I had my stroke just over 2 months ago age 54, while at work. I’m a psychiatric nurse of 36 years and due to retire next April. I was running a clinic giving patients injections when I started feeling like I had been drinking 2 bottles of vodka! No warning, no pain, no loss of consciousness. Just felt and sounded drunk and wobbly. God knows what my patients thought cause I sounded drunk as a skunk. Anyway,I was whipped away to hospital in the back of an ambulance where I spent 8 traumatic days in hdu while they tried to get my bp down cause the area affected by the bleed is the are that regulates blood pressure. Took my bp every 30 mins and wondered why I was so tearful and anxious. Sleep deprivation perhaps?
I know I am very lucky as have been left with very little residual stroke problems. Very very slight right sided weakness, speech back to normal, bp more or less behaving. I guess I am just so surprised at how tired I feel almost all of the time. I hanker to go back to work as in my head I see that as ‘normal ‘ and I am now having to look at a new normal of feeling like I need to lie down as I’m so tired and I am aching from top to toe. It’s hard being on the other side of health care, being cared for instead of what I am now having to get used to, being the giver. I miss it and miss my patients but I am no use to them the way I am just now and am likely to have a wee cry in front of them instead of be me, the nurse able help them, and am barely able to help sort myself out.
This is turning into war and peace, and I am aiming to be positive and get back to some semblance of me whatever that is, reduce my anxiety.....been hellish since this happened, worrying about what might be, and plod on and recover day by day. Onwards and upwards!
Take it easy tiger! You sound very positive and I'm sure you will make great progress, but continue to get plenty of rest in these early days - your brain will thank you for it in the long run. xx
I too had just reached retirement and the stroke then bit me. Retirement was by far the best part of my life, and I guess i feel cheated to only get a couple of years in. But I did get chosen to live when so many die.
I would guess that many of your caring attributes will stay with the new Lawla. Perhaps you will get to do work at something different. I do voluntary work in tiny amounts, but it does make me useful to society and it helps me with dexterity. I started with making tea then serving at tables. This taxed my new abilities to the hilt and I needed help cards to remember any of the details. I am now managing without help cards.
Anxiety seems to get most of us. And of course the dreaded "post stroke tiredness". Wow that needs a better title.
I enjoyed your version of war and peace. Much better than the original.
The tiredness associated with stroke is unavoidable and is the one common thing that all victims complain about. It does reduce somewhat but i'm now in my fourth year and have to be aware that at any time I can feel exhausted. I am in the fortunate position of being able to seek my bed at any time this happens and just 'crash' for half an hour.
My husband had a major Stroke on 7th February 2017. He was so delighted with the NHS response, - from the paramedic arriving to the speed with which he was given the thromboliser, ie within the hour, that he contacted our local newspaper. I hope you get the chance to read the article. I’ll try and post it below. However, Stroke Fatigue has been a major stumbling block in his recovery and it has hindered progress. It is humbling to see how much other people have survived this change in their lives. Thank you all for sharing.
I know that he was discharged within the week but since then progress has been very slow. He drags his left leg and his left arm sticks out at an odd angle when he’s walking. Movement is quite slow although he can still get out and about. He can no longer drive as he has left neglect and that has battered his confidence. It is certainly a life changer for both of us.
Thank you for sharing how well the NHS performed. I read the report you linked to. My experience was the same. I live in a village several miles from the hospital and thats a hospital with terrible press.
I awoke one morning and I was paralysed. Although I thought FAST was all those symptoms, whereas it says any one of those symptoms, somehow I knew it was a stroke. Wife rang 999, got straight through and the advance medics were here in 2 minutes. I have no idea how they got here so quick. Ambulance followed in 5 minutes. Staff at the hospital were out in the cold as the ambulance drew up. Straight in to a dedicated resus room. A dear little nurse was allocated to me and she never left my bedside until the ward sister came to collect me.The performance of the stroke unit at Colchester hospital was superb. I was home in 5 days, with an early discharge home package.
On day 3 I was blessed with a miracle. I got up and walked (staggered) out the ward and up the corridor. Up till then I couldnt move at all, couldnt even sit up.
The NHS support disappears fast (pun intended). Recovery is so slow.
I was 68 when the stroke bit me. I can drive and can now even get up a step ladder. So dont give up, keep at it. After three years I am still recovering but it is getting slightly better every month. OK I still only drive for perhaps 20 minutes, but that gives independence. Wife doesnt drive so its quite relevant.
Most of us can get our physical movements going OK, even if it takes ages. Keep at it. For a minimum of 2 years there will be nothing wrong with our limbs, its just the messaging system that is bust. The cognitive side is trickier, but every one of us is different.
Yes, life changes in an instant, yet it took me ages to grasp that.
best wishes and do say hello to hubby
Hi John, stroke is a life changer, that's for sure. However if you read the stories that have been shared on this site, you will discover that there's always hope. The post-stroke journey is unpredictable, and we can't always know what is happening inside, we just have to trust the brain to do the right thing and to support the brain by allowing it to rest and to figure out how it will re-boot itself. Just today I read on the BBC website, of a man who suffered a stroke, and was unable to speak for 4 years. He suddenly woke one morning and discovered he could speak again, so never give up hope! Keep working on your exercises, and have plenty of rest, if you push too hard you'll pay for it the next day (or even days).
