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.

@CharlotteCChapel that’s good news on your kidneys!

@MewithMEsorry you’re having a bad week - it’s so dispiriting isn’t it

I would just like one day when I didn’t wake up feeling like I’ve been run over by a bus. Then again, maybe if I had a day like that it would be harder to cope with every other day.

I gave blood for another research programme on Monday - I think this is my last one though as I find it too exhausting.

Sorry to hear that MEwithMe, I wonder if the work is sustainable or there might be another option. Sorry I am forgetful, not sure if it was mentioned before but do you get e.g. PIP? We recently did a UC claim and found it was more than expected possibly due to the PIP. Not sure.

I hope you can get some rest soon as it will be the weekend at least. And that your son settles a bit. I have been having all sorts of drama with my teen sons, one of whom who has a friend who is actively suicidal and has been spending a lot of time with her waiting in A&E for assessment. I told him he is being kind but am a bit concerned he is being leant on a lot, he missed his work some of the days last week due to it and hoping he doesn't get the sack.

I just cancelled the CBT sessions I am supposed to start today for PTSD. They are video appts 60 mins long and I am struggling too much with fatigue for that.

I feel a bit bad that I should have let them know with more notice but was hoping I might be OK. Now it has come to it, I'm not. I have had CBT as well in the past and it didn't help much. I think I already know the techniques and have a book on it somewhere. It has been over 6 months waiting for this as well and says if I don't engage they will discharge me. I have a friend who had help with EMDR for PTSD but they don't seem to be offering that. Wonder if they would expect me to try the CBT first. Oh well. Maybe I can access the EMDR some other way if needed.

Anyway hoping for a good day for everyone and hope you can avoid the rain, it keeps showering here.

@MewithME so sorry to hear that.

@CharlotteCChapel good that your kidneys are improving

@ChampagneRose let us know how you get on with the supplements- like you I've tried many.

@Tiredandwired2 I got a teen to help me declutter a bit. Had to pay her but it was worth it as she was able to take a load of stuff to the charity shop, clothes bank etc. So good to just get it out of the house but it does build up again quickly

Today I have a bit more energy so am going to the garden centre for a maximum of 15 mins to buy some hebes for a container by the back door.

I also have a dental hygienist appointment first, so my plans may change. But I'm used to that - as I'm sure most of us here are 🙄

And another.

Meditated, chatted to woman who comes to help me.Contemplating visit to cafe, but light me too much.

For all the LC peeps, I’ve found somatic therapy transformative

@ChampagneRoseThank you. It's so hard to know what helps isn't it. I currently take Ferrous sulphate, slow sodium and marine magnesium. I see a clear difference with them all when I stop them. It's so expensive though - mostly the slow sodium and magnesium.

I tried COQ10 last year to try and help my POTS and it made me feel absolutely awful. I have previously struggled with low blood sugar and it felt similar. Did a bit of research and apparently it can lower blood sugar. I seem to be extremely sensitive to most medication and supplements which is a blessing because it means when something works it's very noticeable but on the flip side when it has a negative impact I am floored.

@MewithMEHope things feel a bit better today. I understand the treadmill feeling. There is no let up when you have DC, never mind with additional needs. My DS smashed a mirror on the weekend in an autistic meltdown. The stress and fear is draining.

@ArseInTheCoOpWindowI will look into somatic therapy. Add it to my list. It's so hard to get my head around information these days with the cognitive dysfunction and having to pace.

Hello all. I'm a bit better today....at least mentally. Had to go in for another meeting but I excused myself early and did better at looking after myself a bit. I think I just feel a bit brighter because my son had a better day and I know I can rest tomorrow night for a couple days.

DS will see his Dad at last.

@Orangesandlemons77 you sound like things are tough too. I don't get PIP. I haven't applied. It feels too hard and not worth it. Without outing myself too much (can't remember if I said what my job is but think I'll be a bit vague otherwise my circumstances are quite identifying..) my job is full on but I am part time 30 hours and can usually pace myself reasonably well apart from at certain times...this being one of them. It should settle a bit soon. Fingers crossed. I'm a lone parent with a mortgage and not much pension so I am trying to keep going.

I will write brighter things at the weekend 🤞🏻

@Tiredandwired2 slow sodium sounds interesting! I will look into that. I don’t have POTS but I get very low blood pressure anyway so I’m constantly guzzling crisps (well that’s my excuse anyway!) so slow sodium and marine magnesium sound like something that could help. Thanks for mentioning them!

