Holiday;Heat;Healing ....

I'm just back from our first holiday abroad since i got ill almost four years ago now , we went to Gran Canaria The Hotel Sandy Beach and i can't praise the staff highly enough , nothing was too much a problem for them .

 And the hotel .......

Beautiful, simply stunning

 And for wheelchair users.. ramp access , wider doors, the option of walk-in shower or bath ; accessible easy to use taps with heat control ; lifts ' I found my stay at the Sandy Beach so relaxing and good for both my emotional wellness and physical being .

The perfect holiday for me and my condition, it was hot , very hot and i was concerned at first about how i would cope with the heat , all in all i was fine although i had two days when i was pretty ill with a touch of heat stroke which was entirely my own fault for sunning too much in one day periods. The heat however was brilliant for my Fibromyalgia condition, my stiffness wasn't so bad and my pain was definitely less intense with only a few occasions when the pain was really bad,  I found that i had a much better tolerance level for sure and i put it down to the heat and the relaxed environment. 

The flight from Glasgow was 4.5hrs , I was concerned about the flight and scared that my pain would increase with the air pressure or seating that had me in the one position for too long , i can't even sit in the car for over 30mins or so before the pain gets to me. The flight was easy with no real problems for me except for the flight times that had us on a late flight out and a late flight back home which meant we didn't get into Glasgow until after 2am, i have been physically washed out since returning home, but i'm hoping for a better day tomorrow which will be my second full day since getting back . The flight itself went by fast, i even managed to doze off a few times :) the seating wasn't cramped and i will be happy to use Jet2 again for sure. so much so that we plan to go back next year.

 This time around we only went for one week as in many ways it was a trial and error situation. Also apart from myself i was worried about our cats, esp our 10month old kitten Keisha, she is so much a mummies cat that i was scared she would pine too much, and Kismet she's 3 , she is so timid and never been away from us since we got her as a kitten from the rescue centre in Fishcross ,  Nr Alloa . 

With this in mind we decided to use a local cat sitting service, 'Animals At Home, THEY WERE BRILLIANT!!! even Kismet took to Steven and that is definitely something :) 
Steven and Gavin took it in turns to visit twice a day to feed the cats , groom and spend time with them. They sent us regular email updates and pics, and they put our minds completely at rest to allow us to enjoy our holiday knowing the cats weren't stressed by being taken away from their own surroundings . We will definitely use them again and Highly Recommend them to anyone who is interested in Cat sitters at home, esp those who have never used such a service before. 

So home now, holiday over, but memories and friendships formed that will last a very long time. The whole experience has just been wonderful for me and broken that circle of 'should we go abroad? what if' .....However i cannot express enough that medical travel insurance is a Must :)

So to all my fellow sufferers i just want to say 'take that risk' have your holiday abroad, or even just go on that short break for the positives that will give you pleasure rather than displeasure are plentiful :)
 Gran Canaria The Sandy Beach Hotel 6/10/14

Today

So here am i recovering from yet another virus, it only lasted a few days thankfully but it did frighten me for i thought i wouldn't be fit enough to travel on Sat. Colin and i are setting off for a well earned holiday in Gran Canaria and its so important to have this rest for the both of us. 

The heat will do me good as Fibromyalgia responds well to heat. I am worried about the flight tho as i can't sit in the car for more than 20 minutes without intense pain, natural to worry i guess but hopefully the excitement will carry me through all my concerns. 

I find that since i got ill i am so very insecure and i worry over the least little thing , i worry intensely and i get paranoid over the least thing. Knowing all this doesn't really help for i have no control over any of those issues.

We managed to get help with me and my wheelchair for booking in and transport on to the aeroplane, and once at the other side we have a private taxi to take us to our hotel, then same for on our trip back home. I really can't praise Barrhead Travel enough for they have taken away the strain for Colin and put both our minds at rest. We are staying at The Sandy Beach Hotel in Gran Canaria it has great write ups from travelers guide and the hotel itself according to the brochure online, looks lovely. I can't wait to start my holiday :)

Well i have nothing more to say this blog, but for those travelling maybe not realizing that they can get help with wheelchair and transfers , maybe after reading this it will give them an insight to asking about these things in the future.

