Decreasing sunshine means more rash, worse brain fog and less sleep for me...I'm now into a few weeks of sleeplessness 🤪 😵...I was wondering if anyone had seen a pattern to insomnia? xxx 🧐
PS I know, I need to do something about the split ends 😂
Feeling like death warmed up (selfie from today a... - LUPUS UK
Feeling like death warmed up (selfie from today attached 🤥)...anyone find a flare causes insomnia? Happy All Hallows everyone!
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eekt
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Love your picture but can't answer your question. Have a good day and I hope you get some sleep.
Looking good, eekt, looking good....
I've had a million theories about regaining restorative sleep and I bet you've heard/tried them all. Some of my more outre experiments lately: currently trying to get direct exposure to natural light at some point in the morning, afternoon and evening. Owing to my house-boundedness, this is not a trivial matter, and my thinking is that these are necessary cues to keep one's circadian clock in sync. Related to this, I am considering getting blue-light filtering sunglasses to wear in the evenings (I already use that app that adjusts laptop screen displays). I also liked a recent report about how it's possible that insomnia is linked to shift in circadian body temperature cycles, and that taking a warm bath in the afternoon may help restore a more normal cycle.
Experience suggests that none of this will work. x
😂 I delight in your take on lived experience...I actually look worse than that 😱 because my nose is more kind of Daniella Westbrook ( no, I didn't know who she was until her agent was selling her to chat shows)...
I'll put together your electronic quad at your hoist party, so you can at least venture into daylight 😁🤗😘
Yes, I've tried most things, tonight it's going to be mitrazapine...a quarter dose turns me into a zombie...Treat or Tricks anyone ? xxx
wondered what you looked like 
I've started keeping an insomnia diary to see how much sleep i'm losing and also if there is a pattern. so far this week 5 nights losing about 3 hours each night. you say decreasing sunshine increases rash I thought most of us got it the other way round although I'm one of the lucky ones who can sit in the sun. I do tend to get a lot of excema [I can never spell it right] in winter across my face and random points everywhere else I've never connected it to lupus because of lack of sun but maybe it is lupus. I do think my insomnia increased since losing Gus though. too quiet at night
Bet you are right about Gus. I'm sure there's a big subconscious element in sound sleeping relating to how secure we are feeling in a very deep way x
Wish I looked that good!...the look on the pharmacist's assistant's face today was priceless, Hallowe'en come early 🤣
I seem to benefit from sunlight so far, but the very knowledgeable Melba1 pointed out that it can rapidly change. I'll try a sleep diary.
Yes, losing a soul mate is very detrimental to sleep 🐺🐺🐺 XOXOX
Ah, when we meet one day, you'll run into my arms 🤣🤣🤣...at least I won't need to wear a red jacket so you recognise me. 🤪
I'm weirdly not photosensitive...yet! Enjoying it while I can ☀️☀️☀️
Hoping your GP today could help out with the sleepnessless..I'm going to try Cas70's cannabis oil suggestion...let us know how the appt today went...
Did you record Gus at all? I have hound recordings, mostly howling along with fire engines and ambulances (complete with Doppler effect) - a wolf with three square meals a day and a feather bed - but some loving doginess too...sleep well xxx
Gus never made a peep, didn't whine or bark. only cried when left at the vets[ I would too} he just smiled a lot. may have been something in his past that stopped him making a noise
Then you'll be able to hear him smiling while you're getting off to sleep 😚 xxx
Well I’ve only very occasionally ever slept a night through without aid of a 7.5mg Zopiclone. I think this started due to eczema all over right through from when I was young to about 45 when Sjögren’s and related arthropathy and neuropathy both took over. Plus GI problems and now tremors/ shakes.
So I can only blame autoimmunity if I can say I’ve had it all my life. Which I think I have.
My late mum had insomnia too. Her solution was to listen to the world service. Consequently she was incredibly well informed and this seemed to keep her brain sharp and her many friends adored her. But I often wonder if the insomnia also contributed to her dying suddenly and a bit prematurely at 73. If so then rock on insomnia - I’d rather go out with a bang. X
eekt in reply to
Oh TT, sleeplessness makes every else so much harder...I feel for you...does the Zopiclone do the business? ☹️
The young locum I saw last week blanched when I said the insomnia was putting a strain on my heart (my gran tipped up at my age, and mum benefited from prompt intervention) but the meds she prescribed are just a holding measure, with about 4-5 hours sleep.
I'm going with Cas70's suggestion of cannabis oil, having been through all the sleep aids available in supermarkets, but at the end of the day, and as Rheumy told me, it's likely to be a 'Lanark' end for me ⚡️ 💥😚 xxx
in reply to eekt
Well I’m a few hours off being home now and I’m resolved to pursue my own route re sleep as I loathe Zopiclone.
