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 .
Saturday 29 December 2012
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
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 .
Saturday 22 December 2012
Almost Christmastime
Friday 21 December 2012
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
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
Sunday 16 December 2012
Shopping
Its been about 2 months since i was last outside, today Colin took me out to do the last of our Christmas shopping. It felt good to be outside, breathing in the fresh air, even tho a tad cold . I even managed to put on some make-up .
Its a bitter sweet pill for i get so frustrated at not being able to look at the things i would normally spend ages looking at ( dresses and make-up , girlie things) and i feel so envious at other people who just take walking and shopping for granted , its true that you don't miss what you have until its gone. However Colin is really good and doesn't pressure me in the least :-) I'm aware of so many things now, wheelchair friendly shops and also the ones that are impossible to enter, Friendly staff who don't only talk to Colin and ignore me as if because I am in a wheelchair I become a non person , and people , ordinary people who just stare .....
On my return home I had to go to bed I was soooooooooooooooooooooo tired that I slept for a good few hours , but I slept with a smile in my heart.
Today was a good day
Kira x
Its a bitter sweet pill for i get so frustrated at not being able to look at the things i would normally spend ages looking at ( dresses and make-up , girlie things) and i feel so envious at other people who just take walking and shopping for granted , its true that you don't miss what you have until its gone. However Colin is really good and doesn't pressure me in the least :-) I'm aware of so many things now, wheelchair friendly shops and also the ones that are impossible to enter, Friendly staff who don't only talk to Colin and ignore me as if because I am in a wheelchair I become a non person , and people , ordinary people who just stare .....
On my return home I had to go to bed I was soooooooooooooooooooooo tired that I slept for a good few hours , but I slept with a smile in my heart.
Today was a good day
Kira x
Thursday 13 December 2012
Hope
When there is no-one to turn to
and life seems so cruel.
When your heart is aching
and
your only friend is your own shadow.
When you would do anything
just to feel the
arms of love surround you -
When you feel there is no longer a will to go on;
Then,
Look deep inside your heart.
You will find me there.
I am your shadow.
I am the arms of love.
I am the one who will not turn from you.
And, in times of need, I will never let you down.
I am hope.
copyright Kiara Howie 2012
copyright Kiara Howie 2012
pain management & alternative therapies
I spoke to my doctor via telephone consultation this morning , asking him to up the strength of my Gabapentin , my pain is so intense and now spreading to other new parts of my body plus my bones ( I didn't think i could suffer any more than i do !!!)
Anyway he has informed me that i'm on the maximum i can be of Gabapentin and so is giving me high strength co-codamol to take alongside. It seems I have no option but to dope myself up til i cannot function properly so to ease my pain in some way. I just cannot imagine the rest of my life living like this , its been over a year now ......
I guess that from somewhere deep inside, we just carry on in the hope that we find a way to cope and live the best quality of life that we can considering our conditions.
I feel a little abandoned by the medical profession , but I also understand that there is only so much that they can do .
I tried alternative therapies about 6 or so months ago , The Rapha Centre came highly recommended by a friend of Colins , very expensive tho and if it wasn't for the kindness of Barry we would never have managed to go . We are / I am forever humbled by his unconditional kindness . However even tho i was put on an in-depth course of minerals and vitamins I'm afraid it didn't work for me , i stuck to it for 6 months taking up to over 20 tablets a day all in , but in the end I chose to not go back. That isn't to say that it wouldn't work for everyone , you won't know until you try .
So I'm sitting here , just a normal day for me as my life is more or less a life of being housebound , its freezing outside so its going to be another day at home , for its far too cold to try to venture out . My daughter came up for a little while, it was nice to see her and Toni , but tiring , Colin did most of the talking , i even find talking tiring isn't that crazy !!!!!
Kira x
Anyway he has informed me that i'm on the maximum i can be of Gabapentin and so is giving me high strength co-codamol to take alongside. It seems I have no option but to dope myself up til i cannot function properly so to ease my pain in some way. I just cannot imagine the rest of my life living like this , its been over a year now ......
I guess that from somewhere deep inside, we just carry on in the hope that we find a way to cope and live the best quality of life that we can considering our conditions.
I feel a little abandoned by the medical profession , but I also understand that there is only so much that they can do .
I tried alternative therapies about 6 or so months ago , The Rapha Centre came highly recommended by a friend of Colins , very expensive tho and if it wasn't for the kindness of Barry we would never have managed to go . We are / I am forever humbled by his unconditional kindness . However even tho i was put on an in-depth course of minerals and vitamins I'm afraid it didn't work for me , i stuck to it for 6 months taking up to over 20 tablets a day all in , but in the end I chose to not go back. That isn't to say that it wouldn't work for everyone , you won't know until you try .
So I'm sitting here , just a normal day for me as my life is more or less a life of being housebound , its freezing outside so its going to be another day at home , for its far too cold to try to venture out . My daughter came up for a little while, it was nice to see her and Toni , but tiring , Colin did most of the talking , i even find talking tiring isn't that crazy !!!!!
Kira x
Tuesday 11 December 2012
Still .....
I had my acupuncture this morning , alot of pain before i even got to the hospital. The winter cold attacks my bones, mornings are not good for me either, my joints are very stiff and its difficult to move .
I'm still very down , tried to talk to Colin but the words won't come , so i only tell him a little of what's in my heart . I don't want to worry him, he's such a good man, he loves me dearly and i him , how i wish our life together was different, it wasn't meant to be like this.
I've slept most of today , i'm very tired and still have a touch of this flu that isn't helping. I'm so weary ....
I don't know if i'm going to continue with my treatments. I'm sick and tired of constant medication, sick and tired of needles , at this moment in time i just want to give up
and still life goes on ........
We cannot change what is for us , we have to accept or give in, I believe that things happen for a reason and its the battles in life that makes us the people we are , from somewhere deep within we find inner strength to go on , maybe i just need to refocus somehow and find my strength again to help me carry on .
Kira x
I'm still very down , tried to talk to Colin but the words won't come , so i only tell him a little of what's in my heart . I don't want to worry him, he's such a good man, he loves me dearly and i him , how i wish our life together was different, it wasn't meant to be like this.
I've slept most of today , i'm very tired and still have a touch of this flu that isn't helping. I'm so weary ....
I don't know if i'm going to continue with my treatments. I'm sick and tired of constant medication, sick and tired of needles , at this moment in time i just want to give up
and still life goes on ........
We cannot change what is for us , we have to accept or give in, I believe that things happen for a reason and its the battles in life that makes us the people we are , from somewhere deep within we find inner strength to go on , maybe i just need to refocus somehow and find my strength again to help me carry on .
Kira x
Another Day
Why is it that we don’t really appreciate what we have until it’s
gone?
