fragmented.ME …
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catch up may 2022 …

Catch Up May 2022 …

May is my birthday month. This year I’ll be 60. I’ve been sick since I was 22. Mild > Moderate > Severe > moving ever closer to Very Severe …

In May, the day after my birthday, my boy_1 is going to be 37, and just over two weeks later my husband is 60 also. Where does time go …

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 feel as though I am entering a much more severe stage of this illness. Who knows where it will take me.

What’s Important …

It is really important for me to value my life … that which has gone, that which is now, and that which is to come …

May is ME Awareness Month. I don’t feel well enough to do anything special so I will post a ‘one liner’, every single day, about what ME is to me …

Diary (May 2022)

1st

MiA

The beginning of ME Awareness Month … see my ‘what ME is today …’ blog page of Instagram posts …

Today has been a really bad day at black rock … health = deathly …

I also dropped my brand new pink iPhone, first real pink phone I’ve ever had and loved. It smashed the back of the camera and I was devastated. I’ve not paid a penny off it yet, not even paid the postage. I also cracked the full screen and smashed the corner edge of my FitBit (no idea how this happened as I didn’t drop it … all I can imagine is when I unplugged it from the charger the plug caught it in a vulnerable spot and caused more damage than it should have).

Good News … the iPhone had a screen protector front and camera and it seems like the screen protector did a great job of protecting the camera … phew … very well worth its cost.

2nd

MiA

… M I G R A I N E …

3rd

I had a bad day yesterday and a even worse night last night. This illness is relentless in the effect it has on you, the whole you, through its symptoms and their effect …

4th

Woke up very early today and afraid to go back to sleep because I am certain to wake up much worse than I am now. So, I am working on something, a list of people with ME … might be a good idea, might not be … we will see …

5th

MiA

Today I am 60 years of age … I have been alive 6 years longer than my dad got to be alive and 14 years to go to my mum’s lifespan …

6th

MiA

Today is my boy_1 birthday (37 years of age) …

7th

MiA

8th

MiA

9th

Today I have made some very big changes. I am helping my body by not over over eating because I recognise how much extra pressure this is placing on my heart and energy systems. I have always used more energy than I have and it is now coming down to not spending energy that I don’t have for digesting more food than I need. I feel it’s too little too late but I have to do what I can to halt this decline.

In other very sad news. Today it was announced that BowelBabe from ‘You, Me and the Bic C’ podcast has been sent home with hospice at home care, to basically die. What a tenacious woman she is and has been. I have to say I will miss her and feel as though I had gotten to know her during the time since Rachael Bland set up the podcast. There really are no words to express what I feel about this … I will close by sending her and her family much love and peace in her final days.

10th

After a very fitful night, I woke up so early today. Pain all over my body and bad enough headache.

I dreamt about BB all night. Cancer is such mindf**k. More and more young people are getting it and dying way too early from it.

11th

This @bowelbabe thing has truly affected me. If you can donate to her @bowelbabefund please do so and send her off with a drink.

12th

MiA

13th

I am still feeling super poorly …

14th

I have been extra poorly this week but have put it down to feel so sad about Deborah James (@bowelbabe).

That said, again, I couldn’t sleep last night because of pain in my lower left abdomen. It got so bad at some point I knew it was time to ring 111 (our out of hours emergency services).

So, at dawn, well around 06:15, LoL it just felt like dawn, I rang 111 who basically said that I shouldn’t wait till Monday and that I should come to see them today if I could manage it. It was hard but I went. My health, for want of a better word, or it’s probably better for me to say, looking after what I have ‘kind of working’ is important to me.

No wonder I feel so unwell. I have diverticulitis and I realise I’ve had it before too but it was misdiagnosed as appendicitis because of its position in my body.

I am on a very strong broad spectrum antibiotic and should hopefully pick up soon. Not that I will notice because I really didn’t notice how sick I was until the pain became unbearable.

15th

MiA

WoW I actually don’t think I could feel any sicker and still be alive …

Today is ME Blue Sunday. No, I don’t have anyone to share a cup French earl grey tea and a slice of carrot cake with, which is extremely sad. No friends, no family close by, and my husband is in the garden, again. Having ME is extremely lonely.

I think next year I will plan to join one of the online Blue Sunday tea parties …

16th

MiA

Had another awful night with searing bowel pain and woke with a nasty headache … another very easy day …

HA! all my days are easy but on days like this I try to be even easier on myself …

17th

FML … it seems like the antibiotics, for the diverticulitis, aren’t working. One day I feel a bit better only to get really sick the next day … WTAF … this illness takes the biscuit …

And I’ve lost another piece of another tooth … 😳 …

18th

Today my husband is 60 years of age …

I also lost another filling. Bummer. So had to go to the dentist.

The thing is, and my husband has noticed this too, I often feel a tad better, or a bit more able to do things, while taking antibiotics. I don’t take them often, sometimes even when I am given them I try to function without them as I get quite a few ear infections and would be on antibiotics biannually if I took them each time they were prescribed.

They’re not miraculous but to put things in perspective … generally I can’t do much; really I can’t do anything. So far this year, I haven’t had much personal self care. Yet, while taking these antibiotics, I’ve had a bath, washed my hair, and the following day, which was today, I have also been to the dentist and had a filling. Bizarre as this sounds it has been such a long time since I have been able to do ‘a thing’ two days in a row.

19th

Today, at 08:00, I take my final antibiotic of the course. I’m not sure if the diverticulitis is better yet, but it’s definitely not as bad as it was and overall I feel better than I have in years.

It won’t last though because it never does. That said, it’s definitely something to discuss with YFC_J next week in our appointment.