Basically it means I have a foul, bitter taste all next day, meaning I eat more food just to try and rid of the rank taste and then have a night of even worse insomnia next night. So, although it ensures 6-7 hours sleep -the price is too high for it to be a viable option more than once in a blue moon. That said I have averaged one a week for the past 6 years😜 🤷🏼♀️
My nasal issues are not remotely on a par with the ones you so gamely send yourself up about. But Sjögren’s loves making a beeline for my nose. And so right now I’m sitting squashed up on a packed train with my seat stick holding up my arms, back pack under my cramped legs, dryness in every crevice and red shiny lumps all over my blocked and blood encrusted nose - which of course I daren’t blow!
So my annual family trip (and very possibly last by train) is all done and dusted now at least and I managed to get to the Frida Khalo show at V&A - people made way for me not wanting to catch whatever it was that had me puffing and snuffling and perching on my trusty prop at each pip stop to gaze at Frida related artifacts
It was good seeing this famous show - except that Frida was such a stunner and even her various body cases/ braces were made to look glamorous. I don’t think constant pain can really ever be glamorous - but maybe the difference is that, what with polio and being impaled by a bus rail, her suffering was very much a known, visible and believed quantity compared to autoimmunity and she clearly adored her doctors, particularly her surgeon - and he her.
I contemplated purchasing some conjoined black stick on eyebrows from the merchandising shop for trick or treating kids tonight. But frankly, after being cooped on this train for nearly 6 hours I’m hoping just to lock the doors and pitch back into my very own bed again and sublimely ignore Halloween. It has bad associations for us after decades of being “devilmented” the North Isles way! Xx
eekt in reply to
Hope you had some quality rest TT, a crowded train for the best part of a day is very taxing at the best of times, and just no fun at all when flaring. I had a four hour journey from Manchester on a standing-room-only train, and the woman who had reserved the seat next to me took one look said 'I'm not sitting there' and turned on her heel - to be fair, I had overdone the sightseeing meaning a sleepless night leaving me looking like a Spice victim - so I had space to curl up and doze 😁
Frida Khalo was remarkable - it was only reading a review of the show that I learnt how politically-motivated her work was, and of course the monobrow was a feminist statement in a class of its own!
'Feet, what do I need you for when I have wings to fly?' 🤗🤩😚 xxx
in reply to eekt
PS CBD oil - I have some THC free (isolate) resin and a Puffco vape waiting but thinking I should have gone for the oil now. Let us know how you go with it please!
Melbourne-Girl in reply to
Hi Twitchy it saddens me to hear about all of the people with insomnia as you feel so much better after a reasonable sleep. I have problems in that area also but probably not as bad as all of the people who have posted about it as at least in Australia we generally have longer days and more sunshine and that does help to improve how you feel.
Do you mind if I use your example for describing influenza A please as it is such abtypical picture of what happens? I will wait until my current flare up settles down before I do a post on it.
I sometimes feel that you eek and all of the supportive people on here are my other family
(Wrist, hands& fingers) to sore to write all of your names down,
Take care all of you
Suzee (M.G.)
🍀🍀🍀🍀
in reply to Melbourne-Girl
I feel same way about you all being my cyber family!
My son lived in Sydney and Melbourne for 2 years Suzee and, now back in Scotland he is definitely suffering from SAD (seasonal affective disorder) and would go back there at drop of a hat if we lived there. But, if visiting family in London by train is hard then travelling across the world would just kill me.
Yes fine to give my example of flu A. Xx
Melbourne-Girl in reply to
Twitchy is it O K to use your influenza A experience as an example please as it’s so typical of what you see with influenza A?
Xxx
🍀🍀 it would be so nice to meet some of my Cyber family sometimes as they have become an important part of my life. I have only been at Heathrow Airport so I would love to see England, Wales, Ireland & Scottland some day if health permits
eekt I really don’t know why you are on this site, you are looking gorgeous despite your lack of sleep 😂
Like you when my symptoms flare sleep is difficult & sometimes impossible. I certainly don’t look as good as you & I am having a severe flare right now 🙃
I hope you feel better soon. Is your Dr (not the one who is “Functional” able to give you something to help you to sleep when you have those flares.
Shame you can’t come to Australia as we are in our last month of Spring and will have as much sunshine as you can handle xx
Suzee (M.G.)
😂 Thanks Suzee, I've never felt so good as I did in Australia...the equal days and nights were so very soothing, and guaranteed sunshine ☀️☀️☀️...it's completely dark here at 5pm already....6 months to spring 🌷 🌷 🌷
A young locum prescribed some meds-lite, and I have 4-5 hours sleep on them...but since I go to bed around 9, that means another four or five hours before daybreak 🤣
Going try Cas70's suggestion of cannabis oil.
