What are you up to today if you have a chronic illness? Thread 5

[MewithME]

Here we are again. 😊

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5458553-what-are-you-up-to-today-if-you-have-chronic-illness-thread-4

@FurForksSake i’m so sorry to hear this. I’m living with cancer and it’s been rough. Hoping for the very best for your mil.

Have had osteoporosis for years. Can't recall really, maybe 15 years? I try not to think about it to be honest. I take 1 tablet of Ibandronic Acid per month and try not to think about it. There was a suggestion I go on Prolia but I read about the side effects and refused. The tablet I'm on is quite old-fashioned and I will be perfectly honest I feel it's the least bad option because others I tried gave me stomach pain. I do need regular kidney function tests because it's not great for your kidneys, but nothing has been flagged up.

Like you I have a fear of doctors after some bad experiences and I just want the least intervention possible. Of course for all I know there is a new drug out that would be better. I haven't had a review since Covid. BTW I haven't lost height or had any broken bones so far touch wood! I get told off for being underweight because carrying extra weight is good for your bones, but I have IBS and numerous food allergies so it's tricky. I suggest you treat the chocolate as medicinal!

@MewithME I think we need our own support army on here organised by location that can sweep in and help out or even just bring tea and biscuits round!
Roping in DH's, handyman friends etc.
I think other posters have suggested it first though!

Such a great idea! It's good to be listened to, as well, so this thread is great.

Thanks @TeaAndStrumpets I too have been offered Prolia and refused. I can’t take bisphosphonates. Other choice something with a big bone cancer risk which doesn’t tempt me as my wonky blood cells are produced in the bone marrow Wouldn’t it be easy for them to get even wonkier?! 🙁 Am very stubborn and have already committed to a lot of exercise so think I might need to refocus on that. At least the consultant was open to my thoughts and didn’t push the drugs on me. Like you, I really want to keep away from it all as long as possible. Yes, will certainly carry on enjoying my chocolate, renewing my prescription regularly 🤗

Could the support army include a masseur/ masseuse please?
I've had some soup and back in bed with earthing sheet plugged in and frankincense burning over a candle...the scent always calms me.
Tomorrow will be a better day.
Thanks for the support.

Yes massuse a good idea along with the magic teapot and tea trolley.
DH finished all our chocolate supply last night which I could've done with after my hormones kicked off again.
Ran out of HRT in Jan, re-started and apparently that means a period every other week.
DH has made a lovely homemade pizza and watching Newcastle match.

Oh I hear you.
I'm rather older than DH ( who i love dearly) but he was diagnosed with a rare blood cancer, aged 50, and has not been able to work since ( PIP then ESA). I've been holding it together ever since, and it's bloody hard work.
He's got a review tomorrow and that always causes extra anxiety.

So sorry @Hedjwitch and @FuzzyPuffling that is so hard. Your love and support must mean everything xx

Another dodgy character at the door, this time wanting odd jobs. Same reek of fags. I think it must be a gang of Nottingham Knockers who periodically come round selling dusters.

DH is on the phone talking about cars and oblivious to the knocking! I would prefer any callers to think I'm not living alone!

Morning all. Things took a turn for the worse yesterday and ended up in A & E which ME wise is my worst nightmare. Finally got home after midnight completely and utterly exhausted but I didn’t really have a choice but to get checked out. After lots of tests to rule out stroke/ heart attack it was decided it could be a blood pressure issue, as they discovered it does drop when I stand or it could be related to my heart valve issues so they’re chasing up the cardiology referral. There was talk of keeping me in to speed that up but I really wanted to avoid that as ME wise hospitals are an utter nightmare.
Anyway I’m relieved to be home, safe and warm in my own bed with a very clingy sausage dog for company this morning.

Sorry to @FuzzyPuffling & @Hedjwitch for all you’re dealing with. I understand. My DH was medically retired years ago after an accident resulting in brain injury. It’s so difficult when you both have issues. He does incredibly well most of the time nowadays and we muddle along okay but he really struggled last night too having to be my advocate and as he looks okay, it’s not obvious to other people.

