I left hospital ~(Sheffield Hallamshire) without any rehab. I arranged my own OT after meeting an OT (who is treasurer of my local Headway branch) at their monthly coffee morning. I plucked up the courage to go after "Googling" them in Feb/March of this year. She was fantastic. I still see her on a monthly basis - combined with Headway coffee mornings. If I hadn't gone to that coffee morning I don't know where I'd be.
I had to go back to work after my pay was halved and was losing money if I stayed at home. We could not claim any benefits as my husband earns over £170 a week. I'm still finding work a big struggle and am not yet back to my earlier role as it's too busy and noisy for me to cope. I've had to reduce my hours to try and cope with fatigue but it is still a big struggle as I don't sleep well. I'm seriously thinking of applying for early retirement through ill health but we've booked our first holiday together next year and we are paying it off bit by bit and I worry how we are going to manage if I do finish work. Sorry I'm rambling. Any thoughts people?
Written by
copes1
To view profiles and participate in discussions please or .
Rehab is not always available, they kept me an extra 10 days in hospital, while waiting for a rehab place as I still could not walk. I consider I was lucky to get the rehab place, there were some people in a dreadful condition, much worse than me.
It's not easy losing a wage, but that's life I'm afraid it's why we should never over stretch ourselves, you never know what's round the corner.
I'm so sorry to hear of your troubles!! Yes You had the same problem in 1998 following my B/I. I followed the same route as you have taken as again I was discharged home with no rehab in place. I have had to take early retirement due to ill health. This was around 2yrs ago now so any help & support you need I am here for you if required?
Thanks. It is appreciated. Will prob ask next week. It's the 1st anniversary on Tuesday so am a bit emotional. Hope to be better after that day is passed.
Hi. That is great, I will help you then. Is there anything than I can help/support you with now??
Steve
My husband has had to give up work, but does receive PIP which has helped, so I have gone back to work full time. While in many respects I enjoy my work, it does add to the overall pressure of being a carer for him while working so many hours.
Then there was the difficulty he had adjusting to the fact I was working while he was not, three years on we have got a balance though we have to be careful we are managing.
I got help fro my local Carers centre which I found through Carers Trust, I would think Headway also have people who can help you consider what benefits you may get if you give up work.
Hubby now volunteers once a fortnight in an environment that he can cope with and he gets a lot out of that as well as helping other people.
We too struggled financially when I got ill: my OH had been made redundant not long before and then suddenly my pay was decimated as one month off sick became two, then six, then twelve... Fortunately I have a small income protection policy which helps; also we decided quite early on to move house and downsize: I couldn't manage the size of the house, and we couldn't afford to heat it, let alone pay the mortgage. So we went from 5 beds down to 2. A bit of a culture shock but more manageable on all levels.
I didn't so much apply for il health as be told after almost 2 years that my contract was being terminated on health grounds and then have to wait for the assessment by my pension provider to see whether the pension would kick in, and at what level. As they deemed me unlikely to ever work again in a similar senior role, and indeed, probably unlikely to ever hold down any kind of regular employment because of the mix of physical, cognitive and fatigue difficulties, the pension did kick in, on a low level initially, then marginally increased after 2 years when it became clear that no, they were right and this wasn't going away. I have days when that assessment still rankles....equally I have weeks when I have to cope with the wonky walk and fatigue going overboard and think maybe they were right...
It is a hard process with nothing certain, you lurch from financial crisis to financial crisis and have to cut your cloth far tighter than at times seems respectable (raiding the change pot for dinner money was one memorable experience I don't want to revisit...) I spend an inordinate amount of time and energy juggling things so we get by, particularly as the contributions based ESA disappeared when the pension kicked in, which wasn't expected. My husband now juggles self-employment with caring for myself and the boys, now they are a bit older and don't need a stay at home dad that has eased things a bit.
But yes, it is tricky, there are sacrifices which have to be made, choices which are thrust upon you....holidays now are camping, or breaks on Tesco vouchers and disneyland Paris on Avios points...it is one of those luxuries where you don't get to choose the way you used to.
