catch up : 22.03.2021 …

Fortnightly Catch Up 22.03.2021 …

Well all I can say is the previous two weeks have been really rubbish. I’ve had some super bad days, to the point that I’m scared I’m getting to the end of no return … starting this Monday I’m trying to implement some form of pacing using my FitBit. Actually I started a few days ago Monday’s are always my official start days LoL sick I know!

* Don’t forget whenever you see MiA … it means I have been unable to journal anything on that day due to serious illness or just because I was unable to do anything, except keep my head above water, on that particular day.

What’s New …

Saturday is the Introductory Workshop for my new programme. And setting up zoom is hard. In my former days I was definitely a whizz at IT but now I can’t hold a thought long enough to know what my next step is. So trying to get zoom on my TV has been exhausting. Still not there but I won’t stop till I’ve exhausted all avenues.

What’s Important …

The most important day in this fortnight, for me anyway, is Saturday (13.03.2021), when we, myself and my husband, take part in the Introductory Workshop with the Yorkshire Fatigue Clinic. I will save my energy so that I can document this thoroughly.

Diary (08.03.2021-21.03.2021) …

Monday …

Getting out of bed to make myself my first latte of the day sends my HR sky high, consistently over 100.

Need to work into my new regime a means to make a latte quickly and easily in order to start my day off less high active.

Tuesday …

MiA …

Wednesday …

MiA …

I am just so unwell right now. You’ll see from my post ‘anaerobic threshold & ME …’ that I’ve been trying to use my FitBit in order to pace better. But at the moment my HR is rising over my AT by my just sitting up in bed.

Thursday …

My husband has changed the bedding today and I’m meant to be having a bath so I’m not ‘dirty’ in the clean bedding. But … I really don’t know if I can actually have one … It’s 13:45, as I write this, and I still feel like utter shite.

I had a bath and ended up so exhausted and frustrated at not being able to do what I wanted that I ended up crying. If you knew me in person you’d know I don’t cry often. All I wanted to do, or needed to do, was simple things like wash my hair, shave under my arms and my legs, which haven’t been done in months. And I couldn’t do it. I was shaking internally and as weak as I’ve ever been. I really don’t know where this is going to end up …

It’s heartbreaking …

Friday …

I had a terrible night last night … awake all night and extremely upset too.

So today I was MiA BIG TIME …

Saturday …

Today is the Introductory Workshop session for my STEP Programme … and just to make it really hard I woke up with a migraine,

a – f * * k i n g – g a i n …

Please see my healing journey : 13.03.2021 … blog to read about this workshop.

After the workshop and documenting it for my blog I became really poorly and have to go to bed and sleep.

Sunday …

What a surprise! I woke up today not too bad. I mean any normal person would think they were seriously ill if they woke up feeling like I did today. But for me, and also taking into account yesterday and how I’ve been feeling of late, today wasn’t too bad all.

I just felt ill not like I was dying, which was actually nice. And so I even watched a film, Bohemian Rhapsody.

BUT around 17:15 it all came crashing back down and I feel like I’m dying again. Oh well, such is life with ME. It was nice to feel just unwell for a little bit of the time for a change.

Monday …

Woke up today feeling utterly awful. But, I was determined to do some admin on my website. I needed to get a subscribe form that was attractive to visitors. There doesn’t seem much point in me putting in all this effort to write great posts and no one read them. Yes, it cathartic but I still want to encourage and entertain people too.

Tuesday …

Bloody hell PEM is an absolute bitch …

Woke up mega pooped and my FitBit had ran out of battery so I got up, made the bed, and had a mini wash and put clean PJs on, nice huh? Now I’m flat out and feeling rubbish. I knew I was above my AT but I carried on despite feeling breathless, sweaty, nauseous and unsteady. And now I pay the price. I daren’t put my FitBit back on because I can feel my heart pounding! 

… c’est la vie …

Southwaite Sunset 17.03.2021

Wednesday …

Had a terrible nights sleep. Well actually I only slept for 39 minutes according to my FitBit. I do recall feeling extremely fitful in my sleep and kept waking up dripping in sweat.

What’s wrong now … not something more to deal with. I only ever sweat like this if my body is trying to deal with something.

D O H : 19:45  I just realised that I did all that stuff yesterday without my FitBit on and ignoring the physical symptoms. This is the price I pay.

I am staying in bed all day today …

Thursday …

MiA …

Friday …

MiA …

I was completely out of action yesterday. So poorly I thought I was dying again. Today I’m out of action, but not dying. Still in bed though. And I get a phone call from my GP asking me to book my Covid Vaccination. I’m too poorly to have one and I really can’t risk making myself any sicker right now. I honestly believe in the depths of my heart and soul that I could die if I added any more burden to my body.

With those feelings in mind, it would actually be nice to hear from my ME team and my GP to find out how I am, and to find out why I feel too sick to have the vaccination. But they’re not really interested are they?

I’ve been forced to pay for my ME treatment because the CCCG refused my funding to be referred out of the area claiming I could get my specialist care needs in the area.

they’re having a laugh … let’s hope none of them get severe ME …

I’m guessing it’s pretty obvious how I feel about the care I don’t receive from my local NHS …

Saturday …

Got up today, not too bad. I mean in terms of a normal person’s health, I was utterly shit. But, in terms of how poorly I have been of late. I wasn’t too bad.

So, I had a much needed bath, washed my hair, and changed my PJs. And yep, that’ll do it, it was enough to floor me for the rest of the day.

Oh My … I am so so fed up of always being so poorly … I cannot put into word how shit things feel for me right now …

Sunday …

MiA …

Southwaite from my window 21.03.2021

 fragmented.ME xXx