I wonder about everyone who followed my blog in the past , and I hope that you are well ( or at least as well can be expected)
Life for me is the same except I am now having to deal with added symptoms caused by the use of Pregabalin ( Lyrica)
My tongue is split , very tender, burns at times
I have problems with dryness in my eyes; nose; mouth; throat and further down , I have problems swallowing now, and I can only eat porridge or drink complan
I get mouth ulcers
Bladder/ bowel problems.
I am now waiting to go into hospital this coming Friday 18/12/15 for investigations. My iron levels are at 9 they should be 150 . This is causing its own set of problems , I find it hard to cope with feeling so weak and so poorly all the time.
My doctor is now taking me off Pregabalin ( Lyrica) it's been 6 months of hard labour dealing with the drastic withdrawals , I have another two months to go before I am completely off this medication and I would strongly advise anyone who is taking this to be very aware of the side effects it can cause. Why doesn't doctors warn us of the risks and withdrawals of coming off this medication Before we are put on it!! Give us informed choices !!!!!
I go on Friday to hospital for investigations that will determine if I have cancer , I'm very scared and I wonder where will this all end?
It feels like the past six years since I became poorly with Fybromyalgia I have been living in a bubble and I am more or less cut off from society. Anyone who knew me before I got ill will know how much I struggle with this for I loved life; I loved people; I was always a people person , outgoing, happy-go-lucky ! I'm now social phobic and my life only consists of visits to the hospital or doctor ,( even doctors visits are now telephone consultations and house calls; same with nursing services)
I feel old before my time and there's nothing I can do about it . I am bereaved and I grieve daily for the different aspects of my life that I have lost never to get back . Acceptance even now won't come
Life is precious , so live your life each new day as if it is a gift, for when you think about it well it is isn't it? One day our life will end and we will just become a memory for those who really cared about us .
Wish me luck for Friday
Hugs xx
This is my ongoing journal ; I write an honest account of my fears; my vulnerability; my needs; my strengths....... In the hope that i can make some sense from my suffering and my pain, and in the hope that i can help other sufferers understand their own emotions and know that they are not alone .
Monday, 14 December 2015
Monday, 6 October 2014
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
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
Wednesday, 24 September 2014
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
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
Saturday, 20 September 2014
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
Saturday, 13 September 2014
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 .....
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 .
Friday, 12 September 2014
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 .
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 .
Thursday, 4 September 2014
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
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
Sunday, 31 August 2014
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 !! :(
Monday, 21 July 2014
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
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
Monday, 2 June 2014
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 ...
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 ...
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
for a short look , something like this ...
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 ....
to go with it , still not bad for 60 considering huh ??? xx
Wednesday, 21 May 2014
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
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
and the right to win your life back .
Tuesday, 20 May 2014
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.......
!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.......
someone who lives there life trapped in their bed , unable to do things normally , ISOLATED from the outside world.
Saturday, 17 May 2014
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.
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.
Saturday, 10 May 2014
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 aged 4
me aged 4
My life in four pics , all gone now . I miss them so much that it hurts.
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 aged 4
me aged 4
My life in four pics , all gone now . I miss them so much that it hurts.
Monday, 21 April 2014
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
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
Monday, 7 April 2014
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
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
Wednesday, 19 March 2014
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
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
Sunday, 2 March 2014
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 .
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 .......
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 .
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 .......
Tuesday, 18 February 2014
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 .
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 .
Monday, 17 February 2014
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
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