struggling with UCTD -advice needed re PIP

[April2018]

Hi all,

I have really been struggling with UCTD. I have been on hydroxy for the last 3 plus years with no tangible benefits. The symptoms are constant, really debilitating. Widespread pain and horrible fatigue, dry mouth and eyes and nerve pain ( burning feet and hands especially at night), sensitivity to cold. Yesterday after a couple of hours work, I struggled to walk home with extreme fatigue, my eyes were almost closing, feeling sleepy and numb. My sleep is disturbed with no or little quality. I am aware how UCTD affects my mood. I find my mood really low when fatigue is at its worst. I try to practice mindfulness to accept and cope.

I am a single mum, working part time. My work gives me a sense of purpose and I find it rewarding and meaningful. I am struggling physically, financially and psychologically and don't know how long more I can keep going like this. I prioritise work and my child's care. Mostly unable to attend cleaning etc, do very little. Doing chores is an everyday struggle.

I am thinking of applying for PIP. I tired it in the past but didn't get enough points to qualify. I'd like to apply again. I am wondering whether any of you who are also trying to manage work with an autoimmune condition were able to get PIP. Your thoughts and advice are much appreciated.

Stay well and strong.

[April2018]

Thank you for replying. Apologies but what do you mean in your last paragraph? Thanks again

[BonnyB]

Do you manage a good night's sleep without being disturbed by pain or having to keep going to the loo because you drink so much through dryness.If so go to gp. I've recently started on gabapentin for nerve pain. It's made a huge difference to my sleeping pattern, which in turn helps me to cope.

Xx

[Awwy]

Hi April2018

Really sorry to hear of your struggles. PIP is not about your diagnosis or what medication you are on. It is about how your conditions impact you. When you fill the form in focus on what limitations you have. When you have the assessment via phone tell them what you cant do.

scope.org.uk/advice-and-sup...

This website might help you.

All the best.

[April2018 in reply to Awwy]

Thank you. I’ll check the link.

[diane1428]

yes. I was on PIP when first applied and was accepted immediately. Mind you I was having a very bad time with aps/lupus.

[April2018 in reply to diane1428]

Thank you for replying. Were you working when you applied for Pip?

[Poshcards]

in the beginning with my Lupus, I didn't get anything, as I wasn't aware that I could then it was suggested at work to try. I was awarded the lowest care payment, which helped pay for my meds etc. I was retired at 56 when my Lupus got the better of me, I applied again and got the full care and mobility component too xx

[Katrina999666]

You might find the fightback 4 justice website helpful when filling in your PIP application they have very useful material to help aid you answer the questions relating to your various conditions when referencing how UCTD affects your daily living activities