Sas and Mindy talk...
I am nearing the end of my book now, it had just been shelved as I had been focusing so much on the dream of the Charity, setting up a Centre of Excellence. That has been my dream since returning home from hospital as you know but if I am not careful my book will just get shelved and I truly believe it will help people so I need it to be completed and more importantly published but that of course is the difficult bit. I remember a Man who wrote a book called Chicken Soup for the Soul. I haven’t read it and I do not even know what it is about but its Author was focused on earning a set figure of money and remembered he had this book ready for print. He worked out how many he needed to sell to achieve his goal and I believe he did it. So my goal is to get my book published and out there helping people. A friend Sue, in Cornwall is kindly proof reading it for me at the moment and putting some order of chapters for me. I have simply written as I have felt or experienced and as we know Stroke break does odd things at times it runs, then it stumbles then it clams up so Good luck and Thank you Sue. Punctuation has not been foremost on my mind; just simply getting the words down before I forget them. I have recently started painting classes quite by mistake really but although I find it so terribly difficult to keep up with everyone, I am enjoying it. We began by drawing people. Now I can hear you saying why did I go? I am using my left or should I say wrong hand and I am drawing what I didn’t ever want to do; well guess what I enjoyed it and even went back the following week. It is amazing the things we can suddenly enjoy that would not have entertained before. Well I will close for now as my computer is doing something strange that do not understand and want to press send before it shuts down on me. Take care love to you all Sas x
I received half a forest worth of papers listing all my ailments, difficulties etc concluding with the words, I can go out to work. If there was a job I was capable of and could get to I would be the first to snap it up but unfortunately my brain alone at this stage still will not allow this to be a possibility. So I had to attend Court with my representative who was Pat my Neurological OT on arrival we were searched then told where to wait later told where I have to sit in front of the Judge all very formal. I would first be questioned by the judge then by a Doctor. It was mentally exhausting but also because I always try and focus on positive things however small this was emotionally crippling talking only of negatives what I can no longer do I battled to continue and fight back the tears. This lasted for an hour and a half solid questioning only to be told they had one other case to hear so I would be notified of their decision in the post. We left and luckily the person driving us home was sitting outside waiting but I could barely stay awake for the journey home. It left me feeling very flat and I had to work on myself so that I didn't feel low.
Hi Mindy,
I think I mentioned I should have listened to my body well it hasn't let me off for not doing so yet I am still struggling !!!!
I haven't felt I can manage much at all despite returning to my normal dose of tablets the body has not yet responded. I still feel very tired, have a great deal of kidney pain and my blood pressure all over the place no use to anyone no use to anyone really. I have written a little more of my book but very little else. Then Henry downloaded this app onto my phone where you play with as few or as many people as you wish and you have to draw the word you are given and your opponent guesses it. If they guess correctly you get more points and you both climb a level, a little sad I would have thought in my former life but hey ho. I actually think joking aside it is helping my brain to think and work in a fun simple way but work more all the same and it is a bit of fun. So if you have an apple phone it is free it's something like omgpop draw get someone to download it and start playing. You will know if you have selected me as a friend they are the bad pictures drawn with the left hand when I would have been right handed.!!
Happy drawing & Happy Easter.
Hi Mindy,
Well I fully understand why the specialist tried to reduced the dose of my steroid and I appreciate it was for my benefit but I do wish it hadn't been done because I still feel SO rough. I just cannot however hard I try get back to where I was before. I keep having episodes where I nearly pass out plus my blood pressure is either high or low?! Today I am having a twenty four hour monitor fitted so whether that will shed any light on anything I don't know. I just have no energy, feel really flat and if I don't keep a watch on things could get low as I just don't feel well enough to do anything. If I try too I feel worse so it makes me go backwards.
Well that's it from this end at the moment.
Love to all,
Sas x
Hi Mindy,
We have had some sad news in the family, and we needed to fly to South Africa for the funeral. Nick really wanted me with him so we had lots of Doctors check/questions/letters etc etc to sort and only two days to do all!!! I was allowed to try providing I waited a week before attempting to fly home. I was met at the airport and wheeled to the aircraft and the same the other end. The downside was we were delayed two hours before taking off I had to keep all my emotions to myself as Nick had enough to deal with, I needed to be support and strength for him. I felt pressure in my head during the flight I had a lots of water and some tablets and somehow slept!!! On the way back I could not sleep at all, I didn’t have the pressure luckily but I had such pain in my hip and still do have from the confined space. The sense of achievement is amazing though. Although I would say to anyone check and double check with your doctors as all our situations are so individual and then if you do fly it is important to drink as much water as you possibly can and keep getting up. I kept using my FES on my weak side to make up for the fact I couldn’t move the foot or ankle during the flight as exercises. Get your Doctor to write a letter stating what help you need and what medication you are on and have to carry with you. Phone and book wheel chair etc in advance too. Once in South Africa because there wasn’t any humidity but it was hot it was such a boost to my health. I slept in late every morning then sat in the sun for a very short time but we had lunch and breakfast outside under cover as I had to protect the stroke side as it is my first time in sun and we were very high up. I then slept in the afternoon for a couple of hours. Had the circumstances been different it would have been lovely to stay longer. Since being home I have had pain in a small area of my head and I am feeling very tired I haven’t yet managed to bounce back. Bye for now love to you all, Sas x
The next bit is a little for our page which comes from another lesson learnt!
Listen to our bodies.... I am speaking from experience when I say this and maybe had I have done so I would have saved allot of people's time and myself from the set back.
I recently visited my specialist and for very valid and sensible reasons she tried to reduce my dose of one tablet. This is just over a week ago now but I have really been struggling. Not feeling at all well, struggling to stay awake some days just managing breakfast then I would sleep until lunchtime only to go back to sleep again. I was kidding myself that this is just my body adjusting maybe I need two full weeks and my bodies natural resources will kick in. Who was I kidding I was feeling worse not better experiencing other symptoms all of which I had prior to going onto this medication. My inner feelings were that I need this medication at the dose it was I was feeling better than I had for nearly two years yet I kept ignoring my inner voice of wisdom; deep down I knew waiting two weeks would only mean two weeks of feeling more unwell but still I stuck with the lower dose THEN the body said okay you are not listening & we need some assistance here I collapsed. To cut a long story short I needed a huge dose of the missing steroid the equivalent to ten days worth and to go straight back onto my original dose. So my message to anyone trying different doses, which we have to regularly because of the complexity of what we take. ( it's a fine line between helping one thing and the possibility of causing something else). Always go with what your body is trying to tell you if you are experiencing difficulties due to drug changes DON'T suffer quietly contact your Doctor as soon as possible and discuss it with him or her. You are not being a nuisance as I thought I would be you could be saving yourself from discomfort and others time think of it that way.
Sas
7th March 2012
Hi Mindy,
I realise how long it's been since I'd written anything for our readers and for that I'm so sorry. I truly thought people would be long tired of my blurb but now realise that we can all relate to one another's experiences and so hopefully by recounting my mistakes of which there are still many it can prevent others falling in the same trap!!
Since I last wrote I have been unwell quite allot. I was trying to raise money for our local Stroke group which is all self funded now. I painted Christmas Cards but it was only me, my friend Louise & her Mother Carolyn selling them. They are both volunteers the other volunteers didn't offer to sell any. I sat in village Halls trying to sell them both mine & Louise's friends helped but I did too much and became unwell eventually I was taken into hospital and really not well until Christmas. Then New Years Day I was taken into hospital again this time kidney infection & fluid around the heart none of these things I had ever suffered from post stroke days!! I have learnt finally that the body reacts so differently now to how it used to and copes with so much less!!!
I haven't done any painting now for a long time but hope to start again soon.
I am not sure if I have mentioned before that I am writing a book I haven't done anything since last Summer as I haven't felt well enough but it is my intention to begin work on that again now. So far I have thirty five thousand words and I think I need fifty thousand for a good sized paperback but obviously content being paramount I am just hoping to get it published and out there it was my intention for that to be this year so I will keep you posted.
From Sas
To Mindy
Sent: September 11, 2011
Hi Mindy,
I will try and write a little but today is not a good day though so if you do not wish to use it I fully understand.
In June I did a huge tea party to raise money for stroke we were fortunate enough to have a splendid hot sunny day. We put tables and pretty table clothes outside had hundreds and I mean hundreds of cupcakes some very generous raffle prizes, some very special cakes that were auctioned and my Mother and a few friends made tea for England it is amazing how many cups people can drink. Jack helped and donated some of his plants for sale and also helped me sell raffle tickets too. People enjoyed it so much they were still here at 7.30!! we just said donations Nick and another friend made a very generous donation and another friend topped up very kindly to round it up and another had brought some splendid cakes so at the end of the day we had raised £1000 for our group, which will have to be completely self funded at the beginning of October this year but I had over done things and ended up with Cellulitis I was then on very large doses of antibiotics and complete rest but I must add I did manage to stay out of hospital. Just as I thought things were looking up and I could begin my home physio program I had put together I had another clot and a little stroke I am now on yet another tablet and still not feeling too good.
