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.

Working from home but car service at lunchtime. Work is busiest time of year so will be flat out. I am dreaming of 5pm and lying on the sofa with some Netflix. If I'm really exhausted I will be dreaming of bed by 7pm.

Ds is with his father this weekend so I Will be aggressively resting! There's always next month for housework 🫣😂

It's DH birthday and we've just got an allotment so going down to start work Inn it. Probably involve me day Inn shade half heatedly pulling up weeds whilst DH does serious work on it. Pub lunch then home and off into town for tea with the teens (currently doing GCSEs and A levels). I'll really be struggling by tea time but will try and go for DH (and hopefully go so we're home by 8). I've got nothing to do tomorrow and DH and DS are out most of the day at Wembley so won't feel bad just resting all day.

How do you start the conversations to manage others expectations of you? I find it so hard (not helped by the fact that DH loves going out but doesn't have many friends, whereas once I've done a day's work I'm good for no one)?

I’ve woken up feeling quite refreshed and thanks to new meds my pain isn’t too bad. So my son is going to drop my grandson over later so we can play board games ( he’s teaching me how to play chess).

DH warned me on his way to work to not wear myself out. Because if I’m having a good day I try and cram as much as possible in, then I’m done in the following day. I never learn

I have psoriatic arthritis which is a type of inflammatory arthritis which some people with the skin condition psoriasis get. I'm mid-flare up in my arm/shoulder which is radiating into my back/neck and is very painful. It's been here nearly a week so hopefully it'll go soon as these things happen in random joints, but are transient.
I'm not working today as it's too sore so I'm staying either in bed or when I can manage it I'll swap to the lounge as the sofa is ok to lay on top and watch tv. That's about it for today as I just need to rest it.

Long time, diagnosed at 20, old gal now 😊 and very lucky with it for many years..

It does sound as though you're managing it well, one thing I've learnt tho' is not to overdo things and also get plenty of exercise. Been swimming 🏊‍♀️ for years and found it so beneficial! good luck 👍🌷

Bedtime ended up being well after 4am thanks to the danger nap and that’s me just awake now. Today I have to go shopping again as I went without a list and forgot a bunch of stuff (thankfully it’s all light things, the cake making stuff yesterday was so heavy).

Then I have two cakes to make, planning one carrot cake and one Victoria sponge.

Then I have a massage this evening. It’s one thing that really helps me with my pain levels, it’s been ages since I had one so it’s probably going to be excruciating at the time but it’ll be worth it for me in the long run.

I was only diagnosed a few years ago, but I can see that I had it since I was 20. I was put on steroids at diagnosis which made me very unwell (I could barely move) and then mycophenolate which did the same but slowly. I'm now just relying on pyridostigmine and pacing. I finally felt well enough (post mycophenolate) to swim for the first time last weekend and it felt amazing. But I over did it and had to rest for the remainder of the weekend

It's a fine line sometimes between getting enough exercise and over - doing but you may get stronger if you keep swimming regularly..I take pyrido aswell. Don't know where you're based but the hospital I go for annual checkups says every myasthenic is different! weird disease in a way..atb

As well as my fibromyalgia I also have SVT. I’ve had it since I was a kid but it wasn’t diagnosed until I was around 18. Attacks were so rare that when beta blockers stopped helping me I just went off them. Then when attacks started happening more often my GP put me onto a calcium channel blocker. Which did the trick for quite a few years. Then in December I had two really bad attacks and just after the new year I had some strange new effects from it that resulted in me through in A&E to make sure I wasn’t having a heart attack.

Thanks to the advice from the lovely doctor in A&E I’ve pushed to speak to cardiology again and today I received a letter for my first appointment with them. My GP sorted out tests for me while I was waiting on my appointment so I should have bloods, blood pressure and ECG all on file to get a head start. Appointment is on the 10th so fingers crossed we can find something that’ll work again. Ultimately I’m hoping I can have an ablation in the hope it’ll stop the attacks permanently but just need to see what they say.

