Lost luggage and lost health….body start behaving now….please?

8 Jul
Lost luggage and lost health. Photo credit mzacha via Morgue File

Lost luggage and lost health. Photo credit mzacha via Morgue File

It’s been a funny week here on planet Jess ME/CFS.

There have been some real highs, namely my sister arriving home from the US for her summer break. Lou arrived safely back at my parents in Lincolnshire on Tuesday. Unfortunately her suitcase was not so lucky, BA managed to leave that in Philadelphia. But all’s well that ends well, 5 days later it arrived by personal courier. It’s lucky that Lou and I are the same dress size, she has been able to raid my wardrobe for clothes in the absence of her own! But it would seem that accepting a free seat upgrade on a flight does not guarantee your luggage is given the same special treatment! I think Lou may stick with cattle class from now on!

On the other hand, there have also been some lows too. I have been utterly exhausted all week. My level of fatigue has been much worse than my usual. The myalgia pain has been really bad, both in my upper body, shoulders, neck and arms but also in my legs, especially in my calves and ankles. The upper body pain is old hat at this point. It’s been my main source of pain since the beginning of this fun ME/CFS ride. But the lower limb pain is relatively new. Or at least the current severity of the leg and ankle pain is new. It would not be an exaggeration to say that this week pretty much every single joint, muscle and tiny crevice of my body has hurt. My ankles feel like they have chains around them which are too tight and are squeezing my ankles so tight it hurts. My calves are heavy, achy and so sore. On Wednesday my upper body hurt so much it was a struggle to keep myself sat upright at the kitchen table. I just wanted to lie down over the table. The dizziness has been bad too. Heaven forbid that I change position, either from sitting to standing, or lying to sitting. Each time I do I experience moments of sheer dizziness and pressure in my head to the extent that I have to grab hold of something, anything, to balance myself. Even getting up off the toilet as evoked this reaction from my stupid body this week.

My ME/CFS addled body is clearly unhappy with me and rebelling at something. And to be honest I’m not entirely sure what the problem is. I acknowledge I did over do it last Sunday when I saw Liz but I don’t that is all that’s at work here. I think there are other gremlins working. I think there must be. I’ve done social things before, bigger and longer things than having lunch and spending the afternoon with one close friend, and not suffered to the same extent as I have this past week. Huh. Highly unimpressed with my body.

So what is going on? I really wish I had a definitive answer to this both for myself and for anyone else in a similar situation. But sadly I don’t. What I do have are a few ideas:

  • My period is overdue and I think perhaps that is sucking the life out of me, increasing the fatigue and the pain. I often have a couple of flare up days around my period but not to the extent of this past week.
  • Since discovering soluble fibre is an IBS aid, I’ve eaten way more carbs. They have all been gluten free of course but I’ve had bread everyday. And gosh it’s been good! If a ‘normal’ healthy person eats too many carbs, they can suffer fatigue.  I’m thinking the refined flours that make up so many shop bought gluten free bread products are having a fatiguing effect on my body. So out with the carbs! There’s no need for me to be eating so much bread. Carrots, beets, sweet potatoes and bananas can give me the soluble fibre dose my digestion and bowels seem to need to function at anything quicker than OAP tortoise going backwards pace.  I’m going to write a separate post about soluble fibre and update on my diet generally, so watch this space to find out more!
  • POTS, POTS, POTS. It is fairly recently that the dizziness, tachycardia and standing intolerance  has gotten so much worse (why? see my previous POTS post). The severity of these symptoms is still new to me and I’m still adjusting to what this means for my ‘normal’.
  • Stressing and wondering ‘why do I feel so bad’ just makes things worse. And of course, my mind has been going mad this week thinking and analyzing ‘well what have I done to cause this’. This post is me trying to cleanse my mind of all these thoughts. Write it down to acknowledge it and then forget and move on. Stress and worry exacerbates ME/CFS, we all know that!

As I say I think there is more than one gremlin at work here. I don’t think it’s any one particular thing that has pushed me into this flare. I think it’s the cumulative effect of all these things, and many others, that taken all together has just been too much. My body clearly thinks so, hence the Egypt sized rebellion it is hurling my way at the moment.

Oh well, what’s a girl to do? Rest and rest a little bit more I guess. Lucky for me it’s the Wimbledon Men’s final this afternoon. The perfect excuse to sit with my legs up inside on the sofa when it’s 25°C outside! Come on Murray!

Here’s hoping this week is better ME/CFS wise than last. If only my lost health would turn up like Lou’s suitcase did….Body, are you listening to me? Enough already. Start behaving now, PLEASE….


11 Responses to “Lost luggage and lost health….body start behaving now….please?”

  1. triciaruth July 8, 2013 at 11:42 am #

    I find that extremes of emotion can trigger symptoms as well as physical triggers. Mostly negative emotions but a big high might also do the same once you come down? Just a thought.

    • myjourneythrume July 8, 2013 at 2:08 pm #

      You’re so right, excitement can be as draining as stress or nerves. People often don’t appreciate that.

  2. thehomeschoolingdoctor July 8, 2013 at 12:46 pm #

    Five days of lost luggage! Ugh! Hang in there! Hope your body turns around soon.

  3. Linda Goodman July 8, 2013 at 4:16 pm #

    Sorry this is such a difficult time. Rest, meditate and be kind to yourself.

  4. currankentucky July 8, 2013 at 8:04 pm #

    Wishing you a better week. Every few months I find my body “gifts” me new symptoms as if testing my patience just that little bit more… why??? I have no idea… let’s “bring it on”!! And congrats to Murray!!

    • myjourneythrume July 8, 2013 at 9:07 pm #

      It was such an amazing tennis match! Thank you for the well wishes, today has been much better. I know exactly what you mean about your body testing your patience, I’m like you’ve tested me enough, I’ve stopped and am listening to you so stop it already! And yes I know my body can’t actually hear me…

  5. Jackie July 9, 2013 at 3:20 am #

    “Highly unimpressed with my body.” For some reason, this made me giggle. Maybe because it is so relatable?

    • myjourneythrume July 9, 2013 at 6:46 am #

      I think giggling is the way forward, it’s that or crying!


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