Fibromyalgia, single parent of 5, NO support network

[Immy1]

I was diagnosed with fibromyalgia 5 years ago, when my youngest child was 6 months old. Although had been having chronic pain for 17 years beforehand.

My GP is now having me tested for MS as my optical nerve is flaring, along with having deteriorating developments with my legs/hips.

I have 6 children, although my eldest has now moved out, I’m home alone with 5 children 5,6,13,15,15,16My teenagers are all girls and the hormones, stropping etc is in full swing. If I ask any help of them then I get the moods and the ‘it’s not fair’ thrown at me. And honestly, They are right! It’s not fair, and I hate sometimes having to ask things of them. And it really is only sometimes, because I will be immobile and crying in pain before I ask anything of them.

I have no support system, I was raised in the ‘system’ and only have contact with my grandmother who is heavily disabled and elderly, and stubborn. She is refusing help from anyone other myself, but I just can’t help her anymore.

and I have no friends or social life as I just had no energy left to maintain those relationships.

my ex husband was emotionally manipulative, abusive and quite possibly a narcissist. When I finally ended my marriage, he moved in with someone else 5 months later. He’s not seen or spoken to any of the children in 4 years.

I’ve spent the last 5 years pretending I’m not disabled, and I’m just too tired now to keep pretending. I’ve put in for extended leave from my job, and am hoping to leave my job and claim pip.

my gp told me to self refer to adult social care, and they have said they can’t help me. My pip claim wants all the documentation of why I’m claiming, but beyond the diagnosis 5 years ago and the events leading up to it, I’ve not seen the GP once. They only offered gabepentin which made me too sleepy to be able to parent, and after that said there was nothing they could do for me.

honestly the pain is more manageable not being on pain medications, so there’s no being used to lower levels of pain and then the meds stopping working and being in excruciating pain. I’ve just learnt to live with high pain.

so who do I go to for help?

who can help me apply for pip?
who can help me have a plan for the days I can’t move?
who can help me to rest? Since that’s all my gp prescribed to me 2 weeks ago when I went in crying because I literally can’t live like this anymore.
what is going to happen to my boys if I do have MS and get even worse?

Am sorry that you are going through this, it sounds as if things have got pretty bad.
Applying for PIP it is best to have help with the form rather than help later appealing. I suggest that you call your local CAB and ask if they can do this. They might also be able to do a benefit check for you if you do end up on reduced pay if you are signed off. If not try a charity related to your condition as they understand the terminology. Does your employment bring any health insurance, any access to counselling any occupational health? If so make use of it. PIP is based not on your diagnosis but on how this impacts on your day to day life, what can you do and not do, what adaptations have you done to make life easier?
Work out what changes to the domestic routine would make most difference to you. Sit your children down, possibly the teen girls separately from the 5 and 6 year old, and tell them exactly how it is, not when you are crying with tiredness but when you are able to be calmer, explain they need to pitch in with house related stuff to take some load off you. If they are involved in the discussion and planning of who does what they might be more invested in doing more. Even the little ones can get involved in some jobs.
Small steps are okay as long as they move in the right direction.