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.

Yes camper vans expensive and all the extra maintenance, MOT, insurance, storage etc going along with it. I used to have a caravan with ex (pre CFS) and the amount of work on holiday with water, loo, manoeuvring into position. Plus with a camper you are surely limited on sightseeing with parking unless you take bikes and rely on public transport.

@Orangesandlemons77 you sound absolutely drained. Sorry about your MIL she's overinvolved to say the least! She probably thinks she's trying to help. Is she fond of you? Yes maybe your DH can take her out to give you a break sometimes. Families are tricky!

It's good that you had some rest. Maybe back off gently from MIL if you need some space. No point telling her any more about your illness because she will stick to her own interpretation. Some people talk but never listen.

Hope this week improves.

@Orangesandlemons77 this is my happy corner of the internet 😉

I dipped in to the discord from the me association a few months ago but it was not for me in the end. Lots of young people and I found it tiring and couldn't relate to it.

I absolutely agree about stress and arguments or upset. I have backed off from some family members for the exact same thing.i can't spend my energy trying to make them understand. If they wanted to, they could actually Google.

Totally agree your DH should pick up the slack and see his mum more while you rest or do something that actually makes you feel good!

Reflection is good and healthy so think you're in the right lines there.

I was thin and pale when I first got ME/CFS, now I’m very fat but just as pale and still have ME/CFS. I used to keep control of my weight by exercising but now I can’t exercise I would need to eat extremely little to be thin, then I’d get vitamin deficiencies and I can’t be doing with dealing with those on top of my existing issues.

@Orangesandlemons77 that sounds totally exhausting and frustrating for you. I think some gentle distance might be good, perhaps alternate weeks would be easier to cope with. My MIL has said similar things in the past re my diagnosis. The classic one being she was also once diagnosed but she chose not to believe it! And she told my mum I just needed to push myself and I’d get better which upset mum as well as me as I think pushing so hard in the first place was one of the factors in relapsing badly a few years down the line and never fully getting back from that.
After counselling and CBT I think I just gradually realised I was never going to change her viewpoint or beliefs, I could only change the way I reacted to them and trying to explain and educate was just using precious energy. So I try very hard now not to share about my illness, if she mentions it, I change the subject. Luckily she loves to talk about herself so that works!

DH & I also dream about a camper van as a way of travelling but I think the realities might well be harder than we think. We did hire one a few years ago for a long weekend and just pottered around our county as we live in an area with lots of campsites. I enjoyed it but not sure I’d want to do too long in one, I missed having a quiet room to retreat to as we were on top of each other. So a long trip could well end up in divorce lol!

I have a colleague who is sympathetic to my MEcfs but also a bit full of toxic positivity. I try not to talk to her about it either.

I’ve seen a couple of campers on the motorway towing smart cars. Great solution for getting around, but must be a nightmare driving that thing with a car hung out the back of it.

@HelpMeGetThrough, yes ideal towing a car but wouldn't fancy it with my driving! You can get very expensive campervans with integral garages but they are huge!

Thanks for the replies, all helpful. This is why this is so important having places like this to share, when others don't get it in some way or other and we end up bottling it all up etc, worries what they might do / think / say etc.

I got very fat too InMySpareTime,

Yes for me it is down to the combination of some meds I am on and being quite sedentary. Only think which helped was the weight loss jabs unfortunately, and they are too costly for me to stay on long term, so I will need to learn to manage that somehow. I understand. It's not easy.

Morning! Had to take the car to the garage for a mot, hydrotherapy at lunchtime and I’ve got to go to Aldi and we’ll have to pick the car up. I don’t think I have to leave the house tomorrow, which is good as I’ll be asleep.

I've made a double sized veggie lasagne, so that's today and tomorrow sorted. Tuesday's I do afternoon school run and a couple of hours of child sitting for lovely grandchildren, so I like to make everything else easy.

I've also attempted to get a medication review from my GP, but the list was full. At 10am.

Still resting here, I feel as though my heartrate is down overall but nothing to write home about. I get frustrated because I can't exercise. I would like some muscles! Hopefully when this crash is over I can resume my stair climbing efforts. I've tried squats but not my skill set!

