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.

@BerfyTigot hi berfy - I was bedridden in 2023 when this really hit me (lying in a dark room with no noise). I got Covid for the 3rd time in October 2022. Thought I had recovered but was getting (what I thought) was infection after infection but I now think was probably PEM. Eventually in August 2023 I woke up and couldn’t get out of bed and it really stayed that way for months.

Luckily work allowed me to work from home though in reality I couldn’t work and I ended up resigning. I genuinely thought my life was over. I’m the breadwinner so I thought we would have to sell the house and move. I also got no help from doctors!

I have a confirmed HSV infection and was getting cold sores all the time (which isn’t the cause of this but I just think one of the characteristics of my PEM) and I started taking Valacyclovir to treat the outbreaks. This got me from bedridden to back on my feet. I started LDN in October 2024 and although I haven’t had massive improvements in my fatigue, it really helps my brain fog.

I can work now but where it really impacts me is physically. I can’t do a lot, I can’t walk far (about 10/15 mins slowly in one go is all I can manage) and I have very very weak arm muscles (e.g I can’t carry a bag of shopping at all because I simply don’t have the strength). I’ve been v interested in all the recent research into muscle problems of those with ME/long Covid as it’s v similar to how I experience it. I’m in bed by 8/9pm every night to enable myself to work. I spend probably 75% of the weekend in bed just so I have the energy for work but without work, I would have to sell and move so for the time being I keep on going.

i would try LDN if you haven’t because it does work well for some people - i think it helped me become more like my old self mentally but unfortunately it had no impact on my fatigue - I wouldn’t be without it though.

I would like to try Mestinon but I can’t find anyone to prescribe it - I would be interested to see if it helps my muscles - the problem with being in the UK is there are so few people who will prescribe anything. I look at the Reddit forums a lot as they have a load of helpful info.

I can’t really pinpoint one thing on its own that helped me improve - it’s probably time. I’m in my 50s now so it’s unlikely I will recover but at least I have a semblance of life now. I saw in 2023 how quickly that can go so I’m v grateful.

I get PIP (just standard mobility even though my daily living is far more affected than my mobility).
Money wise it’s not much, given that I’m mostly housebound and need to block out a day either side of any activity, but it gets me a blue badge.
The blue badge means I can park close enough to things to actually do anything when I get there (I can’t drive but DH takes me wherever I want to go).
ME/CFS is hard to score points for as it doesn’t fit neatly into the PIP descriptors and assessors often dismiss fatigue and cognitive dysfunction because it’s self reported and “unproven”.

@ChampagneRose thank you so much for your detailed reply.

Quite similar timescale to me, and I can relate to no noise, no light. And I'm in my 50's too.

I'm lucky in that I have a very supportive GP, although she doesn't know much about fatigue- based illnesses so I'll be on the phone to her about LDN this week.

I have improved to the point of being able to watch tv, drive, do a few minutes tidying/decluttering and a 5 min walk. Which is such an improvement and has really helped my mood, although i can't pinpoint what helped other than time passing. But I'm greedy and want more!

Like @MewithME said, I think I need to work on acceptance 😢

I get LDN through Dickson’s chemist in Glasgow. I don’t think the GP can prescribe it.

https://shop.dicksonchemist.co.uk/product/urgent-prescriber-consultation-referred-by-the-ldn-research-trust/

I totally get it @BerfyTigot. It’s so hard isn’t it. I can’t drive yet - I haven’t driven since 2023! I haven’t walked the dog since then :(. I try not to think about it too much as I still have days when I find it hard to believe this is happening.

Yes I get pip for m.e. I'm quite severe though and have help at home.

Thanks for the replies about PIP. I get it too but have had a review and it seems not at the range which the new proposed reforms need (if they come in) so not sure about the future. With me it is daily living more than mobility as a PP mentioned.

I get low rate mobility on pip, needed the blue badge to be able to park in the work carpark anytime. (Civil service, weird parking points system). Have finally weaned myself off the tiny dose of venlafaxine I was taking and started LDN this year. With the LDN I increased the doses too quickly I think and also kept forgetting to take it. Have restarted again taking it slow, no improvement yet. Moved house mid April which really set me back energy and health wise and hurt my knee doing so. Really want the LDN to work and slowly build myself back up and lose weight and improve my physical strength.

How does the LDN work please? Sounds interesting.

