sunshine

Its a lovely brisk sun shiny day today , so Colin got me out for a walk in Callendar Park for a little while . It was so good to breath in fresh air , see the awesome trees and listen to children playing . You miss such things that others take for granted . I had a lovely time, we weren't out for long but in that time i actually felt part of the human race :-) If its nice again tomorrow and if, i'm up to it Colin is going to take me out again . hugs Kira x

Life has a way of kicking us when we are down, but it also has a way of surprising us with the loveliest of things , like friends . Its not the quantity of friends that is important, its the quality of that friendship ' a friendship that is unconditional ' for you can be in a room filled with 100 people and yet still feel like the loneliest person on earth , but for our friends where would we be . 

I am blessed to have found the dearest of friends through the strangest of meetings , but those friends were brought to me for a reason, and i them.

Never take for granted what you have in your life , for even the bad things were brought to you for a reason, maybe its a matter of until you are burnt you cannot truly appreciate the good things in life , maybe its a matter of until you know someone else's pain , you cannot appreciate your own pain and the quality of life you have . 

treasure your friends and the good things in your life, own the bad things in your life and learn to move forward , it may take time but it will happen , even if its just forgiving someone for hurting you , or admitting you hurt someone and apologising .

hugs, Kira x

a hug from my heart to you

Sometimes its so hard to smile when everything inside you is crying in pain, there are so many different pains to deal with , an ongoing journey , a battle every day . But, as long as we know we have friends and people who care about us then we will somehow get through . I remember there was a time when i didn't smile ever, people said i had a sultry look, when really my look was that of a woman who was hurting deeply, it took a special person to see that and help me smile again. I now try to smile and pass on my smile to all i come in contact with , for its free and its my way of sending you a hug from my heart . Stay strong, keep going , you are not alone 

Thank-you from my heart for all your support , it may seem at times that i don't listen , and my blog is that of pain and sadness, but i truly try to be inspirational and help the best i can , it is my way of telling you 'don't give up' i'm here for you.

hugs

Kira x 

CBT

http://www.counselling-directory.org.uk/chronic-fatigue-syndrome.html

I have found this link very interesting regarding cfs/me symptoms and support . I hope that anyone reading this link will find it just as interesting and help give them some hope for a brighter more positive future


hugs Kira x

How do I ???

How do I stay positive , how do I try to make each new day a good one , when most of the time I have to return to bed for most of the day and the height of my activity plan is going back to bed and sleeping .

I feel i am missing out in so much , even just 'normal' living and i have no incentive to even try to do things for i know before i start that i can't. 

However my plan for today is this ....

My daughter gave me a mini stepper, my aim for today is to try and go on this exerciser for at least 2 minutes, and slowly and gradually work up to 5 mins ( even more if my condition will let me) 

wish me luck :-) 

Seems perhaps a bad idea, I think that sometimes my head is full of good ideas that my body just can't fulfil  :-( 


The sun is out this morning but all i want to do is go back to bed and sleep, I guess i'm not alone in that one, such a classic symptom of cfs/me , so soul destroying .


All i can say is that whatever your day brings , i hope there is a little sunshine there and a few smiles too

hugs Kira x  

more info on cfs/me & fibromyalgia

 http://www.fibroaction.org/News/Donating-Blood-with-Fibro.aspx

FibroAction - Raising Awareness of Fibromyalgia Syndrome in the UK - Donating Blood with Fibro

www.fibroaction.org

Following the recent introduction of the ban on blood donation by people with CF...See m

follow the link for more info regarding those issues , hugs Kira x

smile :-)

Its a beautiful day , lets smile together .....



hugs , Kira x

Talk to me

I need some moral support from all of you out their who read my blog . Tell me how my blog helps you . Please leave me some feedback even if its only to say hello . Its nice to know that people out there are interested and find my blog a help to them. I have so many low days and sometimes i feel 'what's the point' so i would really appreciate your feedback too.