I am now three Strokes and close to eighteen Months on since the first and I think in all honesty it is harder now in some ways than the early days as then people knew and understood my limitations. Now I have pushed myself so hard to improve as much as possible try and look like I used too; I don’t of course but definitely improved and now people expect so much more. Expect me to be able to do things I cannot understand and respond to things I cannot and it is both upsetting and frustrating. I am working so hard on exercises for my arm and hand my leg etc but I cannot improve my brain and that of course is not visual so I am encountering some problems there. I have written a home program and am very strict with myself.
I was told pretty much by the specialist that this is as good as it gets then as if that wasn’t enough a huge dog jumped up at me tore the ligaments in my leg and damaged my knee cap so it has been a difficult few months in trying to still progress but I have all the same. Not with the physio but I have found a new interest, more shortly on that.
I have someone come to the house once a week to do deep tissue massage, he is due shortly as a matter of fact. We joke it is always nicer saying goodbye to him rather than hello as it is painful. Why is it that you can’t feel anything then suddenly it hurts no happy medium?!?! I also have a mirror box I work with on my hand daily and that has greatly improved things, you can buy them over the internet and they are so amazing at tricking the brain. I have someone come to the house for 3o minutes twice a week although I have had to stop that at the moment and that is to help with exercises for the leg and arm. Obviously I have to pay for everything I do it is a decision either except what the specialists say or carry on fighting on your own and try and prove everyone wrong.
Also at stroke Club a Lady came along to see if we would like to have a go at painting with watercolors’. Well I will admit my first impression was I will stick to my coffee and biscuits thank you. If I can’t use my right hand and I can’t write how am I going to paint. Well we all had to have a go and I have to admit I actually quite enjoyed it, Sue who had helped us said I should borrow a couple of brushes and have another go at home. Nick took me off to the shops one day on our way back from a treatment with Steve and I purchased some paints. It was a friend’s Birthday shortly afterwards and I needed a voucher so decided to paint one rather than battle with the computer. Eamonn has a great sense of humor so he would laugh with me if all went terribly wrong. That was the first of many hours of painting. It is something I would highly recommend and it is something managed on your own and passes the hours with some sort of result at the end sometimes rewarding and sometimes you can just say you have relaxed and enjoyed what you have done. It is said to be very beneficial for Stroke survivors. I have also now painted some designs for greeting cards and a friend and her husband paid to have them printed all proceeds of sale go to our local Stroke Group.
I have also worked a little on my book. I have no idea how to write or where I will go to see about publishing but it is my intention to write it and if it gets just one reader to ask for help quicker than I did it has helped one person at least but obviously it is my intention that it will be of some support and help to both survivors and careers.
Also during the past months Henry has taken and I am pleased to say passed his GCSE’s I think that pretty much brings you up to date Mindy. Jack pops in to visit and he looks so well we have a lovely chat over tea and biscuits, so English I hear you say.
Love to all,
Sas x
From: Sas
To: Mindy
Sent: February 18, 2011
Hi Mindy
I actually did a bit towards my book yesterday. I looked at your website as a friend what's to read what we have written. I couldn't find it. I hadn't realised how exhausted I had become with my efforts of rehab the driving, swimming and brain group before I know it another week has gone by then month that I hadn't written anything plus I didn't feel I had anything of interest that anyone would wish to read, I am sorry.
Yesterday I worked a little on my book but I am still fighting tiredness from Saturday. Last night my eye was bloodshot and throbbing & I almost passed out but managed to lie down intime. Still I need to rest more.
Lots of love,
Sas xxxxx
From: Sas
To: Mindy
Sent: February 16, 2011
Hello Mindy,
The cards are a selection of words/sentences the actual cards being smaller than playing cards in a box could be bought as a gift perhaps. The idea being you select one a day and just keep that though in your head or someone selects it for you. A bit of harmless fun BUT so much truth /power in the wording. They are things that have helped me along the way so far. Ie celebrate every little achievement however small. Celebrate what you can do rather than look at what you cant do. Ask people not to shout you are not deaf just injured. You are still you just injured at the moment. Laugh at your mistakes it makes it easier and they will get fewer. Honor the healing power of sleep. Ask me questions with specific answers and allow me time to search for them. Be patient with me and remember I am trying. ………. I have written about 70 something I think just pick one and work with that each day. I don’t know where I could get them produced or for how much but they have similar types as in size etc in shops that sell stones spiritual books etc.
I have only just woken up and although I though I had been listening to my body I had shut out some of its requests. I thought by trying to get my license back and the freedom to drive I could take some pressure of Nick and get Henry to school. I had not realized that I was struggling to keep my eyes open all week and not managing to email you to contact friends at all.
What you say about the brush strokes is brilliant and I love the name too. I think it would be so therapeutic and rewarding.
It is absolutely pouring here at the moment any view I was looking at half an hour ago is completely lost by heavy rain.
Take care love to you all,
Sas x
From: Mindy
To: Sas
Sent: 15 February 2011
Hi there,
Your body is talking to you and you are now listening!!! That is really good and you will progress well but perhaps not at the speed you imagined.
Re the inspiriation cards - can you refresh my memory please. (Put it down to a senior short term memory!!)
We do have a couple of stroke people here who were artists prior to their stroke and have had to relearn their art using the other hand. The work they do is amazing. We also have local stroke groups called "Brush Strokes" for other stroke survivors who want to take up art and they also put out brilliant work.
Lots of Love
Mindy
From: Sas
To: Mindy
Sent: February 16, 2011
Hi Mindy,
How are you all? It is half term here so we are having a week in Cornwall although sadly Henry isn’t with us he is in Cyprus with Tim. He flew out yesterday on his own we dropped him at the airport yesterday, then travelled down.
I have met with another learning curve but am learning to listen to my body more and the signals it is giving out to me.
I have had a few driving lessons now and afterwards fall asleep immediately and sleep pretty much all weekend. I am then tired all week just about recovered by Friday then the following day I have a lesson again. I didn’t see anything wrong in this because I saw it as a way of trying to get another tick in a box. It had been pointed out to me that I should perhaps leave it a while it is taking me so long to recover that it is perhaps putting too much strain and taking too much out of me. The brain may be struggling too much. I didn’t listen I just continued. Then last Saturday Nick put the wrong fuel in the car by mistake which meant I couldn’t sleep immediately after my lesson resulting in me feeling SO unwell to the point of feeling a little nervous. I also felt unwell the following day too. I began listening to the advice. Only that Saturday Steve my instructor said he is happy to continue with the lessons if I wish but he has talked to the contact at the Assessment Centre basically he saidmy fatigue level shows I should be leaving it for 6 months brain not recovered enough it is too soon. I have now listened and cancelled my next lesson. I realise I was just muddling through each week too tired to phone or email friends just trying to be awake enough for my next lesson!!
I am going to Steve every Saturday now for my treatment; sometimes the scanner sometimes, EFT sometimes Bowen sometimes a combination but I find my visits fascinating as well as beneficial they just go too quickly. I think they gave me extra energy to manage driving without them I would have struggled more.
The scanner fascinates me but I do not have enough knowledge to talk about it but in laymen’s terms it wakes up nerve endings helps reconnect messages within.
Lots of love to you all,
Sas xxx
From: Sas
To: Mindy
Sent: 28 January 2011
Hi mindy,
I am now starting my driving lessons both exciting and tiring. I am so tired afterwards its unbelievable. For several days I just sleep but it will make such a difference if I could drive.
I started Stroke group for the first time this week. We meet once a week in the village Hall just up the road from your old house in Astley. I am on a table of six two of which are volunteers. Lovely people who have made me feel very welcome. I can tell you all about them but I cannot remember names apart from John as he is also in my Brain group.
It has been difficult to write for a while because it has felt as though I have had nothing to say. I reached a plateau , no progress, just trying the same old things every day and no real rewards so would have been a little dull for people to read.
I have now had an idea of some little cards I wish to get printed and on sale as I believe they will help people in the early stages but I do not know where or how to get them produced. They could be in a box and could be bought for people whilst still in hospital, they would be inspirational I believe and a percentage of funds could go to Stroke. I have the size etc planned and the wording for 55 cards. I was planning about 60 plus. The idea being you just pick one or get someone to pick one a day for you. Work with that or let that help you each day. Simple but effective.
I need to get ready now as today I have hydrotherapy and to be honest I really don’t feel like it as I just cant get warm; wrong attitude so hot drink another bowl of porridge and change my attitude.
Love to all,
Sas x
From: Mindy
To: Sas
Sent: 26 January 2011
Hi there,
We are all fine and I am glad you are progressing. It is a slow recovery that is for sure but you are getting there!!
We have missed your updates so please do keep them coming. It is great for others to see they are not alone with their progress. The ups and the downs are all part of the rehabilitation process and if you are happy to share then we are really pleased to be able to be part of that.
Love Mindy
From: Sas
To: Mindy
Sent: Tuesday, January 25,
Subject: Nearly a Year on
Hello Mindy,
I think I must have hibernated a little and not realised!! I have been pushing myself and in doing so not been capable of writing too; also I don’t feel I really had anything to say as it feels progress has been very slow if at all over the past months.