Take Care all
Love and Light
Kiara x

Now I Know

Now I Know what the doctors meant when they told me that all that can be done now is concentrate on life changes and pain management. 

Its taken me 3 and a bit years to finally accept my situation and go through the grieving process  for the lost person that was me and the loss of all my life's skills and hobbies. Things i loved doing; my independence; My future as i used to be....

Its strange how a calmness now resides over what once was, and how i just now go with each new day without question; without fighting to get back to who i was, i now accept who i am and i now look forward with hope.

My pain will always be there, and my weakness will always rule what i am able to achieve, but the me that is now looks at each new day with the hope and awareness that i am alive, i am truly loved, and i am content to feel grateful for those things with a thankful heart.

I know that there will be days when i will struggle, and there will be times when i feel low and so very alone with my pain , but i own it now . It is mine and mine alone and so i need to cope in my own way . 

I share this illness with so many people and my only wish is .... let them find peace and a way to come to terms with what is now 

Looking forward .......
Hugs xx

This Pain...

This pain that travels down my legs, all consuming , agonizing
This pain that shoots through my bones , electric shocks that never leave me
This weakness in my muscles , stops me from being ambulant , stops me from walking with dignity 
Spasms 
I cannot even control my fingers, and all the while this weakness takes over my body, I am so tired all the time, i have no energy 


This illness slowly takes all of me , hurting ; hurting; hurting....


There are times when it just gets too much for me to bear, i want to go to sleep , a peaceful sleep , and stay in slumber for ever more


Only then will my body be at rest; only then i will be free of everything that destroys me, my dignity; my life , for now i just exist , and sometimes love is just not enough .

Each day is the same, i have nothing to smile about, i have nothing to make me feel happy, I have nothing to look forward to for i cannot know what my day will bring, will i even be out of bed today ??...

Let me be at peace; let me rest ...

Please take this pain from me and give me back what you took ....Give me back my life !!!


Does this sound familiar to anyone??? Do you understand my agony, my anguish , Does this sound like you ??

You maybe feel so alone, but i am here too, i share everything you feel , i understand

I am Fibromyalgia ; I am me/cfs; I am all those invisible illnesses that you feel but no-one truly understands.


I am a coward 
I am only me, one person in a million sufferers; a speck in the universe , I am ONE .

Whoever reads this please just take one moment to walk in my shoes, try to imagine what it must feel like for me, then smile and thank your lucky stars that you are not me , you can return to your normal life , while i am still here.

Feeling lost tonight
Feeling sad
Feeling such mixed emotions .....

And, my body is still trapped in a fog

trapped in a web with no way out .

Friends !!! We all need them !!!!

Friends , the people who perhaps know us better than our close family does...
Friends who are so important to us, whom we confide in, whom we tell our secrets to, whom we indulge in silly laughter and fun times with, and who we share our deepest fears with..

Friends ....

So why is it that when tragedy or illness hits us like a brick and we then become a different person to whom we once were, why is it that slowly one by one our friends disappear from our lives :( 

Do they fear that they might catch the illness or is it they don't know how to cope with it , or is it too painful to see the people we care about, and shared those happy times with , is it that they can't deal with it, can't understand what is happening 

Illness like that, brings death to relationships, be it couple relationships, or family relationships, or friendships

AND if anyone tells you different then its clear they are lying, because its only human nature to be affected in some way , its only natural to hide away because you don't know how to cope.

But , don't you know that while your friend or partner is struggling to come to terms with their illness the most important thing to them is YOUR friendship; YOUR support ... Normality AS BEST AS NORMALITY CAN BE ... 
The best thing you can do is stay a true friend and not walk away .

