Osteojo,
I certainly understand what you are going through. I had my ischemic stroke over 5 years ago and lost my right side, arm, leg and language. I could make out words as a group of shapes - and one of the groups I knew said "Exit" but I couldn't read it. But over the next few weeks, I was able to increase my "vocabulary" by reading all the signs in the ward. I had speech therapy but that was frustrating as 2 sessions a week saying "mmmm" and "ddddd" did not seem to be helping me to speak.
Then one day I managed to get my wife to understand that I wanted my iPhone. I used it and Siri, the voice assistant, and the video camera to slowly say the "words" that I could recognise until Siri could understand them. I used the camera ( thank god for icons) for selfies so that I could see what my mouth was doing. After 6 weeks I was moved to a rehab hospital for another 12 weeks where I worked on my speech and managed to shuffle a few steps too. But my sessions had to be short as they exhausted me. 5 years on the new me is enjoying life by accepting my limitations - and I still get exhausted by simple tasks, so I take a nap. I was 72 when I had the stroke but was very active in the community, and I wanted to get back to my various tasks - but my neuro physio eventually convinced me to live a rich life with the new me.
I found I couldn't take part in meetings or give lectures because, although I could think clearly, by the time I'd found the words, composed a sentence, worked out if I could say it, and simplified it so I could say it, the conversation had moved on. I'm a little better now but not the speaker I was. But my physio/friend ( as she now was ) encouraged me to accept the "me" I was now and not rail against it... and now I'm 76 and life is good. I still consult occasionally ( for money sometimes ), take slow walks with my ex-physio once a week and "talk" to several stroke survivors.
The problem with sites like this one is that after reading several posts you feel suicidal - and its hard to find a site that is positive so I've just lurked on this one until I have felt that I had something positive to say. I usually "talk" by email to about half-a-dozen new friends in the UK, the USA and Europe. The problems of stroke are international. But the common bond is the fatigue! Don't fight it.
I know exactly, have been through the same and we are both the same age. I had my Stroke while staying with my Son in Canada,where in Hospital I did have a brain scan and three days on a ward, since retuning back to the U K. I did have another scan, otherwise nothing apart from the same prescription as the Canadain Doctors suggested this happened in July 2017 . Being tired is not what I thought retirement going to be, as till I was 70 I was Nursing. Faith Davison
Hi Jo. My brain was my tool too. I'd just finished an MA and was planning to do a PHD (no way could I retain anything new now). But my main work was a playwright. Ideas used to trip off my tongue/inside my head all the time but they stopped after my stroke (I have significant brain scarring). 18 months on I still get confused with words/concepts and the SF compounds the problem. I can force things out but it isn't an effective way to be imaginative!! However my gp/pharmacologist has prescribed Vitamin B12 cyanocobalamin(an effective brain food apparently) and it has helped. My thought processes are speeding up! Might be worth looking at?
Dear Jo/All - My stroke occurred overnight on 28 Dec 2018 and severely affected my left side and limbs but I was fortunate in that I retained my speech and ability to eat. Thanks to the hospital team I was fairly quickly able to stand and then walk a little with the aid of a 'quad-stick' & since returning home in spring 2019, I've managed to keep up with physio and rehab to the point where I can now walk without an aid for 20- 30 minutes or so.I've always found that fatigue inevitably sets in every day and I need frequent rest periods - sitting down and trying not to think too much - 'mindfulness' - as undertaking written or interactive work burns energy fastest - it's definitely the case that if I do not manage at least one walk in the outside fresh air I'll feel more exhausted later and the following day. Conversation also takes it out of me - I didn't realise until now how much effort (breathing-wise), conversation takes - so I'm not sure yet whether or not I'll ever be strong enough to return to my very demanding job (running a team of specialist compulsory purchase surveyors and advising corporate clients on their complex compensation claims and best strategies for coping with the dis-possessions).
I find the fatigue very frustrating and it is the symptom which is least visible to others.Exercise and fresh air helps and short rest breaks to re-charge, rather than full-on 'naps', which I've managed to avoid in the main.There's also no doubt that each day is a challenge and on some days it feels harder to face the challenges of daily life (physio exercises etc) - but I'm hoping that persevering will gradually build my muscle strength and stamina back to useful levels, whereby fatigue will reduce - but as with every stroke victim - it's a very personal and novel experience, which we each have to get through as best we can within our own individual circumstances - there are few,if any, 'one size fits all' answers - though a supportive and sympathetic partner & close family support is worth so much in fighting back from the set-back and impact on 'normal life' of suffering a stroke or brain injury - as also is retaining and nurturing your sense of humour!
Best wishes to all
Chris
Dear osteojo I read your post and sympathised with it, particularly the part about conversations moving on. I say that if we could communicate by telepathy people wouldn't know I had aphasia! It is three years since my stroke and at times it is very tempting to say nothing and just listen. I took a more beligerent approach and tried not to shy away from awkward situations which required me to speak. I am fortuate that the members of my Rotary Club are all sympathetic but at the same time still take the mickey out of me which makes me feel good that I am still one of the club. When I am put in a position where I have to think about what I need to say and have to say it, it is still very fatiguing after the event. You make an imortant point in that the use of emails to communicate is one way to overcome the issue where you can take time to think and get your ideas over without feeling under pressure.