Coming up to a year still the same not really anything of note to say but a few little hiccups or maybe turning points I suppose to note. The first being my Birthday. Everyone was so lovely but somehow I felt a little sad and shed a tear. Nick just said an innocent thing no activity presents this year and I became a little tearful.
The second thing was between Christmas and New Year we travelled to Cornwall to stay at our Lodge which we love very much but on the way we stopped for fuel and quite by chance stopped at Sainsburys in Taunton which is where I stayed the day before travelling home just prior to having my Stroke. Somehow this struck an emotional chord. Then we arrived in Cornwall where the previous year we had spent New Year and gone for long walks a sudden reminder that this year I could not go for such walks again I felt emotional and a little tearful. I did not want all the hype of New Year; I don’t like New Year at the best of times. I had a couple of days feeling like this then New Years Eve arrived and went and I was fine just normal days again.
The hair I had grown to jide my face because of how it still feels ws just hindering me because it reminds me I can do it myself and need help. When I swim to help recovery my hair feels ugly so it is not helping how I am feeling SO it has all been cut off very very sort and it is the new me. I can swim and manage. People are saying wow I like your hair rather than, oh you are looking a little better or you are looking this today or that today. I feel a little more the old me.
Well that’s a little update. I am going to try and write more often if its still of any use. I just felt it became boring because I didn’t have much progress to report.
Love to all,
Sas x
From: Sas
To: Mindy:
Sent: Saturday, December 04
Hello Mindy,
Not alot to report really. I no longer have physio I do it myself I still go to my brain group one morning a week, just five of us in the group lovely people I will miss it as we all will when it finishes in two weeks time.
I go back to selley oak soon for my shoulder fitting of FES
I still have more assessments and tests before being given a final decision on my driving licence. I have a month to have all my driving lessons and take my second driving test but with snow and ice on the ground I don't see it being realistic to achieve.
Today two friends took me out for a three course champagne lunch which was delicious ( my birthday) a couple of firsts here one a birthday like I am now not very mobile and dependent on others, unable to drive thinking a recent birthday present was polo lessons!! Something I feel I will never be able to use/ do now. Secondly relying on my walking stick in icy conditions?!?! A tricky one.
I think that's all from my end. Bye for now love Sas x
From: Sas
To: Mindy:
Sent: Tuesday, November 23
Hi Mindy,
How are things your end just as busy? No real change my end since I last made contact. I went for my driving assessment but I am amazed at how exhausted I was following it. I lost two days and to be honest remained tired the rest of the week. Something that ordinarily we do without giving any thought to just like walking etc took so much concentration I was totally drained. I have to have adaption’s and lessons, return then for a further test and following that report the DVLA make their final decision as to whether or not I am allowed back out on the roads.
The other surprising thing is not just learning a new way of driving, left foot accelerating and breaking but that if I am to drive somewhere ow long I can stay so I am still able to drive home!! It is still such a learning curve.
My new FES machine really is brilliant it is so powerful my leg is fast and moving well I feel like a dressage horse. I really do not have anything else to report I am pushing myself so get very tired. I have to do my physio myself at home now so just slowly get on with that.
I will write again soon,
Love from
Sas xxx
From: Sas
To: Mindy
Sent: October 25, 2010
Hi mindy
I dnt expect reply just yesterday first head & eye pain free day so used computer same today although eye little worse.
I hear what you are saying but benefits sounds luke lost cause our new government which I have to confess voting for too stooping new people claiming rather than investigating those claiming who as one person put it to me loaded mountain bikes onto their car drove to exchange for new tax free car so went for days cycle whilst car being prepped and delivered!!
I am well looked after from Pat who is from the OT/neuro and works so many hours a week with Headway I have help from Headway and Nick has managed to go in and talk to someone there about how he is feeling but I have given up with the Stroke Lady she didn't ever arrange for my magazine to be delivered and I was looking forward to that every three months also she was going to sort a yoga group locally and gym but she hasn't come back. She has too large an area so it doesn't work. I am doing voluntey help to raise money for stroke in my area in November with two of my friends.
Yes I am very lucky re FES most are in selly Oak for use with all poor Soldiers but Kidderminster has use of one. I had it initially for a week but now have had for couple of months and can keep until someone else needs it then when I go th Birmingham they may let me use another, fingers crossed.
Have a lovely weekend all of you xxx
Sas
From: Sas
To: Mindy
Sent: Thursday, September 02
Hi Mindy,
Well we actually have lovely sunny weather again today so need to make the most of it, I hope it will be with s for the weekend too. Saturday we are going to Burley which should hopefully be a lovely day out I have hired a mobility scooter so that’s another first!! I am a little nervous hoping I don’t make a total fool of myself, probably will.
Tomorrow I am going to have my hair cut another very every day thing by normal standards but for me the first time since before my stroke I will have been into the hairdressers so another first to tick off all good for the feel good factor.
Yesterday when I went in for my Neuro physio visit Emma had cleared it that despite the lack of funding all being well I am able to keep my electric leg, as it is now nick named for a further six weeks; it is helping so much I am delighted.
We do a test walking between two lines and counting how many steps it takes to do so. Well if you can call them steps as I do not clear the floor with the effected leg I usually do it in 24 steps, with the gadget turned on full the nerves charged up the foot leaps into action, all quite strange because it steps then I know I am moving rather than the usual way around but hay we are making progress.
I did the same test in 11 steps and cleared the floor each time. I have now been referred to someone else at the QE Birmingham whose name I cannot remember but her waiting list is usually 12 months!! She will try and arrange for me to have the use of one of these for longer if not possible due to lack of funds it is possible to purchase but I do not know the cost of such a thing. That brings me onto benefits; I have just received another letter saying now they have to have a report from my GP as all the other reports do not appear to be sufficient.
That now will be a problem as the previous reports are from people who have been working with me over the past months my GP has never met me!!!!
Well I will close for now and go and have some lunch, have a good weekend love to you all,
Sas xxx
From: Sas
To: Mindy
Sent: Thursday, August 26
Hi Mindy,
Well just I would report an exciting day at physio, yep you did read that correctly! Today we fitted some electronic gadget basically little pads on the leg and foot and a battery pack at the end of the wires I can clip to my waistband; far more discreet that the gump leg. Well firstly turned on I was asked can you reply anything to which I replied no, we repeated this lines several times then suddenly the foot jolted and twitched and turned it really was quite moving for all present. The first time I had seen my foot move for about eight or more months. Well I am now wired up and looking far more normal. Today I have been out to lunch I was greeted by the usual stares of a few ignorant so & so’s but it no longer bothers me, I just felt like lifting my cardigan a little higher and saying have you seen properly now?!! Instead I behaved sat down and ordered my drink and later lunch. I have returned home to start my afternoon cooking with Pat part of my headway session I am far too full to be honest to look at food but there is no getting out of it even though we have more than enough supper left from last night.
Last night we had people to supper Emma, Henry’s girlfriend and Jacques an old friend. I cooked, well as they joked over supper I did very little really. I planned stirred all the spices etc onto the chicken put all the dips into bowls. Whipped the cream, opened the meringues and chocolate cake. Then gave orders to Henry as to what to chop & how to arrange certain things. Prepare the fruit for the meringues and Nick actually cooked it all while we had drinks and they played on the wii eventually persuading them to play tennis left handed I too joined in on the wii so it felt like a normal evening. They could not believe how difficult it was playing the game with the wrong hand, welcome to my world I laughed and actually won one game; it didn’t feel so good having had all these months of practicing with the wrong hand when they kept winning!!!!! We did laugh though, I am exhausted today but well worth it.
I will close now as I know the doorbell is going to go any minute now, love to you all,
Sas x
From: Sas
To: Mindy
Sent: Sunday, August 22
Hi Mindy,
Well I realise I haven't written much of late but really haven't had anything of note to write! No real change. When we were in Cornwall I worked so hard at improving both arm & leg in the pool & slept so much but in between we went out for lunch or supper & did normal things it felt great so returning home and picking up where I left off with physio, headway appointments etc just reminds you what's what, I felt normal when we wereaway and my day was my own to plan as I wish, I know it was a holiday so it's different but I haven't yet settled at home.
I have felt quite low since being home again I think because in many ways I have improved so much & when away I could do things at home I am just in all day Friends kindly visit & take me to lunch all of which is lovely but I am just sitting all the time again not really moving at all because I can't get to a pool etc here. Anyway enough moaning and I don't think I have really even explained it very well but also as you have said it is part of the process anyway sometimes you just feel low so I should possibly not analyse at all.
A friend is visiting tomorrow & Tuesday & Wednesday another taking me to lunch so really I should shut up my moaning!! Tuesday I am having some sort of electronic thing on my foot to stimulate muscle activity. I have worked so hard on my arm the Neuro Physio did agree definate improvement. My cholesterol is still rising so I need start another tablet, Nick says told you so everyone who visits we have tea & cake or biscuits & cake!!!
Makes a change over past few days only really rain but Sunny outside at the moment. Enjoy rest of weekend what's left.
Love Sas x
From: Sas
To Mindy:
Sent: 04 August 2010
Hi Mindy,
I am sending this on my phone and Apple or O2 have changed all the format, goodness knowes why the old one worked perfectly well and I understood!!
