What are you up to today if you have chronic illness? Thread 4

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5438353-what-are-you-up-to-today-if-you-have-chronic-illness-thread-3

This is the bumper Christmas issue with the added challenge of all the work Xmas brings and feelings it might bring up...but we're here. Highs and lows. 🌲🌲😴🤕🤗

I agree about driving being especially exhausting. My DH doesn't drive, so it's all up to me and I cannot do long distances any more. This has obviously annoyed " some people" who, sadly, just don't get it.

It's not just the driving, it's the route planning, parking, stop-offs etc etc.

@Swanhilde yes it feels like my body just works against me all the time. I gave up alcohol in my 40’s because it made me really ill. So disheartening not to eat or drink normally.

Nearly 10 days without broadband now. All my downloaded kindle books are empty apart from the one I had already started. How is that possible? It says no wi-fi… yes I know that!

@FuzzyPuffling I don’t think I’m safe to drive any distance.

It would be impossible to travel for me without my car. It would be X3 trains plus taxis. Dealing with other people and their noise and DS and his needs with his ASD. Plus no public transport at Mum's.

Usually I can do it, I just need time either side to manage. It's been so stressful at work, this time is just not enough time for me. I think maybe I've been below my baseline for a while. Rolling PEM. Not sure.

Basically if I don't do the journey, I won't see her. She won't do the train herself now Dad's gone.

I feel a constant pressure every holiday.

Agreed with driving you have to keep alert and focused the whole time which is really difficult. My mind wanders so easily and I find it so difficult to concentrate and take things in. DH is a talker and loves watching YouTube videos on current affairs, politics etc. The words just wash over me.

@TeaAndStrumpetsyes feels like my body overeacts to everything, alcohol, caffeine, sugar, noise, light, heat, cold, exercise. Sympathies on the ongoing broadband outage.
@Orangesandlemons77, that's horrible and in your own home too. Did DH stand up for you?
@MewithME Same with vitamins, I keep forgetting to take my LDN and iron, they're in the fridge door so I see them multiple times a day, no excuse for it. The LDN is probably past it's best now, I'm my own worst enemy sometimes!

I am not sure if they don't believe me or if they're just not interested enough to understand what's happened to me, but I know I can't be what they want anymore.

Yes, MEwithME I think in my case she is struggling with me not being there as much and sort of taking it out on me?

I think doing that course has given me more confidence around asserting myself and also putting myself first, it was setting me back every Sunday after a visit on the Saturday, now have been in bed since Boxing Day unable to take part with the rest of my family after this episode.

I think going forward I might need to leave DH to deal with her. She topped it off by saying something really manipulative as well.

She kept saying she was going to leave, and exasperated I said 'well leave then' and she snapped back at me, 'you've told me to leave, I will and then I will text him (DH) and tell him you told me to"

I just feel I really don't trust her after that. What else might she be messaging DH about. Who knows. Toxic, anyway.

Stressybetty that's horrible and in your own home too. Did DH stand up for you? he was asleep so no. I haven't spoken to him about it in detail yes as she has still been here, have said we had an argument though.

Sorry for going on about that, no-one needs family drama on top of everything they are dealing with.

Does anyone else find stress really sets you back though?

Ah my lovelies, a tough old time. The toxic situations are such a drag on time, energy and emotions. Be kind to yourselves and remember it’s really not you; it’s them.

We managed another walk this morning, so I’m now on the sofa with my headlock for the rest of the day.

@Orangesandlemons77 I can say with confidence that stress is the single biggest trigger for making me worse. Without a doubt. I think I've got much better at acceptance and saying no. It's like my body does it for me.

I would just disengage completely. Have some stock phrases. "I'm sorry you feel that way." "I'm unwell, don't take it personally".

My mother was giving it histrionics yesterday about being "caught in the middle". I just calmly told her that is not true. She does not need to feel that way. I have no ill will towards my sibling but if they choose not to accept or try and understand my illness, I can't do anything about that and neither can she.

I don't mind anyone offloading on here. That's what we're here for among the lighter things.

My achievements today.... I read my book, listened to my audiobook which is super gripping ( bound to be a stupid ending now) and made two pies with leftovers! Once the shopping arrives, I will lie down for a bit and then I've promised DS a game of UNO!

Oh god, I have just done the most stupid thing!

Felt motivated today so thought I’d run a couple of errands. Grabbed a couple of parcels, hopped int he car to post them, nipped a couple of other places and felt exhausted so came home. Pull on to the drive and my front door is wide open! I’d only gone and put the parcels in the car and then forgot to go back and close and lock the door!

Thankfully I live on a quiet culdesac and my house contents remain intact. How bloody stupid!

whilst out I got lost randomly and had to pull over as my brain felt all muddled. So annoying! I’m home now and intend to not leave the house again today 😬

So many of us struggling after the build up to xmas and various challenging circumstances and relatives!

@MewithME im sorry youre unable to see your mum this holiday but it sounds very much the right decision for you just now but it’s okay to be sad about it. The rolling PEM also makes a lot of sense. I feel I’ve been similar the last 6 months.

@Orangesandlemons77 Im sorry your your MIL is reacting in that way. I think I’ve said before my MIL has similar views on CFS and I remember how hurtful some of her comments were in the early days. Stress is without a doubt one of the worst things for CFS so definitely try not to engage any further and protect your own feelings.
MewithMe has fabulous advice with repeating a few stock phrases. I sometimes use ‘ well it is what is’ as well which is vague enough to not be taken in the wrong way and put an end to any discussion! Hoping she’s not staying too much longer.

