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. 🌲🌲😴🤕🤗

Thanks all for loving my wee bobble, he is such an adorable wee boy.
I ventured out, I took a Nefopam and it helped a tad. Back home and fire on now. I might crochet a bit, or maybe not 😂
Swearing is one of my many bad habits!
X

Sounds lovely @Megsdaughter ! Something to look forward to.

The allotment was wonderful this morning ☀️

No gardening was done, just a coming together and celebration of what we have achieved this year. The biting cold was warded off with sausage rolls and hot pumpkin soup, made from some of the squashes we had grown 🥣

Came home and have slept all afternoon 😴

Beige buffet for tea and I will have some leftover Christmas pudding and clotted cream for supper 🎄

A soothing and restful Boxing Day 💕

Merry Christmas everyone ❤️

It’s been a very quiet one here but nice.

I feel like I’m brewing a chest infection so need to keep a close eye on that with the infliximab and steroids. It never rains but it pours hey

Worn out, cold and achy legs, watching Newcastle match. Busy day, last nights washing up, fed dogs, cleaned hob. Cleaned and tidied main (MIL) bathroom and our ensuite, de dog haired and hoovered top landing and one set of stairs. Put floor mats to soak. Took it slowly and had tea breaks.
Will attempt to change bed and clean ensuite floor later tonight.
Tomorrow DH wants to de clutter office and clean and tidy lounge and main floor.
Be nice to go back to work on 2nd with a hopefully sorted clean house.
DH has gone mad buying plastic storage tubs and sorted the contents of the kitchen cupboards into them. Wants to do the same with the utility cupboards and the office dumping ground contents so will let him get on with it.

Morning all!

It’s the crack of dawn, I was awake at 4 am with heart pounding. Still haven’t got over my very short excursion on Christmas Day, trying to save energy for a longer trip out on Monday.

A week without broadband and counting! Managed to do bank and online shopping on mobile phone. EE have messaged to say my “free data” is almost used up- I get it with our phone/tv package. I suppose I’ll have to buy some if this keeps up. I resent buying it if we then get Wi-Fi back on, but it is a lifeline at the moment.

@Stressybetty you are very industrious! DH is busy packing up his study but it has years and years of accumulated paperwork so it’s a long job. We have also been buying plastic storage boxes, we get the Wham ones from Amazon. I packed away my warm clothes last spring but we’ve still not moved so had to unpack them when the weather turned cooler. Hopefully 26 will be our year!

Yesterday we went to DD1's for a fabulous meal. Really delicious. We walked both ways which was knackering but I slept fairly well. It must have been cold, as Girlcat was under the duvet with me!
Today I have nothing to do and nowhere to go. Bliss!

Morning everyone, anyone else glad it's all over? I'm going to the cinema today with my sister in law to see the housemaid, we're both big Frieda McFadden fans and have read majority of her books so looking forward to it.

We are going to my parent's today. Could really do without it as my sleep has been terrible and I just want to stay in bed and recover 😴

But needs must and I have no plans for the following two days ...

We are off for a walk, again! I decided that even if I can only do 30 minutes it is worth it to get out and do it and suffer the consequences. We are off somewhere 40 minutes drive away for a 30 minute walk, but the drive is part or the outing and getting out is good? I hope.

@TeaAndStrumpets ah we moved rented house back in Spring and will probably have to move again in a few months. Difficult finding long term rent and moving with and accomodating MIL needs.
We basically dumped boxes in rooms and haven't had time for a proper sort out. Tiring having a 3 storey house also.
I work full-time from home and MIL has to have someone with her constantly when she's awake. Office has become a dumping ground as has dining room and we have far to much stuff.
Promised ourselves once pups had gone and I had time off we would sort it.
Really I suppose we're also trying to prepare for moving again.
We have a lot of big euro crates in the garage with trolleys, a ramp and a professional sack truck!

@Stressybetty Respect! You sound very organised with your crates and sack truck. It makes life easier!

I'm absolutely wrecked today. I did a walk yesterday. It was amazing. Sunshine and I felt ok. It was probably too much. Feel awful today.

I am going to decide to stay home this week. I haven't seen my mother for months but even though I feel bad, I can't do it. It's a 500mile round trip. I'm just not well enough.

@MewithME please do take gentle care, that trip sounds like it would be far too much right now. And that’s ok. You have to prioritise your ability to function and care for Ds.

I have bought myself an electric heated neck and shoulder blanket. I’ve been really struggling with my neck and shoulders and using a stinky wheat bag. It’s lovely!

@MewithMEAgree, hope you can rest up. Be back to work soon enough.
@FurForksSakesounds lovely, I couldn't manage without my electric throw.
Didn't sleep well, achy legs and too hot.
Finished cleaning our bedroom and en suite, stripped bed and started the washing.
DH tired too so decided to leave anything else for today. Back to sofa

Had a bad day yesterday. Argument with MIL who is staying. She's been making little comments about me staying in bed and DH doing the cooking etc.

