The Guilt....

I'm not feeling it today, I want to dissapear, not be in this body anymore, I'm so done with this, I'm sick and tired of being... well, sick and tired

Fibromyalgia is slowly eating away at who you I am, or rather who I used to be, my self esteem today is zero, I'm feeling unnecessary, like I could not be here and it would go unnoticed.

It's the half term holidays, All Hallows Eve is almost here, so we've carved pumpkins,  made decorations, bought costumes etc. my hands especially are agony, I'm tired, I really hurt, I'm more sensitive to noise and everything that goes with being so tired. The kids are bored, they want to do "stuff" or go "somewhere" but I can't do that, I can't do anything, due to medication I can't drive, so I can't take them anywhere.

With the kids being hemmed in the house is so noisy, I can't think, concentrate, or just "be", I'm so pissed off, grumpy, angry, but quietly so, emotionless almost.

Why am I so grumpy? Is it because I'm in pain - I don't think so,  it's been worse, I actually think it's guilt, guilt that I'm not the mum I was, guilt I'm not the partner I should be, guilt I can't always put a face on and pretend it's all peachy. Guilt about everything, it feels like I have the weight of household woes all on my shoulders....it's all my fault!
I desperately want to "do".... but at the same time I can't even sum up the energy to be even the least bit excited about anything!

As I write this the kids have been banished from this room, (they have only been in to check that they still can't come in about 20 times!) they are playing hide and seek, I'd like to hide... but I'd like for no one to seek please, I can think of nothing better than being curled in a silent, dark, hideyhole!
I think I need to sit in the shower, have a good cry, I mean a real tummy hurting from the soul sob, maybe I'll feel better, be able to pull myself together!

I'm sorry this post is so disjointed and generally a huge moan, but it's just how it is today.
I promised myself I would always be truthful here, even though I aim to put a happy face on for the rest of the world.

Today this is my truth.

Ria.

Flaring

I looked up the word "Flaring" thinking I might find a discription that would help non spoonies understand, I found this...

flare

  (flâr)

v. flared, flar·ing, flares

v.intr.

1. To flame up with a bright, wavering light.

2. To burst into intense, sudden flame.

3.

a. To erupt or intensify suddenly: Tempers flared atthe meeting. His allergies flared up.

b. To become suddenly angry. Used with up: Heflared up when she alluded to his financialdifficulties.

c. To make a sudden angry verbal attack. Usedwith out: flared out at his accusers.

4. To expand or open outward in shape: a skirt that flaresfrom the waist; nostrils that flared with anger.

v.tr.

1. To cause to flame up.

2. To signal with a blaze of light.

n.

1. A brief wavering blaze of light.

2. A device that produces a bright light for signaling,illumination, or identification.

3. An outbreak, as of emotion or activity.

4. An expanding or opening outward.

5. An unwanted reflection within an optical system or theresultant fogging of the image.

6. A solar flare.

Not one of these descriptions alone is much help, until you add up the ones about, emotion, fire, light, but even then it's not close to a description of a flare, so much so that I'm not sure why that term is used.

Fibro Flare. (from the dictionary of Ria)

A fibro flare is like a very sudden bout of flu, everything hurts, from your eye lashes to your toe nails. 

You get bursts of feeling cold, followed by a searing heat that feels like your blood is boiling and sweating so profusely you sleep on a towel. 

Your ability to concentrate is nil. Sleep is your only friend!

So, now you know what a flare is, sorry for boring you spoonies...

Thursday night my o/h likes to go to the pub over the road, he always asks me, I seldom go. However, for some reason I have no knowledge of I said I'm coming with you tonight.... Mitch was suprised and happy (I think) so I got changed, it was while I was getting dressed, (this can be enough to break me on the best of days) I realised, I'm not feeling very well, I really hurt!

Now you need to understand us spoonies are tough, we consider a pain level of around 4-6/10 level of pain normal, day to day.... so, we feel fine....

I'm sat precariously on the end of the bed trying to put a sock on, and sweating because a burning pain is ripping through me, in walks my o/h "are you ready" he says, "yup, on my way" I reply smiling..... 

The pub is about 100ft from our house, I get on my trusty scooter, no way I can walk it, not with my walker, not with Mitch on my arm and a stick in my hand.

Once inside, sat down, emergency tablet stash emptied, cider being drank, the evening passes me by in a hot'n'cold haze. I thought I was doing well, no one has guessed otherwise, I've even had a few "your looking well".... then the sweating started, we're not talking a ladies glow or even working man sweating... we're talking race horse sweat, my clothes are damp and oh dear, I'm crying, its like I just acknowleged how much pain I'm in,  in that one momen i stopped coping. My eldest son who had come in to join us was to hand, he obviously noticed, took my hand, gave me my stick and said "mum, I'm taking you home".

