What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

@martha79 gosh that's such a range of ability in such a short space of time, I can't imagine how hard you've found those changes.

In regards to hair mine has now thinned a little on top but I still have good coverage on the sides so I tend to live in baseball caps. When taking my son to the barbers not so long ago his barber had a double take. When I explained he told me to come back to him if needed and he'll tidy it up for me. No pity, no double ended questions just a bloke who has made it not a huge deal and offered practical support. I'm so glad I didn't bother with a hairdressers and just shaved it myself, I don't need no hand holding haha.

Happy Easter all

Junior park run completed this morning with the eldest. I'm now a little fatigued so plan on not doing much today. Got myself cold whilst waiting to start and still can't get warm hours later. Getting a bit fed up of feeling cold in my bones, as much as I don't like the warm weather I need something. Winds were strong last night and I lost a lot of the heads on my flowers which saddens me a little looking at their bare stalks today. Oh well another day beckons.

Hi all! Hope we are doing ok and having a nice Easter Sunday. Ive not been on here for a couple of days, sometimes reading to catch up posts can be so tiring, then I forget what people have said

@MewithMEso glad you made it to your mum's. Mine can also talk for England and i do find it exhausting. Hope you're managing to snatch some decent rest breaks when you can.

We had our anniversary yesterday and dh is taking me bowling this afternoon! I've asked him to get the chute for me so I don't have to actually chuck the ball. We will see how it goes, hopefully not a disaster!

Interesting some of you have such a clear start date for your ME. I feel like I've always had mine but it definitely is worse since 2022. I remember struggling so much in school and feeling like I had tonsillitis every Friday.

We seemed to miss the storm here too (central Scotland), it was blustery and we've had a random wet snow shower this morning. Very changeable weather and my daffodils have already finished. Strange!

Get yourself snuggled up with a hot water bottle and a nice mug of something hot @Oioiqueen

I feel the cold in my bones too, I bought a heated gilet from the New Forest Clothing co and it's amazing. Highly recommended if you can get one

Happy Easter lovelies 🐣 wishing everyone a lovely peaceful day whatever you are doing.

Me personally will be spending it in bed got a little giddy yesterday with my good stability score on visible and feeling relatively like I was back to normal 🫣 cue me overdoing it housework in the morning, decluttering and washing then out with my daughter to the local shopping complex in the afternoon and then helping with tea last night. Woke up to a morning stability score of 2 today and my body feeling like I could sleep for a week!

My lovely daughter and son in law who live us have just made me cheese on toast and a nice brew in bed and I think I will be here for rest of the day 😊

@Oioiqueenplenty rest and warmth for you today, I am so glad you found a nice barber to tidy up for you and I get what you mean about it not being made into a thing and I am glad you love your doo!

@martha79 I think research will find that covid was probably the catalyst for a lot of ME/CFS , as the others have said it must have been so hard to go from being so active

@JewelleryCat- Hope the weather wasn’t to bad for you!

@MewithME your mum sounds like my daughter bless her she says openly I’m a “Yapper” I just can help it ☺️ glad your getting to spend some time with her and hope you can rest enough.

@bedfrog I am totally the same when I am trying catch up with posts hope you DH have a good time at bowling 🥰

@Swanhilde enjoy your coffee
@TeaAndStrumpets plenty rest needed and opp will soon be over and you will be on road to recovery
@TodayIsatrickyone 21 years wow, you sound amazingly strong and it is good to focus on the good

@Dozymoo42 not too bad but it has been having rain showers and still a bit windy here

@bedfrog enjoy bowling 🙂

Don't worry about keeping up and replying @bedfrog . I am the same at times.

I sometimes feel like we're a spreadsheets project waiting to happen 🤔😆

Columns for which chronic illness, in a flare, annoying family members, helpful family members, done something nice, lovely fluffy creatures bringing joy, lovely fluffy creatures bringing chaos, got out and about and so on. .. 😉

Happy Easter all 🐥🐰🐣

Beautiful sunny day here. A bit cold & still breezy. Due sleet/snow & -2°c overnight..

Dd2 & sleeping dgd already here. Dd1 on her way & dh overseeing the roast.

Today is a good day 😊

🤣 at the spreadsheet - the amount of scrolling back and forward I do to remember who's said what!

I do feel lucky to have such a good GP and have had things picked up on at an early stage. What a steep learning curve though.

I hope you all have some nice Easter treats - I ate the last hot cross bun this morning and my mum sent me some dark chocolate truffles which are lovely but very rich, so will last a while.

Happy Easter one and all.

We booked a last minute Easter egg trail for DD and it ended up cancelled and it was snowing! She was happy to be bought some treats from the shop instead.

Now cozied up at home. Took my blood pressure and it’s in the green and seems healthier than ever-
usually a bit high. Maybe all the rest is helping in one way.

I do find it difficult to keep up with replies as well but reading with interest what everyone is up to and everyone’s experiences. @martha79 What a dramatic shift in your life. It is so difficult to mentally adapt to . @Oioiqueen great you are able to build some strength. Sounds like you have been through it.

Happy Easter everyone. I have eaten way too much chocolate but it's Easter! Mini eggs are so addictive.

@martha79 Covid is really horrible. Mine hit me in a similar way. I was doing HIIT exercise and strength training weekly. Then after Covid I couldn't do any exercise and gradually got worse. Pacing and the right medication for PoTs has been the thing that has helped though. It's still hard though. I don't know when/if it would be classed as ME/CFS. It seems there is no common practice for that.

