Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Happy spring! It's a bit cloudy and misty here.

@TeaAndStrumpets yes you should just need your NHS password to get into the app now. It's not the most intuitive thing but I do find it useful.

I've done a little bit of work this morning - some nice musical second job stuff and some annoying main job stuff, but I'm now ignoring anything else. Don't feel terrible today but I'm not taking that as a sign to do more - am in bed and my only plans are online yoga class (which will be all lying down, can stay where I am), reading my book and napping.

@TeaAndStrumpets yes it is so hard. I am trying to rest as much as I can but even a lot of rest isn’t helping at the moment and for some reason, my ankles are swollen a bit and quite achy. Bodies are weird

@Swanhilde courgette cake sounds lovely! I mainly like raw courgette because I have food textures but I’m guessing it’ll be a bit like carrot cake but courgette instead?

Morning all.

Caught up on messsges
@Oioiqueen I am so sorry that things are hard. I have no advice but sending 💐

Sorry to those struggling. Being chronically ill is so hard. Even though I had a wobble a little while ago I am back on track again.
Having better energy really does make a difference.

yesterday morning my washing machine flooded my whole utility room and I was able to manage it. Knackering and stressful but could do it. I was thinking if I was as I was last year I would have been having a full on panic attack because my heart rate would have been through the roof with POTs and have no one to help me. If any of you have POTs I highly recommend getting that sorted. Makes such a difference.

Interesting chats about visible. I haven't found it that's useful lately so cancelled. It just made me hyper vigilant. But where it massively helped was as an assessment tool for a short time to see what spiked my heart rate. Including activity, food and medication. For example antihistamines massively reduce my heart rate and some long covid clinics do recommend them.

Also helped me get used to learning to listen to my body. Before long Covid I would constantly override my body signals. I have cancelled it now im better at listening to myself. But would get it again if for example I was going back to work and needed to see the impact.

Morning all. Crisp frost first thing but warmed up & lovely & sunny here. Kitchen & back door south facing so the kitchen is flooded with sunshine.

@Orangesandlemons77
@martha79
Yes I'm on top of things now, thanks! I hardly use my iPhone, only for texts, so everything is on my Samsung tablet. I let it remember all my passwords for me but luckily I email new passwords to myself as I make them, so I had to hunt through a bit.

Amusingly enough my apple password is my early childhood address which I moved from aged 2. I recently looked at my birth certificate and realised it was creased over the house number. All my adult life I'd looked at my birth certificate and 'seen' 52 but actually flatten the crease and it's 50! So when I've looked for 52 on google maps It didn't ring any bells, but look for 50 and there it was!

It really does lift the spirits!

@Tiredandwired2 i never used to listen to my body, just soldiered on. I had to hit rock bottom before I realised I should pay attention. Pacing via an oximeter made the world of difference it terms of pinpointing what wore me out. It's hard to unlearn old habits.

@Orangesandlemons77 I do have RA but my role is such that I have a deadline and if people are off sick/doing stupid bloody things or generally not doing their job properly, my job becomes very stressful. But I do need to wake up and do something because I've clicked into autopilot to cope and while the work is getting done, it's at cost to me.

I feel horrendous just now. It's either a crash but more like flu symptoms or I do have a sort of virus. I suspect MEcfs weirdness.

So very true.

My gadget says I'm stable and I'm pacing well today but I know it's because my body is crashing so it goes low because it's trying to cope. This is PEM from Wednesday. 😭

This is why visible says stability score is not a wellness score.

@Tiredandwired2 that's so interesting about antihistamines. I have allergies. I suspect I may have MCAS and/or POTS as well as MEcfs.

Interesting about antihistamines. A GP I spoke to a couple of years ago recommended them too as he’s heard they could help with fatigue. I took the non drowsy type for a while which weirdly enough seemed to help my sleep. May restart and see if it helps again. I took Lortadine which were sold cheaply in home bargains if that helps anyone.

Enjoying the sunshine here. Sat outside with my audio book. Popped to see my mum yesterday and she’s struggling with a few things just now so it was a bit of an emotional visit. I’ve then been worrying about her but I can only do what I can do. Really needed to visit my MIL too but have to leave that a day or two in the name of pacing. I’ve had 3 days of stable on Visible and have felt fairly stable too so I’d like to try and maintain it as since xmas it’s been one long flare.