I told her well is because I have CFS and she said 'so you say' I told her it is what the doctors say, I have a diagnosis and it is not nice not feeling believed.

She went on to say that she thought DH was drinking more because of me, and I should 'look inside myself' and some more stuff. I started crying and she told me to pull myself together.

So, I'm now hiding in the bedroom for her, she will go home tomorrow thankfully.

@Orangesandlemons77she sounds like an awful woman. Ignore her and don’t invite her into your home again if she can’t be respectful of you and your health.

Well I slept through the night last night without having to get up to the toilet once! That is a major win for me and hopefully the start of my medication starting to work and not just a flukey one off

I have come to the conclusion that Christmas is really difficult for people with chronic health conditions. Too many expectations, too much to do, too little support.
I've had a relatively quiet Christmas, but will still be glad when it's all over. And I don't do New Year at all!

OrangesAndLemons77 your MIL sounds like a prize twonk.

@Orangesandlemons77 so sorry you had to put up with that in your own home. I assume you can’t ban her. Families should be a support in hard times.

I think I have been in one long crash for months now. Christmas took a lot of mental energy and my IBS is bad. I can’t get on top of the night time adrenaline rushes. I had a bad one at 5am, tachycardia for over 30 minutes. After getting sent to hospital last time I know there is nothing major amiss so I just lay there trying to relax. Desperately wanted a hand hold but settled for clinging on to DH’s arm as he slept, which was quite settling.

Quiet day today - I have to go out for a family lunch tomorrow, but that’s it for weeks.

Morning all. @Orangesandlemons77 that is so upsetting. Have you discussed this with your husband? I know it's a difficult position for him but it would be helpful if he could have a word with his mother. What awful behaviour.

I think it's impossible to have any sort of relationship with people if they don't believe you or support you. I am struggling with my sibling for this reason. 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.

I told my Mum I won't be visiting this week. I feel sad but I know I can't do it. I have been low for the last couple of months really. I did new year visits for the last two year but at cost to myself. I know I am not going to get away with it this time. I couldn't even get away with a little walk. 500 miles of driving isn't going to happen.

I'm hoping that at least if the decision is made I can relax a bit. I feel stressed mentally. I envy my local friends with their families nearby. It makes life so much simpler.

@TeaAndStrumpets I can't remember if you said what caused these episodes or not? Is there anything that helps like magnesium supplements or something? I wake up frequently but not quite like that. I do wake up abruptly and get a bit of a heart rate spike but it settles quickly. My beloved earbuds and audible and heatpad combination always send me back off.

@MewithME I can only assume it’s caused by CFS/ME because I don’t seem to have any specific ailments. I just never got back to baseline after Covid last year, whereas previously my cfs had been reasonably under control by pacing. I think magnesium is a good idea. I have had a dodgy gut for months so that probably doesn’t help.

I need to get back on my vitamins. I've been really slack. It's a pathetic act of rebellion I think! I just don't want to bother...I want to feel normal and not have to do these things sometimes.

I also really really must try my nurosym gadget again. I haven't given it a proper go. I can't remember when I bought it now but the wire got damaged when I was building up my tolerance and then I got over sensitive and a sore ear so stopped it for a while. Now I keep forgetting and really need to try again.

Some vagal nerve stuff might help you @TeaAndStrumpets ? Have you done any of those exercises that are supposed to calm nervous system down? I have some links somewhere. Sorry if I'm being a pain suggesting things. I've been programmed by my mother 😂🙈

I am suffering the same @TeaAndStrumpets . Pounding heart and whole body fizzing. I always put it down to my system not coping with sugar and alcohol anymore. I'm so much better when I avoid them. But like @MewithME I want to be 'normal' and join in the festivities at this time of year. And there's so much lovely food leftover, I can't bring myself to just chuck it away ....

I am so tired today. Driving back from DP's yesterday I was nearly in tears I was so exhausted. We didn't stay late and I went straight to bed, but it was another disturbed night so really feel no better this morning.

Nothing to do today so will completely rest. And no sugar, although the remains of the Christmas pudding are winking at me ....

Take it easy everyone 💕

That's sad you can't see yout mum, but that is a very long drive.

Driving is a very major trigger for my fatigue so I can't do any long drives anymore, they are too exhausting. I can make it there but the brain fog means I don't feel safe for the drive back. It's very restricting and sad, I used to love to go off on my own across the country to gigs and events.

I still get away now and then but it takes a lot more planning. I always use the train if possible, it takes longer but I do not have to have my wits about me so much. If I can't take the train I try to break up a long drive with overnight stays somewhere nice, and make a little road trip holiday of it rather than just one long trudge there and back. It does make it expensive, but means I do get to see far flung friends and family occasionally.

Is there any alternative to driving to get to your mum @MewithME ? If you plan ahead the train can be cheap.