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

[MewithME]

I do like the What are you doing today thread. But as someone with an energy limiting illness, I find myself marvelling at the level of activity that is beyond me.

Sometimes I feel sad about it even after accepting my illness for a few years now.

My week at work has been brutal and I'm feeling very weak and worn down. I am trying to find some inner peace.

This morning I managed a bath and ds helped when shopping arrived. I sat in the garden for a little while but newish neighbours were playing loud music which I found a bit stressful.

I've managed to put a wash on and made some lunch for us. I'm now in bed listening to some music festival in town floating on the breeze. There's sirens going off, so hope nothing bad has happened to anyone.

I'm going to lie down for a couple of hours. Hoping to watch a film with DS later. Pizza for dinner.

I found a nice new podcast called Shedunnit with lots of Agatha Christie in it which is up my street.

I may just lay here and listen to that for a while.

So if you have ME or LC or fibro or anything else that is a flipping funsucker of a thing to deal with, do share your little things. Our world is smaller but we are here.

I will add I know there are those worse off than I am, but not matter what we deal with, chronic illness is hard and it's hard to feel part of the world.

The last 3 days have been hell. Constant pain, IBS flare up and on Thursday the exhaustion was unparalleled, felt so bad for my son as he was bored home all day with me being a mess. Left the house yesterday and today for his sake but fuck me it was hard. Having anothef full rest day tomorrow.

Had fun with the heart monitor tonight. I was given a little diagram with a triangle of dots for the colours of the leads for putting it back on after washing. Except I couldn’t remember if it was as I looked at it or the other way. The cardiac nurse told me something but of course fibro fog has made me forget it. I even tried to remember the colours as I took it off but forgot that too. I’ve googled the exact monitor and found 3 different lots of instructions, one from St Guys, and they all say the same thing which is the opposite to what I thought I remembered but I’m going to trust the pros rather than my crappy memory and just hope I haven’t messed up the readings for the rest of the weekend now. 🤦🏻‍♀️

Oh blimey, that sounds hard work. Maybe I'll just not wash when I get mine done 😬

I have been awake since 5 am. Very comfortable bed but just couldn't sleep. My body was doing it's vibrating thing and I couldn't switch off.

Feel shocking this morning. I'm back in bed with a cuppa and not feeling like dashing out anywhere. Think I'll have a soak in the bath with some Epsom salts and see how I feel.

I've never felt this gloomy on holiday and I've no right too. It's beautiful and I managed to get here and my son is happy. Urgh. Must be hormones I think. FFS.

Be kind to yourself, hope your bath helps and glad to hear it's lovely there.

Definitely vote for the Epsom salt bath as I'm currently sat in exactly that and it's really helping.

I do think it takes me a day or two to adjust to a different place and I never sleep well the first night so maybe just give yourself time today to settle.
You got there and that’s not easy with chronic illness so be proud of yourself for that. Plus your son is happy so just enjoy those wins for now. Maybe try and plan some nice food and just enjoy some chill time in a beautiful environment.
I felt truly dreadful the first 2 days in Scotland last week and wondered what the hell I was thinking. Yet by the third day I was so much better both physically and emotionally. Hopefully things will settle for you too.

Another big fan of Epsom salt baths, in fact I might try that today!

The pads you attach the leads to I find start to make my skin really itchy so I do recommend washing. Just maybe take photos of where the different coloured leads are before taking them off. If I’d done that I would have been ok.

I’m also not looking forward to having to get up and ready to drop it off at the hospital first thing in the morning. I struggle terribly in the mornings and the hospital is a 75 minute bus ride for me (plus a 20 minute walk to the bus station first). We also have that storm due here tomorrow so that’s just bloody typical. I’m probably going to have to leave the house around 7am and I’m often lucky if I’m asleep by then. 🙈

@MewithMEI hope you start to feel better and the bath helps. I haven't used Epsom salts for a while so thanks for the reminder that it can help. I hope you can find joy in the holiday.

I have had a few days to myself when the kids were on holiday with their dad. It really did help to have a break. It highlights the extra strain on your system when you have caring responsibilities. I had no guilt if I didn't do anything and on the flip side I could get out of the house whilst I had energy. My son who has ASD often refuses to leave the house so by the time I prompt and convince him to leave the house I am absolutely knackered.

Unfortunately I had a few 'suprises'. Flying ants flooding into the dining room and my cat being unwell.

Does anyone else feel that they are constantly on the edge of a breakdown. I feel like I often pick myself up and try and find a way to keep on going and as soon as I feel maybe things will be ok something else manages to pop up. I feel like each time I am edging closer to a complete breakdown. I have zero resilience.

@Tiredandwired2- yup I’ve been feeling on the edge of a breakdown for a little while now. Even the tiniest inconvenience is causing me to overreact in the craziest ways. Peri-menopause may not be helping there since my hormones are all over the place. It sounds awful but it’s causing me to struggle with most conversations as I’m only just coping with my own stuff and I can’t handle other people’s on top of that. I hate how selfish it feels but at the moment it’s more about trying to protect myself from a full on breakdown.

Looks like I won’t be having to get up early now. DH told me the storm warning has gone up to amber so I called the hospital to check. There wasn’t anyone available to speak to me from the department since it’s the weekend but the guy on the switchboard said they would understand because the storm is unusual circumstances and just phone them to let them know tomorrow.

Spoke to the cardiology department this morning and they’re happy with me going in tomorrow instead. There was the option of dropping it at my local hospital but apparently they take forever to return the monitors so it’s better for them for me just to be a day late.

I’ve had a horrible reaction to the pad I had on the front though. A friend said to me these were the sensitive skin ones too but it’s so itchy I’ve basically clawed at myself in my sleep since removing it and it’s totally raw now. 😭

@Tarkan thats good you don’t need to venture out in the storm today at least but sorry you’ve had a bad reaction to the pad.

