And so ........

Today i took my two doses of meds with no serious effects tho i'm still feeling uneasy and anxious when i first take them, i noticed yesterday that i was very stressed and anxious which is a new thing for me , today its not too bad , but so far the pain is just as bad, severe burning in my legs and my skin as i write :-(

I was under the impression that Gabapentin is a pain killer but it isn't , the way it works is to deal with the nerve pain and so act as a bridge conductor in my brain ( scary stuff) and it doesn't seem to be working anyway . I'm beginning to think i just have to suffer as nothing seems to help ( long term anyway)

I don't know what to do next , i would appreciate comments and perhaps some info that may help me . UK rules on medication are very strict tho so anything outside the UK may not be accepted by the medical profession.

I would also like to hear from other people who suffer cfs/me or fibromyalgia , share your experiences with me 

Hugs Kira x

Side Effects

Today my medication was upt by another tablet this morning, I had to take a sleeping tablet in the wee small hours of last nite for i was in such pain, hence the decision to upt my meds again this morning . So now i am taking 900mg of Gabapentin in the morning AND late afternoon , but only 600mg at nite .

Today has been awful for me !!!!!!!!!!!!!!!!!!

I started shaking and trembling , my heart was pumping and i felt so ill , this lasted about an hour but i had to go to bed and lay down i felt so bad. I got up after sleeping maybe an hour and a half , time to take my other meds :-( same effect and i had to go back to bed, this time i slept almost 3 hours . Got up and i'm feeling ok considering . Still very tired at the moment but at least now my heart feels normal again. Side effects are horrid but i know that they are only temporary . My pain levels today have been low and minimum , don't know if that's because i've slept most of today or if the tabs are working ;-) I will be able to judge better as the evening goes on .


Hugs Kira x

struggling

Its been a little while now since i wrote my blog , over Christmas & New year i survived the festive   period but as always payback is hard and just floors me . So much pain and difficulty in even using my hands as my joints are all stiffening up and are very painful . I went to acupuncture last Tuesday but found it so very painful that i couldn't bare the needles at the bottom of my spine and i am finding that now it isn't helping me . My consultant at the hospital has decided to see me mid March to discuss hypnotherapy til which time i am not longer getting acupuncture so i have no idea how things will be for me til March . 

I have recently registered with a new surgery and i saw my new GP on Monday, she was so nice and so understanding . However unlike my last GP who said i was on the full dose of Gabapentin , my new doctor has told me that i can take another 2 tablets a day , so this is now 2 in the morning- 3 in the afternoon, and 2 at nite , i've to take them at this dose for a week then add in another one in the morning . She also said that if they don't help then we can discuss options to change over to Pregabalin ( something my other doctor just didn't discuss with me ) so i have faith in this new doctor that i am being listened to and appreciated as someone who has to deal with chronic pain 24/7 . 

Yesterday i was so down, how i wish for just one day without pain, how i wish that i could just be me for one day . I miss just being able to get dressed and go out , i miss doing normal things and i would do anything just to be independent again . There, my moan for today is out of the way now lolgiggle 

I just want to mention that my thoughts are with anyone who suffers chronic pain or disability , sometimes we are the forgotten ones and we feel that our battle goes unheard . Also our carers , they need support and someone to turn to , yet here in the UK this is an issue that just isn't focussed on enough .

hugs 

Kira x

Sometimes

Sometimes loneliness goes much deeper than just not having company. It can eat at your every being and the sadness shrouds over you like a blanket. I've heard it say that the things we lose are brought back to us in other ways, I have yet to believe this , for the things i have lost could never be replaced , they are not material things, they are things that made me the me that i was, and now i grieve for that person. I know i should look forward and i do mostly, but when you are grieving for things that have gone its very difficult to leave them behind and forget.

The me that was is no more , i am now a different person, living in a broken shell with the same heart, the same passion, the same needs and wants , the only difference is now  'they are unachievable'

Christmas was good, Hogmany was good, but the days after were demanding and now i am tired, weary and my spirit is lonely . I smile, i communicate , i try but i sometimes feel so alone

Kira x

Almost the end of another year

Well, Christmas is over and we now face the next few days with mixed feelings and emotions . We are lost in our own little world . Some i'm sure will be glad when all the festivities are over, for this time of year is not always a happy time, some are lonely and homeless, some are in poverty , some are without their family , and some just hide away until normality resumes. My thoughts are with all those vulnerable people and my heart weeps for their sadness. I used to work voluntary for the Samaritins , this opened my eyes to such sadness and desperation , no-one should have to live like that, alone, desperate and feeling that death is the better option to living .

Spare a thought for all those people , and lets hope that 2013 is a better year for everyone .

I fight daily with my illness , but when i think about others less fortunate than myself , i somehow feel that my problems are tiny .

Kira x

Almost Christmastime

I wish everyone who visits my blog 'a very happy Christmas' I hope that Santa is good to you and all your Christmas wishes come true , Have a devil of a time :-)  hugs Kira xx

Hatha Yoga & Candle light meditation

Colin , my husband, has for more than half his life time, followed the practice of, and taught Hatha Yoga . However since last year when I became ill , he gave up teaching to become my full time carer, only now and then doing voluntary practice . Last night was one of those times. 

He agreed to do a practice and candle light meditation in 'The merchant city Yoga studio' Glasgow , all donations going to charity . The turn out was amazing , 50 attended . Judi Farrell organised the event , which took place in her studio . I would highly recommend anyone who is interested in Yoga to go along or google as there are many different practices on offer .

I attended with Colin last night , going in was a bit of a struggle as i had to be carried up 2 floors , broken into 4 sets of stairs in my wheelchair as its not wheelchair friendly and also if anyone has difficulty walking then its important to know that they have to climb stairs, saying that i managed at a snails pace and with help to walk down the stairs at the end of the practice.

THE PRACTICE

This was held by Colin , I ofcourse couldn't physically take part , but i went thro this in my head and the benefit i felt emotionally was amazing . After practice Colin then did a candle light meditation leading into yoga nidra ( this is a deep relaxation practice )  although again i was in my wheelchair , i haven't felt so relaxed and my body at peace since i became ill, during this i didn't jerk or feel any pain , and when i came out of it , I felt such a emotional connection and spiritual peace and feeling of stillness, it was beautiful . 

I've spoken to Colin about how i felt and we have both decided to try me with regular 'yoga nidra' in the hope that it continues to help me .


To anyone reading this , I would highly recommend they seek out a Hatha yoga and try this , I can almost guarantee that it will work wonders for them and their condition .

I'm tired today, but no more tired than i would normally be, and i have to say again how much I enjoyed last night . It was so good to also see people I knew from when I practiced yoga with Colin .


Thank-you to Judi for organising this event and to Colin for giving his time to lead the practice . When I know which charity the donations from last nite will go to , i will add this into my blog .

There was £255 raised for charity , going to 'Fareshare Glasgow' who are a charity helping people in the local community who are in food poverty .


Kira x