What are you up to today if you have chronic illness? Thread 3

[MewithME]

Link to last thread.

https://www.mumsnet.com/talk/_chat/5406424-what-are-you-up-to-today-if-you-have-chronic-illness-part-2

Can't believe we filled another one.

You can take the credit 😁 Weird recipe from 40 years ago clearly didn't catch on!

@MewithME I also made the random scone based pizza at school! It was really nice.

sorry you are feeling blue, is there anything that’s helpful when you feel like that?

im loathed to ever come off Mounjaro as it has rather neatly fixed my severe ibs. Which was 7 lots of diarrhoea a day for years and years. I take psyllium husk these days which apparently helps with constipation and diarrhoea so I guess if / when I come off I can see if that helps!

Ds2 and I are going to watch the 1% club. I’ve not left the sofa today. I’ve managed to talk to my sister about a very tricky situation with our mum. I’m exhausted just thinking about that and can’t manage to deal with it.

Hmmm...not sure that makes me feel any better! 😄

Im the same with UPF. Awful for pain and fatigue.

sorry your feeling rubbish @MewithME
Hope it helps to know your not alone. I have been feeling rubbish this week and sad about life.

Having all the responsibility for the kids and limited health whilst my ex husband is on his second holiday of the year with his new piece.

I miss living my life and not just surviving. I feel more positive now and working on it but it's hard.

Sending 💐

I quite often feel I'd like to go round life again, but this time without my mistakes. And a better pension!

Bettervits probiotics have sorted my IBS, just expensive. Use buscopan for occasional flare up. DH makes a good pizza base in the bread maker. Very tired and wound up this last week and everything is happening at once. More window shoppers/ time wasters for pups. Whole house needs a thorough deep clean but all I can do is look at it with disgust, don't have the motivation or the energy. Am keeping on top of the day to day stuff. Love to all xx

I’m just exhausted, I’ve done nothing. This weather though with osteoarthritis and psoriatic arthritis is hell; cold and damp. And I miss my dog whom I lost last month after almost 13 years together!

So sorry. I know this pain. I lost one of my labs last year and miss him every day 💐

(((((Gilead))))))

I bought some probiotics a couple of months ago but got the trots almost immediately. Really upset the system, and still not much better weeks after stopping. They were a French brand with good reviews but when I checked back I found a lot of complaints.

It could also be the fatigue I reckon, it always sets off my IBS. Maybe the adrenaline? I think the probiotics make sense but I daren't try any others!

I crashed out on the sofa after DGD visit, when I woke up there was DH asleep in a chair, so we were both shattered!

So sorry @Gilead xx

Probiotics were what the dietitians told me to take. But, they told Me to take them for three months and to ignore any side effects as it takes that long for them to “take” or something and that if it got worse before better it would ride out. I haven’t taken them for ages but I take lots of other bits.

I take a cbd capsule at this time of the evening along with some magnesium 3 in one capsules and find that has cured my restless legs and gives me a nice chilled evening and reasonable sleep. The magnesium is amazing. I have awful feet and legs, before I took it I could be kept awake all night if my feet were touched or sensitised. My mum has the same thing and we both have to be careful not to set our feet off. It’s really annoying and bizarre!

Interesting about the probiotics. I was looking at them yesterday. I don't have IBS symptoms now but I did have terrible symptoms prior to going gluten free. I did the Zoe study though and my gut heath was extremely low.

@FurForksSakewhay magnesium do you take. I'm taking marine magnesium from the naked pharmacy but considering if I need to change it. It does help my restless legs and sleep but I have heard magnesium glycinate is better

I take nutrition geeks magnesium glycinate 3 in 1. It’s glycinate, malate and citrate. It’s my one non negotiable.

Thanks. I will look into those

Can I ask some advice ? Background Crohns for 25 double digit surgeries and stoma bag , stage 4 kidney disease , stroke (small with only some residual physical and cognitive impact thankfully) and last autumn needed a full open surgery hysterectomy for a large ovarian tumour that was borderline - subsequently had bad wound infection and had to deal with open wounds for a couple of months.

I work from home and went back about February and had a couple of months where I felt reasonably well. April I had flu or Covid and I’ve never fully recovered , have been working mainly laying down due to low blood pressure and exhaustion - last week the problems with super low blood pressure came to a head and I fainted a couple of times so have had to stop work for a while as I’m feeling so unwell.

