two years with me - but it's not all bad.

i have been neglecting this blog a tad. i admit i find it easier to post on hyggelig happy as

*i am not sure if anyone reads this.
*if i am feeling rubbish i might moan a bit too much.
*if i'm having an okish day i might to sound a bit too smug.
*i don't always know where i am going with this blog.

one thing i do know is that i will carry on posting and hope to find the direction this blog is going. if i can make even just one person feel less alone in coping with a chronic illness i will be glad i started this blog.

next year i aim to start my series of interviews with lots of people who have one thing in common: chronic illness. people with symptoms, people that have recovered, medical professionals, people who can share experiences with one goal: how to keep happy while life is so restricted and challenging.
i will review books, magazines and treatments, and find out what can help even in a small way.

it is almost two years since my own symptoms started with a bad bout of flu. it's been a very tough couple of years. but it's not all bad. i have tried to stay positive and find a balance. in the last few months i have tried to channel what little energy i have into being creative. it's what makes me happy, but until i became ill and had to slow down i never had the time to make anything.

my proudest moment in these last two years was last week when the new little shop welcome home stocked some little toy bears and cards i had made.
as some day's it's hard just to get out of bed, to be able to create something and sell it feels like an amazing achievement! yes, i wish i had enough energy to make enough to sell in many shops, but it's a start, and i am chuffed to bits.

thank you to my dear friends who have been very encouraging and supportive especially emily who has been simply amazing this last year, to vicki for coming into my life at the right time, and to viv for all the love.

this will be my last post here this year so i wish everyone a wonderful (and as symptom free as possible) festive season. peace and joy. love kim x


p.s ~my MRI scan results must be ok as i have not the results yet. no news is good news!

pp.s ~i will be posting about physiotherapy and graded exercise in the new year. i would love to here about other peoples experience of this or any other related issues. you can contact me at hellohyggelig@ymail.com

ppp.s ~action for ME will be given a donation from many online shops including amazon, tesco and john lewis when you shop through their website www.afme.org.uk

my mri scan

hey sorry i have not posted in ages. today i went for an MRI scan. my neurologist sent me for this and i would highly recommend that anyone with cfs/fibro symptoms should have one to rule out any other nasties that also don't show up in current blood tests. there are some other illnesses with similar symptoms that we may have but our doctors have diagnosed cfs/fibro.

the scan itself is nothing to worry about. you are inside a kind of white tunnel but it ok once you get used to it. you are allowed to bring a cd with you to play that may relax you (you have to stay still for 20 to 40 min) and earphones are supplied to lessen the strange noises that the equipment makes (from road drilling sounds to banging!) i was quite relaxed listening to this so it all went smoothly. it was a strange experience but not a bad one. i will hear from the neurologist with my results in due course.

soggy leaves and jack frost

november weather is well and truly here. bbrrr.. yesterday i took this photo of jack frost on the grass outside the homeopathic hospital. i had an appointment there and was given some new powders and pillules to try. what i like about homeopathic medicine is that the doctors takes the whole person, not just the symptoms into account. you are asked many questions about you and not just your illness. i have to go back in three months. the downside is no coffee is allowed not even the decaf i would drink anyway.

today i felt awful and nearly cancelled my physiotherapy appointment. (i have bad sinus pain, i am shivery, achey and had real trouble getting out of bed) but i went - it's been a while since i was there last. i managed some exercise but boy was i was glad when it was over! ouch! even though i don't feel the physio is helping it must be - i am able to do more now than when i started. a dreary, damp november day - but i still managed to find beauty in the soggy leaves whilst on my way to the hospital. yup, i think we can find beauty just about anywhere if we look hard enough.

i will be working on some interviews for this blog soon. some lovely people who have or have recovered from cfs or fibromialgia. i want to share inspiration and advice from them with you. if you want to share your story please let me know.

a weighty issue

in the last couple of years since being affected by cfs/me/fibro i have put a few stone. before the symptoms started i would walk everywhere, cycle, do yoga every week and was always on the go. go go go. i ate very healthy so was a normal healthy weight. not too fat. not too thin. from being very active to being not very active meant i was not burning the old love handles up any more! not being able to fit into any of my clothes has been a pain in the butt. having to spend my limited budget on 'loose' fitting clothes an even bigger one. but i came to accept it knowing that my weight will stabilise once i again become active. yup i dealt with it. i even dealt with all the constant remarks from my mother about my increasing weight gain each time i saw her. (no mum i don't need to see a dietitian thanks very much) my vanity had already flown out the window had it not?

well today i met a woman who i have not seen since i was a slim, long haired, non chronically fatigued person, and all that i have dealt with and accepted seemed to smack me in the right in the face as soon as she opened her mouth! first she asked me when i was 'due'! then realising by the look on my face that i was not 'expecting' continued to tell me how much weight i put on over and over and that with my hair cut short i looked so totally different!

er cheers love!

