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.

We hired a motor boat on the river Arun and had the most lovely couple of hours. The children took it in turns to drive which they loved, and the scenery was just beautiful.

Then, after a nap, I went for a little swim with my daughter. Just 20 minutes but although it was fun I now have quite bad symptoms. So annoying!

However, this is substantially better than two years ago when I could barely get out of bed at all. And feels amazing to feel well enough to decide to go swimming two weeks in a row, even if couldn't do much and felt bad after

All the cake I baked yesterday was eaten at church today. 120 people at the service today.
We - always two coffee volunteers on duty - had a nice time arranging coffee and tea.
We probably chatted more in the kitchen than we actually participated in the service. I sat the sermon which was better than usual and rounded communion.

After service we had a meeting about the autumn church fete. I'm going to regret participating in that committee but it's so fun. I did so much of that kind of work before I got sick.

Our daughter was invited to a classical concert by her music teacher at 5 pm so we went for a visit at a local museum after church which have annual passes to.
If we had gone home and I had joined the sofa I would never have left again. Daughter had an ice cream and parents had a cup of coffee at the museum's refreshments. Nice.

The concert was really good and cheerful. Flute, piano and a choir singing!

Home and of to bed to bed with me. My husband helped child sort out her clothes for tomorrow, get sandwiches to eat and into bed.

A nice day out but exhausting.
I will pay dearly for it tomorrow but that's unfortunately life.

One of the joys of having a chronic illness and being mainly housebound, is that the very few outing I do go on tend to be medical appointments 😂
So, today I have been enjoying a gastroscopy, just a regular follow up one to check on a long term issue. All went well though, and I’m now home in the garden, enjoying the sun. Husband will do food for the day and has apparently bought ice cream in case I have a sore throat after the procedure. I may certainly find that my throat is a little sore, so that I can take advantage of the treat!

Oh, that doesn't sound pleasant, glad you can relax now.

I had a trip to the pharmacy to pick up a stack of medicines and it was full of complaining people so I am glad to get back from that too.

Sometimes we have to overdo it and pay the price later I think, just for our mental health

I couldn't work out why I woke up this morning feeling so horribly weak. Someone rang the door to collect some dance shoes I was giving away, and I could barely make my legs room to get downstairs

A few hours later the penny dropped when my period started.

Does anyone else get flares that tie in with their period ? Sometimes it feels like a cruel joke! On the other hand I guess I feel a bit more like nesting then anyway. Just feel like my body is attacking me from every angle

I got my eyebrows waxed and tinted today but other than that it was a day at home for me thank god because I feel rotten today and haven't had a decent night's sleep in weeks, sometimes don't even know why I bother trying to sleep.

I always suffered with absolutely dreadful exhaustion with PMT way before I got MEcfs.

I'm now waiting to see if I've gone through menopause... Six months plus and nothing. But lately my body is doing 'something'. Had slightly sore boobs, and feeling extremely emotional and crippling tiredness but think it's hormonal tiredness not PEM.

When it's hormonal, it's more like nodding off, feeling spaced out, can't stay awake for me. PEM /fatigue can make me need to sleep but it's not quite the same.

I think we're like Eskimos with all their words for snow. We're like tiredness experts! 🙈

@CassandraWebb I’m post menopause now, but when I was younger I had terrible worsening of my ME symptoms just before and during my periods. Tried explaining to GP, but of course was just looked at as though I was talking gibberish.

Oh how frustrating! And it's not trivial either because it really affects how we function for a chunk of each month

Thankfully my neurologists know that Myasthenia often flares when women get their period so they have been able to give me tips (eg. I can increase my nerve stimulant medication) but it does suck!

My mum is a diabetes specialist and says women often struggle more with diabetes when on their period too. So there seems to be some kind of auto-immune link.

I’m post menopausal and, apart from the RA, all my current health issues are post menopausal gifts from the gods of Olympus!! I’ve had a “lovely” 3 nights of absolute insomnia with barely 2 hours sleep. Heat doesn’t help me but the weather seems cooler this morning so maybe it will improve things.

School sports day yesterday and, although I was only sitting in a chair on the field, it was being sociable and interacting with other parents so I’m shattered and everything aches. Also not helped by knocking over a new bottle of oromorph and losing about 1/3 of it (they have to give us big 300ml bottles don’t they!!) so now I’m going to have to order a new one sooner than I would have done - keep it for when I absolutely need it but finding that those days are increasing!! Picking up new strength pin patches later so hoping it will all help!!

Yes I'm much worse the day before and day of onset.

I had acupuncture yesterday which often helps with the mcas symptoms and migraines

Today I'm aching all over, sneezing with the mcas, ibs and just dreadful.

Luckily the weather is wet today so I feel justified in staying in bed with my cat

Oh my, is sneezing MCAS . . . (penny drops). I had a busy day in the office, about to get period and have felt fluey (exhaustion not infectious ill) with really bad stomach flare and many sneezing fits. I have EDS POTS and had MCAS when younger so perhaps this is the form it takes now.

It is for me. I get episodes - currently around twice a month- of severe sneezing along with swollen eyes, flueyness, ibs and other delights, but sneezing and excessive mucus is the worst. I literally look and feel like I have a severe cold twice a month. My m.e is very immune based anyway (started with flu many years sgo) so who knows which is what. The sneezing worsened after a bereavement and inquest, so stress makes it worse. My histamine bucket is always too high but a low histamine diet can really help. Tomatoes will guarantee I feel awful thr following day.

Yes I know histamine is an issue for me migraine wise. Think it's time I kept a symptom and food diary

Yes migraines are linked to histamine for sure. I have chronic migraines.

Hospital 14 hour wait . No treatment go to GP. GP this morning no go to A &E.

Sounds awful, hope you are OK.

I had a PIP video assessment which went on for hours, now resting and recovering from the ordeal.

Oh goodness! That's awful!

My hip keeps giving way, when I transfer, 111 said call an ambulance, sod that! GP is doing a home visit tomorrow, at which point I may revise the decision. It hurts like hell!

Sorry to hear that, sounds painful hope you can get some help with it tomorrow

Typical.

I have woken up to a massive stomach flare up so currently mainlining the immodium. DS takes montelukast got various immune/allergy issues so I've just taken one to see if it helps. V snuffy and congested too.

If it helps I guess that's my answer.

Hope everyone else is doing better and @Gilead your hip behaves. It's really annoying/scary when you can't trust your body for the most taken for granted of things

Off up to Edinburgh for a few days to help the in-laws out with a few house jobs. DH is driving so it’s actually quite a relaxing day.