Silly time to write too as I am due to leave with Nick shortly and as you know gone are the days of rushing. Nick has to go to work & someone is going to wash my hair for me, not before time it's like a scarecrow having been in the swimming pool twice and splashed by everyone leaping in.
The swimming is helping, I have been working my way through certain exercises on my list from the physio but in water it gives you a sense of achievment; each exercise feels a little easier with the suppoert of water and with a big woggle under my arms I can't possibly fall over so all is well and safe. Mick leaves me in the pool and goes and takes the dog fir a walk the only problem being he has to then change and get into the pool to get out but I think he feels it's worth it to be free of me for half an hour, forty minutes!! I would say to people don't be tempted to try using the metal steps I am told so often people have broken an ankle doing so as not having control or feeling the leg can easily slip and get caught behind the steps.
Well I think that's my update from Cornwall for today.
Love to you all,
Sas xxx
From: Sas
To: Mindy
Sent: 01 August 2010
Hi Mindy,
I realise it’s a little while since I last wrote and don’t really know why other than time just GONE?!? I pushed myself a little too much then paid the price and didn’t feel well at all so had to have few days in bed again allowing everything to settle down. Then back to physio etc although Headway has stopped temporarily only until funding has been sorted. I have had a visit from a social worker and finally completed a 68 page form to apply for Disability Living Allowance but being totally new to the system and those kind of forms coupled with my personality: I am much better than I was and determined to make full recovery; YEP you have guessed it I haven’t done myself any favours and have now had a note back promptly telling me they are unable to award me the benefit without having a full detailed report form my Occupational therapist. The same person who filled the form in for me so I am not holding my breath. She is so so kind and has done the form for me in her own time over a weekend and evenings but has the same personality as me and has helped me to remain positive plus never filled such a form in before. We have learnt it is an art and a certain type of person gets all!!
I feel fed up about the above mentioned outcome as I haven’t had a penny since January and I was going to use that money to help with three things massage on the leg & arm, swimming & riding for the disabled all things to aid recovery but not affordable at the moment.
Paul has told me that in NZ you have discovered that riding promotes recovery because of the balance factor, have I understood that correctly? If so at what stage would you advocate starting? As early as you come out of hospital to aid confidence etc also or do you have to allow a certain time lapse?
In the main I am remaining in good spirits but some days I wake up and for no particular reason feel low, nothing has changed from the previous day but I just feel very low and disinterested in anything and everything. I feel I may as well live in a nursing home as I have spent the last six months only eating, sleeping and sitting, usually just in the same arm chair in the kitchen. I am finding it worse in the School holidays because I cant do the usual Mother things take Henry to and from places do things with him. He wanted to go into Worcester the other evening and meet his Girlfriend and a couple of other friends for a meal. Nick was tired from work; Henry didn’t go in the end, that sadden me because I feel if I could still drive it would not have been a problem I would have dropped him off and later collected him. It is his first Girlfriend a new thing and I wanted him to be able to go. Things like that make you feel low. Usually pre Stroke I would be so active, always on the go so just sitting and not being able to drive is getting to me. Other days I bounce back. Last week Henry was in Majorca with friends that was lovely because I knew he was having a lovey time and I wasn’t preventing him doing things. Yes obviously I miss him when he is away but I was happy he was happy enjoying himself.
Friday I had a HUGE lift and cheer up I did some exercise, I left my chair and Kitchen. Jane arranged a surprise and we went to Riding for the Disabled; well you would have laughed if you had been watching me. The biggest hurdle and fear was climbing the mounting block. I had visions of ending up over the edge and flat on my face. When the leg has a mind of its own and goes the equivalent of two and a half steps in one I would have run out of space and been on the ground also I had nothing to hold onto it was scary. Jane has probably now got bruises where I held her to prevent falling. Then we realised that due to the tightness in my hip I would only be able to attempt mounting from the wrong side, so brain as it is I said well how are you going to lift the block with me on it?!?!?! Once reminded that the horse can move we continued! Well when I was eventually on, the pain was so great my eyes went instantly red and I felt too nervous too look down and inspect whether the leg was in fact on the floor at this stage or still attached to me. Jane and the instructor seeing the pain on my face and the eyes watering both asked if I would like them to get me off. Well I would not have been able to stand the pain moving in any shape or form so just sat until the sickness etc subsided a little. Then determined not to be beaten we walked on eventually the movement of walking helped stretch things a little. I later decided to try a trot well NO I couldn’t it was AGONY so I held onto the pommel lookeddown at the foot to see it was where it needed to be and stood up and attempted rising trot. It felt wonderful to do something normal an activity. The actual process of putting my jods etc on was brilliant. At the end of the lesson you guessed the next hurdle getting me off. We eventually did it I was so tired I was falling asleep in Jane’s car travelling back to her house. We had black coffee and pain killers. I then had lunch and rested. I was so tired the rest of that day but it was fantasic to have done.
Well that is my update for the time being. Hope you are not working too hard lots of love to you all,
Sas xxx
From: Sas
To: Mindy
Sent 07 July 2010
Hi Mindy
I just still function on a today tomorrow basis at the moment extending to days of the week but not for some reason incorporating dates! Dates and numbers are proving to be something of a barrier or simply something I just forget!?!
I had spent the morning cooking with the girl from headway at the end she said your heart isn't in this today is it? To which I replied no I don't know whether to put it down for the dog or chuck it in the bin. I had sat for ages peeling potatoes by securing on the spike peel a bit turn repeat the exercise and so on only for the stupid things to boil away to nothing in the water. The mince we had bought from the supermarket meant to be Aberdeen Angus lean beef tasted horrid and gristley well after all that effort a whole morning had gone the kitchen was a tip and we had a take away for supper!!
My weeks now are hospital and cooking. I have got to a stage that I feel I am going backwards. The neuro physio has basically written off my leg and foot as that's it now that's as much as I will recover, I have so much pain in my hip I am no longer sleeping and I am still sitting in my kitchen all day long apart from when I go to the headway pottery group but I just sit there so I have really just sit for 5 plus months and I am fed up with it I am living like an OAP!! I thought ENOUGH I am going out for walk and fell getting out of the door but I will try again today. Yesterday after my pottery group a friend collected ne and took me out to lunch.
I am so busy with all this cooking I know it's to help me but I am not having a minut to myself so I can't remember when I last looked at the computer I am doing this on my phone quickly. Next week I am going to Cornwall for a week as Nick has to work there so I will have a little time for me and see if I can put some thoughts down for my book.
We have met with another learning curve too. I thought because I have been In the sun I am looking healthy instead of I'll now and cooking instead of Nick doing everything a few things returning to normal all these things would help Nuck how wrong was I!! He has been snapping at me and Henry being quite short. Henry has been worried about him. Then he started ti have pains in his side again he had pancratitus about 18 mnths ago anyway to cut a long story short poor Nick really has reached exhastion and is finding it harder now. He says now I look more like the old me it's harder to deal with becauce he looks at me and thinks I am back. Then he expects me to behave like I used to. Be able to get out of the car on my own, get up steps without help, talk when tired qWithout stuttering and slurring etc etc so it's more difficult I am not explaining very well but when I looked very pale, sick face still notreturned to before I looked unwell but when I look more well it is difficult in a new way.
We are working through things and Nick has finally agreed he must allow a little help it is too much for one person being carer, parent, doing school run plus backwards and forwards for sports matches etc. All houswork ironing etc and holding down a job.
Well I must close now and get off to physio. I am sorry I. have been quiet for a while I have been exhausted by the time I've finished 6.30 some days I've been exhausted
love Sas xxx
From: Sas
To: Mindy
Sent: 01 July 2010
----- Original Message -----
From: Sas Freeman
To: SFMR Inc
Sent: Thursday, July 01, 2010 9:57 AM
Subject: RE: Stroke Web sites
Hi Mindy
Today henry has had sports day and I was able to go we were allowed to drive the car to the field and park next to the refreshment tent. I had tea and biscuits brought to me I was suddenly having arrived an hour and a half late first in the que and waiter service. I had just come from the hospital and because of the Addissons as my blood pressure dropped I passed out!! Unfortunately the tests confirmed I don't have a hole in the heart. This is a potty. Sounds strange I know but we saw that as a reason for the strokes a small procedure would mend it and no mote strokes but no nothing so simple. They still believe a link with the migraines.
Anyway back to sports day we just arrived car on the brow of the hill as Henry was on the start line we managed to watch all three events and zi am proud to say he won all three too.
I found the event very draining lvly to see some people, my dear friend Kay ny my side but one came over just to have a close look at what I look like now then proceeded to talk continually about herself. Kay almost said well Sas and I thought we might go parashuting Saturday!!
A few others came over and had a nice chat all helping but I realise I have changed. I no longer wish to waste time and energy on people who don't cate in the past I would have done.
I will close now I am very tired.
Love to all,
Sas xx
From: Sas
To: Mindy
Sent: June 24, 2010
Hi Mindy
just thought I would update you on things although no real change or things to report.
I still attend neuro physio outpatients once a week I can't say I enjoy it the place is so busy that humour has to be left at the door! The place is far too serious and miserable, if you feel chesrful and bubbly on arrival you find yourself feeling abnormal. This week I was told that five months down the line and my toes still dead it's unlikely I will get feeling or use back in the toes and foot so I left feeling like everyone else in that department! I have since decided to ignore it and fight on.
Next week I have another scan and the heart tests that is then all the tests complete. I also go to my first pottery class with Headway.
I am having a lie in then ICT are here thisafternoon and then I am going to have supper with friends to do something a little more normal like pre stroke days. Nick is away with work, Henry will stay with a friend from school. Another friend will help me in the morning and we will have breakfast together before Headway arrive for my home visit. Then another friend is visiting and Nick will return during the evening.
Have a lovely weekend all of you.
Sas x
From: Sas
To: Mindy
Sent: June 19, 2010
Hi Mindy
I have now just moved doctors fir the reasons previously explained., not my choice which I am now quite uneasy about they do not have an ICT team in this area so had I been with them goodness knowes what care if any I would have had once leaving hospital?! Totally different funding only certain areas eyre forest being one have the facilities and teams that have helped me it is a new thing some areas don't see a need.
Have a good weekend.
Love Sas xx
From: Sas
To: Mindy
Sent: June 12, 2010
Hi Mindy,
well today I write with good news, I have officially been signed off the ICT Team (Sad in one way as I have worked almost all day every day since March I will miss them) but also fantastic that I am now promoted to the next level.
The next level I currently have mixed emotions about but it is very early days, having only been once and I realise I need to give it chance.
I will now go once a week to neuro physio outpatients, once a week to Headway and also if I wish to a stroke group. I have chosen to decline the stroke group for no other reason that due to my age I am fortunate enough I have people popping in so I do not need to waste peoples time inorder for me to have company.
Unfortunately at the moment the only time the physio department can slot me in is when Headway is. As wrong as it is given the choice I would pick headway.
My first outpatient appointment was this Tuesday 7.45 a very friendly very chatty Arthur arrived to take me to it. ICT had arranged this. In the UK stroke, cancer and People needing to lie down obviously are provided with hospital transport.
Well we arrived and I met Emma who is to be my physio, very nice but poor girl booked back to back every working
inure and now inorder to fit me in next week through her lunch break!! It's like a conveyor belt. There won't be room for humour here I fear. I was in and out and realised I hadn't said half of what I was meant too. By the time I returned home I was exhausted. Actual physio time was perhaps tthirty minutes. Really quite different.
Anyway ICT have allowed me today off and I will see them next week for a couple of days. I have not only left my kitchen but my house!!
We have a little lodge in Cornwall we let out it's empty Nick has work in Cornwall so he asked and here we are. He packed all the essential equipment in the car.
It's lovely doing something relatively normal.
A day without physio and I am shattered I went back to bed. The lodge is all on one level so I can get up when I want to. I can get into every room. I can't get outside but I can look at the views and at the moment just enjoy the change and the freedom of getting into every room.
Having a lazy morning, a lie in no physio. It's almost lunchtime and I am not dressed!
I have the computer here and I have just typed out an introduction for my book. I have also made quite a few mote notes. I havnt made reference to it before just incase I don't manage it but you made comment and I have made notes all along. I had a title from very early on but Eamonn a friend who has been tremendous support came up with another name and I think now that may be the one I run with.
Eamonn was a jockey and we ride together when I told him I've been signed off by the ICT team he replied just enough time to enter me for the olympics competition against Detori jumping dismount!
I am fortunate with the support I have from friends and family and as one of the nurses pointed out this week it hasn't dwindled as the months have gone on but I have tried not to name them as it might just be that at the time of day I write I happen to have contact most with one more than others and the ones who ate travelling this journey with me know who they are and how special they are and how I value them.
love Sas xxx
From: Sas
To: Mindy
Sent: June 08, 2010
Hi Mindy,
How are you after the weekend? Did you have a busy celebration? Yesterday I had a visit from Jack which was lovely and he looked fantastic!! So well and full of energy. He kindly brought me a lovely box of Thornton’s chocolates so we sat and tucked into them over a cup of tea. I did feel for him though because it was a total mad house yesterday.
When we spoke in the morning we arranged 4.30 after physio but the Lady from the Stroke Association had been given the wrong postcode so the poor thing had gone miles in the wrong direction and was really quite stressed I made a joke which luckily she didn’t hear, Marianne the Physio laughed; come and relax otherwise too much stress can cause a stroke. Marianne said just sit and relax I offered to make her a coffee but then proceeded to drop a full carton of milk the lid flew off milk went everywhere. Marianne came to the rescue again anyway needless to say the rest of physio was delayed so poor Jack arrived to a not on the door saying please let yourself in (Marianne was doing manipulation upstairs).
The Lady from the Stroke Association was very kind and helpful and going to return to help me further and talk to Nick and Henry BUT I have chosen maybe wrongly to ditch some of what she has said just because of my own personality. She explained that following a heart attach a person either dies or survives and later lives a perfectly normal life but following stroke it never goes back to normal a part of your brain will always be dead and you will always have a disability. That’s as maybe BUT I chose to believe another part of my brain will compensate and I will recover, I will work again. I realize it will most probably be different work but that goes back to the way of thinking maybe the Stroke is a forced way to change some of my life style/type of work etc?? I just know my own personality and I need to keep aiming for full recovery if you allow these bits of doubt then you don’t give it your all. I have worked solidly since March from morning until lunch slept then again afternoon until 4/4.30 EVERY DAY I am not settling for make do I am pushing myself to my maximum.
Today my hospital transport arrived at 7.45 to take me to my first hospital out patients appointment at Neuro Physio. ( a trip out)They were lovely but how different to my others. The staff are on such a tight time frame it is like a conveyer belt. Then trying to find an appointment for me next week the Lady who was to be next complained very loudly she was now waiting as the Physio was helping me when she should be with her?!?! She then got up and moved faster than the slim sporty physio I found myself questioning why she was there?? The department is so busy I will now go from almost all day every day in my own home to all being well once week for an hour in the hospital this will be so different of course. I will need to make sure I do enough still on my own.
Well I will close for today I will admit I am almost falling asleep over this key pad and one more physio session to go and the hand to be dressed I had better be ready.
Love from,
Sas x
From: Mindy
To: Sas
Sent: June 07, 2010
Hi Sas,
Just checking up on you............
Love Mindy
From: Sas
To: Mindy
Sent: June 03, 2010
Hi Mindy
last week I had thought of lots of things I was going to write and tell you about and now I struggle to remember as time has gone on and one thing overtakes another!
When I visited the specialist she confirmed the two strokes and both being clots but said it is often the case we never find out more than that ie the real cause. Which leaves the possabiliry of it happening again as without knowing the reason how do you know what to change? She did however say she is also going to carry out some tests to the heart checking for a hole in the heart if this is the case then simple it can be fixed and hopefully that would have been the cause. Discussing this with a friend she said her husband, also a friend and doctor had asked if Ntone has suggested a something or other? You have fitted to the heart to prevent clots this too would prevent strokes.
Talking of Doctors I have a letter on it's way I am told asking me to leave my GZp's Practice following my scald to the hand the hosptal requested daily dressings my GP to write prescriptions and send out the district nurse. I won't bore you with the details but many many hours later days later phone calls later etc I finally have the dressings today and a nurse three times a week and Nick having to do in between physios and OT's don't do dressings but my doctor has decided I am out of area and eating into hid budget too much basically they refuse to come out the nurse who is visiting is from a totally different practice. One dressing was left on for three days I had to go back to hospital as my hand was red and swollen they told me that type of dressing can only be left on fif twenty four hours it was start of infection. When I had my second stroke and ICT phoned my GP practice they said they would come then phoned back apparently to say they wouldn't after all as I am out of area!! The message here really is none of us hope to ever really need our doctors but just incase make sure where you live you are registered with the right one for you.
Another lesson this week just gone was simply people and going out. Little things you don't expect but once you have done or said it once you are okay.
When I went for a scan I wanted to buy a couple of Birthday cards so I went into M&S and thought totaly unproved selected my cards and some chocolates for someone else, then one of the staff came up to me and said oh dear what's happened to you? This stopped me in my tracks I couldn't find the words because I felt uncomfortable then looking at my bandaged hand said burnt my hand thinking that would end our conversation but no she continued no your leg and arm what have you done? Well the word that so freely passes my lips with physios etc was now choking me it would not come out. I felt vulnerable caught out for not looking normal tears were welling. That kitchen I had been longing to escape from I now suddenly wanted to be safely back inside; all because someone in a kind voice asked a simple question! I did get the word out then I felt sorry for her she was uneasy and tried to make me feel better. The funny thing was
inured later in hospital it was so easy again to say very clearly what's wrong with me without any emotion it was just being caught off guard all these little firsts that I niavely had not thought about. So be kind to yourself and think of little things when you first start going out and about againg following your stroke and remember it will do you the world of good.
My other first last week was my meal preperation and today I have managed the base for cottage pie so Nick just had to do mashed potato to go on top tonight and cook some veg but it was a little more like it used to be when he got home as he walked in to the smell of food cooking only the second time since February. All these little things are mental ticks in a box to getting back to the pre stroke you.
