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.

Thanks everyone for taking time out to reply

I have been saving up to be able to retire at 55 , I’m 54 in Feb and my mortgage will be paid off in March so I could afford to go earlier really the 55 think has just been such a focus for me during times of struggle but I think this last couple of months I’ve really started to feel disabled and it’s knocked me for six really.

I will look at the options for private checks , I honestly have had some amazing support from the nhs particularly last year on the cancer pathway etc but I think this may be a good idea to speed things along.

You’re all so nice thank you , I’ve got a lot of emotions going on at the moment - lots of guilt about work and the impact on my husband etc it’s nice to hear the perspective of people who deal with similar challenges day in day out

It sounds like you have been through a huge amount with health issues. I know exactly what you mean about feeling guilty but please remember you didn't choose this. It's crappy for you and for your husband but it is not your fault.

Honestly if you can afford to do it then letting work go seems like a good option to me. It's one of the things I talked about in my recent therapy sessions. I feel like because I have limited energy and resources, I'd much rather use those seeing the people I love and going out to enjoy nature, than sitting in an office doing spreadsheets. I can't do it yet but I am at least dealing with the emotional side - giving myself permission to make that decision when the time comes.

@CoastalCalm

What a lot you have been through. You must be exhausted. The last thing you need is to fight the GP.

Do you have a high heart rate as well as low blood pressure ? Pots is diagnosed when heart rate rises above 30bpm on standing. It may be worth tracking your heart rate to check this.

I have long Covid and PoTs. I have recently got medication for POTs and it's making a difference but it's taken 3 years for me to get it. Three years of suffering. In that time I had to leave my job mainly because of the Pots symptoms.If I could go back I would 100% pay privately.

I am still considering it now because the follow up care since medication has been awful. I know it's a postcode lottery in the NhS. Some people are seen quicker but I have done a bit of research and found a few private consultants if you want the details?

All I would say with work is that if this is long covid and you keep pushing to stay in work then you risk lowering your baseline permanently. This is exactly what I did, I was mild and pushed myself so much I ended up moderate and then severe and now I am back to moderate and sometimes mild but it's taken a long time. You don't want to get to retirement and be bed bound

They are so selfish aren't they. The fact he can do that says a lot about him.

Exactly the same with my ex. My life is already unpredictable and he adds to my stress with his last minute plans or cancellations picking up the kids. I'm going to have to put a stop to it for my sanity.

I think we would probably be more ill carrying their baggage though. I know my life is more peaceful without him in it.

This advice is spot on. There is no point getting to retirement at the cost of your health. Perhaps also see if the numbers work in terms of early retirement. It's maybe worth talking to a financial adviser.

Wow, based on that description if those traits were seen nowadays you'd definitely have been assessed and most likely diagnosed! I think a diagnosis goes a long way in understanding ones self. My son was diagnosed at 4 years old and we didn't tell him he had autism until he was 8, we felt he wasn't mature enough to understand the concept until then and when we told him it was like a light switch going on for him and he understood why things were certain ways for him and not others - it was magnificent.

Oh gosh I completely get you about the exhausting and vivid dreams, a nightmare woke me at 5am, I'm so tired of them but also used to them at this point.

I had such a lovely day yesterday, I spent the morning dozing on/off til lunch time then I watched a film, got a long bath, had dinner (which hubby cooked) and then we took our son to town to watch the Christmas tree light switch on as he's never been to watch it before, it only lasted an hour, some lovely singers and performers at it. The best was just the pure joy on his little face. Back home straight into PJ's and back to bed. Just what the mind and body ordered!

My only job today is to have a shower and wash my hair. Have a peaceful Sunday all 💕

Woken up feeling stressed. I woke several times. Probably menopause nonsense but I've got tears in my eyes this morning and I don't even know why.

All I feel is stress about stuff I have to do, and don't feel I have much to look forward to. I don't know. I'm just on this mid life chronically ill roller coaster, with a dose of grief on the side in various forms.

I don't want to spend all day trying to supress awful work thoughts, but I seem to be like this on lots of Sundays. Perhaps I'm just in a bit of a crash from this week still. I seem to get more emotional when I'm in pain.

Anyway, I'm having a coffee and a naughty pastry for breakfast. I need to do piles of laundry and vacuum upstairs and the stairs . My mum will want a call. I have to drive DS to his friend's house and back later. I will try and relax somehow.

I feel like I need a good cry but I can't because I've got DS here and stuff to do.

Honestly @MewithME stuff can wait. What do you HAVE to do today? Everything else can wait especially if it takes unnecessary energy. I would definitely bin off the vacuuming first.

As for crying, sometimes it's good to let go. Can you sit in the shower and have a good weep? I used to do this a lot. Long term, is it worth having a chat with your GP? I was very resistant to taking antidepressants, but now I wouldn't be without my happy pills.

Just a thought 💕

Thanks @Swanhilde . The untidiness is getting me down a bit. I know what you're saying. I think I'm just mentally done in.

Not sure about antidepressants. I took them once when my marriage ended and they helped then but I don't know that I need them now. I'm up and down. It's normal to feel like this when life hands you a shit deal probably. I'm not like it all the time, just up and down.

I do think about HRT now and again but I can't take higher doses because it spikes my blood pressure so not sure about it. I feel anything with MEcfs is a risk. I just want an even keel as much as possible.

Like I said, I was very resistant to taking antidepressants - felt like they were being suggested because I was a 'hysterical woman'. But my GP gently explained that my depression was 'situational' and perfectly understandable when you have a condition like LC or ME. And because they are SNRIs they also really help with my pain.

And I totally get not wanting to upset the balance. I am already fretting about next week's massage and if it'll give me PEM. But if we don't try, we don't know ...

Be kind to yourself 💕

Afternoon!