(the above photo is nothing to do with this post, however my cat biba does not seem to care how tubby i am!)

blowing away the cobwebs

i was very lucky yesterday to get a (much needed) wee trip out the city to balmaha with an old friend. great to get out the city and see some nature plus get some cobwebs blown away! i only managed a wee walk but that was enough for me to see much beauty and delight my senses! you can see more here.

i have been talking to vicki and watching some of the gupta dvd's. i am going to be following the techniques and telling you about it as i go along. why am i doing this? well i have nothing to lose by accepting vicki's kind offer to learning about this programme and hopefully a lot to gain!

tomorrow i go for another visit to see a doctor at the homeopathic hospital. i will let you know how it goes.

hello!

sorry for such long gaps in between posts. if im feeling really crappity crap (like this week!) i feel i will just be all moany and as that is not the aim of the blog i just email my mate tina instead for a good old symptoms whinge!

this week i have felt so tired, achey and fed up (because i am tired and achey!) and had to cancel everything planned. i only managed a couple of blog posts here and a teeny weeny bit of knitting for an upcoming craft show. except a couple of days ago i had to venture out as my cat biba was ill and had to get taken to the vet. even though it was a short bus ride and a short wait at the vet hospital i was so utterly exhausted when i came home i was back in bed right away. poor biba was so frightened of leaving home and was very brave when get injections from the vet. she has antibiotics to take and should be on the mend soon. tomorrow is my birthday and i hope to have enough energy to celebrate just a little bit!

i will try and be back next week with more regular posts. in the meantime here is a picture of my sweet beautiful biba in her pumpkin bed. happy halloween!

struggling along

i am struggling along this week. yup coping with cfs is hard. been feeling a bit sorry for myself. there is so much i want to do but can't. aaaaaagggghhhhh! i keep telling myself maybe tomorrow. and i have to keep reminding myself that i am one of the lucky ones. i hate to think what it is like to be in a wheelchair all the time.
i have been to see a new neurologist who is going to send me for a mri scan, just to rule any other nasties out. he was so nice and seemed to know a lot about cfs and fibro. he advised going on the wellbeing course that is run for cfs sufferers at glasgows homeopathic hospital. i told him i was already signed up for it in january. i felt he was one of the first doctors to really care about helping me. anyway i still have many things keeping me happy this week. watching this is one of them and here's another.

confused?

i have already mentioned all the recent news regarding the latest findings on the possible causes for cfs and fibro. are you as confused as me? what is XMRV and what is a retrovirus anyway? most importantly what does the discovery mean to us? i found this helpful on adrienne dellwo's blog.

inspiration

apart from lying on the sofa i have been meeting some very inspiring people this week for a coffee (and a virtual coffee!) firstly i met with vicki who has recovered from cfs and is now teaching the gupta technique, that helped improve her symptoms. it was a joy to speak to her and hear her story - she had been affected for many years. i hope she will do a little interview for this blog in the future.

i was also contacted by a couple of very amazing creative women who have managed to set up businesses from home against all the odds. i will be talking more about them in another post.

if anyone has inspired you this week i would love to hear about them.

a little bit of hope

jane, one of my american relations, sent me this article from the new york times. you can also read another similar article here. you may have read/heard about this yourself by now. this is good news for all of us that are affected with cfs/me, as surely if science is closer to finding the real cause, then it will be closer to finding a cure or at the very least better treatment of the symptoms.

having a laugh

i picked up a leaflet a couple of weeks ago for a laughter workshop. I really do believe that laughing is the best medicine but at £8 per session, plus a trip across town in the evening to take part, sadly it will not be on my list of things to do.

apparently 'fake' laughing works just as well as real laughter as the body can't distinguish between them and releases endorphins into our blood stream anyway!

however it did get me thinking what could really get me chuckling my head off for free (or nearly free). my cat orla playing 'fetch' with me always works, joking with friends, watching the peep show or a really funny movie can do the trick.

please let me know whom or what makes you split your sides.

here is a very funny clip found by my friend emily (ta mate) to get us all chuckling away for free.......

autumn colours

i love autumn so i am enjoying taking part in autmn colour week over at poppytalk. every day is a different colour. today was orange day but i was a bit too poorly to go outside to take photos. i just took a wee pic of some orange wool (between naps) and posted that. if you have a blog or flickr photo site there is still time to take part!

finding gratitude again

i have weathered the storm and have been able to find gratitude again instead of just feeling sorry for myself. i am grateful for a sunny start to autumn here in glasgow and for being well enough to get to my allotment to see some beautiful flowers.

i am taking amitryptyline tablets for my fibro pain. have you been helped by them? or have you had bad side effects? i would love to hear about your experiences.

where has all the happy talk gone?

over the last few day's it has been hard to think any happy thoughts or talk any happy talk with me. yup, it's been a tough old week.

lots of oouch and zzzzz (achey and exhausted) with lot's of life's hurdles and challenges thrown in to boot. to top it all my computer broke down and i have lost thousands of photos that i was just about to back up incase anything ever happened to my computer! life just sucks sometimes eh?

so i will return with a new post soon, once i manage to crawl out from under the duvet. :-(

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.

specky four eyes

i have had to start wearing glasses. i will just need them mostly for watching tv etc for now but the optician says within a year my eyesight may be worse. is my eye problems simply down to age ( i have had good vision until my forties) or could it be another symptom of cfs/me? i sometimes have pain around my eyes, blurry vision and sensitivity to lights.

i think it is a bit of both.

the thing is i feel very lucky to have had perfect sight until now and to have found glasses i really love with pink legs!

why me?

welcome to my little blog! i have been living chronic fatigue/me/fibromyalgia for some time now. it seemed to start with a bad doze of flu just before christmas 07 that knocked me for six. i had to give up work and learn how to cope with this horrid beastie of a thing that has changed my life as i knew it.


the intention of this blog is not to just to have a constant moan about how awful it is living with a chronic illness. that would be easy! it is also to try and share with others how i find ways to cope and not feel so alone.


i would love to have comments from others affected with cfs/me or fibromyalgia who try to keep on the sunny side of life whilst so much is against them. what works for you? what helps? what keeps you smiling?