I think it’s some sort of modulator of your immune system. Whenever I went up in dose, it gave me flu symptoms so I also had to go very slowly. I’ve only just gone from 4mg to 4.5mg (9 drops) this week and it has set me back a bit. Some people it works straight away but the majority of people have to wait a while before they see any impact.

I have ME and Fibro and also get PIP but it’s supposed to be about how the conditions affect you and the help you need rather than what conditions you have if that makes sense! Such a stressful process though. I’ve been moderate/ severe for a long time now and when I last applied I was housebound and needed help from carers which in some ways at least helped provide evidence to back up my application form. My baseline has improved a little very gradually over the years and so I don’t have carers anymore though do still get help from my DH and DD who is older now. I’m currently awaiting reassessment and with the proposed changes, I’m dreading the assessment and it’s hard not to worry tbh.

Re acceptance, I found it happened very very gradually where I had to learn to focus on what I could do, rather than what I couldn’t. I feel it’s a bit like the grief cycle whereby you go through a process of grieving for the old you until you very gradually learn to live with the current you. It definitely isn’t linear though, I’ve had these conditions for many years but I can still have spells of anger/ sadness/ frustration at them, especially in crashes/ flares.

Tried around 1.5mg of melatonin last night to see if it increased my deep sleep. Never manage more than an hour. No difference but feeling rubbish today from it.

Im joining. Been bad for about a year now. No diagnosis. Blood test next week. Today I've washed up, got dressed (into slouchy lounge wear, watched a movie with kids and now I'm exhausted :(

Sorry to hear that @RareMaker

And remember, even if you blood tests don't show anything it doesn't mean it's all in your head. I spent 20 years being told by doctors I there was nothing wrong with me because my "blood tests were normal" only to discover that
a) there are lots of layers of different types of specialised blood tests so that's a stupid answer and
b) some things don't show in blood tests at all - I was diagnosed by an electric current test

I hope the blood tests go well, and welcome to the thread even if it's not one anyone wants to qualify to join!

Spent this morning doing some housework and then my sister popped in unexpectedly to drop DD birthday present off. Managed to do a bit more housework after she left but got really weak and shaky so had to stop.

Thinking of getting a cleaner to help me do the heavy jobs.

This weekend has been rubbish emotionally. I am 2 years post seperation and the past week I have entered a second wave of grieving for several reasons. It has zapped so much energy from me.

Interesting to hear about peoples experiences of LDN. It's something I am definitely considering.

@Tiredandwired2 I got a cleaner last year for 3 hours a week, it’s really made a difference to keeping on top of the cleaning, and frees me up to use my energy for more enjoyable things.
Also means the doom piles get tidied every week (so the cleaner can clean) so I don’t leave important things long enough to let them become invisible.

Me too. I wonder about LDN though because I am also desperate to try something that might help, but it seems to work by reducing processing of dopamine. Low dopamine causes fatigue, poor memory, POTS, shakiness, feeling depressed and anxious etc which are some of my current symptoms. I really don’t want to make myself feel worse.

LDN increases dopamine. It works in the opposite way to naltrexone at high doses.

https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn

i upped my dose this week and it always makes me feel shit every time I do that but I know if I hold out a few days, it should calm down

busy week this week and I haven’t been sleeping well which isn’t great - keep forgetting to put voltarol on my stiff neck. Do any of you use anything for stiff muscles/joints? I haven’t found anything that’s particularly helpful other than the high strength voltarol.

Oh, interesting thanks. I will have a read.

Can you get the LDN on the NHS?

No I don’t think so (I don’t think it’s licensed by whatever authority it is that does that here - though my GP is not supportive so I’m not sure how different it would be with a supportive GP).

I think maybe it varies by condition- I’ve heard that the NHS will prescribe it for some things. Thank you for the website link. Can’t look now for headache but I really appreciate it.

Got a letter today about renewing my bus pass, spent about half an hour overthinking how hard it would be to get recent proof that I would be refused a driving license, fill in the form and get it posted.
Then I looked on the bus website and realised I could do it online in a few minutes with a photo of my blue badge.

I stayed at home yesterday thinking I'll have a rest day, but nooo 3 stressful incoming phone calls all regarding children (have my own son with issues plus we foster a child), and then based on those had to make 3 stressful outgoing calls and just felt so mentally overwhelmed by the whole thing.

Going to attempt another rest day today, not leaving the house.

A friend is taking my dog to the groomers. I won’t be doing much, very little sleep.