catch up : 15.11.2021 …

Fortnightly Catch Up 15.11.2021 …

I am still here trying to keep on top of things. I really want to be able to add, at the very least, a little daily few words of update for you.

I am struggling so much with how poorly I am and accepting how I am not improving in any way, in fact I am definitely getting worse by the day.

I really truly do not want to be this unwell …

Please, please, if you do not know about ME, as an illness, educate yourself … you will need to know about it incase you or one of your loved ones get it …

* 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 have weaned down all the things I was planning for my daily updates on this website because I’m so unwell and because I’d rather concentrate on quality posts over quantity posts …

My advocacy and fund raising for the ME Trust is complete. However, you can still donate but from the end of November the virgin group, who are used to process the donations, is closing for this type of activity. So, November is your last month to donate. I have decided not to update all my links to their new method, due to ill health and lack of mental processing powers, and just accept what I managed to raise up to this point as the final sum. I have read, or more precisely listened to, all the planned ten books and have either already completed my reviews or made a very good start on them. This means, I fulfilled my promise as regards what I would attempt to do to raise money for ME. If you want to, you can still ‘sponsor me …’ to the end of November 2021, and once the ‘donate’ link expires you can go direct to the ‘ME Trust UK …’ and donate directly to them, mentioning my website fragmented.ME if you would please …

On a further point, I have written to my GP asking for another referral, or an appeal, for me to be seen by the Yorkshire Fatigue Clinic as an NHS patient rather than paying privately. I have no income and according to the NICE guidelines I am entitled to be seen by an ME specialist. I will keep you informed.

I have also done a series of updates from the decodeME study. They’re just copy & pastes but worth a read.

What’s Important …

I am very very scared and getting sicker and so encouragement and support is paramount …

…

Diary (01.11.2021-14.11.2021) …

Monday …

The first day of the new fortnight, it helps me feel motivated when I think in those terms … first day … and so today is another new start for me!

Today, I hope to spend some time on my website, planning my next, hopefully very educational, blog …

Tuesday …

Yesterday I managed to update the new ‘NICE guidelines’ page … to reflect the updated version. I will now go through them on my remarkable device and make notes etc, which I will also share once’s it’s completed.

Today I pay the price for the work I did yesterday, which was mainly copy and paste but obviously was too much for me.

so it’s another day doing nothing … this is so so hard because I don’t really feel like I did that much but my body obviously feels differently …

Wednesday …

MiA …

Yesterday morning we went for a McDonald’s breakfast. Since they began running breakfast until 11 o’clock I can make it every now and then. And I’d been fancying it for months. Today, I pay the price with a migraine. I didn’t even get dressed. I didn’t drive. I just sat upright for too long.

Im telling you all this because you need to know just how poorly people with severe ME are. They cannot do a single thing without PEM.

But, and this is a wonderful but … I woke to a beautiful gift from ‘Smile for ME … ’, it definitely made me smile as well as cry too. It was such a thoughtful gift too. Things that I would actually use. Please go and look around their website. If you know someone with ME nominate them for a smile gift, they’ll love it, and if you can donate to help them fund this lovely gifting please do so.

Thursday …

MiA …

Today has to be a complete rest day … too poorly for anything else …

Friday …

WoW this has to be the first time in bloody months that I haven’t woke up with a severe severe headache. I know it doesn’t mean much because I still feel very poorly but it feels so good to not have a massive headache.

Saturday …

Pushed myself to have a bath and wash my hair. I really did need it but it really took it out of me and I went and fell too …

I became so unwell I just had to go to bed at 19:30 …

Sunday …

MiA …

I woke up with a migraine but for some reason I decided that I needed to sort my eBay sales out. I sell items / things that I will no longer use. Some of my items are brand new and some are used. All are in excellent condition. But the room I store them in and package them in, our guest room, looks untidy to me because of all the packaging that I have kept, just in case. So I decided to sort it out. Yes, while I had a migraine. Why oh Why!

But, of course, I couldn’t finish it … and I cried and cried and cried …

I cannot tell you how fed up I am of being so sick …

I don’t know how to carry on without being able to do a single thing …

Monday …

MiA …

Monday, the first day of the week … the day I often start over …

Nothing is starting over today … same old same old …

Tuesday …

MiA …

A N O T H E R   F * * K I N G   M I G R A I N E  . . .

W T A   . . .

Wednesday …

MiA …

This morning I was reading an online article about what long covid can teach us about ME … and I am incensed … it’s disgusting that what we know about ME isn’t teaching us about how to help those with long covid …

FML day #2 of M I G R A I N E …

Thursday …

MiA …

… 😪 …

Friday …

MiA …

FFF … FML day #4 of M I G R A I N E …

Saturday …

MiA …

OH WoW … I have to share …

Although I still feel extremely unwell, please don’t misinterpret this, I just have a spark of hope. I have met a new friend, with ME, who lives so close it’s not true. This feels really helpful (I meant to say hopeful here but it feels helpful too so I left the error in for posterity). I don’t know why because it’s highly unlikely that we will ever meet in person, it just feels so nice to actually have a friend who has the same illness and who is in close proximity.

This makes me realise just how lonely I am.

I hate this illness. Today, I am physically alone all day. Not that I don’t spend hours and hours on my own, lay on the settee with no one to talk to. My husband works in the dining room and we barely share more than a few words throughout the day, nor even after work is over. But today he is out of the house all day.

I am alone but the loneliness feels little bit lighter now …

Sunday …

MiA …

oh well …

 fragmented.ME xXx