Hello I am new here. I had a haemorrhagic stroke in Sept 2022. It affected all my right side and speech. I was told I would make a full recovery. 3 and half years later, I have come a long way - I live independently and have a wonderful circle of supportive physio, friends and family who help me to navigate the challenges of my physical restrictions and give me a reason to keep going. But no way am I fully recovered. It is an effort to walk, it feels like I am dragging an unwieldly sack of potatoes or wading against a strong tide, its tiring, and my right arm feels as if tightly bound up, though I can move it. I was walking better last summer, before a fall off a kerb. I think that dented my confidence. I think I am tired of the continual struggle, and would like to know how other people have coped, and does this heaviness ever go?
Hi @Caro2 and welcome to the community. Sorry to hear of your stroke & the struggles you have had, it sounds like you have made some good progress even if you still have a way to go. I am 4 years on and still struggle with walking. My leg drags behind me and like you say it is exhausting. I find I can cope ok around the house but when I am out and about it is a real struggle. as a result I bought a mobility scooter which has given me more independence. I donât use it if I am only going a short distance and I have plenty of time as I still want to walk else I wonât improve. However, I use it for longer distances and just to help me keep up with whoever I am with.
Try not to let your fall knock your confidence. Itâs understandable why it has but people fall all the time. I was well known for it prior to my stroke 
.
I think however much we adapt to our situation and live life as best we can we all have those times where we think weâve had enough of it. Hopefully those days are in the minority for most of us.
Will it ever get better? I donât think any of us can say for sure. I do believe though that we continue to recover forever even if we donât notice the changes at the time.
I am sure others will be along soon with better advice than I have.
Best wishes
Ann
Thank you Ann @Mrs5K for your kind words and sharing your experience. I see how this online community can be a great platform for support from people with similiar issues . I have to keep going, and I understand everyone âprogresses â at a different rate. I guess it doesnt help that I am 75, therefore âoldâ. It was an eyeopener to read of people much younger than me experiencing a stroke.
Hi Caro2. Well I am older than you and I think age holds us back. I seem to have gone backwards in the last few weeks and have no idea why. I am over 3 years post stroke and still walking with a stick in the house and definitely outside. Personally I have yet to meet or hear of anyone who has gone backwards to how they were pre stroke. I too have a dead left arm and hand. If you have a stick in your good hand and keep dropping things in your dodgy other hand life becomes very difficult. Eating out is sometimes embarrassing as I cant use my left hand to cut anything up and food definitely doesnt go into my mouth but more often up my nose! I now just use my good hand to feed myself. I watch people walking or even running and think why canât I do that?
I have an amazing husband who looks after me so well even though he is almost 90 and not in very good health. The thing that annoys me is that once you leave hospital thats it. I had great physio from the Community Stroke team but once that finishes you are on your own. I am paying my own physio and thats fine Im not complaining but I cant find a neurophysio in the area and although the lady I am seeing now gives me exercises she knows very little about strokes. I just feel it would be great to have someone you could get in touch with if you needed advice or just to talk.
Anyway thats all my moans now - bet youâre relieved about that! - keep in touch and hope things improve soon. As Bobbi used to say âKeep on keeping on!â Janet
Why Hello ! I also had my haemorrhagic stroke in September 2022 : I am recovering week by week, but still have a long way to go. Also plenty of struggles against the tide, though it used to be so much worse. Hereâs my story https://youtu.be/mVjgv4S8qWY
Hello Caro2 - Nice to meet you. I am not sure I have seen many on this forum who have been told they would make a full recovery. I could be wrong, but most are told they are unlikely to make a full recovery - I expect someone will correct me in case I am wrong.
The reason for me to mention this is that if you have been told you could make a full recovery then this is rare and great for you. My guess is whilst you were told you could/would make a full recovery, a detailed rehab/recovery plan was not created? If it had, then I guess you might have had some milestones to check progress.
You mention a supportive team and I wonder if there is anyone on there who can help you with understanding what progress you have made, what further progress you can make and what if anything is holding you back from making a full recovery.
My view is that you certainly can make the full recovery, but some help and guidance would be required, which btw you say you have and so it is a matter of setting expectations. As you are 75 years old, maybe it might take a bit longer, though age may not necessarily be, nor should it be in my view, the best indicator, but rather your health condition would dictate how long to full recovery. Added to that, as we age other problems start to affect us which might impact the stroke recovery.
Whilst the fall has dented your confidence, I would hope that you can put this behind you and review where youâre at, where you would like to be and come up with a plan with your team and continue the path to full recovery.
I really see no reason why you cannot do it. You are 75 years old and whilst some might see it is old, I am a carer for my Mum who is 20 years your senior and she is working towards a full recovery though she does not have the extent of support you have. She (Mum) is expected to make full recovery and if she can, so can you.
Itâs up to you to decide if you would like to carry on or not.
I wish you all the best.
Namaste|
Hi @Caro2
Welcome to the community, Iâm sorry to hear about your stroke and that youâre recovery hasnât been what you were told.
Youâre definitely in the right place to get some tips and advice about how others have been coping with their recoveries and the heaviness youâre feeling. I hope youâll find this community helpful.
If you need anything whilst youâre using the Online Community, please donât hesitate to tag me using the @ symbol and my username.
Anna
Hi @Caro2 and welcome to the forum. I too was told the same thing 5 years ago.