@MewithME glad you are feeling brighter. It’s such a rollercoaster this illness. I hope you get to have a proper rest this weekend.

i have to go to a return to work meeting today. I’m nervous and don’t know what to expect. I’ve been off 10 months which seems crazy. I’m still in pain, initially I was waiting for the pain to go but it looks like it’s here to stay so I have to try and make the best of things. At the minute it’s manageable which I’m grateful for.

@Tiredandwired2 no advice but just wanted to say that I can totally relate to feeling that you can't take in any new information.

Today i have a blood test and want to continue cutting back some lavenders. But I'm feeling very tired - probably overdid it yesterday.

My son has friends coming this weekend which will be exhausting as although he's technically an adult, somehow I always end up hosting.

He has made me a cup of tea this morning though 😃

Few nights of little and broken sleep from puppies, dogs and MIL. Got up at 8 with the dogs and did some overtime while the house was quiet. Really physically tired and achy, restarted LDN on a new bottle and having side effects mistaking 0.5ml for 5ml! Had old bottle open in fridge for months and finally realised it wasn't effective anymore.
@autienotnaughty hope work meeting went ok
@BerfyTigot hope your weekend isn't to stressful with the kids
@MewithME hope you're ok and getting some rest.
Hope everyone else is doing ok and resting this weekend.

@Stressybettythank you, it went ok although I need a chair with proper support which they still haven’t ordered! Although thankfully I have been given permission to order one. My manager made a comment about if it goes over a year I might lose my job as though I’ve done something wrong. !

I’ve woken up with what I think is a UTI. I woke up in the night with a terrible urgent urge to wee and then every time I lay down in bed, the same thing happened until finally around 2am I managed to lie in one position that didn’t trigger it. I am so so so so fed up of being ill. Why can’t I be well for just one f’ing day?

have done the boots online thing and waiting to see if I will get antibiotics or not.

I’m so fed up. I’ve also got really important meetings on both Monday and Tuesday. I’m starting to wonder if I should give up work, sell the house and be done with it. Everything feels so unpredictable. I just cannot guarantee I will be well any day of the week anymore.

Hello all.

I have rested. Still buzzy and feeling weak but I know I'm doing the right thing in being in bed as much as I can before this week starts. I'm fretting a bit about work and trying not to. My workload is too high. I'm just going to have to try and do a day at a time.

So today...I'm still finishing my coffee in bed. I always sleep with the window open and I can hear the church bells across town and the birds in my garden.

I have remembered there's nothing for my fusspot child to eat for packed lunch so will have to drag myself to the bloody shop 😭 I feel like I'm not doing a good job with him just now. He's 14 but can't help with basic things even still. Most kids I know make their own lunch by now. He helps a little bit but gets easily overwhelmed with his autism. And I'm getting overwhelmed by doing everything.

I've got a 24 ECG this week and I'm worrying about it. I remember someone here mentioning they had one and It drove them mad itching? Any advice gratefully received! I feel like it's a waste of time but best not cancel as it's been offered. I just don't want it to stop me resting and making my ME worse this week.

I have to ring my mother later. Weekly duty.

I have laundry to do too.

Honestly, writing all that out makes me want to go back to sleep. Rest is impossible really in the amount I need. DS is back, I hope, after lunch as it would be nice to not have to make it. Exh does very little actual parenting. He could at least make his lunch and give me a small break. Sigh.

Anyway, yesterday I did watch some TV and spoke to a friend who I've not spoken to in a while so it was ok, yesterday. Wish weekends were longer.

@ChampagneRose that sounds miserable but good you can do that online thing. I didn't know about that.

I want to work but don't want the level of stress I have. Not sure what the answer is.

If you sold the house, what would you do? Would you be able to downsize and have some money left over?

Yes it’s quite a good service (the Boots thing). If they deem you worthy of antibiotics you can go and pick them up in 2 hours for UTIs.

I guess the idea would be to downsize, free up some money and stop working for a while. Problem is it’s something that sounds good but would be a lot harder in reality and I imagine once I stop work, I’d never go back. And I definitely don’t have enough money to stop forever. I think I think of these things when I’m really stressed as it sounds so appealing.

I saw someone who said you could take early retirement for ill health but I also don’t know if I would qualify. Maybe it’s something I should start looking into.