Most of us live our life in dreams, the dreams of the broken
The hopes of the heart
Why it that we really don’t see what is is happening outside our
world
The loneliness of the elderly
The pain of the abused
The heartache of the victim
To live another day in your arms, comforted and not alone
To know my dreams are sweet and my nightmares few
To have my heart kept in safety, trusted til the end
No longer the victim
No longer the abused
No longer the pain of helplessness -my only friend
Why is it that we don’t appreciate what we have until it’s gone?
Why do we live in pain and emptiness?
Always looking behind closed doors
Yet our prayer reaching out to hold the hands of hope
Monday 10 December 2012
Different Walls
I'm so down today, can't stop crying .....
I feel my life is useless, i rely too much on Colin he doesn't deserve this , and i'm so unhappy inside for i feel i have lost the person he fell in love with, the happy, vibrant, confident woman he met is no more .
I'm in so much pain, it doesn't let up , i'm so weary and tired, and i feel constantly ill. I can't remember the last time i was outside , doing something nice , its been a long time. it seems i only go to the hospital for my treatments and back home again. I never see anyone , i never have company of other females. Oh. my daughter comes up more now, but her visits are always with the kids and her time is spent telling me her woes , and telling the kids off for something or other . Her heart is in a good place but she just doesn't know how desperately I need to talk, how i would give anything just to have girlie time with her .
I no longer feel attractive , to myself or to my husband , I have put on so much weight -i.m now 3 sizes up to what i used to be when i was well. My hair is now gone , i loved my long black hair , now its all gone , i thought i would go blonde, get it cut so it would be easier to handle . I went to the hairdresser twice , it cost a fortune to sit in the chair for 6 hours on those two occasions , i still don't know how i managed it .My hair was ruined with the chemicals, and my health didn't help so i decided i can't do this anymore and had this mad idea to just cut it all off until all the colour was even enough to get my hair possibly done at home, i bought a few wigs and started my plan .
I suited them, but now i just look at them lying in a drawer and to be honest i wonder if i'll ever feel well enough to put my make-up on , get dressed and not look like a drag queen who's very tired . I used to love make-up , i now look in the mirror and just see a very tired woman , it shows in my face , it shows in my eyes, and to be honest i now avoid mirrors as much as possible. I used to work out regularly, circuit training including weight training, I've been told that this possibly helped me in this battle against Fibromyalgia as my muscles were strong , but now i can't even lift a cup sometimes without it feeling really heavy, i can't reach up above my head without discomfort and pain. My muscles spasm, they hurt intensely and my skin burns , I have pain all over my body , Can you imagine what this must feel like every day of your life 24/7 ? this is my life now. I wonder how many of you who read this feel the same as i do , how many of you can only imagine what it must be like , how many of you try to but really have no idea . I think when you are around someone who suffers long-term illness then its easy to become sensitised to it, because it becomes the norm for carers too .
I go for my acupuncture tomorrow, i've not been for a few weeks because of this flu i had , i still feel a little unwell but not so bad , its mainly my cfs/me and fibromyalgia that is there , always there ...I dread my treatment tomorrow , its a bitter sweet pill for its so painful yet it does help me . I haven't felt it benefited me over the past month or so tho, but that's just because i've been in an emotional turmoil with moving house etc
Colin has worked so hard to make this flat as best it can be for us , i see him looking tired , he also looks sad and i wonder if he is sad because of me and what our life has become . I'm so sensitive , i remember my uncle Tom saying years ago when speaking to my ex 'treat her with kid gloves' I now, only now understand what he meant by this. Tom was more like a brother to me , we were only five years apart and we had an incredible strong love for each other , he was cruelly taken when he had just reached his 40th birthday , a tumour and secondary cancers, the day he died a big part of me died with him. I miss him so much .
I also miss my mum , crazy i'm 58 and i miss my mum , stupid me .
So i sit here day after day , sleep alot and try my best to do little tasks but it isn't always possible and i feel so useless .
I feel for Colin, I'm not the best patient and he has to see me like this every day ! I know that i do or say things that comes out all wrong, I know that sometimes i can be stubborn and also unthinking, but i don't mean to be and i don't want to drag others down with me , when i feel like this i just wish i could hide away , i want to run but i can't even walk so i'm stuck here no matter what , I haven't even got the courage to ......
what a coward i am
Different walls , same emotions, fears , and pain tho , when will it ever end :-(
Kira x
I feel my life is useless, i rely too much on Colin he doesn't deserve this , and i'm so unhappy inside for i feel i have lost the person he fell in love with, the happy, vibrant, confident woman he met is no more .
I'm in so much pain, it doesn't let up , i'm so weary and tired, and i feel constantly ill. I can't remember the last time i was outside , doing something nice , its been a long time. it seems i only go to the hospital for my treatments and back home again. I never see anyone , i never have company of other females. Oh. my daughter comes up more now, but her visits are always with the kids and her time is spent telling me her woes , and telling the kids off for something or other . Her heart is in a good place but she just doesn't know how desperately I need to talk, how i would give anything just to have girlie time with her .
I no longer feel attractive , to myself or to my husband , I have put on so much weight -i.m now 3 sizes up to what i used to be when i was well. My hair is now gone , i loved my long black hair , now its all gone , i thought i would go blonde, get it cut so it would be easier to handle . I went to the hairdresser twice , it cost a fortune to sit in the chair for 6 hours on those two occasions , i still don't know how i managed it .My hair was ruined with the chemicals, and my health didn't help so i decided i can't do this anymore and had this mad idea to just cut it all off until all the colour was even enough to get my hair possibly done at home, i bought a few wigs and started my plan .
I suited them, but now i just look at them lying in a drawer and to be honest i wonder if i'll ever feel well enough to put my make-up on , get dressed and not look like a drag queen who's very tired . I used to love make-up , i now look in the mirror and just see a very tired woman , it shows in my face , it shows in my eyes, and to be honest i now avoid mirrors as much as possible. I used to work out regularly, circuit training including weight training, I've been told that this possibly helped me in this battle against Fibromyalgia as my muscles were strong , but now i can't even lift a cup sometimes without it feeling really heavy, i can't reach up above my head without discomfort and pain. My muscles spasm, they hurt intensely and my skin burns , I have pain all over my body , Can you imagine what this must feel like every day of your life 24/7 ? this is my life now. I wonder how many of you who read this feel the same as i do , how many of you can only imagine what it must be like , how many of you try to but really have no idea . I think when you are around someone who suffers long-term illness then its easy to become sensitised to it, because it becomes the norm for carers too .