Iâd had a TIA, mini stroke, I would fully recover but donât drive for a month blah blah blah; 5 years on Iâm still recovering. How he imagined Iâd fully recover in a couple of months, Iâve yet to figure out. I had no speech, I had an arm in the handbag holding position, it could move but I couldnât do anything with it. And my leg couldnât hold me up let alone walk.
But Iâm fully independent now, speach is okâ-ish, I walk no problem, drive, workout at the gym 5 times a week etc etc etc. But I do still have deficits, they are still at work in progress. Iâm 63 by the way.
The heavy leg syndrome was sorted out about 6 months after the stroke. My gp had my blood checked for any vitamin deficiency and found I was seriously low in folic acid. I was prescribed a high dose for 2 weeks and told to continue with an over the counter strength from there on. That cured my heavy leg within a few days, it really was like a breath of fresh air. I could walk without so much drag from the leg but it also reduced some of my fatigue so that I could do that bit more in the day.
Heavy leg syndrome is a sign of nutrient deficiency, but only a blood test can tell you which one. I know some survivors have been low in iron or B12 and they too can cause heavy legs. And that tightness in you arm could be another indicator.
A slopped insole in your shoes may also help with walking, if you have any foot drop or you foot is prone to rolling due to the weakness in your leg. I have one in all my footwear, I took the existing insole out of my trainers as it was too thick and them too tight to wear.
Howâs your balance and stability and are you doing any excercises to improve on that? One practice you should get into at home is getting down onto the floor and getting yourself back up again. Not only will this strengthen your legs but also help boost your confidence. Worth giving it a try.
Lorraine
I take time out and focus on simple pleasures and amplify those so that they are more meaningful than my daily struggles.
@Caro2 Stroke is a ongoing issue to recover forever, there is no end point and when you were told, you will fully recover, that was a ludicrous statement for anyone to make 
, how do they know you will make a full recovery? Can they see into the future 
? NHS were sht with me, but that was better as I made all my own decision, I did not research the f**k out of stroke and just set myself challenges. Does not mean I was right but that was my way to cope 
. I dont like being told and the NHS are giving you text book quotes. I can say to someone as a stroke survivor this is what I did, unless someone in NHS has suffered stroke they ainât got a clue and also I did not want people visiting me at home i wanted to go to them to be seen as I wanted out and I have the most amazing wife who will drive me to end end of the earth and back. If I would have let them visit me, they would have said your shower room is unacceptable, you need this and that and your studio is unacceptable, So I did all my own things and I am doing really well atm, hiccups along the way, but onwards and upwards. Have a great day 
I moved to a ground floor, but that was my choice not because someone told me to I did not want to be treated like a stroke victim and that is what NHS do I wanted to be treated as a stroke survivor nd that is what this forum does and my WhatsApp group which is a spin off from The Forum
Hi. I see you fell outside, sometime last year . Were you seen then by A and E or doctor or physio? Maybe someone here may have advice or experience of this problem.
@IreneFC , bravo. I bet your dealings with these people have left them speechless.
@Shorn who is this for?
Its meant for Caro2 but as I could not see as I typed due to technical issues, I am supposing, it ended up in the wrong place in the chat.
Its not so much an eyesight issue but that sometimes an annoying bar pops up right across the screen and blocks the area i am typing into. It may be that i needed to clear my cache and i have done that now. And not getting that.
Thanks Janet @Apple for your response, by the replies I am getting, I see how finding a community of fellow stroke survivors, makes me understand that I am not alone in my particular struggles, and that it can take years⌠we all have our own particular road to travel, and its not a straight one!
Re Physio, yes a great supportive team for first few weeks after returning home. I now pay for a private one, who is a neurophysio. A great find. And she really keeps me going. Thank goodness for her. Your phrase âkeep on keeping onâ is a big challenge. Dont you get tired of the daily grind? Best wishes Caro
Thank you @pando for your response. I watched youtube story with interest. Seeing a similar journey of those first few weeks. and you consider yourself still recovering. No quick fix. When the consultant told me I would make a full recovery, I understood that the stroke was just an inconvenient blip in my life and I would soon be back to normal. I guess I was still in shock, and couldnt really process the reality the situation and the a possible slow journey towards the âfull recoveryâ âŚ..
Interesting when you talk about your hand mapping, would like to know more.
Thanks
I too had a great neurophysio for about 9 months who I paid for. He was expensive but worth every penny. Then he got another job at a different hospital and couldnât come anymore. I could have cried - he was dishy too! Unfortunately there are no neurophysios in this area now. 
Hi @ManjiB, thank you for your supportive words. The consultant gave me to understand that my recovery woud be a matter of weeks. As it is now over 3 years, there is that part of me that feels I must have failed somewhere along the line to live up to expectations. Why havent I recovered as much as I was given to understand I would. Could I have done better, etc. etc. Yes I have an daily exercise regime, go to an exercise class, have a regular private neurophysio (a godsend) do Girotonics, do Qi Gong regularly, walk ,even âplayâ table tennis (not like I used to) with a group of accepting friends. I am often been told about the progress I have made, and physio tells me I am one of her high achievers. But it is this constant heavy weight, tiredness and struggle with absence of flow in my body that doesnt seem to improve.
All best wishes for your mum and her recovery.
Hi @Anna_Moderator Thank you. Yes I think I will find this community helpful. Its been a long time finding it, but glad I have
Caro