A Newby...My story so far

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Hi to everyone is on this site.

Excuse my basic use of English please. A bit about myself and a mini timeline before my event(s). I’m 60 years old and an ex sporty type person. But if I’m honest I was also an ex heavy social drinker.

Following a really bad chest infection I’ve been in AF (on Apixaban) for about 6 years now. In just over a year, in 18 months I’ve gone from an Abscess in my chest (major op) to a Prostate bleeding issue. The scan showed a majorly destroyed kidney with clots. Venal and arterial investigations on my kidneys showed other problems. My vein in my right thigh was “insufficient”. An important Sub plot – I’ve had Leg probs ie compartment syndrome forever but in the last year it’s got worse and worse. I’ve gone from been able to walk briskly (albeit in pain) for 5 miles or riding my stationary bike for 10 miles a day to struggling to walk at all. I just knew there was a deeper problem going on. My lower legs were pumped solid 24/7. So, I had the first TIA in Oct. mainly my balance was affected, and my left side was pins and needly same as It felt I had been slapped in the mouth. I felt ok so I did go back to work after 3 days.8 weeks later I had a full stroke. I could Barely speak at all, mouth dropped. As you all know it’s terrifying.

Anyway, here I am. I struggle to sleep for more than 3 hours a night, just Listening to my new friend Tinnitus (Aspirin doesn’t help apparently) for company in my brain thinking yes, you’re going be ok, just another hurdle you’ve got to get over. The next second I’m thinking that’s it mate. Game over. Some very negative dark thoughts most of the time, then I join this excellent group read the posts and I’m totally humbled by it. I know my problems are practically nil compared with others.

So now my Left upper arm still pulses/twitches on its own, pins n needles in my left hand much the same as it did on the day of the TIA. My consultant has told me its post stroke activity. Fine, I accept that. I have on and stroke fatigue. Where 1 minute I think that I’m thinking clearly then the next I just I’m not on this planet. Trying to deal with my Aphasia, I try to sing or read out loudly and do the many exercises I’ve found out about (Dr Google on Youtube has been good). My face still feels like it’s been slapped and probably looks like it too. I try to keep a sense of humour about things, but I can’t help thinking for 2 thirds of my life I’ve been drunk and for the final third of it I just sound drunk. Great.

Exercise – trained really hard 12 hours before both events. Coincidence? Even yesterday I did a few sets of sit-ups and later I thought that I was going into stroke scenario again. The docs told me it would be good to exercise moderately as advice I have read on here it says to. Surely, I can’t be doing myself more harm can I? A nice subplot is that since my night in hospital and the 300mg of aspirin my legs don’t feel anywhere near as painful. Do the clots actually sort of “flush” away?

Before I had the TIA a consultant told me the kidney clots were probably caused by a reaction to the vaccine, then following the stroke another consultant told me, it was most likely caused by the AF and that I’ve been “unlucky”.

Any Advice on taking Energy drinks/supplements? Should I resist? I had an energy pill yesterday and was buzzing, but once the sugar high wore off I felt terrible. I haven’t taken anything since and I was hoping someone could share their experiences / advice with me.

Sleep, tried everything herbal and legal. I can’t see my docs giving me anything, but I will be asking. I do not want to go back to world of alcohol induced sleep.

I need a dentist (long story), I’m thinking that with my mouth full of lead and my aching jaw as regards my speech recovery. I just know that the whole issue of dentistry following a stroke whilst in AF is going to be another whole saga. Again, anyone had an experience that they wish to share?

If this is my life now I will have to get on with it. My very fit 80-year mother nursed my father after 3 strokes and 3 heart attacks. I’m not putting her or my good lady wife through that as she’s just lost her mother and her family have imploded and basically, it’s all Fubar. I’m learning as I go along as already, I know that I have some good and some very bad days. But to think I’m possibly jobless and then homeless soon is terrifying. Anway, that’s currently me. Thankyou for taking time to read this and I wish everybody who is on their own journey or part of someone elses the best luck anyone could possibly have.

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Hi @Spike7886

A lot of us find some comfort in acceptance of the idea that we have to adjust to a situation where Life now is snafu - You have to concentrate on that n - it’s a new normal .

It’s possible that the aspirin which acts as a blood thinner is helping your legs - don’t forget the caveat that none of us are medically trained (But I think our ignorance is often more than compensated by the lived experience and shared discussions that we have). Are you also on something like warfarin or clopidogrel? One is a blood thinner and the other antiplatelet so both could be helping .