We meet people for a reason, and some of the most important people now in my life are my friends who i met since becoming ill, friends who share something in common with each other, friends who want nothing other than to be there for each other through the tears and the smiles. That is what true friendship is about !!!!

We all have our own cross to bear in some way or another and we all need our friends .

 Relationships.

 Isolation .

 Friendship.

Fibromyalgia

I had never heard of Fibromyalgia until i got ill and was diagnosed with it , i then thought i was hit with an illness with no cure, what would i do now? oh no !!!!!! devastation; fear; ignorance ....

As the months went by i began to have more severe symptoms and i felt so alone, it seemed i had no support and i would just have to bear this on my own, and so i decided to help me cope and possibly learn more about my illness and its symptoms i decided to write a blog , never dreaming that anyone would be interested enough to read them  WRONG !!!!!! i was so surprised just how many people were interested enough to read my blogs , and suddenly it seemed that everyone was getting diagnosed with this terrible illness

My friends Sue, Ann & Val....
and just recently Karen 

then there is the other people i have come into contact through cfs/me support group and Fibromyalgia support 

I just wanted to say that although my blogs are very personal to me and my symptoms, not everyone develops full body Fibro and not everybody has to give up work and end up being in a wheelchair and needing a full time carer BUT everyone needs support and a shoulder to cry on , everyone needs friends, everyone needs support

So.....
I'm glad that i decided to write when i can and i'm glad that perhaps in some small way i have managed to help someone in need

They say that things happen for a reason , well maybe i got Fibromyalgia so that i could help others in a way the medical services can't , and maybe the only positive that has come out of this horrible illness for me is the fact that i have been able to help other people 

So Karen if you read this , know that you are in my thoughts, Fibromyalgia is a frightening thing and it just is so overwhelming at times , but if ever you need to talk , i am a good listener ....

And, if you decide to read through my screeds of blogs , well then i hope that they can help you make sense of this illness and your emotions and feelings. Sometimes just knowing that you are not alone helps immensely

To anyone out there who reads this i wish you well
Hugs
Kiara xx

I feel like an old lady living in a young woman's body

It seems to me that we take so much for granted until it's gone . Having cfs/me and Fibromyalgia dictates so much of my life from my everyday living skills to " if I can even stay awake for more than an hour" without feeling utterly exhausted. My personal relationship has also suffered in so many ways, for now it's completely different I am not the person I was, she is lost in a fog of illness and all things disabling , however one positive thro all of this hell is our love, that deep understanding of each other, almost knowing what the other person is thinking , The love of a deep partnership , the love I feel for my husband, that will never change . So now I wonder what my tomorrow will bring to me, and I hope to please be well , yes you don't appreciate things in life until they are gone, only then do you truly appreciate the good things that life has to offer and how unique is this gift we are given- the gift of life. 

I am a young woman in an old woman's body, My Fibromyalgia mainly affects my legs, excruciating pain and stiffness from my hips makes it almost impossible to walk, then there is the unsteadiness and fear of possibly falling . I've fallen a few times and the fear of helplessness this brings is un-describable. I miss my heels , and i have no energy nor the will to put my make-up on , try telling someone ill in bed with a bad flu 'put your make-up on for it will make you feel better' well that's what it is like for me! except with flu you don't suffer such intense pain and ofcourse you can be well again.

My confusion and forgetfulness upsets me, simple words don't come easy to me and i often say the wrong word for what i am actually trying to say. Then there is the isolation .......

People just don't understand, even if they try to no-one can ever know my emotional or physical pain, no-one except fellow sufferers :(

'Have a nice day ' well i will try to 

'hope you feel better soon' this is all i want from life...However until then i am an old lady living in a young woman's body and i miss my life so much !! :( 

hugs Kiara

Live for the moment

The past month has been a mixture of up days and down days , extreme tiredness and yes another virus :( 

I was admitted to hospital on Saturday 19th July late evening , suffering severe chest pain and difficulty in breathing . They did all the blood tests and decided to keep me in overnight to do more tests in the morning , more blood tests ; scans; chest x-rays ....
All clear , confirmed that no damage was done to my heart ( thankfully) and i was allowed home late Sunday afternoon :)

Live for the moment; Live for today ...

