Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

I’m sorry things were so awful, I don’t think people can understand how hard things can be.

I am home early today (let out for good behaviour 🤣) and am in bed with a cuppa ☕

Boring day with little to do (v unusual) so my manager sent me home 🥳

The sun is shining and I'm feeling surprisingly okay - sleeping well for a change. I think being able to fully relax on holiday has helped me to keep that baseline. Hope it lasts 🤞

Legs on the other hand are not happy and ibuprofen are not working. Will try my heat bag later and see if that helps ☺️

Defrosted sweetcorn dal for tea with some rice 😋

Have a peaceful evening all 💕

@FurForksSake that sounds quite hopeful! Hope you get some answers.

@Swanhilde glad you've escaped!

I only just found out POTS and/or Ehlers Danos can cause heavy periods. I had them all my life too and was 'double jointed'. Never realised until recently that isn't a good thing. Just thought I was bendy. Didn't realise it might have downsides.

So many overlaps.

If men had debilitating painful periods there would have been more treatments by now.

We vacated the house for a couple of viewings. Now I need to find everything that got hidden before we left. A quiche has been defrosting in the tea towel drawer!

I wore the wrong shoes to go out and my burns are protesting. I am shocked at how long it's taking to heal over, but I suppose it takes time. I'll never make any sort of career as a foot model now 😃

It was so nice to get out for a few hours, just drove out to DD's had a quick cuppa then back. Lovely sunshine, flowers blooming, feels very Spring like.

Glad it seemed positive with the gynae @FurForksSake

I didn't realise heavy periods could also be linked with hypermobility - I've been on the mini pill for years mainly to stop mine, because they put me in bed with pain for the first couple of days each time.

Spent a lot of time on Teams meetings today - thankfully only with colleagues who are used to me fidgeting about because I can't comfortably sit still for ten minutes. Still exhausting though.

Gynae called me out on connective tissue disorders when I reeled off my other issues and threw in anxiety, diverticulitis, multiple hip surgeries, dysplasia, skin issues, severe ibs, hyper mobility, subluxations and sprains and the dysautonomia bits (I didn’t mention my teeth’s bruising, scarring, sensitivity etc etc). He agreed that I meet the criteria for Ehlers danlos and asked why I don’t have a diagnosis and I explained I can’t get to see the right people to assess it. He wasn’t surprised by it and I didn’t realise it could all be linked. Apparently it could explain my horrendous haemorrhoids too 🤣

The sun shone today. I washed the bedding, did a bit in the garden and went for a short walk.
I'm tired now!

Hi everyone, I fell off the last thread as unfortunately DH's dad died a couple of weeks ago. He was an old man and had had a very contented life but it was still very difficult. I am trying my best to be a good support to DH, my kids and MIL. Dreading the funeral if I am honest because I don't know if I can stand and talk to people for all those hours. I don't want to let the side down. I'm sure it will be okay, just my mind getting side tracked by worrying.

Tomorrow I have a pre-appointment with the CFS service, wish me luck. Not sure what to expect, I have no diagnosis in this area but hoping they will be able to help me as my fatigue is not explained by my other health conditions.

@FurForksSake congratulations on getting back to work, I know you were worried about it. Glad it went OK and I hope it continues to be manageable.

Welcome @OdddSox , hope you've had a better day.

The sun has been out here today too. I went for a walk that was probably way too long, it was just so lovely.

I'm sorry @VikingNorthUtsire . There's not a lot we can do for these life events. I'd say just try and sit plenty. Take yourself off for a quiet moment if you can here and there. Don't worry about being rude and not chatting to everyone. Funerals are a blur. Adrenaline will get you through.

Thank you @MewithME. I sort of feel like everyone will be looking to me, together with DH and BIL, to circulate and make everyone feel welcomed and appreciated. But I am sure I am over thinking it, and it will be fine.

I have booked the day after off work, so I can collapse then if I need to.

I had the social services lady ring me this morning, she listened and took notes, then she said she would discuss with OTs and something called a wellbeing hub, anyway she rang back and said she had been racking her brains but didn't think they had anything which could help me as it would be 'too specialised' and that from what I had said I already had support form family and things like a stepping stool I use already.

