What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

Understand the medical anxiety bit and friends etc, I don't share a lot anymore as I'm sure they think I'm hypochondriac.

My worries extend to the rest of the family, DH had a recent high cholesterol result and I got wound up wondering if the DCs had inherited this and needed testing too, also one of the DCs didn't want a meningitis jab before starting uni too that was a worry too.

I wonder if when health issues hit, it makes you more sensitive to other health worries too, as we know how important it can be to try and stay on top of things.

Tired again today, as usual, can hear the builders banging around in the flat downstairs. I have some surveys to do on this site Prolific which are actually quite interesting but not sure if I have the energy today.

Was thinking of linking the PayPal with DS's as a bit of money for him as he needs some clothes. I'll see how things go.

Feeling a bit less stressed and moody though. I tried. reducing my fluoxetine recently but have restated it. That was a health worry too, I read it can be linked with a higher fracture risk and started worrying about that! I have reasoned that I think I need it right now and will worry about that in the future. Maybe I can mitigate it by doing things like having calcium for example.

There is always something. It is daft really as don't want to live forever, just avoid anything else nasty if you know what I mean.

@Orangesandlemons77 that is it exactly, I worry about every little symptom in my family, more so than myself.
I have osteoporosis - not helped by years of food allergies and malabsorption - but I pretty well blank it out. I take one tablet a month and get on with my day. I think the main thing is to take practical measures going forward. For example don't plug a phone into an extension socket to recharge! I went full length doing this the other month, looked like I'd been battered on face and knee, but didn't break anything. I am making sure there aren't many hard slippery surfaces in our new house, obviously a broken hip is very bad so trying to avoid one!

Yes we are none of us going to live forever. I did my Waitrose Christmas order the other day and thought at my age I wonder if I'll still be here at Christmas? Told DH and said I'd better order lots of ready meals in case he's on his own....Sorry, we do laugh about silly things like this!!

I'm really interested in those of you saying you get full body jerks.
I've had a really stressful year or so and these have really ramped up. I didn't think to associate this with stress/doing too much but it makes sense.

Yes, the worse the post exertional malaise, the worse the jerks.

Another worrier here, it’s not necessarily health related for me and I guess I’ve always been prone to worrying somewhat but not to this degree. It definitely ramped up once ME/ CFS hit and seems to be getting worse not better. If I wake in the night, I can lie there getting anxious about everything and anything. I now worry about how much I worry!

I think my MEcfs has made me worry less in some ways. Menopause is the thing that makes me feel anxious.

The ME makes me shrug and say no more. I know I cannot do certain things so I have worked hard on accepting it. It's hard when it's what I want to do...but if it's stuff I don't really want to do and feel put under pressure to do...I feel empowered to say no more. I was a people pleaser. I've been working to get rid of that for a long while. Some progress has been made.

It's good to hear I'm not the only over-thinker here!

The truth is, I have too much time now - if I was up and about like I used to be, I wouldn't have the time to worry and would also be doing things that help manage mental health.

I'm trying to cultivate some non-energy-sucking hobbies.

@TeaAndStrumpets
What have you been diagnosed with if you don't mind me asking? I've been diagnosed with fibromyalgia and hypermobility syndrome but of course it is always difficult to know if something else has been missed.

Work today - still tired from yesterday. Forgot lunchtime painkillers as was in a rush. Less steps though and no stairs - result.

Now home in bed with (decaf) tea, DH cooking.

Have a restful evening everyone 😴

Meant to add that my anxiety is dealt with by a course of ACT through my LC clinic and antidepressants from my GP. They help with my nerve pain too. Oh, and HRT. I am a walking pharmacy ...

Absolutely, you’ve hit the nail on the head re too much time to think! I’m the same in that I’m stuck in the house so much whereas previously I was perhaps too busy to over think quite so much. Distraction helps, audio books, puzzles, gentle TV etc but in the middle of the night I don’t want to disturb DH!

Hi @EducatingArti I have CFS/ME, diagnosed by a consultant endocrinologist.

He was so helpful with life style advice, particularly about resting. He told me to have a nap or at least lie down every afternoon, not sitting up but actually lying flat. He told me that lying down helps lower cortisol levels more efficiently. Also get out in the sunshine. He told my GP I'd benefit from a small dose of levothyroxine, and recommended I took D3 and B12 supplements.

That was it, really. No quick fix but tips for management.

BTW I am forever being offered statins, but he looked at my readings and said no need!

@TeaAndStrumpets isn't it crazy there are no consistent experts who do diagnosis? I was diagnosed by a consultant in neuropsychiatry!

