Perspective of a Newbie

Now nearly a year on from having a hemorrhagic stroke (and 6 months on here) and I'm getting some perspective on my life and the stroke that put me here.

Difficult to comprehend, but I was in intensive care for 3 days. I've not much recollection of the first week. Couldn't talk, let alone hold a pencil. The next week was a maelstrom of activity, improving all the time. I couldn't walk or use my right hand yet, but I was out of the stroke unit after just over 2 weeks. The third week in hospital was in a short stay ward for day-case operations where I got very little care as a stroke victim.

All that changed when I got home, stroke specific care all over the place, about 4 months of that. Was great, I had a physiotherapist, a speech therapist an occupational therapist for 4 or 5 weeks, they were brilliant. Plus ongoing care from the Notts START team 3 times a day, without whom it would all have been impossible, utterly impossible! I had them for 4 months, gradually becoming more and more independent.

Then a care agency, at which time I moved out of my living room as my only room to live in and started using upstairs more & more, eventually showering & sleeping up there again.

Then, because I had fallen though the cracks of the hospital side of things, I had a (I can't remember the technical term for it) a sort of false relapse, but at least I am back on their radar as a consequence.

As...

Since then, I've...

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It really is a slow slog.

I couldn't talk at all but I knew what was going on. Scary and frustrating. Felt that I was locked in. Plus the trauma and shock.

Was very ungrounded and floating away. Strange.

There was no physio and a few weeks worth of psychology support and speech therapy. Quite poor really. Most of regaining speech was from an online speech therapy programme.

I've had a couple of episodes which scared me. Yet when you find out what's going on, it's gives you some power. Possibly a bit of control.

Though I have to say that the hospital food was ok. Even if it was a bit groundhog day 😃

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yeah, the hospital food lol

I am lucky enough to be in one of the places that's best catered for with regards strokes, though I didn't know it at the time. It took me some time to work it out though.

I know what you mean about being ungrounded and floating away, I was locked in too.

I continue to keep forgetting what I'm saying/writing, very frustrating.

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Ooh where is it?

Sometimes I rehearse what I say. You have to think instead of being fluid. It can be tiring.

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Nottingham. I think part of London & somewhere round Crewe or similar are linked with Notts to prototype a new way of dealing with sufferers. About 18 months old, the plan is to roll this method of "joined up thinking" out to the entire country. Next door in Lincolnshire, there's nothing, literally nothing by way of dedicated specialist treatment. Literally a post code Lottery.

Bring it on.

I bet it is tiring. Actually, I know it's tiring. We do what we've got to.

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I agree. The stroke specialists have been left without a proper diagnosis. It's not good to have so much anxiety. When I was in the hospital, a woman who looked in her 40s, had another stroke. I noticed that the patients were saying they have the same kind of drugs. Even if, they couldn't tolerate those drugs. Just take your meds! Plus the pain you're left in. It really is a Cinderella service 😕

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I'm sure one of the problems stroke specialists have is that no two strokes are the same. They may outwardly present similarly, but the effects of each one is vastly different.

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True but it's nice if they can try. Problem is, more of younger people having strokes. It has to change.

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Again, I think it's awareness that these things happen that's made the difference rather than more people having strokes.

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It "helped" by me already being long-term disabled and having carers in place, one of whom was here when I had the stroke.

I'm single and don't have much by way of support outside of 2 or 3 people. Quite isolated really.

Jane, the mother of my daughter and with whom I get on with pretty well, works for our local Council, so I had some help through all the red tape involved. She worked wonders really.

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Spider555

You too are a pure inspirational person - you are right here for everyone and a fantastic friend to us all x I too have had a stroke - well 5 mini strokes and actually have an active Cavernoma on my brain which bleeds occasionally ( nothing can stop it happening ) but d'ya know what - I say WTF n just battle on because I grew stronger mentally knowing that because of my mum n dad dying young ( both 40yrs old ) and my sisters both having massive strokes at that same age - I have had the outlook of not letting the b'tard grind me down . I have been called a walking Timebomb by doctors- cos I battle against Barrets Oesophagus too and anxiety and depression but deal with it n try help others in my life - n if I can do that then I can win the war . I wish you every happiness x take care.

Elle 🌹

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Can they use a coil into your brain?

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Don't know Xx I know that they can operate n remove the Cavernoma but cos of strokes- it's a very risky dangerous move to make . Technically it's a brain haemorrhage in its own right but touch wood that parts only losing about a tablespoon of blood at a time then stopping .

But Thankyou for the idea xx Spider

Elle 🌹x

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Wow Tonytoo

You are an inspiration to us all for the war against a stroke that you fought bravely against and put everything into to get your life back again on the up 👍👌✌🏻fantastic Tony keep up the fight - I don't even know you yet I am so bloody proud of you 😊

All the best

Elle 🌹

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Thank you Elle. I must say that my experience pales into nothing compared to yours, I'm finding it difficult to put into words. Power to you!

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TonyToo

You don't need any more words to say because what you said already - speaks volumes 🌹and I thank you from the bottom of my heart for your wonderful reply xx You are a pillar of strength and a true warrior and should be proud of your winning fight against everything you have faced and conquered - Power to you too dear TonyToo x

All the best dear friend x

Elle 🌹xx

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Sounds just like mine but not receiving any help after having occupational help learning to walk for a number of weeks amongst helping you with the other effects a stroke brings and they stop at a certain stage you feel a little deserted and not sure which way to turn. I decided with the help of my husband and friends to try and do simple tasks and not give up and sit there. So far i have gone back to knitting go to a craft club and colouring club. All the people there help me with my projects. My husband has taken me to the baths to try and swim(which i look funny with discs on my arms and a tube round me) but i am determined not to give in. So i say to any one who reads this although i get feeling down sometimes with relatives and friends around i soon count my blessings as other people are worse than me. Sorry if i have gone on a bit

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Yes, it does feel like one has been "left in the lurch" doesn't it? Yet I see perfectly why they did this, in my case it was (after 5 months) all they could do for me. The way they do things have changed too, meaning that people who had strokes a long time ago won't really get any of it, people who have strokes now or recently will be covered by the new regime but those of us who had strokes a year or two ago will be aware of changes coming but be excluded or (as happened to me) fall through the cracks in the system, only to be picked up again if something happens to them.

