I didn't have any understanding of what was happening to me

Hello there,  I am 63 years old and had a stroke, at work, on 6th January 2021.  As I work alone for a small company, no one was there to see what was happening.  The morning went as it usually did, shower, breakfast, drive to work, respond to emails etc.  Then around 10.15am I was violently sick and had an upset stomach.  A few minutes before I was fine.  There was no headache.  After a short time, I noticed I couldn't walk properly without tripping, but blamed that on the new boots I was wearing against the carpet tiles.  I fell against many things, including the toilet, and broke a rib.  In my head, I thought I had got Covid (now dehydrated).  Didn't occur to me it could be anything else. 
To cut a long story short, I text messaged my son and daughter later in the afternoon.  They collected me from work and suspected I had/having a stroke.  I later found out, they called the NHS at 5.30pm.  The ambulance arrived after 10.30pm.  The roads and pavements were icy, so many people had fallen and broke bones that day, the ambulance service were very busy.  I arrived at the hospital around 11.30pm and was admitted to the stroke ward at 3.30am the following morning.
It's been six weeks now and I cannot remember much of that day - what I did until my children came to collect me.  I still cannot believe I didn't know what was happening.  I blamed it on Covid and didn't have the sense to understand I had had a stroke.  I remember small flashbacks, like when the paramedics arrived, being CT scanned, and feeling so much pain with the broken rib when lying on the table being x-rayed.
Now, I am too scared to go out walking or go anywhere on my own.  I worry the same thing will happen again and no one will know or care.  I know I need psychological help, but there doesn't appear to be any available for me, as there are aparently so many Covid patients who need this kind of help just now.

I wanted to reply to you as I know what it feels like to be scared of going anywhere on my own. First of all six weeks is a short time to expect to be back functioning again.Recovering from a stroke takes time. The psychological help you can't get would be CBT in which you face your fear in stages doing only what you feel comfortable with and building up from there. I know you will get contacted by other people who know more than me. Don't beat yourself for not feeling ready to venture out alone. Best wishes Hilary 

If you're afraid to go out on your own my advice is to think like a kitten venturing out for the first time. Only go as far as you feel comfortable, even if its only to the garden gate, then go back home to safety. Keep doing the same route/distance until you're used to it and feel ok with it. Then, and only then, venture a little further. You'll get there. Another option is to get a support worker who will walk with you so you feel safe. I have one from a national charity (or I did until covid).  

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Hi BrendaAnn,  so sorry to hear about the stroke and in such scary circumstances.  I haven't had a stroke, but strangely I came to dread Tuesday evenings, because that was when my husband's stroke occurred.  So our reactions to traumatic events can become very ingrained in our memories. I was also concerned about leaving my husband alone all day, whilst I was at work.  So just to say, it's not surprising that you have these anxieties about leaving the house/being alone.  

You have received some lovely replies, and hopefully it has given you the reassurance that you will feel better as time passes, and your confidence will return.

Hang in there, stay strong xx

Hi BrendaAnn - I'm also a Brenda! Not many of us around now :)

It is scary when you venture out on your own. I was told to do the lampost walk.  Venture to the garden gate/front door then to the end of the drive or the first lampost and then come back.  When you feel confident about getting to the first lampost and home, try the second lampost and so on.  Always take your mobile with you - my fear has always been what if I fall when out walking but I never have.  I always walk close to garden walls too so I have something to steady myself on.

You've been through the mill what with breaking your rib as well as the stroke.  Hope you are mending a bit.  I know how painful that is as my husband fell off our garden wall about 5 yrs ago while trimming a tree and broke 4 ribs. 

Talking about ingrained fear and things that bring all the memories back - we had just eaten haddock fishcakes for tea when my arm went down like a lead weight and I couldn't move it.  We have never had haddock fishcakes since LOL!  Stupid but I fear having another if we eat them and I know they will never taste the same!

Hi

I had my stroke 2.5 years ago. I had balance issues and walked with a stick for 6 months, this got better I made a full recovery and returned to work partime. 

I'm still suffering from really bad fatigue and when I get over tired my left side goes weak ( that was the side that was affected by the stroke). I have now balance issues again it feels as though I'm going to the left and falling foward slightly.  I have had my ears looked at, had antibiotics for sinus and all that is ok. I have had a CT scan all ok I was wondering if any one else has experienced this.

I'm feeling  really down about this as I love walking but really scared of falling over . Is this normal  would love to hear from anyone who has experienced this.

Thank you in advance.