🤞🤞🤞 your flare subsides very soon, take care of it and back-foot the Wolf! 😚 xxx
Happy Halloween to you eekt & all of the wonderful people on this site. I hadn’t realised before that Halloween started in Ireland (I think). The UK anyway. I know there were many Irish people who migrated to USA so they must have taken that practice with them. It’s even reached Australia now!
I think Cas70’s suggestion of CBD oil from the Cannabis flower sounds good. Even though I have yet to try it I believe Cannabis has a lot of medicinal qualities, I know our beautiful singer Olivia Newton John swears it helps her as she battles another relapse of cancer. It has been very publicly shown in Australia in magazines which is why I am mentioning it here.
Keen to know how you get on with the oil
My best always xx
Suzee (M.G.).
🍀🍀🍀🍀
It goes back to All Souls Day celebrations, us heathen, contrary Celts and Picts - with some Calvinists thrown in - celebrated the night before by dressing in clothes back-to-front so the souls couldn't follow us home...💀
Huge celebrations in Mexico lasting from 31st to the 2nd! xxx
Wow when did the Mexicans come on board?
Wiki says the tradition goes back maybe 2,500–3,000 years ?!? Día de Muertos
Where did it start then ? Mexico xx
Eekt did it start in your country first. One half of my family goes back to the Celts. We date back to the black Irish which is why I use a four leaf clover for luck to the person or people I am writing to. Xx🍀🍀🍀🍀🍀
Thanks for the good luck! Maybe Halloween is the global merging of ancient pagan and christian rituals, like so many of the high days and holidays are ! xxx
For myself the anxiety of a flare brings on the insomnia .i have been writing so much down &comparing stuff .i am sure this is right .dont tell docs .they think I’m weird anyway.
Thanks Shorthouse, you could have nail the nail on the head! Some docs think anything that isn't worth a antibiotic or antidepressant is weird...maybe it's a 'this isn't my pay grade' kind of attitude. Keep writing it down and patterns will emerge! 👩🎓🕵️♀️👩💻
In the meantime, Cas70 suggested cannabis oil, so I'll be heading down to the local pharmacy tomorrow! Be well! xxx
Shorthouse we call those Drs “Functional “
Tongue in cheek of course. So many do not have a clue about what we go through on a daily basis and would not have a clue of tests and Radiology that may help us, as well as referrals to appropriate Specialists that will take the care & time to help treat us and do believe what we say,
Stay as well as you can
Suzee (M.G.). 🍀🍀🍀
Yes, I have Bought CBD oil (Cannabis flower) from Holland and Barrett - two drops under the tongue work wonders. Sleep well !
I didnt know what to expect when I saw your post....lol...happy halloween eekt xxx
Oh Lou, that sounds truly miserable, sleep makes so many other things easier to bear...Cas70 suggested cannabis oil, and there is a HUGE poster in the local pharmacist's window advertising (ah, one minute past closing time)...so I'm going to give it a go...will report back. Meds aren't doing anything for me...be well xxx
wish I could take something to sleep but I need to wake to empty my stoma bag.
Perhaps a half or quarter dose?...my GPs were bemused because a quarter of a sleeping pill used to give me another 3 hours' sleep if I woke in the night! Ah, those were the days! 😂 xxx
Suzannah do you have a Stoma Nurse as she/he should be able to help you work that one out so you don’t have to change the bag at night, it would relax & help your life at least in that area. I am sure the Queen’s mother had hers sorted so it didn’t go at night!
All the best xxx
Your Ozzie Wambat
🍀🍀🍀🍀🍀🍀🍀
dealing with stoma nurses for the past year has been the most stressful thing I have ever had to do. If I get an emergency such as rash around stoma and need something doing immediately it takes 4-6 weeks for an appointment. then they want to give me something I have already tried and found either doesn't work or causes more problems because they "have a list to work to" when I do get an appointment for whatever reason we come to an arrangement about changing a product only to find out a few weeks later when my next lot of supplies arrive that they haven't changed the prescription after all. more phone calls because I can never get through then more begging to change whatever I thought we had agreed to change and then sometimes it gets sorted. for my sanity I avoid them as much as possible. but I am going to mention it to my GP on Thursday.
Go suannah16, go! That is absolutely appalling...I've half a mind to drive up to be such a scary apparition by your side that your GP will be obliged to so something on the spot...more than half a mind 👹🤪 😛...not doing anything Thursday xxx
Gp i'm seeing is the best, if I ask for something he will give it. it's why he is so hard to get an appointment with as everyone wants to see him. just hope my flu has cleared up enough to ease my mushy brainfog
You'll have it all in writing, that's great you're seeing the best...hoping it's a quick good-bye to the flu xxx
I blame the flu jab last week, it's supposed to prevent me getting flu. is this the governments way of getting rid of sick people? kill them off with a flu jab?
