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.

@Stressybetty I'm glad you have a good dentist! I think they are obliged to refer just to be on the safe side. DH had a mystery lump on his gum that disappeared before his hospital appointment! My younger brother had the same...just a false alarm. Good that you are in the system and can get it resolved quickly!

@TeaAndStrumpets thank you, that's very comforting ❤️

No, DWP doing a capacity to work thing. She was exceptionally slow and considering the assessors are said to be qualified health professionals she was not very clued up at all about anything. They need to warn you it can take hours. I think when they phoned to confirm the appointment I was told 20 minutes to over an hour depending on health conditions. I think I should score enough points to be deemed to have a low capacity for work. I’m a carer for my mum but it’s caused autistic burnout and I’m signed off sick for 3 months by the GP. There’s no one else to look after my mum so I’m doing so much despite carers going in.

@AuADHD That sounds so difficult. I hope the assessment goes in your favour.

@Stressybetty its understandable you’re worried but good your dentist is on the ball and hopefully you won’t have too long to wait for the referral. How many pups do you still have left? Great that they all seem to be finding homes.

@AuADHD sounds so difficult for you. I’m still crashed after my PIP assessment on Monday which was 1.5 hours long but yours sounds crazy! I hope it’s successful as these things are so stressful.

Today is supposed to be a rest day and I need it, but I have acupuncture this morning and then my parents are coming over for a cuppa this afternoon. What I could really do with is a quiet day in bed!

I have not taken any painkillers this morning so that my acupuncturist can assess me properly. She sticks needles in my lower back which really helps my thighs. Hopefully she can help a little with my fatigue too. I'll swing past M&S on my way home and get a treat for this afternoon.

Have a good day everyone, doing (or not doing) whatever you need to 😊

Today I had promised myself a shower but had a racing heart again in the night. My heart rate has slowed a lot during the day but my adrenaline level is obviously still too high. I know it will take a while to climb back to my base line.

We've got visitors in 10 days and I am so desperate to see them I am going to rest like crazy to build up some energy. I haven't seen my friend since her most recent cancer op. She is quite amazing.

I always cut DH's hair and am dying to give him a trim. It's so annoying he has only receded a bit, his hair is wild! Don't think I can stand for even 10 minutes at the moment, so will have to put up with looking at him lol.

@Swanhilde I used to see an acupuncturist for gynae issues. She always told me I had very low Qi? Chi ? however you say it. She told me to have lots of hot food. I do have rice soup when I'm low in energy, it is so easy to digest.

@Swanhilde hope the acupuncture helps today, I had it years ago for migraines and found it really helpful but had to travel to the next town which offset the benefits rather.

@TeaAndStrumpets sorry the racing heart is still happening, not pleasant especially at night. Hope you can manage to see your friend soon and definitely a lovely thing to rest up for!

Still not good here really and wish the pain would ease a bit but just given in to needing to totally rest as I really want to be well enough to enjoy my boys visit this weekend. Currently under my heated throw resting in bed. I tried to get up, dressed but had to lie down again after having a quick wash and brushing my teeth!
DH has walked dippy dog so she’s happily back snoozing with me. It’s coming up to 2 months since we first fostered her and even though it’s been challenging at times, she is such a little sweetheart and I can’t imagine her not being by my side now.

How are you doing *MEwithME not heard from you in a little while, hope you are Ok.

Just had the Ocado delivery here and putting it away along with coffee breaks! Doing Ok but helped along with some co-codomol

Thanks @VikingNorthUtsire I find it very relaxing and therapeutic. She's needled my back and asked that I let her know tomorrow if it's had an effect. She's also advised that I contact my GP as it could be a nerve issue in my back.

It's so easy to attribute everything to LC that you forget that other things can go wrong and there may be a treatable physical cause to our issues. Anyway I've sent in an online request so we'll see if anything comes of it ...

Luxury hot cross buns from M&S 😋 Refuse to buy mince pies before December though I may have bought advent calendars for the (grown-up) kids 🎄

Hello 👋🏻

I'm not managing to keep up with the thread. I think it's lovely more people have joined but it's made it busier and I've been so tired at night, I've not been able to process where people are.

Thank you for checking in. That's so kind and it means a lot.

I'm ok. Work is very high pressure at the moment. Funny how they can get rid of very senior staff and reallocate responsibility to people like me for zero money isn't it? 🙈

I had a very full on day yesterday and I know my body is not in the least bit happy. I'm slipping into old habits of that adrenaline high when I know I can power through and get stuff done.... But it's so bad for me.

