What are you up to today if you have chronic illness? Thread 4

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5438353-what-are-you-up-to-today-if-you-have-chronic-illness-thread-3

This is the bumper Christmas issue with the added challenge of all the work Xmas brings and feelings it might bring up...but we're here. Highs and lows. 🌲🌲😴🤕🤗

Morning! Sorry for sciatica symptoms, I’m surfacing that too and I think mine is overdoing my physio exercises for my hip. Ouch!

@FurForksSake I have been overdoing one of those little hard balls that you lean into (not the spiky ones) so that won’t have helped!

Put in an econsult at 09.30 re my increasingly painful hip (I'm hypermobile), face to face physio appointment offered at 16.00 today.
Can't complain about that service!

That’s an impressive turn around. As a fellow very hypermobile, do make sure they know, so many nhs physios just don’t seem to get it.

Absolutely get this! Luckily the physio is attached to my surgery and they are fully aware. I have an EDS diagnosis along with related issues so I'm very good at advocating for myself in these situations - we have to be, don't we? I had specialist physio and OT after my initial diagnosis and they were great at making sure I knew what to say, plus an excellent yoga teacher who made sure she really understood what I needed.
Thank you for the reminder, though

I’ve got to get an EDS assessment this year, I meet all the criteria I just can’t get to see a rheumatologist. I have bupa so I’m hoping I can go that way.

Brilliant service @Songlines After holding on the phone first thing for 30 mins I managed to get a face to face appointment for DD this afternoon so I was impressed at being fitted in promptly. She’s got mocks looming so want to get her checked out as she’s been ill a while now.

@BerfyTigot I get that feeling… I had a cleaner for a while but stopped over covid and then realised we were sort of managing actually.
I do think sometimes shall I look for another as I used to love it after she had been and everywhere felt clean but then I remember the feeling the day before of having to put things away so she could actually clean! It could be a challenge on a bad today too to cope with someone else in the house. It’s a bit of a swings and roundabouts situation isn’t it!

My referral was initially turned down then my GP asked me who I'd like to see. He then contacted the consultant directly 'for advice' and was told to refer me directly. But that's 15 years ago so I suspect things have changed since then. I think you can ask for a second opinion. Look on the EDS FB page for ideas

Back from the osteopath so feeling very pummelled! He certainly hit the spot. He’s had a go at my neck too - I did yelp a bit! Back next week.

Still no repairmen for the phone, I hate to think how many voicemails have built up since December 19th. Still debating which disc from my box set to watch tonight. Probably Shall We Dance. DH is being very tolerant, poor man. I find black and white films very comforting.

I'm being boring. I did a wash ( and got it dry on the line), went to the post office -dangerous slippery pavements- pottered about and lit the log burner.

Still in bed here with a hot water bottle. Think I'm still in a crash since Christmas to be honest, although feeling slightly better.

Have got into a bit of a pattern of sleeping in till lunchtime, resting and reading a bit online in the pm, then having a bath about 4pm then dinner. DH is helping a bit and one teen is away on a school trip so don't need to worry about them.

Have sent MIL a text saying not up to meeting for the foreseeable due to the ME / CFS and she will need to contact DH if she needs anything. No reply. Feel a wait of my mind though, mentally.

Hope no-one is struggling too much with the snow etc, take care with the ice and stay warm x

@Orangesandlemons77 you are doing exactly the right thing, your MIL situation sounded very stressful. You need a break and to build up your energy reserves. I am so pleased to have Christmas over, two sociable occasions a few days apart and it was nearly too much for me.

Back from work. That is all 😴

Well done @Orangesandlemons77 for both listening to your body and resting as you need to and texting MIL. Absolutely the right thing to have some space and focus on what you need not everyone else’s needs. Hope that doesn’t sound patronising to say well done but I know it’s not an easy thing to put into practice! I honestly wish I’d done this more many years ago when first diagnosed as it took me a long time to learn that was the best way to manage this illness.

Such A long time to have no connection @TeaAndStrumpets you are being amazingly patient! Thank goodness you have a supply of DVDs!

Hello everyone. Back to work today but thank goodness from home..I feel absolutely wiped out already from the effort.

I'm in bed already so trying to feel grateful for being able to do this.

DS back at school tomorrow..not looking forward to an icy school run at all.

@TeaAndStrumpets you are so positive and patient. I love how you have made the best of your no internet days! Hope it's back on soon though. I would be pestering them so much!

@Orangesandlemons77 well done for looking after yourself!

I'm going through snuggle up for an hour before making tea.