Had a quiet day so far but got relatives popping in shortly so will be a busier evening. I’m not really feeling up to it but can’t rearrange so will just have to muddle through! Hoping they won’t stay too long.
DS & GF home first thing tomorrow so hopefully I can rest and take it easy for a few days as the rest of week will be quieter.

@ForLoveNotMoney that absolutely sounds like something I would do! Glad everything was okay when you got home!

Yes stress, physical and mental, very much so.

@MewithME it’s such a shame about not being able to see your Mum but no point making yourself ill over it. I wonder if you could suggest something like a weekend away in the new year, halfway between your houses? A nice AirBnB somewhere you could chill out as a family. Does she ever get away?

I may have fallen face first into a bowl of delicious tiramisu - will try again tomorrow 😋🤣😋🤣

Funny how often that happens this time of year!!

Hello ladies, I've had an entire day at home in pyjamas, it's the first day in 8 days that I've got to stay home and it was desperately needed. I decluttered the three drawers in my bedside table, waxed my upper lip and put on those feet moisturising boot things! What a day to be alive lol.

Strangely this week I've had a close acquaintance reach out to me who has been struggling with health and is being tested for chronic conditions at the moment and that's been nice in a way to be able to give a bit of advice and have someone in real life who's dealing with similar (wouldn't wish it on anyone but you get me right?)

What are everyone's Monday plans? Yes tomorrow is Monday, I know it's hard to tell which day it is anymore.

@Realisation14 I have been in my nightie all day! I woke at 5am with a huge adrenaline rush and felt dreadful all morning but a couple of hours in bed was very calming.

Tomorrow we are going to have lunch with DD1 and DD2 is driving down so we can all meet up. DD1 has plenty of space so it’s ideal for socialising. It will be lovely to see them all.

We are still without broadband so hope to see some telegraph chaps around tomorrow. DD1 scrabbled in her attic and found us some old DVDs but all rubbish sadly! I have bought a few in case we are out for weeks, that will obviously mean the line is fixed promptly!

Hope everybody has a good day and week.

Just got home having been away since Christmas Eve. The friend I was staying with has her own health issues so we've had a very quiet few days apart from DD visiting with the DGC on Boxing Day. It's so nice to be in my own bed with no pressure to do anything until Tuesday when a friend is coming to lunch.
Sorry to hear of so many trials and tribulations over the festive period xx

@TeaAndStrumpets I hate the adrenaline rush wake ups!! They are absolutely awful and usually put me on edge for the whole morning afterwards. I'm glad you had a day in your nightie and I hope today is wonderful for you with your children!

Slept like crap last night. Quite anxious this morning. Lots to do today but I'm going to do it all SLOWLY.

Thanks @Realisation14 my calm day yesterday did help! I slept right through and although I woke up with the pounding heart this morning it is not too bad and I’m determined to have a shower.

yes do it all slowly! That’s what I do wrong, I even walk fast. I think I get desperate to fill every moment, of course I always suffer later.

@TeaAndStrumpets re my mum. No, she won't meet half way. She wouldn't be confident to drive that far or to somewhere new. She's not getting the train either like she used to. It's all on me, unfortunately. She can't travel with my sibling either as they drive like a loon and she can't cope. It'll be Easter now. It's become such a pressure. I can't do weekends away when I'm back at work. I need every weekend to rest and cope with working. MEcfs sucks.

Anyway, back to today. No plans. It's boring but I must rest. Probably more Uno later!

That is never going to work then. How frustrating! Do you have anyone the other end she would trust to drive her? Book a private hire car with a female driver? Might reassure her. That costs though. Your sibling is obviously no help. I suppose your Mum is struggling with her confidence.

Another day of rest here, sleep was slightly better last night.

Need to save my spoons as tomorrow DD, DM and I are going to London for the day. I booked it ages ago and am looking forward to going but not the travelling. We're getting the train and then will get Ubers to take us around but it'll still be a lot.

Hope you have a good day @Swanhilde . Well done for saving your spoons. We are going out soon and DH talked me out of washing my hair so he could trim it for me. He just refused and said it was too much in one day. He is right but it is sooo frustrating. Sometimes when I’ve had high adrenaline it makes me feel energetic briefly but it is fake energy and leaves me worse than ever. I should remember.

Today I have decided to be brave.

My chronic condition affects me in lots of physical ways but it also causes me lots of anxiety, especially being in open spaces, in busy places and with people I don’t know. As a result I really isolate myself and I hate myself for it and I hate how lonely I make myself because of it, but it’s an aspect of my condition that I find really, really hard to overcome.

However, today I am going out with my husband and children to an event that we used to do every week, that I really enjoyed, which I haven’t actually included myself in for almost 8 months. It’s an outdoor event where there will be thousands and thousands of people, lots of crowds, lots of noise and chaos and lots of strangers!!

So after 8 months of waving my husband and children off as they go without me, whilst I shut myself away in the safety of my home, today I have said I’m going with them.

I know it all sounds a bit ridiculous but this is a really big milestone for me.

We are leaving in two hours and although I’m starting to feel a little anxious about it I’m trying to keep in control of myself and I’m determined to do it.

My children are so happy and excited about me coming with them all and that’s really helping keeping me focused too.