One other huge tick in the box for me last week was staying a night in the house on my own. I really needed to do it. People offered to stay with me but I managed to make them understand how important it was fory progress to be home alone!! I say.that but a friend was with me to get me into bed then another friend came to get me up and get my breakfast the following morning but I was in the house in the night. My friends locked up and unlocked. Sabine locked up let our dog out night and morning before she left for work then Jan came and got me up.
Well I will close for now
love Sas xxx
From: Mindy
To: Sas
Sent: June 03, 2010
Hi Sas,
Some people can be so thoughtless!! You are strong though and will bounce back. Maybe the women either didnt know what was wrong with you or didnt know what stroke was. Hope you sent the tickets straight back via the neighbour!
You sound as though you have got fantastic support and are getting back to socialising - good on you. When you are up to it we will catch up with you on Skype.
Take Care
Love Mindy
From: Sas
To: Mindy
Sent: June 02, 2010
Hi mindy
I am so sorry I havnt contacted you for over a week now when I did try the Internet was down twice then I just let time run away with me and the last few days I stupidly let a stupid womans unkind coments upset me and Jack so kindly came to see me and brought me a geranium. So thoughtful and kind.
I will go back to just over a week ago I was begining to get cabin fever I hadn't left the house since the day the ambulance rushed me back into hospital which was seven weeks ago I had only been in the kitchen and bedroom all this time and was starting to get low scalding my hand hadn't helped the situation; I was almost looking forward to my hospital appointment the following Wednesday as it meant I would get in the car and go out!! The rehab team realised this and told me to sleep straight after physio and not have lunch my afternoon session wld get lunch.
Jane turned up not in uniform the surprise was rehab that afternoon was lunch out in eyre Forest close to us sit In the sun get used to going in public eating in public trying to sit at a picnic bench etc etc it was fantastic yet at the same time I felt so self concious and nervous I am not vein enough to think people are looking at me yet suddenly it felt as though everyone was looking at me I felt abnormal. My face still feels numb my eyesight not returned so I try and put make up on with my left hand to feel like the old me to hide how my face feels. I was doing brilliantly I was out of my kitchen and back in the reall world THEN a reminder of how vulnerable I am at the moment.
I bump into this lady and her husband. She had dropped ten raffle ticker books with
my neighbour for me to sell she hadn't scribbled a note sayid I've heard you are nit well do you mind? She didn't give them to me herself she just sent them. She didn't ask how I was just said drop the tickets back to her house and past comment suggesting nothing wrong with me well my lovely trip out was siuddenly taken away spoilt. I was dissapointed in myself that I let her upset me.
The following day I was exhausted so I slept all morning then I had. a scan so excited in the car and out again. Nick decided to do a BBQ so we started cooking about 4 and I did a pudding Eaton mess re named hit and miss because the cream went all up the wall the bowl kept travelling all around the table as I mixed the ingredients but zi still had enough of everything left for us all to not only have pudding but seconds too. The whole evening was fantastic because it was more like life before the stroke, having friends over now I have planned with the rehab team so I sllep half of the day if I want to do something normal like have friends over for a meal.
I will close for now hopefully tomorrow I will email again with the rest to report over the past week.
Love Sas xx
From: Mindy
To: Sas
Date: Tue, 1 June 2010
Hi Sas,
Just checking up on you............
Love Mindy
From: Sas
To: Mindy
Sent: 11 May 2010
Hi Mindy,
Thank you for that. Unfortunately as is often the case our internet is down and I cannot open the links but will keep trying. Different strokes I am familiar with and have been told about. That has recently come about as has the intermediate care team who help me because there was nothing for younger people until recently. Where as we would be required to go into a nursing home it is age prejudice and won’t take us as we are too young, I have to say I am pleased about that!!
Today I have got my disabled badge I have finally given in and agreed. I fought for so long silly really but it was admitting I need it and have a problem but when going to dentist etc it really is difficult traffic wardens pouncing as they appear to all have personality bypass!
I have really made a huge leap forward today I did two steps bending my knee and lifting my foot a little. I also had the sensation of a slight itch in one finger momentarily today. Little things in a pre stroke world but huge achievements post stoke!!
I must go now I am so so tired and need another sleep before Nick and Henry return home. Supper then bed.
Thinking of you all,
Sas xxx
From Minday
To: Sas
Sent: 10 May 2010
Hi Sas,
Thought you might be interested in this. One is a UK web site for a younger stroke support group called “Different Strokes” and the other is a useful USA based site called the “Stroke Network”.
http://www.differentstrokes.co.uk/ and http://www.strokenetwork.org/
Love Mindy
From: Sas
To: Mindy
Sent: 09 May 2010
Hi Mindy
Well not really sure what's going on with my body to be honest!!
I had a lie in and ready for today's physio we were doing stair practice and I found it more difficult than usual and didn't feel too well. I was helped so didn't faint went very White and we had to stop. My BP had risen but pulse was ok I was put to bed and told as more any change etc phone 999 luckily I just slept again all day.
Nick just bringing up my supper I willactually get undressed and into bed properly and try again tomorrw.
Dissapointing when I had been doing so well to find I just cannot do anything more than sleep again but maybe this is how it goes?'v
Love Sas
From Sas
To: Mindy
Sent: 05/05/2010
Hi Mindy,
Well the boys are on their way home picking up a take away as they come. I have had a splendid weekend despite the health situation. I can’t stress enough the importance of letting friends in when you have had a stroke. It would be very easy to say “when I am better” and put things off BUT DON’T it is important to make life as normal as is possible. I am very fortunate that I have some very special friends. Eamonn, Kay and Anita still continue the support when they have to be away. Kay has included me as much as possible in the rugby tour all weekend.
Sabine and Mike have me to supper and change things from normal times to silly early times so it is doable. Sabine comes around for chats. Jan pops in visits, chats spurs me on. Jacques makes sure tablets are on time, gives me talking to about looking after myself and makes sure the dog is fed etc. Mike and Sabine have looked after and walked Ego our dog so much she has chosen to run into their home at any opportunity. What I am saying is as long as you allow people in and you plan enough rest and sleep around things you can do things that make you feel more normal, more the usual pre stroke you. My Father said that when he had his stroke he didn’t want anyone other than family to see him until he was better; that is not good for the patient or carer. He became very depressed at times.
I must stress I have only mentioned a few of my friends in this email but I am illustrating this weekend .I am not in any way discounting the fabulous way my friends are being to me. The ones not mentioned are strongly in my thoughts and their support will NEVER be forgotten.
This rugby tour I feel has come at just the right time for all three of us. It has helped the three of us in different ways. I have just spoken to Nick on the phone and he sounded refreshed and more relaxed.
Take care Mindy,
Love to you all
Sas xxx
From: Sas
To: Mindy
Sent: 02/05/2010
Hi Mindy,
Henry is on his Rugby tour obviously I had to remain behind. I was upset and had a few tears with my friend but the two friends I was going with are texting daily sending me photos and including me as much as is possible whilst I take the pressure and worry off nick and Henry by working on getting better here.
Nurses and physio here every day and my Mother staying with me. Friends are with me bringing me meals etc. My French Friend took me out for a French meal the day they left our own bit of French he said for the Tour and text to tell them.
This tour is perfect timing for Nick it is allowing him to relax and have some time for himself with Henry and our friends going out for meals after the rugby eating drinking and laughing NOT being a carer which is fantastic, he needed it more than I think he knows.
I am so well looked after with care and with friends around me, I haven’t had a minute alone. I have five minutes now whilst Sabine walking her dog, I am eating with her and Mike tonight.
I am learning to plan bits of socializing around sufficient sleep. A friend was going to take me to see a film, I am not up to that yet so we will watch a DVD if I feel my eye is saw my head uncomfortable I can watch the rest after a sleep or tomorrow. After the second stroke too I have learnt the importance of phoning an ambulance and doing so immediately I feel the head pain and numbness because when it happened I truly believed I could stick my tongue out yet in reality couldn’t, that I could speak yet couldn’t so I cant stress enough to anyone out there if you feel the headache, the tingling/numbness JUST DIAL emergency services speed is SO important. Also after ten minutes I couldn’t speek so if you think shall I shan’t I it may be that then you cannot talk anyway So don’t hesitate Do it make that call.
I have gone from someone who thought oh I won’t phone someone may need an ambulance I can cope and when I look back now and think, I could have killed someone driving the way I was BUT I did not know how bad I was then I didn’t understand………to someone who now ( I have it said to me every day by intermediate care) would dial 999 and say I have had two strokes I have head pain and tingling I believe I am having a stroke Never again would I hesitate.
I am now determined to continue with my program of recovery but I am more aware of the importance of rest and sleep within that.
Take care Mindy,
Love Sas xxx
From: Sas
To: Mindy
Sent: 28 April
Hi Mindy,
Just a quick email as I am very tired but just have to tell you I am home. I was SO determined to get back home. I am only telling you what you already know when I say they tell me it is not uncommon for this to happen following the first stroke BUT as the paramedics acted so quickly got me on oxygen etc so quickly no lasting damage this time. Jane the intermediate care person(my friend) came to do my treatment and took one look at me took my BP pulse etc then within half called GP ambulance within half an hour going up drive in ambulance she said 15mins face drooped speech had gone etc none of which I had realized.
