Myasema Gravis crisis

[Tippex]

my husband spent a month in hospital of which a week was in ICU.

he has been told that his full recovery may take 18 months. 6 months in and he feels tired, weak and frustrated.

I give support and encouragement but feel helpless at times.

Support from friends neighbours and family is there but people really don’t understand what it is like to live with long term illness

I worry how he would cope if I became ill and try to make sure that I keep healthy

Any advise would be appreciated.

[Sepsur]

Best advice - if you are worried about getting ill yourself because of your partner ability to cope at present, remember to look after yourself to reduce the chance of crashing ). Sleep well, eat well and do some exercise and things you enjoy - so that you are as well as you possibly can be.

[Lux95]

My advice for your husband is to be patient and try not to get frustrated. It does take time. There is no way around being tired and needing more rest. We just have to rest more now (that lessens over time as well). Some things never fully return to normal, but that varies from person to person.

I know you are concerned about something happening to you, so also take care of yourself. This is when family and friends need to be made aware of the challenges we face after the ICU. You are exactly right, no one really understands, and no one is at fault for that. They haven't been through it, and probably think that when we walk out of the ICU, our little vacation is over and everything is back to normal. It isn't. We may need them even though we can't expect anything.

For many of us, life will never be quite the same. Sure, we eventually get back to walking, making dinner, mowing the lawn, running errands, working as much as stamina allows (that varies too). But other things will change and he will face new challenges, though hopefully, nothing too significant. Families and friends can and hopefully will be a great help, especially if your health is at risk. Take care of yourself, and post as often as needed. If you can, find other ICU survivors and families to talk with in person. That can be very helpful too.

[FamilyHistorian]

I can make 2 suggestions. Firstly it is important for you to know you are not alone. Critical Care Support Network run a drop in on zoom every Tuesday night at 8 for family and friends.

You will see on their website that that there is also a wide range of support for your husband including a drop in and exercise classes. It does take time to recover for both of you

[BigH63]

Hi

Yes unfortunately this is a long road to recovery. Most of us are still recovering after years, This is a marathon generally not a race! Baby steps all the way. I’m still on the recovery road 18 months in, I still can’t walk far and get so far down the road only to be pulled back again, I still get tired, and I sleep accordingly you have to. Look after yourself, I’m sure he would cope if you got ill but it would be according to he’s cognitive ability as much as anything.

Good luck.