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.
How my heart goes out to you for everything you and OH are going through.
How I wish I could literally reach through my cell and give you a very gentle loving hug 🤗.
I can relate to so much you have said. One thing I have learned the hard way is that to have my doctors take me seriously is to look like I felt and be open about my struggles.
I used to always make sure I was pristine visually including makeup and hair.
Plus like you I was upbeat and masked how badly I felt/was doing. I discovered that my outside totally contradicted my
words and my doctors had no other conclusions to make that I making up the medical complaints.
From then on I didn’t wear makeup and my clothing choices were much more low key and I acted like my symptoms.
I finally got them to listen to me and take my complaints seriously.
You sound so absolutely overwhelmed and miserable. It truly breaks my heart for both of you that you are struggling not only with your sickly body but with your living life.
I just said a fervent special prayer for you both regarding everything.
I can’t say enough how sorry I am for you both.
Sending you both much love 💕 and support.
You don’t have to answer this TT and make your hands/body suffer even more.
I truly care about you both and wishing the best for you.
Hugs for your lovely reply EvaJo. Today is another day 😊🤗
KayHimm
KayHimm
3 hours ago
It is so hard not to touch our faces, but good for you for trying to resist. That is apparently the surest entry point - the mouth, sinuses and eyes. I am not as successful as I hoped.
Try not to minimize the impact of your illness on your life. Just your morning routine would make work impossible. IBS is linked to CTD and it is disruptive. Fatigue is hard to quantify but it is possible. Sometimes it is hard to take in just how aberrant autoimmune disease is. It is not normal to attack one’s own body.
My mother with severe heart disease told a friend that this was not sick. Sick was when she had Graves’ disease. Puts things in perspective.
Wishing the best for you.
XK
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Twitchytoes
TwitchytoesKayHimm
A few seconds ago
Kay thanks so much for your comment. I’m going to ask you to copy it and paste it onto my repeat post as I’ve accidentally posted this twice! The other has 2 likes and a long reply so hope you won’t mind switching to it?
Yes I have been guilty of touching my face due to allergies, itching etc for my entire life so it is almost impossible but I’ll try. Apparently this is one of the best and only reason to wear masks - it stops us touching our faces as much! Xx
It's almost impossible that issues concerning the virus will not be playing on our minds.
Being gripped by fear increases stress levels which depress the immune system further.
Everybody has their own approach to situations like this. I seek knowledge to hopefully help me identify best possible approaches.
What makes it difficult in this scenario is that it is a new virus. But viruses themselves are not new.
I have been watching accounts of the 1918 survivors. In one video I watched a lady born in 1907 told her tale. She said that virtually everyone in her community caught the virus but that her family stayed clear of it. She suggested that every morning her mother got them to take a spoonful of baking soda and she believed it may have been helpful.
At the time I just listened. But later a friend forwarded me an email suggesting that viruses are PH dependent.
The American term baking soda refers to the English bicarbonate of soda.
Have a read of this. It references studies done by leading hospitals.
No chance with masks or sanitisers in my neck of the woods. Sanitisers and protective gear being nicked from hospitals in Austria apparently. Germany normally supplies them masks but has stopped exports.
Also look up Richard Cheng's youtube channel. He is a doctor who normally works in the USA. He travelled to China for the New Year and has now stayed on to conduct clinical trials on vitamin C in Wuhan. He has had good results so far.
Print off what you have written to us here and show it to your GP. This is what you share with those who know and like you very much. Your GP has all the consultants’ letters. Now let them see the private you 💕
As to the dreaded virus, my best friend visited yesterday. She’d kept away, not wanting to pass her cold on. We did the new “elbow bump” because her occupation brings her into close contact with a lot of the public. I wanted and needed a hug. Sounds a small thing but ......
By the way all, my Rheumy clinic clearly has a lot of people deciding not to attend. Who would have ever imagined getting called and asked nicely to come in for a review that would normally be three months away? Not only that, but being offered over half a dozen slots?
