What are you up to today if you have a Chronic Illness. Thread 11 🧵Last of the Summer

[MewithME]

Link to last one https://www.mumsnet.com/talk/_chat/5556429-what-are-you-up-to-today-if-you-have-a-chronic-illness-10-summer-edition

Thank you for being here, friends old and new and sharing our gentle chat, trials and tribulations.

You know the rules though...let's be good and fill up the last one 😊

Thanks for the recommendation. That does sound good. I am very much in favour of being frugal and having basic skills.

I don't think I had a shop bought dress until my teens! Mum and her trusty Singer sewing machine did everything needed. I still remember her kneeling on the floor pinning a paper pattern to a worn out blanket, making dressing gowns for my brother and myself. We thought they were the height of luxury!

Have had my needles out for a lovely morning's knitting in the garden ☀️

Back in bed now for a cuppa and a rest ☕

Nice to see you @bedfrog but good to have an internet break sometimes. Hope you manage your walk later.

I’ve just suddenly remembered a couple of birthdays next week that I haven’t organised so had to send moonpig cards but at least they’ll get there on time. I think October crept up on me and took me by surprise as I have a few together that I usually remember.

Hi everyone. I've been adding ❤️ and to posts with the reactions thingy even if I've not managed much chat last few days.

Felt quite down this morning. Feeling like I can't stand my job anymore but questioning whether it's just being in chronic pain and symptomatic and dealing with it is really the problem. Menopause too. Just having a wobble. I am feeling frustrated but flat. Just done with it all but not done. Life feels not shiny and a bit without meaning apart from DS just now.

Anyway I've managed to take DS out for lunch which was good to get out. Back home in bed now. Absolutely exhausted and raging tinnitus.

Sending gentle hugs @MewithME Its tough dealing with chronic pain day in day out.

Remember it’s Saturday, you’ve likely pushed through all week with work so today youre bound to be exhausted and need to give yourself permission to just be. My mood always takes a dive when pain and fatigue are highest.

Well done for getting out with DS, now let your body rest. I hope tomorrow is easier. 🤗

We've had some of the worst stress of our lives from deranged neighbours. It really affects everything, not feeling safe in your own home.

I had a lovely morning being Grandma, but collapsed asleep on the sofa this afternoon. Back to resting.

@MewithME hope you feel better soon ❤

Oh bless you, @TeaAndStrumpets . It's awful, isn't it?
Your safe place becomes your stressful place.

On the day we moved, our NDNs (with whom we used to be good friends) and who had not spoken to us for a year came out of her front door and yelled " I'm bloody glad you're moving".

But our removal men totally had my back and responded with " You get a better class of scum in (place we were moving to)"

Moving was difficult but brought us both mental peace.

Yikes it's worrying that people like this are everywhere.

The poor lady the other side of our last awful neighbour went through hell with him and tried to sell her house to get away from him. He had built two houses in his back garden for him and a family member, and let out the original Victorian house as flats. All very neat and tidy with quiet tenants. He put off her prospective purchasers by leaving scrap fridges in his front garden and a sign which read "Room to let in shared house DSS welcome" Of course her house didn't sell and she kept reducing the price. Nobody could get him to take the sign down.
The initial cause of all this was because he wanted to buy her garden and she refused. He wanted the access to his own land. Absolute nutter.

Eventually a potential purchaser knocked on our door and asked about the fridges and sign so I gave him the background. He proceeded to buy the house.

Afternoon all.
Wow, nightmare neighbours just awful.

Lovely lazy Sunday so far. A lie in, leisurely coffee in bed & a late brunch.
Dd2 & dgd coming over later & ds also popping in.

Weather grey but dry.

Have a lovely day all 😊.

Gorgeous weather here today! Managed to set my shoulder off though by pegging out washing when I really should have waited for DH to do it!

Cant decide if the injection is doing a lot yet, it is a bit easier especially when I wake in the morning but still flaring when I use that arm. Google says can take 7-14 days after the injection so i need to be patient and stop doing things that set it off! Think I’m terrified it will do nothing and I’ll still be in pain.

We’ve got quite a few bits and pieces to sell atm after rearranging DDs bedroom furniture recently so I also decided to make a start and list something on marketplace. Was chuffed I’d got around to it, then remembered how annoying it is when you get replies, spend energy messaging back for the interested person to reveal they really want it but have no transport! Trying to rest and my phone was pinging away!

It’s been quite cool here today, blanket weather!

Afternoon, sunny here but with a definite chill in the air. I've been along to an Age UK 'Silver Sunday' event - went to catch up with a couple of friends who were singing in a choir, that was fun, they do pop/rock tunes and people were up dancing. Had a good chat and tea & cake, but I struggled with the heat and noise and small talk with other people. Sat in the park for a bit then home to lie in bed.

Definitely getting cooler @JewelleryCat. My new hoodies have already come in handy. Tonight it will stay in double figures but the rest of the night times this week will be noticeably colder. Tuesday into Wednesday is forecast to go down to 2⁰c.
New cosy bedding has been washed, dried & put on the bed. Good timing I think!

