All over the place...

So its still the same day...only my legs have settled a bit and I'm thinking a little clearer now...
Last night was horrific... I was up and down all night with what I call my bone pain in my top part of my legs and upper part of arms...Fibro friend sitting in my chest and jaw...having a real party of a time...

Was up and down warming the hotti up to wrap up my legs for just a little relief... It helped a tiny bit...well it provided distraction in the night anyway....

When my eyes opened again thizmorning I was glad to see the light flood in...All be it I could still feel some pain...I knew the world would evolve around me now and I could somehow try to join in...

My weariness is showing and I've already be growled at for being surly....will have to try to keep my self under wraps a little better...just want to cry under the covers for a while!! Can't dwell on it any longer....push this shell of a so called body out of bed and think of what to do on this Sunday morning....
My mind is somewhat blank and cross at myself and this body and the world today!!
Will keep my my mouth closed as best as I can this morning....feeling very sensitive...will probably cry...
Good place to start....a hot shower......wash it all away.....it's nice....refreshing but takes so much energy...pain and tolerance.....

Decided to be brave and invite hubby to come and sit out in the garden with me....
As I thought sensitive me....tears.....but all good needed to be heard.....and we both needed to vent...
Living with an invisible disease is very difficult,draining,exhausting and that's for all the family members....
It's good to have the opportunity to make the invisible visible if only by having a discussion....with loved ones...a big thank to to all of my loved ones who take me to appointments..sit by my hospital bed.....time after time......listen to me wing...wine...talk....cry....vent....and are there to offer their valuable ideas and suggestions...and it doesn't matter if I'm not ready to embrace them....im still appreciate of everything that you are offering and saying ...and the time and energies that you are all putting in with me... Thanks everyone..you all know who you are...Love you all so much xxxand can't believe at times your all so tolerable..... So really do appreciate that....you'll never know how much really.....except through my words if you should happen to read them....

F is for Frightened of what is to come....and where this crazy disease is taking me.....
See where the next week takes me.....

February Update....

Well...as I've mentioned previously this is going to be my year of participation....
Wow what a statement that was....but I'm sticking by it....and I have even been participating in work...
And loving it!!!! Well loving the fact I love what I do....I work with amazing people....we all have amazing similar ethics...devoted to supporting children with inclusion...and participation....

Although I had been really struggling behind my four walls...in the inner sanctum...my very rude...obnoxious unwanted fibro visitor decided to pay me a surprise visit.to work......not just any visit...a grand entrance into my chest...where I was overwhelmed...it took me by such surprise I needed a moment to compose myself.
Excused myself as I momentralily.... shed some brief shock tears, took pain relief....wiped away the tears, took a deep breath and attempted to step back into my meeting...

Fortunately it was then morning tea time and I was able to find time to sit quietly and fight my unwanted visitor away...his strength today was tremendous...and mine weak...and tired..I knew that after taking several pain relieving tablets with breaky and a couple more again...he was not going to shift...and I was not going to cope....
It was embarrassing but my boss came out to me and although I looked pretty calm...She knew....and it was then I gave in to my unwanted visitor....and went to the emergency department.
I was given phentynl which is the only one I am not allergic to...so it was a very long day spent in hospital as they too grappled with my unwanted visitor....he even fought them...and was very persistent...
Finally I was home in the evening to rest...but he was still lingering in my chest and they told me to take endone...so I did.... Exhausted...drained...and still feeling some pain I snuggled with my cat and hot pack and finally drifted to a better place....for a few hrs anyway....

Since this day I have seen my pain specialist and I am now going to have more testing...I have continued to have constant pain bone pain in my arms and legs as well...well it feels like bone pain....
AM seeing a neurologist to have a full work up...will be interesting...
But anyway...meanwhile I have increased Topamx dosage 50mg per day so will see how that progresses...so I am now taking 150mg per day.
No side effects so that's one positive.....yeah.....

Will go now legs are really hurting.....