Hey @Sippie911 ,
I’m Merl, I’m a member of the modsupport Team here on Ben’s Friends. I don’t have an annie but over the years I’ve required a few neurosurgeries (including craniotomies) to deal with another little nasty growing in my head. I narrowly avoided my 7th neurosurgery, another craniotomy earlier last year.
My initial plan was operate, recuperate, then back to ‘life’ and for the first few surgeries that’s what happened. Each operation has hit me harder and HARDER, with the last couple wiping me out of commission (I can no longer continue in my career) and that’s been a VERY bitter pill to swallow. I know that ‘mad’ you speak of. I was angry at the world and everybody on it (especially myself, as if I had any control over it all). I think one of the hardest things, especially for a control freak like me, is admitting I had zero control over ANY of it. I had to hand all of that control over to the medicos.
I was my own worst enemy, I tried to force my recovery to happen ‘quicker’, to push my body’s limits. P.S. You can’t recover quicker than your body allows. I pushed too hard, too soon. Something went ‘POP’ and I woke up on the neurosurgeons table again. DON’T DO THAT!!!
Listen to your own body, it will tell you when you’ve reached your limit. Don’t push it. Now is a time to be kind to yourself. Slowly is a word I hate, but it’s something I’ve had to learn.
I think the old Boy Scout motto of ‘Be Prepared’ is a good one. Some people can go through surgery, come out the other side thinking “Well, I don’t know what all of the fuss was about…” with very little in the way of side effects or recovery issues. But then for others the outcome can be catastrophic and life changing. We ALL hope for the best, but prepare for the worst. And that’s what I did ‘prepared for the worst’.
I sorted my will out, had it all updated. Gave my wife medical power of attorney, ‘If I end up needing a machine to live… …turn it off’. Made sure all of my insurances were in order. This may all sound rather morbid, but I didn’t want my wife being left with debts and no roof over her head. My view was “What if…?”. What if I need fulltime in home care…? What if I’m bedbound? What if I need specialised mobility devices? What would that cost? Thankfully, I can still walk, talk and wipe my own backside, but I set about looking at post surgery services/supports BEFORE my surgeries.
Starting from zero, trying to initiate services, whilst you are trying to recover can be a nightmare. Investigate what services maybe available now, before you need them. Speak to the hospital. Many of them have a social work dept attached. They will know the sorts of services are provided both by the hospital and local community services. For example, I live rural, my local council has a medical taxi service to take people to and from hospital appointments. Try to utilize the services available to you.
Merl from the Modsupport Team