Recently I can’t barely take a few steps without pressure in my chest making me want to vomit and can’t stand still to make a sandwich etc as I’m so weak. Doc is being very slow to refer me to get POTS etc checked and I’m struggling to see a way through this and back to reasonable health.
I have a crossroads really , I can use up my remaining half pay sick leave and try for ill health retirement from civil service or redundancy , retire now at 53 and cover outgoings from savings til I can get work pensions (not massive) at 55 or try to keep on working at the expense of everything else it seems. What would / did you do ? I was so focussed on getting to 55 and then retiring early but I am thinking this may be impossible.

Sorry for the long post , I was told many many years ago that I should come to terms with being unable to work and I have been so determined to prove them wrong but I have no life now apart from work and sleep

Oh god I so relate. Exh has X3 hols a year with his latest women these days. He even goes to the same places we used to. Once texted me from the same hotel we stayed in while with a new gf!

I literally feel like the brood mate who bore his child and raises him alone while exh can just play Dad when he feels like it. No wonder I got ill. Sigh.

I think there's always ups and downs. I'm not the worst I've been... just a bit down in the dumps. It's the pain getting to me I think and feeling a bit alone.

You all help loads though x

@CoastalCalm that sounds incredibly hard. I'm not sure I have any sensible advice just now., as I am a bit too tired to really process your situation. Perhaps go sick while you recover enough to make big decision.

So sorry though, what a lot you have been through.

@TeaAndStrumpets oh wow .. about probiotics. I've been taking them as I was feeling a bit out of whack but I wonder if I've had side effects?

@CoastalCalm have they done bloods and ruled out anaemia and all the obvious stuff?

For POTS electrolytes and keeping really well hydrated is helpful.

Why don’t they want to refer? I’d be insisting they do something, they can give you medication to improve your low blood pressure.

Can you use a health watch to keep a record of your heart rate and symptoms to show to the GP? I use tachymon on my Apple Watch and you can download the results I think, or at least take photos of jt.

With work I’d hang on as long as you can and push hard for the GP to do everything they can to help you.

It sounds like you’ve had a tough and exhausting time with your health, but there could be medication and lifestyle things that can make life at least a little better than this.

Hi , yes all my bloods at renal review a month ago were at normal for me levels , only thing was folate a little low. I’ve been taking loads of electrolytes and take salt tablets for kidney issues and my blood pressure is at best 80/ 65 this last two weeks and often a lot lower

The GP has been pretty dismissive for weeks saying all down to kidney function being lower after the would infection and surgery but I’ve had to insist this isn’t the case and my renal doctor backs that up. I’m used to having to be pushy but it’s exhausting and when you’ve got chronic illnesses already it’s like a get out of jail free card for them to just blame that.

He said two weeks ago he was referring my for neck ultrasound as my glands have been sore for months and then to a blood pressure clinic where they can look at POTS / Long Covid / CFS etc - chased him last week after fainting and got a reply saying they’d be in touch when a routine appt was available.

Family pressuring me to go to A&E but they don’t appreciate that they won’t do the tests needed to c change anything just fill me with fluid and send me home and I’m not dehydrated at all and keeping fluid balance good with stoma etc.

So sorry you are feeling awful @CoastalCalm . I don't know enough to give advice but your symptoms could easily fit Long Covid , CFS/ME, and /or POTS, so you really need some medical investigations. Your Some MNetters on this thread have Long Covid so would maybe give you an idea of what treatment if any is available. CFS/ME is a tricky one to treat (seems to be mostly self-management) POTS I think can be medicated but I have no knowledge. Time for your GP to get her finger out. I would chivvy her for your referral.

You really are at a crossroads re early retirement, will the two years make a huge difference? You have to put your health front and centre but obviously being broke is stressful too.

Best of luck, we're all here if you want to chew things over.

@CoastalCalm sorry see you've had a comprehensive reply from @FurForksSake . I don't know why I assumed your GP was female, probably because mine was like yours!

Can you check what your b12 / folate / ferritin / serum iron are and plug the numbers into ChatGPT? It can often tell you where your numbers are in range and what they mean.

I think if you keep fainting ylu will have to go to a&e as you could risk hurting yourself.

I would keep pushing the gp for referrals. If you can afford it maybe look at going private for some tests / answers? I don’t really know but I imagine the nhs are very slow.

I don't think they suit everyone. Mind you I'm allergic to a lot of stuff so could have been an ingredient.