What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

Next one ready once we have filled this up. I suspect I will make a phone call and have a nap. House still gross... So just in case we need it...set it up now ...

https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

@JewelleryCat I feel heavy and slow when I'm in PEM. Today in fact.

Sorry to hear you are in PEM and I hope the nap helps 💐

Afternoon all. Definitely get that heavy feeling on bad days - feels like I'm dragging my body around, especially my legs.

Surprise trip out this morning as friend I was meant to be meeting on Monday had a change of plan. Walked a bit further than usual and was mostly ok though a bit breathless and struggling with the heat/ light a bit. Nice outing though - sat outside a cafe for lunch, saw lots of greenery. I'm indoors hiding from the sun for a bit now.

Definitely a PEM symptom @JewelleryCat . I describe my arms and legs as feeling like they're made of concrete - impossible to move or lift 😞

Afternoon all,
Tired and PEM here today. Not as bad as a few days ago though.

I have the heavy feeling. Feel like a door that needs oiling. My fingers are always the worse. Always drop or throw things accidentally.

Managed a drive to pets at home to pick up the dogs food and did my vote ready to post off today.

Now resting for a bit before I go and pick DS up from my mums.

I planned fajitas and Tacos for tonight but now don't feel up to it. So now the decision is fish and chips (means driving there and standing in queue which I don't know if I can manage), takeaway that delivers (but sometimes worsens my PEM) or just cook the fajitas and tacos and pay the physical price. Or go into the shop and buy a ready meal. Each option makes me want to cry. They all come with a cost and even thinking about it is costing energy. Arghh!

Sorry, rant over.

Sorry for anyone else struggling and hope some are able to have a decent weekend.

Oh @Tiredandwired2 ...I know that feeling well.

It's hard. Sometimes it feels like there are no good options. I could have cried having to do dinner last night. The whole time I am sorting it, I am just longing to go back to bed and then think how shit it is for DS.

Feeling like that right now in fact but will rest before I have to cook again 🙈

@Swanhilde i didn’t link it but I was having quite a lot of PEM about a month ago and definitely the heavy joints that felt very hard to move around. It’s good to know it’s related to when I get PEM so thank you 🙂

Hi everyone. Feeling really awful today. Dh sent me to bed at 9.30 last night but I couldn't sleep. It feels different to pem and now i'm terrified I've caught covid. A friend I saw the other night sounded like she had a slight cold. So now I'm worried I've caught covid and I'll be housebound and unable to walk for 6 months again like last time. I have no idea how my work haven't sacked me yet tbh. I've been off sick for ages and am only getting worse as well. I'm so scared, and my gp has sympathy but only does blood tests that come out fine.

Sorry if I'm not making much sense either, my brain feels swollen almost. I feel like I've been poisoned. I can't really stand up without feeling dizzy and really unwell.

Thinking of taking one of my hard-core painkillers and have a 12 hour sleep tonight but I'm pretty sure I won't sleep the next night if I do that.

Hope everyone else is having a better weekend than I am.

I wish I had any kind of medical professional to turn to for advice. Instead I have to manage it myself. That's also exhausting.

@bedfrog would it be worth testing for covid? How come the gp only does blood tests? Can’t they do anything else, like refer you to places for more support?

@bedfrog I'm so sorry you're feeling so awful. All you can do is rest and drink fluids and hope it may be PEM. A few times I've realised I'm ill and it's not PEM, so I understood the panic but not every time is covid and not every time will be the same. Sometimes I've taken ages getting over something and sometimes I haven't.

Sometimes I've been convinced I'm coming down with something and it IS pem. This illness is very weird and mentally hard too. Try not to catastrophise. Just try and rest.

Hi @JewelleryCatthere is nothing to refer me to. There are no ME services in the whole of Scotland. I've tried private Drs as well but they aren't much more helpful. It's awful.
I have ordered some covid tests as I still qualify for free ones from scotgov. I don't think it is covid though as when I had it before I was extremely, horrifically ill. But maybe I'll get lucky (?!) and have a milder case!! Thank you

Thank you @MewithME very wise words. This place is invaluable

@bedfrog when you are ready we have the next thread ready btw

https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

Didn't want you to miss it.

I thought we didn't have many posts left but misread it or miscalculated..brain fog..bad eyes.... So went too early again 🙈

Thanks for all the kind wishes.
It’s been utterly terrifying and the hospital experience was hell on earth. I think I’m still processing that let alone my new diagnosis. It will take time.

Just confused faces when I managed to say I had severe ME and I needed a dark& quiet space.
I was placed in a ward next to several elderly ladies who shouted out all night. One had paranoia and screamed at us all. Not her fault but ME and need for rest isn’t mine either. Plus I was in the worst pain of my life as the stroke couldnt be treated initially due to the bleed so I had to wait it out. I was in there 6 nights. Not much rest. The opposite of what I needed. Morphine, dark glasses and doubling up with earplugs and noise cancelling headphones got me through if anyone is ever in a similar position.

