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!

 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

Click Here

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!!

 

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?

 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!

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

 

 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. 

 

Wow it is getting so warm in my room and it only seems like 2 minutes ago I closed the window and put the dehumidifier on for the winter.

I also shut the window and close the blinds to block out the noise from the main road when I record.

I watch other narraters talk about their booths and whisper rooms for work and all I have is a laptop on my lap in bed with a mic arm connected to my bedside table lol.

It can't be too bad as I got two books narrated for audible.

I think it is because I have memory foam ontop of my mattress and under the tray my laptop is on and think that must absorb the noise.

I watch a man and he is so pleased he made a recording room in his basement for under $1000 he would freak if he saw what I use LOL.

So is it nearly summer again? I cook in this room in the summer (Overheat not actually cook) so am looking forward to openeing the window but I am supposed to be recording something soon so it's pointless opening it now.

See how boring my day to day is that the big decision is whether or not to open a window LOL.

 Anyone know anymore words for thing?

I've run out.

I spend all my time asking for the thing on the thing or can you fix the thing in the thingamy.

Now I know why my Gran was forever asking me to go fetch her that yoke LOL.

At what point does your body click into old mode and you can't remember anything or get up from kneeling?

Was talking to someone the other week and we have decided whatever we drop from now on the ogre under the bed can keep LOL.

Feeling calm today as the snooker is on and Mark Selby is in fine form and I am happy.

Hope you are ll doing as well as can be out there in Fibroland xxx

 Ah but I don't.

I spend 24/7 365 in bed apart from tootling from it to the bathroom or tootling around the bedroom for things.

My entire life takes place in my bed.

I watch TV.

I use an iPad or a laptop.

I eat.

Sleep.

Wash unless I am up to a shower.

It has been this way for 12 years now.

Funny how people were locked down for a year and lost their shit over it but I tell people I have been cooped up in this room 12 years and no one cares.

I keep repeating it now and then just to see if anyone actually says something but nope.

To add insult to injury PIP assessed me in my bed and basically called me a liar.

THEN I am expected to wish others well when they have a cold FFS.

All I want is a bungalow with an ensuite bathroom (and a litter of kittens and a tea cup yorkie)

Not much to ask is it?

 Today could have been so much better.

How many times have we said that.

I know I could have done with a LOT more spoons.

So I have gathered a few up to share with you.

I's only Monday and I'm done LOL.

Have a great week People.

 

Oh thinking back to the days when I worked!

I was on my feet most of the time when behind the bar in pubs and clubs. When I was a chalet maid and then Fairground Shies and onto GoKart Supervisor.

Now I can barely stand for 3 minutes.

People think the sick and disabled are work shy and that couldn't be further from the truth for most of us.

I try to do stuff like narrating and YouTube  but that is about all I can do now.

But lets pretend we have been at work all week and today it's Saturday and we have a day off LOL

 Thought I would add a bit of humour to this today.

Those of you who don't know my entire family is disabled and though people think it is one long ride on a gravy train it surely is not.

I have just received a PIP review form for my daughter (a I am her appointee) and I have to be ready for a phone call between 9-12.

My hands have decided they don't want to be hands anymore and I have been awake most of the night as it feels like someone is trying to cut my little finger off with a hacksaw.

I have the heat pad on standby as I can feel my guts starting already just thinking about it all.

I have spent the last half an hour looking to see if I can do the form online as I can't hold a pen nevermind write UGH!!

Languishing on benefits the Tories say, if only they knew, but then they couldn't care less.

Oh well it could be worse I suppose.

I put the pic up and then got distracted anyone relate?

I have to make sure I check all the open tabs on my laptop before I shut down at night.

I can be in the middle of a conversation on twitter or whereever get distracted and come back 10 hours later and think oops.

I wonder how many people think rudw moo where did she go?

A lot of spoonies on Twitter and other places understand but I hate to think people think I'm rude or  not interested in what they were saying.

I have to rewind the tv all the time if I haven't got subtitles and am making a point of concentrating.

