Does anyone choose to live like this instead of hiding away from the light and conserving energy?
New lifestyle. Use up all your energy having a gr... - LUPUS UK
New lifestyle. Use up all your energy having a great day, do nothing for a couple of days, then repeat
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IsleofWight1
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I try not too.I prefer to be on a even keel as much as possible so i find pacing it out work better for me as you dont always get back all the spoons youve spent X
Edit. Youve also got to think of tomorrow because life also doesn't flow that way. How many times does something unexpected crop up you have deal with. Having extra things to deal with is hard enough for us without having to do it spoonless. X
Yes, totally. At the moment I have the awful cold virus that is doing the rounds and playing havoc with my lungs, so there's not a great deal of anything going on. I find that my designated shower and hair wash day, usually sends me back to bed anyway!! 🛌
I think it is not a realistic way to look at this disease unless you are okay with more systemic inflammatory conditions. MM
Yes that's exactly how my life is. I'd rather pace every day but my days out tend to be with children/grandchildren, so usually very busy. I want to get in the garden but as soon as I'm out there I'm exhausted. It's shower/ hair day today so that'll wipe me out. Must think more positively, I really do try but sometimes................ well it's impossible. Hugs to all ❤️
Everyone is a bit different.I'm still discovering what helps and what does not.
First of all trying to discover what is flare and then what the triggers are is hard.
There are ways of finding compromise.
Protecting outselves from the sun helps us protect our kidneys where the immune complex builds up. This and other organ damage can happen without us being aware of it.
So feeling unwell can be a blessing as it makes us adapt what we do.
Of course, we all have to find our own way to deal with our lot and to fit our lives around it. Like you I’m still discovering this condition and its effects.
From a brain injury 6 years ago I have brain frog ( oops mistyped but I actually like it!) and slower mental processing, also it’s changed my personality a bit. I’m more reactive too quickly eg jumping in about my eyes and now UV. Im realising that I’m at a time of change with UCTD/lupus . Actually, is it always changing or does it settle down?
I get so much help and information from this forum. There is more practical advice on here than anywhere else. This comes from everyone’s personal experience which is an invaluable resource and support and luckily it’s a kind ,caring considerate group of people.
Thank you
Sharing my fuller story in case you relate to any of it. There is much to unearth and mechanisms and things that cause changes are not always fully understood but we might see patterns.
I had a head injury in the car 9 years ago. Hit my head three times in succession, on going over speed bump, back seat, three sitting there and I was wedged to right.
After that I started to get autonomic dysfunction POTS. It was also a time of stress at work.
2019 my knees hurt and swelled and I got fevers and glands in neck sore. My dad was dying of NHL. He died in Januay 2020, we were very close, then in mid March 2020 I caught covid walking past a runner who was not able to run because they could not breathe. They must have gone out not knowing they were ill, and must have walked through expired air.
It was a main road and I could not get out the way because of traffic. This was all before lockdown when we were being told to wash our hands.
My Long Covid seemed different to others, kidney and eye issues, photosensitivity seemed to worsen the autonomic dysfunction.
The above things all I think might have contributed. I turned to the internet and through Lupus Foundation of America videos, discovered the American Rheumatologist Dr Donald Thomas and got a second hand copy of his book called,
The Lupus Encycleopedia.
lupusencyclopedia.com/about...
Just before my GP had referred to local NHS rheumatologist who had said all my symptoms were in my head.
Only positive blood was the strong ANA.
My GP had all along been concerned and supported me through a second opinion.
I went private, with no insurance, because I did not want the same to happen again. I knew by now I needed hydroxychloroquine to stop symptoms and prevent organ damage.
I did this post:
I dont know about the sun and the link to the kidneys and I can’t find an easily readable link on Google. Can you recommend an easy read/explanation please.
I think it was from watching a Lupus Foundation of America clip,
healthunlocked.com/lupusuk/...
or from Dr Thomas information. lupusencyclopedia.com/about...
It was a while ago so not sure exactly.
I was starting to get some kidney symptoms so read up about it.
Just found something.
Easier descriptions were given in resources mentioned earlier and doctors can give.
Mechanisms of kidney inflammation and injury in Lupus Photosensitivity
Joining Lupus UK I found good. There is a pack you get.
Also there is free publicity material that you can give to others, like "Someone you know might have Lupus".
Hi IofW 😃 Just listened to this World Lupus Day 10 May 2024 video and 34 minites in there is a discussion of what goes on in the skin when uv light hits it.
It mentions how the kidneys get affected due to immune response
youtu.be/w2qTwA7sTvY?si=7Ij...
Hi SC. Looks interesting. I’ll listen soon.
