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.

Could anyone please help me with pep talk? My health condition and the lack of exercise due to PEM means that I have stiffened up physically significantly. Which won’t be good long term. I know I need to try flexibility exercise.

I guess it would be yoga but I am shying away from doing it, I think I’m afraid of how it will feel to be so unable to move in a class with others. Well- lots of reasons. I hate showing my lack of physical ability and being conspicuous for it. I’m afraid of the PEM consequences of doing it and afraid of the financial cost. I don’t want a teacher taking me aside for a special chat about what’s going on healthwise because I don’t have a neat diagnosis that I can reel off to them and they’re not doctors and I don’t want to talk about it. I have always found doing yoga really boring. I don’t like being quiet or what feels like passive in my mind for ages. I feel sick whenever I have to bend over and lower my head. My wrists hurt if I put weight on them. I am good at putting off things I am anxious about. ..: I can find a zillion reasons against it!

So far, I can’t trust myself to do it alone at home. Maybe that’s the place to start though. I’m great at NOT setting aside time consciously to do things just for me that I feel
anxious about, or have an aversion to. I’ll do something useful for someone else to fill up the time whether I wanted to do that thing or not. Can someone please tell me to get over myself? I don’t want to lose any more function or be a burden to my DC in future any more than I already am.

I’d recommend an assessment with a private physio to set you some Pilates type mobilisation exercises to do at home. I’d also massive recommend hydrotherapy, or even just finding a good local pool and doing some very gentle stretches and walking in the water

I do not like yoga, I’m very hyper mobile with knackered hips and spine and I’ve been not a fan for a long time.

What I do like is Pilates. There are lots of videos on YouTube that are gentle, chair based or for older adults (in 42 and have often gone for these as a starting point).

obviously you need to listen to your body and work in your energy envelope.

Little bits of exercise that don’t trigger a crash will be better than a yoga class that leaves you in a flare for days.

@FishFlaked don't do a class if you don't want to... I did yoga with Adrienne on YouTube. I haven't done it for a while but have been thinking I might do some very gentle yoga again. She is v sweet and I love her dog!

Not sure what the answer is to making you do it at home though. Sounds like a bit of a mental block. Sometimes we have to train ourselves to do things. Could you set a reminder on Alexa or something?

X-posted with @FurForksSake. Listen to her @FishFlaked ... That sounds very good advice to me. 😊

Thank you that hadn’t even occurred to me FurForksSake

Hi @FishFlaked have a look at Suzy Bolt on YouTube. She has long covid so specialises in yoga that won't trigger PEM. There are courses you can pay for and videos for free.

I have been discharged by my LC physios twice now because even the gentlest of their exercise programmes gives me PEM. Anything in fact that moves my thighs or arms! But I have one seated 'salute' routine I do in the mornings (I got from the ENO opera breathing course) and a seated leg routine for the evenings from the physio. Both very short, but I hope enough to keep my muscles moving enough whilst I cannot exercise more.

Good luck 🤞

Thank you and yes definitely a mental block is happening MewithME.
If this helps to remind you to restart doing a bit of yoga at home then that is great as well.
I can see that Adriene has a ‘Yoga for Sick Recovery’ series so I might try some of that as the nearest restorative looking option. Thanks.

Thank you that looks really interesting Swanhilde I will look into that as well. I absolutely find that with PEM too- lifting my arms up makes me feel specifically awful- like hanging out washing on a line or changing bed clothes. Washing hair standing up in the shower was a no no for a long time too. Wishing you all the best.

I've just made a Yorkshire pudding batter for lunch and have had to come back to bed!

All I did was mix it, DH did the whisking! You'd think I'd run a 5k 🤣

I'm not sure if I am well enough but might try when I'm doing better. I have MEcfs and during the week, rarely have anything left energy wise after work and looking after my son.

I keep thinking ahead to a time when maybe DS will leave home and I can scale back work. I am hopeful this might be possible one day.