I go for my acupuncture tomorrow, i've not been for a few weeks because of this flu i had , i still feel a little unwell but not so bad , its mainly my cfs/me and fibromyalgia that is there , always there ...I dread my treatment tomorrow , its a bitter sweet pill for its so painful yet it does help me . I haven't felt it benefited me over the past month or so tho, but that's just because i've been in an emotional turmoil with moving house etc
Colin has worked so hard to make this flat as best it can be for us , i see him looking tired , he also looks sad and i wonder if he is sad because of me and what our life has become . I'm so sensitive , i remember my uncle Tom saying years ago when speaking to my ex 'treat her with kid gloves' I now, only now understand what he meant by this. Tom was more like a brother to me , we were only five years apart and we had an incredible strong love for each other , he was cruelly taken when he had just reached his 40th birthday , a tumour and secondary cancers, the day he died a big part of me died with him. I miss him so much .
I also miss my mum , crazy i'm 58 and i miss my mum , stupid me .
So i sit here day after day , sleep alot and try my best to do little tasks but it isn't always possible and i feel so useless .
I feel for Colin, I'm not the best patient and he has to see me like this every day ! I know that i do or say things that comes out all wrong, I know that sometimes i can be stubborn and also unthinking, but i don't mean to be and i don't want to drag others down with me , when i feel like this i just wish i could hide away , i want to run but i can't even walk so i'm stuck here no matter what , I haven't even got the courage to ......
what a coward i am
Different walls , same emotions, fears , and pain tho , when will it ever end :-(
Kira x
Sunday 9 December 2012
the flu V cfs/me
I thought by last nite I had started to beat this dreaded flu , but no i had an awful nite with waking moments that seemed to go on endlessly throughout the nite and moments of being unable to breath, at one point actually breathing directly from a bottle of Olbas Oil , waking to find it dribbling down the side of my face ( yuk)
Not much change today i'm sorry to say .....
I know that having cfs/me or underlying illnesses can make flu so much worse and also take longer to leave our bodies, crazy really when i think back to how i initially got cfs/me , yes you've guessed... I had a bad dose of the flu, followed by a chest infection , followed by chronic fatigue syndrome ie cfs/me . So my head now tells me why would my body want to fight this still as its been fighting the initial virus for so long now and still it hasn't left my body !!!!!!!!!!!!!!!!!!!!!
Maybe it just enjoys its host so much that this top up flu has now also decided to stay and keep the old virus company ..... trying to visualize a family of virus in my body, making themselves comfortable , getting to know the old virus and catching up on the latest body news ...
Does flu make you go a little insane or is that just how i am lolgiggle... still trying to see the funny side of things and stay positive ...
So to all you flu sufferers out there , I wish you well , remember you are not alone, even if it is just sharing the company of unwanted virus and illness
hugs, Kira x
Not much change today i'm sorry to say .....
I know that having cfs/me or underlying illnesses can make flu so much worse and also take longer to leave our bodies, crazy really when i think back to how i initially got cfs/me , yes you've guessed... I had a bad dose of the flu, followed by a chest infection , followed by chronic fatigue syndrome ie cfs/me . So my head now tells me why would my body want to fight this still as its been fighting the initial virus for so long now and still it hasn't left my body !!!!!!!!!!!!!!!!!!!!!
Maybe it just enjoys its host so much that this top up flu has now also decided to stay and keep the old virus company ..... trying to visualize a family of virus in my body, making themselves comfortable , getting to know the old virus and catching up on the latest body news ...
Does flu make you go a little insane or is that just how i am lolgiggle... still trying to see the funny side of things and stay positive ...
So to all you flu sufferers out there , I wish you well , remember you are not alone, even if it is just sharing the company of unwanted virus and illness
hugs, Kira x
Saturday 8 December 2012
The Flu :-(
its been a while now since my last blog. Since then i have moved house. So many emotions, so much pain, so many tears that went with the move, i didn't realise how stressful or how ill i would become just with the move . however in the end this move has been the best thing i could have done as i am in a lovely flat that is specifically designed to help me with this disability and make my quality of life so much better.
I have been bedridden also for this past week with the flu, still feeling poorly , but now able at least to get out of bed for small spells at a time . Thankful for small mercies i embrace those moments and try to not dwell on how ill i am feeling. To think i also had the flu jab which floored me for a week too !!!! wont be getting it next year that's for sure !!!!
I watched the first snowfall of winter from my lounge window , it was in the small hours of the nite, and so so beautiful to see :-) I love to watch the snow lay a blanket of softness all around, untouched , embracing natures trees and covering the ground , mother nature so beautiful ......
It'll be Christmas before we know it :-)
Kira x
I have been bedridden also for this past week with the flu, still feeling poorly , but now able at least to get out of bed for small spells at a time . Thankful for small mercies i embrace those moments and try to not dwell on how ill i am feeling. To think i also had the flu jab which floored me for a week too !!!! wont be getting it next year that's for sure !!!!
I watched the first snowfall of winter from my lounge window , it was in the small hours of the nite, and so so beautiful to see :-) I love to watch the snow lay a blanket of softness all around, untouched , embracing natures trees and covering the ground , mother nature so beautiful ......
It'll be Christmas before we know it :-)
Kira x
Wednesday 21 November 2012
organised chaos
I'm sitting here in the middle of a dream, i am helpless as i watch everything around me slowly disappear. My home , my castle , it took so much courage to move here at first, it took so much courage to be independent as i'd never been solely on my own before . So many memories of my life here seem to project in front of me like a watery picture, then disappear like mist , evaporating in front of my very eyes.
Almost done now , this dream will soon be over to make room for reality , and still i sit here unable to do anything but watch , as my life moves on to another stage .
Kira x
Almost done now , this dream will soon be over to make room for reality , and still i sit here unable to do anything but watch , as my life moves on to another stage .
Kira x
Monday 19 November 2012
New Beginnings
I move with my husband at the end of the week to a purpose adapted flat for disabled people , This is going to make a big big difference to my quality of life , I,m actually beginning to get butterflies and i feel quite excited about the move. Stress is now being taken over by happiness and the thought of
.NEW BEGINNINGS :-) x
Kira x
.NEW BEGINNINGS :-) x
Kira x
Sunday 18 November 2012
Yesterday was such a bad day for me both physically and emotionally, My legs were in extreme pain and i found that i couldn't walk at all , normally i can at least manage a few steps . We are moving house and i just felt like i was drowning in the middle of everything , My husband and my daughter were working away so hard and all i could do was sit there watching , i felt as if i had no control of what was happening around me and i was very upset . I can't explain why the stress is getting to me so badly for i am so looking forward to moving to our new flat , i guess its just the situation that i am in that i can't handle.