I’m considering asking for antidepressants. I’m doing cbt but I don’t think it’s cutting it. I cover and mask a lot, the pre-op nurse thought I was joking when I I said I had depression and anxiety symptoms. I just smile and laugh as it makes people feel less uncomfortable.

DH is cooking roast pork, hopefully he’ll manage it.

Sleep was pretty dire, very sore today. I am trying to do the gentle mobilisation but then that leaves me really sore. Meh.

@MewithME my stair carpet hasn't been hoovered for ages but I can understand needing to feel in control. We use a Roomba downstairs but upstairs and stairs we have a cordless aeg upright . It used to be such a pain lugging our Sebo upstairs. It's very ancient now but only gets pulled out for edges and cobwebs with its long reach. I've often thought there should be disposable floors for houses with children in them, like a larger version of the sheet on the bottom of a budgie's cage.

DD forgot to bring the baby's little chair yesterday, so lunch was a sort of roaming picnic. It was all too exciting for her, so she had to be fed while on the run. We realised how very child unfriendly our house is! At home she has a sort of giant playpen to contain her away from sharp things and the dog. She and the dog love each other but poor ddog has been terminally ill for a year (though happy) and has to be kept near a hard floor for easy clean-up of the odd accident.

My brain is not working and I accidentally answered a phone call I shouldn't and had to extricate myself from a long conversation with the most boring man on the planet. Does anyone remember EL Wisty? (Peter Cook) Just like that.

I have vowed to be good this week. Our next house viewing has been arranged for Thursday, so if I rest enough I may get out for a cup of tea somewhere!

Hope all have a peaceful day.

@FurForksSake Oh yes, that's me. Levity is my downfall. The trouble is, if you think about it, everything has its funny side. I know I will be cracking jokes on my deathbed, just to make people feel better.

I am starting to feel the stress of the seasonal jollity season approaching. I have said "no more" to DH regarding social events in the calendar. I know we're lucky to have family and friends who want to see us but it's so at odds with my body rhythms which just want to hibernate and eat soup.

On that last note I picked up a second hand soup maker from FB marketplace yesterday. Hoping it might play a role in low effort healthy meal planning. The old me made soup in a big pan with lots of chopping and washing up.

Hi all, sorry to those struggling today and hope you can find some time to rest.
I was also very resistant to antidepressants at the beginning of my ME journey but eventually I gave them a try just as a way of coping with the ups and downs of chronic illness plus my GP suggested these ones to help with pain. Not a magic cure by any means but I do feel they help keep my mood relatively stable.

A reasonable weekend here, I do feel things might just be beginning to settle 🤞 Managed a quick dog walk ( Well scoot!) yesterday plus lots of resting of course but watched a film with DD and had a takeaway as a treat.
Quiet day today, bit more Xmas/ birthday ordering done so feel like im slowly getting organised.
I do need to do the online food shop as the fridge is pretty empty but for some reason I'm putting it off. I tend to meal plan and DH/DD cook but even thinking what to eat is exhausting!
I’ll just have a rest first!

DH has built my exercise bike in our bedroom. I managed two very painful minutes on it.

Well done!

I have been trying piriformis stretches today and I can barely manage 20 seconds on my worst side!

@FurForksSake well done on the bike!
@MewithME I'm on HRT and came off a tiny dose of antidepressant last year. Went back on them recently as was just so overwhelmed with emotions and anxiety and anger. Feel calmer now. It's only a very small dose but makes a difference.
DH has bought an expensive punch bag thing shaped like a man, can't remember the name, Billy Vs Bob or something. Anyway planning to tidy garage and set himself up with that and his rowing machine in there. Has suggested I use them too but we'll see. I need to do something certainly.

I’ve been looking at private options today to have the tilt test - yes my BP drops and heart rate goes up too and it feels like I’m not getting enough blood supply to my head etc

I’ve actually been out today for first time in 10 days - I had a pottery workshop booked where I knew I’d be sat down but I am absolutely exhausted , met my best friend there and she said my lips were blue when I came in but did settle down and she did any fetching and carrying for me bless her

I’ve got home and husband asked if I am going back to work tomorrow which I said no I’ve asked for a fit note and he’s made it clear he thinks I should look to leave permanently which has surprised me but made me feel more reassured about that as an option. The comments about work depleting me to the extent my health may never recover have really hit home , I’ve been so blinkered about getting to 55 I’ve sacrificed me and not prioritised the right things.

@CoastalCalm I faced a similar dilemma, I retired early and I’m so glad I did. It’s really been worth it.

Morning all,

@MewithME how did your day go yesterday with your mum-taxi duties and the hoovering?

Another rotten sleep with more nightmares here for me. For those chatting about anti-depressants, I'm on citalopram for the last 18 months, I'm not sure it does very much tbh, I also take propranolol as and when needed.

Monday again eh? 🙄

Yep Monday comes all too soon! Sorry about the nightmares, it sounds like a few on here suffer. I have very vivid dreams anyway but if I'm having a surge of adrenaline they turn scary.

I had a calm day yesterday after my busy day on Saturday, but unsurprisingly it's caught up with me today so I'm back to diligently pacing to get my heartrate back down.

Hope everyone has a good day!

@MewithME this really resonates with me - stress, grief and feel tearful a lot of the time, for no apparent reason.

Going to try to have a quiet day (though have a food delivery, hydrotherapy appointment and need to pack to go to look after dad tomorrow).

Re: anti depressants. I took duloxetine for a while, as it's supposed to help with fibromyalgia, but it gave me terrible restless legs and I haven't tried anything since.

As someone else said, it's situational depression - anyone would feel miserable to be stuck on sofa all day. So I'm trying lots of crafts this winter and hoping to stave off the miseries for a while 🤞