Then I had physio in the pm at the hospital and she thinks I have lower back pain caused by being sedentary and sitting a lot (due to the ME) she was nice though and understood, she talked through some simple pilates things I could do such as bridges, in bed while lying down and we talked about how it is difficult with the ME as well and that things like heat can help which I am also using

I then walked back through the park as it was a lovely day and even felt a bit warm!

I collected a stash of gabapentin at the pharmacy on the way back and went to the Co-op, then collapsed at home. This was an unusually active day for me and I have been feeling grotty this evening and have not wanted anything to eat/ dizzy/nauseous/ headachy and generally rubbish, can't even tolerate things like the TV in the other room.

Does anyone else find their appetite goes during PEM? Maybe it's the nausea. maybe it is good in a way as I'm starting to come off Mounjaro and worried about gaining weight especially being sedentary.

Oh, that radio programme about ME was on this morning and DH was there and listened to it which was good. I think he might understand it a bit more now.

Have no plans tomorrow so that is good, except going with DS to the dentist as needed to give permission for x-rays apparently, but that is very close.

Hoping for some more sunny days to come.

@Orangesandlemons77 as above I don't have an ME/CFS diagnosis but I absolutely find I have no appetite and feel nauseous when my energy crashes. Sometimes just the thought of food makes me feel quite repulsed.

Yes, I'm the same. On the CFS course they talked about having snacks such as a banana and I do manage an apple sometimes, but find most stuff makes me feel queasy. I have things like those Huel drinks sometimes, they are ok if chilled but not great, and around 400 cals.

I have heard stuff about this kind of thing being linked - good to hear you are getting some answers and hopefully some help. I am finding I get heavy periods on HRT. Thinking of possibly stopping it because of that but unsure of it might be benefiting me. It's hard when things get complicated isn't it!

My go to is a banana milkshake (just banana and milk) done in the nutribullet. Somehow that always seems ok. It's filling (especially with a few almonds chucked in) and has some nutritional value, so I count that as a win.

Honestly, at my Dad's funeral, there were plenty of folk came for a grand day out it seemed. All sorts of people were there I didn't expect and ones I thought would have been were not. They're funny things funerals. It doesn't really matter what people think. Look after yourself x

Just delurking after dipping in and out of these lovely, supportive, busy threads.

I found myself thinking of y'all when I braved the camping and motorhome show at NEC last week. I'd woken up with mild vertigo but thought sod it I'm going anyway.

It was mostly fine with a bit of planning, not trying to see everything and lots of coffee stops as there are never enough seats just dotted about are there? The main problem was going in vans and motorhomes to have a nose. OK going in but looking down to step out and looking back up made me dizzy.

Anyway, talking of overlapping illnesses I thought some of you may be interested in this. It doesn't include gynae stuff like endometriosis but I think people often have gynae things plus others.

https://www.overlappingillnessalliance.org.uk/

Good morning to all on what promises to be a sunny day, and thankyou so much for your lovely warm welcomes.
I went out for a walk yesterday and then ended up sleeping the afternoon away, but hopefully I can have a full and ' normal' day today, as I hope you all can too.

At my father's funeral i sat on a comfy seat and chatted to his literary executor and my second cousin. I didn't mingle at all. All was well.

@VikingNorthUtsire I didn't mingle at my DB's funeral , but people knew I was not well (just getting over covid). It was really important for me to show my face but I went home straight after the service. My thinking was I would go for as long as I could manage....ie not long! People are so busy chatting at these things.

Sorry to hear about your FIL @VikingNorthUtsire and your worry re the funeral.
I felt similar when we lost my FIL last year as wanted to be able to support my DH and the kids. Plus we were quite close, he was very much like a father to me having lost my own as a child so it was important to pay my respects.
As others have said, I made sure I sat a lot during the day and rested a lot around it. I think the adrenaline did kick in to get me through too. Planning some rest days around it sounds sensible and I hope it goes smoothly.

Oh how lovely a motor home would be! Somewhere to nap when out and about sounds brilliant. I have been looking at caravans online and there are some amazing luxuries! DD1 lived in a static caravan for 3 years during a house renovation, it was rather old and damp. It was quite cosy with a logburner though.

@OdddSox hope you are having another sunny day, it does lift the spirits!