The Fun of the Flare

15 Oct
My adopted cat. Photo by Jess B.

My adopted cat. Photo by Jess B.

By the end of last week I was beginning to see the light at the end of the dark flaring tunnel that I’d been trapped in for the previous ten days or more.

This not being my first time at the ME/CFS flare rodeo I was pleased to see that my body was slowly progressing through the stages of the flare.

First comes love, then comes marriage and then comes a baby in a baby carriage. Oh wait. No. That’s not the stages of a flare but the (much hoped for) stages of life. No. The stages of an ME/CFS flare in my experience go something like this:

  1. Do too much / catch virus / push self too hard / ignore body’s warning signs etc.
  2. Slightly more fatigued than usual. A bit achier than my ME/CFS usual. Lulls me into false sense of security that I am actually not doing too bad / that I coped amazingly well with activity / happening at (1). Tends to last for a couple of days until…
  3. ….All hell breaks loose. Acute acute acute pain in joints and muscles. Pain 24/7 regardless of doing nothing. Ankles throb before I even set foot on the floor in the mornings. Pain everywhere. In every joint, muscle, socket, crevice, nook and cranny of my dilapidated body. Lots of tears.
  4. Acuteness of pain subsides leaving in its wake heavy, aching, weak muscles which suck every last ounce of energy out of my being. Still tearful.
  5. Achiness begins to lighten as day wares on but still bad in the mornings. As the achiness reduces (from dead weight feeling to duller ache) the fatigue ramps up.
  6. Sleep. My body craves sleep. But decides that it will wake up ridiculously early just for fun. Oh and there’ll be some night sweats and vivid dreams too (ask Mr B about my random talking in my sleep when things are really pear shaped).
  7. In addition to the sheer physical exhaustion there is now a veil of sleepiness. I struggle to keep my eyes open. Each and every time I pop my headphones on and lay down with a relaxation track or meditation. Bam! I’m asleep. Waking up an hour plus later several tracks through my playlist with the horrendous grogginess that accompanies day time napping. Eurgggh.
  8. Dizziness and headaches join the party as the sleepiness abates.
  9. Feel noticeably better for moments during the day.
  10. Feel noticeably better for more moments; for a matter of minutes rather than seconds. Slowly slowly recovering.
  11. Feel well enough to do more again. Enter Danger Zone.
  12. Somehow, gradually, things keep improving until, as if by magic, I’m back to my limited energy, exhausted, achy ‘usual’ levels of ME/CFS fun. Welcome to my normal.
Our walking patch. Photo by Jess B.

Our walking patch. Photo by Jess B.

It’s always nice and a gigantic relief to feel noticeably better during a flare; to ‘just’ have ME/CFS again and not be flaring. To begin to be able to resume my normal levels of activity i.e. to spend only half the day horizontal rather than virtually all of it.

But it’s when the relief kicks in that we have to be extra wary. This is the Danger Zone. This is when we have to be super careful and profoundly patient. We have to wait and walk before we can run. We mustn’t push ourselves too far or too fast too soon. None of these traits come easily or naturally to me. But I do my best to listen to my body and follow its lessons at these times because the consequences of doing too much too soon are just too ghastly. Back to stage 1 of the flare. Or worse still, back to stage 1 of an even deeper, harsher, more severe and longer lasting flare. No thank you.

View from my bench by the fish pond. Photo by Jess B.

View from my bench by the fish pond. Photo by Jess B.

After over a week inside my apartment with the most fresh air being a few minutes hanging my head out of our window, I was crawling the walls (figuratively speaking, didn’t have the energy to do it in real life. IF ONLY).

So I ventured outside. Not straying far. Staying safely inside the gates of our complex; slowly taking a few steps in the communal gardens to then sit down on a bench and stroke one of the resident cats. Another day, I walked around and around one of the grass areas with my friend who needed to keep moving, pushing her pram to keep her little daughter asleep.

Progress, going out of the gates! Photo source: http://www.krupskayabooks.com/wildfire/tourist.html

Progress, going out of the complex’ front gates! Photo source: http://www.krupskayabooks.com

And then came the day late last week when I felt ready to venture outside of our complex’s gates. How exciting!! Not really, I only walked for 4 minutes (thanks to my trusty timer) before I turned back but at least I was out! I tried to walk mindfully and slowly. I focused on just putting one foot in front of the other. The traffic noise on our street seemed blaringly loud to my poor ears. And it was cold. During my flare induced hibernation Indian Summer had very much been replaced with an Autumnal chill. Refreshing yes. Others might call it bracing. I just wished I’d got gloves and a scarf.

