What are you up to today if you have chronic illness?

[MewithME]

I do like the What are you doing today thread. But as someone with an energy limiting illness, I find myself marvelling at the level of activity that is beyond me.

Sometimes I feel sad about it even after accepting my illness for a few years now.

My week at work has been brutal and I'm feeling very weak and worn down. I am trying to find some inner peace.

This morning I managed a bath and ds helped when shopping arrived. I sat in the garden for a little while but newish neighbours were playing loud music which I found a bit stressful.

I've managed to put a wash on and made some lunch for us. I'm now in bed listening to some music festival in town floating on the breeze. There's sirens going off, so hope nothing bad has happened to anyone.

I'm going to lie down for a couple of hours. Hoping to watch a film with DS later. Pizza for dinner.

I found a nice new podcast called Shedunnit with lots of Agatha Christie in it which is up my street.

I may just lay here and listen to that for a while.

So if you have ME or LC or fibro or anything else that is a flipping funsucker of a thing to deal with, do share your little things. Our world is smaller but we are here.

I will add I know there are those worse off than I am, but not matter what we deal with, chronic illness is hard and it's hard to feel part of the world.

My issues began with Covid too ChampagneRose. That’s great you have got some feedback from your research project. I’m in one too but I’m not expecting to hear anything. In fact I was too exhausted to do most of what they needed like the sit/stand test. It would have set me back for days.

My issues began with flu a long time ago. A virus can definitely cause permanent changes to the immune and nervous systems. Even in the late 90s this was being said in context of m.e, but unfortunately those with vested interest in making it psychological took over.

I'm weird in that my M.E has always been with me but was properly triggered after a stressful time at work. Then later triggered further by covid. But weirdly I can't pinpoint it's origin or anything. My whole life I've had lower energy than everyone else, and frequent low lying throat issues. I'm convinced I have something else going on top but as of now I believe it's sub-clinical and not yet detectable on blood tests.

Struggling a bit in the heat here, and it is meant to get worse again this weekend. Better on Tuesday apparently.

Went to the hospital to participate in a. research thing today, had a blood sample taken. Won't tell me anything but might help others, so that's good.

Struggling today.
Hospital has cancelled 3 appointments. I was supposed to get a treatment plan for a new condition but there are no appointments as the only doctor is off sick.
I had to go and get a repeat blood test because the lab didn't process the last sample. No idea why.
It is too hot and I just can't manage to get anything done.
I had a scary experience recently when I woke up one morning and I couldn't move at all. It took me 30 minutes to gradually loosen each joint so I could roll onto my side, then get my feet on the floor.
I am finding it very hard to keep going tbh.

I'm sorry to hear that, it sounds scary. I hope you have a peaceful weekend and things improve.

I feel a bit similar. Certainly I haven't always had it but I had a number of years where I was often at the doctor's complaining of fatigue and having tests. I assumed it was low iron for a while. I always describe it as like a fruit machine and eventually I got my cherries lined up and boom... MEcfs.

My cherries were trauma, chronic stress, heartbreak and covid. But some of the comorbidities are there. I have loads of allergies. I have hyper mobility. I don't know if this means you are more likely to get it if you have these things. Covid was certainly the virus that kicked it off though.

I have travelled to see my mum as it is her birthday tomorrow. I'm feeling quite tired and symptomatic with a headache and slight sore throat and tinnitus is loud today. I've got the internal pins and needles feeling. But I have just booked a table for lunch as I feel we have to do something as I am here.

Hoping we won't be out too long and there's no loud music.

Although mum isn't too and at understanding the ME, I still think that kind of fatigue of sensory exhaustion is not one she gets and most people don't.

People think it's about physical exertion, but concentrating on hearing conversation in a loud environment plus the energy needed for eating is hard going. I don't especially enjoy going out for a meal now.

Long drive home tomorrow too so I'll be lying down when we get back.

Still, sometimes just have to swallow it.

Yes I know what you mean about everything lining up. Mine were
Hypermobility
Autism (probably burnout too)
Divorce from an abusive man
Moving country
Covid but more the end of the pandemic, when I had to get back out into the world and be around other people again. I was the most well I've ever been, ironically, during the lockdowns.
Then everything got 10x worse after an actual covid infection.
I sometimes feel my life is a checklist for autoimmune issues and burnout!

I'm waiting for a ME referral and my triggers have been shingles (on the face- trigeminal nerve) after other episodes of shingles on the back and side, that was triggered by emergency bowel surgery and sepsis, have also got PTSD and I wonder if that links it to it, along with depression.

