What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

Wow that was dramatic! Glad you are having a calm weekend.

I have started to think about Christmas but have a few birthdays to get through first. Middle grandson (teen, ASD) has taken against anything he perceives to be plastic, having worn crocs for years, so I bought him some leather and cork mules which he wears rain or shine. I do worry about his poor feet so have got him some sheepskin slippers for indoors. I've also just discovered Love to Shop vouchers so that sorts a few people out.

I start Christmas early because I can wrap a few presents a day. It is tiring but makes me feel somewhat useful.

Have a good day all!

I went for a power walk on friday with a fast walking friend and was tired after it. Did the same yesterday with my husband and came home and needed a nap.

I was such an active, run a round person and it is the constant tiredness that has really wiped me.

I feel that I am looking at my life through this new prism of how much energy I have.

So I can appear very well, look well, full of beans for a couple of hours but then return home, only able to go directly to bed.

I am in bed most nights about 7pm.
I cannot imagine having the energy to go out at night again, and yet we have several nights with friends scheduled.

I am doing the anti inflammatory diet, which is helpful, good fasting times, taking vit d, k, b, magnesium and I can't seem to up my energy.

I have a great circle of friends but seeing them is increasingly exhausting.

Morning all, couple of puppy pics to brighten the day!

Oh good grief @Realisation14 . I felt stressed just reading that. I do admire your ability to know what's good for you though. Keeping off your phone and meditating yesterday sounds excellent. Apparently a tampon up the nose is what sports people do with a nosebleed!

@TeaAndStrumpets also admiring your Xmas organisation. Yes...the wrapping! It's very tough. I may try and do the same although it's hard because people don't want to think about Xmas if you ask them what they might like! I'm also at that stage where everyone wants me to tell them what DS might like. So not only do I shop for him myself but both grandmas, his uncle and his own flipping dad want my suggestions. Mental load is too much.

I've just got some washing put away and have now stripped DS 's bed.... Operation clean sheets is a step nearer.

Having a break to let my heart rate come down. God I hate how quickly the weekend goes just because I have to pad all the chores out with rest.

I'm yearning for nature. Might be silly and go out. Not sure.

Cute

@MewithME Operation clean sheets...you are winning!

Take some breaks, though. I got a HR monitor during covid in 2020 and was shocked to see how I was reacting to quite normal activity. Pacing really works but it takes a very long time to pay off.

The trouble I find is when I am pushing through I get hyped up with adrenaline and carry on, thinking in my enthusiasm "Well I am getting things done very well, is there something else I can do while I've got some energy?" Always my downfall!

Take care.

Oh yes!

@Greenvasesi can’t go out in the evenings either. Once I accepted that, I felt a lot better but it took a while! If I do do an evening thing, which I try to avoid, I have to write off the next day to recover!

I was also super active pre this so you have my sympathies. I used to do the park run on a Saturday. I can’t even walk to the park now 😂

MEwithME could you just get out and sit under a tree or something? It might be nice and it looks a lovely day out.

I detest changing the sheets as well, grasping with the duvet etc, washing it all and hanging it out, is a right palaver.

I have an appt with the chronic fatigue clinic coming uo this week and a bit nervous. It is a video appt. I worry they will say it is just mental meant (have PTSD, anxiety etc as well) just have to hope for the best I suppose.

I know there isn't much they can do anyway but it might help with e.g. PIP I guess. I probably won't tell family much about the diagnosis anyway as they are not that supportive really. It might be useful for me though.

Someone online recommended this book called "Fighting Fatigue" has anyone got that one?

Hope you all get some peaceful moments today. I was wondering to myself this morning, do I actually just like resting and is this thing / diagnosis just an excuse for me to feel less guilty about it? Like a bit of escaping the world. I remember reading this book once called something like The woman who went to bed for a year and thinking, I could do that!

But I think it is more than that, and has been worse since the shingles episodes in recent years so the GP thinks is related to that. It is also confusing if you have a history of depression and she wrote about that in the referral so I will see what they say.

It's probably all interrelated anyway. I reckon most of us have some kind of history of trauma or stress which adds to it all. I think stress caused my shingles, anyway.

Excuse typos, have tried to edit but for some reason it won't let me.

@Orangesandlemons77 have you got a diagnosis of CFS?