Hi I had my stroke in January 20. I think it was the result of nursing my husband for nearly 12 months after he broke his back. I had no disabilities whatsoever but found I was extremely tired all the time so much so that I didn't have the energy to shower in the morning. It was a big effort to get out of bed.
i couldn't get myself going and would have a lie down each afternoon. But the lockdown helped me because I didn't have to go anywhere not even to the shops and couldn't meet people.
im gradually feel less tired but can't do housework but no one is coming around which is good. I take the dog for a walk but I'm still terrified of having another stroke
Hi I had my stroke in January 20. I think it was the result of nursing my husband for nearly 12 months after he broke his back. I had no disabilities whatsoever but found I was extremely tired all the time so much so that I didn't have the energy to shower in the morning. It was a big effort to get out of bed.
i couldn't get myself going and would have a lie down each afternoon. But the lockdown helped me because I didn't have to go anywhere not even to the shops and couldn't meet people.
im gradually feel less tired but can't do housework but no one is coming around which is good. I take the dog for a walk but I'm still terrified of having another stroke
Please don't describe yourself as a victim. You have survived a major trauma and are rebuilding your life. I refuse to describe myself as a victim. I am a survivor.
Janet
Thank you. I've slept all day and watched TV this evening, bed is calling again
Thank you. I hit most of the markers on Sunday, especially facial droop. So pleased that resolved very quickly.
That sounds horrific, I'm so pleased you are doing better now.
That's very much how I feel, and it does help to know other people feel the same. I've spent all ifctoday apologisingvto my partner that I've not made a cuppa, washed up, done anything. Let's hope we can all get through this together. I had a great OT before COVID hit, really looking forward to working with her again.
It must be hard doing this on your own. I don't think there is anywhere near enough awareness of post stroke fatigue, it wasn't until my GP got me in with the neuro rehab team that I'd heard if it, other than a SA fact sheet. I really should contact them. Their website has got me through so many hurdles and worries. It's good to talk
Thank you, it really does help to share. I lose words when I have SF too. Very awkward as I'm a university lecturer - but I tell my strudents about the stroke. Most times I know I've done it and correct myself, but other times I don't, but work it out from the sea of confused faces!
im trying to be as open as I can with friends and colleagues, but there are that minority who just don't hear what I say, even when they listen. But slowly it will improve.
i hope you are doing ok
I'll talk to them. I'm not deficient in B12 (I've been checked for everything), but it's worth a try. I'm so sorry your dream if doing a PhD has been put on hold. Maybe in time you'll have that opportunity again, maybe it isn't meant to be. My brain certainly processes things very differently, but it's really hard to describe. I forget my train of thought easily, especially if I'm interrupted. I'm often asking people what was I saying / doing! Thank you for reaching out
It is so frustrating that the fatigue is so invisible - although there are times close friends and my partner can see it hit me. I've really got out of the habit of walking (I did a lot of Nordic walking with 2 poles early on in my recover, to build my stamina and strength in my leg). Recently I've been gardening. I think I'll try and build in some short walks once this extreme fatigue has passed. Thanks for replying, and I hope you regain strength and energy
I know what you mean, I'm terrified of getting ill again. Keep that fatigue under control - mine brought on a stroke mimic at the weekend, all the symptoms came back, I was petrified. Thankfully the scans came back clear, and I'm back home again now. Good luck with your recovery, it seems like it really is a long haul
I had a TIA about 15 years ago and was in hospital for 12 days. On discharge, I could only walk about 8 steps before resting. I found the 12 days in Royal Perth Hospital absolutely terrifying. There was no clear explanation of what had happened or what the future might be.
I had a huge sensitive hot lump on back of my neck. My wife had to bring in a fan in from home. She set it to blow cool air on my head so I could sleep.
I have found the northern hemisphere stroke support websites very helpful. Thank you all and my best wishes to you all.
To see the comments here about fatigue is a relief and rings true with my experience.
Typically, I will be able to pick a bad day for tiredness on awakening although it can just arise at any time.
On the upside, I can do most daily household tasks, and still play the piano as poorly as I had before the stroke.
My best wishes to all
Keith
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Hello
I find all the comments very useful. Often other Stroke Survivors have gems of info that are very helpful and were not things that I had tried before. But turn out to be great ideas, we are a very resourceful bunch of folk!
I had a Hemorrhagic Stroke 7 yrs ago followed by further difficulties caused by disrupted blood supply in another part of my brain. Luckily I had a long period of time in rehab unit but like many, rehab and recovery is a very long process. Return to work not possible.
I have big difficulties with fatigue and poor stamina. These things have helped me alot
- a regular nap each afternoon 45 mins work well for me. I now accept I need this like a mobile phone I need my battery recharged!
- a small daily walk or time outside. I set a task maybe a walk to get a paper or time sitting outside
- a schedule for the day. With a few tasks that I want to do. I always rest in between tasks
- I sit down for most tasks. Ironing, cooking, gardening in raised beds. Seated Yoga class. Do most things without bending or standing. I worked out with OT using daily dairy what tasks tired me out most. Bending , standing and lifting were worse. So I use a slow cooker on my table top for cooking, buy chopped veg where possible. Get shopping delivered using online order system. My constant question is how can I do this task in an easier way for me? I usually come up with a good option.
- I keep well hydrated with drinking water. This helps a lot. Stops headaches to.
All these things have helped greatly. Some days are better than others but now I don't beat myself up about needing to rest or not being able to do something on a particular day. Tomorrow is another day and often I can achieve what I want to the next day or later in the week!
Hope some of this is helpful. Very best wishes to all.
Julie
You are very welcome Jane. I often have read posts and find drawing on other people's experience has helped. I have also found that difficult days are part and parcel of stroke recovery, I use to get very upset and frustrated but I found that once I just acknowledged that ok today I am not in peak performance mode! It was easier then.
My best wishes for your Stroke recovery..
Julie