The interesting lesson from this is that I believed when asked to do so I had stuck my tongue out but in reality no it did not move at all my mouth and face felt suddenly numb but had drooped very quickly last time due to being on my own I drove like that to the doctors!!!
Anyway back to Physio OT daily etc very very tired again and slept lots if I am honest my eye sight is worse again it had just started to improve and I had started reading but not for a while now. Also still got the numbness in most of my face but as we know that will come back.
I watched a lady who was brought onto the ward the day after me feeling her face then her lips then her face again continuly repeating both these actions then trying to string a sentence together sensing her frustration…..when all the nurses left I just called across somehow just try and relax stop worrying it will all come back don’t be frightened…. The following morning she waved and smiled the next day she started saying a few words and her relatives asking me more and more rather than the nurses because the questions seem too dim to ask a professional person as they are not directly medical they are just how you feel. Simply what is she thinking? What is she feeling? How is she feeling?
Much love,
Sas xxx
From: Mindy
To: Sas
Sent: 26 April
Dont ever stop - you are an inspiration.
Love, Mindy
From: Sas
To: Mindy
Sent: Monday, April 26,
Hi mindy
Bit of a blip I am back in hospital!! This was not in the plan of recovery was it!! I was planning to go to France on Friday with Henry and Nick and rift club Henrys rugby tour. The one mother is stroke physio and two coaches are nurses. My friends going to wheel me around and arrive everywhere a little late then Friday lost use right side of face lost speech totally intemediate care called doctor who faxed hospital paramedics gave me oxygen and blue flashing light meant v quick journey all returned to normal no lasting damage I would like to go home but still here at the moment.
I keep telling them I am ready to go home.
I hope you had a good week end
Sas xxx
From: Sas
To: Mindy
Sent: 24 April
Hi Mindy,
Well another learning curve I hit the emotional brick wall and I hope I am climbing over. It was my instinct to fight these emotions. Having suddenly lost control of my life, plans, temporarily leg, arm, full vision feeling in my face etc I didn’t want to lose control of my emotions too. It felt that if I allowed myself to be tearful I would be losing control when in reality of course I am doing the opposite and taking control! It has been tough making myself realize this one though. I now fully realize that allowing these tears is part of recovery from stroke. The body has had shock following the change in the brain and it should be allowed to react. These feelings need to be accepted felt and let out it does aid recovery it is not losing control. So yes every now and then I feel a little tearful yet it is odd because it is not “oh I feel sorry for myself” or “this shouldn’t have happened to me” it is pure unexplained emotion no obvious emotion attached if that makes sense.
I have been quiet for a few days as it has taken these days to work out what I have just written. I was battling with my emotions.
Sas x
From: Sas
To: Mindy
Sent: April 23, 2010
Mindy,
Don’t forget when you get this I don’t expect a reply!!
It has been another learning curve I have had a few days of feeling and then being tearful on and off. I fought it until eventually a few tears escaped. I was with Steve who gives me my homeopathic treatment he explained the importance of this part of recovery and encouraged me to go with it and allow it. Accept it allow it and release it.
It was later I realized how much I had fought it and now only now I am feeling better again do I understand why?!! Suddenly overnight my life changed some weeks ago all my plans activities etc temporarily out of the window my eye sight not yet normal my hearing the same one side, my arm and leg temporarily having minds of their own or in their own little worlds I didn’t want to lose control of something else, my emotions and if I cried I might because after all I didn’t even know why I was crying?
I didn’t feel sad, cross, angry frustrated or any other obvious emotion and yet tears were welling which made me feel I was losing control of something else BUT it is simply part of the recovery process. Feel it address it and welcome it. It is a cleansing and healing.
I delayed it by fighting it so learn from my mistake.
Sas x
From Sas:
To: Mindy
Sent: April 21, 2010
I have just tried to explain to Henry. A few people have said to him "are you worried you will have a stroke now as your Grandpa and your Mun have?" ( oh how how tactful some adults can be!! AnywAy we have discussed it and how now research has shown that adopted children take on illnesses their parents have otherwise thought to be generic so it is not all about DNA and as you have illustrated and I've past onto Hebry it is awareness and then prevention. This happening to me can hopefully prevent it happening to him and later his children.
Today I could have got a bit low sun out beaches and sea lovely walks all around I couldn't get on any of them. Usually I would take the dog onto the beach if we are un Cornwall but I can't get anywhere well in the end we found a little coatal path with bits of Graval and they helped the weak leg for some reason Nick suddenly knick named Cyril slide along we got to a bench watched the waves smelt the sea air and got as close as possible watching from a distance. Spirits lifted got that wind swept look and ready for lunch.
Love, Sas
From: Sas
To: Mindy
Sent: April 15, 2010
Thank ypuondy don't worry I don't expect you to reply just trying to keep emailing when some progress or some other learning curve hoping it's what you need to hear. Sorry deleted two misunderstanding thought it HD come through several times!! Sorry when I can open them I will hopefully work put which two I have deleted!! Xxx
From: Mindy
To: Sas
Sent: 15 Apr, 2010
Hi Sas,
You certainly do take on some hard challenges. You will be very weepy and you may feel your emotions let you down sometimes. Sadly it is all part of stroke. Take Care, will "talk "again soon - am flat out at the moment.
Love Mindy
From: Sas
To: Mindy
Sent: April 14, 2010
Hello mindy
I have just had another little learning curve!! Something that I would usually take in my stride water off a ducks back but it made me shake and actually shed a tear not really cry but emotional now as I type that just isn't me normally.
We own a little house in Kidderminster and I needed to talk to the owner of the one next door. regarding very jubious waste from his previous tenants he'd dumped in our outhouse and our damp wall due to leek his side well I had been warned he is a v nasty charachter he was so aggressive normally wldtnt be a problem then when he started on at me no excuse for why I haven't returned his call for all these wks so he won't pay bill claimed he'd moved rubbish I told him there was good reason and why he replied I don't care if you have had a stroke or died this is what you are doing noe listen and accussed me of calling me a lied etc etc then said hrs got tenants who have cancer and will be dead soon horrid horrid man my age funnily enough NZ lives here owns so much property toouch money the reason I mention this is I believed I could handle that situation just like I normally could have done but I was wrong it has taken alot out of me left me feeling very shaky weak and for the first time ever during this emotional!!!
Love Sas xxx
From: Mindy
To: Sas
Sent: April 14, 2010
Hi Sas,
It is very simple - young people especially are unaware of their blood pressure and cholesterol count - two major factors in stroke. By reading your compelling story it will give them the wake up call to be checked and hopefully prevent stroke. The other part is getting people to recognise someone having a stroke - the treatment for stroke caused by clots has a very short time frame for it to be effective so getting people to hospital is critical. But then I don't need to tell you that do I?
Our website only went live at Xmas and it is getting a great response. It is updated three times a week which is essential to ensure it is current. I have got some resources for you ready to post..
Gotta rush - have to get a report out today and I haven't even started!!
Love Mindy.
From: Sas
To: Mindy
Sent: April 14, 2010
Hello Mindy
if awareness cld help prevent that would be fantastic how is that so?
My treatment yesterday was amazing if only it could be on NHS I feel they would save so much money and people would recover so so much more quickly
in simple terms this macine wakes up the nervous system and connection with the brain it talks the bodies language
it was moved down my sine and nerve endings highlighting an area wanting to kick start it communicated between there and the brain increasing frequency moved it onto the nerve sonyhing on the under arm lower where no feeling working up and down the arm both changing and increasing frequency then putting damp tissue over arm and repeating I eventually felt on nerve ending then the mire he worked I felt a little sensation in one finger and later part of little finger he kept repeating eventually my finger lifted the little finger fidgeted. We spoked telling the brain to lift the finger lower the finger as he made the nerve do it. We then with frequency did EFT regarding weight of arm being tempory strength still there all very powerful. We watched colour return to my hand first time since stroke. Also that night my hand became warm for first time he did same on leg and my foot felt like ball of fire in the night but normal to touch again good colour today they are both cooler again but not the blocks of ice they have been and color good not like dead body colur
Sas xxx
From: Mindy
To: Sas
Sent: 11 Apr 2010
Hi there,
You certainly have had one hell of a fright. Life has some twists and turns that’s for sure. Your story of your recovery is going to be compelling reading. I am very proud of you letting us do this. It is going to be a wake up call for a lot of younger people. We have to educate - it is said that in NZ 80% of strokes are preventable. Your story is going to help us get to those people before they have strokes.
Perhaps sometime in the future you could consider a local self help group for younger UK stroke survivors. Young stroke survivors are just getting one of the ground here.
If Nick or Henry wants to talk to me I am more than happy. I can also give him the phone number of one of our team if he is not getting the support locally. I can also send some resources for stroke survivors families if you haven’t already got the from the UK Stroke Association. Let me have your postal address and I will get them posted asap.
Take Care
Love to you all
Mindy
From: Sas
To: Mindy
Sent: Saturday, April 10
Me again ps
I meant to say bp and pulse back down back on track and lesson learnt. also I have to find a positive out of this situation and maybe it's time to re evaluate my job/ work and work mow on my idea re product for stroke patients obviously prior to this I wld never have had such a tht or understanding.