Today is Tuesday,  I do have vague recollections about those missing days, times where I was almost ok, but mostly it's gone, I've slept so much. 

I feel almost back to my normal, a little more tired, but that will take a few days.

painsomnia followed by a new day...

You know that time of the night, the time that everything is quiet, everyone is asleep, even the house has stopped making its settling down noises?
That's the worst time during the night to be awake... but why am I awake? Pain, searing, red hot pain.
I led in bed for what seemed like hours, trying not to move,  not make a sound, I didn't want to disturb Mr M, he has to be up in the morning for work.

So I get up; which in itself is a chalenge, but I do it biting into my lip in my quest to remain silent. Gabriel lifts his head, stands, follows me as I leave the quiet room. Sometimes I wonder if Gabe and I have a telekinetic link, he certainly knows when I'm in pain, or upset....or both!
Anyway, I digress 😶
Lots of people in the chronic pain community call this painsomnia,  hence my title.
I'm desperately tired, I've had a few high pain days so to get into a place of sleep is a relief, but tonight it broke through, so here I am, awake and in pain.
Gabe is being very attentive, dogs seem to just know don't they...

I did finally sleep, I have meds I can take when this happens, but they make it very hard to get up in the morning, I'm always reluctant to take them but tonight it's a must. 😕

I wrote this at 3.40am but didn't send it, maybe it was inbuilt spell and grammar checker lol... it needed some work! (Think gibberish)  😅

So today has been a good day.
I woke up to see my little one off to school, all I wanted to do was shut up the alarm and go back to sleep, but no, up I got, did all I had to do and showered.
(I will talk about showers another day)
This morning I had plans, yes I know, I actually had plans!  Donna my wonderful holistic therapist was coming to give me and my girl friend Swedish massages.
All I can say is MmmmmmmMmmmmmm....... It was totally amazing, she concentrated on my lower back which has been giving me more trouble than I'm used to, finishing of with a little Reiki. 😴 I could very easily have gone to bed post massage,  but I'm trying very hard to not sleep in the day after a bad night.

(I've done it, it's 8.30pm!)

So that's it from me, if you can think of anything you'd like to know, just ask in the comments and I will cover it in a blog. I will leave you with a picture of my guardian angel.....

Ria & Gabriel xx

Taken for granted.

Of course everyone feels like this every now and again, but that's not what I mean, I'm thinking about things I took for granted. I just saw a post on Facebook and it brought tears to my eyes. So here they are,  the things I didn't ever consider, I just did them....

The freedom of driving, to go when you like, where you like, I didn't have to ask, I'm always asking,  may I,  can you, I'd just go, music on, windows open, singing loudly to Billy Joel or similar, the world whizzing by, not a care, completely free.

I used to work,  I didn't really like my job, but I understood the value of it, yet I did take it for granted. Working was how I supported my children, even as a single mum I worked, I held my head high, my boys knew that to be paid ment I'd  worked hard,  I wasn't a scrounger! I'm now on a disability payment, a type of pension, but not earned.

Walking is a given, right? How many of you thank God/the universe for your ability to walk.... no, me either.... and then I couldn't,  not as I used to anyway. I used to walk all day long at work, then I'd walk some more with the dogs, just to potter about in the garden or the house, to quickly pop the laundry upstairs, or nip over the road.... I  can walk, with Mitch on one arm and a stick, or my trolley.... but that's not walking...not really.

I had an insatiable thirst for books, any kind of book, I'd read anything,  everything... upto and including toiletry/cleaner bottles while on the loo! It was nothing for me to read 2 or 3 books in a week, sometimes I'd read them simultaneously.... and remember everything that was going on in each, I didn't need a book mark, I knew what page was next,  I devoured them. They were my addiction. I struggle now, the print on my kindle needs to be large, and then when circumstances allow and I can physically read i rarely do as i don't remember what I've read,  so it's a complete waste of time .

Oh how I miss you shopping! On a day off I would just meander about in Wotton, Yate and Chipping Sodbury, picking something up to smell the freshness, or feel the quality. I have to rely on the reviews of strangers now, as they give items star values, often their idea of high quality and mine are quite different, so back it goes and I start again.

Have you noticed how bloody heavy pans are?  I'd never given it a second thought, I too often can't lift them, if you can't lift a pan, you can't cook dinner. Oven trays are another thing, they involve bending, holding onto and lifting (and hot) all in one go, each of these is a challenge, together they are nigh on impossible. Then you have the plates.... I drop things, enough said, lol!

