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.

Same as you!

I met a friend at 9am today. In a pub!! Impossibly early for me, especially when I can't sleep properly. She's a friend who fell out with me a few years ago over a misunderstanding about another friend (I know, very schoolyard). Didn't bother me, but she over thought it all and then didn't know how to reach out.

Anyway, I called her, cleared the air, said I had no hard feelings at all, she suggested we catch up and I was so happy! But 9am!! She did drive 40 minutes to meet me and it was a three minute walk for me, my end.

But, geez. I was almost on my knees by 11am, crawled home and fell asleep. I've just woken up on the settee, with my dog, under a throw.

I didn't realise a pub would be open at 9am! Sounds quite fun. I'm still in bed, have got up for cups of coffee and meds though.

It's raining outside and grey, DH is suggesting a walk but I'm not too bothered.

@Stressybetty . It's good to meet someone else who understands the executor stress. Mine is compounded by a sibling who does "competitive stress" and is always going on about how they have a zoom meeting with/ has a deadline for <insert very well known name here> which both irritates me as being so name droppy and also makes me feel like they are having a dig at my non- working lifestyle. Would it help to do 30 mins a week on it. That's how I do my tax return and it does help.
For those of you due to do 24h ECG and worried about reacting. Why don't you go to the appointment but express your concerns there. It can't be the first time they've run into that problem and they may have strategies/anti itch meds/ different pads to try. If the worst comes to the worst you can just take the pads off and say you couldn't bear it. There's always a chance that they might be ok and if not you haven't lost anything Vs not going.

@MewithME I can't manage a lot of scents, especially artificial ones, since chemo, which I why I make my own bath salts. Lavender is good for sleep, but there are lots of others I like too - it's just that there are even more I can't stand.

Yes, it's funny. It's seems to change too. Not sure why it started with me
Just a sensory issue I think. I don't like scented candles anymore, never have liked some strong perfumes. My mum's give me a headache and asthma! (She knows this and still wears them around me and gets annoyed if I say anything 🙄)

Even some essential oils like you say can be problematic.

@EducatingArti I don't think you can remove them yourself. That's my worry. I just don't think I can face it. I feel like I'm treading such a fine line all the time , anything like that can cause a crash and I just don't think I can do it this week. I think I will postpone so I can think about it a bit more. I feel bad for doing it late notice but I just haven't had time to think it through and I know I'm not feeling strong/ at baseline in the first place.

I had a 24 hr ecg and the itching from the tabs was beyond awful. Sorry @MewithME that isn't what you wanted to hear! I remember wanting to rip it all off. I dont know how I didn't in the end.

@Idontknowhatnametochoose actually I think it is what I want you hear. Id rather know now and postpone or just cancel frankly. I had the regular ECG and it was all fine.

I just can't cope with an allergic reaction this week. I really can't.

Glad it helps in that case. It really was unbearable for me. I was counting the minutes until I could take it off. I wouldn't recommend if it's going to be another stress at this point. In my case I was desperate to have a pots diagnosis confirmed so I persevered.

Well I feel like I might be PoTsy but is that actually how you diagnose? I don't feel like my GP knows much. She's good enough to refer but almost too easily. She is quite set in her ways and doesn't really understand Mecfs at all. I had to find my own specialist.

MewithME
Recently, I had to wear a Zio heart monitor for 14 days as I'd had an attack of thumping heart beats (I suspect it's Long Covid related). Yes. It was a bit awkward. Yes. It itched a bit. But it was fine. And it was worth it, because now I know that my heart seems okay.

Could you save it for the weekend, the ECG perhaps if it is easier then? Might be worth it in terms of reassurance.

I do understand though. I cancelled my CBT sessions which were 60 mins long this week, was too tired. I did explain.

I also had a tilt test but for some reason was told a 24 hr ecg was needed too- perhaps to rule other stuff out.

You may be fine with the monitor but if you tend to be allergic then perhaps do it at a weekend as suggested above.

I'm spending my day doing nothing (as usual) whilst feeling knackered and crap from my medication. At least it's the weekend which means I have my husband and children around and therefore my levels of self pity aren't as low as usual as I'm surrounded by the positive things in my life.

Thanks all @Orangesandlemons77 They don't do weekends. You have to attend an appointment to get it fitted and then return it the next day.

