and breathe …

FYI, this post was started, and written in response to how I was feeling, on Saturday, 3^rd April, 2021.

On the same day this is what I wrote on my Instagram account.

 today 

 I’m so fucking mad 

 my attitude is bad and I’m pissed that I’m so poorly 

 and that people wish they got 

 to stay home and do nothing 

 

 fuck fuck fuck YOU 

 and fuck this illness too 

 

 I’ve so had enough … 

 

 HR 111 

 why because I sat up 

 WTAF 

 

 I’ve well and truly had more than I can take 

 

 a n d   b r e a t h e   . . .

b r e a t h e   . . .

The above, today, well this is basically the biggest rant about having this shitty awful disease that I’ve had in ages. It’s been brewing for days now. I know, because I responded to someone’s Instagram post about ME fatigue, three days ago with this:

Yesterday I had a much needed and overdue bath. Today I woke with the worse migraine ever. Four medications on and I’m still in bed, with the blinds shut, feeling so poorly it’s not true. And people who are simply tired want to claim this. My answer to them is, here fucking have it, but you have to take the lot, or shut up.
Sorry … my ME friends I’m having a bad bad [ health & attitude] day and today I really wish I wasn’t here. I don’t know how much longer I can do this. Sending everyone who has ME fatigue so much love and kindness. xXx (typos fixed)

Understandably, I am just so fed up of being so ill all the time. I feel like I’m dying, but I just don’t die.

I can’t do anything I want.

My life is spent either lay in bed or lay on the settee and even doing this gives me PEM.

For those who are reading and don’t know what PEM is:

CDC : post exertional malaise (PEM):
Post exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing).

ME Association : post exertional malaise (PEM):
Post-exertional malaise (PEM) is a delayed worsening of symptoms that occurs after minimal physical or mental activity.
It has also been called ‘Post-exertional neuroimmune exhaustion’ (PENE).
The key feature of PEM is that the malaise (extreme fatigue and flu-like symptoms) and other symptoms experienced are not in proportion to the amount of activity that has been done.
PEM is often delayed and may be experienced hours or days after the activity took place but is most likely to occur 1-2 days after the exertion event (Hotlzman et al., 2019).
This delay can lead clinicians and patients to believe that symptom exacerbations are random and unrelated to a trigger as they do not attribute their worsened condition to something that may have happened days earlier.
The effects of PEM can last for hours, days, weeks or even months. Prolonged periods of PEM are often referred to as ‘crashes’ by patients and PEM can even trigger relapse.
The exact cause and mechanisms of PEM are not yet fully understood, though a simple explanation might be that it occurs when a person with ME/CFS has gone outside of their ‘energy envelope’.
This energy envelope is described as the amount a person can safely do without triggering an increase in symptoms and/or symptom severity. PEM is triggered when available energy has been expended and they have gone into ‘energy debt’.
PEM is one of the main features that sets ME/CFS apart from other diseases and explains why exercise can be very damaging in ME/CFS, setting patients back for days, weeks or months.

can I find grateful … 

When I get like this, which is not often by comparison to, and considering, the fact that I feel so sick every single day …

That said, when I do get this way, I really do need to dig very deep in order to change my attitude.

y e s

Yes, I know, and I wholly agree, that I am entitled to get pissed off. Very entitled to feel this way. This illness is such a mindf**k. But, the chemicals that ‘pissed off’ releases into my blood stream won’t do me any good at all and will probably make me feel sicker tomorrow; more PEM.

So, to combat this, and to be kind to myself, I have to find ways I can change my inner attitude. I do have plenty in ‘my ME toolkit …’ to draw upon, but on days like today it feels like I have to dig very deeply.

my inner views …

One way I can do this is to simply look the other way.

Instead of looking inward, I can choose to look outward, in an actual physical way, and towards my windows. I really only need to glance out of anyone one of my windows and I can allow nature to lift me. I can allow it to bring to the forefront of my mind the utter gratefulness I have. Although, it may be buried deep and underneath the pain, it really doesn’t take more than my surroundings to make me grateful, to be alive, again.

This can be one of my favourite ways, especially when my light sensitivity is not too bad. I do love all seasons and I love rain too, but light sensitivity spoils them for me.

Today though I can enjoy the day, blinds and windows open, because my light sensitivity is manageable. And, I can breathe into this.

my outer views …

These are just some of the beautiful views I get from my bedroom and lounge windows. The two places I have to be most of the time.

When I see, and I mean really see, these views it reminds me of just how fortunate I am to have this.

It also reminds me of how much I can still enjoy by comparison to the very very severe ME sufferers, which sadly is myself some days. But I do get days when I can open my blinds and cope with the brightness. I even get days when I can come downstairs and look out of my windows.

A beautiful thing indeed. One to be so very grateful for.

And so today, I will continue to look outwards, not inwards. I will enjoy the beautiful fresh air wafting in through my open patio doors. I will feast my eyes on that what is shown to me.

Nature, can bring you back home, it really can. And I get to enjoy this …

Hopefully, very soon there won’t be any room for ‘pissed off’ …

the real me …

The real me is never pissed off. The real me has a zest for life that is hard to imagine in someone so sick. The real me has hope and will carry on smiling through as much of it as she can.

the real me is so beautiful inside (she’s just getting a bit frayed on the outside) …

on a side note …

As I’m crafting this post and working on my paragraph above, it dawns on me that deep inside ‘the real me …’ still exists. And so of course, in typical me style, I start another post at the same time as I am writing this one. LoL All starting on the 03.04.2021. Neither will be available till the end of April and the beginning of May, respectively. But this, my website, is what is keeping me sane, and safe, right now.

oh FFS … 

I’m sat here peacefully enjoying writing and glancing up and out of my patio doors, when I’m suddenly hit with a tornado of energy, possibly resentment too. No definitely resentment too. Loads of it.

It feels like I’m being told I’m not allowed to enjoy life as a sick person. As if this enjoyment might mean I’m no longer sick. FFS, I’ve struggled so hard to get to this point of

p e a c e

today, and you want to punish me. I’m trying so hard not to respond. But, the harder I try the louder you bang and draw my attention back to you. Walking harder than you normally do. Huffing and puffing louder too. Rushing around as though there’s an emergency.

f u c k   o f f

There it goes again. I’ve lost my peace amid the judgements of those who think I’m lucky to be in this position.

why …

Why do some people just try so hard to spoil your peace? Or maybe a better question for me to ask is,

why am I so affected by the shit energy people spew out …

When people say ‘the silence was deafening’. It’s what I have happen all the time. I hear no actual words in my ears or my head. But I actually feel them, very loud and very clear along with the not so subtle and manipulative ways.

what am I hearing or feeling … 

I’m going to ask a question here and your thoughts and ideas are very welcome. Submit them below.

Am I so in tune that I can feel what is wanting to be said to me?

O R  …

Am I feeling and hearing my own inner judgement?

which is it …

Is this in my head? Pure and simple guilt! Or is it being spoken inwardly and the pushed toward me? It feels like pure and simple nastiness!

no more … 

Well, whichever it is.

n o   f u c k i n g   m o r e

I’ve had enough. I’ve well and truly had enough!

an apology …

Please forgive my language in this blog post. I mulled over whether I should post it. And maybe I’ll add a warning at the top [added later: I found a plugin which allows me to add a notification to specific posts, you will see this notification anytime there is a warning and you will have to close it each time you want read the post). But no matter how hard I tried I just couldn’t find any better words to express what was going on and what I was feeling.

 fragmented.ME xXx