Thanks dear LK. I’ve now just seen my GP. She couldn’t see any rashes and did think awful itching everywhere might be a reaction to the esomaprazole since she’s doubled my dose. So she gave me a prescription for a strong antihistamine and told me to stop PPI for 3days to see if the itching eases up. I’m to stop the steroid cream as it’s not helping the NOS eczema oh back of hands
I told her I’m very tired, very low and worried about Corona and going back on MMF. I told her I feel as if I have mild to moderate flu always 24/7. She said she wasn’t surprised - she would be concerned about it all too. It is concerning! I told her I was hoping to restart MMF before the new risk because it did seem to help. I asked what the practice stance would be. She said if there’s a clear benefit with symptoms then that’s one thing but if it’s not clear then the risk would outweigh the benefits. She said that my rheumy will have to make this decision with me as she’s the expert. But if she were in my shoes she would want to wait until Corona has been and gone.
To be honest I didn’t come out feeling any less worried or certain about anything but she’s one of those people who just feels like a friend rather than a GP really. And I always feel I want to hug her now rather than sit and moan!
I told her I’m wiped out with fatigue and just want to sleep all the time so hopefully she would confirm severe fatigue. And I said I’m dry as a bone and drinking gallons of water during the night just to swallow and breathe. So I’ve done my best and if she’s still got any PIP letter to write then I think she’s say I’m feeling as jiggered as I am!
Now hugs from me to you - they are real even if they are virus-free cyber ones 🤗🤗🤗
Sounds like good advice from the GP, TT. I don’t hear « friend » but doctor with good judgement. Interesting that the esomaprazole could be the culprit. 24/7 flu is not something most people can go to work with. I would think this level of disease activity would be significant when determining functional ability. These diseases are so variable in that way. My cousin with lupus works full time and has since diagnosis many years ago. Her lupus flares come in distinct periods with pleurisy, which is treated successfully with prednisone. She has had mild joint pain and now has liver issues from NSAIDs. Her biggest problems now are not lupus but liver damage and heart disease. These are very serious. But they don’t keep her from work. I am just making the point - as my mother did - that severity is not the same as misery or ability to work (or live happily).
I have a feeling your new rheumatologist will not start the medication until the Coronavirus has died down. What your super GP said is exactly how my neurologist explains it to me: the benefit has to outweigh the risk. And remember they have to emotionally accept the responsibility when those risks become a reality.
Thanks Kay. Yes I think my new rheum will probably decide to delay too. I’ve had 2 years of delays and really feel my body would like a break just now. Strangely my GP didn’t equate improved blood work from dmards overall with benefits but, in my case, symptom improvement absolutely does go hand in hand with a lower PV/ ESR, CRP, immunoglobulins, blood in pee, lower BP and weight and so on.
Strange that she doesn’t grasp this synchronicity between symptoms and signs though? I certainly do feel that my signs and symptoms go hand in hand as measure of disease activity? I was really looking forward to an improvement in flu-like symptoms I admit and this is why I’m feeling sad. X
That would be disappointing. Let’s hope this virus dies out in the heat and it will only be a matter of months when you can get started. The rheumatologist feel the increased risk is worth taking.
She won’t. I feel doomed even though I know my doctors are right as they don’t want any more patients than they can possibly avoid being immunesuppressed.
Anyway the itch has progressed to become full on SFN pain in my legs now so you were right in your theory I think. I get my bloods done on Monday morning for rheumatology so we will see. X
Well, all of this has to be taken into account. She may very well say you are too symptomatic to not be on medication. It is hard, I know. At times like these we just have to trust our doctors. Not easy decisions for them.
Well I got a handshake from an older man with prostate cancer and a certificate for my six year service as a lay public partner for NHS Scotland so human contact led to me rushing off to the loos and washing my hands to Rees Moggy’s anthem! Xx
I feel guilty now. I’ve amassed quite a lot, but not recently. Sloppy dog poo picking up made me a bit obsessive, as well as my own bowel problems + badly equipped public loos.
Problem is that I’d run out and was using Tea Tree biodegrade-able wipes because the alcohol was making my hands even itchier. I don’t think Tea Tree is quite the same as full on alcohol! Xx
NOS, in regards to diagnosis means: Not otherwise specified. As in, they are saying it is Eczema, but not breaking it down beyond that. In medical-speak it leaves room for things (more specific testing or development of future symptoms etc.)later or means it’s the best dx at this time. Hope that puts you more at ease. 🌹🍀😘
Thanks DR. Yes I was curious rather than uneasy about it but, having suffered from eczema for a lifetime, very severe at times, I also know this isn’t eczema. So it is reassuring that she’s written NOS in this context. Xx
Sometimes they put it when the diagnostic codes don’t specify it too. Like if it’s secondary to something else or if someone else diagnosed it (patient states “has had XYZ since the age of 5.”) and they are taking it as part of historical fact. This would also be part of what I said above.