@MewithME I am not feeling patient deep down! I keep checking all the weather forecasts to see when the repairmen might be back . It did snow today which was not forecast at all so that could have put them off. I must say the way they’ve left the pole doesn’t look safe to me. There is a big junction box and a lot of wires exposed at the bottom, with a coil of wire hanging from one of the footholds half way up the pole. Around the bottom of the pole there is one of those orange collapsible barriers that looks like a wind break. Just as they left it before New Year. I’m mentally totting up the compensation from EE. £10 a day which is a joke considering it was over Christmas.

Oh dear bit of a rant there. I just think of how much money these companies make - you’d think they could give a better service.

Absolutely. You can have a little rant. Id be going bonkers.

I was promised they'd wave some stupid feet when I sorted my broadband contract out and they charged me anyway. I just can't be bothered to deal with it.

You know when they tell us being disabled costs more, I bet they don't recognise these minor decisions. I've paid hundreds of pounds just because I'm too exhausted to deal with corporate incompetence.

Fee not feet!

Thanks @MewithME it is worse than the actual problem sometimes. The Service Status Checker tells me the problem was being fixed at 9am today, and to expect excellent broadband by 7pm! I look forward to that….

Hi I’ve been lurking for a while but just wanted to vent for a minute to someone who might get it. I have had ME since childhood, the GP said I have EDS a few months ago and I have just been diagnosed with Osteopenia.

Saw the GP today who prescribed Calcium/Vit D tablets and recommended weight bearing exercises. My T score was -1.9 for spine and -2.3 for hip. I’m feeling overwhelmed with another new diagnosis, especially when the treatment will impact an existing condition!

I work part time and have just about got myself to a place where I’m not off sick all the time. I’m dreading the stress and upheaval of trying to find a balance that will inevitably go tits up the second I get a cold or overdo it.

Deep breath! Thanks

Hey @SugarCookieMonster . Nice to have you with us.

God that must feel quite overwhelming. I know I was told that I should see the physio about my knees. I had x rays which didn't show anything but they're so painful and I'm struggling with stairs. I haven't been yet. I know the impact will be too great to keep me on an even keel so I'm choosing to ignore the pain for now.

I am also probably going to get a bone scan when I feel up to it. My gran had and my mum has osteoporosis.

My mum struggled with her stomach when taking calcium tablets. Hope they're ok for you.

I don't know enough about EDS. I was told I was double jointed as a kid but nobody ever flagged it as being an issue. Now I have an MEcfs diagnosis, I keep seeing it pop up more and more. How did the GP diagnose it if you don't mind me asking? Do you get dislocated joints a lot? I don't get that so maybe I'm just hyper mobile.

Physio and MEcfs is daunting. Take it step by step and don't push more than you feel able to. You'll have to talk to the physiotherapist and see what they say.

@SugarCookieMonster welcome! I'm very new here but it's such a warm, gentle and supportive place. Perfect for when you need to vent about how hard life is sometimes.
I've had an emergency physio appointment this afternoon because of sudden deterioration and pain in my right hip. I, too, have EDS so it turns out that I'm so used to the pain that I hadn't noticed how much worse it had got. I've just been diagnosed with chronic soft tissue inflammation around the joint and down my thigh to the knee. It's all such a juggling act, isn't it? I wish we could all start again with a clean slate, the knock-on impact of one thing on another is exhausting.

I was talking to my physio about this, I’m never pain free, never not struggling with fatigue and brain fog, I’m always subluxing my joints or spraining / straining / twisting / falling / banging / tripping. My pots type symptoms are being really annoying at the moment and i keep getting palpitations. It’s literally never nothing. It’s never a zero day.

@MewithME thank you!

It’s so hard trying to get the balance isn’t it. Knee pain is awful, such a grating pain.

My family all have Osteoporosis and most of them quite young so I wasn’t too shocked. The scan was actually one of the nicer ones I’ve had so it was more the getting there and waiting around that had an impact.

I had ‘clicky hips’ as a baby and had a check when I was in Primary school (which DM said consisted of a Dr watching me walk and saying I was fine 😂). I was always quite bendy and get comfortable pretzel’d up. I have a history of tendinitis, snapped tendons (in my knees!) and joint issues (thoracic outlet , sacroiliac, TMJ). I noticed I have quite stretchy, super soft skin and I had a bruises that lasted months (my longest was a deep one that took a year to go). I’d been back and forth to the GP with vertigo and nausea over the last 3 years too so it all seemed to make sense. I don’t get joint dislocation, more injury to those areas!

I mentioned it to the GP who put in a referral to Rhumetology. They wrote her a letter back saying they didn’t need to see me and based on her examination I was likely at the mid point on the EDS spectrum. GP gave me some links to info sites and said to come back if I get an injury that’s not healing right.

They haven’t referred me for physio, just advised I do weight bearing exercise. The GP looked at me like I was an unexploded bomb when I told him that might be tricky due to the ME 😂 He didn’t want to open that can of worms!