@Oioiqueen I know the cold in your bones feeling. I have a uniqlo gillet which I put under everything I can. It has little poppers on it too so it can be hidden but do its job keeping you a bit more warm.

@TeaAndStrumpets won't be long and your op will be done. I get the anticipation anxiety

Lovely to hear about everybody's doings! I get lost sometimes keeping up with you all but I do read everyone's posts and am glad we have s friendly space.

I have had a restful day snd the panic is dying down. I feel sorry for poor DH he bears the brunt of my anxiety! He is very patient bless him. It's not just the op, there's a lot going on slowing our house sale, so I am permanently on edge about that. We lost several sales last year so can't take anything as a given.

I have bought a few summer skirts in the hope of some good weather in the coming months...you never know!!

Morning all! The weather seems better today. We had hail and rain yesterday but it's calming down now.
Awful night but hoping for better today. I can't switch off my brain but trying to rest today. I've got some audiobooks so will chill on the sofa.

I tried some earbuds yesterday for the first time and they don't go in my ears, or at least I can insert one but the other one hardly goes in then drops out.. DH found me some old Sony foam over ear ones, decades old but do the trick.

Hope everyone has a lovely day.

Another slow day here. Ate chocolate yesterday (of course) and then didn't sleep well, awake a lot. Oh well, if you can't eat chocolate at Easter then when can you?? 🤷🏼‍♀️🍫

Hoping to get out later and sow some more seeds. In the bed this time so 🤞 Salad leaves, rocket, radishes and spring onions. I've also frozen some California poppy seeds to see if that helps with their germination 🌱

Have a restful day all 💕

Morning all, tired one here. Also ate far too much chocolate yesterday after avoiding it for weeks and didn’t sleep well. I’m definitely noticing a correlation there that I hadn’t before.
Visible just scored me a 1 too so I think I need to listen and rest.
At least I can’t overdo it on the chocolate today as I ate all mine yesterday 😜

We had my mum over in the afternoon and for dinner which was lovely but a lot of chatting for me! DD and I had been talking earlier about how I knew nothing about my dads side of the family ( he died young wirh no siblings) which prompted her to start looking at the family tree online so that was fascinating as she found my great grandparents names and was able to work back. My mum thoroughly enjoyed the whole thing!

A very quiet day today. The sun is out so hopefully a potter in the garden with dippy dog later when I can find the energy to get up that is! DH is planning on planting some new shrubs in our finally bramble free border so I shall watch and point from a chair 😊

Have a peaceful day everyone.

@TeaAndStrumpets it’s so hard when you can’t switch your brain off isn’t it but totally understandable with your op looming. Sounds like a good plan to focus on physically resting instead and hopefully the audiobooks will distract you. I find I prefer some narrators over others!

@TodayIsatrickyone it is brilliant to look at family history together. After my Mum died I discovered she'd not only written a brief history of her life, but she's labelled all the family photographs which was SO helpful. She'd got into family history after she retired and left loads of research and photocopies etc. She had a fabulous letter from a priest in very rural Ireland who couldn't answer her question but wrote about 4 pages anyway complete with blessings so that was lovely!

I agree about narrators. I've been listening to Martin Jarvis (Wodehouse) and he is brilliant.

Ah that sounds fabulous and very organised of your mum. Ours was a much more haphazard remembering ( or not in mums case!) of names but very satisfying for DD to get results. I’d tried years ago but drawn a blank on that side of the family but new access to the relevant census record meant we could find out now so I may well try and do a bit more research into it. Also one of DHs relatives had 18 children so that was fun!

Gosh yes I feel so sorry for my female ancestors! My grandmother was one of ten children late teens down to babe in arms when her mother died (dropsy so I assume kidney failure) Her father drank himself to death within a year so the children were parcelled out to orphanages, foster care, apprenticeships etc. She went into service at 12. A few of the older boys went into the army, two died at Ypres. All so sad. My grandmother was very affected by it all. The older children were close all their lives but the little ones found new families and lost touch.

I went to church and cooked a roast dinner yesterday, and today I've done the washing and tidied out the ( admittedly small) shed.

On a roll...!

Time to slow down! But sounds like lovely day.

Afternoon all.
Another lovely sunny, slightly chilly day. Had all the family over for a roast yesterday & it was lovely. Dgc, nearly 3 is an absolute whirlwind. Wish I had her energy!

Ds is recovering from a cold & feeling a bit sorry for himself. He's under strict instructions to keep his distance as I'm extremely immuno compromised atm.
Rough night as we overslept yesterday & I took my steroids rather late. Hopefully better sleep tonught as I took them at 6.30am this morning.

Dh working today so nothing special going on.

Have a good day all 😊

A lovely sunny day here today like storm Dave never happend ☀️ Managed to peg out some washing and then it will be relaxing on the couch watching tv today.
Still feeling the effects of doing too much on Saturday and we’ve had a rough few nights with our little dog her tummy is off she’s currently sat in her face place on my lap feeling very sorry for herself 😞

Seeds are sown and I've done some weeding sat on my bum on the grass! It feels so good to be out and in the soil. The sun is shining too ☀️

Have also planted the poppies and spotted a moth/butterfly on some bluebells 🦋

Now I definitely need to rest so I am lying on my lounger in the sunshine. DH has provided the obligatory tea ☕