 

Dear Jenny

I think going backwards may be normal. My stroke was in 2017. It was really only minor because I ended up with mild gait ataxia. I walked with a stick then a bit on my own but got in the habit of holding my husband's hand. I wonder if it's real or psychological. I shall look forward to hear from other people. Best wishes Hilary

Dear Brenda,
so sorry to hear that a stroke bit you. Welcome to the forum. 
i feel so desperately sorry for anyone having a stroke in the past 15 months or so. The Nhs do what they can.

Can you tell us your diagnosis ? The hospital will write to your GP and you should have a copy. If not then ask the GP staff to send you a copy. Staff can do that, you dont need a doctor for this.

Hang on to the copy letter. You will need it at times.

please try to convince yourself that the stroking is over. It was probably over by tea time on that fateful 6th January.

please convince yourself that you are out of danger. The first month can be vulnerable but you are well past that.

So now its recovery time. A long and drawn out recovery, but things get better.

My memory of the six months up to stroke got wiped out. So it would be reasonable to assume your memory of 6th January is wonky. But thats all over. Dont dwell on it. 
Now its recovery time. 
you might like to keep a diary so you can see your progress. I found this very helpful, not least it tells me how much recovery has happened. Its slow so you dont really notice the tiny recovery of each day.
You dont need physcological treatment, but you might find something useful as you travel your journey of recovery.

i didnt know what  a stroke was. Yet i seemed to know that i had had one. I eas 90% paralysed so i guess that made things easier. I live in a village half hours drive from a hospital, but they got to me in two or three minutes. 
if you havent got the str0ke association leaflets then a call to them will provide you with some very helpful booklets. In language i could understand.

You are not going to have a second stroke. 
one is enough.

things do improve

smile a lot

you are not alone. Many of us are on the forum and we understand what you go through.

best wishes

colin

Hi Colin, and all who have sent me nice reassuring messages.  Thank you. 
Very much appreiciated.

I was told by the doctor at the hospital I had had a brain bleed, on the right hand side of my brain. This is why I lost control of the left hand side.  My blood pressure was off the scale, mostly due to much stress at work, and family bereavement.  Thankfully two types of BP medication have reduced that to much better readings. Still too high, but getting better.  I bought a writst BP monitor three weeks ago and check every day.  I'm not due to have a telephone consultation with the stroke specialist until the end of May.  Hopefully by that time the medication will have worked its wonders and my BP will be near normal.

As you suggest, I will try smiling a lot.  

Take care everyone.

Best wishes, 
Brenda

 

 

Unless you have suffered a stroke, you cant know what its like. Thats why the forum can be helpful. We know what you are going through. Every stroke is different . But so many issues are shared.

most of us are clots. Bleeds are less common. 
right side of the brain is more commonly in control of your left side. 
 

the medication etc will reduce the chances of further strokes. We are far less likely to have a stroke than the rest of our age group.

i do hope you sleep well. I took months to get my sleep right, retiring at the same time then going through the night.

you may then need to snooze during the day. Rest is essential. Your brain is working out how to work around the damaged areas and wants you to close down whilst its busy.

i took the decision not to fight the tiredness. It worked for me.

We have to accept that we are unlikely to recover to how we were. But we do recover to a new normal.

keep smiling

we are here for you

colin

Hi Brenda, Stroke is a very frightening experience. I can remember that when my stroke arrived I fell to the floor and wondered what on earth was going on. I managed to attract someone's attention to get my partner, but I don't remember going to hospital on blues and twos or going from there to another hospital. However, my story is not the message I want to get across.

What surprised me about my experience was on how quickly I became institutionalised. Hospital became my comfort zone and everything else seemed scary. When I first came home I was frightened to go outside, but I knew I had to. My first step was just to stand outside. The next step was to get as far as a seat and, later, to get to our summerhouse and go inside. I also set myself the task of walking in our Avenue, first to the next house then back, second day to the second house and back and so on. I was on a frame then, but graduated to a walking stick. I use this outdoors but not indoors.

Likewise, my first trip to a supermarket terrified me, but my partner was with me to encourage me. To be honest, I have to be taken shopping and I can't carry a basket. My partner pushes the trolley and I restrict myself to putting smaller items in it. My left arm and hand are useable, but not what they were.

I think what I am saying is plan what you need to do and don't try to do everything at once. I go away on breaks now and can cook, bake, change a bed and do some limited housework. I had to accept help, but remain fearsomely independent. Last year, I had a second mild stroke (something I dreaded). Fortunately, I was only away two nights, but am having to move forward again. Life has to be lived despite my partial disability.

I hope you will be able to get the help and support you need. Improvement after stroke is painfully slow, but try to think positively and move forward. I wish you all the best.