I also got scared yesterday , my symptoms are so bad just now, the acupuncture just isn't helping any more, and i am thinking and wondering how bad can this get ?????? My husband thinks that maybe its just stress of the move and my symptoms will settle once we move , i hope so for i can't stand this pain and weakness . My stubbornness and my will to fight is all that keeps me going , but even that is fading ....... :-(
Kira x
I also got scared yesterday , my symptoms are so bad just now, the acupuncture just isn't helping any more, and i am thinking and wondering how bad can this get ?????? My husband thinks that maybe its just stress of the move and my symptoms will settle once we move , i hope so for i can't stand this pain and weakness . My stubbornness and my will to fight is all that keeps me going , but even that is fading ....... :-(
Kira x
Friday 16 November 2012
Love
My
Destiny in your eyes
I looked into your eyes and it was as if I had
stepped into a dream
I was surrounded by your warmness, and I knew I
was safe
My destiny was written in your eyes
I will never forget the first time you held me
so close
I knew how your arms felt even before that
moment
And as you held me tenderly,
I knew I had come to a place I could belong
I had thought of this moment so many times in
my imagination
Yet, the emotion I felt in that moment in time,
I can never describe
I knew that I loved you before we even met,
And that in this moment my heart already
belonged to you
If this was just a dream then please let me
never wake up
Let me stay safe within your heart sleeping,
Held in love
For to wake up and find you are not mine would
be too much
I could never bare the pain of this loss
And my heart would break into a thousand pieces
at my feet.
Love i s so many different thing to so many people , but to me love is completeness, love is knowing that nothing will ever change the way that you feel , and love to me is finding my soul mate
I dedicate this poem to my husband Colin x
Thursday 15 November 2012
Mobility
Most days my mobility is slow and hindered by extreme pain in my legs , this is like electric shocks shooting through my muscles and also causes extreme tiredness and weakness. Also because of my condition of Fibromyalgia i get stiffness in my joints, my hips; and legs. Weather conditions affect my symptoms too, and it seems i have no escape from this ongoing condition.
I am in the process of moving to a disability flat , much better than the house i live in at the moment, as i am finding climbing stairs increasingly difficult , i need to use a high seat for the toilet ( which is upstairs) I cannot bathe or shower independently , needing assistance and having to use a bath lift . So as you can imagine the prospect of moving to a flat is very appealing, everything on the one level, and also a wet room which gives me walk in access to a shower , pure bliss that will give me a little independence back and a much better quality of life hopefully.
Moving is such a stressful event normally but for me i am finding i am absolutely tired out and very emotionally drained. Its difficult for me not to try to help my husband , he is having to do so much on his own as well as look after me, I find this so frustrating .
It also looks like i am now needing to use a zimmer for moving about indoors, I have until recently managed to walk using furniture as a support , but now i am so unsteady at times there is a risk i could fall . I'm waiting to be assessed by my occupational therapist .
I know i need this support but its killing me to come to terms with it, We all recognise a zimmer frame with the elderly , i'm not anywhere near this age group, i'm a very young 'late fifty' i have a young outlook and i am not ready to be classed elderly ... How can i ever cope with this tag
So much emotional things to deal with , I wonder what lays ahead for me , will i become so disabled that i will become old before my time. How will this affect my marriage , ..... Why me :-(
Kira x
I am in the process of moving to a disability flat , much better than the house i live in at the moment, as i am finding climbing stairs increasingly difficult , i need to use a high seat for the toilet ( which is upstairs) I cannot bathe or shower independently , needing assistance and having to use a bath lift . So as you can imagine the prospect of moving to a flat is very appealing, everything on the one level, and also a wet room which gives me walk in access to a shower , pure bliss that will give me a little independence back and a much better quality of life hopefully.
Moving is such a stressful event normally but for me i am finding i am absolutely tired out and very emotionally drained. Its difficult for me not to try to help my husband , he is having to do so much on his own as well as look after me, I find this so frustrating .
It also looks like i am now needing to use a zimmer for moving about indoors, I have until recently managed to walk using furniture as a support , but now i am so unsteady at times there is a risk i could fall . I'm waiting to be assessed by my occupational therapist .
I know i need this support but its killing me to come to terms with it, We all recognise a zimmer frame with the elderly , i'm not anywhere near this age group, i'm a very young 'late fifty' i have a young outlook and i am not ready to be classed elderly ... How can i ever cope with this tag
So much emotional things to deal with , I wonder what lays ahead for me , will i become so disabled that i will become old before my time. How will this affect my marriage , ..... Why me :-(
Kira x
Tuesday 13 November 2012
Acupuncture
Acupuncture or not ???
Does it work ???? will it help ???? what should i do ?????
After months of agony and saying to my doctor i wanted to be referred to the pain clinic , my husband was told by a friend that i should see a different doctor, which i did.
I couldn't believe the difference, i was actually being listened to and for the first time in a long time , i actually felt like a human being with feelings and choices , and that i counted . The doctor made a referral for me while we actually sat there in his surgery.
Unfortunately it took a few months for an appointment to come up , but i was finally seen by the doctor who went over my symptoms and other details , she recommended acupuncture but also counselling therapy as a way to help me manage my pain emotionally , as yet i'm waiting for my therapy appointment , i'm very unsure about it, but i will try it .
Acupuncture for me was and still is something that works really well, it takes a few days to kick in and lasts at the moment only a few days , but to have more energy and to be almost pain free is worth all the discomfort and pain of the treatment. At the moment i get seen every 2 weeks, but hopefully i will eventually be able to go longer between treatments.
I find some needles extremely painful and others i am not aware of them. This is not to say everyone would find the treatment painful, but i would recommend if it work then keep going with it regardless.
If i can do it anyone can !!!!!!!!!!!!!!!!!!!!!!!!!
Acupuncture can make you feel extremely tired or maybe just relaxed and slightly sleepy, it can also make you feel nauseous , but not everyone may have these symptoms.
I would also recommend that you push to be seen at a pain clinic , i wish i had done so a long time ago rather than suffer .
Kira x
Does it work ???? will it help ???? what should i do ?????
After months of agony and saying to my doctor i wanted to be referred to the pain clinic , my husband was told by a friend that i should see a different doctor, which i did.
I couldn't believe the difference, i was actually being listened to and for the first time in a long time , i actually felt like a human being with feelings and choices , and that i counted . The doctor made a referral for me while we actually sat there in his surgery.
Unfortunately it took a few months for an appointment to come up , but i was finally seen by the doctor who went over my symptoms and other details , she recommended acupuncture but also counselling therapy as a way to help me manage my pain emotionally , as yet i'm waiting for my therapy appointment , i'm very unsure about it, but i will try it .
Acupuncture for me was and still is something that works really well, it takes a few days to kick in and lasts at the moment only a few days , but to have more energy and to be almost pain free is worth all the discomfort and pain of the treatment. At the moment i get seen every 2 weeks, but hopefully i will eventually be able to go longer between treatments.