Dentistry will only be affected by things like warfarin not by clopid - and I believe the standard is to simply stop for two or three days before - be your dentist will be up to speed.

Your references to doing stuff like sit-ups and then feeling pooped afterwards are pretty common. That suggest that you’re still doing more than you are capable of. Your autonomic energy allocation will be towards healing your head. That doesn’t mean restoring capability but it does me coping with dead tissue in your brain and needs to be removed by bodily processes. the extra energy that is required to do it and any thinking now means you’ve a smaller battery that runs out faster a double whammy - look up spoon theory

A quick search of the forum shows there is nothing being discussed here about either energy drinks or Red bull in particular. Generally speaking caffeine could say no you shouldn’t yes you can arguement but indecisive. The now you can’t is it raises blood pressure The yes you can is it helps with fatigue. The yes you can does emphasise “in moderation”

Fears about (everything! are normal) being unemployed etc are real and that is why things like PIP are provided - see the community wiki post Extra help and concessions - and speak to citizens advice who are mentioned as a start of that wiki-post for help with application 99% of us need the help because of form is so tricky.

You might have mentioned other things I forgotten so keep reading and using the magnifying glass to search

Caio Simon

PS the majority of us find it gets easier with time but the time is measured in quarters and years not weeks

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Hello Spike, @Spike7886

I’ll be 60 later this year. I suffered a major stroke 15 months ago (26/42 on the US stroke severity scale), and I have a reasonably rough time now. Herbal and legal is good but I also take CBD oil every night. It’s meant to be good for stimulating new synaptic pathways. Tinnitus a problem for me too, but it’s lessened since my stroke… high blood pressure can make it worse, but I’m lucky the meds keep mine low (ish) now.

Just to let you know, I also have spells when I think “Game over” especially last night, which had me screaming and shouting and crying for an hour. I said to my wife that all I wanted was to die and why didn’t God just finish me off? I don’t think a person can be / should be pushed so far.

I also love to exercise, but I have to be sensible, and do it in moderation and always get the balance right; not too much not too little; either leads to trouble. Research your nutrition, and definitely resist the energy drinks; I carry a little bottle of a ginger-shot around for a boost.
Jobless/ homeless/ friendless are common problems, so you’ll find advice about those topics.

That we’re fubar is true, and I’m lucky enough to have God on my side, and a fabulous wife, and still I’m in trouble; at the moment it’s my eye that is unsettled… nobody knows why, but it’s definitely since my stroke. Anyway, whatever your ailments, problems and toils I wish you good luck, and much courage to face it all,

ciao, Roland

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@Spike7886 thanks for sharing your story. A lot of what you mention is quite common. But that doesn’t make it easier to deal with.

Tinnitus is also my new best friend although i find i can sleep ok with it because the fatigue wipes me out. I had years of no sleep.pre stroke though so you have my sympathy. It’s definitely worth asking your GP if they can prescribe you something short term as it may just get your body back into a sleep pattern.

I know nothing about energy drinks but I woild try ,& avoid them as they will probably affect your sleep too.

As Simon says the aspirin could have helped with your legs as it thins the blood.

Exercise in moderation should be ok but you need to know your limits. My advice is to build it up slowly. If it makes you feel like you might be making things worse then you are probably doing too much right now. Slow and steady wins the race.

Wishing you lots of luck as you move through your recovery journey.

Ann

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Hi @Spike7886 and welcome :slightly_smiling_face: Aside from all the good advice above, have you consider finding any local stroke support groups that might be going on in your own area?

I found the Aphasia group I attend once a month is great for helping with mine. I think it’s more to do with being able to relax and has helped me overcome that feeling of self consciousness about my speech. That has helped me enormously, I’ve even attended a few of @SimonInEdinburgh’s zoom calls, I’ve just got to venture into one of @Bobbi’s next :blush:

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Dear Roland,

I am back from the long holidays (was on a long cruise).

It pains me to know that you suffered so much the other night. I know you struggle like hell. I remember my dear mother, and all of her mental struggles. So painful.

I just keep praying and doing qigong, wishing the sun will come out for you and others on here.

We humans suffer so much at times. It’s hard to understand. I could cry right along with you at times.

