advice for someone newly diagnosed

Newly Diagnosed

My daughter was diagnosed 6 months ago has gone from being pretty mobile to unable to stand dress herself or lift arms up at times. Also very sick with bad stomach.

She's cut her days at work and honestly shouldnt be there at all but financially she cant survive.

Anyone got any suggestions can you get benefits of any kind? all ive read seems to indicate its a nightmare getting DLA

Any suggestions on how she might manage her symptoms and does anyone find any drugs useful at all

5 Replies

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  • Hello dayjac,

    Is you daughter in the UK? I myself have been in the same situation as your daughter. Once I was diagnosed I seemed to go straight downhill. I had illnesses and things bug me constantly and was getting to work, but in the end I had no choice but to give up work and this was before being diagnosed. I'm 31 and my husband is my full time carer. Like your daughter I have the same problems most days. Unfortunately I found out early on that I or my husband couldn't get any benefits at all until I'd given up work. I was off work sick then went on to half pay, then no pay. In the end my work finished me up due to ill health, Only then I was able to apply for benefits such as ESA and DLA. I myself have had a nightmare going through the process but I had a brilliant man who helped me and my husband with our claim. I also have Irritable bowel problems. I hope that your daughter happens to find a way to sort things out. I am on the Wirral across the water from Liverpool and can give you the number for the guy that helped me. You can also get help from the CBA and or someone that works for Employment & welfare. If you have any other probs or questions then feel free to message me on here or hopefully someone else may answer your question someone like admin or volunteer. I have found this group an immense help, as nearly everyday I find something else wrong with me and I come on here to ask a question only to find someone else has asked it.

    Gentle hugs

    Kim xxxxxxxxxxxxxxxxxxxxx

  • Thank you for replying, she is 29 and its taken a while to get a diagnosis, GP useless fortunately had private health through her work and got to see a consultant, he just keeps advising give up work but financially she could end up loosing her home!! She seems unable to get physio (hydrotherapy) on NHS and anyway attending all the appointments exhausts her. Because its a chronic condition private wont pay long term. I just dont know what to do to be helpful I live an hour from her and go down to clean etc as often as I can.

    Shes cut her hours at work and they at the moment are being helpful but I worry she will loose her job in the end and psychologically she will be devastated.

    She has a vitamin D deficiency which have read on here seems to go with fibro and the sleep issues are immense in that she often does not sleep!!

    Sorry to rabbit on I guess its a relief to find people who understand

    I will come back to you if we need help re benefits

    Thank youXX

  • hi

    welcome to the sight .. you are among the most clued up members they are great ..

    medication can help but it does take time to find the right ones for you ...

    I would recomend you go see citisen advice for information on benifits and help .. depending on her job they may have human resorses that may be worth talking too

    also she has you and that support is amazing xx

    gentle dyslexic hugs

  • She is on Amitryptaline, but can only tolerate a low dose, it does help a little with sleep.

    They gave her something else for joint pains and she immediatly got a raging headache worse than any she had before, became dizzy and keeled over at work so that got stopped.

    Her work are being ok at the moment she has cut her days down and they are making adjustments but she is so fatigued not sure she can continue much longer.

  • Hi dayjac.

    I pay a mortgage on my home and my husband worked a lab chemist. We explained to the mortgage company and they were able to help us for a while. It's so hard especially when you see someone could lose their home, as if this illness isn't enough. I agree with Lexie, the next step really is to see someone at Citizens Advice to see where you can go from there. This illness really does have a hold on you like nothing I've ever experienced before. I was using a walking stick first because I wanted to at least try to get to work, then eventually I was finding it more and more difficult to walk, even the smallest of distances, wash myself, dress myself I could go on. I now use a wheelchair, a 4 wheeled walker and I have a walking stick too. I am just grateful for all of the help from my family, friends and everyone here. Lexie is also right in saying that your daughter is lucky to have you for support because that will be a great help to her.

    I truly hope that things get sorted out.

    Love 'n' hugs xxxx

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