LUPUS UK
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PIP update ... the (very) long and winding road

So for anyone who has been following the saga that is my PIP appeal I thought I’d do a new update. If your memory goes back that far my first appeal was back in February and the decision made was based on inaccuracies and didn’t apply the facts to the guidance properly etc and as my case is quite unique with regard to the mobility element whereby my photosensitivity is a major factor I was granted a new appeal with a different judge which I was told would be allocated double the normal time to go over everything in more detail. I requested a telephone hearing and was told if I couldn’t attend my advocate could attend on my behalf ... because the disabled charities and CAB can afford for someone to waste an entire day going to a hearing an hour away obviously.

So despite requesting they reconsider this as any advocate would be unable to attend, they couldn’t provide me with a safe environment last time and it sparked off a flare that I’m still not fully recovered from and my consultants at Guys would confirm it was unsafe for me if requested I have just received a hearing date for next Tuesday (24th).

I’ve sent a letter explaining that I simply can’t go. I’m recovering from dysentery which has knocked me off my feet, I’ve just had my hips injected as they got so painful and I have a frozen shoulder which means I can’t drive myself the hour there (with evidence) and is excruciatingly painful at the moment and they can’t privide a safe environment for me if I did. I can’t get a taxi as the windows won’t be uv filtered and it’s an hour either way which just makes it impossible for me and my fiancé can’t drive me, or attend on my behalf as the best person to answer how I’m affected, as he’s just had six weeks of chemotherapy for stage 2 bladder cancer. I’ve even had to cancel my appointment with Guys which we’d have been the same week as I’m simply not able to cope with that right now and that’s been put off for 6 months to give me time to recover properly.

I’ve then sent my statement of evidence. I’ve quoted case law, the way in which the guidance states that the descriptors should be applied, evidence that I saw an adult social care occupational therapist who assessed that I needed a wet room - it was referred to in my first assessment 4 years ago but now the report isn’t in the evidence and I can’t find my copy of it. I do have a letter from the council confirming that I’ve been referred by adult social care for a grant for adaptations to my house though so that proves I’m not making it up. I’ve broken down every descriptor and provided backup evidence on every part - I even paid for a physio to carry out grip tests and provide a report of the precise angle restrictions in my right hand which the report claimed was normal but which hasn’t been for over 20 years following an operation on my wrist and has nothing to do with my lupus - it can’t change. I’ve given in depth arguments about why the mobility section should be reassessed to the higher level by taking the guidance and applying it to my circumstances section by section. I’ve even sent them photos of the huge bruise on my butt from the last time I fell down the stairs when my legs gave way!! It goes on for 11 pages ... as opposed to the DWPs stance that I can drive a manual car so can do everything. I’ve even told them that I’ll keep myself available by phone as I would like the chance to answer questions as nobody else can as it’s so unusual a combination of illnesses and how they interact - even Guys tell me I’m in a very small rare group and the interactions make me pretty unique.

So realistically I’m not expecting to get anywhere despite all that and the cynic in me wonders of the DWP will send someone this time as they will have received a copy of the letter saying I can’t attend.

Right now I’m in so much pain with my shoulder and so tired from lack of sleep that the fight in me is pretty much all dried up right now. Its beyond depressing that after all this the DWP may win by default because my illness makes it impossible for me to attend somewhere that’s unsafe and I’m trying hard not to let the system get me down as I’m still in a better position than many others. I’m consoling myself that at least with the written evidence I’ve submitted someone will actually have to read it properly and assess me on the actual facts now which is all I’ve ever asked for.

No idea when I’ll find out the outcome but will update once I hear anything - by this stage what will be will be.

But if anyone knows how to ease off the shoulder please please please let me know - even the strongest painkillers just aren’t touching it at all and the physio isn’t helping. It’s never ending and excruciating so if anyone knows of anything that brings even the slightest relief it would be much appreciated. Oh and trying to find front fastening bras when you’re “busty” isn’t easy either! Got one arriving Monday but just hope it fits.

Sorry for this one being less positive than usual - just feeling rather dejected by it all tonight and having a pity party. I’m sure I’ll be back to normal tomorrow x

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GO GIRL I wish you all the best . I have sunsensitivity as well it affects me even with factor 50 on I feel my face nipping . although a do manage in the winter . and i refuse to wear a mask, bad enough being a 65 year old hoodie. it makes for a very restricted life. but reading you post I know i am not as bad as you, all the best for you fight

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I have a double whammy unfortunately with the lupus being highly photosensitive and also separately solar urticaria making me effectively fully allergic. Unfortunately it goes into the full visible light range so includes artificial lighting etc and Guys suspect that it stretches into non visible too due to the strength of the reaction. Basically if you can see it I’m allergic to it and my lupus may well react to it. The allergy part is mainly controllable by meds, specialist light blocking cream and avoidance but they don’t work for the lupus - the courts etc are struggling to get their head round it being two totally different conditions and the level to which it effects each.

Which sunscreen are you using? You want one that actually reflects uv not absorbs it and some are better than overs. Try adding on some foundation with sunscreen built in on top as well and it might help.