When I finally tracked down a consultant and got a video appointment to get my diagnosis, the consultant was brilliant.

I mean that is all I have had in over four years but more than a lot of people get!

It definitely is all related. Trauma and sustained stress....tick. sleep deprivation for years... tick. History of allergies...tick. Viral trigger...tick.

I can't remember the questions on the consultant diagnosis questionnaire but I do remember he said key feature was PEM and alcohol intolerance too though not an official one.

Loads of people with fibromyalgia have PTSD or a history of CSA as well. There's studies on it.

I'm just having another sit after getting clean and dressed. The I'll see if I can sit out somewhere maybe. Not sure. Headache is happening again and my eyes are hot.

Feels like a low level virus but I somehow think it's PEM related.

Hello, may I join you? November will be my third anniversary of getting covid which developed into LC, on top of my pre-existing Graves disease.

My life looks very different now ....

Kind of. The GP wrote in the referral to the chronic. fatigue clinic it 'sounds like it' and included all the blood tests etc which were normal.

So this is the referral appt from that and I had a questionnaire as well which I sent back. So I guess this appt might give the diagnosis. It is also a video appt.

Oh that is interesting about the alcohol intolerance, I can't drink now or in the past few years, I think that was mentioned somewhere in one of my letters.

Yes I think fibro is somewhat similar in some ways, but not sure. The other main thing I get is a lot of this trembling feeling, I think we have mentioned it before.

Welcome, sounds similar to many of us on here. Mine has also been going on 3-4 yrs, not covid but shingles triggered mine. I have not heard of Graves disease.

Thanks for the welcome @Orangesandlemons77 . Graves is autoimmune and causes hyperthyroidism. Symptoms v similar to LC, so was tired but wired for two years before LC hit.

Have been reading the thread and it's nice to be in the company of others who 'get it'.

@Orangesandlemons77 Hope the CF clinic appointment is helpful. I think they can be a bit hit and miss depending on location but I found mine fairly helpful.
I’d imagine they’ll confirm a diagnosis if you haven’t had one officially, mine was in 2007 so many moons ago but I do remember a feeling of huge relief that the consultant and OTs at the clinic understood.

Hello @Swanhilde . I'm sure graves was mentioned on the first thread or else I have 'met' someone with it online. It is another tough one. But welcome to our little club of modest highs and justified moaning for the lows.

@Orangesandlemons77 my Dr doesn't know the difference between fibromyalgia and MEcfs. Drives me a bit bonkers when she lumps them together or over simplifies. CFS is tired and fibromyalgia is pain in her book. Not quite that simple is it?

Yes to the vibration. That's one of the worst things for me. It's been relentless for quite some time. I know it died down for a while but can't remember what I was doing that helped 🙈

Also, for those invested in my trivia, operation clean sheets is now complete. Not at all sure about commencing operation find a tree... It might be just veg on the sofa and maybe sit in garden. I think that would be more sensible sadly.

I am on sofa and eyeing up Slow Horses with biscuits for lunch...ha. Making the most of DS not being here. It's a treat not having to eat or cook sometimes. Terrible isn't it. I look forward to being able to just have a sandwich or not bother.

I am fortunate to have a wonderful DH who is chief sheet changer and bathroom cleaner. Hoovering is done by a robot and dusting when something is moved 😆

I am having a lovely morning in bed, drinking tea and enjoying the sun through the window. Might venture into the garden later.

Butternut squash soup for tea - DH is also chief vegetable chopper.

Wishing you all restful Sundays x

@MewithME Well done on your clean sheets. Mine desperately need doing but I'm currently crashed out having gone round the flat and finding 5 things to put away/throw away/give away in each room. Nothing really looks any better but I know I have done some stuff. I did get the towels into the wash!

You are fortunate indeed @Swanhilde . The man I married is a prize shit. He's bringing ds back early having managed 24 hours with him after nothing for 10 days.

(not married now obviously)

Garden sounds a plan MEwithME, we don't have a garden (well a shared one but park is nearly as close) might try a short walk later with DH to get out the house.

Had a bath and found the sheets have been changed so that was a blessing.

I totally get what you mean about not cooking, that's not terrible at all. I have some ready meals or cereal sometimes. Would love for the rest of them to do more cooking though.