My story/ help

[Fozzy81]

my story is I contracted BM in march 2021 was in a coma for 8 days and in hospital for 24 days, before meningitis I was working 60 plus hours a week . I did try to go back part time but I just couldn’t do the job anymore, and had a meeting with my boss and was let go . Worked there for 10 years …. Even now 3 years on my balance is off which leads to me falling , server headaches, joint pain especially in my knees, I’m totally deaf in my left ear , I have terrible mood swings, lack concentration, . I’m allergic to codine have tried various pain meds but nothing works, the doctors told me there’s nothing more they can do, my quality of life is non existent, I don’t even leave my house anymore

I applied for pip was awarded no points , I feel that I’m not listened too . I’m struggling financially currently getting uc and what I get doesn’t even cover rent …… I can’t get help from family as both my parents have passed … so I’m totally alone

[IndieRabbit]

If you can, try contacting citizens advice regarding pip. Pip is terrible for their assessments, I have a friend with cerebral palsy (a permanent life limiting disability) and they took it off him at one point. He appealed and got it back but based on what I know, they will try and turn you away if they can.

Regarding the illness after-effects, they're truly terrible. When I tell people I had meningitis when I was a baby they feel bad that I had to suffer the terrible illness. I don't really care an it that part, I can't remember it and if I could it's been and gone. I can't say the same about the brain damage.

[Cryptococcal_Ninja]

Well don't feel alone as there are many of us dealing with the aftermath. I survived cryptococcal meningitis 5.5 yrs ago and left profoundly deaf in both ears, balance still not recovered, have nerve tweaks, less energy, etc. Damndest thing is many don't understand what it can cause as it's not easily recognizable. No doubt it's disturbing at how much of daily life we once knew is gone or seriously altered in a snap. We are alive for a reason, just say the hell with annoying side effects and find some good in each day you wake up. We gotcha!

[Yvonrose]

Try to get a doctors appointment and explain you need help to get pip. Hopefully they will listen when the doctors get involved.

Good luck and give yourself priority

[Lilypad56]

hi

So sorry to hear of your plight. Pip are terrible to deal with and will give you nothing. What you need is medical evidence they cannot dispute that so readily. If you have any difficulties at home you could contact social services and get an occupational therapist assessment. You are legally allowed an assessment. You have to stress your difficulties at home. They can provide you will equipment and should include all your illness and catalog the events. I also suggest you see if you have a local support group for brain injuries.. mine in Leicester is headway. They can slso support you will pip. You can also contact your consultants like I did, I rang their secretaries and requested a detailed medical report. Seeing your Gp and off loading and advising them of your difficulties. You can also request from your Gp lists of medications and your medical file. Do you have any records about leaving your job? It sounds like you were unable to work due to your medical state. Any letters from your employer would back you up too!

Wishing you all the best and hope you get things sorted.

Kind regards,

Susan

[Witchy46]

hi so sorry for what you’re going through, if you’re on UC are you giving them fit notes? If not then start doing so having them say that it’s bacterial meningitis dating them back to when you finished working if possible , keep sending them in , you should then get a form from UC for Limited Capability For Work and Work-related Activities. If you get awarded it it’s an additional payment of £396 a month but you might need help with filling the form in but be honest with your answers but answer as if every day is your worst day. Please speak to people like your GP, the specialist, citizens advice and Headway plus Meningitis Now. They have a help line where you can talk to someone about how your doing and can offer help.

I had BM in May last year it’s left me completely deaf in my right ear and partially deaf in my left. I’ve only just had a balance assessment and need more tests. My best help came from the infectious diseases specialist I saw, she was great and made sure I eventually got the right help I needed.

Try to rest as much as you can and try not to get too stressed I know it’s hard but keep going and you will get through it.

[kelpie25]

Join "Benefits and Work", an independent organisation which has numerous guides about making PIP/DLA/AA claims. The annual subscription is under £15 and I guarantee you will never spend a better similar amount. DWP don't make things easy for claimants but these guides on claims and appeals are absolutely the best. They do have some videos too. Good luck and let us know how you get on.