Hugs Kira x

Help and links for carers

I have decided to post some UK links that may help carers , I'm aware that not all of the links may  be of use , but hopefully the information given may help in some small way .

hugs, Kira x


.http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

http://www.actionforchildren.org.uk/our-services/young-people/supporting-young-carers

http://www.advantagecareathome.com/holiday-care?gclid=CNmzjZjpybUCFabLtAodingASA

There is no simple answer to pain relief and remedies that may help make sufferers life more bearable. I have tried a few alternative therapies. I was recommended to visit the Rapha Centre in Comrie , i was assessed for mineral and vitamin deficiency and put on a 3month course of meds , i went as far as taking the meds for 6 months but realistically i didn't notice any definite difference . This is not to say it won't help anyone else and to go with an open mind is the key factor. I also did a 6 month course of controlled acupuncture, I found this to be extremely painful and every session was a s painful as the one before . however i did notice a difference in my energy and pain levels at first but these did not last long so my doctor has now discontinued my treatments. My next course of action is hypnotherapy , i'm keeping an open mind about it but i must be honest with myself and i am extremely wary about this . I've to see my hospital consultant on 7th March 2013 to discuss and make an appointment.

So many options, with no real benefits , i don't mean to sound down but i sometimes feel the medical practice are just shooting in the dark and not really doing anything positive to help me , while i go on living in this shell of an existence day after day . The video i've uploaded is such a beautiful one that isn't it apt to play when we feel down, a song to remind us that we are indeed special and it is a wonderful world in many ways .

hugs Kira x

http://www.actionforme.org.uk/home

Action for CFS/ME is a sight where people can come together online and discuss their troubles and fears, share how they are coping with their illness and find helpful information regarding  Benefits:
Your Rights: How the benefit system works and what to expect at an interview:

It is a very positive support line to look at and possibly make new friends . I myself joined but looking back i wasn't ready to accept my illness and so found it difficult to accept the help on offer. I did however make some valuable friends there, whom i still keep in touch with .

If Action for ME isn't for you , it may at least provide some interesting reading and give you an insight to the benefit system

 http://www.actionforme.org.uk/home

hugs

Kira x

issues/ support/ help for fibromyalgia

Fibromyalgia Support Net is a web portal site that sets out to make finding information about Fibromyalgia quick and easy.

As sufferers will tell you, PAIN is the main symptom coupled with varying degrees of tiredness and limited mobility. Here on this web site we look at the critical issues and provide a "drill down" opportunity to learn more about Fibromyalgia and see links to articles, web sites, discussions groups and more.

Fibromyalgia is now more readily recognised and acknowledged by the medical profession, but despite this sufferers often feel helpless and isolated and regularly seek knowledge, treatments and support.

As one sufferer said "my doctor said "Fibromyalgia will not kill you.", but I said, "fineBUT can I live with it?".

The disease is not life-threatening, though the degree of symptoms may vary greatly from day to day with periods of flares (severe worsening of symptoms) or remission.

This portal site is visited by sufferers, their carers and the medical profession, who seek ongoing knowledge and education, and the opportunity of making contacts and online discussions with sufferers, carers and medical personnel. 

1% to 3% of the population are thought to suffer from Fibromyalgia, the majority being women in a ratio 9:1. Although 20-50 is the common age range for sufferers, many claim to have had the illness since childhood or for many years before being properly diagnosed or recognised.

There is no specific "cure" as such and much confused publicity and false promises. Treatments vary between individuals and provide varying degrees of relief. 

Husbands, wives and partners who get involved in the sufferers care often find it difficult to cope as the condition worsens, so we focus on their plight as well as the actual sufferers. See Fibrolads

Canada and North America are far more advanced in knowledge, research and treatments than the UK,  Europe and Australasia where there is still a lot to learn. Other countries have varying degrees of knowledge, sufferer population, research  and treatments, which we hope to feature on this site.

Please save our URL to your favourites and pass on details of our site to friends and contacts who may benefit from the information, knowledge, contacts and advice we offer on our site.

Please Contact Us if you want to tell us useful news, or ask questions which we do not cover on these pages. We cannot give your personal medical advice but we can use your knowledge and experience to build a better resource. sitWW

www.fibromyalgia-support.net also includes the sites www.fibromyalgia-support.comand www.fibromyalgia-support.co.uk map

Fibromyalgia Support Net is a web portal site that sets out to make finding information about Fibromyalgia quick and easy.

