Back in Blighty and doing OK!

13 May
I'm doing ok, that deserves a smile.

I’m doing ok, that deserves a smile.

Mr B and I are now safely back in the UK. I had a wonderful time in Philly but I am so happy to be home. And you know what, I coped with the return flight, jet lag and travel surprisingly well. The very fact I am typing this post today is an achievement. I wasn’t up to typing just six days after arriving in Philly, but here I am today, six days after landing at Heathrow, typing away! (My post yesterday for ME / CFS awareness day was written prior to me leaving Philly). I have slept A LOT! The sleep has definitely helped. But I think also STOPs have helped too, and I have really paced myself and mostly just rested this week too.

Here’s how the last six days have been for me:

Tuesday – landed at Heathrow at 6am. Took melatonin as boarded flight and slept on and off for the whole 7 hours. Mr B commented how alert I seemed when we got off the plane, sadly it didn’t last long but hey even a few minutes of alertness is better than nothing! 2 hour taxi ride across London in rush hour to get home. Body hurt a lot when first home. Legs had seized up in the taxi. Slept for 2 hours in the afternoon. Managed to stay awake until 8.30pm. Took co-codamol as prevention but all in all felt better than expected. Mr B had to go to work as soon as we got home, he looked worse than I did by Tuesday evening!

Wednesday – slept for 14 hours! Wow. The most I’ve ever slept in one go ever I think! Very achy, took lots of co-codamol. Felt better than expected tho, no acute pain but after standing in shower to wash hair felt very achy and legs very weak, had to sit down. Short visit by friend and her beautiful new baby, very tired and sore throat. Falling asleep during rests. Played Bananagrams with my mum but after 15 minutes was shattered. Found it more difficult than ‘usual’ to concentrate on the letters. Bizarre dreams.

Thursday – Less aching, very tired but again surprisingly ok when not doing anything. Aching arms after a little computer. Aching legs after short walk (10 mins) around our apartment complex but no acute pain – yay! Sleeping through meditations. Temperature a bit crazy, swinging from hot to cold, cold to hot. Bad night sweats. Bizarre vivid dreams.

Friday – still very tired and still falling asleep in rests but body less achy, feeling bit stronger. Woke up drenched in sweat, horrible night sweats. No real sore throat despite Mr B’s sister visiting for dinner and me chatting more than normal. Headache tho from lunch time onwards, dull at first but by 9pm really acute despite co-codamol. On the Banangrams scale doing better – managed 20 minutes of play before fatigue overwhelmed me – progress!

Saturday – woke up ‘late’ – 9am. Headache still there. A little yoga and more co-codamol helped clear it for a little while but by evening really bad. Brain very foggy, forgetful, easily confused, lost for the right word. But managed my friend visiting with her lively (and totally adorable) 2 year old for a couple of hours before feeling utterly wiped.

Sunday – today – still early so see how I go. But head feels clearer and not aching more than normal writing this post. Slept til gone 8 am – 10 hours sleep – amazing!  Going to do some yoga and see how my body feels. It has been pretty stiff and sore all week, yoga is a good barometer for how I’m feeling, so we’ll see how that goes today.

But overall, I’m pretty happy – big smiley face all round! I have felt infinitely better this week after my flight home compared with how I felt the first week (and two) after arriving in the US. My first few days in Philly I was in a lot of pain even when doing very little, just lying on my sister’s couch. This week the pain has not been as acute and has only really spiked when I’ve done stuff that is clearly too much – such as washing my hair, going for a walk. So I think I’m doing ok!

Today I head north to my mum and dad’s for a few weeks to continue to rest and let my body recover from my trip. Back to strictly following my paced daily routine of yoga, reading, walks, blogging, light box, Banagrams etc. I also have a few new things to occupy my time with: I’m going to try the FODMAPs elimination diet over the next couple of months in the hope it will settle my IBS symptoms and in turn boost energy and improve my ME / CFS symptoms. Also my Dad (who used to be a journalist) is going to help me improve my photography skills with little tutorials, the evidence of which you will hopefully see on here soon!

Much more on FODMAPs, photography and lots of other ME / CFS related things to come on my blog in the days, weeks and months to come. But for now, it’s time for me to rest. Bye for now 🙂


9 Responses to “Back in Blighty and doing OK!”

  1. Reva May 15, 2013 at 10:25 am #

    I’d love to hear how you go on the FODMAP diet. My colleague is about to start working with the lady who made all of the breakthrough research and is giving me some help interpreting the research around linking it to ME/CFS.

    • tiredtechie May 15, 2013 at 10:59 pm #

      Well done! I was wondering about the FODMAPs too but haven’t tried the diet. I’ll tell you two things that have helped my IBS tremendously: minimizing lectins (plant defensive chemicals which irritate the intestines of animals–clever/nasty plants!) and chia seeds (and perhaps other mucilaginous foods would do as well). I can expound on these at further length if you like. Since doing these 2 things I’ve gone from losing weight (scary) to gaining weight and much less drama in the loo. My gut is also less reactive to things that used to cause intestinal meltdown. I still have to be careful but I have much more room for error now.

      • tiredtechie May 15, 2013 at 11:01 pm #

        Oh, and I have *more energy*. Not infinitely more but enough to make a real difference in what I can and can’t do.

      • myjourneythrume May 16, 2013 at 10:31 am #

        That’s great that your diet changes have made such a difference and to your energy too. I really think IBS isn’t a separate thing where ME / CFS is concerned but actually part of the ME / CFS symptoms. I wish doctors would start seeing that! I don’t know anything about lectins and mucilaginous food so would love to hear more. Though I definitely do not need to gain weight!

      • tiredtechie May 18, 2013 at 10:08 pm #

        I had IBS long before I got sick with ME but who knows there might be a connection. It certainly doesn’t help. Perhaps I’ll write something up about lectins & all the tricks to avoid them. Stay tuned…

    • myjourneythrume May 16, 2013 at 10:26 am #

      I will definitely let you know how FODMAP goes. I’m planning on starting the elimination diet next week. It has taken me a while to get my head around what you can and can’t eat on it. The hardest thing seems to be bread. Although I could eat gluten free bread (which I eat already) all the UK brands I’ve looked at so far have a hidden forbidden FODMAP in them. So I’m considering making (by which I mean my Mum will make…thanks to my lack of energy) some or it will be bread free for me for a a little while. I’d love to know more about the link between FODMAPs and ME, would you let me know what you find out? I was very happy to read that your new diet is going well and you’re seeing benefits from it.

  2. Hudders May 16, 2013 at 7:15 pm #

    I am pleased the visit of a 2 year old hasn’t knocked you too much! Train! X

    • myjourneythrume May 16, 2013 at 7:23 pm #

      Train! The two year old in question is far too cute to tire me out! She has also made me see the trains outside our window in a whole new light! X

    • myjourneythrume May 16, 2013 at 7:24 pm #

      P.s Hudders may become your nickname from now on!xx

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