Very quickly I was experiencing shooting pains in my upper back from the sheer effort of keeping myself up right. My shoulders ached. I felt exhausted. My eyes felt so tired and I couldn’t stop yawning. My arm ached from carrying my water bottle (not a 5 litre extra heavy one I hasten to add, less than 500 ml). I turned back and trudged back to the aforementioned gates. Even with wearing my compression stockings my ankles were tingling and my calves were heavy. My knuckles were throbbing.

I was very grateful to make it home and back to my trusty sofa. Guess what I did? I laid down with my headphones and relaxation track playing and yep fell asleep. Just as I had done an hour or so earlier in preparation for going for my walk. Yes an 8 minute walk required an hours nap as both pre walk prep and post walk recovery. Lets face it, I won’t be walking any marathons anytime soon!

But at least I made it out of the gates! That’s progress. Baby steps all the way.

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17 Responses to “The Fun of the Flare”

  1. Claire October 15, 2013 at 10:58 am #

    baby steps, we’ll all get there xx

  2. Jumping_Jenny_444 October 15, 2013 at 11:43 am #

    Yes, baby steps is the name of the game. I’m still working on that one–sometimes I still get in the habit of jumping all the way from A to Z! πŸ˜‰ I’m glad you’re making progress and may you continue to feel more and more better each day.
    Jenn xx

    • myjourneythrume October 15, 2013 at 6:18 pm #

      Thank you Jenn. I also often have to stop myself from going straight to Z! Jxx

      • Jumping_Jenny_444 October 15, 2013 at 9:57 pm #

        Thank you for bringing the Rice Krispies thing to my attention. I feel bad for writing that post without doing any research. Does that make me look like a jerk or what? πŸ˜‰

      • myjourneythrume October 16, 2013 at 5:47 pm #

        Don’t feel bad. It doesn’t make you look like a jerk at all. It just goes to show how bad these food companies are. Who would have thought there’d be gluten in rice krispies? They’re crisped rice for goodness sake!

  3. Michelle October 15, 2013 at 2:40 pm #

    I’m so sorry you’re having a hard time. pacing your self is always a good idea. have you tried doing a relaxing detox bath and listening to relaxing/meditation music when you are achy? http://trynabpainfreemomma.wordpress.com/2013/09/02/a-detox-bath/ Make sure you drink a glass of cold water while you are in the tub so you are not light headed when you get out.

    • myjourneythrume October 15, 2013 at 6:17 pm #

      I love Epsom salts! I’ve just bought a giant bag of them from amazon! Thank you for your thoughtful comment and drinking water is a good reminder, I tend to forget that and am often light headed.

  4. Hayley-Eszti October 15, 2013 at 8:33 pm #

    Glad you are seeing the light at the end of this flare, I’m currently just coming out of one myself. Those breaths of fresh air after you have been inside for a while are just great aren’t they! xx

    • myjourneythrume October 16, 2013 at 5:48 pm #

      They are so great! Such a relief to breathe fresh air again. Hope you are doing ‘well’ (all things being relative…) Hayley xx

  5. Trisha October 16, 2013 at 3:20 am #

    I am glad to hear you’re seeing the light at the end of the flare. I always feel so relieved when the flare symptoms start to abate. I’ve been through the flare/recover cycle so many times but, when I’m in the middle of a flare, I always fear that I will feel that terrible forever. And then I go and do too much and end up right back in a flare again. It seems like resting should be an easy thing but it’s definitely not!

    • myjourneythrume October 16, 2013 at 5:45 pm #

      I know that fear all to well. When you feel so bad it’s so difficult to imagine feeling better. Resting is definitely not easy!

  6. BONNIE JOHNSON October 16, 2013 at 7:52 am #

    OH, JESS, BLESS YOU!! I LOVE YOUR WALKING PATH–BEAUTIFUL AREA!!

  7. dawnhosking October 16, 2013 at 8:46 pm #

    Slow and steady wins the race, I hope you are feeling much better and can fully relate to what you describe. Take good care of yourself xx

    • myjourneythrume October 17, 2013 at 2:48 pm #

      Thank you Dawn and hope you’re doing the same for yourself xx

Trackbacks/Pingbacks

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    […] with mini- breaks to Sussex and flu jab shenanigans resulting in my enforced rest and hibernation, I haven’t managed to get round to writing up how my review appointment went with my […]

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