But, we manage. We get by. We live very frugally and scrimp and save so we can do the things we need to. In the end, that massive two-thirds reduction in our income has been managed and its impact contained. And we are still happy. Life is different from how it once was, no doubt about it, but life is good, nevertheless. So I suppose my message is that things have a way of panning out....
I'm also a by-product of the Hallamshire's curious discharge system. Last week was the six month anniversary of my haemorrhage. I'm back at work full-time, but I know I'm not the same as I was before, I used to have quite frankly terrifying recall, but someone asked me something yesterday, and I just didn't know the answer.
I was referred to a local rehab centre, but only took two appointments, as I was at entirely the wrong stage of adaptation to the changes to know what I wanted to work on. I also felt guilty, seeing the other people in the waiting room, and feeling that I was wasting the therapist's time, because my after-effects are quite negligible. I've asked work to refer me to OT, but the response was a bit dismissive, I've also emailed the local Patient Advice Liaison thing to ask for a referral to OT, but had no response.
I'm in a curious position, I look the same, albeit a bit skinnier, and outsiders wouldn't know, unless I told them, but I have a strange desire to have some kind of formal assessment of my functionality, so I have something 'official'. Looks like I will probably have to approach my GP for a referral, but the guilt is still holding me back. I know I'm not-OK, but I'm more-OK than I might have been.
I'm making about as much sense as I usually do, we muddle through, we find a way, I suppose?
That is just it Gaia, not-ok but more-ok than you might be....anyone who came to see me as a plod wonkily round our emerging smallholding would probably think ? Not much wrong with her...but it is precisely because these days I live a life writ small and slow, of necessity. Anything else and it all goes quickly very wonky indeed.
Still finding my feet, testing my boundaries safe-and-slow, and realising that I can't hurtle everywhere at 90mph like I did before. The anxiety is a kicker, and I struggle to calm myself sometimes, but I don't want that vague-dopey world of anti-depressants again. I had a grip, for a while, and I need to get it again, because otherwise the tick-tock anxiety will consume me. I'll try it my own way for a while longer, but, if it looks like I can't work around it, a trip to the doctor might be in order, and NOT poking him in the eye if he asks if I'm 'a bit weepy'.
Same here. Some days are better than others. I would have liked to have some sort of assessment too so that you can say yes I can do that or no I can't. Don't know about you but it varies from day to day. Anger is quite an issue for me - especially if things aren't going as I would like them to.
Yes, anger is an issue. It's a good job I own about four million pairs of boots, because I do a LOT of 'walking away', and 'leaving the room' now, I'm really, really intolerant of people, I was a bit before, but now, after such a major medical trauma, I just won't put up with idiots.
Bad day today, I think I'm coming down with one of the usual back-to-school viruses, it seems that when I'm ill now, everything's amplified, I used to just breeze through any illness, like Oscar the Grouch with his pants on the outside of his dustbin, but I'm all sort of 'weakened' now, which grates on my nerves.
I'm waiting now, for another letter from the hospital, to sort out surgery on the other operable aneurysm, and my mind likes to play what-if anxiety tricks on me. I'm LOADS better than I might have been, but I still get frustrated and irritable with the tiredness, the lagginess, and the general cloudy headache. I AM positive, and resiient, and I will build a way through this, I'm just still not out of the is-this-OK limbo.
Yes I was in the same situation in 1999, I was discharged home to nothing (Rehab) I had to wait a number off weeks in hospital for a bed in the local rehab hospital.
As I made a better/faster recovery they sent me home (Great) I also found my local Headway here in Birmingham more by luck than judgement.
I went there before my NHS Rehab !!!! They told me that I would normally have gone there after my NHS Rehab.
"Yes I'm Irish"
I ended up volunteering on both the unit & the monthly board meetings .
This was really good but a few years ago it all had too stop due to my Increasing Problems.
It was a real blow for me as I really enjoyed giving back something that I needed so desperately when I had my B\I in 1998.
Never mind hopefully I can pick it back up at some point in the near further !!!!!!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Steve's discharge from Neuro rehab after TBI
experiences of progress in rehab
Advice for services/rehab
No visiting allowed in rehab units
Rehab post concussion