Morning everyone, I’m not too bad today. Managed a short walk on my scooter yesterday with DH and met a friend so we could introduce the dogs. Our little rescue has just not been socialised so I was a bit apprehensive but we need to try and our friend’s dog was very patient despite being barked at! It was nice to leave the house and see someone other than family.
So quiet day today, going to have a roast which DH will prep but I’ll help with bits and bobs.

I worry about the physical de conditioning too as it’s been 20 years of ME for me this year and my mobility isn’t great and has got worse. I’m 57 so old but hardly ancient!
I think if you have the resources for a private physio that’s a good shout. I did see an NHS physio re lower back pain but the wait was almost 12 months and I’d been to an osteopath in the meantime.
He did however give me some gentle stretches and exercises to strengthen legs/ core that I did for a while but I tend to not keep it up unless my back flares and reminds me I should. I’ve also used you tube for yoga stretches, so I will look up Adrienne so thanks for that recommendation.

@FishFlaked I mentioned the Merlin app, I’m so pleased you’re enjoying it! A friend with ME recommended it to me and I’ve recommended it to several people who also really enjoy it. It’s especially exciting if you get a rare bird! Though my teen discovered that if she makes bird noises it picks them up so she thought that was great fun 😂

I was also going to recommend gentle pilates. Have this class I have started once a week and it is really gentle, she uses bands and a roller you lie on etc.

You ca get books to do simple stretches etc at home, I have a yoga mat and do that occasionally. A back roller is nice too. You can lie on it and if you roll on it it sort of massages out your back.

Speaking of that our local college is offering weekly back and shoulder massages for £5 each with the massage students. I have been in the past and found it good. But it is early evening this time and not sure I could make it to all of them (they want you to do a course of 6) Nice to look into though.

Still in bed here hoping DH will bring a coffee soon. Have got my period or 'withdrawal bleed' as they call it with HRT. Since starting that it seems to have returned with a vengeance, heavier than ever. Not sure if the benefits of the HRT are really worth the extra pain of this every month to be honest, so considering stopping. I know it can have health benefits going forward though.

I guess I need to speak to someone at the GPs but that is a faff as well.

We also have a storage / work unit for DH's self employment. A bit of a bind but he likes it and it gives him a break from us I guess.

Rainy here today, not conducive to going out really. Might try (again) to dye my hair but DS's girlfriend is here and don't want to take over the bathroom.

@Orangesandlemons77 I sometimes wonder if many women presenting with cfs/me fatigue symptoms are hoping HRT will give them a boost? On MN it is seen as a universal panacea. I had it for 5 years after a hysterectomy* but I still got osteoporosis, which every one on here thinks can be prevented by HRT.

Oh yes every man needs his shed/storage! We keep all sorts in ours.

• at first I typed mysterectomy but luckily that's not a thing LOL

@MewithME no point adding to your fatigue, it sounds like you have more than enough going on! Some gentle stretches as and when, but not sure I could do anything regular. This would be in the category of flogging a dead horse for me!

@Hotbeverageplease I love to hear about your little dog!

Yes over 20 years for me and I still find myself hoping one day I will wake up full of energy. I feel like an old car battery you have to keep charging, but it's just not holding it for long.

Happy Sunday all.

Been up since 7, managed a nice bath and then led on the bed in my dressing gown for about 3 hours.

The new medication for my POTS is making such as difference. It's making me feel so hopeful because my energy envelope has expanded a lot!

I was feeling emotionally unstable last week but looking back and thinking about it it came on suddenly and straight after starting the medication. The medication stops the Adrenline and I think it was a come down from high adrenaline I have been living with for years.

Plan to go for a dog walk later this evening. Easy dinner tonight or takeaway depending how I feel and chuck a film on. Extra rest is needed

@FishFlakedI have also used Suzy bolt which someone mentioned above. They are very gentle and I could do them in a severe crash last Christmas. I also found them very comforting because they are more than an stretching/yoga. The live classes are £9 a week and you get access to an OT and other support which I can't remember. There's social connection to it. I haven't got to that point because I couldn't commit but used the YouTube videos.