I find some needles extremely painful and others i am not aware of them. This is not to say everyone would find the treatment painful, but i would recommend if it work then keep going with it regardless.
If i can do it anyone can !!!!!!!!!!!!!!!!!!!!!!!!!
Acupuncture can make you feel extremely tired or maybe just relaxed and slightly sleepy, it can also make you feel nauseous , but not everyone may have these symptoms.
I would also recommend that you push to be seen at a pain clinic , i wish i had done so a long time ago rather than suffer .
Kira x
Monday 12 November 2012
Strength Of A Woman
She smiles to the world but weeps into the night
She’s a shoulder to lean on, a confidant
A friend with a shoulder to lean on
She’s a nurse and a mother, a wife and a friend
With the magic to mend sore knees
Her tenderness and love are priority to those she cares
about
Often forgetting her own needs
She manages to smile even when her heart is breaking
Yet, she hurts like everyone does
She’s there as a listener and a comforter
Even though she feels loneliness too
No-one can see the tears she weeps
No-one can see the hurt inside
She puts a sticking plaster over her heart
And she.......
Smiles to the world and weeps into the night
That’s the strength of a woman
We all know some-one like this , someone who cares about others and who puts there feelings last every time, I dedicated this to my dear friend Sue .
Misty Coloured Dreams
A rainbow with colours so beautiful shines across the
skies
Remembering wishes, of fairy tales told and pots of gold
Of dreams to come true and hearts to mend
We walked through endless times of tears
Of broken hearts and life time trials...
We held on so tight and through it all-
So many years passed us by; and yet the child lives on
within us
And,
Misty coloured dreams still live on in our hearts
One day maybe we will find that pot of gold where our
dreams finally come true, sheltered by the rainbow
What happened to the innocence we carried in our hearts as a child, where we believed in faerie tales and dreams all came true, for our imagination could take us any place and win any battle. The child in me never left , she only sleeps and now and then she surfaces needing a hug , needing reassurance that everything will be ok .
I'm sooooooooooooooooooo tired today, medication tiredness mingles with the lethargy of my condition. My limbs feel wooden and heavy as does my heart. I'm sick of being ill, i'm sick of having to face each new day with the same old battles . I want to be well, i sooooooooooooooooooooooo want to be Kira again, the happy go lucky ; slightly crazy woman who could chatter for Scotland and loved people . I am now this shell of who i was, a memory of someone i once knew , and my fight goes on without no end.
I should be happy that at least i am up out of bed , for there was a time i couldn't get up and i just slept 24/7 . I should be happy that i can sit here and write my thoughts in this blog , but of course i'm not for, i want so much more for myself . My concentration is so limited at times, pain runs through my fingers and limbs, that even writing is often a battle . A battle that i won't give in to , but a battle that always wins anyway .
Today is not a good day , but its my own personal battle and tomorrow is a new day .
Kira x
Sunday 11 November 2012
Her Silent Heart
In the silence she sits alone with her thoughts
How did she get to this place?
When did her smile die?
Her vulnerable heart cries out with a sense of
hopelessness
Hopelessness to change what is now
She is helpless to make that important leap of faith
And still the fight goes on
Her body is weakened by illness
Her courage to fight this ongoing daily fight -is dying
Her heart lies bleeding at her feet
Crystal rears run down her face
Her dark eyes so sad now
Her glow has gone; her rapture no more
She sits in the silence, embraced by her pain
Emptiness surrounds her like a comfort blanket
Her nakedness is there for all to see-
Vulnerable
This beautiful woman trapped in a snow globe
And still , her silent heart weeps .
There are times when I feel so helpless, times I feel so guilty for I have no control over my emotions , my body dictates how I will feel and sometimes I just feel like my smile has died, and i am taking all those who i love, all those dear to me , I am taking them with me in this downward whirl of emotions .
My pain was so much last night that I have had to increase my medication again , I guess it wasn't such a good idea to try to come off my Gabapentin for my body screamed in pain and i felt terrible coming off them .
On a positive note I have completed a medical survey regarding Fibromyalgia and i'm waiting on a kit being sent out to me to take to my doctor to complete a blood sample, the reasoning is to help in trials to help understand Fibromyalgia and its cause , and perhaps who knows maybe in the future find a cure .
NB. All the poetry I put on my blogs are copyrights of myself , if you like what you read , then go to AllPoetry.com and search for Kira Howie where you can read more of my stuff.
Wednesday 7 November 2012
Relationships
I'm so concious as time goes on how easily relationships with partners and spouses can change , it must be a terrible burden on our other halves for i know myself that i am a terrible patient and there are times i get so down and feel guilty for putting my husband through this with me.
Days of constantly moaning about being in pain, days of not getting dressed because i've no energy and my clothes actually hurt my skin . Days of just being so ill , and all the time our other halves have to put up with it, and at the same time live with their own feelings of helplessness and all the time just wishing they could take our pain away .
The other side of the coin - sacrifice of giving up work, or limiting a social life, caring for me 24/7 sitting at home with me and having no real support to help the carers in this kind of situation, while all the time watching the one they love hurt.
Slowly our partner goes from a husband /wife who possibly shared a active intimate sexual life together, now share limited sex for fear that they are going to cause us more pain, or going to the point of no sex at all. Gradually , they are no longer in the role of husband/wife/partner , its changed to the role of carer .
Family relationships change too, so many people out there who just don't understand our condition be it cfs/me or Fibromyalgia , or both . I know that my family don't really understand, my daughter thinks or used to think that if i just got out more i would feel better , she was under the opinion that if i had a good sleep i would be ok. I don't know how many times i tried to explain to her that when i slept i still woke up in a state of exhaustion . I even directed her to a fact sheet but it still didn't help.
However, recently she visited and the change in her was amazing, its like for the first time she really saw me as i am now and it shocked her . She now txts me everyday and visits when she can . My son is a different kettle of fish, he cares but his life is caught up with his work and his wife. I guess sons are different , when they get married we lose them to a certain extent .
Being realistic, I personally think that the only person who really knows how we are suffering is ourelves and the person who shares our life , they are the nearest to understanding our pain and our struggles , and that in my opinion is a terrible burden for them . Life can be so cruel sometimes can't it
.Its so sad that many relationships break down because of things like this and how eventually partners can't take it any more , its so sad that they had to live with it in the first place , but as my husband says ' i chose to be with you - i love you, love is such a strong thing and i feel blessed to be loved and have a husband like Colin by my side . I know that i will never be able to tell him just how blessed i feel, and i admire him so much for what he does for me without complaining. Yet he has to put up with so much from me .
I hope that this blog will help anyone who reads it , simply to know that they are not suffering alone and there are many of us out there going through the same thing , difficult relationships; money worries; feelings of guilt; unhappiness and pain; loneliness; we share the feelings of loss and insecurity which can manifest in many different ways .
