OA/FBS/HS etc

PottyLotty
PottyLotty Member Posts: 2
Hi there, I am new to here and would just love to rant for a few moments, please!!
Basically I was born with Herpes Simplex B, this affects my hands and feet severely (Auto immune), at the age of 9 I was diagnosed with Erythema Multiforme (Auto Immune), I went on for several years in to my early teens I started having 'recurring abscesses' and generalized pain this went on till I was 28.. I started with severe pain in my back and legs, to be told I was far to young for Arthritis, and therefore WOULD NOT be sent to hospital..
I moved home, area & GP, my new GP sent me to hospital were they diagnosed early onset OA, in my lower lumbar and knees.
He also sent me to Dermatologists, and they told me the diagnosis of my 'recurring abscesses' Hidradenitis Suppurativa, she didn't stop there, skin fibrosis melanomas (in my hair, on my back, shoulders, on the end of my nose), Pompholyx(Blistered Eczema), I am so scared to go back to see her because she has a new skin disease for me..
I then went back to my doctors recently, after lots of visits in between hospital appointments to basically keep check on my medication (I also have had breakdown due all these illnesses & pain), this is where my doctor has diagnosed me Chronic Fybromyalgia as well as everything else.
I have no support apart from my husband, he has dropped his hours to 20hrs on account for me and my illnesses, also to help me look after our 7 year old son, getting him to and from school.
We hardly have any money coming in, DLA keep refusing me anything above low care (because I cannot cook a meal for myself), I have a walking stick for around the house, also OT have got me a wheelchair that I use alot, and other aids for around the house.
My GP, Dermatologist, OT, Physio have all wrote supportive letter's about how my mobility has been compromised severely, and how I need my husband for daily living tasks to be completed for me.
Still I get refused, I cannot wear tight clothing, perfume, deodorant's (so now I smell like road kill), I get told to exercise and lose weight but I can hardly move, My body gets stressed and run down so ALL these illnesses, diseases breakout rather badly... I just don't know what to do, where to go.... So fed up of all of this, my life.......
Sorry for all my drivel guy's.....
Also thanks for listening to my attitude too!!!

Comments

  • helpline_team
    helpline_team Posts: 2,275
    edited 30. Nov -1, 00:00
    Hi Pottylotty

    A well earned rant! Although from my point of view it didn’t actually feel like it was just a rant. From reading this I feel there is probably a lot more to say and I would urge you to pick up the phone and give us a call as we can, not only listen a lot better that way, but also perhaps be able to support you more, with a few pointers in the right direction too hopefully, regarding some of the issues.

    Best Wishes

    Simona
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hi pottylotty, having read your words I would also suggest ringing the helpline: there are some splendid folk on there, their listening skills are second to none and they are very helpful people. You have a deal going on and certainly need an empathetic ear. I hope things improve for you soon. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Wow, you have such a lot going on. :shock: Skin conditions can be very distressing to live with. No wonder you are upset. Have you got the CAB or your MP involved in your DLA claim?

    I hope you have rung the helpline and spoke to the lovely peeps. Have a look around the forum. The LWA forum is particuarly supportive, they know how to make you smile on a dark day :grin:

    Take care
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Lotty,

    Glad you found the forum and so wish i knew what to say to help you.

    On one thing maybe I can cus I got the lumber oa and well flower I remember thinking ho bad it was going to be and how scared i was but actually its not a bad as you think it will be...

    I agree about getting the mp or dial or the cab involved in the dla thing.. its better to have help there.

    Lotty ring the helplines as well if you haven't cus they might well be able to help with all of it an definitely can help with the oa side.

    Hang in there and nice to meet you. Cris x