My weekend away with Chronic Fatigue Sydrome

I had a pretty awesome weekend away last week. Not only did I get to see family members that I don’t get to see very often, but I got to attend the most beautiful wedding my of cousin Andrew – it was a magical day, it really was.

In light of that I thought I would write a bit about what it’s like for someone like me, who suffers from CFS/M.E, to go away for a weekend like this, and how I plan for it (and recover from it).

Side note: Andy and Ruth if you happen to read this, I was honoured to be at your wedding last week, and I don’t regret a single second of it. I’d do it again in a heart beat.

Weekend away? Not all fun and games.

People always think a weekend away is a fun and relaxing thing to do. You get to travel, you get time off work, you get to sight-see, and just generally have a good time. It’s a mini-break, a holiday right?

Wrong. When you have M.E, a weekend away, or even a week long holiday, needs careful planning. I often end up needing time off to recover from my time off. There are so many things to think about – having time to pack, travelling, what you will do while you’re there, how you will get enough rest, and whether you’ll need some time when you get back to get ready to return to real life.

It can be tough.

Travelling is one of the tough points for me as even the shortest journey can be quite full on for my body. My joints and muscles can get quite stiff being in a car for a long period of time, and this completely drains my energy. I usually arrive at my destination needing a nap – not really ideal for any holiday situation.

Last weekend we travelled up to Scarborough (or Scarbados as it will now be known), which is pretty far north. Luckily we could stop off at Will’s parents house in Lincolnshire on the way to break up the journey – but this meant our weekend away involved four days of travelling, 2 1/2 hours each day, which was insanely full on.

I decided I didn’t want to take the Friday off work as well which probably wasn’t the best decision in all honesty. So we travelled to Lincolnshire on the Friday after I’d finished work, and then to Scarbados on Saturday morning for the wedding at 12:30 (although we were an hour early!).

Then it was the wedding, which was awesome as I’ve already said. But it was 12 hours of moving around, socialising, and dancing (I never let me ME stop me from having a dance, which may be my downfall). It was a long day for me, and even though I enjoyed it there were many side effects that I am still recovering from now.

On the Sunday, we spent time with the family members who hadn’t travelled home already. We had a nice lunch and a walk, and it was so good to spend some more time with them all (and especially to see my Dad on fathers day which hasn’t happened for years). As much as I probably needed the rest, as I was falling asleep in my lunch, I wouldn’t have wanted to miss the chance to see everyone before beginning our two part journey home.

Travelling home.

Safe to say I fell asleep on both of our car journeys, and needed a nap and lots of rest to help me prepare for going back to work on Tuesday. In my previous role I probably would’ve booked the whole week off to recover. The last weekend we had like this I needed to and I still wasn’t very well when I went back – but my job was more physically demanding and I knew I wouldn’t be able to handle being in work after such a hectic weekend.

Now my job is very low intesity, and I didn’t feel I needed the extra time off work. Maybe one extra day would’ve been nice but I just went to bed earlier than normal each night and let myself sleep in a bit more (I work flexitime hours so I don’t need to be in work at a specific time).

I also knew I didn’t have anything planned this weekend so I could spend my time resting up over these two days as well – which I have done, and I’m starting to feel a bit more human as a result.

It takes a lot of planning.

Going away when you have a chronic illness can take a lot of preparation, and careful planning.

I have to decide how many days I will need to take off work to go away and then recover from it. I have to make sure I have enough time to rest each day if I need it, as well as do the things I want to do while I am away. I also have to make sure that even when I go back to work that I don’t have too much planned so my body can get itself back to normal.

It can be very stressful and overwhelming, but I think I’m used to it now! And as a result I AM able to attend important events and have weekends away.

My advice to anyone suffering with a similar illness is to just plan ahead, and listen to your body. When you need to rest, rest. If you need a nap, do it. And if you are doing something where you wont get the chance to do either of those things, schedule in time to rest on other days, when you can.