Welcome to M.E. Myself and I, a series where I
Well hello there!
Does anyone else feel as if they blinked sometime around Feb 20th and suddenly we were halfway through March, or is it just me?
The last few weeks have been somewhat of a whirlwind for me. One of my very best and dearest friends announced that she was betrothed, another of my closest and most wonderful pals got a new job she'd been after for eons, I went to see arguably the best theatrical production you can see at the moment (and for those wondering how we got tickets - I spent a morning frantically chasing them about a year ago and it was worth every stressful hour on Ticketmaster!)... and I found out that I have 'too much pressure' in my head.
Yes, you read that right. Too much pressure. And not just the emotional/mental pressure that my anxiety and society have been putting on me for the past 25 years, but actual physical pressure from something that is, to paint you a lovely picture, pressing on the back of my eyeballs.
At the moment that's pretty much all of the information I have and am waiting to have a delightful sounding procedure called a Lumbar Puncture to proceed, but I think you can probably understand why I've been a bit quiet round these parts lately.
However, let's rewind just a little bit. Surprisingly, this post is not about the latest twist in the never-ending horror-themed Choose Your Own Adventure book that is my physical health - it's about travelling. And how did I get from my safe little nest in Cardiff to the Victoria Palace Theatre in London to see Hamilton?
I travelled, duh.
Since being diagnosed with CFS, I've been on two proper trips where I've stayed away from home in a completely new place (I'm not counting things like trips to parents' houses) - London, last week, and San Francisco, last Autumn (read more about that trip here.) In the time in between the two trips I feel like I have learned a lot not only about CFS in general but also about the things that help me personally manage my symptoms, and I got to thinking about what Now Me would suggest to Past Me about what works - and what doesn't - when you're trying to be an explorer with CFS.
One of the hardest things to wrap your head around when dealing with CFS - whether you're the sufferer or just a kindly passerby taking an interest - is the idea that there is more than one kind of energy. And I'm not talking about the sort of energy that people who read a lot of The Numinous (*cough* me *cough*) and are into crystals might want to explain to you in excruciating detail (me to my boyfriend in January when I was convincing him to let me sage the house: "I just feel like I've been spending a lot of time in here and that I'm letting all of my bad vibes clog it up! But I need you to do the corners because I read that that's where it tends to gather the most.")
No, the energies I'm talking about are on a much more physical level. Let me try to explain (and remember, like I said above, I am no doctor/scientist/even a particularly functioning human and these are all based off my own personal experiences and observations):
- Physical Energy | this is the one we all think about as just plain old vanilla 'energy', in my opinion. This is what you're depleting when you go to the gym or you're on your feet all day at work or running around doing errands
- Mental Energy | you know that feeling of utter exhaustion that you get after a difficult day in the office, or if you've been studying something for a long time and you feel like your brain is melting out of your ears and you're liable to burst into tears/throw a fit if someone asks you to use your cognitive skills for even the simplest of tasks like deciding what you want for dinner? That is your mental energy, my friend
- Emotional Energy | this is similar to - but not exactly the same as - mental energy. This one is less about how much you've been using your little grey cells, mon amie, and more about how you've been feeling. If you've ever been heartbroken or lost someone then you'll know what it's like to be completely drained of emotional energy, but you can also have peaks and pits of it throughout your every day life without going to these extremes. Having a tiff with a loved one, having to apologise (perhaps for the fact that you got into that tiff), making a difficult decision that you know is going to affect either you or someone you care about - all of these can sap our emotional energy
- Sense Energy | Ok, this one is a bit harder to explain, but it's sort of... a mixture of the above three? If you've ever been in a situation where you feel completely overwhelmed for no tangible reason - for example, you're sitting alone in a busy place not really doing anything (so your physical, mental and emotional energies are all doing fine), but you still feel totally exhausted by the situation... that's over-stimulation. Some people are obviously more susceptible to this than others (one of the fun side-effects of my personal anxiety issues is a touch of claustrophobia in crowds, which I've been working on for years), but I think we've probably all had this at one time or another. The stimulus could be anything - lots of people, lots of noise, lots of traffic... lots of anything, really. The point is that one or more of your senses is being totally overloaded and your body is going NOPE
Why am I going into all of these different kinds of energy? Because when you have CFS - or really, any condition that restricts how much energy you can expend - knowing the different things that can tire you out becomes very, very important.
