The Value Of Pain Project

Yesterdays post was written for ' The Value Of Pain Project' I would encourage anyone visiting my blog to also visit this worthy project , you can leave your own story if you want or even just browse . I feel that support in any form is important, not only for self esteem issues but also for updated information regarding chronic pain issues.

Today is not a good day for me for many reasons that i won't go into. I just wanted to write something to promote this worthy project and i hope that it helps someone out there .

Kira x

Me and my pain

I have written here an open and honest blog about my feelings and how pain affects me , i hope this helps others just by knowing or relating to similar symptoms , knowing you aren't alone helps a little. I initially wrote this for  The Value Of Suffering Project . This is Kira's Story . You can find the link here: http://www.valueofsuffering.co.uk/category/your-stories/

.My name is Kiara, I suffer from severe all body fibromyalgia.  This has changed my life drastically as I've gone from a healthy outgoing, independent woman to someone who is now disabled and relies totally on other people for my every day care.

Physically at my worst I am unable to do anything for myself. I cannot take care of my everyday personal care and it can take up to 40 minutes for my husband to wash and dress me. Realistically I spend my day in my pyjamas now as it is much easier and more comfortable for me. There are times when my husband has to feed me. I tire very easily, some days spending all day in bed sleeping, or I spend my time having to go back to bed every few hours for a nap. Fatigue makes me feel so ill. I feel nauseous and sometimes faint. Even sitting can make me feel so bad that I have to lie down. My husband has gone from the role of husband to carer and this hurts me so much as I need my husband and I miss what we had. I am now an invalid though and I mourn the me that was.

My sleep pattern is variable. I have to take over the counter sleeping tablets as my doctor won’t prescribe any for me. I find this strange as each time I've been admitted to hospital, I've been given them there. I also feel that GPs in general have little or no understanding of this condition.  There are nights when I am so sore and stiff that I cannot even turn in bed by myself, and more recently my husband has to help me out of bed too.

Socially I very rarely go out. Just getting ready to go out is taxing for me.  I also suffered panic attacks.  I hardly ever see anyone, so when I do, well, I panic.  I now use a wheelchair as I cannot walk far. I’ve become invisible; I am a non person now.

Shopping.  I used to love clothes shopping but now I cannot even reach out to feel things as I cannot raise my hands above my head. This hurts more than physically as I used to do weight training at the gym. Also shop assistants seem to not see me and so talk to my husband instead. I don’t even deal with money anymore.  I can’t drive now. Even if my health would let me, I've lost my confidence. I used to love wearing my heels, but I cannot wear them anymore.

Emotionally I feel at times that my life is not worth anything. The pain I suffer is chronic. It affects all my body. My legs burn and this spreads to my skin and hits areas all over, even the soles of my feet. My jaws hurt, stiffens up as well as my fingers. The pain can start as something general and within an hour can become so severe that I weep and want to die. My joints stiffen up and I have become an old lady before my time. I suffer brain fog because of medications.  I forget things and I am a danger to myself regarding my medication so my husband has to make sure I get my meds when I should. He has taken complete control of this aspect of my care too. My muscles spasm severely and regularly.  Once I scolded myself with very hot tea so now I have to drink from what is an adult equivalent to a baby cup.

Fibromyalgia is soul destroying. I have been admitted to hospital on a number of occasions when my condition worsened and I required my medication to be reassessed.  I had a course of acupuncture which in itself was agony for me. It did help a little at first but soon I couldn’t tolerate the added pain and it wasn't helping me anyway.

My neck cracks. I feel a pressure build up then it releases with the crack. This only started happening after I was diagnosed with fibromyalgia.  I have been passed from doctor to doctor who have all said that they can’t do anything for me except pain management and life style management. Medication-wise, the next step would be morphine to control my pain. I refuse to become a medical junkie so I struggle on and try to remain positive. 

My life is a big ball of agony and feeling of helpless to change how I am. I don’t really see my future improving in any way.

I write this blog - an ongoing journal to try and help myself come to terms with my pain and my feelings. I also want to help other people who suffer from fibromyalgia or other chronic conditions. I do this to try to stay positive and strong but the truth is I am not brave, I am not strong and I cry inside every day of my life “Why me”? My pain has also affected so many others, my family, my friends, and my husband. He feels helpless and he has no choice but to watch me suffer while he can do nothing to help me. He can’t even hold me close for this hurts my bones too.

