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
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