Eczema is a rotten thing to be saddled with when you have other things too. It’s just plain rotten! My daughter has it too. From the crown of her head to the bottom of her CRPS feet. 😘🌷🤗
Oh no poor love. Hope she grows out of it as many do.
However I didn’t until I got to my menopause when it mysteriously disappeared. I got it so badly with my first pregnancy that I was hospitalised on a dermatology ward for a few weeks.
Now I only get strange skin related stuff or dishydrotic eczema when my Raynaud’s and EM/ circulatory problems are flaring. And it isn’t true eczema because it doesn’t belong to the allergy or homomal side of things and presents differently. I think this is similar. I woke in the night again in agony of painful itchy prickliness hands and arms and dry coughing. I had some gaviscon and a PPI and my cough settled. I took pics of my hands in the dark and realised that at least part, if not all the itching, is erythromelagia as my hands were red and swollen. X
I'm really feeling for you at the moment with so many health problems your having to cope with and this Coronavirus worry. It's something we can all do without specially at the end of winter!. It's an added pressure too as we're worrying about shoukd we have extra treatment that's needed but puts us at increased risk!. I too am flaring at the worry of it all and wondering about treatment and whether my op will go ahead!. Then you've got the added worry of having to deal with the DWP and PIP. Do hope you get it to ease your financial situation. Glad you went to CAB but slight shame you didn't add your new Rheumy Consuktant as that might have impressed them. I bet you didn't because she doesn't know you yet!. Hopefully GP will be GREAT specially as you've just seen her. We musnt underplay our suffering as flu- like for 24/7. Is no fun!. It's a big worry not being sure how we'd be with corona.
I've just had a brill telephone appt with my pain Consuktant and I mentioned corona and she said the media is whipping it up!. It's not as strong an illness as flu and subsequently more people have died of flu complications than this virus. Our local hospital is running smoothly at the mo but things can change quickly!.
All the very best for your Rheumy appt. do hope it goes well and the DWP give you the right result. Xx
Oh poor you, TT! I almost cried at your description of charming doctors. I know I underplay my troubles to please and still am judged aggressive. Every time I have been in the hospital, mostly for very serious illnesses, I have felt a need to be funny and charming and entertain everyone in sight: doctors, nurses, visitors. I wanted to be visited and liked. Although a shy person myself, I channel my sociable, gregarious mother to whom such charm came naturally.
i wish I were the crude, rich stereotypical American of movies and the world's imagination, so I coud buy all the contents of your studio for a king's ransom and then open a gallery and make you famous!!! 🤩🤩😍😍🥰🥰🎈🎈🖌🖌✏🖋🎨🎨🎨
Ha ha Jo you lovely shy person - I wish that you could do the latter too of course! And I wish I could have been the brashly confident type who, when younger, had played the game so they now I had any number of well paid artist opportunities to accept of turn down at the click of a finger!
But the reality is that we are going to be laying on an exhibition in about 2 weeks and hoping like mad that the only people who come are entirely untraveled and Covid19 free! Or else that no one comes and we get loads of lovely photos of it to share on our website and social networks.
So basically I hope that there’s lots of time left for you to become a crude cliched American and for me to become a brash Tracy Emin (I was at art school with her) or cool, svelte, glamorous art world loving type.
But meanwhile let’s just carry on trying not to want to charm doctors, try not to be defeated by autoimmunity and instead keep giving each other cyber hugs across the pond here and meeting through images on Instagram!! 🥰🤗🥰🤗😁🎈
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Hey, does anyone have any advice /experience re creams/meds to help with lupus sun rash :-(
What a time to be on steroids 😂
Now I’ve done it, rheum appointment tonight!
CBT for Erythromelalgia-Has it Helped you?
PIP Review Phone Assessment 