You have reminded me I need to prioritse this again

Feeling fed up with myself because I've done almost nothing but lie in bed and scroll on my phone this morning.

I'm beginning to realised that if I could (only) sort myself out a bit the night before - eg work out what I'll be wearing etc, it would help me get going a bit better in the morning.

@EducatingArtiI am the same. My brain needs organisation before I execute especially when having to consider the most energy efficient way to do things.

brain fog makes it difficult. I started using voice memos a couple of years ago. So that I can create voice lists for myself to listen to when energy is low. For example one titled comfy outfits. When I am tired and can't make a decision I use these lists to listen to and can make a decision on an outfit.

They always help me massively and I think maybe I don't need the anymore, so I stop using them and BAM back to not being able to function.

Maybe this is just my quirky brain though. Thought it was worth mentioning in case it helped anyone else

It's a bit like my non PEM self helping my PEM self if that makes sense

@Tiredandwired2 that sounds like progress! Yes too much adrenaline is the enemy.

@EducatingArti it's taken me years to realise about getting clothes ready the night before! Simple but saves so much energy first thing. I hang bra and pants on the hanger too, socks in shoes etc.

Oh I like this. It makes perfect sense.

Hello everyone

Not much to report here. DH is out for the day and I am tucked up in bed reviewing my to do lists and trying to keep on top of admin

I follow an account on Instagram called cocolime fitness - she designed her workouts specifically for people with chronic health conditions. A lot of the programme is payable but there are some free videos https://cocolimefitness.com/

I found myself utterly unable to work out what to eat one day last week, and completely defeated by it.

As well as starting a thread here asking for simple food ideas, I've started keeping a list, so when my brain shuts down, I can remember what basic meals I can make.

@VikingNorthUtsireit makes such a difference doesn't it. I used to love lists so I always relied on them but since long Covid I can't write as well because of pain on hands and legibility can be poor and then I also often struggle to process text.

I started using voice memos when working and needing to record my therapy sessions to write them up. I could then write up my notes without missing any detail. It was a game changer.

I did ask a psychologist about it in my long Covid meeting and she explained the brain uses a different pathway when speaking aloud. It engages more of the brain. I process everything this way and it helps me visualise my day and what I may need to do to make it go smoother.

It's been a game changer.

goodness I chose an involved dinner. It’s lamb but needed turning every 45 minutes. Which has been a lot. And I splashed myself in hot cooking liquid and had to take my trousers off immediately. Great fun. Luckily dh cleaned it up.

I’ve taken my creatine and collagen capsules today, apparently they are very good for helping retain muscles and brains and things. I need to take my omega pills and glucosamine stuff today too.

Ds12 went to bed with a headache, I’ve had to get him up so he can do his homework and sleep tonight before school.

@VikingNorthUtsire I may have said before but leftovers are so handy. I don't always eat the same as DH (allergies) but we often deliberately cook twice the amount of any food that can be eaten cold the next day and put the extra portion in the fridge. Eating the same food two days running can really save thought.

I don't bake these days but something like a quiche or salmon en croute is really nice served cold. First day with new potatoes and green veg, second day with salad. Depending on household number or vege requirement a cooked chicken, ham or meat pie in the fridge gives a few days meals. Our local farm shop sell "home made" pies from a local bakery and they are brilliant. I never used to buy ready made stuff but needs must so I just try to get the nicest ones.

It's very murky outside, ideal for getting cosy and pretending my life is normal. If I could wave a magic wand I'd go back home when I was a child...bath, hair washed and drying by the fire, trifle for tea and a Sunday evening serial ;-)

Oh I just watched the trailer for The Forsytes on channel 5. That's two minutes of my life I'll never get back!

@FurForksSakethat does sound energy intensive. It sounds bloody lovely though!