The Challenges Of Finding Solitary Refinement ..

foxgloves

@another_casualty, Yes, it's a complex condition, exactly as you describe. My Mum had reached a stage where it was well-managed & her neurologist had told her that it was 'stable', neither improving (because there isn't a cure) or worsening. She was 65 when she was diagnosed. Her eyes were affected, too. In fact, she'd known for some time that something wasn't right, but her GP kept telling her it was arthritis. It was her optician, who during a routine check-up said that there was something not right with the muscles of her eye. GP still said it wasn't anything. Diagnosis happened when symptoms were getting worse & she'd had a bad week with her breathing affected. Dad booked her an emergency GP appointment & by lucky hap there was a locum Dr there. He listened to all her symptoms & said 'I think I actually know what this is' & told her about MG, & how GPs might see only a single case in their whole career. He told her to go home & pack a bag & got her admitted to a neurology ward that same day. The rest is history. She did indeed have it & it is a difficult one to explain to people as they have never heard of it & it is as you say, a hidden disability. I actually think Mum had a single outlier symptom about 3 years earlier when for some otherwise inexplicable reason, she was completely unable to hold her arm above her head, say to brush her hair, but it had righted itself in a couple of days & it was much later before the whole gamut of other symptoms appeared. Anyway, enough. It's just that I know from Mum's experience how little known this illness is, so on the very rare occasions I encounter someone with it, I can at least say that I do understand & know what it is.
F 

another_casualty

Thanks @jwil @doingitanyway @foxgloves🦊

Regarding my myasthenia gravis ( briefly ); I had a bloodshot eye which I ignored for sometime. Pharmacist told me to go to my doctor 👩‍⚕️..my doctor told me to “get the hell down to moorfields “ I was misdiagnosed with bells 🔔 palsy and instead of going back within the six months I waited until the appointment to be told the bad news . A day and a half involving cat scans etc 🐈‍⬛ Enough of that , only to say that I have to pray that universal credit/DWP don’t stop the awards and make things difficult 🤞

Felt much better in the evening . Had a great sleep 🛌🥱..until 4.20 am.
I managed to get out for walk🐾 .

It was tricky as with no broadband Amazon didn’t recognise me signing in from my 📱 phone
Im expecting something which will be in the evening . I damaged my headphones 🎧 and a replacement is coming .
I will take present pair to post office ✉️

I just sent text to electrician asking him to contact me when not busy to discuss light fittings.  What’s happening is that there is a delay when I turn switch on .
I’m expect light switch to bang , possibly fuse. Hopefully it’s the fittings that need changing and not something more expensive 🙀🤞

I couldn’t mirror the phone 📱 to 🍏 Apple TV 📺 so no car tv today . Sad really 😼

I cannot get mr trainer’s video workouts either , so I’m not best pleased 🏋️‍♂️😾

I’ll leave it there ..🌧

MrsPorridge

Ac sorry to hear about no internet, its a right pain when that happens isn't it?  I seriously wonder how we ever managed without it - but we did   Hopefully you will be back online soon.

MuffinTops

Hello AC.  Just found your new diary.  I'm so pleased you started one rather than stop altogether. 

So now I have 8 pages to catch up.  I'll get onto that now!

I hope all is well with you and I'll comment again once I'm caught up on your shenanigans.

another_casualty

Still no internet !😾
This means that I could not do video workouts 🏋️‍♂️. Also  couldn’t watch you tube vids etc or my iTunes library which is on my main iMac 🖥 
This means I’ve sent text to mr trainer 🏋️‍♂️Asking to move tomorrow’s live session to either Friday or next week,
Something that is annoying and something I didn’t expect . 

The annoying thing about it is , when I woke up 🛌 around 12.45 am till around 5am the broadband was working. 

Even when I was having my breakfast 🍳 

I managed to get out for usual walk🐾 despite feeling rough again 🐕

I had text from dentist 🦷 reminding me of appointment for tomorrow with hygienist and dentist 🪥 
As it’s 5 months and not 6 months ,I decided to cancel . The earliest my next appointment with both is mid April . 

That’s fine with me , as I feel that 5 months is extracting the urine. 

My speech was making it difficult for receptionist to understand. 

Something I’ll have to mention to job coach next weds . 

Not looking forward to that .

For some reason , the door on the freezer compartment of my fridge/freezer never closed properly the other day . 

The ice cream 🍨 was kind of salvaged but I decided to throw away the poultry
It may be foul for all the wrong reasons had I had it 🤢🤮

This of course unfortunately led to another food shop🛒from haterose which will be here mid morning tomorrow 

For some reason it feels like Thursday instead of weds . 📆

I’ll drop off headphones 🎧 to post office 📮tomorrow. 

I’ll leave it there ⛅️

doingitanyway

Sorry you still have no internet. Infuriating. Hope it is back soon.

MuffinTops

Hello AC,

I've managed to catch up now and it seems mostly positive (except the forbidden Green & Blacks).  Sorry to hear your internet isn't working which has scuppered exercise plans when you were in the mood to get that done.  Well done for keeping up with it in this horrible cold and gloomy weather too.

Thanks for the advice you've given me on my diary.  I've bought some White Spirit so just need to get that floor clean now.

MT

another_casualty

Thanks @MuffinTops   @doingitanyway😼
The broadband is flickering on and off so to speak . It is working now , but pack up again at anytime . Last night it worked on the iPad in bed so I could listen to my ambient stuff going to sleep 😴

I received a text from mr trainer 🏋️‍♂️And he gave me a list of exercises to do which I did.
We have a live session booked on Friday afternoon subject to broadband etc 
I may see what local friend is up to , and may cancel . We'll see . 

Regarding the bathroom lights ; they are deciding to delay lighting up - but no bang on the switch or one of the fittings which I'm expecting ! Mr electrician must be busy . Maybe his broadband has packed up also . I'm obviously hoping it's one of the, light fittings that packs up and nothing more costly ££

Next month will be a dear month due to contents insurance, boiler service and service charges , 🙀although service charges are end of month and not sure if boiler service is March or April .  Plus the electric bill which will probably be next week . 

Everything should be manageable 🤞

I'll leave it there 🌨

another_casualty

Broadband intermittent still ..
I'm getting mixed results with using iPhone 📱as personal hotspot . 

The engineers are working on it around the corner . 

Sleeping was again patchy 🛏. Having said that I went down to post office to return headphones to the Amazon 🎧. It was a different person behind different counter .
Both wearing 😷. I didn't seal box this time , as on Monday I packaged other box too much and the nice customer service assistant advised me not to use so much tape and I was given some by her to pack . The customer service person today was very hard to understand and I didn't tape box up fully as I expected them to tape label onto box etc
I think it's safely on its way . Having said that , I got replacement pair and proof of postage so hopefully I'm over worrying about Amazon terms and conditions returning stuff 

I received phonecall from my surgery 📞. I have a blood test on sat morning .
I received a text from shore medical and I have an appointment with a doctor 🩺mid March to review long term condition . Hopefully all willl be well 🤞
I notice that the Drs except 2 are all different and that my initial replacement dr is not at the practice . Very confusing . 

I received haterose delivery this morning 🛒

It was raining earlier , but blazing sunshine now . 

I'll leave it there ...🌞💧

MrsPorridge

Good news the engineers are actually working on the internet, hopefully won't be too long until service is resumed.