You are not on your own I have been feeling unbalanced for a long time  I make myself walk as I know it does alot of good but dread the feeling that I might fall down. I use a walking stick but have wandered about using a walking frame. My problem is my head the stroke affected my head and eyyes I have got double vision. I wonder if it will ever go away I had my stroke 3 years ago. Still keep going thats all we can do. Norma Jean.

I understand what its like to feel the pull to fall down. And the dreaded , never ending SF.

when i started yoga, the yogi got us to ensure that we were "grounded". My fellow students had some pull to the right and some to the left, but most were centered. The pull for them was a matter of inches. But i explained my pull was yards and yards away. Outside the hall.

the yogi got me to try magnets to rebalance, which didnt work for me. There were so many good things to learn that i rather dropped the magnetic pull.

i use a walking stick, often just held, waiting in case of emergency. When i am tired yes, i begin to tumble.The stick saves me.

i have also noticed a tendency to fall forward. I think this is a mixture of tiredness plus so many muscles are now weak from under use. 
 

i was told that two years after stroke the muscles might not recover so easily. This does make sense. I did loads of gardenning. So no strength left for regular walks.

now i am trying to go for a walk most days. The ice and snow has somewhat delayed the walks, but overall, i am walking more and more. I hadnt noticed how bad my walking had become. But i have now built up bit by bit and can do a mile and a bit.

trouble is, that these daily walks mean no energy for much else.

good sleep is crucial. Last night, for no particular reason, i only had six hours sleep. Today i am all over the place. So i am painting the shed, lots of this is kneeling, so i can do it.

so can you stand without shoes,  holding on to a chair or table, close your eyes and feel the earths magnetic pull ? Is it pulling you downwards or is it to the left ?

Maybe the nerve endings were burnt by the stroke. 
just the activity of checking this out, might get your brain to reconnect a bit better.

I repeatedly remind my brain that its just the messaging system that is damaged so please will it compensate and work.

colin

 

Hello BrendaAnn,

It's early days of recovery for you, I had my stroke September 2020 and I am still very much taking one day at a time. Try not to pressure yourself and trust your intuition. Things will improve albeit in their own time as you focus on rehabilitation. At first I was fearful of walking alone, especially without my phone, but because I know what a TIA and a stroke feels like, I also know how to recognise what I should respond to if it were to happen again. For me, gradually the fear of another stroke has pretty much subsided although it does at times cross my mind, I more so worry about other complications arising from the stroke but that's another story. A few weeks after my stroke I couldn't face having a bath alone, nor a shower with the door shut. I got nervous if my partner went out. Now, it is not so bad. Listen to your body and your brain, you will start to recognise the symptoms associated with recovery and the patterns, if there are any acute changes then consult a GP or visit A&E if severe. Most of all, not only seek rest and keep hydrated but also discover distractions that will help you through the off patches. Medieval music works for me, it may be as simple as that. 

Hi 

Thank you for your reply a lot of good things to consider. 

Thank you for taking the time to reply. 

Stay safe and well

Regards 

Jenny

 

 

Thank you for your reply, its not a good feeling, I feel disappointed in myself as I seem to have gone backwards as I was doing so well.

I did not think I could relapse 2 half after my stroke.

Thank you again stay safe.

Regards

Jenny

 

Hi 

Thank you for your reply, yes I'm back walking with my stick a bit disappointed but hey it will keep me from falling.

Stay safe thanks again for your reply.

Regards

Jenny

Thank you all for your replys and helpful advice.

Hi Jenny, don't despair ?, stroke recovery is definitely like trying to nail jelly to a wall.  There isn't a "road map" ?, I've lost count of the number of times my husband has become despondent about his lack of progress and the sinking feeling of going backwards.  I've kept a diary of his progress and achievements over 3 and a half years, so we can reflect and see how far he has come.  He's never going to be the same person he was, and his abilities will always be somewhat compromised, but he can do SO MUCH, and I'm thankful every day for this.  It's been a rocky road, and I don't mean the yummy cake version ??.  

Give yourself time, rest and relax, your brain never stops working, it wants to be re-wired and to re-file all of your memories and skills. Sometimes there's lots going on in the background, hidden behind the scenes, so be reassured that you will feel better and stronger in the future.  

Very best wishes, keep strong, ??

Ooops, I forgot to say ... after walking around like a Thunderbird puppet for months after his stroke, my husband can now manage long walks.  Over Christmas and during the very heavy snow we've walked walked miles, about 3-4 miles a day, I could never have believed he would be able to do that. (He's just got a puppy so that he can return to his favourite dog-walking hobby !!!)

I'm sure you will get through this tricky time and be able to enjoy your walking again.

Take good care, Nic xx