Why me

i was diagnosed in April 2001,I was told PBC was like a cold my immune system was attacking my liver just like it attacks the common cold.

I was lucky and found the PBC foundation shortly after having my liver biopsy.

Now in 2012 I am waiting for my tribunal case for long term sickness benefit,my memory is rubbish I.can be talking and all of a sudden have forgotten what I was talking about,I go out in my car and forget where I am going,my husband,children and grandchildren all just accept the strange things I do as it's "mum"

I now struggle to walk with osteoporosis ,osteoarthritis and bursitis I take 13 different medication every day for those three and a hiatus hernia,and PBC I have invested in a pre-payment certificate.

I have now been awarded a blue badge so this will make it easier to use my scooter.

I took redundancy from my job in October 2010 as I had really struggled for the last 3years at work I got up went to work,came home fell asleep as soon as I sat down woke about 9 pm had a snack went back to sleep got up went to work ,I hear you think we all do that ,but I didn't do anything else ,weekends were shopping,and seeing my family,if I stayed awake long enough.

Over the last 18 months the itching as got worse I have a spray bottle and ray my feet to try to ease it,I have chillo to and they are great for keeping my feet cold the tiles in the conservatory are also good at times to stop the burning ,the sensation of having liquid poured inside my leg is a n odd feeling,I also suffer with the sensation of all my insides shaking ,it's strange but some off these things you just accept as things that happen to you and don't always tell doctors about them for fear of being labeled strange.

I now do washing and ironing (instead of going out and buying more clothes)in my own time,my poor hubby needs another wardrobe now for all of his clothes that are neatly pressed.

I am about to fill out the forms for dla wish me luck

3 Replies

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  • Hi Neata,

    Your odd things sound normal to me. :-) Can I just suggest that you get help from your local CAB to fill in the DLA form. I didnt and was rejected. When I spoke to someone about it they told me where I had gone wrong, by not taking my worst day senario, I said I struggled to go out but in all truthfulness if I have a bad day then I just dont go out. So please get help with it as with the memorty/consentration issues is bad enough ready and answering the questions.

  • I wish you luck Neata.

    You don't say how old you are, I am 47, diagnosed Dec 2010.

    The year before I started with the itch I changed jobs, went from part-time 20hrs per wk into around 48/50hrs many wks (stand-in shop manager at a small chain shop). I started to feel extremely tired due to work and then the itch surfaced.

    My husband obviously got very worried and we visited our GP. Was a further 7mths before I got the diagnose of PBC. I'd not had a holiday from work for almost 7mths due to not having another shop manager to fill-in and when my husband and I got 10 days away together camping in July 2010 it was then he reckoned I should quit working in that particular job, it was doing no good, the long hours, meetings away from home for the day (more travelling). We could manage as he said, he works full-time, no ties plus I have a small private Widows' Pension from my first late husband still.

    So after much debating the pro's and cons and with still having questionable blood results, I decided to hand in my notice and I'd seek another part-time job. I regretted leaving my previous one as there was no stress nor responsibility, the full-time one had come too late it seemed.

    I felt much improved in the few mths before I got the diagnose of PBC and it is fair to say the tme at home (we had our first grandchild who wasn't a yr old at the time so see my daughter and grand-daughter more), I did feel more normal (with the exception of the itch).

    I've found the frustration since finishing paid employment (tho' I was fortunate to be begged to return to one morn a wk voluntary work I managed to fit in with my prev part-time) has come more from having PBC...

    I have applied and been for interviews for part-time jobs and if I dont' have to mention anything of a medical term I don't.

    The hospital consultant I saw just after I finished in paid work happen to say I 'was retired then' which I took offence to and then on seeing him after PBC diagnose and expressed a wish to be handed back to my GP so I wouldn't have to put down on any job applications that I was 'under the hospital', he wasn't very happy with that!

    At present for me I'm paying for Urso as always had to pay prescription costs, dentists, etc. and as I said to a lady at the Citizens' Advice Bureau when I rang a few months ago to make any enquiry I'm fit for work at the moment.

    I think with PBC there are a lot of grey areas and I know with PBC everyone is different, how it affects them. I found it interesting reading the DWP website as PBC is featured on there.

    All the best.

  • hi, ive just got a form fro, the DLA to reapply for my award. reading your blog i noticed that you say PBC is mentioned on the DWP website but i cant find it, can you let me know how you were able to find this please if you dont mind.

    by the way if you half a bath before your going to bed and you put baking soda into the water it really helps to calm down the itching. i now buy about 3/4 tubs at a time. hope your well.

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