I got such a fright and the whole experience was so scary - brought it home to me just how precious life is for it can be gone in the blink of an eye , How precious family and friends are , and more importantly to me How Precious Colin is to me . He must have gone through such worry and distressing emotions, such helplessness :(
The consultant put it down to muscle pain, he even suggested that it could be another symptom of Fibromyalgia 

I've been very tired today and slept a lot but that's nothing unusual for me , perhaps tomorrow i will have more energy ...

To all who read this i wish you well and to anyone who is ill and/or suffering cfs/me or Fibromyalgia , infact any of the invisible illnesses that can be so impossible to live with and for family and friends so difficult to understand , I  send you healing thoughts and lots of love

Take Care and try to enjoy life , smile ; laugh; love 
Hugs 
Kiara xx

A New Me

I am here again , my blog /my best friend to whom i can tell all my fears; hopes & dreams to ...

I am looking at bruising on my body , this is something new and appears just with slight pressure on my skin . The pic i am going to show was caused by me just leaning my elbow on my knee , crazy isn't it ...

Anyway i'm thinking about a new me

and as i've lost over 28lbs and still going, my aim to get back to being a size 14 from an 18

i am already down one size :) Aaaand i'm thinking lets go all the way and get a new hairstyle This is me at the moment 

I want to be more modern and so i am going

for a short look , something like this ...

So i'm booked to get it done on Thursday

a friend whom i used to work with has managed to find me a good hairdresser who will come to my home to do it :) Thanks Marjory you're a star .

Wish me luck everyone :) I think this will give me the pep i am needing to help me feel good about myself again , that and my weight loss :)

I'll be 60 on Thursday Ssshhhhh don't say it too loudly ! but hey its only a number isn't it and anyway my body doesn't feel that age yet even although i have Fibro and Cfs/Me 

Have a good day all and watch this space for updated pics of me and my new chic hairstyle 

Hugs Kiara xx

8/6/14 Here is the new me hairstyle ....

All i need now is the new body 

to go with it , still not bad for 60 considering huh ??? xx

Extreme fatigue

I'm extremely tired today , finding it difficult to focus or concentrate and my body hurts so much, every muscle screaming out in its own way and my poor body feels battered and bruised.

Why ???

I did some toning yesterday , staggered exercise and worked specific muscle areas . My reward - see the above :(

They say that graded exercise is good for Fibromyalgia , yet its contradictory to the fact that it actually makes Cfs worse. The two conditions that i suffer from .

So what do i do, how do i find a happy medium to my predicament ???

My willpower is strong but i can't ignore it when my body is telling me to rest and it hurts to the extreme .

I'm sure many have felt and do feel as i do now . Don't give up; Don't give in....  Pacing is exactly that , pace your energy don't use up all your energy . Take your time and eventually things will get better and you will see and feel the benefits. Baby steps all the way , keep a daily journal this will help you focus on your emotions , help you face up to what your battle is that day , for our battle changes all the time and is ongoing .

 I keep a journal and i find it helps me no end. It lets me approach my fears head on, helps me say the things i cannot say out loud; and it helps me look into/at myself .

Visualisation is also a great thing, it can take you to a beautiful place and help you control your breathing , the aim to enhance relaxation. It also helps to deal with pain ( physical/emotional) for you can wrap this up and let it go , visualise it drifting away . It doesn't matter that you may need to do this daily a hundred times a month , the fact is that you do it and learn to truly let go so that eventually you will find that you have dealt with this pain and it is gone. 

Stay Positive 
Hugs Kiara xx

Fight the fight for recovery

and the right to win your life back .