My only advice i can give is don't let hurts build up, don't build walls, talk to your partners and family/friends until you cannot talk anymore , for they don't know what we are feeling inside our thoughts and we can't read their thoughts either. Seek financial advice for there are benefits we are entitled to that we are unaware of so seek advice and help . Don't be alone with your worries
Kira x
Days of constantly moaning about being in pain, days of not getting dressed because i've no energy and my clothes actually hurt my skin . Days of just being so ill , and all the time our other halves have to put up with it, and at the same time live with their own feelings of helplessness and all the time just wishing they could take our pain away .
The other side of the coin - sacrifice of giving up work, or limiting a social life, caring for me 24/7 sitting at home with me and having no real support to help the carers in this kind of situation, while all the time watching the one they love hurt.
Slowly our partner goes from a husband /wife who possibly shared a active intimate sexual life together, now share limited sex for fear that they are going to cause us more pain, or going to the point of no sex at all. Gradually , they are no longer in the role of husband/wife/partner , its changed to the role of carer .
Family relationships change too, so many people out there who just don't understand our condition be it cfs/me or Fibromyalgia , or both . I know that my family don't really understand, my daughter thinks or used to think that if i just got out more i would feel better , she was under the opinion that if i had a good sleep i would be ok. I don't know how many times i tried to explain to her that when i slept i still woke up in a state of exhaustion . I even directed her to a fact sheet but it still didn't help.
However, recently she visited and the change in her was amazing, its like for the first time she really saw me as i am now and it shocked her . She now txts me everyday and visits when she can . My son is a different kettle of fish, he cares but his life is caught up with his work and his wife. I guess sons are different , when they get married we lose them to a certain extent .
Being realistic, I personally think that the only person who really knows how we are suffering is ourelves and the person who shares our life , they are the nearest to understanding our pain and our struggles , and that in my opinion is a terrible burden for them . Life can be so cruel sometimes can't it
.Its so sad that many relationships break down because of things like this and how eventually partners can't take it any more , its so sad that they had to live with it in the first place , but as my husband says ' i chose to be with you - i love you, love is such a strong thing and i feel blessed to be loved and have a husband like Colin by my side . I know that i will never be able to tell him just how blessed i feel, and i admire him so much for what he does for me without complaining. Yet he has to put up with so much from me .
I hope that this blog will help anyone who reads it , simply to know that they are not suffering alone and there are many of us out there going through the same thing , difficult relationships; money worries; feelings of guilt; unhappiness and pain; loneliness; we share the feelings of loss and insecurity which can manifest in many different ways .
My only advice i can give is don't let hurts build up, don't build walls, talk to your partners and family/friends until you cannot talk anymore , for they don't know what we are feeling inside our thoughts and we can't read their thoughts either. Seek financial advice for there are benefits we are entitled to that we are unaware of so seek advice and help . Don't be alone with your worries
Kira x
memory loss
It seems i have lost control in many areas of my life too for example, I cannot be trusted to take my own medication, I suffer from 'brain fog' I forget things so easily and have taken my medication twice with bad side effects so Colin is now having to deal with all my medication. I also suffer from 'slurred words' and getting my words mixed up when talking, saying words that just don't make sense regarding the the topic or sentence. This is very upsetting for me , but as time goes by we just try to make light of it . I am told that these symptoms are quite normal for Fibromyalgia sufferers.
I have lost my ability to concentrate , bright lights hurt my eyes, and i can't tolerate loud noise. I find it difficult to be around people , i take panic attacks and crowds make me feel trapped and frightened. I used to be such a people person , I loved people, i loved company, now i live a solitude life with Colin my only company
I miss girl talk and have talked with Colin about maybe getting a befriender, but its only talk , i haven't done anything about it yet, truth being i am lost in my own world .
I talk daily via txt or email to Sue , she lives in Bristol , we met through Action for ME . We have become such close friends, I never had a sister , she is the nearest thing i now have to a sister and i bless the day we found each other . We bring to each other a calm and deep friendship and we chat away as if we have known each other for years :-)
My reasoning behind this is to let others know if they suffer any of the same symptoms then try not to let them control your life , its so easy to get trapped in a whirlwind of emotions . Remember that many of these symptoms are normal . Also Action for ME could be a good support group for you to look into and find new friends and company with other people who experience similar symptoms as you .
Kira x
I have lost my ability to concentrate , bright lights hurt my eyes, and i can't tolerate loud noise. I find it difficult to be around people , i take panic attacks and crowds make me feel trapped and frightened. I used to be such a people person , I loved people, i loved company, now i live a solitude life with Colin my only company
I miss girl talk and have talked with Colin about maybe getting a befriender, but its only talk , i haven't done anything about it yet, truth being i am lost in my own world .
I talk daily via txt or email to Sue , she lives in Bristol , we met through Action for ME . We have become such close friends, I never had a sister , she is the nearest thing i now have to a sister and i bless the day we found each other . We bring to each other a calm and deep friendship and we chat away as if we have known each other for years :-)
My reasoning behind this is to let others know if they suffer any of the same symptoms then try not to let them control your life , its so easy to get trapped in a whirlwind of emotions . Remember that many of these symptoms are normal . Also Action for ME could be a good support group for you to look into and find new friends and company with other people who experience similar symptoms as you .
Kira x
Tuesday 6 November 2012
medication for Fibromyalgia
Today 6/11/12
I talked to my consultant at the hospital today about my pain relief, I was attending my acupuncture treatment and stated to her that my painkiller were not helping and hadn't been for a while, I'm on Gabapentin 300mg 2x3 times daily( =600mg each time) . My husband has done alot of reading up and has talked to my GP before about a painkiller used to treat Fibromyalgia which is called Pregabalin, but my doctor just said that one painkiller is as good as another and they tend to just give one or the other.
Anyway my hospital consultant at the pain clinic has informed us that Pregabalin isn't really recognised in the UK and that its more researched and given in USA ,so doctors in the UK tend to give Gabapentin, even although Pregabalin is the only medication that states specifically for use of sufferers of Fibromyalgia
She has suggested that i start to gradually reduce my present painkillers then talk to my GP about being started on Pregabalin when i see him next week. So i have today began to reduce my Gabapentin. I plan to do this by reducing by one tablet every second day . I'm a little wary of the side effects that i may get but i feel also that its pointless taken medication that isn't helping me , especially such high doses .
I wanted to note this entry in my blog for anyone else who may also be on Gabapentin and find they are not working for them . I'll update this entry at the end of the week regarding any side effects i may or may not have .