I took myself for granted, the amazing things I was capable of,  my stamina, my ability to go to work, sort the kids, go to the gym, cook dinner, clean the house all in a day. I'd still have energy to get jiggy with Mr M. (well, on his birthday....hehehe)

That's what I took for granted most, me.

Trials & tribulations of Acupuncture!

Yesterday was acupuncture day, I see Lucy in Cirencester,  Mitch calls her the white witch as she really does work magic!

With Lucy is probably where I have the most laughs,  she is bonkers and I consider her one of my closest friends,  there is nothing she doesn't know about me, I can be completely honest about everything with no backlash.

I started acupuncture about 2 years ago,  I was a bit scared, I mean who actively seeks having needles stuck in them, but I was at a breaking point, I couldn't balance my illness enough to have even a snippet of a life. I was spending almost all of my time in bed, I could do very little for myself, all I did was sleep or try to be still in my haze of pain.

Lucy can't cure me, no one can , but she does bring me balance, she relieves pains where she can, helps me keep my momentum going, but then sometimes it stops....then we have a session like yesterday.

She called it quite a drastic treatment... I'm no expert so go along with whatever she thinks is best, so she started putting needles in the specific places, tweeking them until I had sensation. This went on for a while, then they had to come out. Sometimes when a needle comes out it does sting a bit, or you get an odd sensation, it could be nausea, stinging, hot, cold.... I've had all sorts of different feelings. The last needle came out and I swear to god a lightening bolt shot out of my foot!

"That's your energy moving again" said Lucy above my colourful language!

From that moment on I felt very odd,  I mean VERY odd!  For a start sitting with Lucy i really struggled to keep my eyes open, afterwards driving home Mitch said I behaved like a drunk.... I felt like I'd been driven home by the guy who broke the land speed record, everything was moving, the floor, the horizon wasn't even steady,  whirling past me at really quite a speed... I thought, this is going to be a long night!

As soon as we got home I went to bed, generally rest and water is all I require post acupuncture,  but this time I'm glad to have a bed rail,  everytime I've  woken throughout the time from then to now I've been gripping it for dear life, it's like nothing around me is stable, things keep tilting, it's a little like being on a swing, I'd like to get off now!

I know it will settle, Lucy reassured me as much this morning....please let it be soon.

***I'm sorry if this is disjointed or actually makes no sense,  I'm using Google speak, as typing on a whirlygig is tricky, I can't read it back as I'm too tired and my eyes won't stay open, so I'm hitting post with my fingers crossed, see you next time!

Ria & Josie 

And so I begin....

So, my first ever post, this is rather daunting... miles of empty whiteness spreading out in front of me.
I'm not a writer, thanks to my foggy head my vocabulary is now sadly lacking, but who knows this might help. Do feel free to comment, ask questions... but please take no notice of poor spelling and/or punctuation.

I'm Ria, mum of 3 boys (19, 15 & 10) Fiancé of Mitch (o/h) and companion to my 3 dogs, but mostly despite everything else I am, I mostly feel disabled. I am disabled, but I'm also much more, I'm told I'm strong, beautiful,  funny.... I could go on, but I feel my head shaking at the very writing of these few words, I don't feel it, my body doesn't want to feel it, so where and how do I start in believing it?
My condition is Fibromyalgia,  if you don't know what this is, please do Google it, it's a shit storm of hell that rains down on my body on a hour by hour basis.  There are several "add on" issues with this condition, but believe me when I say you do not want to know!

I live in a beautiful part of the world, a small(ish) village surrounded by greenery on the edge of the Cotswolds, when I was fit and well I'd galavant around the fields with my dogs, leaping over stiles (maybe not leaping, but it reads well, yes?) wading in the many muddy brooks throwing a slobbery dog toy, but now the only thing I throw is my back and some days i can barly lift my arse off of the sofa never mind leap!

Being disabled, unable to walk for more than a few meters, unable to drive and having a very busy self employed o/h means I don't leave the house often, I guess I could catch a bus.... ah, there are no buses.... ok, there are, but so few and far between that they may as well be non existent!
- Did I mention that these buses are not the swanky type in "town" that disabled people can actually get on,  I'd need a bloody pole volt, although I'm not very convinced even that would help, so these four walls are my life.
This house, this home is my safe haven, my pyjama paradise but is also my prison all depending on my mood and how sick to death I am of everything and everyone, I don't discriminate,  if im pissed off, that's it... everyone gets it!
                                                                                  (Except the dogs)