ABOUT US
This site is being developed as a "work of love" by Maurice and Mary Clarke. Mary is aFibromyalgia sufferer for over 20 years. They have been married over 37 years and live in Rugby, UK and have 4 grown up children and 3 grandchildren.
The site is based on their knowledge and experiences of the illness, and how acceptance of it has changed across the UK and indeed the world. The strain it puts on public health services and finances is enormous, plus the sufferers and their carers remain confused over many aspects of Fibromyalgia and ask countless questions over what is it? do I have it?, what can I do to treat it? is there a cure?, etc.
In 2008 they helped found the Rugby Fibromyalgia Support Group which now boasts some 70+ members from Warwickshire, Leicestershire and Northamptonshire. Mary is current chair and Maurice secretary. For details of the group phone 01788 333755 or contact us
Maurice recently founded a separate group "Fibrolads" for men who live with ladies who have FM. More details on Fibrolads click here
There is much confusion, mis-understanding and bias stretching from across the medical profession to husbands, wives, partners, friends and relatives of sufferers.
There is an ongoing need for a simple, straightforward web site which tell it as it is, and simplifies and condenses the facts from fiction, the claims and the denials.
The site is based on a number of key elements;

• Unbiased - not driven by the need to promote specific treatments and "cures", but to give options and highlight advantages and reservations.
• Simple - an easy drill down approach from key top level areas
• Groups - how to contact and meet with other sufferers and carers
• Treatments - is there a cure? or just temporary remission or an odd "good day". Is there more than pain killers? Do natural health products work?
• Request - more features, suggest ideas for topics or featured pages.
• Articles - written by experts worldwide on various Fibromyalgia issues
• Web Links - link to and from sites dealing with the wider and more specialist aspects of Fibromyalgia.
• Read one of our founder Maurice's own articles "Fibromyalgia - who cares enough?" here

Please save our URL to your favourites and pass on details of our site to friends and contacts who may benefit from the information and advice we offer on our site. Tell a Friend
Please Contact Us if you want to tell us useful news, or ask questions which we do not cover on these pages.
Fibromyalgia Support Net is a web portal site that sets out to make finding information about Fibromyalgia quick and easy.
USEFUL ARTICLES ON FIBROMYALGIA
The following articles have been written by various established medical writers around the world, in many cases they link to the authors own web site which provides additional useful information relative to the theme of the article. PleaseContact Us if you have an article on or about Fibromyalgia that we could consider for publication here.

• Fibromyalgia - changing life style challenges by Maurice Clarke
• Fibromyalgia: Who cares enough? by Maurice Clarke
• Fibro What? fights back - a CD to help spread the word about Fibromyalgia
• Yoga for Fibromyalgia sufferers - the ups and downs by Maurice S Clarke
• Fibromyalgia: What doctors don't know or tell patients By: Dorothy Anne Seese 
• Fibromyalgia - the three challenges all sufferers face by Maurice Clarke
• Fibromyalgia Pain Management By Spencer Hunt
• Alternative Treatment In Fibromyalgia By Charlene Nuble
• Fibromyalgia and Fluoride By Tina Elmore-Wright
• Fibromyalgia - Healing Is Possible By Dorothy M. Neddermeyer, PhD
• Is Fibromyalgia a Psychosomatic Disorder? By Groshan Fabiola
• Fibromyalgia Swelling By Max Bellamy
• Reduce Fibromyalgia Pain By Sharon A Bell
• Fibromyalgia Specialists By Mike Leuthen
• Emotional Causes of Fibromyalgia By Claudia McNeely
• Fibromyalgia Diet Recommendations By Mike Leuthen
• Interesting Aspects of Fibromyalgia Symptoms
• Popular Myths and Misconceptions about Fibromyalgia
• Stress Experiences during Pregnancy and Fibromyalgia
• The Wide Spectrum of Fibromyalgia Symptoms
• The Relationship between Migraines and Fibromyalgia
• The Healing Properties of a Good Fibromyalgia Diet
• Various Possible Causes of Fibromyalgia
• Improve Your Health by Following Fibromyalgia Alternative Therapies
• Fibromyalgia Often Unspotted during Pregnancy
• Does Fibromyalgia also Affect Men?
• Depression Commonly Mistaken for Fibromyalgia or Chronic Fatigue Syndrome
• Definition and Interesting Features of Fibromyalgia
• Controversial Aspects of Fibromyalgia Pain
• Characteristics of Fibromyalgia Treatments
• Acupuncture as an Effective Alternative Therapy for Fibromyalgia
• Acupuncture in the Treatment of Fibromyalgia
• Are Chiropractors able to Cure Fibromyalgia?

