The Challenges Of Finding Solitary Refinement ..

another_casualty

Strange , pleasant day .
My local friend and myself shared a few Guinness 's .🍺🍺🍺 More than agreed . My poor friends arm . Twisted a lot somewhat . 

My breakfast was done with hesitation / hesitancy . This was because I only had a couple of slices of bread left 🥖. Ah yes, I was going to quit that . In my defence it is ' artisan' and best quality allegedly . Anyhow , my breakfast was 1and a half slices of brown bread ,marmalade and black coffee ☕️. The method in my madness was that I had a toasted bacon sandwich on my return from the pub . 

Later on I fancied scrambled eggs and potato waffles 🥚. Well, only one scrambled egg as I ran out . Memory shot . 

This means I managed to order another online shop from haterose for tomorrow 🛒
Green and blacks almost gone . Bacon almost gone . 

There was less to order this time , but  with someone so ltd I had to act fast . 

Speech all over the place today . What's the betting I'll be talking like Prince Charles on Tuesday at the job centre ? 👑

I'll leave it there ...☀️

doingitanyway

A few pints of Guinness in the sunshine with a friend. What's not to like?
Hope your speech has returned to stable?

dreaming

Hi AC - glad you enjoyed your drinks with your friend but sorry you have been struggling with your speech. It turns out I have the ACHR antibodies, but no thymoma. At the moment pyridostigmine seems to be doing to trick for the vison, speech and swallowing problems I experienced, and I have slowed right down in my day to day living.Hoping to avoid the progresson to steroids. Still under investigation for various other things (non-myasthenia related) that have shown up in all the scans I have had but the NHS has been amazing. I know others don't always have the same experience but I really am impressed.
Knowing now what I know about myasthenia, and experiencing some of the effects, I wonder how on earth you managed to continue working for as long as you did - especially travelling across London. Even a trip to a garden centre with my daughter for an hour or so can wipe me out on a bad day, and on a good day I feel fine as long as I do little more than the basic housework for my little bungalow. You have come a long way since your first diary on here and hope all the job-related interviews etc. go well for you, and you finally decide on your room re-shuffling.. All the best - I'm off now to search the neighbourhood for one of my cats who has gone walkabout for a couple days.

another_casualty

Thanks @doingitanyway and @dreaming 😼
Most important part of this post ..find the cat ! 🐈 Try nextdoor website and put flyers up if need be . 

@dreaming pm me if you have any concerns etc . Regarding your nice post; 
pyridiostigamine , and Azathioprine are the most important 2 for me . Plus D3  1500mg
and another one which helps with digestion. Thank the Lord I'm off the prednisolone! 

I was out for my walk today 🐾, and I was thinking coincidentally how grateful I'm away from that horrible place in Londonistan where I was employed as a walking gas balloon 🥵🎈
especially in this weather . ☀️ 

I think that my situation at the time turned into a plot . ( painting the flat sweating like a breathless bloated whale 🐳/ taking fantastic advice from all on first diary/ and saving my holidays to give 1 week notice and get away from the tension etc) 
This gave me the chance to do one right thing and stick to it 🏋️‍♂️🐾. I'm lucky because my symptoms are ' mild ' in the scheme of things . 

Regarding the speech , there was a gel type stuff that I put in my food which the speech thereapist which I put in food to prevent choking which was worrying to say the least . 

The other thing regarding speech issues; they'll always be there but randomly . I'm going to be worried tomorrow seeing latest job coach and tbh I would prefer if it was slurry tomorrow , then she'll see I'm not lying etc. 
I will have issues in the future in my situation regarding proving to DWP that I'm actually suffering with a condition . Plus other things mobility wise when I get older, but I won't dwell on that . Hooefully the training 🏋️‍♂️and more calmer lifestyle will see me through .

I'll leave it there ..☀️😼

jwil

I know nothing about your condition, and I keep meaning to read about it, but I admire how you handle all the challenges that you face, and it sounds like there are many!

another_casualty

jwil said:

I know nothing about your condition, and I keep meaning to read about it, but I admire how you handle all the challenges that you face, and it sounds like there are many!

Thanks @jwil😼
complicated illness , but similar to a stroke . From the stroke family so to speak .
Autoimmune / motor neurone condition combined . 

Cheerful stuff 😼

another_casualty

So another hot sunny day ☀️

I went for usual walk 🐾, but was unsure at first whether to do so due to travelling to job centre later on . 

Here's the long important part of post ..

Went to the job centre for my appointment with job coach ..
When I got there the lady who approached me advised me that the appointment was upstairs . I asked where the lift was , and was told it wasn't working . Unusually for me I let out a sigh ☹️. She did advise me that she would ask job coach to come down which she did. I immediately apologised, and she was great . Now onto job coach ...

Job coach came down and I immediately apologised , and she was very understanding . 

