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.

@Orangesandlemons77 I got referred to the ME/CFS consultant (back in the Beforetimes) in the neighbouring Local Authority as mine doesn’t have one. I met him twice then he referred me for CBT and discharged me because “there really isn’t anything we can do for chronic fatigue”.
I got a referral to a pain clinic, who said I was hypermobile and set me exercises to improve my flexibility They also said they don’t advise painkillers to treat chronic pain then discharged me, so I’ve been dealing with chronic unmedicated pain for 6 years now.
It seems if you have an acute self-limiting condition they ask you to come back if it doesn’t improve, but if it doesn’t improve and becomes chronic there also isn’t anything they can do.

@Orangesandlemons77 I haven't been coping at all. I just cried on Saturday. Combination of work stress and feeling so stressed with the heat. I've got that awful buzzing at the moment. Like bees trapped inside. Always worse when I'm boiling hot.

Thanks InMySpareTIme and sorry to hear that MewithME sounds like the tinnitus I get, I hope things improve.

I won't get my hopes up about this fatigue clinic then, will see how it goes. My GP said similar about the pain clinic, not to expect them to help too much with meds. I'm already on co-codomol and gabapentin and don't want them to take that away, as it does help a bit (have neuralgia after shingles)

The only thing I found to help in the heat was getting in a cool bath and putting my head under the water. But now I have a sort of blocked ear on one side, probably due to water getting in.

I have tinnitus too....this is a nerve sensation...like pins and needles or the sense of vibrating internally. It's horrible.

I think I have this too. I wondered if it was to do with perimenopause. Like an internal tremor, that you can't see?

I think the gabapentin might have helped it a bit. Also heat I find helpful for it, like hot baths (but not maybe when so hot)

I also think it is linked to stress.

Yeah I think it could be MEcfs or menopause or both. I have been stressed with work and the heat so probably on a bad run.

I've got lots of nerve twitches going on as well.

I've had one of the most hideous days with pain. It's so out of control. It's damage and degeneration, no question. It is a scale I believe would make most people scream and worse.

You have no choice though do you when it's something you have little answers or options for.

I have so much wrong,so much. I got off my sofa and found strength to swim in the river yesterday. It was beautiful. Now literally can't move and can't escape the intensity of the pain. Nothing touches it now.

I have EDS, multiple autoimmune diseases, full body crippling neuropathy pain that's now through face and head. Severe pressure in skull and head/ face permanently. Sleep abouy 2 to 3 hours a night. Broken vertebrae from osteoporosis, half my intestines removed and live on liquid. My ribs are so painful can hardly breathe.

I am shit scared of how severe the pain is and my immobility.

What a lovely idea for a thread.
Am recently diagnosed with PMR.
It was a shock and a relief for the pain which had been going on a few years on and off, but I has wrongly assumed too much gardening or sport and had been at physio.
I am sorry you are feeling low.
I have started anti depressants the day they diagnosed me as I felt quite low with the pain.
This has helped me I think.
I am very focused on my diet which I think is helping.
Reading this thread has increased my gratitude.
So many have it so very hard.
I hope you feel better soon.

I had this constantly a few months back but it does seemed to have improved, maybe speak to your GP about it, maybe they can help?

I used to take pregabalin but don't recommend that, it was horrible coming off it, gabapentin seems gentler and maybe it is helping, but not sure.

I'm also on HRT (gel and capsules) so maybe that is helping, although I have been on it a while. I know what you mean, it is really difficult to live with :-(

I saw this online when I first had it

https://www.drlouisenewson.co.uk/knowledge/internal-tremors-and-menopause-what-you-need-to-know

I'm sorry to hear this, could the doctors maybe help with some pain meds?

I also have a lot of bowel removed, mainly from adhesions from previous surgery. I have to have a low fibre diet, and sometimes just liquids, so know a bit what that is like

You have so much going on, it must be really hard just getting through the day

@JoyDivision79 I am really sorry to hear how hard things are for you. Does the pain come in waves? I hope it will subside a bit soon if so. I think feeling scared is completely understandable.

I don't think people talk about the fear with chronic illness much. I go through spells of being scared because I don't have support and I fear getting worse or being unable to cope with life situations.

@Greenvases sorry I don't know what pmr is? Glad you've found us.

I did try some other spaces for support. Some are good and some are not. I've had a recent disappointment with a space for support for MEcfs. I'm finding so much anger around these days with people lashing out. I hope our thread can stay safe and supportive for everyone.

Mumsnet in general feels angrier. It's a harsh world.

Yes the adhesions cause so many issues. They offer more surgery but acceptance has to mean no to that as I probably won't come through it. If I did - more adhesions.

That part I can cope with as I'm used to being very disciplined now with what I have to do to get enough calories in.

It's the pain and agonising pressure. I'm referred to a pain clinic and hold little hope.

I have tried every single thing. It's becoming so bad nothing would touch it properly. My spine is literally collapsing. The ssri and SNRI drugs I can't handle. I take tramadol once a day. I know the lines on this - it's bad. But I'm living a very sub standard existence and this takes me slightly away from it. I want that and will take it.

