catch up june 2022 …
Catch Up June 2022 …
May was another month lost to illness. I do think it’s time for me to accept where I am at and just know that I am living, even if it’s in a small way. To know, and celebrate, that I can still have good moments and experiences and count them as gains rather than looking at the loss.
Hard … but necessary …
There are way too many loses with this illness and not many gains, if any …
* 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 way of doing things, monthly, is much better for me. It’s a keeper.
Yesterday, the last day of May, I started taking a beta blocker. I think it’s already triggering allergies, or mast cell activation issues, and so I need to watch that. It definitely gave me insomnia, which is one of the rarer side effects, but that should settle down with time. The allergy thing, if that’s what I have, will only get worse.
It was mast cell issues, read below for the ongoing update about this …
What’s Important …
This month I really want to sort the PoTS thing out. Hence, the beta blocker trial, which is documented below.
Diary (June 2022) …
1st …
I am very much still MiA … but needed to come on up day you and my journal …
ME awareness month is over, but living with ME and my ME isn’t over … it is now I will relax a bit, be less hyper vigilant about making sure I don’t miss an awareness post day, whilst I pay the ongoing price for everything I did in the name of awareness.
Regarding that, if I go off the engagement statistics on my instagram, I haven’t made an impact worthy or equal to the amount of effort it has taken from me. So next year I need to assess will I recycle this years posts or do another fresh set of awareness posts … I actually have close to 1000 followers and engagement was very low and mainly is was only from other ME sufferers, which is nice, it makes me feel less alone, but is not actually the goal …
… every action = symptoms …
2nd …
MiA …
Second night / day after beta blocker. My HR isn’t any less, in fact my RHR has gone up by 3 beats, and my activity based HR, which is nothing more than, making a drink, going to the bathroom, and other necessary movement, is still way above what it should be. However, latency HR recovery time is much quicker than it used to be. Plus, I spent way more time sat upright yesterday, which is a good sign I felt better. I know because of the awful upper back pain that I have.
These are all good signs. That said, today I need to take care of my upper back and it’s burning pain by laying flat a title more.
3rd …
MiA …
Today, I search out some of the new symptoms I’ve got in relation to the beta blocker. For instance, sore / cut tongue, swollen inside bottom lip, loads more muscle pain, crazy itchy sensitive eyes, facial bruising swelling across my upper cheek (left side only), ever increasing chest pain. There are others I just can’t recall them all as I’m retrospectively completing this. Nevertheless, they are all rare side effects of the beta blocker, some are serious ones; I didn’t get any of the common ones. This is typical of my ME! So, I’ve decided to ditch it. I’ll try and get mestinon, as an alternative, if I can. I will make another telephone appointment once the doctors reopen following the jubilee celebrations.
…
4th …
MiA …
5th …
MiA …
My chest pain is finally subsiding … but I’ve noticed random bruises all over my body … not sure if that’s the tablets or not but I am glad I’ve stopped taking them … my tongue and sore mouth / lips has eased to be negligible now …
…
6th …
MiA …
Annual bloods appointment … ✔️
7th …
MiA …
GP appointment (bowel & digestive issues) … bowel part quite straight forward … pulse (iffy and too high) BP (just seriously wrong to the point he though the machine was broken and so after tapping it several times, unplugging and starting again, he finally got another and accepting my BP is weird) … ✔️
We also had a discussion about a beta blocker alternative. He said I wasn’t to take any of the standard beta blockers again. I mentioned mestinon, which I’ve read work good for people with ME/CFS. The plain answer NO and I know why too, cost. Am I not worth it … absolutely not according to my surgery. However, he did say if my ME specialist recommended it they would consider it. So it’s over to YFC_J.
🤦🏻♀️
8th …
MiA …
9th …
MiA …
10th …
MiA …
11th …
MiA …
12th …
MiA …
This has been a bad week …
13th …
MiA …
14th …
MiA …
So, I did some things that I viewed as necessary. I will explain later, on another day. I knew I would get PEM, but this is on another level. Even though I’ve stopped ‘doing’ four days ago, I feel as though my illness is still in free fall and I have no idea when it will hit the bottom or how I will get up again when I do hit the bottom.
ME seems to be: do something = PEM + inertia = illness progression, which is often permanent …
…
15th …
MiA …
… fuck fuck fuck …
… fuck migraine …
… and fuck shitty medications that don’t fuckin work …
16th …
MiA …
17th …
MiA …
18th …
MiA …
Bad reaction to naproxen, of awful confusion as though my mind had split into two. One side, the normal me. The other side, unfocused, trippy, and very confused. It was awful.
DO NOT TAKE NAPROXEN AGAIN …
19th …
MiA …
Today, I asked the question …
what do I need to let go of …
The answer that came …
Surrender to Your Soul’s Path …
Your life’s journey has been perfectly designed for your soul’s growth. Embrace every lesson and every moment …
20th …
MiA …
21st …
MiA …
22nd …
MiA …
23rd …
MiA …
My boy_2 is 25 today …
24th …
MiA …
25th …
MiA …
26th …
MiA …
Over the last week I have had several GP telephone calls. It’s taken me until today to actually be able to document and process what I think happened.
Firstly, I was put on a new medication of a very low dose beta blocker, which didn’t seem to suit me.
I went to the GP, well actually I called the GP and the GP rang me back and then called me into the surgery. He looked at my photographs and he actually agreed that they didn’t suit me. I personally think it was triggering a flare, specifically it looked like a lupus flare even though I don’t have a diagnosis of lupus.
I then contacted YFC_J who said that he would write to the surgery and ask them to try a child’s dose of antihistamine daily and then slowly try a beta blocker medication again.
I had another GP telephone call regarding my bloods. I have an ever-increasing and worrisome cholesterol level and my liver is out of whack. It has been for over five years and so I have annual checkups. However, some of my liver bloods were missed off so I have to go and have another blood test. We also discussed me being referred to the local lipids clinic as I cannot take a statin due to the myalgia element of ME.
And finally, I spoke to my usual GP regarding the episode I had last week, I don’t feel able to document it fully yet, it was scary (see above for mini explanation). But, in a nutshell I had a really awful experience in my brain. After research, it seems like it might have been a confusion episode or a psychotic episode. I have absolutely no idea which, but needless to say it has worried me no end. With my propensity and sensitivity to over react to new medications, I did seriously wonder if it was the tablets; I thought maybe it was the mixture of the naproxen and the lansoprazole on top of my daily CoCodamol pain medication and when I explained this thought to the doctor he actually laughed at me. Not a kind laugh. More a sarcastic snigger laugh. Whatever it was, it made me feel incredibly uncomfortable. This completely devastated me.
As well, he doesn’t want to give me the antihistamine that YFC_J suggested. He wants to half the naproxen to a 250 mg dose and double the lansoprazole to 15 mg twice a day.
I really did not feel good after the phone call. I actually cried later on when I was in bed and I couldn’t sleep for keep going over it and trying to work out if I had misunderstood or what it might mean.
For now, I think that I can safely say, the episode has ruined my relationship with a doctor that I actually used to trust.
27th …
MiA …
28th …
MiA …
Deborah James aka BowelBabe died today … so very sad …
29th …
MiA …
30th …
MiA …
It has been a very hard month health wise … read July for updates …
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. 🥰
