Bad morning (not in the good way)!

Sunday (my day off YEH!!), woke up with massive headache at 5.30am. The breakfast routine... liquid and Omreprazole (check), liquid and Naproxen (check), food, liquid and Pregabalin (check), toilet (check)... OMG first time in two years with this disability ( could not clean myself and the tears came).

I have fought and fought this thing, the doctors wont/dont help, the medication wont work, not disabled enough (Fibromyalgia, Polymyalgia, Fibrous Dysplaisia, RA, PCOD, Bilateral Ovarian cysts) so no DLA, I live on my own so no care, the OT is like a 'Blue Moon' or 'Hens Teeth'.

And yet I have to smile and get on with things, HOW!!!!

9 Replies

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  • HI Tibby

    Just read your posting. I sympathise with you, it must be so hard to live with Fibro & be on your own, but you sound like you have spirit, & that helps, also a sense of humour is a must.

    I dread needing the loo soon after I wake. I also have osteoporosis & osteoarthritus in my back & hips, causing obviously pain, & serious lack of range of movement when I first get up.

    I know we are supposed to me decended from the apes, but I need arms like one to clean my butt!!!

    Take care & keep smiling, hope it helps to know others care about YOU! xx

  • Thanks, since being on this site I've learned so much. I would not know what to do without it now. x

  • Hello Tibby I really feel for you this fibro is bad enough without you being on your own, but you can always come on here and rant and moan as well as knowing that we are all here to help and comfort each other. Regarding the toilet needs, my OT actually supplied me with a little device called a sunflower as I have the same problem cleaning and reaching round to clean my butt. I hope no one minds or is offended by these remarks, the little device works by you putting toilet roll over the top and with the long handle attached you can reach round. I hope this helps you get sorted. Gentle hugs Violet xx

  • bless you just sending you so much love and hugs diddle x

  • Hi ChristineEls. My GP is not very helpful, she labled me as a malingerer and when I complained she brought people into consultations with her as 'she was afraid of me as I may get angry'.

  • hey tibby. i no exatly how you feel hun, im on my own also which is a real pain but then when i just cant do things i dont need to and no one is there to make me feel guilty, i have a travel kettle ,tea, coffee milk and suga in my bed room so i can stay in bed and i dont have to struggle to make a drink, i dont have any help from nhs ,dla or income support ,im on the lowest they can pay me i dont see an oc or social worker .i dont no that many ppl lol as i have just moved to this area, but as you i keep smiling i keeep struggling and keep trying to get help but mostly i try to look at what benefits i get from living on my own and deal with the illness when it gives me no choice this site tho has been a life saver as i can communicate with ppl who understand this disability

    so keep smiling hun we have nothing to lose and it helps to stay positive

    love and gentle hugs

    lyn,

  • Hi Tibby I'm in the same boat as you with living alone and not getting much help from family. I've had to fight for my ESA and now with cancer the MacMillan nurse has applied for DLA for me but I fully expect to be turned down again. Trouble is although you often win on appeal, it's hard to get my head together enough to gather all the evidence I need. I have had good help from Social Services too.

    Bless you I came within a milli-second of wetting the bed recently when I was too fatigue to get up to go. That made me cry!

    Thinking of you xxx Christine

  • hi Tibby now how you feel .

    and i now this may be the last thing you need but you have got to try to smile :) as if you don't you will start to cry and whant be abel to stop . and the thing with that is whan you do stop you are in so much pain :)

    god it is so hard and yes easy for me as i have a very supper careing hubby ( they trou the mould away when they made him )

    but try to smile and if posibel a littel giggel at you self ( it takes less enegey )

    i think we should put it out there for someone to invent a butt wiper they have wipers for everythink else but not a butt wiper

    shame on them or i now put an add in the paper for a job vacency to us all we need a butt wipper . that huck preacher had one in prison so why can't we have one . :)

    but mane thing please smile :) get up and smile :) as the more you smile the more enegey you save

    as it takes more enegy to cry and frown than to smile :) we all now how hard it is but try . try to smile to lagh and be strong

    soft hugs from me to you and if you feel you need to talk just inbox we are alwys hear for eachother .

    as with out this site i would just curl up in a ball and give up

    so thanks to you and everyone else thank you

    kath

  • Hi Tibby, It is easy to get cross with yourself because of the constant pain at trying to do normal things.

    I seem to have tried the same medication as you but had too many side affects with pregabolin and naproxin. The omeprazole is a big help and no side affects only the good one of reducing the heart burn and gastric discomfort.

    It is frustrating for all of us that we are not considered fully disabled, but for me, 14yrs with fibro it seems things are beginning to change now and there is gradually more recognitionof the problems with fibro.

    Try not to lose heart and if you need a good rant this site is the place there are a lot of good people on here to support you

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