Imagine having the worse pain you have experienced and multiply it by 100, then imagine having to bear this 24/7 every day of your life - this is my life of pain. I would do anything to live even just one day pain free, just to be normal again for a little while.

Not every fibromyalgia sufferer has the same amount of pain as i do , not all sufferers will end up in a wheelchair . This is just my account of 'My Pain' 

Kiara x

A new start

January 2014 a new start for everyone, so many new resolutions for everyone , new hopes; new wishes; new goals

I read my first ever blog today it was so full of hope and such promises and here i am a year on with still the same hopes and no further forward.

I have met up with old friends via mail/txt and now look forward to meeting Val in person , such a big thing for me as i don't get out much and i crave female company needless to say i am looking forward to our coffee date and see at least one positive for me this new year ; building on friendships . Val has recently been diagnosed with fibromyalgia , maybe i can help her in some way and maybe she can help me by just giving her time and company

so i look forward .......


Kiara x

2014

To all my friends i wish you a happy and healthy new year , let 2014 be a good one in many ways 

Hugs 

Kiara x

When....

Sleepless nights  filled with pain and tired day that seems never ending


My pain has now spread to my jaws,'I'm experiencing stiffness and terrible pain that even affects me trying to talk . How bad is this going to get, when will it end.

I live in hope that one day i will wake up and be better but i know there is no cure and 'I'm just living in a fools paradise. I joke to Colin that this could be every husbands dream for his wife to find herself unable to speak lolgiggle but the reality of this takes away the funniness of this.

I can only sympathise with anyone else who is suffering the same symptoms, I didn't know it could get this bad and spread over such a wide area. I didn't even know about fibromyalgia until i was diagnosed. I have looked into this and it is more common than people realise, although symptoms are normally just in one area- just my luck isn't it.

I try to not feel sorry for myself but there are times when i just wish i could go to sleep and not wake up and i just can't imagine the rest of my life being like this. So many out there suffering illness and chronic pain, so much to tolerate .

Life can be so cruel.

Kiara x

its not about ......

Its not about how many people read my blog; its not even about how many people comment ;

I write my blog to help myself work through my own emotions and feelings. I also write to help other people recognise symptoms and accept their emotions and feelings , I think that knowing there are others who also suffer,  so its easier to accept that we are not alone even if we feel that we are.  So many times i feel like i am a non-person and invisible as i sit in my wheelchair, me who was an active independent woman, me who dealt with the public and worked in the caring services, its such a turn around and even now after nearly three years still feels at times so hard to accept.
 Disability has such a negative effect people because its soul destroying and also we feel so alone with our illness. We feel that nobody understands and our family feel helpless to understand what is going on with our body and come to terms with the fact that their loved ones are suffering , they/we have no focus on what the future holds and this chronic pain is at its worse intolerable .

So i write as a comfort to myself and others out there who suffer like i do.

At the moment I'm not good, i am very lethargic and i am not getting quality sleep because of the pain . Its a cycle of symptoms we never get used to . Noise and bright lights also effect me , so many different things can influence my day and still i can do nothing to help myself , i just have to accept that this is the way it is.

I have recently heard that some-one i know has been diagnosed with fibromyalgia in her arm , Val my thoughts are with you and I'm sending you healing thoughts.
We all need a hug sometimes, even when we try to be brave ......

hugs Kira x

Heat

I've recently started using sunbeds, Colin has to help me on and practically lift me off again but, the benefits i feel are just so good. The heat goes into my bones and helps relax my muscles this  feels soooooooooooooooo good :-) I only go on for 4-6 minutes twice a week i am starting to get some colour which is also boosting my moral .

Please don't go rushing out to use sunbeds as you must be aware at the risks of skin cancer however its working for me and both myself and Colin check my skin regularly for any signs of changes.

I've been feeling so ill and very lethargic and tired lately , feeling severe pains shooting through my legs and arms . And so the cycle goes on once more :-(

Colin is holding a voluntary candle medication at Merchant City Yoga in Glasgow on 19th Dec so anyone interested please come along. I will need to be lifted up in my wheelchair as there are two small flights of stairs to climb but its worth it to be able to attend. Anyone who wants to come along must be aware of the steps if you are disabled and find climbing stairs difficult. If you want to attend though you booking is through The Merchant City Yoga website .

No more news at the moment , i don't want to go on about my pain as this is an ongoing symptom of fibromyalgia and all sufferers will experience different levels of pain , but understand this issue with fellow sufferers.

Hope you all out there are well or as well as can be expected

Namaste

Kiara x