Life is so precious

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

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