I thought it might have been post viral fatigue but it seems to have continued, I'm not actually sleeping as much as I was after the shingles and thankfully the recurrent episodes seem to have stopped (for now) I didn't realise it could come back like that.

GP has done some blood tests before the referral and they seem ok, I do have antibodies also for Epstein Barr but apparently that is very common, she did ask about covid also which I think we had right at the start of the pandemic before the testing came out ( we got caught in the people returning from ski holidays from Italy and France and probably spreading it to the UK) however DH was much iller than me (he is on immunosuppressants and was coughing up blood I remember, but thankfully recovered on his own with the help of the GP.

Last few weeks I have had my dad's funeral, which was in a different country and that has really set me back with the travelling and emotional relatives etc.

And now the heatwaves, a PIP review and all the news about disability cuts is a bit overwhelming as well.

Know what you mean about energy and people, eating out etc, it can take time to recover afterwards.

I think it’s very hard to explain the whole sensory thing. I’m not sure I would have understood it if someone had tried to explain it to me before I got ill. I think there should be a sound rating for restaurants as so many are now too loud!

We made it to Wales - lovely as there’s no heatwave here (it was raining when we arrived!). I can’t drive anymore because of my ability to fall asleep at the drop of a hat so poor Dp had to drive the whole way and the traffic was terrible so it took 7 hours.

@Orangesandlemons77have you tried Valacyclovir? Covid triggered a repeated HSV infection in me and taking Valacyclovir really helps. They now know that Covid did trigger a lot of herpes viruses to reappear and become chronic like shingles and HSV.

I talked to my GP about taking that long term, and he said if it comes back one more time we could.

Does anyone else really struggle with the heat?
I went out to walk the dog late afternoon, felt ok as had been in an air conditioned car. It had cooled enough to walk the dog, I walked him in the shade, but my legs still became weak so quickly. I'd left the house without my stick and felt quite nervous walking home. I guess with hindsight I should have sat down somewhere and asked DH to send one of the children with my stick!

Anyway I guess I am just getting nervous about the predicted heatwave. And feeling grumpy as I would like to look forward to the summer not panic about it.

Well i done half hour in the garden and im thinking i shouldnt of

But it is the front garden and it was abit of a mess and embarrassing with the neighbours

The sun was behind me and it was 5.30 so thought it was ok

Got back in and felt rather unwell
Drank a pint of water & a glass of milk and sitting in from of a industrial fan and only just feeling better after an hour

Its still 28’ now
Lesson learnt

Covid turned the dial up on my condition (Myasthenia), first in an acute way (a bad covid infection left me unable to swallow, open my eyes or hold my head up) and then in a chronic way (it's generally more severe than it was beforehand). So although I don't have long COVID it has had a similar impact on me, and I am not sure that story is told anywhere in the statistics.

Feeling rubbish. Lack of sleep (couldn’t then woke up early) and hot weather. Will do a gentle yago wind down tonight and try and be off before 10.

Best wishes to everyone.

Love the fruit machine analogy!

My cherries were an empty nest (having had 20 years of caring responsibilities), loss of job and general deteriorating health. I had a feeling that my life was over even though i had lots to do.

I'm slowly improving, bringing the joy back into my life by noticing tiny beautiful things.

Today I'm going to do a little tidying in the garden.

And go to the garden centre and buy a bag of compost. Hope there's someone strong there who can put it in my car.

And that will be plenty for today. I made a large spanish omelette for tea last night, so will be having that cold with salad tonight.

Didn't get much sleep and up at 7 with the dogs. Washing up, quick tidy and a cuppa then headed back to bed. MIL then decided to get up early and wonder around. Got her toileted and back to sleep. Am back in bed now but wound up and stressed. Loads to do in the house with tidying, decluttering and cleaning but no energy and so difficult with MIL needing supervision when she's up. Today I absolutely have to pack up my clothes returns to post back tomorrow. Shower later and office day tomorrow.

I really overdid cleaning my flat recently to try and get rid of tiny flies. It worked but I've had bad migraines for the last few days. Finally better but exhausted. I'm.laying outside in half sun half shade.

Thinking of everyone

Ate junk food for the first time in ages. Feel rubbish. Need better sleep.

I really notice the difference when I eat badly. It makes me so ill. I wish junk food didn't taste so good.

It makes a huge difference. What I ate didn’t even really taste good. Just so tired and grabbed something stupid. Now feeling worse.