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.

Oh my goodness I thought it was Thursday! No wonder @FurForksSake is in hospital...I thought she must be in the previous night for some reason!

Sudden panic here, doing all the things I'd put off until Friday like hairwashing. Got upstairs to the shower in three goes, sat for ages on the bathroom stool, sat for shower and hairwash, sat to get dry, sat on the stairs twice on the way down. Made it to sofa, heartrate only 100, so better than before. Hope it doesn't rebound on me tomorrow. Phew!

I've sacked everything off and I'm in bed. Yo hell with everything.

And sometimes that is absolutely the best thing to do @MewithME . Take it easy ♥️

Cake is done and DH is cooking a curry which smells delicious 🤤 DD is on a slow moving train heading south 🤞

And I've had an epiphany and put my heating pad on my lower back! So much better ...

Hope everyone is warm and cozy, protected from the storm and that @FurForksSake will be home soon 🥰

Yes thinking of @FurForksSake all day today.

I've nipped out in the storm to get DS from school. Horrible out there.

Back in bed and in pain.

Pain with MEcfs is very weird. I think there's several types going on at once. Even my gums ache just now..the main one is that lactic acid feeling iny muscles and I don't know what to do with it. I feel like crying even though objectively it probably isn't that high on the pain scale, it's just so unpleasant and relentless.

Hi all,

Had to take myself away for a while because I was too ill to do much of anything. Things a bit more settled now thankfully. Medication changes and adjustments are a right headache! Especially when no one wants to help. Consultant saying speak to GP. GP saying consultant.

I have been in all day but managed lots of admin tasks. Making a start on my Christmas list too.

I haven't been able to completely catch up the thread but @FurForksSake hope all goes well with surgery and hi to new posters 👋

@Tiredandwired2 glad things are a little more settled now.

@MewithME sounds like bed is the best place to be especially after a very full on work week. I find the pain with ME so hard to describe. That lactic acid feeling is horrible. Last week, when I crashed, not to sound dramatic but I felt like I had some kind of poisoned feeling running through my veins! I think like you say it’s not especially high on a pain scale but just thoroughly unpleasant and relentless which is exhausting in its own way.

For once ( SW England) the storm is not over us. Yes, it's rained all day but that's normal. We're used to getting about three named storms every week here, so I'm just basking in the Londoners saying "is it safe to go out?" 😁

PS I worked in London for many years, so I know how it is.

We've been watching water running down the road like a river, luckily our house is well above it. I am grateful for the steep driveway.

Thoughts to everyone struggling today, or having medical things. Also to those who have had to go out in this vile weather, especially driving in this. My car is very little, I find travelling in heavy rain a challenge, so hats off to those brave enough to face it.

I've been spending most of the day just sitting, but after yesterday's efforts I don't feel guilty about it.

How come my mum always says "ohhh hope you're not coming down with something" when I tell her I am exhausted and experiencing symptoms. She does believe me and knows what MEcfs is. It's like even the people who say they understand, still don't understand it's a physical illness. 🙈

My mum has been similar. If I said I wasn't feeling great she would say 'How come, I thought you were feeling good the other day'.

I think she is starting to realise that its unpredictable but I did end up just telling her I am coping the best I can when she asked how I was. Just so I wouldn't get frustrated.

I do think anything like CFS/ME is very difficult to understand. I have long Covid but do get the PEM

Hello gang! I hope you all stayed mostly dry.

I escaped the hospital! My heart rate was really high in the anaesthetic room and my blood pressure low. They didn’t like that but decided it was normal for me. I’d stood and walked and it just sends me haywire. I woke up after the anaesthetic with a normal heart rate but really low blood pressure. It came up enough, I passed my walking test and got home!

I had a nerve block put in and it’s wearing off now.

but I’m on my sofa watching gardeners world and eaten a tonne of pizza.

they listened to me and were very, very cautious with my shoulders and joints with the hyper mobility.

I am wondering if I should go to the gp about the Pots type symptoms. I’m sure the dizziness and high heart rate are just me being a bit crap, but the dizziness and bear blackouts are annoying.

thanks for all the vibes and well wishes.

I am hopeful I can actually get back to work and I am super impressed I hid from the cold.

Pleased to hear you've escaped Fur and hope you're feeling ok now and are resting. Here's to a restorative sleep tonight.

Well done @FurForksSake ! You have done so well. Enjoy your weekend.

Yay 👏 pleased it’s over and you’re home @FurForksSake sleep well tonight.

Aw @FurForksSake good to hear your are home.

I don't think doctors are very well informed about POTS but from my Facebook support group, people who have POTS seem to end up on a beta blocker. But...one thing at a time eh? 😉

Hope you can sleep tonight.

I've been dozing all evening. Absolutely exhausted here.