I Will

I made a promise to myself two days ago. To kick cfs/me in the ass and reclaim my life again!!

!Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. People with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made.

I know i can't do anything about Fibromyalgia as its something my body has to deal with and this can take time, but i'm sick being housebound, i'm sick being unable to do the things i like to do, simple things like just going shopping, or going for a drive. I will beat this... I WILL BEAT IT  and i have started the process of doing stuff and pacing, it makes me feel good that i can help Colin it takes the strain off him and i feel valuable and valued. All these things i haven't felt in such a long time. 

So maybe this is just a dream, but i won't give up 

Watch this space. 

If you could see Fibro it would look like this.......

This is what cfs/me does to you . A prisoner 

someone who lives there life trapped in their bed , unable to do things normally , ISOLATED from the outside world. 

Tired and fed up being ill

It seems that no matter how hard i try i just seem to go round and round in a never ending circle of cfs/me This tiredness is taking over my life and i'm lucky if i can manage a few waking hours in my day- even then i feel as if i'm in a fog 

Wish i had a magic wand to help me be well again.

Positive attitude helps but only if you are believing in yourself and your abilities, this can quickly become a chain around my neck that is weighed down with all kinds of obstacles to stop me on my journey.

I can't even wear make up now to help me feel good about myself as i sweat so much and my hair is soaking all the time, that it seems the stress of washing my hair is not worth it for it will also wipe me out.

How many feel as i do i wonder.

I want to get up and go, i want to leave all this behind and work on maintaining my strengths and try to continue to pace and work throughout my day in a positive way but it just feels impossible at the moment.

Sorry for the moan, sorry i can't be more positive and bring a smile to your face but, life is hard.

Oh i bought some new make-up online so i'm hoping to have a pamper day and manage to wear it. I also bought fast drying gel nails that last up to 2 weeks , great idea but i have a feeling the kit will be kept in my make-up til Christmas lolgiggle

Hugs to All

Kiara xx

Who is this ? Oh yes its me ...... How i want me back again , maybe one day she will appear again. A little older but with a smile. Oh i've lost a stone, something to be happy about :) hard work though for i can't resist sweet stuff. Can't have anything in the flat for i just munch my way through it. 

Guilt

Guilt is a most terrible thing to have to live with.

Guilt of things past done
Guilt of things you cannot change
Guilt of pain caused to others
Guilt of burdening loved ones

I feel so guilty all the time and i wish with all my heart that i could change things. This illness is killing me for i feel so beholden and my guilt just won't go away.

I try to do the best i can, and lately i've been able to do little things but then i crash and i feel so tired , so exhausted , so worthless

I live a life of non existence, i'm never out unless its to the hospital or to visit my doctor, I'm never dressed for what is the point-I'm never out. I have bags full of make-up that i never wear yet i used to love my make-up and i was such a girlie girl.

I have a wardrobe filled with such lovely clothes, clothes that i never wear .

I wish i could turn back the clock , I wish that i could change things but its no use wishing for i can't.

I wish my life was filled with something to look forward to but its not, I have nothing to look forward to .

There are times i want to just jump into my car and go for a drive, just drive and drive but i can't , i'm a prisoner in my own home and my car is only in name for i'm never in it , i've not driven for over 3 years . I miss my independence so very much.

I try i really do , but when times get bad for me, who do i turn to ? there is only one person i can talk to. Yet i cannot open up fully to him for i don't want to burden him with my woes.

I've heard of so many relationships that break down because of illness and the strain it puts on relationships and this scares me. We are strong Colin and I but even the strongest can fall......


I'm sure that there are many people out there who can relate to my feelings and my fears, and i'm sure that there are equally as many who will think that i'm just feeling sorry for myself, but try walking in my shoes for a day , you will beg to get your own shoes back on.

Everyone needs to have a moan now and then , I guess that this is my moan, I apologise for being so down today. But, depression and Guilt is such a terrible thing....

