I’ve just come back from a week in Sardinia. It was a 50th Birthday present from family and we decided we wanted sun and relaxation as a priority.
I’m very lucky in that the majority of my symptoms are triggered by cognitive activity so going away for a week without computers, spreadsheets, paperwork and television is ideal for me. I can play to my strengths which is basically physical activity and so I get to enjoy walking and swimming in the sea. So many of the everyday symptoms that are triggered by everyday activity just aren’t there.
However I definitely don’t leave the CFS/ME at home. It comes with me in my hand luggage. I am very aware that whilst some symptoms might be less or even gone, my body is in a certain state that makes things unpredictable.
In 2014 and again in 2016 we went to California. On our first holiday I can remember feeling pretty good with few symptoms and it was partly the desire to replicate that which led to us booking the second trip. However the second trip wasn’t quite so easy. I guess my CFS had moved on a bit but things that I had dealt with ok the first time became more of an issue.The 11 hour plane flight along with the wait at immigration floored me really badly and it took a good while for me to get over it. Probably as a result of this I developed vertigo which just wasn’t pleasant and lasted for about a week. The heat impacted on me more this time too (- or maybe it was just hotter) and I developed a delightful heat rash all over my arms. Generally I just didn’t feel as invincible as I had on our first trip. Sleep wasn’t as good and my energy levels were lower. Don’t get me wrong we still had an amazing time and we made sure that we built in more rest days to enable me to get my energy levels sorted. But it was proof that when you go away with a condition like CFS nothing is guaranteed.
This time in Sardinia it was also really hot and for the first 2 or 3 days my system just felt wired and pretty unsafe in the heat. I’d been pretty wired before we left anyway so things had further to go to drop back down to normal. Feeling like this impacted on sleep again and also meant that activity that felt doable physically, sometimes stopped being doable when my nervous system started shouting at me. But by about day 4 things had calmed down a lot. We found some amazing peaceful beaches and just swimming in the sea really helped to get my nervous system back on track. Sleep wasn’t great all week to be honest but the demands that I was making on my body were different. Back home I still try to carry on with normal things even when I’ve had a run of a few bad nights which inevitably leads to headaches, muscular and facial tension, sore eyes, dodgy vision and tinnitus. Whilst we were away the only cognitive activity I was doing was a bit of light reading and trying to decide whether to have croissant, cake or both for breakfast!
So yes I do have to confess my nutrition protocol pretty much went out of the window too. Being a vegetarian and gluten free is not easy whilst abroad and I decided to ditch the gluten free aspect in favour of making sure that I ate good meals with enough protein. Whenever possible I did choose gluten free options but I also ate pizza and pasta along with a rather gorgeous selection of cake for breakfast (balanced with protein in the form of egg and cheese). Plus I drank wine and the odd G&T. It felt like it was part of the package. Part of me giving myself a week off working at my recovery. The biggest fall out of this was incredibly achy joints which I assume was inflammation from the gluten and increased sugar along with maybe the increase in cheese too. Since I’ve been home I’m back to gluten free and have reduced dairy and sugar right back down too so things are feeling happier.
I guess what I’m saying is if it’s physically and financially possible for you to go away then do it. The fear that your body will malfunction whilst you’re away is valid and a reality. It may well and you may have little control over this. Some symptoms might flare up or new ones might emerge. But if you prevent yourself from doing things that can also potentially provide you with calm, change of scene, fresh air and a little bit of fun then you are giving in to your own fears and creating a ‘what if’ thought pattern that you’ll just keep returning to. Go away but take your own tool box with you. Think about the things that work at home to calm you down. If you’re flying seriously consider asking for airport assistance or at least inquiring about being able to sit whilst in queues. It was suggested to me before our second US trip and I really wish I’d done it. Take your supplements and try to stick to taking them each day. Build in rest days. Avoid busy places. And stay out of the sun during the hottest times of the day. The Italians have an afternoon siesta for a reason! Sadly you can’t leave your CFS/ME at Passport Control so if you try to replicate the holidays that you had pre CFS/ME it may not end well. . But you can tone it down so that it’s workable for you as you are now.
Coming home I feel so much calmer. I’m back on my laptop getting ready to start baking again next week and I’m finding that the symptoms aren’t kicking in quite so quickly. I’ve also made a few changes since being home. I’m following my nutrition protocol more carefully. Less TV in the evening in an attempt to help my sleep. More reading in short bursts through the day. Plus getting outside and walking as much as possible. Sometimes it’s just about rebooting your system. Reminding yourself what’s good and what’s holding you back. And that change of scene, change of pace and change of mindset. A week away gave me an insight into how I can feel and it’s reminded me how badly I want to feel like that more often. It’s upped my commitment and pointed me back in the direction of all the things that I know help me but sometimes get forgotten day to day.