Has anyone here got MCAS?

I do but thankfully haven't had a big flare for years. Is yours bad?

Sadly yes, after prolonged stress it worsened and now I get flares around twice a month. I feel really ill during them. Currently on a low histamine diet which helps.

I suspect I have MCAS. My ME dr has put me on a mast cell stabiliser which has reduced my fatigue significantly. I don't really have severe allergy symptoms besides dermatographia, Itching, and the fatigue though.

What's it called? Is it cromolyn? I'm desperate to be prescribed that.

No, it's montelukast. Not sure what the difference is. I never thought anything like that would help, just goes to show what a weird and complex disease this is

Interesting. I didn't realise thats how montelukast works... It's worked brilliantly for my son's asthma, like a miracle cure.
My daughter had a really bad reaction to it though, it made her really depressed really rapidly

Yes, I love swimming and need to get back to it regularly for my mental and physical health. Just need to be disciplined and just swim a tiny amount to begin with!

I'm always here if you need a bit of encouragement or bit of advice 👍👍 we're in an exclusive club😄🤣

@MewithME thanks for reply! No I don't have ME/CFS, I have long covid and severe IBS along with several mental health conditions. Unfortunately I only have the one supermarket near me (Asda) and my son has coeliacs disease so we're a GF household and each supermarkets GF selection varies wildly so it's hard to shop in other places we're not familiar with 😞
Reading for me is one of the best relaxations but I can see how for CFS sufferers it wouldn't be as requires too much focus!

I was asked to do the coffee after church tomorrow so I have 3 cakes to bake. Simple chocolate cakes nothing fancy. Shopping done yesterday.

I am in bed again. Went up for my morning medication and to say good morning to my daughter and husband. Will spend another hour in bed listening to an audio book before thinking of getting dressed.

I hope everyone will have a good Saturday!

Morning. As expected I am wrecked after yesterday so getting my nails done (place is round the corner) then resting.

DH and DS will be at the cup final, I am banned from watching as I've not watched any game so far. Still high stress though, it would mean the world for them to win for both people I know and the (much maligned) local area.

Funnily I find reading v tiring but have eye issues from EDS, they don’t work well together so it’s not just an ME/CFS thing

What a lovely idea for a thread OP.
I have chronic fatigue from a head injury and now the fatigue is even worse than my ‘usual’ from cancer radiotherapy and induced menopause.

The big negative is that I am very sedentary so I am getting the long term health issues from that now- higher blood pressure, osteoporosis, muscle wasting. I miss exercise as all I can do now is short bursts of walking.

The small positive is that it has forced me to slow down and smell the roses without guilt. I used to be a workaholic. I also have ADHD and used to never ever sit still for more than a minute. I couldn’t even watch a film straight through.
Now I know how to meditate. Now I will read an entire chapter of a book in one sitting. Now I can have a conversation without thinking of all the things that need to be done and jumping up to start on them.

@Phunkychicken I am so out of touch with football. Hope your team wins!

Eds is one of the venn diagram things with MEcfs. I was baffled by the overlaps when I was diagnosed. I was always told I was 'double jointed ' which is hyper mobility in modern language. I also have loads of allergies and get hives often so I've wondered if I have MCAS before too, which is another one.

I thought my decline in eyesight was just age but I've heard it mentioned that can relate to MEcfs too.

Mmmmm cake. Bet your house smells amazing. The audiobook sounds good.

My current one is just a mess. I have fallen asleep in every chapter so far and i have no idea what's going on. It's like someone's torn the pages out a book and jumbled them up and that's the order I'm reading in 😂

Morning everyone! Just caught up on thread. Have a very quiet day today after sickness and some busy days (busy for me!).

Just wanted to add my voice to those saying that rest for me involves lying down with eye mask and listening to an easy audiobook. Currently listening to The Hobbit.

I find i need to have some noise as a distraction so that my brain can settle. If I'm really exhausted, only music helps.