Isn't it ??

Hugs Kiara xx

 My uncle Tom 5yrs my elder ; my gran; my mum 

 Tom and my gran. Tom so much more to me than an uncle , He was my  brother in so many ways 

me and my gran

 me aged 4 

me aged 4 

My life in four pics , all gone now . I miss them so much that it hurts. 

Sometimes

Sometimes we get so lost in our own pain and troubles, that we forget about those around us . Our partners who have to bare the emotional stress and inner pain of seeing their loved one suffer day and night.

Sometimes we get so lost in our own weaknesses and disablement that we are blind to what we are doing to other people and how our actions affect them.

Sometimes we forget the true power of love .

Colin i love you; we are one; i see me in your eyes, and i'm sorry for the pain i put you through , i don't mean to and life is so hard for me sometimes that i forget that its also hard for you too.

Hugs Kiara xx

My old friend the virus AND more ....

Well since my last blog i've had yet ANOTHER virus, i still feel quite shaky and lethargic. But some good things have happened .....

I've started doing breathing exercises and visualisation meditation its a week in and i must say i feel more energised and also i haven't needed to nap for 6 days. I have also started gentle toning , it hurts like mad but i'm sure in the end it will do my muscles good and rebuild the strength that i have lost over the last 3 years . I am positive in my outlook and i am aiming for the bigger picture , so as long as i don't lose focus or hope well, anything could happen .

I'm learning to walk again too, my aim to be able to walk around the shops and just enjoy life . At the moment i can only do a short distance holding on to Colin but hey this time next year watch this space :) 

Its M.E. Awareness Day on 12thMay we are posting before pics without make-up and after with make-up . We hope to do well with raising funds so PLease, give even a little it will help , and remember this date 12thMay :) 

Hugs Kiara x

Viruses and all things blue

Well here i am again having to endure another virus, I've been feeling so bad that the last 3 days have been spent in bed, today i feel a little better with only a slight fluish feeling , this is almost always with me anyway as it is part and parcel of having cfs/me & Fibro 

I've joined an open ME group through FB its nice to be able to have online support and feel 'not so alone' but it does drain me being online writing and answering questions by other members.

I've decided to take up Jewellery Making as a hobby, i need something to do and it will hopefully help my coordination skills as well as my concentration. Also i'm looking forward to designing my own earrings etc.. There is a bead shop in town so i'm excited about going there and looking at all they have , i feel a spending spree coming on.

Colin applied for a carers grant from the carers trust,  to take me on a holiday or short breaks , glad to say we got it and we are planning meals out and theatre shows i particularly would like to see :) our first is Dancing on ice ( the last show) and a meal out :) Its been so long since we have been out as a couple because of my health and the fact i take panic attacks when out, but i'm really looking forward to our date and i am hoping upon hope that my health will be fine and i will manage to get out and enjoy the show .

I think i would rather spread the grant throughout the year going to see shows rather than on one payment towards a holiday , I've always worried that we booked a holiday then i would get a flare up and have to spend the full holiday in bed.

I do miss having a lovely hot bubble bath tho and this is something guaranteed when going on holiday ( as long as Colin can lift me in and out of the bath)

Its great to see the sunshine even although i've been told that its cold outside , and i'm looking forward to going out once the weather heats up a bit :) 

Enjoy your day and smile :) 
hugs Kiara x    

Moving on from last blog ...

Well .......

I'm much better pain wise, my meds have kicked in and they are helping a lot :) I was seen at the hospital for a lump i had on my mouth so they took it out and now i have 3 stitches and a very sore mouth , I get my stitches out this Thurs 7th March . I'm dreading it !!!!!!!!!!!!!!!!!!!

I joined YouTube again to help me find something to do during the day other than just watching TV or sleeping. I was a member way back in 2012 and it good to go back . I've not contacted any of my old friends but i'm sure that in time our paths will cross. My channel is dedicated to the romantic in me . Maybe i will post some of my poetry i don't know. I used to make music videos and add my poetry so maybe I'll do that again.... maybe ...

