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.