help with benefits

[Fozzy81]

I really don’t want to claim benefits but at this point I don’t seem much choice, currently working full time in a care home, it’s exhausting, but keep having time off, due to not feeling well or being that exhausted I can’t get out of bed, so it’s come to the point where I feel I have to leave , I’ve worked in care for over 15 years , been at the same place for 10 years , was told it’s a business at the end of the day. I’m not sure what I can do,

[Jonad724]

If your fatigue is an after effect of meningitis, then it can take some time to get over the illness and it's a vicious circle of doing too much followed by tiredness and then not recovering. There's nothing wrong with claiming benefits, you have paid national insurance for a long time and they are there to help at times just like this now. You're not stopping work out of choice and ultimately you have to put your health first.

I know from experience of near fatal viral meningitis that if you keep pushing on things just don't improve so taking a break, recovering fully and then going back to work is often the best solution. My suggestion would be to make an appointment with Citizen's Advice who can give you a good idea of what you will be able to claim.

There is a national shortage of people who are experienced in care work so maybe ask your employer for a sabbatical to give you some time to recover with review points when you can give them an idea of how your recovery is going. They don't have to pay you for this time but it helps you to know that you have a job to go back to if you can and they know they haven't lost a valuable member of staff who would be nigh on impossible to replace.

Stopping work due to illness is not a failure, it's a sensible thing to do and I was off work for nearly 6 months after the viral meningitis attack having had to learn to walk and string sentences together again. For six weeks I could barely get out of bed, and I tried to go back to work after 8 weeks but couldn't even sit upright for long enough to use a computer let alone think about doing anything. It isn't necessarily a life sentence though, after 5 years to allow my brain injury to settle down, I went back to triathlon and in the 10th year after the attack I completed my first half ironman triathlon and have gone on to complete three more plus half marathons and lots of shorter races.

I am now privileged to be a voluntary Community Ambassador for Meningitis Now and so if I can help, even if it's just to be a listening ear as someone who understands what it's like, please click on my profile and send me a message and I can then sort helping from there.

Take care, Jonathan

[Fozzy81 in reply to Jonad724]

I had bacterial meningitis, was in a coma for 8 days was close to death had to learn to walk again, was in hospital for 3 weeks, now I am deaf in my left ear, have constant headache some days are worse where I can’t lift my head up off the pillow without being dizzy and vomiting, have pain in my back was told that’s down to the lumbar puncture I had to have 3 of them ,. Have issues with my knees, constant pain , and thru dislocate easily,. That’s been put down to being off my feet for a long period, was fine before, ended up back at hospital yesterday as my knee gave way and ended up face first on the pavement knocking myself out, resulting being checked out at hospital and having concussion

[Jonad724 in reply to Fozzy81]

It sounds like you are having one heck of a time of it and taking some time off work sounds like a plan to see what you can do to recover. I think it would be worth seeing what treatment you might be able to get through your GP, they might fob you off as effectively they are small businesses and sometimes don't want to pay for treatments which are expensive.

I also live with a variety of side effects, constant headache and also recurrent viral meningitis amongst others. If I can help at all, please do PM me or contact Meningitis Now as they are brilliant at helping survivors remember that you are not on your own.

Take care, Jonathan

[Fozzy81 in reply to Jonad724]

I’ve decided to take time off, for now was put on naproxen for the headaches but doesn’t work, I’m allergic to codine , currently trying to get an appointment to discuss my other issues. The hardest thing is realising that I can’t do what I used to do, I was doing 60 plus hour weeks during covid , can’t even possibly think about doing that now ,

[Preston0104 in reply to Fozzy81]

I had bacterial meningitis back in February had to be restrained, sedated and put on a ventilator for a week. Reading what you put is exactly how I feel.

[Jonad724]

i think that's a wise choice to take time off and give your body time to rest and recover. One of the things I learned post meningitis is that you have to adjust what normal means. What was normal prior to the attack is definitely not normal now. Normal is a fluid concept for me after meningitis. Before the attack I was working 50-60 hours a week, training for a sea based triathlon and being a dad and a husband. Something had to give and it was like someone had, overnight, pressed the reset button on my fitness and I was like a helpless child.

The positive thing is that my aerobic fitness stopped meningitis from killing me but I came within 10 minutes of having my relatives called in. The hospital phoned my parents to tell them they didn't think I'd last the night and my Dad got straight in the car and went to pick my wife up. He did 79 miles in 65 minutes but fortunately it was late at night and there were no speed cameras then.

I think the thing to remember is that you are not failing by stopping work to recover, you are being sensible and recognising that you need to rest and recuperate.

One piece of advice is though don't let the doctors tell you that what you are suffering now is not the after effects of meningitis as at best they think everyone recovers fully in 2-3 weeks. So many people, me included, are told that it's something else causing the after effects even though it's blatantly obvious to you if you're suffering, that it isn't.

Good luck and the offer of help and a listening ear is always there.