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Gin (&/or Cannabis). Mine are in bits, it helps, for a while at least, PIP is an arse, seriously, as much evidence you can muster, I hope it goes your way xx

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Methotrexate means I can’t drink unfortunately but it did occur to me as a good solution earlier except I had vodka in mind! Lol. Ive never got on with the other suggestion. As of 1.35am I’ve managed to get painkillers to kick in enough to find a position to lie that doesn’t hurt quite so much but I can’t get to sleep like it which is frustrating. The irony of being so tired you can’t then sleep which I guess most of us lupies are familiar with. Wouldn’t you just love to have a machine like the ones where they recreate labour pains for men that could let the PIP lot experience our lives for a week? They’d get it a damn sight quicker then I expect lol

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Xxx

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Milford,

Sorry to hear about the PIP trauma.

As for the shoulder, I have a torn rotator cuff in my shoulder, very painful.

Did the same to the other shoulder 3 years ago.

I use small ice packs wrapped in a towel to relive the pain, doctor suggested it. I also sleep with a pillow between my shoulder down to the elbow to ease the strain on the shoulder. I take soluble paracetamol to try and east the pain, I was only getting 4 hours sleep after I fell over 10 weeks ago, so can sympathise with you.

Worth a try.

Good luck with PIP.

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Hi mifford

So sorry to read what a tough time your going thru one way and another and still recovering from that dreadful dysentery!. Pip is a nightmare you can certainly do without!. You've put together an amazing case , I just hope you can sort out this hearing for Tuesday and a bit of common sense prevails although I won't hold my breath!.

Do hope the hip injections work, if it's not too much steroid you can have one into your shoulder for frozen shoulder as its not getting better. Have you tried ibuprofen gel?. Are you sure it is frozen shoulder?.

Your such a fighter mifford that you deserve a good outcome. Keeping everything crossed for you. X

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Hi misty - thanks. The physio has diagnosed it as adhesive capulitus (frozen shoulder) but it’s not been scanned or anything. She explained to me how it works and which movements it restricts etc and how it gets worse at night and it all seems to fit though ... and then she did this thing that stretches the capsule in your shoulder and I could have punched her. I’ve never known pain like it! It did help her stretch it more afterwards though and she’s warned me that it won’t be a straight line improvement and it’ll get worse at times etc. Funnily enough although I’m suffering from more pain she tells me she’s getting more movement so the 2 could be connected.

Thankfully my gp has given me some tramadol and I’ve had 2 nights decent sleep so I’m feeling a lot better. I’ve booked in a massage for Tuesday evening with someone who was recommended by a friend who’d had similar shoulder problems so I’m hoping that might help ease it off enough for me to get the exercises working better as well. If that doesn’t help then I’ll definitely discuss the steroid injection with the physio next week.

The hips have been a lot better since the injection and the physio is working on building up the muscles there as much as possible before the bursitis comes back. The left one has just started hurting at night again but it’s eased up a lot from where it was thankfully.

I’m happy that I’ve put the best argument I can forward on the PIP but it’s out of my hands now - although you never know it might be more persuasive on paper without me actually talking to them lol. I’m not holding my breath either though if I’m honest - from what I’ve seen so far there’s a concerted effort to avoid the higher levels on mobility in particular unless it’s impossible not to grant it and because my case isn’t straightforward there are areas that can be used to escape having the guts to make the right decision but we’ll see.

I will add though that the support on here has been invaluable and I really appreciate it as it’s helped push me to keep going when I’ve felt like giving up. It makes a real difference.

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Keep us posted mifford, glad your getting lots of help and advice from the physio. I completely agree re benefits of the forum. It's kept me sane. Fingers crossed for pip too, you've worked so hard on it. X

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So hearing I’m guessing went ahead without me today - I’m now having a slight panic in that I just read that if you didn’t request a paper hearing and the don’t attend they can dismiss the case but as I said from day one on the second hearing that I couldn’t be there and sent my statement as soon as I received the date I’d certainly challenge it if that happened as it’s not me that chose to waste their time!

As I guessed would be the case they didn’t phone with any queries so now I sit and wait for I don’t know how long for the outcome - anyone else with experience know how long it usually takes? I have little faith that anything will be overturned but we’ll see.

In the meantime I went for a massage to help the shoulder and relax as I’m trying to “let it go” as the added stress/anger it causes isn’t helping my muscles! Massive knot on the opposite side on my neck and then all down my shoulder blades and all down my arm and elbow on the left side. Right now I feel a bit battered and bruised as the muscles have cone up very inflamed (she commented that everywhere she was working on was already very “angry”) so am going to take a tramadol and go knock myself out for the night.

One way or the other today hopefully brings the battle to an end and I can start getting on with other stuff instead 😊👍🏻

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For those following my confirmation of the new award arrived from the dwp today - I honestly thought I’d have to wait the 30 days and then chase it but they’ve done it really quickly with no argument so I can finally relax.

And the new automatic car was on order within 2 hours! lololololol Unfortunately the back orders mean I might not get it until March but that gives me time to pay a bit more on my current lease and I should be able to hand that back without any penalties by then so it ties in quite well.

It’s all a bit surreal at the moment and I keep waiting for the catch but it’s a huge relief to know that life should be getting a lot easier soon.

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