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

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

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

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

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

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

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

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.

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

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

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 .

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 .

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 .

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

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 . 

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

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 .