A successful doctors appointment

Today is my first GP visit after seeing the doctor at the pain clinic a few months back, who after looking through my notes agreed i did in fact have Fibromyalgia and he started me on Gabapentin.

I have had so much trouble over the years with doctors regarding my pain.

 My Endocrinologist and Neurologist were great! They set up blood work, MRI scans, a muscle biopsy and X-rays, which showed absolutely nothing to why i'm feeling this way and in so much pain. I did have Graves disease and had my Thyroid removed as they thought it was causing the pain, which it wasn't and i now suffer from the Hypoparathyroidsim which i will write about one day.

I eventually saw a Rheumatologist who is usually the main man to officially diagnose Fibro, he gave me a medical and stated i had a lot of tender points and restriction in movement.

He told me, "It's Chronic Pain Syndrome and it will go".

So now three years later, it still hasn't gone! My GP has told me i am now being reffered to a specialst for my Fibromyalgia and Chronic Fatigue.

I am so happy it has finally got to my GP after my Endocrinologist told me this years ago after all my tests came back clear, i even have paperwork of the diagnosis which i did take to my Pain clinic.

When i first got the inkling of it being Fibro, i read a lot of people finally got diagnosed after 5, 6,7 years and it baffled me! I now understand why it does take so long, so many specialists throwing different answers in the mix.

If you are in the middle of a diagnosis....... keep fighting!

Blood work day!

Here it is again, hospital blood test day which i have attended weekly for the past 3 years. These tests are to monitor my calcium levels as i suffer from Hypoparathyroidism after an operation to remove my Thyroid due to Graves disease, which they also though was causing my pain which was later diagnosed as Fibromyalgia, Chronic pain Syndrome and Chronic Fatigue syndrome.

On my way to hospital i received a message from my cousin to tell me my Granddad has had a fall and hurt his back, he was currently in an ambulance to the hospital i was attending.
I had my bloods done quickly and rushed around to see my Granddad, his brother was there to who followed him down behind the ambulance (my great uncle but i call him uncle).
My Granddad is a big man with a bigger heart and i know if he could help it he would have tried to hide the pain he was in from me so i didn't worry, which seemed near enough impossible.
The porters came and wheeled his down to the X-ray department to check there were no breaks etc, my uncle went outside for some fresh air whilst he was in so i sat outside the room and waited.
I will never forget the painful screams that were coming from the room whilst they tried to position my Granddad for an X-ray. My 74 year old Granddad seemed in so much pain to wail out through the hospital corridors with nothing i could do to help him.
This is something i will never tell them, unless they read this of course but i doubt it, whoever i spoke to on the phone i reassured them he was fine and hes had an X-ray and painkillers which were kicking in, which they were i didnt lie...i just hid parts of it...white lies?

I am quite glad it was me there as i think now i have hardened a bit, seeing somebody in pain, due to the pain iv endured over the years, i know if it was my mum, Nan, aunties they may have broke down.
I waited there until he was wheeled out and i smiled at him, It will be OK!

He was discharged later that day as the X-ray was clear, he seemed to have strained a muscle which is good news.

Sadly the anxiety i endured between setting of from home to the hospital ( even though i didn't show it), it caused my calcium levels to drop, my levels were 1.83...normal should be around 2.4, so now i'm being closely monitored again!

Day 2 of School being out.

My Feelings: USELESS

The weather hasn't been the best, typical English Summer hey!.

Yesterday i promised the Kids we can go to the park today, then today came and my pain is still bad.

This is when my mood goes way down. 

Why am i like this? 

What did i do to be given pain like this? 

My energy is almost depleted, i am on the sofa downstairs with my notebook, my legs are aching so bad, its in my bones i'm sure! My ankles and wrists feel splintered when i move, my neck and shoulders are no better than my legs. WHY?!

My memory isn't the best at the moment so i'm going to refer back to this and write it in my little note book (yes another notebook lol) for my CBT appointment as all i can tell them is I've felt down but then cant put into words why, its like my mind isn't anywhere!

At the moment the kids are playing Mine craft on the Xbox, i feel like a failure that they're 'stuck in', the TV is basically looking after them today, you know when you call people for sticking their kids in front of the TV all day, i'm that today and i couldn't feel any worse about it.

So yeh, this is a mum with Fibromyalgia, the raw deal!!

I'm not sure how other parents cope with Fibro and children at home when they're in a flare, i know online like Facebook people make out they are doing amazing things and even though behind closed doors after taking numerous pictures of their child baking, the house is a mess, the children are running around screaming and the mum is on the sofa pulling her hair out...i want to see THEM pictures..but that's not what i see and its why i feel so bad, but to be honest i'm not posting pictures of today, or updating a status about today, which really i should do and im pretty sure other mothers would appreciate the raw motherhood updates rather than the " Amazing day out at the zoo!" pictures.

How do other Fibro parents cope the best during the holidays? Do you also have days like this? 

Happy Monday :)

To anyone who reads here....have a Happy Monday :)

Silent Sunday

Where is my pen!

Today is dedicated to my pen! All i want to do today is to get some work done on the computer...I write any research worth noting down by hand in a notebook. That is my plan...if it wasn't for my pen keep disappearing into another dimension!

Learning to pace myself

Last week i got given a diary sheet to fill out from my CBT appointment. HOLY MOLEY! Did i realise how much wandering about i do? I'm not sure if its just me being stubborn or my brain fog choosing what it wants to remember or forget of my daily life, to have this frosted glass effect on where i'm going wrong.

For example: Day 1 - Monday.

Got up. Had my Gabapentin, 60mg Codeine, 1000mg Paracetamol, 800mg Ibuprofen. Got the kids ready for school. Lunches packed. School run done.....Walked to my grandparents (which i didn't realise until my therepist told me -one way is 3 miles!)

So i sat down at my grandparents for a few hours. Had more meds. WALKED BACK HOME! Did the shopping. Picked the kids up. Got home at 4pm.

                     Day 2 - Tuesday :
                     USELESS. I had to cancel my sons rugby practice as i couldn't get him there

                     Day 3 - Wednesday
                     USELESS. I had to cancel my hospital blood test and rearrange it.




It does suck not being able to do these things for myself, i love walking places, i love exploring and following my interests everywhere, but i need to lose this stubbornness! Due to this walk i lost 2 whole days!

Pace myself!

Drugs are bad, they numb you so you don't feel things and don't feel the damage you are doing, but they help you as well, to get you through the day..

I cannot go for long walks to the shops or on holidays or to castles, some people can, everyone's limits are different. I am lucky in a sense that im not bed/house bound, but i am only 28 and i'm still fairly young and i hope it doesn't get worse as this is not fun for anybody with me......this is why i push people away.