You're definitely North @CoffeeBeansGalore as it’s 21º here today though due to drop to 14 on weds so I will make the most of it.

Definitely felt chillier at night. DH swapped to winter duvet last week which was too hot for me so as a comprise we now have the summer one back on but a clean cover on the winter one folded at the bottom of the bed in case we need it! 😂

Morning all!

I've been like a zombie the last few days but at least I've had some extra sleep.

@TodayIsabetterone it's definitely duver- swapping weather! We are still on the summer one for the sake of DH who is like a furnace, but on my side I've got a flat sheet folded lengthwise over my side of the duvet. It just gives some extra warmth together with my hot water bottle. I think the moment for the winter one is coming, though! We are moving up to a kingsize bed soon and I've been buying single duvets so we can have different togs.

Morning! It's a gorgeous sunny but chilly proper autumn day here ☀️🍁🍂

I have my massage at lunchtime and then my parents are popping in for a cuppa ☕

But my first job is a shower and to wash my hair. My hair is ridiculously long (can't remember the last time it was cut) so I've made a hairdressers appointment at half term. Hopefully a shorter cut will make washing it a little easier ✂️

Have a restful day all 💕

Morning All, DH and I are still away, we came down South on Friday and DStepFather was taken into hospital Friday night with kidney failure.

I am now probably here for the week at least helping out DM. I'm going to see if I can extend my booking, otherwise it will be staying with DM, which wont work well for anyone.

Ho hum...coming down I said to DH at least DM is quite fit now so I wont be spending the whole time doing her shopping and going to hospital appointments. The Universal Law of Sod was obviously listening.

On the other hand at least it was a planned trip and not an emergency dash, which is so stressful. So its worked out well from that point of view.

We're going to run out of clean undies and socks, but I think I will just buy some from ASDA rather than try to negotiate DMs washing machine. Oh and dog food of course.

Weather is glorious for October though. And the sea air is lovely.

I'm really struggling with pain just now. Why is it like this? It's so up and down with MEcfs. I don't even know how to describe it. It's just constant just now. Nagging, whole body pain. Awful headache. It's probably lactic acid but I just don't know what to do with myself. I just want to cry. I gave in yesterday and did have a cry but it's not good for DS to see me like that.

Any ideas? It's probably inflammation. I know drugs don't work or else the only thing suggested before was amitriptyline which I couldn't tolerate. Maybe I need to be doing a LOT of deep breathing and meditation. So hard when I have to look after DS and do work today (although I'm at home today thankfully).

Sorry to moan again. Feeling very alone and overwhelmed and upset with my life just now. Probably menopause kicking me too. Don't know whether to attempt HRT again but last time it pushed my BP up despite them telling me it wouldn't.

I hear you with the pain @MewithME and there don’t seem to be any magic answers but you may find something medication wise that helps a little, it’s just a case of trial and error really. Perhaps worth a chat with your GP? I found a low dose of Duloxetine which is an antidepressant but also used for Fibro pain helps a little but I did try several others before hand. It also helps keep my mood stable to enable me to cope better.
Also a pain nurse once suggested taking regular paracetamol on bad days rather than waiting til the pain kicks in as it builds up over the day.

Im so sorry you’re struggling just now, it really is a tough illness day in, day out.
I woke up after a bad night feeling like I’ve been hit by a bus at some point in the night. No idea why as I didn’t do anything particularly yesterday, It really is crap!

Thanks @TodayIsabetterone . You made me smile at least. It is indeed CRAP.

I'll do some googling! That isn't something they suggested before. I think it was nortriptyline they said was only alternative.

I'm the same as @TodayIsabetterone - 30mg of duloxetine and paracetamol as and when. My legs still get sore and achy but I am not in the pain I was in before. And the mood levelling is an added bonus.

Hope you can find something to help, @MewithME . I had previously taken amitriptyline and didn't like that it made me woozy. In the GPs defence, it was meant to help me sleep ...

Gosh you've got your hands full. Your poor Mum she must be so glad you're there. Hope Dstepdad is OK.

Have you ever tried acupuncture? It is very good for pain.

Yes I think offering amitrptiline or nortriptiline is probably GPs first line of action but a lot of people with ME are sensitive to meds and feel zonked tje next day! I didn’t get on with it either. If your GP doesn’t offer any alternatives then might be worth asking for a referral to the pain clinic but I do remember waiting a long time.

Acupuncture is a good shout @TeaAndStrumpets It halved the number of headaches/ migraines I was getting. My osteopath sometimes uses dry needling which gives me some relief with my shoulder currently.

Well after my rough start and painkillers I’ve come round enough to do a bit of housework though I may regret it tomorrow! Managed to hoover snd steam mop the kitchen and then roped DD in to hoover upstairs and mop the bathroom so feels a lot better everywhere.

Been in the garden with dippy dog… 21° today and glorious sunshine! So nice for October!