Xxx
From: Sas
To: Mindy
Sent: April 10, 2010
Hello mondy
sorry quite a gap between emails quite a learning curve and alot gained really so maybe best as I am very tired to just type in list form
Thursday before Easter trying physio felt quite unwell, odd head pain increased moved from right to left and behind eyes my eyes looked heavy I'm told BP high pulse 100 pain same yet not as strong where clot was physio concerned phoned go asked for home visit. I just had bp and pulse monitered and slept and ate all Easter no physio told if worsens go straight to hospital. Well the fear what if I have another when I haven't recovered from this yet? Poor nick didn't know what I was feeling had same fear as me multiplied. We actually had words one day and he was in tears he has been thrown in the deep end no support help or anything it's ok for me I have someone everyday giving me physio friends pipping in phoning bringing flowers cakes cards arriving it's much easier for me. I am surrounded by support.
Well we've come through it and learnt if it was going to happen again wld have done in 72 hours but people shld be told thus caters should.
I have also now started a new treatment alongside all my physio and OT but I have to pay for this difficult when I am not earning anything and all the bills are coming in but I need to get better and I believe this will help my second treatment is on Monday. I will write of this in future emails as I am very tired now.
I have also phoned the stroke people today as they ran an ad cpain and it has been bothering me it was to raise stroke awareness I don't believe it's worked or got the correct message accross it gives impression everyone loses total feeling in one side at once speech and when they are old then the image reverts back to normal almost making it look trivial no lasting image in mind. It does not explain how each stroke is different happens over tome and can happen at any age even a baby. I don't feel helps anyone it stopped me phoning for an ambulance I felt it was a stroke but tht of that adv and tht it can't be speech ok and I'm too young so it stopped me asking for help if it hadn't been on telly I believe I wld have phoned I feel strongly inorder to help others
well I will close now
sas xxx
From: Mindy
To: Sas
Sent: 03 April, 2010
Keep safe Sas.
Take it easy.
Love Mindy
From: Sas
To: Mindy
Sent: April 03, 2010
2.38 afternoon London is 2.38 middle of night wellington NZ not tying anymore yer not feeling v well again today overdone things. Had just leg massage and go at stairs plus hair washed blow dried eaten going back to rep head worse bp up pulse up etc head pain worse pushed myself too hard got to rest more dr said for next few days x
From: Mindy
To: Sas
Sent: 02 April, 2010
Hi,
This is absolutely perfect. We are going to put a new page on the website called Sas's story - it will be updated three times a week or as you send in stuff. Hope you are okay with that.
Love Mindy
From: Sas
To: Mindy
Sent: 02 April, 2010
Hello mindy
This is just a short reply today as I wanted to say I find what you are doing fascinating and yes would like to help in any way I can if I can. The only thing is I am typing with one hand and so punctuation caps etc all gone out of the window. Naturally I only talk of my own personal experience and as you know have know medical knowledge but cannot stress strongly enough the power of the mind. Remain at all times positive determined and keep your humor laughing is wonderful especially at yourself with people close to you.
Friends brought me hand cream and from day one I have massaged it into my hand and fingers bring moisteriser into hospital and again I rubbed it into my face all trying to stimulate feeling again I later lifted as awkward and heavy as it feels the weaker hand and tried rubbing the moisteriser in with that one no it doesn’t work but it is reminding
the brain that it is still their it is still part of you still normal just weak at the moment. Again with the leg get someone to get quite a rough towel and rub it up your leg and to rub your weak hand up your leg always going onto the area that is still normal don’t finish where you have sensation you need to maintain that connection in your brain remember you are creating a new circuit replacing the one that has died off. (Mindy you have to forgive me for telling me what you know but I type as though its being read by someone in y position not trained like you).
When you do your exercises don’t aim for lots aim for quality and always finish on a stretch findings have changed it was only a couple of years ago to use stress balls that has now been found to cause the hand to have problems and remain curled which has happened to my father’s hand his fingers always bend finish with your fingers flat.
Work on one finger at a time when you can move that well again concentrate on the next. I am on my 8^th week and working on my middle finger.
You will have not such good days don’t fight it. I will close now today isn’t a brilliant day for me my blood pressure and pulse are both up the headache increased and moved across from right to left more pain behind eyes the rapid response team say I look heavy eyed and have phoned my GP I am waiting for him to call me back now.
Take care I will keep typing if tis is the kind of thing that will help you. I had thoughtfunnily enough of writing a little book on power of the mind and recovery because its all new and a few over here my age with strokes plus I have in my mind designed a product but I have to get it made and sold to the NHS I have decided rather than worry because I am not earning mone I have to turn it into a positive it must have happened for a reason and its not as if its for ever love
Sas xx
From: Mindy
To: Sas
Sent: 31 March, 2010
Hi Sas,
Your story - your progress to recovery will be a great teaching tool over here.
When you get time have a look at our website wwwstrokemidland.org.nz. We are going to start running a series of stories and I would love to do yours - in your own words. We have a growing number of young stroke people here that I know it would impact. You are determined and that is what would be so great. Keep it going on this email so we can cut and paste so it is all your own words.
Believe me your physio rapid support team is something they can only dream of over here. Physios coming out to your home every day even over Easter. WOW!!
Look at our national website as well www.stroke.org.nz. They have some free information sheets that may help you.
We can "email talk" daily if it helps.
Clocks go back on Sunday so that announces winter is nearly upon us ....we still haven’t had rain for weeks though - the garden looks dry and unhappy!
Love, Mindy
From: Sas
To: Mindy
Sent: 01 April, 2010
Hi mindy,
Just woken up I sleep sooooo much. Good to hear stroke people good over here. I understand though that reason I came out two days early suddenly and therefore didn’t get my answers results was due to ward being on amber alert people been stacked up for so long.
My bloods showed calcium v low even though I eat large levels of cheese milk etc they were going to let me know decision also I didn’t get cholesterol results and eye specialist was returning to see me the following day none of this relayed to my GP and he knows nothing about it and now on holiday im not sure what to do.
Physio rapid support team excellent girl even coming after other girl on Friday as its her day off to give massage to stimulate sensation etc she’s fantastic. Yes you can use/mention me but in what way? what use is it, I don’t mind. Im 46!!!!!!!!!!!
Yesterday pain subsided a little in my eye but the vision is more blurred I have decided it must be positive but don’t know suddenly no one to answer some of the questions. I have been told that suddenly they have quite allot of people my age who have had strokes hence this rapid support intense program then I progress to a second one then as I improve further a third when you are much older it is just the normal rehab, im probably telling you what you already know.
Love sas xxx
From: Mindy
To: Sas
Sent: 31 March 2010
Sas,
I just dont know what to say to you. The Stroke people in UK are top of their field so you are getting the best attention.
I want to follow your progress closely so can you keep me updated. Would you mind if I shared your story here - I know you are determined and will reach your goals.
Our love to you all
Keep strong
Love Mindy
From: Sas
To: Mindy
Sent: 31 March, 2010
Hello
how are you all? Doctors have said I will make a full recovery and as you know if any doubt they wldnt say such a thing.
Visually facially I look back to normal but hand and lag not yet. I lost sense of smell never speech eye and mouth drooped tonsils and Tongue still not level sensation right side of face not yet returned had dbl vision in right eye replaced with blurred vision and pain/ pressure feeling still like that ear now feels as though full of fluid as starting to get little nibbling sensations in parts of face lost use and feeling in lower leg foot tors lower armband fingers think that covers it it was clot along with complicated migraine which also stopped blood flow to brain
Have two and half hrs physio every day including weekends even eater Sunday they say. A friend has a friend who had same and same pragram got back to driving normal work in three months that is my goal yet they say two yrs for strength fivenths sight what do you think? What do you recommend?
I am also mrdetatong snd having massage to stimulate feeling.
love to you all
me xxx
From: Mindy
To: Sas
Sent: 31 March, 2010
Write to me Sas....tell me what has been happening!
Love Mindy
From: Sas
To: Mindy
Sent: 27 March, 2010
hello all how are you. I am home and working damned hard at my physio two to two and a half hours a day then after lunch i sleep then keep on and on again practicing. a friend has anothert friend who had a stroke at 35 and with same intense physio and OT got back to normal activities although not strength in three months my target is to beat that by a day!!!! I am working sooooo hard at it
I am luck no lasting damage and id been working away both weeks prior and due to the following week!! it was a small clot but also a complicated migraine which stopped the blood flow to the brain i didnt lose speech or anything like that just sensation/feeling in right side of face mouth eye dropped now look normal but tongue and tnsils still not level (n0 0ne sees those though) face numb sense of smell went but now returned trying to think of everything as im telling an expert now i think some sensation maybe returning in face but my ear feels odd as if full of water and strange also like a band being pinged odd really dont know what that is also no feeling in lower arm and hand lower leg and foot right side did have double vision havent any longer but still blurred vision and still pain and pressure in my rigt eye just dont want to read at all and normally would read at any opportunity i just sleep so so much living like an OAP!!!!!
love from all of us
Sas xxx