Please save our URL to your favourites and pass on details of our site to friends and contacts who may benefit from the information and advice we offer on our site.Please Contact Us if you want to tell us useful news, or ask questions which we do not cover on these pages.

Links to external web sites and associated programs and services from these articles is not an endorsement by Fibromyalgia Support Net of those facilities. Nothing on this web site should be taken as medical advice, sufferers should always consult their doctor, physician or consultant before undertaking any treatment or taking any medication including natural remedies. Users are advised to take all reasonable precautions before ordering, free or paid for services or products offered for sale via web links on this site.

 I'm sorry that some of the pages appear difficult to read, this is because i copied and pasted them from another sight, however all in all I hope that this can be of help to some of you out there and answer some of your questions .

hugs Kira x

Such a bad virus to fight

Finally after almost 3 weeks of feeling dreadfully ill and hardly being ably to get out of bed , I am finally feeling more better and more myself :-) I still feel done in and need to sleep alot but the haze is lifting and there is sunshine out there to welcome my pale face. I've found a new hobby to catch up on again to pass my time and hopefully let others enjoy it too. I love making musical videos to my favourite music . I've posted a few on my blog already, i'll try to attach one or two to this blog , if it works it should be fun and i'd appreciate your comments. I've tried to add some vids on this page and after about 4 attempts its worked :-) yeah!!!!!!!   i've also managed to add some on my profile page , hope you'll take a look and comment .

Going back to bed shortly as i still feel light headed and tired. Hope you all have a good day , you're in my thoughts . Special thoughts to jacqueline who gave me such a lovely pamper box gift.

love & Namaste Kira x 

I'm ill again with a virus :-(

sending some angel dust to all who are feeling ill as i do today , lets hope for a better day tomorrow . I'm sending you love and positive healing thoughts.

hugs, Kira x

The cycle of cfs/me and Fibromyalgia

It seems so unfair , we have good days and days when we can almost forget that we are ill, then there are payback days when we are so fatigued and weak with this illness that we just want to sleep and our strength is non existant. How unfair !!!!!!!!!!!!!!!!!!!!!!!!!

I think the emotional torture can so easily be soul destroying .

I'm tired today , tired yesterday , but life goes on and tomorrow is a new day

Have a nice evening everyone :-)

hugs Kira x

what would we do without friends ?

Where would we be without our friends .........

I just want to thank Sue & Sarah for there support over  the past weeks of me being stuck in bed  and the difficult time i had . No matter how tired or yukki they may feel too , they are always there for me, and they will never know how much this means . I truly believe we share a unique circle of friendship . Especially dear Sue, we are like the sisters we never knew :-)

Tues and Wednesday have been really good for me, i managed to go out both days and had such a lovely time with Colin and my son Jamie , shopping in Edinburgh yesterday , bought some new things for the house , Tuesday was just a short day out in town but its been so long since i breathed fresh air and seen society that it was a lovely treat , as well as spending quality time with my husband Colin :-)

Today i'm tired , but i managed a few chores which believe me is a new thing for me and makes me feel sooooooooooooooooooooooooo good to be able to do things no matter how small the task . Tomorrow we are going to visit my daughter Angela and our grandchildren Toni & Ryan , i'm looking forward to seeing them, we don't see them enough .

To all who read my blog, I hope that your day has been good, and you have managed one positive achievement even if it is only to get out of bed for a little while , i remember only too well the times i was bedridden and even yet i have episodes when i just sleep and sleep 

hugs , Kiara x

frustrated

i've been feeling so ill for what feels like an eternity now but in reality it s only over  a week now, i want to constantly sleep and the pain i have suffered has been feeling has been  intolerable.The out of hours doctor was called out to me twice on two separate evenings and  both giving me separate medications  . I feel done in and find things very difficult to cope with, My eyes are bleary and so its difficult to focus , my balance is awful and i am very unsteady on my feet , falling backwards a alot, my memory is bad  my speech is very incoherent at times i know that there is nothing i can do about this except that as time goes by it will get better hope for a better day tomorrow where i will feel more normal, as today i'm hoping all this is due to me coming off my Gabapentin, we will see. My doctor is queueing that i have a virus , but also the possibility i'm having side effects to the meds he put me on are having side effects  ( LORAZEPAM AND DIHYDRO-CODEINE  I've had to re-read this entry twice to make corrections on my mistakes and spellings and errors . 

I feel VERY frustrated

hugs

Kira x