What are you up to today if you have a chronic illness Thread 8.. plodding on gently...

[MewithME]

Linky to last thread 🧵 https://www.mumsnet.com/talk/_chat/5506529-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-7

Let's be good and use those last posts up first. Nice to be tidy here if not in my house! 😉

I’m getting very down. The pain is so tough. I keep telling myself it’s got to pass but when these muscle spasms hit, it’s so hard. I also just sobbed last night as it’s been weeks of this now and it just feels too much. There’s a level of adjustment as I’ve changed meds but yeah, it’s awful.

Surprisingly I did manage to sleep quite well last night in the end so today feels easier. I’ve got an osteopath appointment later and I’m hoping that will help alongside everything else. I don’t really feel strong enough to get there but I have to try.

Hope everyone has a restful day

I know I think part of my frustration is because I've had to stop seeing my osteopath for weeks due the the two cataract surgeries. The first one I felt a bit seasick due to my eyes being odd but also my neck went into spasm so I had vertigo for a few days. The second operation went on for about twice as long as the first one and the neck spasm from lying still in an awkward position is still awful nearly two weeks later. I can't get comfortable. Just a lot of physical and mental strain, on top of rolling PEM.

Hope you get seen soon and get some relief. I swear my osteopath is a magician!

Thinking of you all day Fuzzy. Xx

I'm sending love to all of you...even in your own difficulties, you have time to support me.
Thank you, lovely people...and may you all have a positive day. X

And a strong to everyone who needs them

It’s a lot @TeaAndStrumpets is’t it 😕 We sound similar with the muscle spasms and just not being able to get comfortable. When it goes on so long with no relief, it’s so hard and you’ve had a lot going on with 2 ops lately, sending hugs. Hope you can get to the magic osteopath soon.

I think this is partly a month of being mostly in bed, very uncomfortable positions in the hospital, multiple scans needing to lie flat and still which I struggled to do and a hell of a lot of stress and worry causing tension in the neck/ shoulder but I thought it would be easing by now.

I’m left handed too and using my left arm is weaker and hurts to use since the stroke so that’s frustrating.
I really don’t know if I’m going to cope even getting to the osteopath today but I’m desperate so I need to try. I’ll be grateful for any small bit of relief. She’s helped in the past so fingers crossed. 🤞

Yes it's odd the little things that can set it off. I find even sitting at the table without the chair being properly pushed in, ie perching and leaning over a little bit, sets off the pain in my left shoulder/neck. I must be like a human corkscrew! Another funny thing (well not funny) Previously I couldn't really see my face in the bathroom mirror so I used a handmirror to examine eyebrows etc. Now I can see I've been leaning forward over the basin and tilting my head back which has set me off again! Also putting eyedrops in every 4 hours is painful for a stiff neck.

Hope you get some relief!

very uncomfortable positions in the hospital, multiple scans needing to lie flat and still which I struggled to do

Are we twins ? I can’t BEAR hospital beds or get comfortable last time I was in I just lay there in an awkward position whilst I got told off by nurses for not being able to get comfortable and go to sleep. Equally I hate lying flat on an MRI or other such scan because I feel paralysed and helpless!

Oh it's just awful. It needs recovery time in itself!

We really need a new mattress but I'm worried about starting over with a new one. Ours was quite cheap but it seems to suit me. I remember the late Queen had someone who broke in her shoes for her, not sure I'd like such a service for mattresses though!

Definitely @TeaAndStrumpets this is why I despise going to A &E even when it’s necessary because I end up in even worse pain once my lower back checks out from being forced into an unnatural position (for me) for an extended period of time on a trolley - hellishly uncomfortable

I guess it all makes sense @ValleyClouds that being in these uncomfortable positions for so long would lead to acute muscle pain and spasms.
It’s the sensory overload of A & E for me too alongside the physical discomfort. It becomes so acute I literally can’t form sentences. Then the body goes into spasm and I can’t weight bear or sit up. One nurse rolled her eyes at me, saying I’d got into the wheelchair so I must be able to get out. I think I’m still coming to terms with how utterly horrendous that week in hospital was.

So glad to have a space where others get it but sad youre all going through it too.

What I struggle with most is diminishing ability, can’t do things I took for granted even 5 years ago

Afternoon all.
@FuzzyPuffling hope all has gone well for your husband.
Sorry to hear quite a few are suffering this week. Sending sympathy.
Take care in the forecast heatwave. Good excuse for ice cream & lollies 😁.

Has anyone had this problem?

I was in hospital last year for an operation and all my meds were repeatedly changed back and forth, so I had to come off blister packs. When the time came for me to go back to blister packs the pharmacy said NO that they were trying to cut back on blister packs and weren’t putting anyone on the list anymore, it didn’t seem to matter that I had only temporarily come off and now I’m back and forth to the pharmacy constantly as everything seems to be running out at different rates! It’s so frustrating

DH is ok! Sending him.for an MRI but it's belt and braces- the consultant thinks there's nothing to worry about.
Having held it together for over a week, I could cry with relief. We're having a curry to celebrate!

Thank you for all your good thoughts and wishes. It means such a lot.

Aw @FuzzyPuffling you have a cry. You've been holding your breath for a week!

Glad to hear FuzzyPuffling

DH had to go for a scan yesterday and that is Ok also, a worry isn't it?

It's really warm here today. Made it out to the local community shop for a few groceries and also had the shopping delivery so we're all stocked up!

I like the community shop as usually get some quite random things there. Although even that has gone up in price, used to be £5 for a basket, now £7.50!

Got a 5 on Visible today. Quite unusual, and can't say I feel better for it. Hoping for a nice evening for all

I am at my event. Hasn't even officially opened yet and I've already blown my budget for pacing and heart rate isn't coming down.

We’re having a curry to celebrate

Ooo tell me what you’re having ! So jealous!

Glad that your DH is ok!

Great news @FuzzyPuffling what a relief!

Chicken korma, tikka masala, rice, bhajis and naan.

It a Morrisons special! Probably not very authentic but yummy.

I love a Naan!

Thats brilliant news @FuzzyPuffling enjoy the curry!

@MewithME good luck, hope it goes well.

@ValleyClouds yes I have had a similar experience with my DM, I asked that her meds be put in blister packs because she was getting a bit confused. I was told that the pharmacist wasn't doing any more blister packs as they took too long to put up. DM could go on a waiting list. I asked that they put this in writing so if she gets her meds wrong and she becomes unwell they can be held accountable for this decision. They changed their minds.

I'm not usually stroppy, but it made me so angry that there was a simple solution, but it was being withheld due to an arbitrary decision by the pharmacist, not according to patient needs.

Yes @danglethedingleI have boxes and boxes now, some the same med at different dosages, it’s a disaster waiting to happen and it’s at the whim of the pharmacy 🤬

Fabulous news @FuzzyPuffling Enjoy your curry!

Glad your DH also had positive news @Orangesandlemons77

@MewithME Blimey that’s so hard when you know you’re running on empty yet need to keep going. Be kind to yourself thid evening and any chance of WFH tomorrow?

@ValleyClouds Yes I also had blister packs at my GPs request as I’d muddled them a few times. My pharmacy stopped sending them in Covid and told me they didn’t have the staff anymore. DH and I usually sit and sort them for the week but yes I understand your frustration.