Lessons learnt from a weekend away with M.E./C.F.S.

14 Feb
View from our cabin. Photo by Jess B.

Early morning view from our cabin. Photo by Jess B.

So mine and Mr B’s mini break away to celebrate our anniversary is sadly over. He is back at work in London and I’m back at my folks’ in Lincolnshire (this is how it’s been for most of the last year or so since I got too sick to work, I seem to progress quicker up here – definitely not ideal when you’re 28 but that’s a story for a different day).

There’s good and bad to report on our time away.

First let’s talk about the good stuff! We had a wonderful few days away staying in a luxury log cabin at a spa hotel. The cabin had everything you could possibly need for a relaxing break even including its own whirlpool jacuzzi bath tub and sauna! It had stunning views out over the rolling countryside (pic above is evidence enough of this I hope).

Our country walk.  Photo by Jess B.

Our country walk. Photo by Jess B.

We spent our days lazing about watching DVDs and reading and of course using our whirlpool tub and sauna. We went for nice gentle walks in the woods (for a whole 24 minutes!- that’s what I’m up to with pacing) enjoying the crisp winter sun. Mr B used the spa’s gym whilst I sat in the cafe reading a yoga magazine sipping green tea. Mr B cooked us a gorgeous supper one evening of salmon with pesto crumb (recipe to appear on here soon) and on our last night, on  what was our anniversary itself, we went out for dinner to the highly acclaimed The Chequers Inn. The food was excellent, as these pics clearly show!

Scallops with parsnip purée. Photo by Jess B.

Scallops with parsnip purée. Photo by Jess B.

Chicken with chorizo and red wine jus.

Chicken with chorizo and red wine jus. Photo by Jess B.

For anyone ever in the area I highly recommend The Chequers Inn. They didn’t bat an eye lid when I mentioned gluten and dairy free and my starter of scallops with parsnip purée and main of chicken with chorizo and red wine jus came straight off the menu without any substitutions necessary and were absolutely delicious.

All in all it was wonderful and so good to have some time away just the two of us. I was very sad to leave.

 This is sadly where the bad creeps in….

I’ve spent the last few days since getting back feeling utterly awful. The first day back at my parents’ I was just plain exhausted and kept falling asleep during the day. I literally couldn’t keep my eyes open. The next day I wasn’t so sleepy but still exhausted (that sense of being physically exhausted, if you know what I mean) and the myalgia pain in my arms, legs, neck and shoulders was unbearable. I even took painkillers to try and numb the pain. Mum had to wash my hair for me over the bath as I wasn’t up to doing it myself, something I thought I’d moved way beyond.

Today, my fourth day home and I actually feel human (by ME/CFS standards) again. Yay! 🙂

It’s so frustrating because I really thought we’d taken enough measures to prevent any kind of after effect from the trip….apparently not. But speaking more positively, perhaps the things I did do helped me not to suffer even worse after effects! See there’s always a silver lining….

As I say I did take steps both before going and whilst away to try to protect myself from any kind of negative consequences. Here are some of my precautionary measures:

  • Before going I gradually did my packing and sorting out for the trip over a week or so, I didn’t push myself and do it quickly or have to rush about on the morning of going.
  • Although I did have a glass or two of Prosecco (who wants to celebrate with a glass of water?!), it was heavily diluted with orange juice which, incidentally, made a very nice bucks fizz. Literally two glasses of Prosecco with OJ one night and a Kir Royal (my all time favorite drink) the last night, that was all. Honestly you’d think I’d gone out and got obliterated on tequila shots the way my body has responded!
  • The hotel we went to is only about an hour’s drive from my folks’ place. We deliberately chose this place because it was close so I wouldn’t be drained by lots of travelling.
  • There was no anxiety about the hotel as we had stayed there before (for all of the same reasons we went there for our 2012 anniversary)
  • Mr B drove us there, I dozed.
  • Mr  B cooked us dinner (despite me itching to do it as I love cooking, and I’ll be honest, I am ‘bit’ of a back seat cook!)
  • I did my gentle yoga practice each morning.
  • I stuck to my current pacing limits and didn’t push myself with long walks or swimming loads (I slowly swam two lengths and then sat in the Jacuzzi).
  • I didn’t read for longer than my current pacing limit (20 minutes) and I did set my timer to make me stop, as I do when I’m at home (I’m so cool!).
  • I did go in the sauna, despite knowing excess heat can quickly drain a person with ME/CFS but it was literally for a minute and only twice (warm shower, in sauna, warm shower, in sauna, warm shower, stop).
  • I rested with relaxation tracks and meditations as often as I do when I’m at home.
  • We were in bed lights off and ready to sleep by 10.30pm each night, both of us tired out!

So you see I did do lots of stuff to help avoid any kind of post trip crash. But apparently my body didn’t agree. I’m beginning to think my body is stupid…

Despite this, I am most definitely NOT saying that these steps were all in vain and that I’d recommend not doing them, NO,NO,NO. I think they helped me not to crash during the trip and meant the after effects were not as bad as they could have been.

So what caused the after effects then? I think it was combination of things:

  • The unconscious anxiety before going about how I’d cope with the trip and unconscious anxiety whilst I was away about how I was coping (anxiety means stress on our nervous systems which triggers even more adrenaline to be pumped round an already highly stressed ME/CFS nervous system which increases the physical symptoms – much much more on the role of stress in ME/CFS in future posts);
  • the excitement of being away;
  • being somewhere different;
  • eating a bit less healthy than normal;
  • having a little alcohol;
  • doing different things (swimming, sauna etc), different bed etc.
  • And on the last day I had been pretty tired (more than my ‘normal’) all day but stubbornly I insisted on going out for dinner, despite Mr B saying he’d cook again (he’s so understanding not sure what I’ve done to deserve it!). So perhaps going out with all it entailed, getting dressed up, make up, styling my hair etc, meant that going out for dinner was a step too far.
Kir Royal Love! Photo by Jess B.

Kir Royal Love! Photo by Jess B.

Who knows what caused my crash, the above are just some possibilities.  But I’ve learnt one lesson for sure, next time I will listen to my body and if I’m feeling tired we’ll stay in and I’ll stay in my sweatpants with frizzy hair, no make up and let Mr B cook or order take away!

This has turned into a bit of an epic blog length. Sorry about that. I shall stop now so I don’t exhaust myself and you don’t get too tired reading it!

 Bye for now. Jx

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