I am looking forward to visitors at the weekend so conserving what energy I can.

@FuzzyPuffling grandchildren are so useful as they get older! My grandsons (age 11 to 22) were let loose on our house before it went on the market. 11 year old cleaned the inside paintwork, 15 year old weeded the patio, 22 year old was instructed by his mum on how to use a chamois leather and did the inside windows. Child labour all the way! I'm sure the 11 year old would have been eager to climb up a chimney if we'd had one! Such energy. BTW I don't think they raise a finger at home...

Younger DD had a little girl this year so I get to have cuddles again!

TeaAndStrumpets I love the idea of getting DGC to work. 😀

I have booked my 11 year old DGD to decorate our Christmas tree. She loves doing it (she helped a couple of years ago when she was off school with a bug) and has gone on about it ever since. She's welcome to it!

Excellent! We have always delegated tree decorating, although DDs often nearly came to blows over artistic differences.

Morning all, hope work isn’t too stressful this week @MewithME and everyone can be kind to themselves today.

Not much happening here other than resting too. I did manage a soak in the bath earlier and heart rate seems to be better than last week so I’m hoping maybe things are a tad better. The trouble being every time I think that, I dip again so trying very hard to keep on resting and be certain things are actually on the up before trying to jump back to baseline. It’s very boring though!

Doing a little bit of online Xmas shopping and watching a bit of Netflix with dippy dog on my knee. She finally let my son stroke her yesterday an hour before he left. He was so patient and understanding despite getting woofed at a lot in his own home. I expect he’ll have to start all over again with her at Xmas but at least we know she will settle and accept new people eventually just in her own time. He’s here for much longer so that will help.

Woke up feeling a bit bleugh, went with DH to the co-op to get the yogurt i couldn't see at Aldi, then forgot about. Now have a headache and feel a bit more rough. I hope I'm not coming down with anything. Hopefully the curry DH is doing for lunch will sort it out. Hope everyone has a good day.

Edited to sort out spelling.

@TodayIsatrickyone that sounds like great progress with your little dog!

I think getting back to baseline will be wonderful for me and I am trying very hard to do the right things this time. I have had three nights without waking up with a racing heart. So hard to keep on pacing, but it is just so crucial.

Looking back, I've been on a slippery slope since last year. There were things I HAD to do, which set me back, followed by things I SHOULDN'T have done, which I thought I could push through. Easy enough in hindsight, and I feel guilty that I've brought it on myself. It's just the frustration, and wanting to put a brave face on things.

So grateful for this thread..

@danglethedingle sometimes I look at what I have written and it's so full of typos! Finger faster than brain.

I’m exhausted after having done nothing. I think it’s the increase in pain levels, the change in weather has caused agonising pain levels. I nearly cried this morning! Tramadol and Ibuprofen not touching it. I shall remain on the sofa a la Lady Muck and do sod all! I need to dry the washing and unload the dishwasher later. Much later!

Can I ask about the hydrotherapy, is this via the NHS and how you get referred for it please? Thanks

@Gilead it is a perfect sofa day here, chucking it down. The weather seems to have taken a chilly turn. Have you got plenty of hot water bottles?

Hope your pain killers kick in soon.

Thank you, bright but chilly in the north east, I am under heated throw!

Aren't heated throws the best thing ever?
Hope it's helping you a bit, Gilead.

Totally get it @TeaAndStrumpets it’s the most frustrating of illnesses and hindsight is a wonderful thing isn’t it! Three nights without the racing heart is great progress, let’s both keep up the sofa lounging and remember we’re not doing nothing, we’re giving our bodies the rest they need! ( Can you tell I’ve listened to a few meditations this last week!)

@Gilead that sounds tough, the change in weather gets me too pain wise. I’ve had a week of usual painkillers just not touching it and there have been tears. I find heat helpful alongside painkillers and my heated blanket has been a godsend lately. An Epsom salt Bath helps me too but that’s not always manageable in a crash. It’s so hard isn’t it?

I do have a GP meds review coming up as haven’t had one for many years and I’m going to ask about better pain relief.

Sorry double posted re heated throws!! 😂 Bloody love mine! ( So does the dog!)