stiffffffffff

Pain Pain Pain .... and such stiffness in my joints and bones , I hate this illness , it controls my every being and is 24/7 full on . Even when i am ok so to speak , my skin burns, my muscles spasm which has now moved to my jaw and, i wonder just how bad is it going to get. I dread the day Colin gets ill for i've been told i would be put into respite. Not that there is anything wrong with that for i worked in the care profession and i met and assisted many in respite care. I just don't imagine the day it could be me. I wonder if i ended up in Oakbank how my fellow colleagues would feel and how i would feel..Hmmmm a bit scary actually. pride and stuff is a bad thing isn't it . I just can't imagine my naked body being washed by people i used to work with, and my flower !!!!!! hahahaaaaaa Silly i know for we all need help of one sort or another at times but its different when its by fellow workers. 


Colin is going out Christmas shopping this afternoon so i will be alone with my cats and my walking frame until he comes back . Its mad that i would need to pay for a carer to sot with me to give Colin free time away from me, and its crazy that there are no befriending services for people under 60 . Colin has looked into it all with no success. He is registered with Carers UK and is at the moment looking for to start a project to build a centre and a hydrotherapy pool, he's got the backing of many people and is shortly going to make a FB page solely for that purpose and to attract donations. We got news the other day that there may be a pool available so it would just be a matter of getting it up and running, employ a physiotherapist and a life guard, a very exciting project and i can't wait to hear how he gets on with his meeting with those connected to this pool, sorry i can't remember their names but watch this space for more info.

I imagine that there are so many people who would benefit from hydrotherapy pool, me included. Talking of which I'm waiting to hear from physiotherapy to try and help excersize my body so to keep it supple and my circulation going well. I think it will be quite a task for i experience added increase pain when i try to do anything , typing included. I tried to use a voice recogniser but it comes away with so many funny thing not in the least connected to what i am saying, i guess it doesn't understand Scottish hahahaaaaaaa 

For anyone experiencing Fibro symptoms,  and then decide to go onto the internet to self diagnose, it is important to know that you must be diagnosed by a rheumatologist *

I go to the hospital again on the 11th Dec, to have a breast lump removed , its only day surgery but i am quite nervous about it, but its better out than in as its getting quite big now.


Well i have no more chit-chat today , hope my little bit of news is interesting reading and that my blog helps all of you out there who may feel isolated and lonely, i've been there and i know how it feels .

one of my few hobbies now is making music videos, i used to do loads and put them on YouTube but now i just do a few , anyway here is a fun one for all my friends and all my Google+ friends... enjoy , Ggggrrrrrrr I can't get the video to play , I'll try to re post this with the edited video ... 

Hugs Kira xx  

Tears

So sore today and feeling sad :-(  love to all , hugs Kira xx

Housebound issues

Many of us just take our life for granted, its normal, yet now when i see someone walking down the street wearing nice shoes i get sad, for i can't wear nice shoes unless they are stuck in my wheelchair stirrups so they don't fall off, and even then my legs hurt badly.

Being housebound we can get stuck in memory traps, going over and over our nice memories just to keep us feeling good. I now know and understand more fully the process of the elderly and reminiscence, its just memories that are stuck , like a video just playing over and over. we have no control over our own head videos do we. I'm sure many will relate to this part of brain fog.


I lost my hair, i had beautiful long dark hair almost to my waist when i got married just before i got ill . I loved my hair, my crowning glory so to speak . Medications and stress led me to lose my hair . I've not been brave enough to openly show pics of me until  now , but i did today . After all this is a process many go thro, people who have chemotherapy; alopecia;  for example then there are the ones like me who endure long term illnesses. .

my hair is growing back slowly , white , i've decided to stay white rather than colour it when it comes back, anyway i can't put my arms above my head so Colin would have to do the colouring for me, he's good at that too as he did my roots before lost my hair, he also does my nails and my make-up for me i really feel blessed he is mine and is such a good husband and carer , too much hassle for to get it coloured now , even if Colin did it and i can never know when i will be well enough to sit up for long periods of time and the colouring may damage my scalp. So many things have changed in my life now.

I wrote my letter to Santa , all i want is to be well enough to enjoy Christmas day with my husband . My perspective on life and the things that are important to me have also changed. but i think that deep down i was always a good person who just made bad choices until now for i was never the one at fault. How thing in general have changed now , attitudes to things etc even 10years ago things like marriage and divorce were looked at differently. Getting deep now Ooooooops

So anyway today my blog is about me and attitudes of others , this came about really because of Marjory a friend on FB I never knew that you were so compassionate in your thoughts, come to think of it i never really knew you and you never really knew me, we were passing work colleagues but i would like to think of you as a friend . You have inspired me today so that's a good thing, well good for me anyway. I wonder do we ever really know someone or is it just our own judgement of that person that we go by.

