Sunday, 13 September 2009

good from bad.

cfs/me/fibro symptoms are horrid.

unless you have been or are affected by them it is hard to know just how bad you can feel. or how your life can change so drastically. i was a very active person. when not working i would be walking, cycling and doing yoga to keep myself fit. from having all that energy to having zero has been so hard. i also had a home i worked hard to get, an ok social life and a job. not any more.

severe fatigue is nothing compared to feeling a 'bit tired'. my symptoms vary from day to day (sometimes hour to hour) and in intensity. every day i feel like i have flu. on a 'good' day it is like mild flu and on a 'bad' day it is like when flu is so bad it hurts to move in your bed let alone get out of it. i have difficulties with my memory and concentration, tender glands, muscle and joint pain, headaches, disturbed and unrefreshed sleep, nausea, feeling very hot or very cold for no reason, night sweats, feeling dizzy, depression, putting on three stone, problems with my balance and sensitivity to noise and light. phew!

however i am one of the lucky ones. i do not need a wheelchair and i am not confined to bed.

i have come to accept these symptoms. this does not mean i have given up hope for improvement. far from it. i continue to research and try new things to ease my symptoms which i will share with you in this blog.

i have also been through financial hell due to not earning, i am going to lose my home soon as an outcome. i also am tired of trying to explain to people what is wrong with me and why i am not working etc when i 'look' ok.

i have asked myself if my life has changed for the better in any way since my symptoms began?
the answer is yes! and to my surprise i was able to list quite a few good things!

+i always wanted a cat but was always too be busy and travelled away for work, so how could i look after one? well now i have three! when i first was off work sick i adopted my rescue cat biba. nine days later she gave birth to her daughter orla under the sofa! nobody had known she was pregnant! a few weeks ago i adopted cissy. she needed homed with other cats as she has eyesight problems. they have brought so much joy into my life. they make me laugh so much and i love them to bits! i would not have had them in my life had i not gotten unwell.

+in march this year i was offered an allotment. ironic as i had been on the waiting lists for years and now when i was least able to take one on -dada! i suddenly had one. i have been lucky as my friend emily offered to share it with me and that has been a blessing. i must thank emily for doing the majority of the work due to the fact i rarely seem to make it out here and when i do i often just manage to sit there and watch as she works her magic. it is like a little retreat in the city where i forget all my troubles and just be.

+i have had to slow down. no choice. i was always so busy. i would cram so much into each day and even feel a bit guilty if i was not always 'doing'.something. i have had to learn how to just 'be'.

+i have had to learn to simplify things. i have had my hair cropped as dealing with long hair takes to much energy etc. hours of washing, drying, straightening, styling. gone. and it's good to just wash it in the shower and towel dry. added bonus, i actually like it!

+i have always been very creative but not had the time to create. i have had time to spend knitting, drawing, sewing and printing etc. this is not as often as i would like as i don't always have the mental 'space' or energy. but it is a start. i have been able to make little pressy's for people that i could not afford to buy.

+i have had to learn to live in the 'now'. i can't plan ahead often as i don't know how i will be feeling the next hour let alone the next week! this is a good thing as when we are constantly planning ahead we often forget to 'stop and smell the roses'.

+i have had time to think about my career. i know when i get well enough to work again i will go in a different direction to what i have been doing. even in these hard times i think it makes sense to try and do something meaningful that we enjoy instead of spending hours unhappy in a stressful job we don't enjoy. i am now going to head down the path that feels right. i won't earn as much but i will be happier. sometimes it takes getting ill to make positive changes in your life.

+i am learning to say 'no'. i am still not very good at it. now i often have no choice but to say 'sorry i am too poorly today - lets meet up another time'.

+i am learning to 'stop sweating the small stuff' at last. little thing don't bother me as much. my health is the most important thing. i have really tried to deal with the things i can change and accept the things i can't. i was not like this before i got ill - i would worry about everything.

i would love to hear what good things have came out of your illness, please share your experiences.


  1. Kim, thank you for sharing your story. I have not suffered through such illness myself. However, when I was in my early twenties I went through a period of very bleak depression and that was physically hard and life changing. Since then I've been very fortunate and am mostly ok and healthy. Never taking things for granted, of course. I am pleased to know you are finding so many positives. I came to your blog via your lovely photo on flickr and hope you don't mind me adding it to my favourites for my next 'mosaic monday'. All best wishes to you, Cathyx

  2. thank you so much Cathy! i am glad to hear that after going through such a bad time with depression it has not returned. your work is very inspiring to me and i would be delighted to be in your mosaic monday. x

  3. I agree that you tell an inspirational story. There is still a mystical shadow over this illness, and if your blog brings some light to what people like yourself have to battle, then you have won.

    I wish you all the luck with this, Kim! x

  4. Dear Kim,

    thank you for sharing this with us. I can relate to what you write about symptoms and the affects a disease can have. The best what happened to me (I have Fibromyalgia) was to start with Fröken Skicklig.

    Sending you a warm hug from Berlin,


  5. all the silver linings that you've listed are incredibly inspiring. there is much to learn from your situation and i'm glad you have created this blog to share with the world. xo....