Kira x
UPDATE DAY 1
I decided to record on a daily basis instead of at the end of the week . So day one I can't get an appointment to see my doctor for 2 weeks so will reduce my medication every 3rd day , forgot to mention that my husband looks after that side of things for me as i forget if i have taken my tabs and have on occasional
taken them twice with really bad effects .
So day one i am taking 5 tabs today, woke up feeling foggy in my head and a tight band like feeling, my body also feels very sensitive , getting sharp pains in my arms and legs and feelings like a tight elastic band throughout. This could be psychological but will not disregard as 'real' .
Update day 2
I feel good today , much better than yesterday . Was planning to go out for a little while but haven't as I can't face it . I've not been out in such a long time except for my hospital visits or to the nurse at my local surgery . Plan to reduce my tabs to 4 tomorrow .
UPDATE day 4
Pain all over , feeling really ill, nauseous and faint. I need to upt my medication again and get back to the level i was at before I decided to try to come off Gabapentin .
I talked to my consultant at the hospital today about my pain relief, I was attending my acupuncture treatment and stated to her that my painkiller were not helping and hadn't been for a while, I'm on Gabapentin 300mg 2x3 times daily( =600mg each time) . My husband has done alot of reading up and has talked to my GP before about a painkiller used to treat Fibromyalgia which is called Pregabalin, but my doctor just said that one painkiller is as good as another and they tend to just give one or the other.
Anyway my hospital consultant at the pain clinic has informed us that Pregabalin isn't really recognised in the UK and that its more researched and given in USA ,so doctors in the UK tend to give Gabapentin, even although Pregabalin is the only medication that states specifically for use of sufferers of Fibromyalgia
She has suggested that i start to gradually reduce my present painkillers then talk to my GP about being started on Pregabalin when i see him next week. So i have today began to reduce my Gabapentin. I plan to do this by reducing by one tablet every second day . I'm a little wary of the side effects that i may get but i feel also that its pointless taken medication that isn't helping me , especially such high doses .
I wanted to note this entry in my blog for anyone else who may also be on Gabapentin and find they are not working for them . I'll update this entry at the end of the week regarding any side effects i may or may not have .
Kira x
UPDATE DAY 1
I decided to record on a daily basis instead of at the end of the week . So day one I can't get an appointment to see my doctor for 2 weeks so will reduce my medication every 3rd day , forgot to mention that my husband looks after that side of things for me as i forget if i have taken my tabs and have on occasional
taken them twice with really bad effects .
So day one i am taking 5 tabs today, woke up feeling foggy in my head and a tight band like feeling, my body also feels very sensitive , getting sharp pains in my arms and legs and feelings like a tight elastic band throughout. This could be psychological but will not disregard as 'real' .
Update day 2
I feel good today , much better than yesterday . Was planning to go out for a little while but haven't as I can't face it . I've not been out in such a long time except for my hospital visits or to the nurse at my local surgery . Plan to reduce my tabs to 4 tomorrow .
UPDATE day 4
Pain all over , feeling really ill, nauseous and faint. I need to upt my medication again and get back to the level i was at before I decided to try to come off Gabapentin .
Sunday 4 November 2012
The First Time ( A Journal)
I remember when I first got ill with cfs/me. I caught flu
which left me so weak that I was bedridden for 9 months. It was a hard battle as my mother was dying ,
my marriage was breaking up , and I felt I had no-one to turn to , yet somehow
I survived, it was a long long battle but I got there .
Slowly I managed to get back to a normal life, working and even managing to go to college and completing a diploma in counselling. That was 11years ago. My life moved on , I felt complete as a single woman , and independent , I loved my life and I embraced my solitude.
Then I met someone who turned my life upside down, helped me
regain my trust in people and showed me without even realizing it that I could
love deeply. Can you believe I proposed to him within 3 weeks, and within a
year we were married. For the first time, my life was complete and I thought I
couldn’t ever be happier.
Then last year I got ill again, a virus that just floored me,
and left me with major cfs/me and such intolerable pain that was taking over my
body. I was eventually diagnosed with Fibromyalgia, and in that moment I knew my
life would never be the same again.
Before this diagnosis, I convinced myself daily that I would
get well again, I would return to work; I would be the person I was before this
illness hit me. However, slowly it took every bit of me , I had to give up
work, I couldn’t drive anymore, I couldn’t dress myself, or feed myself without
becoming very weak and needing help, and
I couldn’t even brush my hair, or do the normal tasks like personal care
without needing help .
I felt lost with no place to turn, for I could do nothing to
stop this happening, and all the time the intense pain spread through my body
leaving me weak and unable to walk or do the things I did before I got ill . My
home became my prison, I couldn’t walk upstairs without such fatigue, and I had
to come downstairs on my bottom. I had to get a bath lift to allow me to shower with assistance, i also needed a high toilet seat and a commode. I thought what a life, this is just an
existence, and I wanted to die.
It seems i have lost control in many areas of my life too for example, I cannot be trusted to take my own medication, I suffer from 'brain fog' I forget things so easily and have taken my medication twice with bad side effects so Colin is now having to deal with all my medication. I also suffer from 'slurred words' and getting my words mixed up when talking, saying words that just don't make sense regarding the the topic or sentence. This is very upsetting for me , but as time goes by we just try to make light of it . I have lost my ability to concentrate , bright lights hurt my eyes, and i can't tolerate loud noise. I find it difficult to be around people , i take panic attacks and crowds make me feel trapped and frightened. I used to be such a people person , I loved people, i loved company, now i live a solitude life with Colin my only company, I miss girl talk and have talked with Colin about maybe getting a befriender, but its only talk , i haven't done anything about it yet, truth being i am lost in my own world .
It seems i have lost control in many areas of my life too for example, I cannot be trusted to take my own medication, I suffer from 'brain fog' I forget things so easily and have taken my medication twice with bad side effects so Colin is now having to deal with all my medication. I also suffer from 'slurred words' and getting my words mixed up when talking, saying words that just don't make sense regarding the the topic or sentence. This is very upsetting for me , but as time goes by we just try to make light of it . I have lost my ability to concentrate , bright lights hurt my eyes, and i can't tolerate loud noise. I find it difficult to be around people , i take panic attacks and crowds make me feel trapped and frightened. I used to be such a people person , I loved people, i loved company, now i live a solitude life with Colin my only company, I miss girl talk and have talked with Colin about maybe getting a befriender, but its only talk , i haven't done anything about it yet, truth being i am lost in my own world .