Oh no that sounds awful! You did the right thing going to the hospital. I hope your appointment for cardiology comes through quickly. Xx

My CBD gummies just came. Here's hoping they make a difference. Does anyone take them?

Thanks @TeaAndStrumpets I think it was the right call and I feel reassured it’s nothing too scary. BP much better today so just need to ride out the PEM now!
DH is supposed to be going away this weekend ( flights booked to Scotland to see DS and tickets for a match booked last Summer!) He’s not sure if he should go or not as worried it might happen again but I don’t want him to miss it. Teen DD will be around who can cook (or order takeaway!) so I think I’ll be fine. I just need to rest, rest, rest which might be easier in a quiet house!

Oh no @TodayIsatrickyone, hope you can get plenty of rest.

@TodayIsatrickyone having a quiet weekend sounds just what you need.

All this just goes to show how awful PEM can be. Obviously there is more going on with you and I hope you get thoroughly investigated. The GP can only refer you on and hopefully this will make him act with more urgency. When I was in hospital before Christmas it was reassuring to have absolutely everything checked out.

Rest, rest, rest!

Thanks @Stressybetty & yes @TeaAndStrumpets it does reassure you doesn’t it as we tend to put every weird symptom down to ME.
The PEM definitely complicated things and the wait in a busy crowded A & E increased the PEM tenfold as I knew it would. I was actually crying in pain and needed oramorph when I was finally triaged and totally lost the strength in every muscle so couldn't even transfer to the bed much to the nurses annoyance. She decided if I’d got in the wheelchair, I must be able to get out of it!

I could hear my DH desperately trying to explain about severe ME and how I needed to be lying flat and the noise/ light was increasing symptom severity but it seemed to fall on deaf ears. We were eventually moved to a quiet room where the staff were much more understanding and very thorough and did as many tests as possible without me needing to sit/ stand.
Anyway, it’s over and I’m relieved to be home and resting in my own bed.

It's time for the WEDNESDAY KLAXON!

I have finished for the week and am in bed with a cuppa. Better than that I have next week off so lots of time to recover 🛏️ ☕😴

And I need it because I have all my PEM symptoms and a blocked ear 😟

Still the sun came out this afternoon and I have my pottery class tomorrow ☀️

Have a peaceful evening all 💕

I am firing my first bisque in Brigid the kiln tomorrow.

I spoke to occupational health and she’s agreed for me to go back next week. No part of me wants to go back. I’ve been very, very upset. DH got the brunt of it when he got home as he didn’t message or check in on me or even come and check in on me when he arrived home. He forgot the meeting even though I was in bits yesterday.

OH have said 4hrs a day for three days next week, then use a week of annual leave, then four days of four hours and then a week of leave and then four hours for five days and then five hours five days and then normal.

I asked her about going part time and she told me to wait until the phased return in under way and I’m back and it’s all ok before bringing it up but that she would be willing to suppprt it if manager doesn’t.

I had one failed phased return @FurForksSake and one more gradual one where I never made it back to full time before they made my post (and me) redundant 😟

Sounds like your OH is very supportive. I also had a fit note from by GP saying able to work but with adjustments. Might be worth asking for one of those too?

Very excited about Bridget's maiden firing though 🔥

Yes me too!

Most of my female ancestors seemed to be called Bridget!

Hello everyone. Thanks @Swanhilde for the Wednesday klaxon.

I am doing the worst thing of pushing through this week. When your body is telling you no, but I don't know how else to get through my deadlines at work or my home life stuff when I have no support. Sometimes it's easier to just trudge through like an automaton and not think about it.

I've got another full on couple of days to get through until the weekend when I am rest.

I'm looking forward to just having a bit of a cry to be honest. I've been keeping it all in to get through it but I know I am not good.

@TodayIsatrickyone so sorry you had to go to hospital but glad you got out and home again. I feel quite frightened about getting old or getting worse with nobody to help me. I try mainly not to think about it. Even though it was hard for him, I'm glad your DH could advocate.

Right...I know there was something else to say but I need to conk out

My post was hidden but was only asking about gummies and if anyone takes them?