catch up january 2022 …
Catch Up January 2022 …
I’d love to say cheerily, yaaay another new year … BUT, all I can say is FFS, FML, and what kind of f**kery is this … really …
I woke today, the first day of the year, with another blistering nightmare of a migraine. I’ve cried so so much, I really don’t know if I can carry on like this much longer … I really DO NOT want to do this anymore!
I would love to also take the opportunity to wish you a very happy, healthy, and enjoyable year. I sincerely hope we all get what we need this year.
xXx
* 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 …
This is the start of the new monthly method, or way, for my catch up posts as apposed to doing them fortnightly. I hope it works out better for me and for you too.
I am also going to attempt to write at least one quality blog every month and if you have any suggestions about what you’d like to see please ‘contact me …’ with your suggestions.
What’s Important …
I need lots of self love and self compassion right now as I am struggling more than I can even put into words … being so ill every single day is taking its toll on my spirit …
Another very important aspect of this year, especially this new month, is that the decodeME study will begin and we need you to take part, the more the better the results will be.
Diary (January 2022) …
1st …
MiA …
M I G R A I N E …
… 🤯 …
2nd …
I feel so much better today than I did yesterday. That said, I am taking the day to ruminate and try to recover a bit more.
I know I need a visit to the GP because my pain, when I’m getting the migraine, is absolutely out of control and considering I take pain medications daily I really should be on top of it. It might be that I need a step up in terms of pain medication.
… 🤕 …
3rd …
MiA …
…
Another bad headache, but not as bad as the one on the 1st January. However, because if this it seems I am now treated as being better. I absolutely hate how the never endingness of this illness makes people forget what you are dealing with on an ongoing daily basis. It’s exhausting and would destroying.
I am well and truly pissed off and tetchy about it today. Everything feels like a FIGHT …
… 🤺 …
4th …
Today I fell a tad better … yet, in total contrast, both my ōura ring and my fitbit are telling me how appalling my sleep was last night …
… 🤔 …
5th …
MiA …
M I G R A I N E . . .
… 🤯 …
6th …
MiA …
I have been quite poorly these few days gone and I’m trying for this diary to reflect actual reality instead of adding to the days after the day has gone just because it’s digital and I can.
So, on Tuesday, I think it was, well anyway it was about two or three days ago, I can’t recall exactly when, but I received an email from my YFC_J who said my funding had been approved and that we would go ahead with our appointment as planned but there would be no bill to follow. I also had a letter, in the same day, from DWP, which said I’d been put in the support group for ESA. This means I no longer need to give evidence of my sickness, unless something changes, I get £114.10 a week and my NI is protected so I’m on full pension (in 8 years or 7, whenever it is I can retire, you would think I could take early state retirement considering how sick I am, but no I can’t it is not available). These two things are worth shouting about and ought to make me smile but they don’t (see next paragraph as to why).
I’ve been ill since 1984 and I have never had any medical care except the stay in hospital right at the beginning of the illness when my liver was poorly. Also, I have never previously been awarded sickness pay or PiP (DLA as it used to be called). I have always had to struggle on, being in and out of part time work, for part of the years, with some years not being able to work at all. And so in almost 50 years I’ve been without much care or income of my own and never had anything as regular as weekly, except when I was a lunchtime supervisor, which is only 1 1/2 hrs every term day, and wasn’t much money at all. That is the only job I have managed, without leaving, for longer than 12 months.
Going over these things really does make me acknowledge what a shit life I’ve had, in a health and in a financial sense, because of being poorly and because of not being told how very serious this illness was. So, I wasn’t told to care for myself I was told to try harder, and I did, … and I made myself sicker for not even enough money to keep myself.
… 😲 …
7th …
MiA …
… 😔 …
8th …
Today my husband very kindly offered to wash me, and my hair. I’m guessing I smell because he’s never offered before.
… I am devastated by this …
It means I smell. It means I’m clearly getting sicker even if I think I’m hiding it. It’s where I’m going to end up even if I say no now, which, by the way, I did. It means I could die. Yep … I have this fancy idea that I won’t die young … but I might and probably will. It means so so much and I’ve not prepared myself for this. It’s not how I envisioned my older age.
… 💔 …
9th …
Today feels a little bit better than yesterday. Not necessarily healthwise or physically but definitely emotionally. I don’t feel as though I am carrying as much emotional baggage and I guess that’s because I have the breakdown of crying yesterday and it’s released a lot of the stress.
However, I am definitely feeling concerned about my future. Whether I will live or if this illness is going to kill me before there is any treatment or cure. I can say for certain that I am living in what is termed rolling PEM and until I find my baseline I am never going to get to the point where my body can start to recover.
