catch up : 31.12.2021 …

Final Catch Up 12.2021 …

Yes, this is the final catch up of 2021 and for me it has been an exceptionally difficult year …

It is also going to be my last fortnightly catch up because I am moving over to a monthly edition. I have really struggled this year to keep up and do 24 p+ posts and so I am hoping that maybe 12 will make a difference but also allow me to still document this terrible illness and how it impacts my life on a regular basis. I do realise that the total days will not change however the admin involved in the blog posts will be halved.

…

* 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 …

From now on I will do a monthly catch up journal post instead of fortnightly.

What’s Important …

If you could donate donate donate to help research ME and get us a test and treatment and maybe even a cure …

Diary (13.12.2021-31.12.2021) …

Monday …

MiA …

Tuesday …

MiA …

S O U L   D E S T R O Y I N G   . . .

I am on my knees and feel so alone …

Wednesday …

MiA …

I had a bath and washed my hair because I deserve to … and now I am severely poorly again …

… 😰 …

Thursday …

I didn’t sleep very well last night and so today I’m even sicker …

… 🙄 …

Friday …

MiA …

f**k … f**k … f**k … it’s Friday … and I’m not ‘f**king’ because of it being Friday, even though I have every right too because it means that I’ve lost another week to this awful illness … but Friday is cleaning day in this house and it’s always very stressful, as if I am expected to, and have to, pay the price for you doing it … and not even as good as I did, for 23+ years too, I might add …

all the banging and under the breath mumbling really makes me uncomfortable and sad … it is extremely triggering and stress inducing … it feels abusive and as if it could be enough for me to make very drastic decisions because no one should ever have to feel this bad when they feel this poorly …

… f**k you …

Saturday …

MiA …

I do not know how much longer I can carry on without breaking …

… 😕 …

Sunday …

MiA …

I have had to come off social media for a while. Instagram is my social playground and where I make new friends, mingle, and also do most of my advocacy work. But yesterday, early in the morning when I couldn’t sleep and, as you do, I went down the rabbit hole and on some reactive adrenaline spin I decided to share what I’d found with my fellow ME sufferers.

The response of some of my followers was really shocking. In most cases they took it in their stride. However, for well over 30 of my followers the response was very acrimonious with many of them deciding to unfollow me and with plenty others making nasty comments and sending argumentative messages to me privately.

At the time I dealt with it, or so I thought, but this morning I am the sickest I have ever been. During most of the morning I actually felt as though I might die. And so, I have decided it is time to take a break from social media and I deleted my Instagram app. I will be back, but not until the new year. I will make a daily check on follower numbers using my ‘followers’ app and I will block all the followers who leave, which will mean, when I do return, if any of them have private messaged me or made nasty comments I won’t see them and I won’t be triggered again.

In response to the above, I also knew I needed something to occupy my mind and so I have bought myself some haikubes and I will spend some time making haiku poems, which I will share here. But, I am thinking that I may also save some of the best ones for a small kindle book as a kind of documentation of my journey through ME. It would be nice if I can make back the cost of the haikubes (only £32 in total) and it would be even nicer if I could support the website and cover some of my care costs with the proceeds. One can hope …

Monday …

MiA …

M I G R A I N E  think I’m coming down with something as I have awful sinus pain as well, which is something I don’t usually get …

Tuesday …

MiA …

I was extremely unwell yesterday. Today is not much better. I’ve got a small cold and a nasty cough with sneezes and I feel quite poorly.

Wednesday …

MiA …

For the last few days I’ve felt like I’ve been coming down with some heavy regular illness. Bizarre considering I don’t leave the house, like ever … but my husband collected his aged aunt from hospital and then spent the day with her and a houseful of her medical and social care people and he has obviously brought me home a ‘sickness’ ‘present’ because today I have a full on cough, sort throat, and cold. I’ve tested for covid, which was negative. Needless to say, on top of ME I now feel super …

… 💩 …

Thursday …

MiA …

I am still feeling extremely unwell …

Friday …

MiA …

Saturday …

MiA …

Christmas Day and I am so lonely. The last time I can remember feeling this lonely was when I was a single parent, hanging on for the love of my life to change or make his mind up and I yearned to share my life with him, or at the very least with someone. Sadly it took another 8 or 9 years for me to accept and move on. I don’t feel as though I have 8 or 9 years left to wait for people to change and I also don’t think after this long that things will change. I am always going to be at the bottom of the ‘needs’ chain.

Actually, this has been the story of my life. Every single person who has ever been in my life, and claimed to care, has always put me last. Last in care, concerns, needs, support, help, … in everything actually except when they need me then I am top priority.

… wake up and smell the coffee girl …

Sunday …

MiA …

woke with a massive headache … I really do not know how long my body can go on like this … 09:55 and 7 tablets later and I still feel rough like I’ve been drinking … and so another day in pain I’m guessing … happy Boxing Day …

… 9 years today since my mum died …

Monday …

This morning, for the first time in like forever, I woke with a normal headache, not a migraine type, and my tablets also actually worked.

So, as I sat chatting, having a pretty much general conversation, with my husband. Before I could stop myself, out of my mouth tumbled the words, ‘I’m feeling so poorly, day after day, right now that I’m not sure when I will next get a bath and a hair wash’ and the tears came, they started to flow and didn’t stop for ages.

I am so sad about feeling so poorly all the time and about the ‘no guarantees’ of change in my health, especially for the better.

It feels like I am in no man’s land. Too sick to do anything, and I mean anything, and deemed too well to have 100% care, not that I want it.

But it just leaves me nowhere …

I think I might be getting depressed. Right now, I’m just seriously low and I do hope I come out of it, but, I feel like I’m falling …

… 😔 …

Tuesday …

MiA …

I think I’m getting depressed … I am not even interested in my morning coffee anymore … I’m not sure if this is due to lack of desire or because of lack of health and energy to make it … nobody makes me a morning drink … never … this too makes me feel incredibly alone and sad …

Wednesday …

Today has been very difficult.

I feel pretty much invisible, I always have, with you and some others too, but mainly with you because ‘with you’ counts for so much.

Before, as in earlier on today, I literally stood right next to you, directly looking at each other, speaking about something I was going to do and you nodded, like a f**king nodding dog, as though you were listening to me and as if you had heard me.

Then, not five minutes later, you picked the item up and ask me ‘why have you left this here’?

🤦🏻‍♀️

I literally just told you … and then all you can do is berate me …

This, I am afraid, is a lifelong issue. I am so sad that you don’t ‘listen’ and actually ‘hear’ me … so much so, that the whole thing has plummeted me and my spirit and I am now, seriously, wondering why I am still here … yes really … I am …

OH and another thing … if, as you have also just said, that I am sicker than xxxxx, then why is it you left me alone on Xmas day to visit xxxxx … really why … what does that say about me and where I stand in the scheme of ‘us’ … if there is actually an ‘us’ anymore …

Thursday …

MiA …

. . .   F M L   . . .

Friday …

I spent a lot of today going over and re-reading my previous ‘catch up’ blogs, or maybe they should be more appropriately termed ‘journal’ entries.

I feel pretty sad reading them and actually realising this is my life also makes me realise how cut off, emotionally, from it all I have become. It’s so hard to ‘feel’ because to feel is not much different to ‘do’ when it comes to the energy systems and being able to process the feeling. And so, as a result, my journal entries are very much statements and sometimes, in reading them, they feel itemised.

ANOTHER YEAR
oh WoW we survived
another year we’re alive
yet not true living

My latest haiku to see the year out … dedicated to all my fellow ME sufferers …

 fragmented.ME xXx