@FurForksSakeI would definitely go to the GP if you suspect POTs. I went 3 years ago and only now getting treatment. The medication has been life changing for my functioning though. Wish I had it sooner.

Great that the op went well. Rest up

@Tiredandwired2 my sister has had it diagnosed, I’m hyper mobile with many ehlers (nearly all..) traits. The anaesthetist was very much sounding me out about it, but I wanted my surgery not to admit to anything that might cancel it.

Im glad you’ve found treatment that works; the stuff my sister was given meant she passed out more!

thats understandable about getting your surgery done first.

I was the same with beta blockers last year. They made me feel awful because they tanked my blood pressure. I didn't pass out but I spent a lot of time crawling on the floor.

The medication I started a month ago is so much better but I think the dosage was too high which made me feel great physically but cognitively I couldn't function. I have halved the dose and have a half medium for now. There are lots of different medications they can try.

Hi @TeaAndStrumpets thank you, I hardly ever admit to anyone in real life that I have PTSD or health anxiety unless I'm very close to them because I HATE to be seen as unable to cope.

My son has autism and it's been researched to show that those with autism are 40% more likely to experience PTSD from a traumatic experience than those without ASD. CAHM'S diagnosed him with PTSD at the end of last year and recommended EMDR as the treatment because he couldn't bear to discuss the events to engage in talking therapies. Because of his age and autism (10 when starting and 11 now) they have to take it really slow with the treatment so as not to overwhelm him but it's helping him to process the events which caused the PTSD for him. It's been a long rough 18 months for my poor boy and for us to bear witness to his mental distress.

When is the surgery scheduled for? I hope you managed to get things under control ❤️ thinking of you x

Morning all!

Rather noisy here last night, and so much rain. I was up at 6 to take my osteoporosis pill. It's only one a month but I have to sit upright for an hour to make sure it goes down safely. It's really big to swallow, but after a tip from a friend I don't drink the water cold but top up with some boiled water from the kettle so it's tepid. Seems to help. Anyway my time is up so I can have breakfast soon!

Today is the day DD2 is driving down with DGD so it will be lovely to see them. Otherwise just our Waitrose delivery. I have finally worked out how to redeem their 'Treats' vouchers but that was me being dense. The Waitrose delivery drivers are always so nice, we often have the same ones. Last week we got a woman and she seemed pretty strong! Good for her.

That is my boring day so far. Hope you all stay warm and dry.

Take it easy @FurForksSake

Good for you!! I did the same last night. When I got home from taking my son out, my husband was cooking dinner and I genuinely thought I was going to faint, my hearing went, my vision was funny and i was so lightheaded so I did exactly what you did - took myself to bed and sacked off the rest of the evening, I was exhausted after it. I put on the film 'now and then', good 90's movie which reminds me of my childhood/preteen years.

@Realisation14 I took so long to type my post I missed yours!

Thanks so much for your post about EMDR, it was really interesting. My middle grandson (16) hasn't been to school for several years because of anxiety. He has ASD and has an EHCP. He became terrified of another child at school after a scuffle and that was that. He was reluctant at primary school but after a good start at secondary this really threw him. It's such a shame because he had made friends and was doing well.

He has tutors coming in and did have a therapist, but I think it was just talking therapy. He is very lonely and is desperate to go to college next year. Hopefully he will get some GCSEs, just the basics. I will mention EMDR to his mum.

The EMDR sounds interesting. My daughter was offered it a couple of years ago but it wasn't the right time. I'm hoping she can be offered it again.

I could probably do with something similar myself. I really need to stop trying to 'tough it out'. I think it's really had an impact on my long Covid.

Dry day here so far. Hoping to get out for a short walk with the dog. Then taking my daughter to my mums. Sons already there so I have a several kid free hours. Small Sainsbury's trip and then pop into my sisters to hopefully finish planning our trip away to London at the end of the month. So nervous though because last year it resulted in a crash but physically I am much better this year.

Hope you all have a good day.

I am euphoric that I am home after my surgery. Euphoric.

I have suffered from night terrors and extreme nightmares all my life. As a child I would scream and shout and sob and hyperventilate in my sleep on a very regular basis. My mum said it was horrific as I was so, so upset. I have had the same recurrent nightmares about my dad trying to murder me (he hasn’t, he left us and it was very traumatic, we lost everything and he… didn’t. We have a relationship now but I sometimes find it hard to separate lovely grandad from what he put us through) or one about crisps, which I know sounds ridiculous. I had a dream that I was sat in a big circle in a blacked out room and someone passed around a bowl of prawn cocktail crisps, I was too afraid, or embarrassed or shy or whatever to take one and the bowl passed me by. And then I had a meltdown in the dream. I’ve had this recurrent dream since I was 4 or 5. I didn’t speak till I was 4.5.

Im sorry for those suffering, I believe EMDR can be very successful.