It's the harsh reality of us autoimmuners, never knowing what way it's going to swing, sadly xxx
it's affected mum as well and she doesn't have autoimmune, she also had different jab because of age. whereas dad who always seems to be sneezing is fine
Could it be a flu strain that's not included in either jab? Willing you both well xxx
don't know. we both seem to have different symptoms. both of us are off our food but mum feels cold and I have a temperature.
Having a temperature can make you feel cold...just be on alert for any swift changes, take care, be well xxx
Suzannah I am sorry that you have had such bad experiences with your stoma Nurse, it should be the opposite (that person is in the wrong job as it would not be just you feeling like that). It’s disgusting that you can’t get the help that you need re your stoma. Is your GP easy to talk to? I really hope so, you may need to write down what has been happening as it is neglectful care. Write down what has happened before hand & next to each issue whilst at the appointment how it can be resolved after discussing this with your Dr. Ask your Dr how you can turn this into the positive experience as it should be. If you write it down it will help you by not only remembering everything that you have to discuss but referring to your notes can help you feel more organised and not so rushed as that is when you tend to forget to discuss important issues & feel overwhelmed. You can write down relevant answers at the time & cross off what you are happy that can be resolved (not so that you can’t read it for future reference). It can also be handy to date this appointment and what has been discussed in case you need it if you have not had the help that was promised & that you deserve.
Good luck on Thursday (these are important things that you should not have to worry about)!
Suzee xxx (wombat from OZ).
🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀
it's the whole team of stoma nurses, probably to do with being understaffed and constantly trying to reduce the amount of stoma extras such as adhesive removers and flange extenders being supplied because of costs, we get all stoma products free in UK because it's a long term condition but it doesn't necessarily follow you will be allowed to have all the products you say you need you have to prove you need them. It was hard at first because being new to it I didn't know what was available.
That is disgusting that you have to prove that you need them & adding more to your burden of stress. The stoma nurses should have print offs of what is available for what reason or potential problem. You probably need to ask your GP what you can do to stop this extra stress and be able to get the things you do obviously need.
Let us all kmow when you have your new dog and photo too of course!
Good luck Suzannah, hope appointment goes well for you,
My best always
Suzee (wombat)xxx
🍀🍀🍀🍀🍀🍀🍀
dog? do you know something I don't? If I find one I will let you know. with the stoma stuff despite us being allowed technically to have anything we feel will help us free of charge in reality it's probably about money and cutbacks.
Hi Suzannah I guess I was just hoping that your nice Dr you see may be able to help you despite the budget squeeze. He/she would have more power than the stoma Nurse to do this for you. It might be worth a try, although if you have already tried that the only other option is to let him know how much distress this is causing you & ask him/her is there a higher appeal he can make to get the equipment that you need & not have to wait so long to then find they send equipment that you have already used and is not working for you. If you have not tried it also let your Dr know you are trying to get advice so that your stoma is not active at night and adding to your inability to get even a few straight hours sleep.
I don’t know anything you don’t already know especially as the way your laws where you live are different to where I live. I just really feel for you and am suggesting things that may make it easier for you. It frustrates me that you have this added stress & made suggestions that you may not have tried yet. Good luck let me know if you managed to improve things for yourself in that area xx 🤔 🍀🍀
Yes, wouldn't it make the burden of lifelong illness so much lighter if the simple, practical stuff was done without the need for a push and a shove...how right you are Suzee! xxx
I think it does coincide with flares. I tend to sleep less well when I've pushed myself too hard, and it's an indication that I need to rein things in. Not that I don't wake up all the time normally anyway.
I've tried everything and nothing works for long. To get to the root of the issue, my functional doctor is giving me hormones (I need these anyway for the perimenopause). Some people swear by melatonin. I can't get this on prescription because I'm not old enough apparently (I have a very tight GP).
In the meantime a teaspoon of nutmeg in some sort of nut milk helps. And eating a snack.
Thanks Treetop33! I have that fever-ish half-sleep feeling if I've been on the go for about more than five hours through the day, so I'm learning to pace myself...I have a progesterone implant that has completely done away with the sleepless nights of 'flooding' and pain equivalent to giving birth...I see you can buy melatonin OTC, so I'll try it and the nut milk with a snack. Thanks for the tips! Here's hoping the hormones give some relief! xxx
Hi eekt I have always thought that hormones play a vital part in everything in our body and never more so than when you a peri menapausal, are menapausal or post menapausal. How long do the progesterone implants work for & do they put them under your skin in your arm?
Best always xxx
Suzee 🍀🍀🍀
If only more docs thought so, Suzee! It's the Mirena I have, and it's a IUD...good for five years or up to the menopause...I've had three years excellent service from it, but some have problems xxx
Thanks eekt your a legend xxx
More of a nightmare to my GP 😂xxx
I don’t think that would ever apply to the eekt I know from this site & your sense of humour is
wicked!! 😃 xx
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