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.

My cats also.

Thanks @TodayIsatrickyone !

I’ve been offered nerve block injections (two, L4 and L5. I’m taking time to research as success isn’t always guaranteed. If it did work for any period that would at least control double sciatica!

Sorry, just found this out, the hospital need physio to refer, do you find it helpful?

I've just asked to cancel my gym membership, it is quite expensive and I'm hardly using it.

Quite a quiet day here, did a bit of laundry, considering dying my hair but putting it off. It is getting a bit grey around the edges.

Oh that sounds interesting, hope it helps you. Did you have an MRI scan to find the areas needing scans please?

I don't know if I should be here. Is peri menopause a chronic illness? It's starting to feel like it.

I've got really bad joint pain, memory fog and my social battery is flat. I went our for 4 hours on Friday, and 2 hours on Saturday, and I didn't recover mentally or physically till the following Saturday.

Today I've got period pain that's made me cry and feel sick. I can barely function.

I'm laying on the sofa feeling really unwell. I'm maxed out on hrt too. Maybe it's the audhd that is making it all worse. Sending love to everyone who is struggling.

Yes full spine MRI, I’ve had lung cancer so they checked for metastases and looked at she whole spine. No metastes which is good, but spondylitis, and bone spurs have damaged L4/5. Unfortunately this means that every so often they meet-up with the sciatic nerve and if gets trapped!
I also have psoriatic arthritis.

Oh, that does sound painful. Glad things were OK with the cancer. I hope the injections work OK, I might try and get an MRI too as having some back pain.

@Orangesandlemons77 I’m having to pay for it privately, once a week. I’m hoping to switch over to being a private hire user which is £50 a time and go twice a month when I go back to work.

I have really bad hyper mobility and probably Elhers danlos. My therapist today was explaining that the water holds my body together allowing me to feel things more and to move better. I love it, it’s 35 degrees and I’m almost completely pain free for the time in the water.

if ylu can get the nhs to refer you, do it. Ive had a reduction in pain but more importantly ive built some strength and mobility before surgery on Friday.

I reckon so! I am peri as well, it is not easy. Welcome

Thanks for the reply FurForksSake

I might be able to if a local physio at the hospital refers me, there is a hydrotherapy pool there. I used it in pregnancy and it was fab

Glad to hear it's helping you too.

Thank you for the validation. It's utterly wretched

@SwordToFlamethrower what a good question! I don't think you can call it a chronic illness but it can sure feel like one of you are not managing the symptoms and it has a big impact on actual chronic illnesses too.

It actually was hard to unravel whether I had MEcfs or if it was 'just' peri to start with.

Anyway, if you're struggling..do join.

I am sure peri must be hard with Audhd too. Sensory issues will make the pain hard to cope with i imagine?

I've come home from work early as my son had to be picked up. He's in agony with a sore neck. No idea why. Must have slept funny. He is autistic though and he's very upset by pain. He finds it very distressing.

Anyway I am happy for the excuse of being home early. I'm shattered.

I too have EDS, I’m a wheelchair user who has frequent subluxations. Four years ago I had an ileostomy, the area around my stoma has never quite healed properly. Lee an eye on any wounds, including surgical ones, it’s quite common for us to have trouble with healing.

@Gileadall my scars from surgeries are horrendous and I’ve had two incidents of major post surgical infections as theyve not healed properly. I’m more worried about that than the third hip surgery!

both my shoulders are being very naughty, left subluxed last week and something is popping in and out on the right one now, bloody thing!

My crumbling spine isn’t helping matters.

I’m waiting for nhs rheumatology to see what they’ll diagnose, might go private. I’ve also got POTS symptoms that I’m keeping under my hat until I’ve had my hip sorted. My sister has a diagnosis of POTS and I suspect would get an EDS diagnosis. One physio told me I’m too short to be EDS. The rest of the women in my family are tall, I stopped growing at 11 having been the tallest person in my class!

Thanks @Gilead and I’m sorry to hear about your struggles. My dad had a stoma for some time as he had to have several feet of bowel removed. I’m lucky to only have ibs/d and diverticulitis.

Day of training today at a different site, which was very tiring and a difficult drive home.

Still I'm home now, in bed with a cuppa and a cold sausage sandwich. Living the dream ☺️

Normality is resumed tomorrow.

Furforkssake
ohysio is wrong, my dad was 5’9”
I am 5’4”
Twin one 5’7”
Twin two 5’1
im 66 and got my dx at ten. See if you can find a good rheumatologist. Physios cannot and should not be making diagnoses.

I’ve been on the rheumatology waiting list for nine months. They just messaged to ask if I wanted to keep waiting.

I grew up thinking I was just very clumsy and with every limb having had multiple, multiple sprains for no real reason. My kneecaps subluxed and my right hip has been popping in and out all my life. The hip is apparently due to dysplasia. Last time a physio did the Beignton test I got 8/9. I’d happily accept a diagnosis of hyper mobility syndrome or fibromyalgia, work find me hard as I don’t have an overall diagnosis to explain all my difficulties. My son has a diagnosis of “severe global joint laxity” as he was only 6 or 7 when he was seen by paeds, OT and physios. The paediatrician said then he likely had EDS but he was too young to diagnose. He has heart scans every 24 months for other reasons so she was happy with that.

@FurForksSake @Gilead sorry to read about everything you are contending with.

We were away last week (lovely) and took the opportunity to spend the last weekend with some old friends who live the the area. Big mistake (although so nice to see them) - 36 hours of being "on", and I don't feel like I knew them well enough to be honest about how hard it was to do the lovely walk they planned, or stay up late chatting.

Yesterday was tough. Today I'm not working so I can rest. I don't have any diagnosis that explains my fatigue, and I struggle to find the right balance between sensible pacing and avoiding an "I can't" mindset (I can be a bit overly negative at times).

Hope everyone has a restful and healthy day.

I slept badly (nervous girlcat deciding she needed reassuring cuddles didn't help- but I love her!) and gave a headache now.
Still, nothing important to do until school run time this afternoon. And I've arranged a medication review with my GP so that's a box ticked.

My rheumatologists are OK, but somewhat dismissive of the daily effects of my condition and admit there's no magic pill to cure. It's a case of do what you can for discrete symptoms.

Hope everyone has the best day possible.

@FurForksSake
@Gilead

I agree that sounds like a lot to contend with. I was thinking about you both last night. ((careful hugs))

@VikingNorthUtsire

You are trying to appear normal! Always a mistake but completely understandable. The fear of people not understanding and, ridiculous as it seems, feeling almost embarrassed to be a nuisance.

Hope everyone has a decent day!

Absolutely!

I am closely monitoring my heart rate and can keep it under 100 if I do everything in short bursts. Wash rest, teeth rest, dress rest. Not ready for any sustained effort, but my oxygen levels have improved in the last week so I'm really pleased. Every time I have a crash I think I've really done it now! It does improve up to a very low level. I can't imagine ever going on a long walk or standing up chatting at a party....haven't been able to for years. So I am grateful for anything.