I've joined an online Fibromyalgia support site i've also joined an cfs/me chat room connected to fb , i've made a few online friends there whom i chat to , but all in all i find it very tiring , but good to be able to socialise this way. I would recommend.

We lost little Alfie about a month ago , he had a blood clot in his heart. So unusual for a young cat for he had just turned 2 years old . Miss him so much . We are now in the process of buying a Maine Coon kitten , we get her in April and i can't wait. We've named her Kiesha . Poor Kismet is so lost without Alfie so she needs a cat friend .

meet Kiesha 

Sounds like i've done quite a lot, but i've not really . Haven't been out except for hospital appointments . I'm looking forward for better weather, saw the first crocus of springtime last week :)

Need to nap now so will finish my blog.


 Feeling tired .......

Intense Itchiness

Does anyone suffer extreme intense itchiness ???



I am being driven crazy with sudden intense itchines all over my body. I don't know what i would do if it wasn't for Colin, because I can't reach to scratch because of my poor mobility :-(



Its the normal things that we take for granted that others really don't think about. I also read an article about a fellow Fibromyalgia sufferer having problems with swallowing and food being stuck. I too get the feeling of stuck food,  quite alot, its so painful until it goes down.  This also happens with my meds. I hadn't related this to Fibromyalgia until i read the article



Back to itchiness, What i suffer is so intense that it could make me cry , I wonder if its medication related or Fibro related .

Weight Loss & Healthy Eating

Today i joined Tesco Healthy Eating site , its full of ideas for recipes and advice on excersize. I am following the GI Diet plan and my aim is to lose 2 stone by the end of May. This plan is so easy to follow and i would definitely recommend it to others .



Watch this space for i feel very positive regarding motivation and inspiration offered with this site . Go On DO IT YOU WILL SURPRISE YOURSELF I'M SURE :-) xx

Oh and did i tell you that its FREE !!!!

NB. I used to enjoy doing armchair excersizes with the residents where i used to work , I'm thinking now i should try to apply some of this to myself and my care plan. Colin does gentle yoga with me , so its good to learn breathing skills and gentle excersize but being disabled is no excuse to being overweight . Wish me luck :-) x



Hugs Kiara xx

fitness awareness

Is there life after pain, well i definitely think so and i aim to find that place for me. My meds are working really well and i find that each new day i have something to look forward to.

 I'm NOT pain free but i DO find that i can cope so much better now and that although i have time when i feel really tired , this is also not as bad and i am not needing to sleep so much.

Today i thought about asking my doctor to refer me to a gym so that i can start to focus on getting stronger, a battle in its own. I've decided to wait until i go to the hospital next as  my consultant may have this in my care plan, but if not... this is going to be my aim so that i don't need my wheelchair just as much and i can actually walk more .

 I'd be happy to use my walker outside if if meant one step closer to normality for me. I know this will be a long way off and a battle on its own, but i stay positive and focussed ....

Head Sweats

It seems the latest thing i must endure is terrible head sweats, its so bad that when this happens it looks and feels like i have just come out of the shower !!! I looked online just to confirm my fears, and yes ... this is another symptom of Fibromyalgia , I just wonder what next.

My doctor phoned me this afternoon to check on how i was doing since he increased my Venlafaxin, at least on a positive note i'm glad to say that i'm coping much better with my pain and the severity of it seems to be so much less at the moment.

If only life in general was so easy and we could just take a pill to make it disappear, and let us walk away from our past and leave it there , it seems for me at least this is an impossible task and i'm so sad that some aspects of my life won't let me rest. We all do things we have regretted haven't we ??????


hugs Kiara xx

PS.
Valentines Day will soon be upon us , to all you lovers out there have a wonderful day and a romantic evening :-)

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