I have some little cards (a 52 card deck), which I am going to use to help me investigate my inner world and find ways to give myself self-care. I know previously I have mentioned that I need to have more self compassion and also that I need to do some grief work. However, after much consideration I actually think it is self care that I need and so that is where I will begin.
… 🧘🏻♀️ …
10th …
Another week of nothingness, or maybe much better put would be, another week in too much pain, feeling desperately poorly, and exhausting trying to make a life from all of this …
if your compassion does not include yourself, it is incomplete – – – jack kornfield
… ☺️ …
11th …
MiA …
… oh so very poorly …
12th …
I have an appointment with YFC_J today and I’ve woken mega poorly, again. I am so so fed up of it all.
I am also in the middle, or more realistically the beginning to middle, of a draft post about toxic positivity and time is running away with me. As part of my self care I am going to have to shelve this and compassionately accept what I know about myself, that if I could then I really would. So, my reluctance is a sign of my level of exhaustion and illness.
Yesterday night I barely slept due to awful stomach burning, indigestion, heart burn and severe nausea. I think I’ve now got gastritis on top of everything else.
I will write up my appointment and you can read it on ‘my healing journey : Step 12.01.2022 …’ page.
13th …
MiA …
… 🤍💙🤍 …
14th …
MiA …
… still missing from my usual kind of life …
15th …
Not the worse day I’ve had. I even managed a mini sink wash and a PJ change. But, I can’t help feel niggled that I have to be grateful for such a mere pittance of so called ‘life’.
I would love to be able to have a bath, wash and style my hair, get dressed and go out for the whole day. Walk, shop, eat out, and not even worry about pain or PEM.
I might work on a blog post today, if I still feel ok by the afternoon.
… 🛍 …
16th …
MiA …
… I will be my own best friend. I am not perfect, nor are any of us. I will not beat myself up. I will treat myself with kindness. …
17th …
MiA …
Both my ōura ring and my FitBit claim I slept very well last night. Yet, my body says otherwise. I feel so so poorly, no migraine, just feel so sick and have a poorly sick headache that’s not responding to pain medication, which is bad enough.
… 😷 …
… 🤕 …
18th …
Today, I woke at 05:00, which is unusual in itself, but I woke feeling super hungry. I don’t eat in the morning, or I should more correctly state, I can’t eat in the morning. Whenever I feel unusually hungry, morning day or night, it’s a sign I will have a migraine within 12 hours.
. . .
… 😨 …
19th …
MiA …
… 🤬 …
20th …
MiA …
I went to bed with a migraine and I’ve woken up with one too … this week is not going to plan …
… 🤯 …
21st …
MiA …
… 💔 …
22nd …
MiA …
… 🤕 …
23rd …
MiA …
… 🤯 …
24th …
MiA …
Last night I only managed to sleep 2 hours 5 mins. Today, I’m struggling in the extreme.
… 💤 …
25th …
MiA …
… 🤢🤮🤢 …
26th …
I am not doing very well at all right now. My pain levels are through the rough. I have a constricted windpipe and horrendous painful heartburn, which is causing pain across my stomach and into my chest. I keep choking too. So I did a bit of research and decided to purchase an iQoro device. It wasn’t cheap but I’m hoping my issues are to do with weakened muscles because of the ME. Plus, the device can improve sleep apnoea and snoring, which are both playing up big time these days.
27th …
I had a phone call today with my GP. I really like him. He’s kind. He listens. I think he really cares. I believe he is also doing his best for me.
He has prescribed an additional pain medication to use for my level 3 days. I described to him that I have three levels of pain. Level one, every day I wake in pain, I take my pain medications and they work, yaaay. Level two, I take my pain medications and they take the edge off, they don’t work but I cope. Level three, they don’t work, I throw aspirin in the mix, and I really don’t cope because nothing works, and some days these are lasting four days in a row. And now I can’t take aspiring because I keep getting gastritis flare.
So, he prescribed a gastric protector along with an additional NSAIDs to take in addition on those bad days.
I’m so pleased I have a GP who cares and listens.
28th …
At the dentist today because I lost a filling. I’m so so sick but I really need to go …
I didn’t make it, I ended up to poorly to drive and my husband had gone out for the day to help his aged aunt. So, I had to cancel right at the last minute.
… 🤦🏻♀️ …
29th …
MiA …
… 🥴 …
30th …
MiA …
31st …
MiA …
I am utterly heartbroken. Today I found out that a beautiful lady I met on Instagram died on the 20th January. Her family haven’t posted because it’s still too raw. I messaged her just to say I was missing her and to touch base. I cannot express how I feel. She’s left a huge hole in my life and I know a bigger one in her husband’s and her daughter’s lives.
… RIP my beautiful friend …
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. 🥰