And the others who are housebound and suffering daily I'm sure they can also relate to some of my thoughts
Have a good day wherever you are , know that i also think of you


Hugs Kiara x

Christmas Wishes

The hustle and bustle of Christmas, the shopping trips and frustrations of battling through all the bargain buys, working and sharing your work life with your home life . Parties; Christmas dinner ....


This is my Christmas wish for i miss all those things so much. I cannot shop, I cannot work, I miss company , and i cannot even wrap presents or cook
So spare a thought for me and all other disabled people when you moan about what you are having to endure over the Christmas period.

Many of us are lonely; Some homeless; and life has changed so much for them that it hurts but it does change our perspective on what is important in life.

To all fellow sufferers

Happy Christmas my thoughts are with you , I hope this pic brings a little smile to your face :-)

Ps I visited my old workplace this afternoon it was so lovely to see everyone again although a bit overwhelming and emotional for me, i wasn't prepared to get to upset. I guess i just was reminded of what was and what is now :-( Anyway i will definitely go back when i have another good day ....... To all my friends hey it was just like i had never been away, doesn't time fly past . My wish for you is - enjoy Christmas and , hold your loved ones near to your heart.

hugs Kira

I need a hero

Hi every-one, so its been a little while since my last blog. I've felt so weak and ill those past days, plus could hardly move with this awful pain, all you fellow sufferers will know what i mean about stiffness of joints and muscle pain :-(

I used to make lots of music videos ages ago and post them on YouTube, don't do it now but tonight decided to just put one together so plan to post it here. Unable to upload for some reason but i will try another time ....

I've also caught up with some friends i used to work with many moons ago, or so it seems like many moons ago. My memory isn't good so its taken me a few times to actually recognise some faces. Hope some of us can meet up, and i am only too happy to invite people up for a coffee but poor Colin will be the coffee maid, as i can't because of my muscle spasms, what a life eh ... but i still fight on and on my good days i just try to smile, nothing else for it


Oh and guess what ???? today i drove my car for the first time in almost 3 years of being disabled !!! I walked down from my flat to the lift ( very first time too) and drove my car around the car park and onto the road then back agai. I'm sooooooooooooooooooooooooooooooooooooo  pleased and over the moon about it. Its good to feel i maybe getting some skills back again


 i so miss being me and my independence .


So watch out once i'm driving next step shopping hahahahaaaaaaa been away fro TK Maxx too long too , need to lose my extra weight tho that my wheelchair has put on my hips


Happy Sunday

Hugs Kira xx

out of action :-(

I've been bedded down for the past 10days with a mother of viruses and felt absolutely awful. Had emergency services called out twice and the doctor seen to me 3 times, glad to say that I'm turning the corner and I'm starting to feel better, so much so that i am able to sit up for a little while and write my blog . If anyone out there in cyber blog land is suffering from flu or viral illness at the moment i send to you heart warming wishes to get well soon and healing thoughts from me to you . While i was ill i lost 7lbs in one week, so hey the bright side is that its a sure weight loss programme , lolgiggle ...


take care
Hugs Kira x

we can pick our friends but not our family

Sometimes it feels that i can't do anything right for doing wrong in my daughters eyes. Its got to the point that she upset me so much that i told her i can't take her opinionated sarcasm pointed solely at me. I gave her a week and she didn't get back to me so i text her and suggested that we just txt each other now and then, for its obvious that we cannot get on and my health is  dominating my life . She doesn't and won't try to understand my illness . It hurts me to say that i believe things can never be mended between us , she is causing me so much upset that i have finally made the decision to let her get on with her life, the sacrifice is that she won't let me see my grandchildren.

My heart and soul hurts so much but in time i know i will manage to live without her , but she will always be my daughter and in my heart.  My last msg to her was that i believe maybe one day she will start to know and accept what is really important in life ; life is too short to be unhappy; and i will always love her.

I guess no matter what i do it will never be right and i just need to accept this.

Colin is such a great support to me , my calm in the storm

I'm sure I'm not the only one who suffers family problems over illness , all i can say to support them is , stay strong  .

Hugs Kira xx

moments in time

I'm excited to tell you that i have published through shoestring publishing Allan and Alison , my first poetry book. Without their help , this my dream would never have become a reality . My book is called Moments In Time and is based on my own personal experiences . A born romantic am i and i hope if you read my book that it will take you on a beautiful journey . You can obtain it at lulu marketplace , at the moment its not available on Amazon , but hopefully this will be rectified soon.

I want to say a special thank-you to Allan and Alison at 'shoestring publishing' if anyone reading this wants to publish a book, then i would highly recommend they go through Shoestring Publishing.

All proceedings from my book is going to the hydrotherapy project , our aim is to build a hydrotherapy centre to help all sufferers of a disabling condition .

Kiara x