Brenda, there will always be people worse off than us, always. Get yourself well, only then can you truly help others.

You too are an inspiration, keep on doing it.

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Thanks for the words of encouragement, All of the stroke people just have to keep going but at least we can send messages to other stroke people

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I was left with no physio. It did make me smirk a bit, with treadmills at the Stroke Unit 😮

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It leaves me with my jaw on the floor! How long ago was your stroke? What were the physios doing?

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2 years. I've still got a problem with my shoulder. I had a couple of tests like research. But no proper physio. When I read Stroke Association, it says that 76% of people were left with no help.

I couldn't eat properly after my stroke. So I'd had soft food. But the physio (!) told me to eat toast and I was starting to choke...

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I can only imagine that stroke sufferers have been "overlooked" by the mainstream (i.e. general medicine) until very recently and "old" sufferers have got to scream and shout and jump about (lol) to get anything, because that help is coming - if it's not already here.

Scream And Shout And Jump About!

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You can't always do that because you're in this maelstrom. That's why the Stroke services should help us 😕

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Well yes, but we've got to help ourselves first and foremost. I'm trying to imagine how much help - no, I don't have to imagine it, I know - I get from OH, Physio etc. if I ask.

Ask.

Help yourself.

Be strong.

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I've tried for two years.

My GP has been pretty much rubbish. Tried to change another GP but they wouldn't get involved. Too complicated.

When you've got chronic pain, no one cares. Trust me I've tried and tried again. They don't listen...

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I don't know how to answer that yet.

For someone who's actively asking for help and you're not getting any it just beggars belief.

I wish I knew what else to say, I really do.

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Unfortunately, it's started from with my stroke at the hospital. I talked to a paramedic and a porter about strokes. They actually said that strokes are low important. I'd be better off with a heart attack.

Because of my young ish age, it was so shocking. Did the right things. Never smoked, low cholesterol, not much alcohol etc. I wanted to find out why I've had a stroke. Again, it's don't ask or I can't find out.

Other patients were having problems. Saying they didn't want or more couldn't tolerate the drugs, especially statins. The neurologist kept saying take your meds. Put the dosage up. It's as if they didn't know what they were doing. Of course for me, they didn't diagnose me. They missed my problem. There's a window for the best drugs at up to 6 to 12 months, to heal the artery.

I probably am quite bitter about it. I've found the inception and after care is abysmal.

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So what do YOU want from all of this now? :)

Forget what's happened in the past, focus on now.

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Good question.

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I'll tell you what I want, normality.

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I've had intervention anyway 🙂

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:)

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How are you doing?

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I feel isolated. I AM isolated. No man is an island, but I'm making a good go of it lol

I don't know where to go or how to get there. Very frustrating.

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Are there any stroke association or headway groups?

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That's a good idea :) I've been looking at sites for information but not for company or people to know. I don't think I've been very good or proactive in this area. Not for a long time.

Time to make new friends and reacquaint myself with old ones.

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Where are you located TonyToo?

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I'm in Nottingham, UK.

The biggest problem I have isn't really anything to do with having had a stroke which is only a year old, it's an older problem. I could take it back four years ago to when I "lost it" after my best mate committed suicide and my health deteriorated drastically. I could take it back a further six years to my last romance and associated relationship. To eighteen years ago when I had to stop working due to back problems that started when I was twentyfive and I crush fractured three vertebrae in a drinking accident. I could be the boy I was when sexually abused at the age of fourteen.

They are all the "ME" that grew up to be now. Yet I know that ME and I doubt there's anything much can be gained from talking about me some more.

That said, I have had a stroke, I am asking for help and I don't really know how to go about getting that help or what that help is.

It's a mess lol. I just shake my head and smile at the vagaries of the universe.

:)

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I know what you mean. It would be nice to have a break. All you can do though is move forward x

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I understand, it is difficult but not impossible, just time consuming. I’m selfish with my time because I get exhausted so easily.

So I think if I take the energy to involve myself, I set my expectations too high and then am disappointed.

Why can’t a genie come along, wave a wand and just “make it happen?

Wouldn’t that be great!

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Things take as long as they take as far as I know. Patience is to be lauded :-) as well as wisdom x

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What puzzles me more than anything (I'm infuriated, agog, completely weirded out amongst others) is that a lot of stroke sufferers don't engage with the world as stroke sufferers. It's like it's a secondary symptom or something.

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Embarrassment.

Shock.

Denial.

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Yep... all of those too.

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I want a shirt that says something smart-assed... something familiar to.. not all disabled are in a wheelchair. I don’t like when people look at me like. Somethings not quite right but what? My brains been injured and it doesn’t work as rapidly as I would like.

Any suggestions for comments? Have some fun with it. What can you come up with?

My brains taking a power break!.....

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Hi cjt. I use the toilet in Morrisons because it says "not all disabilities are visible"

I forget I look 80 and behave like a 20 year old most of the time. Which wears me out to chronic levels.

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It doesn't matter what anybody else thinks :)

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