The pain of loss

I didn't know it could hurt so much

We lost our little cat yesterday, His name was Alfie and he was two on the 1st January . He gave so much joy to us , this little cat who thought that he was a dog. He would fetch foam balls and kick them back to us or bring them over in his mouth. He was vocal and talked to us in ways that we just knew what he wanted. He loved Colin, infact he idolised him. Always wanting to cuddle in like a baby he would stretch out in Colins arms and look up to him with so much love, he would stretch his arm up as if to cuddle him. Colin is tall with those long legs that Alfie just loved, his favourite position to stretch along Colins legs and hang dog  :-)

When we'd been out he would greet us or Colin by tromping up the hall like some little wind up toy. Kismet loved him but would never let him know, he often bullied her but i'm sure she liked it :-)  She hasn't ate since yesterday and just lies around looking so sad. We don't know what to do to help her, she isn't a cuddly cat like Alfie was. She used to get him into so much trouble and lead him astray , i can just see him now sitting under the side table that was his gang hut, his safe place , he thought no-one could reach him from there. He had this way of facing up to things he was frightened of, in a way that said i'm wary but i'm also inquisitive to know what you are . He was our funny little boy.

The vet said he got a blood clot that went to his heart, this is often seen in older cats and is quite unusual for young ones. I can't quite take it in, he was our baby and the flat seems so empty without him, yet i can still feel his spirit, such a beautiful spirit.

Colin is heartbroken and i have no words , we can only hold each other and be each others handky.

Anyone who has lost a pet will understand how we feel i'm sure .

Alfie we miss you , we love you and you will forever be in our hearts . RIP xxx

Doctor assessment for my pain

I saw the doctor this morning regarding the worsening of my symptoms and pain. He has suggested that heat can help eg, baths; showers ; bathing pool such as hydrotherapy, or any other heat treatments that i may feel comfortable with.

I'm really low in mood as i'm finding things very difficult to cope with , he has increased my Venlafaxine as he says if he can get my mood up then i will be able to cope better and react better to my painkillers. He didn't discus in detail Sativex but did say that many medicines go under different names. Colin spoke to him about what he had found out about Sativex but it didn't go any further. The doctor did state that he wants us to make another appointment to see Dr Harrington at the hospital pain clinic to ask her to refer me to a pain occupational therapist. We updated him regarding our visit to see the Physiotherapist and i'm a little confused about seeing her and also seeing a pain occupational therapist in the event that visits and treatments may clash, but until we see her we won't know. So Colin has to phone to make an appointment, these unfortunately are always weeks/sometimes months to wait to be seen.

I think Colin is frustrated with me, and i understand his concerns , its difficult for us both . Relationships suffer so much when there is long-term illness and disability . We just need to try our best and hang in . This illness tries both of us and it hurts emotionally as well as physically . I'm sure that anyone in a relationship and suffering as i do will also relate to this.

I maybe go along to the Fibromyalgia support group in the Dundas Resource Centre in Grangemouth, meeting other people might help me so if i am okey on the day i will give it a try - wish me luck. I understand the importance of groups like those and i would recommend them even if its only for the social factor. Sounds good on paper but in reality much more difficult to acheive.

Hope everyone out there has had at least one thing that is positive to reflect on today.

Hugs Kira x

Physiotherapy

I was seen at Falkirk hospital , pain clinic, physiotherapy yesterday , a 50minute appointment that left me shattered.. I thought it would be a very different kind of appointment but she informed me that she works with people who suffer chronic long term pain and we talked about various ways we might tackle my problems. Slow but slow I've to see her again 5th March so perhaps i will have more of an update to share than today.

Tomorrow i see my doctor :-)

This morning so far i feel ok, not much pain that i can't deal with, although i had a restless night . I know that this could change with the blink of an eye but at the moment i am enjoying this little respite .