Haola, haola, haola - All is well, getting better! Please believe, despite all!!!

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Thx Matthew @Matthew1798 ,

Happy new year to you and hope you had a great cruise. Yes, last night, I had 2 hours of trying to meditate to get to sleep, then I snapped and had a solid hour of crying, begging, screaming and according my wife, wailing. All because my eyelid / eye was hurting. What scares me is that 2 independent ophthalmologists cannot find the reason, and I’ve no explanation, really. The irony is that I have 20/20 vision.

Well, my Chinese doctor came this evening and said I was still much better than this time last year, when I could only sleep one hour each night… all because my muscle tone was non existent, as my muscles were withering away day by day. Well, this year it’s my eye bothering me, so he treats a nerve above the eye, I think it’s a blocked bladder meridian, triggered by fear (according to Chinese medicine). Possibly I’m anxious about the cold weather and all that’s expected of me in 2024.

Anyway, I’ve never heard of anyone with this condition. My other oddity, the every-other-day locked-glute, also makes me feel a bit lonely, and a bit of an odd case. My Chinese doctor says it makes me special, but I’d much rather be average “Joe Blogs”. Well, it’s my own personal battle that I’m waging here.

I have little or no clue on how to get out of this mess, but I think all who have suffered a stroke are entitled to feel there’s no way out. We wake up every day, after dreaming of running about we’re suddenly thrust back into reality, to survive in our broken bodies, and to live in hope we will reach a better, more settled, quality of living one day. We long to break out of this prison we find ourselves in. It’s a condition of the mind as much as the body.

Wishing all safe passage through the Winter,
ciao, Roland

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Yes, dear Roland, it’s fine to cry. You’ve been through hell these past 15 months or so. It’s okay. You feel what you feel - you have no control over it.

I don’t expect anything from you in 2024. Drop the expectations. Mingtong Gu says leave them “at the door.” We get better by them letting go. You’re holding on too strongly to hope, dear friend. It’s putting strain on your body and mind. You’re trying too hard. While you don’t give up, you are putting all of these burdens on yourself. They’re causing unnecessary suffering.

I always thought my dear mother was locked in a prison cell after her stroke. I tried to free her, but I couldn’t. But she’s gone, and you are NOT. There is always hope that things will get better for and others on here.

What worries you so much about the winter, the cold, etc.? It triggers tightness in your muscles? Makes you feel sad? It’s okay.

You are full of so much emotion right now. It’s hard. I get this way when I am deep in grief. I get angry; I lash out; I feel alone. But I come out of it somehow. You come out of these emotions, too. They come and go, like the ebb and flow of the ocean.

No guilt; no expectations, etc. Just go on…the sun will come out somehow. Don’t put these burdens on yourself. Let go!! I am just telling you what the qigong masters say.

You are entitled to feel as you feel. As I said, you’ve been through a hellish experience. You have no apologies to make, nor justifications. You’re hurting now and you’re struggling.

I give you my love and support, and my qigong prayers.

Thinking of you all on here. I’m sorry for these dark places you find yourselves in at times. Somehow, try to think that “all is well, getting better” in a very soft and gentle way.

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Thanks for your message, Matthew,

This time last year I was very unwell, and I never liked the cold in January and February… so in my brain I just think I have to get to March, still cold, then Spring and the recycling of life once more. I must keep up my Qigong, now that I have gone back to painting (with my non-dominant hand) and have already done 10 paintings since starting up again. Tomorrow I start teaching, so need to pull my socks up. Anyway, I slept like a baby last night, just the usual painful eyelid in the morning. Now out for a walk.

cheers, ciao, Roland

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I am glad to hear that you slept well last night.

I love to paint, too, but I haven’t done it for a long time. I will start up again soon.

Keep up the faith. Know that your qigong practice is not in vain.

I’m wishing you a fantastic week ahead.

Bye for now!

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Hey Spike,
I’m 60 too. Had my birthday in hospital during my early recovery from a bleed to my front lobe - RHS in August 23. I was fit and well too. Try and concentrate on exercise at an easy pace and find some new interests. I’ve become a big HG Wells fan and joined the society. Also, I love VW classic beetles, so started looking at what it takes to electrify it.
Do you read?
Talk to your work and see what times you can work. If you go to your social services you should get some financial help. Try all avenues. This site gives lots of different advice and help. You’re not alone.

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