She talked to me about my ltd capability for work award ( LCW) . She then said there was no need to send fit notes and didn't understand why I did . I explained that I had 3/4 notes in my journal explaining that if a new one was not provided then I'd be deemed fit for work etc. she was shaking her head , but I explained that I'm scared I'd lose everything if I didn't go by instruction . I don't need to get anymore , so it seems like auto -pilot stuff on journal ..

As she was looking at me , she did mention that " you can see that you are LCW" more or less saying you could see by me so to speak and that I'm genuine .
Nothing was mentioned about work searches / my experience with career coach / computer course that never happened . 

What she was asking at this stage is do I still see the doctor 🩺. I explained that I have blood test every six weeks . Also that as we all know that it is nigh on impossible these days due to amalgamation plus lots more . November was the last time due to stomach issue and I told her it must be covid jab and not having anymore . That is when dr gave me fit note until May , and then got another one then by phone 📞. Maybe I shouldn't have mentioned the phone part but I'm too honest . 

She asked about things I'm doing to help with my condition . This is when I mentioned mr trainer 🏋️‍♂️. I explained video workout and helpful phone discussions asking about my well being and putting me in the right direction . She asked how I found him , and I explained I joined local gym and that when he said he was going to Bournemouth I told him I couldn't travel that far ( a lie because until covid I did go there ) . I explained that he was doing video workouts and that he is concentrating on my condition etc and told her I pay monthly for it ( 🤦‍♂️?) She liked that and understood it is "tailored to my needs ".

She did say that I will be getting reassessed 😾as I expected.  I did mention that I'm overdue due to backlog 🤦‍♂️And that I expect them to tell me I am fit for work 🤦‍♂️

There is a slight thing that may work in my favour 🙏and that is a phone or video assessment. 

I think / hope she believes me . My cvs that she has is basically overload from 1979-2016 and less than 6 months unemployed in that time . Apologies for repeating 🦜

one final thing for now tying this up 📿 is that my next appointment is in 3 months " work search " appointment . I assume that all the stuff I prepared for today will be discussed then, but as I pointed out to her I'm not used to this but always mean to be polite and basically go by instruction / do as I'm told . 

After that , I can only hope for the best . Life is crap and I'm another casualty ! 

Anyway , I'll leave it there ...☀️😼

jwil

another_casualty said:

jwil said:

I know nothing about your condition, and I keep meaning to read about it, but I admire how you handle all the challenges that you face, and it sounds like there are many!

Thanks @jwil😼
complicated illness , but similar to a stroke . From the stroke family so to speak .
Autoimmune / motor neurone condition combined . 

Cheerful stuff 😼

Thank you for that. 

jwil

Sounds like it went quite well with the job coach.

another_casualty

Strange time ..
Still sticking to things best I can . A mixed bag there . Various thoughts and emotions going through my head at random times also . 

I have thoughts that come to the forefront ( is that a word ?) at times on a more regular basis , that reality hits me and I realise I'm isolated from more or less everybody . 

Is this normal ? I'm not unhappy but I took a hell of a risk somewhat . 

When I last saw my local friend over a week ago as we were walking to the quay for a few ciders🍺🍺, I did mention the contrast of six years ago pent up with frustration and anger about the heat and commuting into a wooden airless box . 🥵
I sure do count my blessings . 🙏

Regarding mr trainer 🏋️‍♂️; he saw me with my Vest on doing the  video workout with him , and he was very impresssed with the changing body shape . 

I have to ask his opinion on weds regarding a discovery I made regarding my heavy legs ..

on Thursday night I decided to have a Google about my legs , as they have been like 2 anvils since I got myasthenia gravis . I actually found something that has helped me immensely .  I actually did this in bed 🛌. I started to turn my ankles in a clockwise motion
( not the whole foot 🦶 ) . Within minutes I felt a nice warm feeling through the legs .
I have been doing this for a couple of mins here and there, and believe it or not my legs feel a hell of a lot lighter . Sure I have the bone and joint pain , but it seems like a big improvement . I had a walk🐾 this morning , and apart from the first few mins of pain I seem to be able to move quicker with a spring in my step 🪜. I'm wondering whether it was bad circulation , varicose veins or what ? Hopefully mr trainer 🏋️‍♂️can throw some light on it .  

Still thinking of solutions to bedroom 🛌&home home office/ musicroom . 🖥🎵🎹
I think it comes down to whether I get a new wardrobe , or bed . Long story . Too long for this post but progress has been made . 

Regarding job coach ; the next meeting in sept is when I start being pushed into doing stuff I'm not able to do . All I can do is attend , be polite and hope I can knock back any thing hit in my direction which will cause anxiety and stress . We'll see .

My next bill from Vodafone is £6.95 or thereabouts ( mobile 📱/ broadband ). 

After that, it's back to normal in July . 

As for EDF, both of my tariffs expire end of July and will then go on standard variable for a while . 

I'm hoping that I can get warm home discount this year , as I forgot to claim last I'm checking the website so hopefully I'll get it . 

Anyhow, I'll leave it there 🌦🌧