The Shape My Life Is In

IT’S …

laptop + wireless broadband (reading blogs, writing blogs,  email , social networking, some online shopping),

drawing, photography,

a bit of evening telly,

listening to family and chat,

holding my husbands hand, feelng him close to me,

smiles, giggles and belly laughs where possible,


washing every 2-3 days, bathing every 1-2 weeks,

taking meds, taking suppliments, drinking water,

sleeping 10 or so hours, staying in bed for half the awake hours,

being housebound normally 99% of the time (I actually did the math),

avoiding stress, keeping warm, being sensible, pacing,


watching my cat sleep/clean/fall over his own paws,

assisted wheelie walk once a month or so,

seeing a friend or relative every few weeks and the spark it brings me,

hearing (reading) friends and family and total strangers say lovely things,

the beauty in nature, seasons passing, skies for ever,


planning days and weeks ahead for routine exertions and everything not mentioned here,

wrestling with questions, acceptance, uncertainity, grief,

dealing with pain, exhaustion, aches, weakness, IBS, migraines, nausea, incapacity,

frustration at the missing stuff, things, doings, and all beyond my limits,

making resolutions that cannot be met,

reading about CFS/ME, research, sufferers views, government changes, media coverage and feeling confused, helpless, angry, inspired, militant and mixed up,

regular wide open holes in time as all things that I know are forgotten for a minute/hour/day or more,

a huge void where the stuff used to be, things not missed off the blog but not done anymore, a long list with books / games / exercise / cycling / working / chores / driving / independence / conversation / travel / sculpture / spontaneous doings / many more chunks of loved stuff now lost and too numerous to list,


life is good,

life is small but big enough,

loved and loving, not forgotten,

rewards found in the smallest of endeavours.


10 Responses to “The Shape My Life Is In”

  1. 1 jowynn November 21, 2007 at 4:46 pm

    Yeah, Rachel, me too. But I’ve had longer to get used to it. Congratulations on being able to make a good life under such difficult circumstances.


  2. 2 bbabe November 21, 2007 at 10:20 pm

    I like this blog entry. I think a lot of us folks with chronic illness can relate to this life.

  3. 3 Nina November 22, 2007 at 4:13 am

    That abt sums it up:-) I forgot to mention that I have more problems w insomnia when I’m doing cognitive stuff (like the computer) in the evening. Of course everyone is different.

    I really appreciate your ability w words. You’re very clear and accessible. That’s a gift:-)

  4. 4 Connie November 22, 2007 at 4:36 am

    Nice post that is what it’s really like to live with Chronic Illness. Glad you’re home and glad you’re posting again.

  5. 5 tammyrenee November 22, 2007 at 4:54 am

    Very cleverly written! You left out the part about sanity coming and going all hours of the day and night, he, he.

  6. 6 rachelcreative November 22, 2007 at 10:37 am

    Thanks for all your comments. I think the biggest danger is when I measure myself against other people, or against who I was before.

    It takes some skill to live in your own skin to the beat of your own drum. I admire each of you for the way you live with the challenges, or maybe that should be ‘in spite of the challenges’.

  7. 7 ama November 25, 2007 at 12:34 am

    life is small but big enough

    that’s the heart of it, isn’t it?

    writing on blogs has really expanded my life to where i feel i’m not missing out on people too much. that was the one thing i couldn’t really deal with too well. i could have seen lots of people, of course, but no energy, and how to hell do you explain it to them anyway? how do you say, it tires me to be with you? so you kind of let them go.

    but the internet allows its own pace, plus you choose who to hang out with… people who know… people who understand…

    i get worried about losing too much muscle tone, then i think, there will be better times.

    i get worried about its taking me days to go through a few pages of an article i’m reading, then think, who’s in a hurry?

    rock on, rachel.

  8. 8 shawna December 15, 2007 at 7:52 pm

    My daughter has been sick since 7th grade-now in 10th–is there anyone out there suffering at such a young age with these type of symptoms-it breaks my heart–what is the best thing you have done to deal with this lack of energy, loss of life???

  9. 9 rachelcreative December 16, 2007 at 10:20 am

    Hi Shawna

    So sorry to hear your daughter is sick and so young. There’s a UK based group who are focused on young people – I don’t know if there is one in the US. Here’s their link in case there’s useful things there for you both

    The best thing I have done (and my husband too) to deal with the lack of energy and loss of life (as you say) is to accept the life I have as valid, true and valuable.

    To try and stop measuring my life against other peoples and instead to go at my own pace, doing the things that make my life rewarding and feel good about that. It’s not always easy – there’s always things you can’t do. But I get a lot of support from my husband to maximise the energy I do have on rewarding things.

    I think support is really important. I use the forum . There are quite a few mums of young sufferers there and quite a few young people too. Mainly UK based but people from all over the world. Maybe there or somewhere similar might.

    Katrina Berne’s book “Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: A Comprehensive and Compassionate Guide” has a section specifically about children with ME/CFS. I found the guide very helpful personally with coming to terms with some of overwhelming emotional aspects of a chronic illness like this.

    Mainly it is allowing love to flourish and finding that happiness and personal reward can come from small and simple things. That I can DO very little but still be a whole person and still be loved and valuable to those around me, but perhaps in a different way to how most people are.

    Oh – and talking about it! Obviously as here I am yacking on 🙂 Important for you and your daughter and everyone around you if possible.

  10. 10 shawna December 16, 2007 at 2:11 pm

    thanks-you are doing something very special—God may have had that in mind–it’s pretty lonely out there in regards to the toll this illness has on both the old and young–bless you and keep strong!Shawna

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