It's sad isn't it? So many people must struggle on without a diagnosis.

I got mine through some sort of sixth sense. Found my own clinic. Got GP to do referral after being told there was nothing. Got the diagnosis after 2 years. Recently found out I was one of only fifty that had been contracted out to another area for my county.

If I did it now ..nada.

@TeaAndStrumpets that's really interesting about lying flat lowering cortisol.

If I nap in the day it's always on the sofa and quite upright. I have always though it best not to nap in the bedroom as it's too quiet and I might sleep for hours!

@didntlikethis I also do jigsaws as a quiet, relaxing hobby.

Yes I tend to nap sitting up too, even knowing lying down would be better - usually because it has taken me unawares!

The quandary for me is that I know I must use it or lose it so I need to get a good walk in. Then get some class of a dinner on. Bar that I seem to be done. Unable to do anything more.
I retire to bed early as I need the peace and quiet as much as the soft comfort of bed.
I can see life becoming very small through pain.
Last night was very sore.

I need to return to my doctor and ask how often I can reasonably take painkillers. I don't want to go back on steroids as I felt awful and my hair started falling out.

I hate how cranky pain makes me. I really feel my inner pure bitch is emerging!😁

If I'm cooking I usually do the prep in the morning once the first lot of painkillers have kicked in. We have to eat, and fresh food whenever possible is a priority. After that it's a case of getting in as much walking as I can manage, which usually ain't much. Twenty minutes at a time on a good day.But as you say, @Greenvases , it's use it or lose it.
Haven't managed either today yet, as it's a hair wash day, and getting my hair into a semi acceptable state afterwards fucks me up. What a rich and varied life.
I feel bad about the self-pity, however sarcastically I frame it. Things are a lot worse for a lot of people. They've been a lot worse for me.

Oh hair, I have been planning on dyeing mine with a home kit for weeks now, just the hassle of it! I will try one day as it is going quite grey now.

Well, I had my video appt with the chronic fatigue doctor and have the diagnosis now, she also wants me to do a sleep study for 'central sleep apnea' as I sometimes wake up in a panic with heart racing- I hoped to avoid such a study (was referred for one previously but I thought with weight loss / mounjaro snoring had stopped and didn't do it in the end)

I did wonder therefore they might want to do that first and would be possible years of waiting but they did give the diagnosis which was good, they are sending me on a six week course if I can manage it, which starts in November.

So we'll see how that goes. She seemed nice. Going to try and rest now. Have to go to the pharmacy later to pick up meds, luckily it is just 5 minutes away.

Hoping for a good day for all

Afternoon all, need to dye my grey hair also. On leave from today till Monday to clean downstairs and shampoo carpets etc. Not achieved much so far but do feel nice and relaxed after feeling very tense and sweaty stressy shouty for days. Late night with MIL, now started ripping her coverless duvets at the seams and pulling the stuffing out. Thinking maybe a flat sheet and a washable hospital blanket. We've got a waterproof duvet but it's too hot and sweaty. Needs to be washable for the incontinence. Just when I think I've solved a problem with her she thwarts it. Going to bath one pup litter with DH and get some photos done for the ad. More washing also. Love to everyone.

I really feel for people caring for elderly relatives, DC with autism, etc I struggle enough with teens and their drama but at least don't need e.g. personal care.

Stressybetty that sounds really hard. I remember my elderly dad with dementia refused to wear incontinence pants which just made life much more difficult all round. I hope there is a solution, sounds frustrating.

My MIL is elderly and likes being taken out, but it also not very understanding of me and my needs, think I will try not to get too involved if care is needed. She has 3 other children as well (not that I mean it's the children's job to do that but anyway, arrange stuff I guess)

The lady in the appt today was saying about communication and making choices for which activities to do when they can be tiring, and they would cover stuff like that in this course. And it's not always easy to say no.

Leave care to her children and focus on yourself.
Caring duties is a burden that I would be very slow to add to what you are dealing with, particularly when it isn't your parent and there are her own children around.

Thanks. Yes I don't mind going for coffee sometimes but even that can be draining as she can be negative, and needs recovery from! And if I don't go I will get told it is 'such a shame'

She also told me about my illness 'this has been going on a long time, what are you going to do about it?" well, with some things it is more about managing things isn't it.

Oddly I have just been offered an ENT appt at the hospital on Sunday morning. Didn't know they did Sundays. She said something about how they have been asked to fill them..

So your illness is clearly an inconvenience for her?
Back away and leave her to her son.
Goid luck with your appointment.