Thursday 18 May 2023

 




One thing about having Fibromyalgia is getting things done, or not as the case may be.

Things get overlooked or forgotten and then before you know it an age has passed and nothing has progressed.

I along with being bedroom bound have two Autistic children and an Autistic husband.

Back in the days when I was well I did everything and now staying awake is a task.

So today I tried to find some sort of walk in clinic that deals with women's health. I need to get my daughter to see a female as she (and all of us) does not like our GP.

Wow you would think I had asked to join the Masons. I joke when people ask where do you live and say the 1800's!

Today is yet another example of that.

We asked the GP's surgery if they ever have a female Locum....NO.

Is there a walk in women's health clinic....NO.

Could she see the practise nurse instead....NO.

Googled it and a clinic we went to when the children were little to get their Autism diagnosis popped up so I sent an email.

They wrote straight back and asked who was she "under" for her Autism.....ummmm no one.

Like most things in this country you are diagnosed and left to get on with things.

Then they asked for her name, DOB, address etc and I thought Yay they are going to help.....NO.

They said she HAS to see her GP for a referral to the hospital, well that isn't going to happen so now what?

I'm worried if things are left unaddressed further down the road it may be a problem.

Also I am worried I will leave it for a few days and then forget altogether and as my husband relies on me to do all the online organising "stuff" it will never be sorted.

I remember when I lived in London I could just walk into a clinic and be seen, now it is a nightmare even getting a GP who gives a shit about his patients.

Oh how I want to move!


Saturday 15 April 2023


 I follow my name is Fibromyalgia (@fibromyalgiast1) on Twitter and they have just linked the best list of symptoms I have seen.

Obviously over the years I have seen lots of lists but I like how they have set these out in seperate groups.
This way works so much better with my foggy head.
It's not happy reading but when things pop up and you panic at least you can read this and know it is all part of the Fibro.
I hope this helps someome

Friday 14 April 2023

Busy busy busy trying to do lots.
I have 2 YT channels and am thinking of doing a podcast plus I need to audition for books so I feel like I never get time for TV.
But the snooker is on tomorrow so I will be making time for that.
I do all this as talking is the only thing I can do for any length of time.
Today I was asked "wouldn't it help you to do a little walking?"
Don't they realise I would if I could?
It just proves what I keep saying, people think I choose to live like this. 
I don't try to make myself better.
Like I would choose to be stuck in a bedroom 24/7 with the blind down most of the time so I don't even see the outside??
How do you explain to people who only see things from their point of view.
They are healthy and can do what they like and think I am just not trying.
A goof friend of mine once said that she thought people who wore glasses just weren't trying hard enough LOL.
I can laugh but it still hurts to think that most people just think I am not trying!!

Sunday 9 April 2023



 




Feeling really blah today.

Trying to get YouTube stuff done and all the videos I saved to react to will not play.

I put them up on Bitchute for safekeeping and should have just kept them on my laptop but there was no room.

I hate days like today when I am semi normal and capapble of getting stuff done and the computer gods are against me.

Other people would just say sod it and do something else but there isn't anything else I can do.

Plus I wanted to get ahead of myself so I have things in reserve for bad days and when the snooker starts LOL.

What are you doing today?

Thursday 6 April 2023








 Nothing at all to do with Fibromyalgia but feel the need to vent.

I have large Irish hands with sausage fingers.

They get wider the nearer to the bottom you go.

When I married miraculously I got into an R engagement ring.

Now I need at least a V on that finger.

For the last few weeks my hands have been swolen and very sore and I can't wear my rings.

I am now getting lumps on my knuckles as well.

Making a fist hurts and is not always possible.

I still want to be able to wear some jewellery to make me smile but can I?

I am sick to death of looking for large rings and seeing only K-P as an option.

When did the jewellery industry get so damn sizist?

People are so much more body positive these days and still we can only get teeeeeeeeeeny tiiiiiiiiiiiny rings.

I for one am sick of it.

If I had the money I would start a business catering for all needs and sizes.

I am sick of the inference that we should all be stick thin perfect models with piano player fingers.

UGH!

Tuesday 4 April 2023

Tired is an understatement
What did I do?
Changed the bed and had a shower!!
I swear I could sleep for a month
Why does the simplest task make us feel like we've climbed a sodding mountain!
Often I get stupid ideas in my head like oh I could go back to work
Then days like today slap me around the head and say nope you can't
The mind is willing but the body is knackered LOL
I hope you are all having a better day 
xxx
 

Sunday 2 April 2023


 I made a comment the other day on Twitter and someone said it's doesn't work like that.
I asked them what they meant but they never replied!
What I had said was "due to my fibrofog I have to have subtitles on the TV to stay focused"
Whoever had replied to me either doesn't have Fibromyalgia or hasn't reached this stage yet.
(Fibro is progressive don't let them tell you anything else)
Most people that don't have Fibrofog think it is just getting muddled. forgetting words or being a bit confused at times.
It is sooooooooooooo much more and we all have to find out own way of dealing with it.
But the point of this post is never let someone tell you how this affects you. They are not you and have no clue what your life is like.
I may be able to sympathise with you as we are in the same boat but we will be getting off at different stops.
My journey is not your journey and each one is important.
What you feel and how it affects you is exactly that and no one can tell you it's different.
Thankfully I have a husband and kids with the patience of a Saint and will either wait for me to remember things or try and help by playing guess the word LOL.
So perhaps if you find your mind wandering and having to rewind programmes too many times maybe subtitles will help.