The first time I accepted that I would have to use a
wheelchair, I realised that again my life would never be the same. I became so
depressed and saw myself as a failure. My new husband was now in the role of
‘carer’ I felt guilty and wallowed in my own sadness. I felt I had lost
everything. I became so aware that people now treated me differently, they
didn’t speak to me , they spoke to the person who was with me , for I was now a
non person in a wheelchair
I couldn’t go out unless my husband took me , I couldn’t wear
heels anymore, I was such a girlie girl before, loving make-up, loving heels,
and now ..... My husband unconsciously would wheel me away from heeled shoes
when we were in shops (or did he, I wondered if he was just trying to protect my feelings) I
couldn’t even shop anymore for i couldn’t reach up to see clothes I liked
hanging on pegs, I was frustrated, and now although I loved the shops, I became
sad and envious of people who could walk and do all the things I couldn’t do , simple things so many take for granted , and now I became obsessed with what I couldn’t do rather than what I could do.
I spent months suffering chronic pain, my muscles constantly
went into spasm, and i experienced such burning sensations and restless leg syndrome, these symptoms i
suffered just went on and on and on , I felt I had no-one to turn to, my doctor didn't seem to be of any help and the pain killers i was taking would have
knocked out a horse , unfortunately they did nothing for me . On the
recommendation of some-one I went to see a different doctor who immediately
arranged for me to be seen at the pain clinic, it seemed that I waited such a
long time to finally be seen but eventually I felt some-one cared and
understood my pain and how it was so soul-destroying, finally someone listened to
me , and i felt as if i counted .
I now get acupuncture
on a regular basis, I can’t believe the relief it gives me from my pain, the
energy it gives me, and the fact that I can now sleep peacefully all night.
Unfortunately acupuncture has its down side, I find it extremely painful. So
many tears..
The effects take at least 3 days to kick in and only last a
few days...... But I hang on to the good feelings.
I try to remember the things I can do, and be ever thankful for the love and support I get from Colin my husband, Sue my dearest friend, and the doctor and nurses, and community care team who take care of me.
I still have to use a wheelchair when outside for my ability to walk any distance is hindered by intense pain. But now I accept that i need to use a wheelchair.
I still have my down days, I still feel very sad at times, I still have days when all i can do is sleep and i feel so ill. Days i can't get out of bed, days i can't get dressed, days when i am up for less than 3 hours then i need to go back to bed to sleep for the rest of the day, and I still wonder what my life will be in years to come, but I know that as long as I am loved I can get through this.
I have written this journal and tried to be honest in my
feelings, so that anyone who reads this can connect honestly to their feelings
too, and know that they are not alone, know that others share their feelings
and understand.
If anything, my illness has taught me that there is a positive reason behind everything and try to seek out the positive whenever I can . I feel that through my suffering and experiences I can honestly empathise with others, and let them know that I
truly understand,
I want them to know that they are not alone, and that I care.
I have been told that I am brave, I'm not brave, i'm just me and i wonder constantly where i find this inner strength to help me go on .
I want them to know that they are not alone, and that I care.
I have been told that I am brave, I'm not brave, i'm just me and i wonder constantly where i find this inner strength to help me go on .
Kira x
Thoughts
Across
the emptiness of time
Across the miles of time and space
I feel your touch reach out to me
I feel your arms hold me close
Your lips gently kiss my eyes
Across the emptiness of time
Where hearts cry out in hunger
Where arms lay empty
And, souls are lost
My comfort is you,
And, knowing that I am not alone
If, I close my eyes....
I can hear your voice in the wind
And, I am found.
I wrote this at a time when i was feeling very lonely and sad, its strange how we can be in a room full of people and yet still feel so very alone . We think that people can see our thoughts, know our feelings , but unless we open up to them, tell them honestly what we are feeling then how will they know.
Kira x
Friday 2 November 2012
This Mask
Don't we all wear a mask, we hide from those we love, our innermost feelings , simply because we don't want them to worry .
We hide from our family and friends exactly how much emotional pain we are in , is this through fear of being seen as a failure .
We hide from ourselves , at times when we cannot face the world , so we wear a mask , and we cover up and hide from ourselves .
and yet ...... deep in our heart all we want is someone to care enough to :-
Look behind the mask
I wear
Behind my eyes
See what secrets I
carry within
For my pain is no
more
Or
No less than yours
It’s only different
We meet people for a reason 2/11/12
Namaste
My
heart reaches to your heart
My
soul sees the love in your soul
I
wish you love
I
wish you peace
Oneness
We meet people in the strangest of situations, some are like ships that pass in the night, others touch our soul and leave their fingerprints on our heart .
I joined Action for M.E. a while back . I am no longer there, but , I thought at the time it would be good for me , but infact it was not really something i was ready for , i don't know what my expectations were but i do know that i was disappointed and felt let down by the site, maybe i was hoping for miracles, maybe i was looking for a magical cure , something to take my pain and fatigue away . I didn't find it .
What i did find though , was a sincere friendship with 5 people on there , Sue; Susan; Helen; Bill; and Sarah ,with whom i still keep in touch with via email or txt.
I especially formed a very special bond and friendship with Sue, she is such a caring person , she suffers from cfs/me but she always has a way of helping others , supporting and being positive in her ways that helps when everything else seems so bleak Sue is the sister i never had, and my dearest friend .
I especially formed a very special bond and friendship with Sue, she is such a caring person , she suffers from cfs/me but she always has a way of helping others , supporting and being positive in her ways that helps when everything else seems so bleak Sue is the sister i never had, and my dearest friend .
We meet people for a reason , and i believe in earth angels x
Namaste is such a beautiful word meaning one-some ;love ; and acceptance . I wrote my own version of Namaste at the top of the page as an intro . I end my blog with a wish for Namaste to all who read this x
Thursday 1 November 2012
My name is Kiara , I have cfs/me & Fibromyalgia
hi , my name is Kiara , i suffer from cfs/me & fibromyalgia.
My hopes and dreams for tomorrow, whenever my tomorrow comes, -
I want the simplest of things and my heart has written
those down; wrapped them in a red ribbon and placed them in a safe place til
the time is right.
My wish for tomorrow is to smile even when I hurt
To be someone that others can look up to
To be an inspiration and a way forward for others who may
have felt lonely; sad; empty; unloved; helpless
I want to learn from my weakness and my illness, so when
I am sad , when I feel I cannot go on , I will look into my heart, unwrap the
red ribbon and remind myself of my
hopes and dreams , telling myself that dreams do come true , it maybe just take
a little longer for me .
I have been sad too long, now is the time to shed my
sadness, be thankful for what I have, and try my best to move forward. Little
steps at a time J
Kiara
x
I decided to do this blog so that others who also suffer from cfs/me or fibromyalgia can not only share their struggles but can also share their inspirations and hopes .
Life is a struggle , there are days i feel my days are endless , just running into one another with no end, but when the rare days are good then i am reminded how great it is to be alive, to be loved and to have such dear friends and family .
I also want to dedicate this my first blog to my husband Colin , for without his love, dedication and support , i just don't know where i would be .
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