Psoriatic Arthritis flare ups and PIP blue badge etc.

Hi everyone,

So, I have suffered with swelling to my joints for around twelve years now. Had operations on my knees to remove cartilage due to misdiagnosis. Then finally being diagnosed with psoriatic arthritis around 5 years ago. It got pretty bad, to the point I wasn’t able to live a normal life at all, and I suffered with depression so bad, I was considering ending it all. I was given various medications to try (methotrexate sulfaselazine) , and I just couldn’t get on with any of them. Nothing was reducing my pain or inflammation and it was making me feel ill in other ways.

I was then given etanercept after my diagnosis’s for psoriatic arthritis, and it really has saved my life. Apart from when I have flare ups, my life is pretty normal and relatively pain free but still stiff and reduced mobility with inflammation and joint deformities (nothing severe)

I work full time, it’s my dream job and I still can’t believe I got it! The problem I have is... I have been furloughed and only passed my probation period during furlough. I have had more flare ups than normal during furlough and can’t help but think if I wasn’t furloughed I would have been sacked from my dream job by now for excessive time off.

Im currently experiencing a flare up in my spine which is manageable with pain killers, and also in my ankle and foot which is not so manageable and I’m struggling to get around my house let alone anywhere else. It seems I have more flare ups during the winter. The summer I might get one very manageable one if I’m unlucky.

I have today applied for a blue badge, and I’m considering applying for PIP, but I feel extremely guilty. I only need help when I’m having my winter flare ups. If I am accepted for a blue badge, I will only use when I’m suffering because, actually, I like walking when I can because there was a time I lost the ability to even walk to the toilet! Am I being unfair? Should I just struggle because it’s only a few weeks at a time?

In regards to PIP payments, I would only claim for the mobility side of things and probably only be eligible for the standard rate. Again, I feel guilty because I do technically work full time on a great salary, my medication means I have more good than bad times. But I feel like if I wasn’t furloughed this year I would have lost my job this winter, and pip would kind of be a foot in the door when I need extra help.

I have a very fit and healthy partner who sees my condition and how it affects me as completely awful, but because before I met him I had got to such a low point, even wetting myself because I just couldn’t get to the toilet, I’m more than happy with the life etanercept is giving me, despite still having issues! So I am feeling a bit confused.

I also struggle with asking for help and I think it’s because my poor mum asked for dla because she was so unwell, she died in intensive care and a day later I opened her letter from dwp, who stated she wasn’t deemed ill enough for financial support. This is why I didn’t apply for any support when I was really unwell. Being told I wasn’t would have just tipped me over the edge.

Sorry for the long post. I just don’t have anyone that understands to talk to. Apart from my partner, no one ever sees my illness, and they seem to think of arthritis as just a bit of an ache that I can take painkillers for!

Comments

  • Tom
    Tom Moderator Posts: 198

    Greetings and welcome to the Forum, @PsoriaticVic, I am sure that you will find others who have had similar experiences, communicating with whom will make you feel less alone.

    You have had a rough 12 years with missed diagnosis, the loss of you mum under difficult circumstances and now work worries. On this last point, I have made a colleague aware of your post and hopefully she will be able to find you some advice.

    Here is some general information on you condition:

    Psoriatic arthritis | Psoriatic arthritis | Causes, symptoms, treatments (versusarthritis.org)

    Good luck and let us know how you get on.

    Tom

  • frogmorton
    frogmorton Member Posts: 26,666

    Oh Gosh @PsoriaticVic

    You are having a tough time!

    I have loads to say.

    Firstly your poor poor Mum wasn't treated rightly at all. I can see why that made you lose faith in the benefit system.😠

    Secondly you are just the sort of person who doesn't get awarded benefits because you play your symptoms down too much! You need PIP and are entitled to PIP. It will help you to stay at you dream job because you can get a cab into work if you are struggling for example.

    I really recommend you apply, but get support doing so - Citizen's advice for instance because they know how to word replies. Us normal people don't and you would be playing it down which will stop you getting it. I admire your strength very much, but it will work against you.

    The blue badge - you need too it will enable you to park nearer to work/shops so you can save your energy. You are quite right not to use it of course when things are going well, (my own youngest had one when she couldn't stand at all with leukaemia, on good days we did without), but on bad days it can be a life-saver. In your case a job-saver.

    Finally have you talked to your medical team about your struggles this year? It may be that they can offer you something else in addition to your etanercept (a short course or oral steroid or a depot steroid jab for example) to get you over the flare.

    Keep posting we can support you ((()))

    Love

    Toni xxx
  • MoWW
    MoWW Member Posts: 65

    Hello @PsoriaticVic

    I am sorry to hear about the difficulties you are experiencing, many inflammatory conditions fluctuate as you describe. This does not make them less serious and this is recognised under the Equality Act 2010. PIP is payable to anyone with a long term condition or disability who can confirm how their condition impacts on their everyday lives. Describing on the form how the condition affects you , when you are experiencing flares and pain will enable the assessor understand how you are impacted. Having support to complete the form is key as we often make assumptions that the assessment team at DWP understand our conditions and the various ways it affects us. I suggest checking out a useful booklet produced by NRAS on claiming PIP. It is aimed at people with RA but the content is relevant to almost anyone with inflammartory arthritis. Personal Independence Payment | NRAS

    You do not say if you need any equipment or adjustments to enable you to do your job - whether all the time or only when you have a flare. Access to work can provide funding for a range of support, this can be used as and when you need it. In addition travel support such as taxis to and from work may be helpful when your flares make travelling on public transport or driving difficult. Get support in work if you have a disability or health condition (Access to Work) - GOV.UK (www.gov.uk) You can ask for an independent assessment where someone will discuss your condition and the work you do, they will write a report recommending what would assist you. Equipment can be provided for the office or home or both if required.

    My contact details are within this link if you wish to get in touch to discuss any of this,

    good luck

    Maureen @MoWW

  • Mike1
    Mike1 Member Posts: 1,717

    PIP is intended to cover the additional costs faced as a result of disability.