Sorry to all those struggling, when a flare goes on and on, it just feels relentless doesn’t it but hang on to the hope of better days.

@MewithME May be worth giving them a go. I use fexofenadine. Apparently GP can give a higher dose on subscription and H2 antihistamines which block a different histamine pathway? but I have not been able to understand it much just yet.

I tried antihistamines last year and it was too much. I felt wiped out with them even though they were non drowsy ones, but now my reaction is better. My body must be less sensitive now that I am more stable 🤷‍♀️

Just found this link which is interesting.

meassociation.org.uk/2021/06/dr-shepherd-treating-long-covid-antihistamines/

I take both types of antihistamines on the advice of my OT - fexofenadine from Boots and famotidine on prescription. I thought they just helped with my nasal drip and sinus congestion, but I once ran out of the famotidine and was in the floor with fatigue within a couple of days! Won't make that mistake again, they certainly help me.

Lovely morning on the allotment and the courgette cake was well received 😋 The others planted native hedging whips and I just pottered. Then I came home and thought I'd do some weeding in my own garden. I really should know better by now ... Firstly I went very wobbly and fell over, and now I'm shattered, breathless and achy 🥱

Sitting in the sunshine now trying not to do anything. Will go and have a warm shower in a bit and take it very easy for the rest of the day 😔

Interesting about the antihistamines - my GP suggested giving a cheap one a try for now, so I've got loratadine (Asda's own brand I think). I get hayfever anyway so would probably be starting to take it around now normally. Not sure if it's helping but I don't think it's doing any harm.

I've had a tiny potter in the garden too as the sun came out - just emptied some plant pots from last year's herbs and pulled out a few weeds.

How interesting. I really have felt a massive difference since I started taking them about 5-6 weeks ago. I may see if I can get the famotodine on prescription via GP

I may ask GP too as it’s a cheap option that’s certainly worth a try. My old GP would have supported it but I see a different GP each time and it’s hit and miss how helpful they can be.

Sorry you’ve overdone it @Swanhilde it can be a bit scary when the wobbly, woozy feeling hits suddenly like that. Take it easy.

I just completely lost my balance and could not right myself! Straight down on my bum in the flower bed, flattened the sedum I'd just pruned ....

Warm shower has helped and I'll put my heat pad on later as I think I might have jarred my back 😭

Not the chilled afternoon I was hoping for 😔

We’ve just told our kids that their grandmother has gone to hospice. This descended into fits of giggles over nanny haunting the allotment shed. I’m afraid my husband and I have raised monsters in our image 🤣🤣 Finding the lightness and humour where we possibly, possibly can.

Humour helps at these times. Sorry your family has to face this ...it seems to have been a rapid decline. She will get wonderful care in the hospice, they are such compassionate organisations. I remember our friend taking his mum who was terrified and in pain. When they got there the staff asked her if she'd like a cup of tea, or would she prefer a glass of sherry? They made her feel so cared for. They are angels.

Thanks @TeaAndStrumpets it’s incredibly fast, partly as she’s decided she didn’t want any more treatment. We’ve no clue how long she’ll live in hospice, she’s still eating and drinking so could be some weeks or some days. We are going to have an early birthday for her on Sunday in case she doesn’t make it to her birthday. It’ll be a good focus for the visit.

Morning all!

I am resting this weekend before a week with three appointments so a bit of forward planning is needed! I wish I could take these things in my stride like normal people but that's how it is.

Lovely day here, hope everyone is enjoying it.

Sun is shining here again this morning so I'm enjoying a coffee in the garden ☀️☕

Am going for lunch with friends I haven't seen for a while today, so I am looking forward to that. My friend is picking me up and 🤞 there shouldn't be too much walking once we're there. I am sore and achy from yesterday, but hopefully nothing the painkillers won't deal with 😊

Have a peaceful day all 💕

I'm sorry you're going through this @FurForksSake but as @TeaAndStrumpets says, so glad she's in the best place she can be.

I tried desperately to get my Dad in a hospice and failed. They said he wasn't ill enough yet. He died 3 days later. It'll be three years ago this week.

Morning all.

@FurForksSake I hope the hospice is lovely, and honestly an allotment shed sounds like a great place to haunt.

@TeaAndStrumpets I'm also pre-emptively resting for next week. Got up for breakfast and am back in bed now even though I feel like I could do more things today... want to trim my hair a bit as it's out of control and have a shower, maybe sit in the garden for a bit later.