I'll just explain if I can get through to someone. There's a text service so they should get that tomorrow and I'll ring as well. I just can't this week. It's only because I've had the headspace to really think about it and think about how I am, that I know I can't do it just now. I've pushed through all week. It's been so good this weekend to have some space and time to sit with how I feel. So needed.

The rain is lashing down outside and there's strong winds tomorrow. Summer really disappeared quickly didn't it?

Hi all,

Been a chill weekend here for me. One of the best ones I have had in a while. This long Covid journey can be so unpredictable but I am enjoying this good patch. I have made some changes recently which I think have been impactful mentally and emotionally which is freeing up energy. Like a decluttering of my actual life routines and emotions. It's liberating. @EducatingArtiI like the sound of soulful simplicity - it sounds like it would fit into my goal to declutter my general life and live very simply and find peace.

I hope the rainy weather is helping those who have had to stay in and rest. I find it much easier to do in this weather.

For those in work - I hear your struggles. That was me last year before I stopped working. It's the best thing I did but it's been hard to balance finances when you own a house, I often romanticise renting a house where I don't have the responsibility of fixing everything. I'm hoping I 'shrink' my life enough to manage work and two kids whilst maintaining my health to a reasonable level but if not I may just get my wish of renting next year when my mortgage fixed rate ends.

@Idontknowhatnametochoose I have never heard of anyone else having the same experience. Such a shame - they were expensive and I was so hopeful they would help

Seems there is no one way they diagnose POTs. Mine was diagnosed by simple heart rate monitoring.

I did get lots of heart palpitations. Spent some time in A&E for ECGs which were always fine. I eventually did research and monitored my own heart rate with a polar HR band and took it to the doctor. Visible HR monitor is also good for evidence. My GP trusted my own observations and did a sitting and standing heart rate to confirm but I guess it will be down to each individual GP. I then just had a heart scan to check there was nothing structurally wrong.

I still get heart palpitations from time to time, especially when I've overdone things. It was the worst for me when I was in work and pushing way past my limits.

In the beginning I didn't know what it was and constantly felt anxious and on edge. I eventually learnt that my body was pumping out adrenaline each time my heart rate spikes which was draining me. Constantly in fight or flight. Getting my Pots under control has been one of the main things to help my fatigue and stabilise my energy.

My god! Sorry for the essay!

@Tiredandwired2 I really recommend the Soulful Simplicity book.
It was written by a woman who was diagnosed with MS and had to stop the treadmill of busyness she was on. Then she worked out what worked for HR, not just in terms of physical minimising/ decluttering but other areas of life too.

It is a very gentle ( and I find inspiring) book.

her, not HR!!!!!

I do get palpitations regularly but the ones I had a while ago were more like a pause then a big thump and sometimes I felt like I had to cough to stop it. It hasn't been like that for ages.

I have visible and my heart rate often spikes from eating and stairs. It definitely goes up rapidly when I'm standing but I don't get faint or dizzy. The doctor knows I have a heart rate monitor but wasn't interested in it.

Book sounds interesting.

I hope that you can manage to postpone the ECG and not get put to the back of the queue. Hopefully they will allow that. I hope your week is less stressful then ;last week, and that the rain clears up. We too have had heavy rain all afternoon.

Hugs to everyone and hope you all have a good week.

I will check out the book.

Morning all. How is everyone?
I'm back on the probate paperwork this morning but have really bad neck ache!

This morning I'm prepping for my Endocrinology appointment this afternoon. Trying to get my head around all my multitude of abnormal and often contradictory blood results so that I can fight my corner and not be fobbed off once again. ChatGPT is a game changer for complex hormone results.

Had to cancel a lunchtime yoga class cos of the rain. But also fatigue. I was in bed most of the day yesterday as well. It is very changeable bit the rain is very heavy. I hope it settles down a bit. Need to go out for milk later anyway and to the pharmacy.

Just trying o listen to the calm app and let stress thoughts come and go. I think it might be peri, they have really ramped up lately.

More name tag sewing this morning, which I wasn't expecting. My daughter gave me some more of grandson's sports kit which needs labelling. It is secondhand (very sensible) and there is a pair of rugby socks which is absolutely DISGUSTING! So I have those in soaking in the hope that some of the stains will come out and they will soften up. There doesn't seem to be much sign of that however.

I'm going for a rest this afternoon, as I usually do.l, but I may wrap a couple of Christmas presents before then.