But there is nothing wrong with me at all is there?

 Anyone else sick of stress related IBS?

I try so hard to not get stressed as I know my guts will tie in a knot and then I will be stuck in the bathroom for hours.

It's so hard when everything these days is stressful.

So people suggest yoga and Pilates etc to chill out and relax.

I can't get up off the floor if I ever get down so they are out of the picture.

Then they say meditate, picture you are on a sandy beach yadda yadda.

Ummm nope can't do that either as I have Aphantasia.

So I rely on my trusty heat pad to catch it before it gets bad and the heat seems to ease my guts and I can carry on.

What do you do?

 

Do you ever feel hard done by?

I hate being the cranky old woman always complaining but somedays I just want to scream.

My twitter feed lately is full of people telling the world how their lives have been ruined by Long Covid.

They used to be so active and now they just feel so fatigued and tired and how difficult it all is.

Then complaining there is no cure, no one is doing enough and trying to get benefits is nigh on impossible.

All I want to do is scream at them

"I have been saying that for Years"

"I have been stuck in a bedroom 12 Years and no one gives a shit"

"I told you all disability didn't discriminate and one day it could be you"

But you were all right Jack and scrolled on by.

And what happens?

They get sympathy, outrage, caring

what did I get

Fucking crickets that's what

People with Fibromyalgia have been suffering in silence for years and It is about time we started screaming to get some recognition and research done!

 Feeling like I have been hit by a truck today

Stressed to hell and back as no one listens to what I say

I am so sick of Amazon CS contradicting one another.

My headphones didn't work so need to return them, they expect everyone to have a printer or can walk to a drop off point.

I told them I was housebound and didn't have a printer so after the round and round of can you ask a friend she says she will arrange a pick up by Royal Mail yaaaay.#

Was asleep all day yesterday, woke today to find the parcel had not been picked up because it didn't have a code to scan on it, when Amazon had said just write the address and number on the package aghhhhhhhhhhhhhh

Tried to talk to CS again today and got the same old crap again.

Which part of chronically sick and housebound do people not understand?

They hate the disabled and make it more and more obvious daily so sick of it all.

 

Isn't that the truth, but do we listen?

I know I don't.

I know I have used this pic before but it just sums it all up.

I find it so hard to tell myself I am doing all I can.

We all want to be doing more.

The thing to remember is when we are gone who will remember "what we did"?

They won't they will remember who we were and how we made them feel.

We have to keep reminding ourselves of this daily so we don't go mad beating ourselves up.

To quote Do it on a dime from YouTube

YOU ARE ENOUGH

No idea what to write today

Not sure if these are supposed to be motivational or just life

Today I think I will be thankful.

I am thankful I can look at the snow and not have to go out in the -4 temperatures.

I am thankful we are all well (Disabilities aside)

I am thankful my son has a job he loves

I am thankful for all my YouTube subscribers who make me feel uselful and make me laugh daily.

I could add more and for me that makes today a good day.

Sending gentle hugs to those of you not having a good day and praying tomorrow is better for you all.

 Typical...

Decide to commit to doing something here daily and what happens?

Yup you guessed it a flare.

For those who haven't experienced one yet, for me it is like driving a juggernaut full speed into a brick wall and everything just stops and your entire body is screaming.

I have spent a week looking like the Michelin man hugging a heat pad and praying for it to end.

I suppose it was my body telling me to do less but if I did less I would be doing nothing.

So this proves the Pacing thing is the only way to go with this illness.

So if you are reading this and trying to juggle three things at once, put two down and just take things slowly. It is better to do it slowly than not being able to do anything at all.

 Another day another fight another lesson learned.

We have to listen to our bodies and do what we need to do to keep going.

I hate the fatigue but some days you just have to stop fighting it and just curl up with a hot drink and a good movie or sleep as long as you need to.

I used to set alarms to get up and press snooze umpteen times.

Now I just go to sleep when I am ready and get up when I wake. I am lucky I have grown-up kids and a husband and we work as a team.

