Light at the end of a very long tunnel

[Adidrive]

So it’s been a couple of months since I’ve posted, I guess that’s because I’m either working or visiting the rehab unit. However last time I posted I said that I saw Jess take a few steps with a frame and, last week she was walking without a frame and just the OT steadying her and I never thought I’d see anything like it again. According to the physio she is ahead of schedule.

I know that at 18 weeks today since her bleed we are still in very very very early days but I can’t help but worry about the cognitive side of things, especially the short term memory and current inability to learn new and different tasks. However much I devour other people’s stories of success after long, hard and ongoing battles I still find it hard to believe it will happen, even though I’m seeing the improvement most times that I visit.

Maybe this is just my own self pity rearing it’s ugly head but I’ve never had to cope with anything so hard, especially trying to look after her son with the help of his older sister and her elderly parents (don’t ask about his father, there’s no point).

I guess what I’m saying is I’m grateful to everyone that posts on here, and in other areas of social media as your experiences, good and bad, help enormously and I’m sure there is light at the end of a very long tunnel

[cat3]

Adi, your post would resonate with my son. When he first saw me walk unaided he was visibly taken aback and emotional ……..and grabbed his phone to video the moment.

It was months before I worked out what he and his sister had been through ; the initial shock of a SAH followed by daily visits (where I talked gobbledegook for weeks) all whilst working full time and caring for young families. But their relief when I returned home was a million dollar's worth !

So I get what a strain it is for loved ones and often think how much worse it is for them at times of critical illness. And the after-effects might well prove challenging for a while. I still can't walk as far as I'd like and have short term memory issues, and fatigue etc., but my life looks normal to most people and its quality is far beyond what I or anyone else expected in the early days.

If your partner is showing continuing improvements there's every reason to be optimistic. It's a slow process but hopefully there'll be much more progress to come over following months and years. Try to take respite when you can Adi ; it looks like you're doing great !

Best wishes to all of you at a pretty surreal and testing time. Cat x

[Froggiefrog]

Although the origins are different, I am struggling with short term memory issues, information processing and sequencing tasks after a VP shunt replacement op 2 months ago.

It seems perfectly understandable to me that you find it hard to dare to believe there will be on-going improvement. You want those who you love to be 'the best that they can be'...but whether the improvement either meets or doesn't meet your hopes, you will still love them just the same and they you too.

As someone who has had to rely on his partner far too much for my liking, I can assure you that, even if unspoken, your efforts will be hugely appreciated. If you find aspects of what you have to do difficult, that is not being selfish or self-pitying my book, it is being open and honest. By being open and honest in saying you struggle, you are simply stating the facts. I defy anyone to see that as weakness, quite the opposite, in fact.

My own personal battle with short term memory issues do see my feel guilty about the effect on my partner. This said, her patience and understanding are something very special to me and all I ask is that you remember you are doing something extraordinary and if sometimes the pressure of it gets to you, many, myself included would say ' Of course it will '...we are humans, not machines, after all.

Sending you strength for your efforts and thanks to you and those like you for the incredible things you do for us when we need it most.

[Adidrive in reply to Froggiefrog]

Froggiefrog, thank you, your honesty about your situation, and your honesty and understanding about mine puts everything into perspective, even if it’s only for a little while. Everything you say, I know, but of course it’s hard to keep that in my head and the negatives creep back in regularly but I will remind myself of your reply to me when they do

[philbou]

Thank you too adi

My wife is in the same situation as your partner

But she’s not took any steps yet

The very fact that you choose to post progress on here

It give other people hope in there situations

For me it seems a really long road too

And tbh I wasn’t coping very well myself

But it’s a question of never giving up hope

And also look after yourself

Too eat and sleep correctly

Your health is just as important as your partners