I feel so very let down initially by my GP surgery who refused to see me because I phoned too late in the day despite a 5 day severe migraine, dizziness, muddled speech and GP telling me to call back if no change. Also apparently the prescribed medication made things worse and possibly contributed to the stroke.

By A & E who left me in a corridor despite ambulance suspecting a stroke and even when I got through to the dept, I was next to people having taken bad drugs and left several hours with them screaming and vomiting right next to me. The stroke team wasnt called despite DH pushing for it. I couldn’t follow their instructions or retain what they said.

Then once the bleed was finally discovered, a terrifying night in resuss telling me I might be transported to a bigger hospital for brain surgery where neither myself or my husband knew what was going on. It didn’t happen thankfully but I was so so scared.

Sorry to offload but it helps getting it out. It will pass, this will fade, The stroke team will support at home now. I’ve a good chance of making improvements. It’s going to be a slow road but slowly slowly is something I can do.

Thanks for listening.
Thinking of you lovely lot too 💐
Will be back on thr new thread when I can

@MewithME I definitely felt like there was no easy options. This is what people without fatigue don't realise when they think it's just tiredness. Nobody around me gets it and I have stopped mentioning it. This is one of the only places I can let it out and know you lot will get it.

Anyway. Dinner made and feeling a bit calmer now.

@bedfrog sorry your feeling awful. It really is a terrible illness. I think what @MewithME has said is spot on. It can always change and it may be a different 'flavour' of PEM. in terms of private doctors have you tried the long Covid doctor - Clair Taylor. She is meant to be really good. Although her costs have gone up quite a lot recently. I haven't used her myself but considering her if I feel I need to.

@TodayIsatrickyone What an awful experience and I'm not surprised you feel let down. The experience in itself sounds traumatising. Maybe went your feeling better you could put a complaint in so they can learn from their mistakes. I know that's another thing though on top of everything else.

Please do offload @TodayIsatrickyone and everyone else. We can be here for each other when others don't get it. I'm so sorry for what you've gone through. Sounds just horrendous.

Has anyone seen the stuff about Martha's law in the news? I think it's vital that we know about it with MEcfs or any other condition that is misunderstood at hospital. My neighbour invoked it for his wife this week and they have completely changed their approach to her care after weeks of worry and poor care.

@Tiredandwired2 I'm half way through cooking tea for DS. I can't be bothered for me. I'm having a veg burger from the freezer 🙈

I have a little stool in the kitchen. V much helps along with my noise cancelling earbuds to reduce the noise from the oven and fan. Glad you are feeling calmer.

I feel better for my nap. I think I had good quality sleep for a change.

I haven’t heard of Martha’s law but will look it up when I’m able.
In the midst of all that hell, to redress the balance a little I came across some of the kindest caring souls.

The nurse who rubbed my back when muscle spasms were agony, the nurse who told off everyone who kept turning the light back on or opening my curtain and the one who kept wheeling me to a quiet shady spot in the garden whenever she could as she realised that outside and quiet calmed me instantly. Also the porter who wheeled me for multiple scans and shouted out directions so I didn’t feel more disoriented in an eye mask. The kind soul who held my hand whilst waiting for the MRI scan and the cheeriest soul opposite me who had to put up with my crying in pain a lot who still blew me a kiss every time I was wheeled past.
I’m so grateful for all of these. Plus my DH and DD have been incredible even though it’ must been so tough on both of them. After 40 years, I realise all over again I’ve got a good one here. I’m definitely emotional which apparently can be an effect of stroke!

Ask your DH to have a look @TodayIsatrickyone . Not surprised you're emotional! You've been through a lot. Try and tell yourself you're safe and loved and just rest 💗 x

Absolutely. Think I’m over sharing though forgetting this is public and don’t want to identify myself! Rest, rest, rest!

Thing is...yes it is public but this is also probably the most boring thread on Mumsnet for anyone else so we won't end up in the newspapers 😉

I have different usernames. I find that helps. If anyone read this thread who is my friend or possibly colleague they might know it's me but there is little to no chance they would. Unless my lovely colleague who also has MEcfs is on here too!

@TodayIsatrickyonethat sounds truly awful, I cannot imagine how you feel. I hope you're able to rest and relax a bit now and I'm so glad you have someone looking after you don't worry about oversharing, I think we all need to do that at times. You've been through such an ordeal.

@Tiredandwired2 thank you, yes I have seen Dr Taylor. She diagnosed me with dermatographia and said it was MCAS related. She's got me on montelukast and I've also spoken to my gp about other allergy medicine. It does seem to work a bit, thankfully. Last i heard she wasn't practicing any more though, something about parting ways with the clinic she worked with? I'm not keeping up as I cant really afford an appt anyway

Right....3 posts left.

See you on the next one. Link above a few posts ago!

👋