And while knowing these triggers (or whatever you want to call them) is important just in general, it becomes even more so when you need to go out of your comfort zone for a prolonged period of time.
What your comfort zone looks like will depend greatly on what level of severity your CFS (or similar) is at. For example, if your CFS is mild enough that you can still go about your daily life mostly unencumbered, then your comfort zone might be your routine - getting up every day at the same time, going to work, your commute, down time in the evenings etc. etc.. If you have more severe CFS, then your comfort zone might be as acute as your bed. For me, my comfort zone at the moment pretty much starts and ends at the borders of my house and garden, and any time that I have to go outside of it - to see the GP, to walk the dog, even just to nip to the corner shop, I'm opening myself to more stimuli on all energy fronts than I'm used to. In my house, if I need some peace and quiet I can get that easily, but in the doctor's waiting room I don't have any control over whether or not the toddler in the corner is going to press the button on the singing farm animals toy over and over and over again for fifteen minutes straight, so I need to be able to take precautions that stop my sense energy supply from completely dissipating and taking the rest of my mental, emotional and physical energy with it.
Because oh yeah, I forgot to mention: healthy people might be able to control all four energy supplies separately, but when you have CFS it's all for one and one for all
 |
| NB: I was hoping to find a gif from this show, to no avail... but please let me know in the comments if you also remember the adventures of Albert the Fifth Musketeer! |
Most of the time, unfortunately, these precautions come in the shape of heading back to my house/comfort zone ASAP and taking the time to recharge there, in whatever shape or form that may take. However - and here is where we finally get to the meat of this post, only a thousand or so words in - when you're travelling, you can't retreat to your comfort zone. Because the nature of travelling is that you have left that zone, in order to do or see or experience new and different things. Which is why we do it.
- Accept that you won't be able to stick to your schedule | confession time: I had planned to write about pacing/scheduling your way through CFS before I wrote this post, but my aforementioned whirlwind of 'what?!' when it came to health threw me both off my writing groove and off my schedule, and I'm still trying to get myself back into it now so it felt unhelpful of me to try and share my thoughts and findings on that in an informative way when I'm not quite sure of it myself at the moment. However, I can say without a doubt that:
a. having a schedule, with set times for rest and different levels of energy, has helped me tenfold in getting through the days with CFS, and
b. you cannot expect to stick to a schedule when you're away from home.
I'm sorry, you just... can't. It isn't feasible. The magic of the comfort zone - indeed, the thing that makes it so damn comfy - is that you have full control over everything, from how warm/cool you are, to when you eat, to whether or not it's acceptable to have a midday nap. However, when you're out in the big wide world you (probably) won't be able to have control over some - or any - of these things. As far as I've found, you have two options here:
a. Make a holiday schedule | this is sort of what I did in SF. You can do this before you go (which is probably sensible, to avoid boom and bust), or while you're there (if you're experiencing boom and bust). For example: in SF, I would get up at about 7 or 8, have breakfast, get ready, and we would aim to be out of the flat by 9 or 10. We would then have a couple of hours of doing something touristy, get lunch, and be back at the flat by 1 or 2, and I would take a couple of hours to nap/rest before we went out again to do something else around 3 or 4, and be back by 6ish to have dinner - or:
b. Only schedule in what's most important | this is the approach I took last week, on my three-day sojourn to London. We didn't have a lot planned, but I knew the rough idea of what we would be doing each day and I also knew that I would need plenty of rests throughout to keep me going. So, I made sure that I always knew when I would be able to stop next - usually in coffee shops, admittedly, and we had slow mornings both days so that I could power up for the day ahead
- Implement the buddy system | I went to SF with my boyfriend, and London with one of my best friends. Both of them know all of the ups and downs of my CFS journey, but even so before we left for either trip I let them both know the following:
a. that I wouldn't be able to go at the same pace as them without burning myself out
b. that I therefore didn't mind if there was something they really wanted to do and had to leave me behind somewhere in order for them to do it (for example, in SF A went on lots of runs and explorations of his own while I was having my afternoonly rest - which worked for both of us as it meant he got to do things at his own pace and I didn't feel bad about making him hang around while I slept)
c. what, exactly, tires me out - AKA, the energy stuff that I talked about before (yes, that did have a point!); I explained that it wouldn't just be doing things like a lot of walking or getting on the tube etc. that would be draining for me, but that it's everything else, too. Just being in a big city like London or SF is a lot when you're used to spending most of your time in a terraced house with mainly a dog and some guinea pigs for company. Hell, just going into the centre of Cardiff can be exhausting for me nowadays and that used to be a daily activity
and finally, d. that I was very, very, extra, super grateful to them for accepting my limitations and still wanted to go somewhere with me
For me, explaining all of this stuff in advance took away any anxiety I had about slowing my travel companions down or annoying them with constant requests to "stop for just one minute?" (as I write this I'm also realising that it's basically the entire 'managing expectations' section of the project management course I took last year, too, so... I guess that was helpful?)