Removing as much external stress is very important and allows me to breathe through alot of the pain, to look after myself. Things many of us probably neglected for years.

I understand, they have told me mine is a 'conglomerate' so all stuck together in a mass, I can only have open surgery as keyhole too difficult and then only in a life saving situation. The last surgery took them several hours, and they did a resection of over a metre of it.

It's really stressful, I have been diagnosed with PTSD from it and I dread the NG tube treatment, I have been able to avoid it for several years doing 'bowel rest' and mainly having protein shakes when it gets bad.

I'm on co-codomol for mine which helps a little, I often have to lie flat which limits things a lot though. Hard to plan stuff, and have not been able to return to work since the last surgery due to it and pain and MH stuff.

Heat helps a little such as baths / sauna / hot water bottle, I also had a semi colectomy with the sigmoid removed and remaining bowel joined at the rectum, so I get a lot of pain there and womb retroverted on scans (probably pinned down by scar tissue, they said)

I'm sorry to hear about the spine stuff as well, as if you haven't got enough to deal with..

PMR is Polymyalgia rheumatica, I had never heard of it either.

Autoimmune disease but with a huge spread of expenditure out there. I was diagnosed instantly by my GP and confirmed with a blood test which I know is really lucky as some struggle to be correctly diagnosed.

It is a whole new world of investigation for me as whilst I am very interested in alternative health, I knew very little about these hugely debilitating diseases.

Sounds really tough @Orangesandlemons77 and @Greenvases. Sorry you're in pain. Everything is relative. I fell bad for moaning thinking how you're feeling.

Don't feel bad it's not some kind of horrible illness competition :-)

I'm home from a week in Italy where I managed a couple of trips and lots of lying by the pool in the shade dozing or reading a book. A tenth of what I would have crammed in to a holiday in my old life but it was still amazing to be away.

I'm now paying the price and have been able to do absolutely nothing since I got back. My whole body feels like a dead weight. Each arm feels like it weighs 10 stone when I try to lift it. My body is so tired but my brain is wired and I'm finding it hard to sleep. And I feel guilty as hell lying on the sofa doing nothing. No-one makes me feel like that, it's just how I feel myself.

I still think my holiday was worth it though on balance. I'm lucky. I know lots of us can't manage to get away at all.

Solidarity to everyone suffering. I have no helpful suggestions. I wish I did.

Haha true 😁

I am deeply tired. My son was brought by carers to visit me at the weekend and after an hour I was done in. It took me back to earlier times and left me feeling shaky and sad

I'm better for the cooler weather but miss the hot sun so much.

I've had a bad spate of migraines and stomach pain which are often linked to my diet. I've definitely had too much sugar again, easy to do when it's hot.

I think tiredness is what I am mostly feeling at the moment. A weariness.
I am usually a high energy person but am shattered and in bed early. I'm not in pain today which is a huge blessing.
I have to throw a celebration for one of my children this week, so am trying to find the energy for that.

@Greenvases I feel for you having to throw a celebration for one of your children. Mine are older now, but I still find it so hard to say no, i can't do that to them. I hate letting them down and end up pushing myself too much. Hope it goes well for you.

Today I have a quiet day- just a tesco delivery and cooking a meal this evening. I have a houseful of teens which is lovely, but they know I'm in bed by 9pm (I suspect they're delighted by it).

Solidarity with everyone suffering with debilitating fatigue 😩

Thank you for your sympathy and right back at you.
A friend came and decorated an my son helped me ready th space.
Another dear friend has offered her spectacular baking.
I will be ordering food.
The house is upside down, but I am on the sofa resting. I do a bit and sit down, all about pacing myself.

It is a happy occasion and I am not in much discomfort so I am taking it as a win.
Thanks again @BerfyTigot.
Early to bed is absolutely the same here, but honestly I was always a bit like that.
I love my bed🙏😁

Not having a great day here. Adhesions flaring up, so in bed. Had to cancel going out tonight, but no reply to my message.

Sometimes I think family don't get it and just think I make it up when I don't want to see them! I don't want a fuss / lots of sympathy, but not to feel like I'm just being a pain / annoying would be good.

The fatigue is so wearing isn’t it, I hear you all and hugs to anyone who needs them today. I find it tough that my head still wants to do all the things it wants but the body just can’t join in!

A quiet day here, going away soon so trying to rest/ pace more than usual. It’s just UK to visit my adult son & GF which I’m looking forward to but also worrying a bit about coping with the journey, how I’ll be whilst I’m there ect… I’ve done it a couple of times over the last few years so logically know it will be fine once I’m there and I’ll just rest/ pace like I do at home.

Teen away this week so feels very quiet with just DH & me rattling around! We drove to look at the sea yesterday so that always lifts my spirits and ‘ borrowing’ the dog we’ve recently met again tomorrow so looking forward to that!

@Greenvases
hope you can enjoy the celebration the best you can.

@Orangesandlemons77 sorry you’ve had to cancel going out tonight, it’s hard when that happens especially when others don’t really get it.

I’m in the post-crash danger zone where I need to rest some more but am bored of doing nothing. Trying not to self-sabotage but can’t stick at anything sedentary.