The weekend just gone was one of new heights for me, albeit now a regret..
I hadn't socialised in person for years, maybe four or five, long before COVID was a thing. But after finishing my work in emergency I went to a leaving party. After a month on my anti epileptics I felt like they were more under control then they had been in the last year and was tired of waiting for my flare and maintenance meds to be prescribed as it had been over a month and still waiting.
Well a good evening,had spent the day in bed, so I had some energy for the evening. No drinking or smoking, I ain't that wild. No seizures there and then. But I should've known better. the lights and sounds took there affect slowly, my seizures having a pre aura of mania, which makes me feel so high for a short while,but then into seizure after seizure. Plus, my GP ran out of my antiepileptics and thus I had two days without them even with ordering weeks in advance and begging for an outpatient prescription to use at another pharmacy.
still waiting for my meds for lupus and for some proper sleep. And for my head to go back to normal haha. 😳 It just seems impossible with lupus to do anything and the one time I break from the code it goes awry. I know I can't pretend to be normal. But it'd be nice to have my medication and just get some help in that regard. Plus I'm back being COVID positive again?? On lft. And all in my first week of my new job.
promise you it's my rant over. but if I get called anxious or a hypochondriac or a drug seeker anymore I may loose it with all my clinicians.
lottie xx
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LottieLou96
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👋👋👋👋 GLAD you’re keeping us in the loop, thanks lottie…it’s dreadful they haven’t got your meds supply right…can only make this instability more risky…of course you’ve gotta try to have a bit of social life & clearly you’re v experienced at pacing this, but without the right meds at hand you’re much more vulnerable…especially while you’re testing LFT pos: have any medics mentioned chronic COVID? This is being diagnosed in Primary Immunodeficiency Patients (the big studies are concluding the COVID Vaccs barely help us at all - hence we’re fast-tracked to antivirals)…kinda like chronic shingles, which Immunology thinks i have… you’re on my mind all the time
You're in my mind too💖 wish I shared your get up and go at times! I am meant to be working with neonates this week, having COVID negative last weekend but back testing positive and do we need if I managed to pick up a different variant on my singular night out lol.
Meds are a nightmare. They don't seem to understand simple guidance, give me medication and take my blood every other week lol. 🤣 I must've tried twenty times by now. Even as recent as ten minutes ago. They changed their minds and I have to get it done at ' the Hub" instead. And they want it every week for 18 weeks to take my bloods. But what is the point in taking my blood if they don't also prescribe the medication lol. Surely it's not that complicated to understand.
Slightly off my rocker still from my missed epilepsy doses and I guess the longer they don't treat the lupus the more it damages my noggin. But apparently this is too complicated for them!
And the prednisolone and azathioprine seem off the table, but they are just going to stab me 18 times over 18 weeks. They ain't getting the logic with this.
I absolutely love the GP trainees I worked with in emergency, albeit they hated working in ED. But, it makes you feel a bit sunken, if they're gonna end up like the GPs in the practices. I know some are good, but some just think your mental. Like they wrote me off as mental years ago haha.
As the recent studies suggest, MH and chronic disease.go hand in hand for many a reasons. Functional MRIs often show the changes in vasculature and parts of the brain over time due to illness or chronic disease. You have to look into and be ready to always keep open minded to rule out 'organic' causes before you say this is mental health and also think how can people be helped. And MH as a whole, people are failed daily. I had to see last week someone return time and again, admission to ED after admission, and still be deemed to have capacity to kill themselves and was told off for going after the lass and trying to get her not to harm herself. MH has stigma, chronic illness has a stigma, that they are essentially made up. When in reality they aren't the easiest to heal, they take time, and balance, and contingency and reviews. All whilst they tell you it's hysteria.
Idk 🤔 it's like a game atm to see how long they can be a pain, refuse me treatment until I fully hit the bucket. I'm a persistent ignorance in their eyes. Watch me become an even bigger ignorance when I walk to my consultants office at work and get sassy. I'm close. I've been asking any and every doctor to write the prescription I need according to rheumi lol. No luck yet...
A deeply dreadful game🤦🏼♀️….again: thanks for every detail: many here will be reading & relating to your ordeal + helped by the way you analyse all this 👍…it is very complex & your grasp is phenomenal
Thanks, but 😆, my get up & go got up & left many moons ago…no surprise after d3cades of infant onset immune dysfunction + CTD going inadequately medicated until my late 50s…folk say my seeming bouncy 🤡ish-ness is a sorta smoke & mirrors thing…as much to keep my spirits up, as anything….I’m sorta my own Stand Up comedian 🤷🏼♀️…
Good morning LL. I have to remark how incredible it is for me to read this post with your humor and stamina intact. Perhaps hold on to some of that energy for your healing. 😍 I just am 2 days past taking antivirals which made me stomach sick. Past that now, I’m have terrible night sweats. Simply can get no sleep. I’m exhausted beyond measure. Keeping myself hydrated and trying to eat though have lost 4 pounds now and I think this is day 10. I’ve read some people take antiviral for 2nd round. I can not. Am going to call my GP today, and neurologist. The virus is affecting my Erythromyalgia so badly I’m hoping he will increase my dose of clonazapam which helps with burning hot limbs, face etc and usually helps me to sleep. If anyone has advice; I would be open. Titters
Well I swear by onions morning, lunch, evening for any respiratory illness and plus COVID or anything that plucks the last remaining fatigue, I have been fighting off with Monster or Red bull, sugar free, but I needed a nuclear caffeine hit haha.
My first week I've made a mess of not going in, first week into a new job but ah well. We can't help it. I do hope the COVID and the erytho... eases up, it's like you never know if your coming or going. For that, I generally have one sock on and one sock off and so on. I look like a toddler dressed me but ah well. Sip my hot and cold drinks together haha
Any med with a ...Pam ending I would do well in having, makes it that bit easier. I hope you get some sleep and feel a bit more you xx
Ah, LL, I hear you! It makes no sense at all. Taking blood that often, you can only hope they will actually be reading and monitoring the results so the appropriate actions are actually taken. So far, their record is what my grandmother would call “pisspoor” and they will create another problem, anemia. They probably won’t manage that well either, or will treat it half-arsed and throw so ferrous sulphate at it (usually ineffective) AND you still won’t get your meds.
They (being the collective/system that so often works against those of us with chronic/rare illness/pain) seem to think in dichotomy- black and white, 1s and 0s. If you don’t fit, they very quietly relegate is to the box of broken toys. Well, it’s time for an uprising!! Someday they will be a broken toy too!
All this to say, I understand, my friend. It is truly maddening. Don’t waste your precious energy. Be strategic in your efforts. Most are just bureaucrats, find the one with the power. All my best always! With you in solidarity 😘✨💐🦄🦓
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