I’m sorry to hear that you’ve had such a challenging and sad time in the past 10 years. I’m impressed by the way you seem to handle your health - head on, no messing!I’m in awe of your research ability and I thank you for passing on the information and the links.
It seems we have a lot in common but you are well ahead of me, I’m still trying to learn and cope with all these changes. Your replies help a lot .
Thank you for your time and effort in replying to my posts.
I love your pictures. We do have a lot in common.I joined HF Holidays decades ago, because I loved week long walking holidays.
Yesterday evening went swimming, the day before new swimmers at lunchtime, got cross when I changed lanes to get out of the sun, coming through big window in the roof. They did not understand..😪
I thought I was tough but this is making me very tough.
I love honesty too and getting to the point.
Found hospital appointments often end up with me telling doctors what I think of pathways and criteria that are not suitable for lupies. I say that it is important to whistle blow, when things don't work.
I'm a quiet person, so it has been difficult.
HF holidays….did you come to their hotel on the Isle of Wight?
Shame about people ruining your enjoyment of swimming. You’ve got to be tough, as you said. And I think you know more than my rheumatologist does!
The video was interesting and informative, thank you. I’ll check out your YouTube recommendation s too.
i guess it depends on what you want to do. Im now retired so probably a bit easier than someone who works, i tend to look at the week ahead to get an idea of anything happening thats likely to take a lot of energy and then work around it. general pacing yourself would be the ‘new’ way, otherwise as you discovered it can leave you drained.
I try to keep on an even keel and not plan too many things on any one day. I’m also retired so it is much easier for me. I presume you’ve read ‘spoon theory’.
My motto is ‘let whatever you’ve done in a day be enough’
Boom and bust is not good for our bodies. We don't know how much damage we could be doing internally with that strategy. If I have my car and I'm out all day I've got a pillow and blanket and magnetic car curtains and ill sleep in the car for an hour and then continue on in the afternoon. Going out all day is difficult to do when I have no car. If I don't rest in the day I get so dizzy and tired I have to go home anyway. Try half day activity and then rest, your body will thank you!
love the idea of magnetic car curtains 😁
Me too 👍
I love your stop the car and snooze idea. I’m going to try it out! MM
I've done it for 15 years and it works for me. Not the most comfortable but if you're really tired its better than a floor or sitting on a public loo for a nap (I have done both) not great but needs must.
What a great idea!
I had to stop driving recently but I’ll give it a try on the back seat of a double decker😊
They are great, shelter from the sun and you can put them up in a second and take them down just as quick. Us loopies have to be prepared.
I feel like I'm running on minus energy at this point. I have OCD, so trying to keep on top of housework as best I can. Most of the time I don't have enough energy, but I keep going anyway... Starting to worry where I'll end up as I feel dreadful lately.
Even though I do stuff, I still feel like I'm behind.
That doesn’t sound good. Does OCD need to be addressed before anything else? You are putting a lot of stress on yourself, but you probably don’t need me to tell you that 🙁
No, I know it's not great, but I'm kind of stuck between a rock and a hard place. I also have depression & an eating disorder, so find things usually lean towards one to cope with the other two. It does feel like I'm constantly off balance, but I've been through almost all the treatment option so stuck at a bit of a dead end. Just hoping the treatment for the physical symptoms starts to work, then at least that's one thing improved in the equation!
Try allocating a task or tasks for a day . If they get done great rest up .if not don't beat yourself up about it. You will find ways to make things alot easier for yourself in fact if you do a post I'm sure you will get lots of suggestions xxx
I try not to, but every so often needs must, like I'm at an art fair for 2 or 3 days! Great fun, but I plan in rest days after. If I have a bug, extra rest always needed.
I have to because my family don’t let me hideaway I tend to be busy and go out from about 9.30 come back have lunch then go for an afternoon nap so I can cook tea then when I crash I just have a day doing nothing much but still expected to cook the meals! Oh well guess I’m the better cook lol
Aw, that’s hard. Start teaching your kids to make a meal as soon as they are old enough.
Thanks My kids are both married lol it’s my hubby and the Grandkids that’s the problem!
I try to keep fairly level energy but sometimes it just can’t be achieved if you have something ‘on’. I’m paying today for overdoing it yesterday. It is what it is.
Oh Yes! Music to my ears. I've never got to that 'acceptance' place with Lupus and I'm not sure I ever will, even after 11 years post diagnosis.For me, life isn't a 'dress rehearsal' and so I do whatever (obviously with the inevitable old wifie limitations) I want and strap on my big girl pants, boldly awaiting the repercussions.
One good day will always top the many multiple bad ones!
Another early riser, or a late go to bedder?
Love your reply, we seem to be in a minority ☺️
The latter 😁👍