Have a good day

Hugs Kira x

Eating plans & healthy eating

I used to be so fit and i loved going to the gym , anyone who knew me would say that i was a gym bunny , how i miss those days.  Going to the gym, it was a hobby to me and i would be the first to say that if it was only that i had to go then i would never have stepped inside a gym.

 I am now 13st 8. 3/4lbs and i need to do something about my weight but i can't exercise so i now need to rely on diet/healthy eating plans. My downfall is chocolate , this is my comfort food . I've tried a few diets but soon lost interest . this is also something else that has changed in me, no longer do i have the determination to see things through . However i once used Tesco GI plan years ago when i stopped smoking and put on weight , this eating plan lets you eat pretty normally but it gives you options of low carb foods that fill you up for longer. It worked for me way back then, so i plan to try it again . My BMI index is 30 and i am in the danger zone for contracting  diabetes 2 . According to the BMI test i took i should be at a 25 range !!

I wonder how many people out there are like me , overweight and hating it . Well my thought for today is try Tesco's GI Eating plan , its reasonable priced and caters for everyone , even people like me who are disabled and cannot exercise. I also want to try to do some gentle yoga again , Colin will practice with me the only drawback is that i am often too fatigued to do it :-( I need to try harder . Even small changes can make such a difference .

Watch this space :-)
hugs Kira x

Through misty coloured dreams

There are times when i feel that this pain is like a fungus that overpowers my body, it invades my sleep and it controls my day, making me ever more dependant on pills to help me in some small way. Anyone who suffers chronic ongoing pain will possibly relate to what i express here.

Mornings are not a bright and shiny new day for me, they are times when i wish i could just go on sleeping for only then am i in a mist covered dream that protects me from the intense pain that greets me every morning. Some days are worse than others, some days the pain will cease by my lunchtime meds , other days my pain will go on like some never ending story , a record stuck in play , going over and over and over....

My eyes are more affected at the moment and an added symptom for me to contend with, things go blurry, lights hurt and i continue to feel like i am seeing the world through a cotton gauze.

Maybe tomorrow will be better for me

Kira x

Mobility & Pain Relief

Its a lovely day here in my little part of Scotland , but cold. I'm in alot of pain today , mostly in my arms getting lots of spasms too ,  i'm fighting going back to bed til this afternoon at least.

We have just booked a holiday in Torquay for a week in June so i'm really looking forward to it. Initially we planned to go abroad but i wasn't sure about flying as i've heard that it can increase pain because of the air pressure in the plane, also i worried incase i took ill abroad, ok we would have insurance but it concerned me just regarding the language barrier and my illness in general , so we opted for some place nearer home. Have never been to Torquay but it looks beautiful.

My hands are very swollen today :-( it makes it more difficult for me to type , also my concentration is waning, I normally ask Colin to read or type my mail for me when i feel like this . My arms feel like someone has a hold of the tendons and are playing then like the strings of a harp, making the nerves very sensitive and painful for me. I have an appointment to be seen at the Physiotherapy dept next week , i'm wondering what they can offer me because the last time i was seen a year or so ago i was told that they couldn't do anything as my level of pain was too high. I'm also wondering if this is just a routine thing . Not good if they knew how difficult it is for me to actually get there to see someone . I'm keeping my options open.

I've also got an appointment to see my doctor in two weeks to discuss my pain and assess my meds again. I am on alot of meds for pain and muscle relaxants, but what i take for pain just doesn't touch it and there are times i just can't cope. A friend has told me about Q10 as a painkiller , however Colin researched this and its said that half of the people studied felt it helped but just as many said that it didn't do anything for them . We will discuss this option along with some other stuff that Colin has researched eg, Satavex this is a spray form of cannabis medication that is primarily used for MS patients .  Considering the symptoms are similar between MS and cfs/me & fibromyalgia there is a chance that this could help. Anyone interested in this should also discuss this option with their doctor. The up side of taking this spray for pain is that other meds may be decreased so effectively decreasing side effects . Watch this space as i will write again after i have seen physio and my doctor.

Hope you all have a good day or as good can be expected .
Hugs Kira x

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