A friend came by earlier and remarked that she’s never seen me this low before. She worked out that it’s all the worry about the Corona virus that is sending me spiralling down. Basically I snapped the poor woman’s head off when she came into my studio and started chatting about it 🤭🥴🙄
What is getting to me is that I’m already struggling not to itch my scalp and face, worrying my head off about our finances - or lack of. Worrying how we will cope if I get sicker and my husband has to quit his gig economy weekend job.
Also the prospect of the extra rigmarole of washing itchy hands, adding to the already long list of stuff I have to try to remember ie eye drops, Vaseline for lips, gaviscon before each meal, our exhibition preview and talk in 3 weeks and how all this is going to pan out for us all. Just the prospect of trying to avoid getting or spreading this virus fills me with gloom.
Most of the time my hyper active immune system keeps me virus free. But throughout my life I’ve had spells of getting everything going around and then getting pneumonia or bronchitis or sinusitis and taking months and months to get better. Then flaring everywhere as my jiggered immune system decides to launch a full scale attack.
I don’t know how Lupus feels compared to Sjögren’s - but having Sjögren’s, Raynaud’s, SFN and EM as a combo feels like having mild flu 24/7. Coronavirus on top would just be horrible.
So we came home talking about buying a small chest freezer for our tiny home and stocking up on veg and berries and food for the dogs for a self quarantine.
Then I found a letter on doorstep from my dermatology professor. Never mind the content - the opening sentence was enough to make me smile. I don’t know if she’s right about what’s wrong. Personally I don’t think the stuff on back of my hands is eczema. But having her write that it was a pleasure to see me again was so very lovely that I can put up with a likely skin misdiagnosis!
The itching has eased up a bit today. In effort to work out trigger I didn’t take my esomaprazole as thought perhaps it was the culprit at 40mg daily. But I woke with hands so painful I was unable to lift duvet or administer my eye drops and as usual these days I’m hoarse, coughing, wheezy and tired beyond tired so I suspect it’s all part of a flare up.
Also I’ve been holding off mentioning this here out of a mix of silly pride and superstition - but I applied for PIP again last year. I had the most awful assessment in early October and received my letter saying no - 2 points for toilet issues only / with the most horrible and inaccurate account of my interview. I duly went to CAB with it and the older woman went from sceptical about me (too well looking and well spoken to have much wrong?) to an expression of disbelief. She assessed me using the criteria the PIP assessors apparently use and scored me about 14 points. She then completed the mandatory reconsideration form for me and copied everything and at her advice I added in a few more recent clinical letters describing my severe and intractable fatigue typical of Sjögren’s and other CTD stuff.
So today, over 2 months since sending it off within the time frame, I braved a phone call to the PIP people to ask what’s going on. I have a CAB legal team meeting in 3 weeks time am so needing to prepare myself. When a chap finally answered I was on toilet with my usual morning runs, cough and laryngitis. He finally extracted enough info from me to look up my case and apparently they are working on it just now - awaiting responses from...? The only named doctor I gave was my GP so I’m guessing they have asked for GP input on impact of fatigue etc.
So here’s the thing: I’ve never mentioned how badly affected I am by this wretched Sjogrens / CTD stuff to any medical professional. In fact I go to every appointment in a positive mindset no matter how crappy I’m feeling. And lately I’m averaging a GP appointment every ten days or so due to various simmering rubbish - sinuses, ears, vitamin D, dry cough with breathlessness etc. But in order not to be thought a “heart sink patient” I try my very hardest to be jokey and stoical.
I just don’t think I can ever change how I am with doctors now. So I’m guessing my GP will tell them I’m really not that badly affected by my various conditions.
My husband has convinced me to see her again tomorrow morning and try to be more honest about how low I am and why. He says I do need to fight for PIP so I must stop trying to be likeable and tell it as it is. Of course it may be too late for PIP now but I plan to explain to her about the all body itching and constant flu-like state and hope that maybe this time I can fess up to how low I’m feeling, fears about Corona and decision about restarting MMF, if my new rheumy even allows to.
I certainly don’t want any anti depressants. I just want to have enough money to contribute something towards household costs so I don’t have to feel not feel so guilty when my husband goes off at dawn every weekend with our car and does agency care work for 8 hour stretches for peanuts. He quit his last contracted job because I couldn’t cope on my own with dogs and household tasks after I’d fallen and fractured ribs and slipped my L5/S1. Not earning a bean or having the capacity to due to fatigue is destroying my self esteem and generally doing my head in! Not good for any relationship let alone a working one as well as personal one.
PS what is NOS?!
PIP Award Lupus SLE 
