I Want To …

**Mini Rant Alert**

Things I want to do but cannot do for various reasons relating to stupid M.E. despite them being semi-plausible…

Want to (in no particular order):

Have a bath, be clean & dressed everyday, eat whatever I fancy, exercise, sleep sleep sleep, go out somewhere for fun, get a haircut, earn some money, make some art, take my Holga out, meditate, have a chat, do a little housework, have sex, finish putting the front room curtains up, prune shrubs in the garden, lose weight, swallow my pride, diversify my work, do nothing whatsoever.

Not to mention the biggies that are less plausible right now…

Biggies (in no particular order either):

Care for myself, start driving again, be able to go out independently, get a job, buy a house, have a family, get fit. Be well.


There’s nothing like having a flare/crash/relapse (whatever this is) to get you thinking about all the things you can’t do.

It’s not proving very useful to plan what I could do if I felt better when I’m not feeling better.  But I can’t seem to switch those kind of thoughts off.  I’ve still not learnt now to deal with dips well it seems.  In fact it seems I’ve still not accepted I am even in a dip.



4 Responses to “I Want To …”

  1. 1 Cusp February 2, 2011 at 11:04 am

    Awww …sometimes its just relentless isnt it ? You need a big virtual (and non-virtual) hug (*)

    I can do some of the things on the first list but usally with payback…but at least I can do them. 18 months ago I was back in s*dding bed staring at ceilings wearing earplugs.

    The dips, relapses are so hard to bear and all you can do I think is give in to them….try to float along with them until you’re brought back to shore. Its very easy to say and very hard to do but I found meditation CDs helpful and breathing helpful….breath in for 7, out for 4 very slowly with tummy rising on breath in and vice versa.

    I know you must feel responsibility for the home and Growler but really he is very supportive and you don’t have other responsibilities to kids or animals so, if you can bear to, just try to go with it within that supportive environment and I’d hope that you’d recover again relatively soon. From your last post I imagine that the realisation that the 4 years is up and not much has changed is having a negative impact emotionally too. On the other hand you probably just feel like screaming at the moment and rattling the bars of your ‘cage’ :O)

    There’s nothing I can say or do to really change things but at least you know you are heard…and understood

    • 2 rachelcreative February 2, 2011 at 2:01 pm

      Thank you Cusp. I don’t feel quite so lonely, or quite so inclined to hide. Also that things aren’t all that bad really.

      I know this will pass with some patience and some rest. I’m just fed up of being sick at the moment I think. Thanks again. It’s good to be understood.

  2. 3 Dominique February 2, 2011 at 3:02 pm

    Rachel –

    I’m so sorry you are in a crash/relapse again. I’m there as well.

    I try not to think about it but the truth be told that is easier said than done.

    I have found with this relapse I’m really struggling with sitting still. It’s beginning to seem like it is all I do anymore. Sigh.

    But then I grab hold of my thoughts and remind myself I have a lot to be thankful for. And I list them to remind myself.

    I try not to go to what I can do or would like to do when I’m in a down mode. I find it makes me downtime longer because I am using up valuable energy.

    I agree with Cusp. I wish we all lived close by. Maybe we could then have overnight jammie parties. We could al lay around and talk, or listen, of veg, whatever we could do.

    I’ve often thought a ME/CFS jammie party would be pretty cool. We could all lay around together. Maybe doing it together wouldn’t be as hard as doing it alone?

    Sending you hugs and prayers. I hope you get to feeling better soon.

    • 4 rachelcreative February 3, 2011 at 9:13 am

      Thank you Dominique

      Sorry to hear you’re in relapse. That sucks.

      I realise that my crash/flare/relapse isn’t horribly bad in relative terms. I’m just very frustrated with it and have got used to feeling a bit better than this. I also haven’t got anything big to pin it on whereas before I’ve had a virus or something to blame.

      In so many ways I am very fortunate and yes I need to remind myself of that like you.

      Sitting still and quieting my mind is proving really difficult for me too. Rationally I know where I am needing to tweak things to rest properly but I’m not managing to do it – more to beat myself up about.

      Jammie parties would be good. Though I expect I would get over-excited and gossip myself into a squished heap!

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Push It 11 Sep 2011

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