Hope you are ok @Tarkan . Have to say it's putting me off having the 24 hour ECG.

Half way through our holiday. Finding it hard and feeling bad for being perhaps seemingly ungrateful and a bit sad about it. Holidays are not so easy I guess when you are ill, lone parent, menopausal and dealing with an adolescent autistic child.

I mean it's lovely here and we've done some nice stuff but I feel lonely. I've felt lonely before on holiday but it feels especially difficult just now for some reason.

Anyway, sorry to moan. I feel bad for moaning when I'm somewhere lovely and lucky enough to afford a holiday and stuff.

How are you all doing?

My house is going up for sale. It was my dream but I need to move to where I can get treatment.

@MewithME Im sorry it’s feeling hard for you just now but don’t feel bad for feeling bad, your feelings are valid.

Chronic illness is lonely and you have the sole responsibility for everything which can’t be easy so be kind to yourself.

Not sure if this is helpful or not but I sometimes have to remind myself that feelings are transient and can change. It helps me just ride them out sometimes.

Hope everyone is doing as well as can be. Not great here as payback from my trip away is still pretty rough but having my little dog I borrow each week this afternoon so he’s bound to help make me smile!

Well my son was not wanting to get dressed and was non communicative, intent on gaming this morning so I asked if he wanted to stay in the cottage and I go out on my own. Now I'm somewhere nice and checked on him and he's upset because he wants to be here.

I'm probably now going to do another hour's worth of driving to go back and get him. Sigh. I'm totally exhausted. It feels like being with my ex husband all over again 😭

Been back to the gp as I had a hormone test that showed high prolactin. Have to wait a week for the results to see if the first one was an error or not. Part of me hopes it was an error but also part of me always hopes something treatable will be found and that will be an end to my problems.

That sounds really hard but likely a sensible decision. Have you found somewhere to live yet? Or do you sell first then look?

I've never sold a house before.

Hope that works out OK. At least they have found it which is good. It's something they test me for regularly due to some meds I'm on.

Gentle hugs all around.

Ended up scratching myself so raw I bled everywhere from where the pad was on my front but honestly please don’t let that put you off having a monitor too. I have weird skin anyway but I assumed because I don’t react to plasters these would be ok too. I’ve learned for next time and I would even go through these ones again if I had to to make sure my heart was ok.

I’m working the bar at my local am dram theatre this week so just trying to protect myself from being in too much pain from it. We only really do about half an hour of serving before the show then the occasional person during the 15 minute interval (most drinks then have been preordered or people will go for their free tea or coffee instead and I can’t do hot drinks for my likelihood to drop boiling water everywhere) so it’s not much at all and I’m still sore by the time I’m done. Certainly couldn’t work in a full pub situation but I’m enjoying it at the theatre. I’m in wardrobe normally so I very rarely see any of our customers. It’s nice being out the front at times LOL.

Have you got something to put on it @ tarkan? Sudocrem is my go to for everything!

Yeah I’ve been covering myself in Sudocrem when I can. It’s definitely healing now thankfully and nowhere near as itchy as it was at first. The ones on my sides I didn’t find as itchy even though I have reacted there too. One of them looks like an upside down smiley face which did make me laugh when I noticed it. 🤣

Not great here today. Found out I went and messed up the online shopping order as I missed the deadline to make changes so had to do another order and I had a good voucher to use as well which is now not eligible, a small thing but I'm annoyed at myself over it.

DH was annoyed with me today as well for 'laying in bed on the internet' when he has to 'work until he's dead' (a bit dramatic but I get how he feels) which just made me feel more guilty

Sorry to moan on, I know others don't have it easy either.

At least the weather is a bit fresher and that makes things a bit easier doesn't it.

I think it's also getting to that end of the summer feeling where it feels like they should be back as school really. I grew up in Scotland and still find it difficult getting used to the terms and holidays in England. I think they go back on the 14th up there.

Sorry it’s been so long since I last dipped into the thread; time seems to run away with me and I don’t get onto Mumsnet as often as I do during the school week - we’re approaching the end of week 3 of summer holidays and I’m exhausted already. Twins will be 6 in a couple of weeks and they don’t cope well without the routine of school so act up a lot - and I don’t cope well with having them 24/7!!

After being told I possibly have fibromyalgia 3 months ago, I was referred to the pain clinic and have now been told that there’s such a long wait for an appointment, I’m being put on a waiting list for one. The council OT who did the phone assessment arranged for a face to face bathing assessment but, like pain clinic, resources are outstripped by need so, yet again, I’m being put on a waiting list for the assessment - but, they have managed to get their tech team out to me this week so I do at least have a perching stool for the kitchen, a bath board so I can at least shower safely now. And they have raised my sofa which is also helping me.

Rheumatology appointment last month has now led to a referral for an ultrasound guided join injection to my elbow (6-8 week wait apparently) and I’ve been told I’ve lost range of movement in the same elbow so the issue might not be resolved with the injection. She also diagnosed me with osteoarthritis of both knees - but then forgot to add it to the clinic letter so I’ve had to email her team and ask for the letter to be updated otherwise the GP probably won’t accept me saying it’s been diagnosed if she doesn’t also tell them!

Lastly, I’ve had 2 job interviews over the last few weeks but been unsuccessful for both; I’m not overly upset about either as, one had an element of sales targets involved and the other one, the company showed themselves to have no idea about whether the role they were interviewing for should be an employee role or if the person should be SE - and I don’t want to be SE, I’m too old to be starting that sort of life now, especially for a 10 hour a week job in a mechanics garage!