Hi, I'm Jane, I'm 64 and returned home on Tuesday following 6 weeks in hospital after a big stroke (bleed) on Christmas Eve. I'm writing this with the help of my son.
I've returned home with a hospital bed, a MoLift, and various bits of equipment, and at the moment I'm only managing to sit out for up to an hour at a time. I have no movement in my left side yet, but luckily I can still speak and my memory and mind seem mostly fine (I've been doing a crossword with my son), although I struggle with concentration.
However, my limitations - particularly mobility and tiredness - are really getting me down. I'm struggling to see a light at the end of the tunnel and I'm worried about my husband, who is shattered after just a few days of caring for me. I don't sleep well and always feel like I need help getting comfortable in bed, as I'm suffering with back ache and knee pain from arthritis - but this means I'm keeping my husband awake too.
I'd really appreciate any advice or support that anybody can offer!
Hello Jane , I had cerebellum stroke 1.5 years ago , aged 61 . Similar probs , if poss due to space ? My wife decided best to sleep in spare bedroom , bought cordless doorbell , for me ,very reassuring, as well as usefully. Unfortunately I still ,with use of grab rails lower myself onto bed & then roll around into a comfy position. Being in room on my own is relief, not disturbing my wife's sleep . Worst thing is to worry ,easy said ,but does get easier. Good to have your support. Good talking David .
Hi Jane, so sorry to hear of your stroke and issues". It sounds as if you need a carer's help. After my TIA in November I employed a carer privately to help with my care and everything for a couple of hours a day. Private is a lot cheaper than an agency, mine is self employed which is less complicated. We are on pension credit and we get carers plus attendance allowance for my husband who had a stroke 6 years ago.do take references. A couple of hours a day can take a load off your husband. Life will settle down and you will start to recover. But you have to keep trying to stimulate those paralysed part, hard I know my left wrist and hand were paralysed but work now.it will get better, you will have good days and some terrible ones but we are all here to help and encourage you. My best wishes to you. Marylin
Hi Jane, I had my stroke 2 1/2 years ago. You are at the very beginning of recovery. I know it feels like you'll always be this way. But that's not true. The brain has been injured, just like if you broke your leg or cut your hand. But you can't see your brain, so you can't see the healing that is going on. But you are healing, and the healing continues, even though it seems slow. I was totally paralyzed on my left side,had to have a transfer bench for the tub, hand rails for the toilet, a walker, later a cane. But now you wouldn't know it to look at me. With physical therapy(4 months) I got better a tiny bit every day. Now, after 2 1/2 years, I am still in the process of recovering. My brain is still healing and rewiring itself. Others can't "see" it, but I tire easily, have to pace myself, need to build up energy and endurance, my nerves are jittery, my head still feels a little fuzzy and headachy. But every day I get a little bit better. My friend who had a stroke said she didn't feel "like herself" until the 4-year mark. That made me feel better. I don't care how long it takes. Just knowing that it continues to get better gives me hope. For a while I kept a brief log of what I did so I could see progress, since day to day I couldn't see it. When I looked at what I wrote down in my log, it was amazing. CBD oil helped me to calm down and sleep at night, and I had counseling for a while. Ask your doc about it. Don't lose hope. You will improve. Positive thinking does have power. My mantra was "Every day in every way I'm getting better and better". I'll say a prayer for you tonight. You're not alone. Love, Jeanne
Thank you for all the replies so far. I just read them to my mum (I originally posted her message with her on her account) and she says it's helping her to see a glimmer of light. She says it's nice to know she's not alone.
I had a bleed and stroke two weeks ago. I'm in my early 30s.
I can relate to the tiredness and pain. lack of sleep.
Is it possible to get some care in? You could ask for a care needs assessment, there are different options available. I had care needs before my stroke and already had a care agency involved with my case. They couldn't do the increased hours of care. So I pushed for a Personal assistant. PA. to help me instead of a agency. This gives me control with who I employ. What they help me with.
i don't know if this is right or wrong but I bribe myself to get up. So I allow myself to rest in bed as long as I need. At some point I must sit in the living room. Even if it's for 5 mins. If I can't do it I allow myself to go back to bed.
So sorry to hear of your stroke. Mine happened in January 2020 when I was 74 years old. Like you, my problem is mainly mobility, cognitively I was left pretty much intact, which I'm very grateful for. I was eight weeks in hospital and still couldn't walk on discharge, had to live downstairs and have been cared for by my husband, who at 87, has found it very hard going. Our son is still at home so he eventually took over the bulk of the cooking which has helped tremendously. However, with the help of community physios, I can now walk around the house with the aid of a splint on my weak left leg (I have a dropped foot) and a quad stick. I can now also get up and downstairs. All these improvements took months to achieve and one thing you will quickly learn is how patient you have to be. I also suffered low back pain which kept me awake at night. It's very hard to lie in one position on your back all night, unable to move into a comfortable position. I don't really know what causes my back pain, other than possibly not walking as much and with a poor gait. One of the physios suggested sleeping with a pillow underneath my knees and this did help with the backache. If you have physiotherapy, perhaps you could ask for advice on what may help with your sleeping difficulties.
I have subluxation in my weak left shoulder and have recently had a shoulder brace fitted; I think the idea is that it might improve my gait which is pretty poor with my left arm dangling down in front of me.
As others have said progress is very slow, painfully so but you just have to develop a positive attitude (easier said than done). Lots of people find it helpful keep a diary of their progress. I didn't to start with, there seemed to be too many other things to think about but it's really worth doing, you can then see your progress which makes you feel so much better.
Very best wishes with your recovery. Try to find time every day to sit down with you husband and just rest for a while.
There is light at the end of the tunnel.i was frightened of another stroke,anxious,couldn't sleep,felt useless,kept thinking I'm not that old why me,cried every day.but every day I woke up alive. it does get better very slowly.cry and rage if you feel like it it gets it out of your system then try to think of 1 positive thing a day.best wishes.