Best wishes, take good care xx
Hi. I had my stroke two and a half years ago and still have after effects, especially fatigue. I have to rest for one hour around midday. Driving is not an issue, as I do not drive. However, I have to rely on my partner to get out and about. I would like to attempt to get a bus down to town, but he will not let me go alone.
My left side is still weak, but I have an FES machine (functional electronic stimulus)on my left leg below the knee and this stops me dragging my foot. However, not every NHS area funds this. I also had extensive physio for arm and leg, which improved things enormously. I now go to three exercise classes a week.
Recovery after stroke varies from individual to individual, but you have to keep working at it. I had to learn to walk again and to do things like typing shoe laces. I now cook daily, bake, do a little ironing and a bit of cleaning. I do get my down times, but I will not give into them.
Please encourage your husband all you can, but be aware ‘tough love’ is sometimes needed. Recovery is usually relatively fast at first, but then slows down and may take some years. I wish you both all the best.
Thank you for your reply. I’ve read the responses out to John and he’s nodded acknowledging them. Maybe he’ll read for himself one day. Veronica
Thank you Nic, you’re all very encouraging. John has listened to all the responses so that’s a bonus for me.
There is a very interesting piece of writing called "A letter from your brain" - try googling it, it's very powerful and it contains some good advice. You might also need to have the kleenex close by, it's very emotional!! I re-read it almost weekly as it gives me an insight into what is happening in this strange post-stroke situation.
Take care xx
Veronica, Stroke is a very traumatic experience for both the survivor and the partner. It is frightening and the fear lingers, but it will ease with time. My consultant said to me at my review, ‘Although you are not yet the person you were, remember to be the person that you are now’. This is easier said than done. In time, I hope John and yourself will be able to compare his progress to the low point from which he started. I take everything one day at a time now and live life to the full as much as I can. Best wishes.
this information might also help. https://www.mstrust.org.uk/a-z/functional-electrical-stimulation-fes#who-can-use-fes
Thank you Colin, your experience echoes our own. John amazed the Consultant by showing him he could walk so was discharged into the Community after only six days. I had to chase up care but the OT and physio were very supportive although their time was very limited. I think that if we’d had any professional follow up it might have encouraged John to be more consistent in doing exercises but he only has me, the nag!! Lol! He doesn’t like me telling him to ‘lift that leg’ or ‘drop that shoulder’, ‘swallow that drink’. Ah well, we’ll get it sorted eventually,,,,,if the fatigue will allow. Thank you for taking time to reply,
I had my stroke in March this year. It was my first experience of an illness that was not going to recover by its self. I was paralysed down my right side for the first six weeks post my stroke. Week 7 I started to make some progress and I have continued ever since. But as everyone on this site will tell you you only get out what you put in to the recovery programme. Basically lots of hard work.
So please don't stop encouraging John ( nagging ) it might take a while but it will pay dividends.
Hang in there!
I hadnt taken on board that John is 20 months in. I think counselling or therapy are highly beneficial and at 20 months it is still desireable. I had counselling and it helped a lot. I go to the local stroke group,, which in this area is not the SA, and that group is very helpful. Shame it is too far for me to easily access the group, I do not travel well. And I go to group relaxation sessions where I learn a great deal.
I am not convinced that we should push ourselves. The need for rest is also relevant. I struggle with this. My SF is worse than average and it makes life so hard. My physical side isnt too bad, yet again I think I have failed to do the relevant exercises whatever they might be.
It seems to me that no one knows the answer. Research and support for stroke is very poor. Compare that with other ailments, where research etc is carried out at a pace. There is still a widspread belief that strokes are what old people get when they are about to die. SF is a big issue, yet no one has categorized what SF is like let alone how to recover from it. The fact it is defined medically as "post stroke tiredness" relegates it to the trivial.
So we must be the cutting edge. And get what we can from our lives.
For a start it would be nice if we could identify ourselves as TIAs/us lot/those with permanent disablement. Each one of us is different an no two strokes can be the same, it would however be useful to group us separately.
We will get the best we can. Be positive, Smile. Nome of us are alone
Your post has really hit the spot with me...I'm a community nurse aged 46 and was at work too when I had my stroke 6m ago..be been left with weakness in RT hand and some concentration problems so was very lucky but dreaded tiredness was big issue..went back to work on phased return after 3 and a half months but struggled...no longer able to join in office chatter as can't multi task and triple checking and having to conetrate extra hard whilst out on rounds..to cut a long story short...now off sick again as it all got too much..now confidence reduced and thinking of going to have to make some big decisions as not able to do my job as I normally like it done and would hate to make mistakes.. Your comment about us being the giver is so right I'm really not good at being on the other side!!! It's good to hear what I'm feeling is not unique...so thankyou xx