Advice... Will it ever come back?: I'm really... - ICUsteps

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Advice... Will it ever come back?

Lotus-Blossom profile image
Lotus-Blossom

I'm really worried. Since my I.C.U experience (Close to death) I'm still very weak which really concerns me. I'm only 36 so of course I'm worried because what concerns me is if I don't get it back before I turn 40. Will it ever come back?

I'm really considering speaking to my doctor.

6 Replies

Hi. Lotus.I was a year or two older than yourself, it took me months before I could even walk again.

I was in intensive care in a coma for 28 days on mechanical ventilation and life support, and don't think I was anything like back to my old self physically for six to eight months.

Mentally ill carry the horrendous hallucinations and delusions for ever, they are as powerful and vivid today as they were in the ICU over ten years ago.

My GP was next to useless, but this was before anyone really talked about or understood ICU psychosis.

It takes time, how long has it been for you?

Peace,

Glen

Hi Lotus, as Glen has said it can take time to recover. I had a month in ICU last year, on vent, out of it completely. All covid related! When I first woke I was really confused and couldn’t understand what had happened. I was extremely weak and couldn’t event sit in the bed or hold my head up. It took me over a week to be able to “walk” with zimmer and physio help. They sent me home and I spent the next 6 months building up my strength. 1 year on I’m in a much better place.

You will get there. Focus on the short term gains and don’t over do it or you’ll get a set back which is more frustrating. Even if you’re feeling great just pace yourself. And definitely speak to the GP - you may benefit from physio support to get you going - that’s what I had and it made a massive difference to my recovery. Lastly I found keeping a diary / log of my exercise really helped - its the tiny improvements that lead to the big changes. Good luck! Lee

There are numerous factors that influence each of our recoveries.

Some people have neuropathy that never fully repairs & the weakness remains. Neuropathy is nerve damage and can repair at 1mm a day. 5yrs later, I still have weakness in the hands &fingers which is more noticeable in the cold & wet.

Muscle waste & myopathy also leads to weakness - the only way I ave combatted this is through regular targeted exercise.

A person can lose 40% of their lean muscle in the first 10 days of being ventilated. This is catastrophic lose and takes a helluva lot of effort to repair & get back to normal. I would speak to your Gp - different areas around the U.K. offer very different services. We also run numerous free movement, strength building sessions on line which you are welcome to join.

Hi. The good news is it will come back! So I’ve been out of ICU for 14 months. My recovery and building of muscle has been way slower than I ever anticipated, made additionally difficult by long periods of fatigue.

The best thing I did was join the ICU STEPS Chester Exercise classes. Whatever you do, you need to choose appropriate exercise. It’s a slow build but I’m convinced that working at this for the last year using their classes has left me in a better position than I would’ve been otherwise. Whatever you choose to do it must be gradual and not too excessive. Try and get some good advice, not sure it’s gonna come from the doctor though! I’d recommend you look at the ICU STEPS Chester website.

best wishes Pete

Every one of us that has been through a similar experience has also been through the same fears. I am a lot older than you and spent longer in ICU. I am six months on and apart from a different problem the Post ICU aspect has definitely improved. The way I was advised to look at it is like this.

1 Do everything you can to help yourself in the way of diet, exercise, physio, and socialising..

2At the beginning if you are tired and need to sleep go to bed. Don’t worry if this means you keep odd hours for a few weeks . Don’t worry if you go to bed and can’t sleep either.

3Dont think about what you can’t do that you used to be able to do. Think about how bad you were when you first came round and how far you have come since then. Then as time goes on you can think about what you can do NOW that you couldn’t do a month ago.

4 It is OK and normal to have periods of being totally pissed off with things but it is not OK to stay there. I died and had to be brought round. When I get really down I just consider the alternative.

5 I don’t know why you ended up there.My stay was down to a heart operation that went wrong. Well a blood clot in the heart a few hours after the op. But the original operation was elective I had a complaint that was totally without symptoms that was getting steadily worse but I still could have died with rather than from.But if my aneurysm had burst and I wasn’t within minutes of a hospital Imwould have died on the h rehabspot.But I had the choice, and that makes it hard sometimes not to regret having it done. But there is no point in looking back or thinking what would have happened if I hadn’t. We are where we are now and have to live life as it is NOW.

6 No one can promise anyone anything with recovery from this sort of thing but if you are compliant and go along with physio and diet I would be amazed if in 6 months you look back and see how far you have come. How far you go is probably down to you.

You are bound to be weak after ICU experience. I lost alot of weight and did not have the energy to do much, even moving in the bed was a problem. I was in ICU for about 14 weeks, and it was only after being transfered to a community hospital for physiotherapy that I began to improve my fitness and mobility. I have been out of hospital for about 6 months now and still suffer fatigue, but I think this is more covid related than being in ICU. I still use a stick when walking outside.

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