I will be good this weekend as much as I can. Though I have an eye test. I am sure I will need new glasses again. They're getting so much worse.

How are you @Orangesandlemons77 and everyone?

You know I do wonder if I need to speak to someone more specialist than my trusted long term counsellor. I think I might have complex PTSD from trauma. I'm sure trauma contributed to my MEcfs.

I cry very very easily when anyone is kind to me. @Orangesandlemons77 being so sweet to check in has me in floods of tears right now. How silly.

Hope you feel better soon @MewithME You know crying releases/expels stress hormones in the tears, so maybe a little cry will relieve some of the pressure. A stiff upper lip is all very well but...
The situation at work sounds awful, you have been imposed upon by the sound of it. Definitely ask for more help if you need it, whether therapy or work.
Don't post if you're not up to it! But it would be nice to hear from you when you can manage. Xx

Aw @MewithME Be kind to yourself, work sounds tricky and no one expects you or anyone to keep up with the thread.
I also can cry if people are kind to me so I understand. Ive noticed too when my body is so exhausted, I do feel like crying more often. I’m trying not to cry today actually as I don’t want to exhaust myself any more if that makes any sense!

But @TeaAndStrumpets is right, sometimes it’s probably better to just have a bit of a cry!

@TodayIsatrickyone it does make sense. I can keep it in to keep going. Because I'm alone with my son most of the time, I try not to cry too much around him. I mean I do cry in front of him but I don't want him to be miserable with me or worry. But yes perhaps you and @TeaAndStrumpets are right and I could do with a good cry.

I feel exhausted today after yesterday. I have so much work to do and it's all deadlines so I can't just not do it.

I'm at home today at least. Having a lie down right now.

@MewithME it sounds like a different type of therapy might be helpful.

I managed to sublux my shoulder in the night and it’s so painful today. I’ve been to physio for my hip and he’s given me some exercise for my shoulder. I’ll be on crutches from next Friday so it’s awful timing.

@MewithME I'm so sorry that work is so tough right now 💐 Is your line manager good? Can you let them know that the current workload is making you unwell?

Huge hugs, I am no expert but seen a lot of links between trauma and chronic illness. Maybe ask your current therapist if they can recommend someone?

I've got some kind of PTSD too MEwithME mine is from medical trauma / life saving surgery but also wonder about CPTSD as well, my family was pretty dysfunctional growing up.

Have you looked at the website Out of the Fog, and Out of the Storm, online they might help. the NHS referred me to talking therapies but when the referral came through it said something about high intensity CBT for hour long sessions so I cancelled it, thought I can't face that right now, either the energy and also I have done CBT before.

I wonder about some kind of general counselling, but wondered again about time / energy and cost as well. I can imagine it might feel the same for you, especially with work etc but maybe in future that might be helpful.

It must be really challenging keeping it all going with your work and son, and you need / deserve someone to offload to as well. You always can on here, or PM me if you want. Kind thoughts.

I had a psoriatic arthritis and tenosynovitis diagnosis last year, three drugs later o am now taking biologics and my inflammatory pain seems to have lessened at last! However, it seems from discussions with my rheumy specialist nurse this week and GP today that I may be about to be diagnosed with fibromyalgia, the pain is elevated after the PsA pain is subsiding … starting amitryptiline tomorrow
oh and just to make matters worse I managed to get deep heat on some of my psoriasis … my skin feels like it’s on fire 😱

@chunkyBoo Ouch that must have stung! Hope you can get some help soon. There are several people dealing with pain posting on this thread. It must be very frustrating to add another diagnosis.

I am so sick of my scraggy lurid dressing gown. I've seen too much of it lately. Still haven't managed a shower this week. Maybe tomorrow...

Anyway I just found a half price Sea Salt one in their eBay shop so that's been ordered!

Sea salt have an eBay shop? I’ve just bought a new robe and haven’t had the energy to try it yet. It’s a zip up once from next! My current one is at least a decade old and no longer has a belt. I think it was from Tesco.

I've just found this thread, can I join please? I have a heart condition that causes fatigue, breathlessness and pain, and arthritis. I took early retirement 5 years ago when it all became a bit much.

I now live very frugally, simply and happily with DH. I have learned I have to pace myself, and sometimes just have a few days off.

But today I have had a brilliant day, I have made lunch, done a bit of ironing and run some errands in the town. And its nearly 10:30 and I am still awake! I have been in pyjamas since 9:00, and had a sleep after lunch, but that is still a win.