@MewithMEhope you get to stay in bed as long as possible!

I'm so pleased I've found this thread. I've got fibromyalgia, hyper mobility syndrome and also working through some emotional issues and I'm constantly exhausted.
I took early retirement 2 years ago from being self employed as I really wasn't coping even working part time. ( I had some savings and a very small pension that kicked in at age 60 and reckoned I could just about manage till my state pension kicked in).
For the first 6 months after I retired I just spent the whole time sitting on the sofa wondering what had hit me. I did then begin to carve out a bit of time to start to work towards a new normal.
However since the death of a parent earlier this year and a really complicated financial situation to sort through as executor and also dealing with a sibling (fellow executor) who is very different to me, I've had a huge fibro flare up.

Today I have had breakfast in bed, messed about online, done a 5 minute " morning reset" on the Soma share app ( basic version is free).

I've then spent 30 minutes working through a couple of questions from the first section of Courtney Carver's book "Soulful Simplicity" which I do recommend if you want to worked towards a more pared down simple life.

I'm about to go and do 15 mins of housework/tidying. I find if I break things up into sections of resting and activity and actually set a timer, I get some things done which is better than nothing.
Hope everyone has a good day xx

Hi @EducatingArti, welcome. Soma looks interesting. I'm years into an executor nightmare and still not done. The underlying anxiety from it is always in the background.
Had a massive emotional meltdown yesterday and think I'm just not coping well. Always irritated, on edge, exhausted, negative and hormonal despite being on HRT. Came off my tiny dose of venlafaxine last year and I think I'm just not coping. Had some left so restarted today rather than waiting for GP appointment and will see how it goes. Bit gutted. Feel exhausted and washed out today. Did some overtime and having a cuddle with the dogs. Still need to depoop garden and mess about with puppy pens.
Have a good Sunday everyone

Just found the new thread. Not been around a while. I've relapsed and currently in bed most of the day. Im often better in morning then by lunchtime feel fluey and weak again so back in bed. Finding everything hard. My elderly dog who I take out with my mobility scooter is looking more frail and I'm crying a lot with it all. My nights are very restless with dog needing a wee and cat meowing and im beyond tired. Hope everyone else is coping OK.

@tiredandwired2 another potsie here and I had the same problem with coeq10.

I did some name tag sewing this morning. I have just been chopping vegetables and sauteing them for a vegan loaf experiment... I'm not vegan but I'm hoping my vegan BIL will be coming to stay soon, and I'm planning on a very small retirement party to which at least one vegan, and several vegetarians, are invited so I thought I would see what the mixture is like made into mini balls or patties.
I'm resting for a bit while the lentils are cooking, before the next stage.

I don't have anything else planned for today, apart from a bit of tidying/washing up after myself. I will have a bath this evening, with some Epsom bath salts if I get around to mixing them with some lavender oil.

I have three medical appointments next week, and we're going on holiday (fairly locally) on Friday, so it's going to be a busy week.

Have been resting all day. Overdid it yesterday. I've got ME.

@DilemmaDelilah well aren't you lovely 🥰 That's v sweet. Hope your efforts turn out well and it is appreciated by the vegans.

I have made soup....well, I will have once I blend it.

Wash done, ds has some uniform ready for tomorrow now. Exh did not manage to give him lunch (FFS) so I did have a meal to do after all when he got home. I've told DS he's getting sandwiches tomorrow and I've given up. He laughed and said sorry he's a nightmare. Bless his heart.

Back in bed for a bit now watching Karen Pirie. I don't think I really know what's going on but enjoying the scenery at least and characters. Have I turned into my mother at last? Oh dear. 🙈

Also due the 24 hour ECG and have been looking it up after I found the post on the other thread. Seems like allergy is common and I just don't think I can face it. I'm not convinced it's necessary. I might postpone and think about it some more.

I have not had the palpitations I was getting for a while now. It was bad when I asked.

I am allergic to nickel and loads of things so I bet it will be torture. I think I will postpone. Someone tell me that's a good idea please. Feeling bad about messing them around. 😔

Resting too now @dizzydizzydizzy

You doing proper resting? I'm doing the lying down watching telly on my phone resting in bed. 🙂

@DilemmaDelilah the lavender sounds nice. I'll have to try that.

I've not like perfume for a long time ... find my senses are just overloaded easily....but I bought a lavender one in m and s recently and it's gorgeous 🥰