- Designate a new comfort zone | AKA, make sure you have a space you can go to to recharge free of all stimuli. I've been Airbnb-ing for pretty much every holiday I've been on now for about three years, because 1. the places are almost always beautifully presented (admittedly, this may be more to do with the choices I make) and 2. it means that you have full control over a little portion of your trip. Staying in a hotel might feel glamorous, but unless you're willing to eat in your room for every meal you have to go to public spaces for at least one meal a day, which means adding unnecessary stimulus. Equally, staying in a hotel or hostel can mean that you're either sharing a room with people you don't know or at the very least in a place where there are lots of other rooms around you and there's a chance that some of them could be noisy or in some way disturb you (admittedly this might be my anxiety talking, again, because I always feel hyper aware of other people when I stay in hotels and often have to sleep in my headphones because I'm a crazy person.)
- In my experience though, because Airbnb's are primarily in more residential areas you get it tends to be a bit quieter, plus you can be a bit more flexible on location. In both SF and London we chose to stay in places that were convenient for transport but also out of the city centres and in quieter areas, so that when we were we could actually get some peace and quiet. With this option you do have to make the compromise of making sure you'll have supplies in, though, which means that you need to...
 |
| Our cosy Airbnb in a converted coach house just outside of London |
- Plan | this one is pretty obvious, and it's really something you should do in general when you're going away. However, you may need to up your level of planning if you're travelling with CFS. For example, I left booking my transport to London until too late and ended up getting the coach from Cardiff instead of the train, because I would have had to take out a second mortgage in order to buy the train ticket. BIG MISTAKE. Trains may not be the most reliable in the UK, but they do at least usually make it from A to B without too much trouble. Coaches, however, are the work of Satan. Neither journey ran to time, and on my way there I ended up at Heathrow instead of Victoria because our driver ran out of driving time and I ended up getting the tube in instead because it was that or wait around for another coach to arrive that 'might' have a seat for me.
The things I did plan for in advance, however, went well. We had figured out a rough plan for our days, we knew the key things we wanted to see and do and we knew when we were going to see and do them. Nobody (I hope) was left feeling that they hadn't done enough, or that they hadn't got to do something they wanted to do, and the main source of my exhaustion at the end of the trip was the bloody coaches.
Which brings me to my next mini-point: don't just plan your trip; plan for the aftermath, too. If you have CFS, you know that any deviation from your normal routine will result in a deficit of energy. Even if you plan to the minute, pick the most perfect comfort zone, take a certified expert in chronic fatigue along as your buddy and come up with a dazzling schedule full of rest and recuperation, being away from your normal life will tire you out. It does for healthy people, too! Everyone's heard someone say something along the lines of "I need a holiday to recover from my holiday." Our fragile, squishy human bodies need time to get over new things. And if your body is extra fragile and squishy, then you need to plan for extra time to let it reset and recharge. I got home from London exactly a week ago today and I'm still finding that I have to go at a reduced pace to what I was before to make up for it - so I had basically nothing planned for this week, or last weekend, in order to give myself lots of time to do that without feeling guilty/stressed about having to cancel plans.
And those, dear readers are my tips for travelling when you have CFS. I know that they might not be groundbreaking, but I hope that they are at least helpful. And like I said, I've only taken them with me twice since diagnosis, so if you have more experience and have some more tips to help me and others out, please leave them in the comments so that if and when I get around to organising my third CFS trip I'll be even more ready for it.
Over and out x