… 💭 …

20th

WTF is wrong with me … and I don’t mean health wise, that’s just another story all together.

But, again, I have been on a silly shopping spree.

I bought some new PJs. Well that’s really ok because that is all I wear. It’s the new bags, 6 in total, that I have bought. I don’t even leave the house.

Should I return some?

Maybe returning all of them would be a better idea!

Probably!

Will I?

It’s highly unlikely!

What did I buy? I bought them all from Fablou. First, I got the ‘City’ in the new lilac colour, followed by the ‘Chelsea’ also in the new lilac, as well as in black and cranberry, plus I got the ‘LL Chelsea’ in fiji and cranberry. To go with these new ‘Chelsea’ bags I also got six long interchangeable straps in red, yellow, green, orange (this was sadly out of stock), blue, black. I am going to have some fun with these colours and trying new combinations.

Shocking … I know … it is definitely a problem … considering I have no income and do not ever go anywhere …

In my defence, the PJs were very discounted and everything from Fablou was either discounted by 30% or from the outlet. Still, it’s a lot of money to spend on bags when I don’t go out and I have a ton of bags from when I worked and when I did leave the house daily.

But, anyone with any level of insight would realise it’s just comfort … that’s all!

 

Fablou bags …

Fablou straps …

 

21st …

WoW some people do swing hot and cold. Surely, I deserve better than this.

I feel as though I am a burden and that my needs are not as important as others, especially someone’s very close to me.

My needs come last. My health comes last. My symptoms come last. My pain comes last. 🤦🏻‍♀️

My desires and wants are ridiculed and poo pooed as if I am not intelligent enough to know what is good for me. I am viewed as being so strange, or alien to the other person, that I am unable to prioritise my own needs or wants as if they aren’t important. When I think in reality it is the other person who is strange …

22nd …

Yesterday was a bit of a bitchy day. However, on reflection I still believe everything I said was valid and also an excellent interpretation on how things really are for me.

In reality, I am extremely unwell and everything that I manage to do is monumental. Yet, somehow it’s poo pooed. And ‘things’ I feel I need in order to make my life easier are likewise poo pooed and minimised as wasteful or extravagant.

At teatime, whilst we were eating our ready meal, made up of ‘pop it in the oven southern fried chicken’ and ‘oven chips’ with a dollop of ‘tubbed coleslaw’, I recalled the times I used to daily prepare wonderful meals and tidy up after them too without a dishwasher to help. For instance, I would always make fresh coleslaw, fresh potato salad, you name it. I would make everything that you needed to have a really nice meal, all from fresh ingredients, and all whilst I was still poorly with ‘mild ME’ and sometimes ‘moderate ME’, even after having been sick all day with a severe migraine, and not once has anything of the sort of been presented to me in the name of love and care. In actual fact I’m pretty much a nuisance to be taken care of with the easiest line available … ‘oven ready meals or what I’m having even if you don’t like it’ is the ethos … and un-ironed clothes too! WTAF …

THIS is pretty much why I feel as I do …

Today, I feel seriously unwell and extremely sad …

23rd …

MiA

24th

MiA

I have an appointment with YFC_J today. But, I am super super poorly. It’s via telephone and is at 14:45 but I may still need to cancel.

25th

MiA

26th

MiA

Yesterday, was the first day in a long time that I got to spend most of it on my own. And I moved at my own pace too. 

I got up, made the bed, had a mini rest and then got myself my lovely latte. Once I recovered enough I stocked up the water in the kitchen cupboard, then went over to the garage and got more water for the ‘holding cupboard’ in the porch. I also took the recycling across to the garage as it was spilling out everywhere, as usual. Then, the Milk Man dropped a bottle of milk on the step so I cleaned all that up and clean the milk box as well because it had splattered and splashed all over it.

Had a rough day but enjoyed not feeling pressured to move at someone else’s pace or being judged for resting up after I’ve done something.

Roll on more ‘alone’ days.

27th

MiA

28th

MiA

29th

MiA

I have been so poorly these last few days. All because I made the bed, stocked our water and took the recycling to the garage, which isn’t very far, oh and I went up and down the stairs twice. WTAF is this awful illness? What has is done to my body? What is going on inside my body?

I am seriously struggling to stay alive right now!

30th

MiA

GP appointment to discuss low dose propranolol for ME and POTS symptoms …

how did it go …

Firstly, I must admit to being exceptionally nervous. I used to work at the surgery and my appointment was with a GP who on a personal level was lovely but not so on a professional level.

So I planned the appointment and what I wanted to say quite carefully.

it went wrong …

So, in typical ‘me & ME’ style I planned it to the letter and then just the moment she rang I had started a ‘sample’ book reading in audible (I can’t listen to certain voices, they make me ill, but that’s another story), and somehow I couldn’t stop it and my notes were on the iPad. LoL

So, I fluffed it. I felt so nervous as I haven’t ever spoken to her as a patient, but she felt kind and gentle and very willing to listen to me.

overall outcome …

In a nutshell, she gave me propranolol at 10mg to take half at night and build up to one a day and if that doesn’t offer any relief add another 5mg at a time going up to 20mg.

31st

MiA

I didn’t take my beta blocker last night and I feel so very disappointed in myself … I hate new tablets regimes and I have incredible anxiety until I am sure about how my body is going to react to them … I will try again tonight …

Having a bad day, but better than Thursday / Friday / Saturday / Sunday, which I realise must have been another four day migraine … probably because of the extra stuff I did on Wednesday… FFS 🤦🏻‍♀️ …

 fragmented.ME xXx

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. 🥰