He told me years ago "if you need to sleep just sleep" so that is what I do.

I get fed up with missing days but if I forced myself to get up when still fatigued my day would be pointless anyway as I would be fighting sleep for the entire day.

Do what your body tells you.

 Trying to explain to people that we woke up sick one day and will never get better is hard.

What is even harder is living with that knowledge and not getting bitter and twisted.

Every day, I try to smile and not let people know how hard life with Fibromyalgia is.

But maybe we should shout a bit louder to let people know we are here and maybe get the medical profession to take us seriously and find a cure.

So if you are on twitter or IG etc post and let people know.

 Pacing is that word you hear over and over but it's true.

But make sure and save that energy for something fun.

It is bad enough being in constant pain without only having the washing up to look forward to.

Weigh up what is really important to get done, do one of them daily, and take the rest of the energy for you.

Fibrofog is the gift that just keeps giving and giving.......

Only we can't remember!!

 

 It's amazing how you can deal with this daily and just keep going.

Others have no clue of the daily battles we face and with a smile.

You are a warrior!

 Another day another battle

Kick Fibromyalgia's Arse

 Gentle hugs to all and may your day be the best that it can :0) xxx

Fibro Funny of the day

 Someone suggested maybe I should do a quote or a meme of the day on here as I said I felt I had run out of things to say so here it is day 1 :0) xx

Google adsense is a nightmare

 

Why is everything so hard these days?

It's like swimming through treacle trying to get anything done.

Everyone talks in weird letters and short acronyms and I just can't keep up.

I am trying so damn hard to earn a few bob with my blogs and Youtube channels and feel like throwing in the towel.

I decided to check my blogs out as I hadn't used them in a while and there is money I have earned but not reached the £66 threshold to have it released and that will never happen unless I keep posting till I am 90.

Then I wanted to ad adsense to two other blogs I have and they say I can't until I fix something. So I click on the highlighted text to see what I need to do and it's all gobbledegook. Why they hell can they not write in plain english (or whatever language you speak) you need to do x, y and z. Nope they leave you in limbo to spend weeks going round in circles clicking links non of which help.

Then I thought I would put in a bit of effort and do a video a day in December on my YT channel and surely that would improve the subs and views NOPE. 

The other channel I took over in March made it to 1000 subs in December and I was thrilled and had found something I could do quite easily and upload quickly as I am reacting to peoples videos and need them up as soon as otherwise people lose interest.

I had it down pat. I could usually get it all done in a day, then monetization came into play. Now I can grade my own videos but YT keep overriding what I put. Then I have to wait for a manual review and by that time it's too late.

THEN just as I was ok with what I was allowed to do they moved the goal posts and give us no clue of why they have now decided our content can't be monetised!!

Plus I narrated two books for audible and so far haven't earned one penny.

I am chronically sick and bedroom bound, I thought I had finally found something I could do to perhaps get us out of this house but NO.

How many times can you kick a person before they just lie down and stop trying?

Long time no see

I used to be so good about updating this blog and adding things but it just got to the point where I felt I had said it all.

Most people are looking for a light at the end of the tunnel and I didn't want to be the one to say there isn't one!

At this point I have been stuck in my bedroom for 11 years and nothing is changing.

What I really need is a bungalow so I can interact with the family more and have a proper sitting room for us all to sit and chat in.

Our house is 1950's or older not fit for purpose and drafty as the sitting room is merely a corridor from the front door to the kitchen. It was originally a council house and we bought it as a stepping stone. Idea was we would do it up and move on in time.

Ahhhhhh that's when disability came and slapped us round the face. My husband broke his back at work and then developed severe depression which he shows no sign of recovering from and I was diagnosed with Fibromyalgia which just steadily progressed.

Doom and Gloom see! Why would I continue to write a blog when I have nothing happy or even slightly uplifting to say?

So I will add my Youtube playlist below and you are welcome to mooch through the videos and maybe get a few tips or tricks that may help you in your journey.

Oh and if you hear of a bungalow for sale for buttons give me a shout.