catch up march 2022 …
Catch Up March 2022 …
Another new month and I’m not feeling any better. Nor am I feeling any more hopeful. But, I am plodding on.
If everything goes as my husband’s work company has planned, I am afraid that by the end of this month I am going to be alone all day again and probably expected to do more than I actually can do. I really can’t wait … not!
* 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 …
I am finding this monthly catch-up method much better suited to my level of illness. Not much has changed regarding this, except I am a lot more sicker and can do even less for myself. So the more I minimise my doing, the better I feel … I wish … no the more I minimise my doing, the better chance I give my body to work on recovery and healing!
I am now fully setup downstairs for personal washing and changing my PJs. I have even put two sets of emergency outdoor clothes in my downstairs cupboard. However, by the time my husband goes back to being office based I need to be able to make the bed on week days, either before I go downstairs or be able to get back upstairs again to do it, which really does defeat the whole object of setting up my things downstairs.
… 🤬 🤬 🤬 …
I am sure that being alone all day and not worrying about what someone else is thinking of me ‘doing nothing’ all day will definitely have some positives on my body though. Because, I have noticed that I regularly ‘overdo’ and ‘underdo’ just because someone is ‘watching’ and in my mind making judgements. I cannot cope with being judged.
Trust me … I know how sick I am … the clue is in how I feel … I behave accordingly … as do / would you …
It will be a time to breathe …
What’s Important …
To know that Rolling PEM is when you don’t recover fully after each day or crash, and the PEM accumulates gradually over time. This accumulation of PEM means you get progressively worse over months or years as you fail to recover completely from each incidence of overactivity.
This is where I live right now and I cannot find the space to do nothing in order to end the rolling PEM.
I cannot setup on the pacing because I literally do not do a thing. So unless I could be cared for 24 7 I have no idea how to stop my deterioration.
YIKES … this feels scary …
Diary (March 2022) …
1st …
I do feel physically much better than yesterday. But, today I have horrific tinnitus. It’s like a massive alarm bell screeching in my inner head or ear hole! I can’t work out which but it’s annoying, stressful, and alarming … LoL …
yes … I can still joke … that was a joke … right …
alarming … sounds like an alarm bell … you do get me right …
… 🤫 …
2nd …
Today is the first day in a long time that I have had to make our bed. It was hard. But it’s what is going to happen in April, every single weekday, so I need to get used to it. Unless I can get used to leaving it and also cope with the volcanic stress explosion that will be unleashed on me because it’s not done! Or maybe I just won’t give a f**k!
Today is like this because, my husband had a meeting out of town and had to leave fairly early and I felt that I had no other option but to make the bed. Well I guess I did. I could have left it. But that’s not me.
Breathe … Relax … Latte … Croissant … Relax … Breathe …
I did the breathe … I relaxed … I had the latte … I cannot eat a croissant, they make me ill … but I did feel much better, and relaxed, for the breathing and the latte …
… breathe … relax … latte … croissant … relax … breathe …
3rd …
I had a really bad night last night. I went to bed feeling extremely nauseous and like I just needed to vomit. I woke up several times feeling just too poorly. And alone. No one is ever there for me. Eventually I gave up and got up at 05:00.
o oh … this is not a good thing for tomorrow… I will probably be super poorly tomorrow …
… 🤦🏻♀️ …
4th …
Today I found out that someone very close to me is not to be trusted. He is sly, duplicitous, and withholding. I feel angry and sad regarding this. I need this person and that makes me extremely vulnerable and so transparency is paramount.
… 🤦🏻♀️ …
why oh why do people think they can do this to me … I need to start being more solo, more singular …
… duplicitous you …
you’re duplicitous
deliberate deceptive
in speech and in works
5th …
MiA …
I had a dreadful night last night. I only slept two hours. I’m going to be so poorly tomorrow.
…
6th …
MiA …
… 🛌 …
7th …
MiA …
… 🛌 …
8th …
MiA …
… I am so poorly …
9th …
I do feel much better today. That said, my RHR says not. So, I am going to behave as though I am having a super super, normal for me, bad day and hopefully I will benefit from doing that.
… 😊 …
10th …
MiA …
11th …
MiA …
12th …
MiA …
… 🤦🏻♀️ …
… why are some people so ready to judge me so unfairly and very harshly …
13th …
On Friday gone, I received my PiP renewal form.
Needless to say I am now living in a state of stress, until it’s completed.
It took me an endless amount of energy to get my previous hard copy application from my breaking iMac and onto my iPad. I have iCloud storage but for some reason because the document was associated with word on my iMac this was the only document not available to me from files on my iPad.
So, this morning, I have set up my template pages with all the information from my original application and I will go through the sections and questions individually, changing details accordingly.
My plan is to do the more simple sections, (1, 2, 4), first. Then next week I will take a couple of points from section 3 each day.
ha ha haaa … as if that’s going to happen … I expect it will be one point and then 3-5 days off needed before I can physically try another point or two. I only have until the 2 April to return it, so I expect I will need an extension. Because the timeframe they have given me, I would need to do at least three points each day without a break and I simply cannot manage that.
I am also in the middle of a blog, which I have had to add ten days to now. Otherwise I wouldn’t have completed it and it would have posted half done and in draft mode.
… 🤦🏻♀️ …
14th …
MiA …
… 🤢 🤮 🤢 …
15th …
MiA …
16th …
MiA …
17th …
MiA …
18th …
MiA …
19th …
Still very much MiA …
20th …
MiA …
21st …
MiA …
22nd …
MiA …
23rd …
MiA …
24th …
MiA …
Completing the PiP form has absolutely killed me … I expect I will be missing for some time …
25th …
MiA …
I had a neurology telephone appointment today. To make it extra fun … NOT … they rang my mobile, which always always goes straight to answer phone because of poor signal, instead of ringing the requested landline call. It got to be half an hour late and I thought I better check my mobile, just incase. I have to go upstairs, with great difficulty, to get a good enough signal to check. And yes, they had tried three times. So, I rang them and asked if they could ring the landline. Eventually she did. But, it wasn’t a good call and the medicine they want me to try sounds lethal by the side effects list I have found. I may not give it a go. Why can specialists not treat you as a whole instead of one disease?
26th …
MiA …
27th …
MiA …
28th …
MiA …
Oh well, we have another week, another Monday … and yes, I am still really bad …
29th …
MiA …
I don’t think I’ve ever struggled this much and for so long too. I am so not recovering.
30th …
MiA …
31st …
MiA …
… today I remember my dad, it would be his birthday today …
fragmented.ME xXx
fragmented_ME
My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰
