The ME/CFS five year anniversary roadshow

Being fatME/CFSTravels

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I’m currently living out of a Tarago that has been converted into a campervan, hopping around the small towns near Byron Bay. I booked a holiday up here after getting cheap flights to Brissy, and as I mentioned in my last post, felt like I was in desperate need of a break. This week is also the five year mark of living with ME/CFS, so I wanted to get away because I knew I would be a bit depressed. To be honest, I have been a bit depressed and burnt out for the last month or so, so I didn’t manage to thwart it through distraction, but hey was worth a shot?

I’m glad I got away though. The weather is nice, the beaches and landscapes scenic. It’s good to turn off the part of my brain that is always thinking about work. The campervan mattress is far too thin for an obese person with chronic pain problems, but other than that the van life is not bad. This part of the world is littered with cafes so I have just been dining out rather than firing up the little gas cooktop in the boot or using the BBQs at the holiday park. Staying in the campervan is significantly cheaper than staying in hotels and hiring a car, which I would have needed to do to explore anyway, so it’s a decent compromise (except for the mattress). Also we had two Taragos growing up, so driving a family van everywhere feels very familiar! I would definitely not do this in the height of summer as it would be too hot to sleep, but right now the nights are still cooler so it is fine.

One trigger that I didn’t expect on this trip is that Byron and surrounds are the land of magical alternative medicine, and CFS is a favourite target. During my first year of illness I threw so much money and energy at these things that I have become very jaded, but at the same time, there’s always the voice in the back of my head that says maybe I’m not trying hard enough. Maybe I’m just lazy. Maybe it’s not even real and I’m just failing. When you have an illness that doesn’t show up on a test, the doubt can creep in easily. And there’s an entire industry here of people preaching cures for the desperate (and the loaded – kaching kaching). I’ve had to remind myself about the terrible rates of immunisation here which is just inherently dumb and just try to comfort myself that even though evidence-based medicine hasn’t done much for me, it’s the best option we’ve got.

The other thing that is hard when travelling is the physical limitations. In one way travelling on my own ameliorates that to some degree — when I’m in a group, I am always so conscious of holding others back, and am often silently suffering a bit trying to keep up. People can get awkward when I raise my limitations so I very often just try not to. And there’s still a sense of embarrassment, which I know rests on me rather than on others, but it’s still there even five years in. I think particularly because of my size — when I was an active fat I felt like I was defying stereotypes, now I feel like a giant stereotype and my confidence is lower. But at least on this trip there’s only me to please. Unfortunately though I still have high standards. I get annoyed at myself for struggling to scramble up soft sand, for not being able to walk far without pain and fatigue, for not feeling confident to swim in the sea if the surf is choppy in case my arms get tired, for feeling pain and weakness from minor tasks. The other day I went to the Byron community market on the beach and found myself struggling. The heat, the crowds, the uphill walking – fatigue started to hit me strong and hard. Things in the last few months have really had me wondering if maybe my fatigue is worse, or the muscle pain is worse, or if I have just gotten weaker and unfit. It’s hard to know. But when you’re in a public place and there’s nowhere to rest and it hits, it is hard and stressful. I eventually found a park bench in the shade that was vacant but it killed the buzz of the markets for me —they just became a desperate search for somewhere to sit and some shade. (My mood was lightened though when someone asked me to sign a petition to protect bees from 5G — the conspiracy theories here run deep).

It’s still weird to have to consider accessibility so strongly when travelling. This year, I got a disability permit for on-campus parking, and it was a real mental challenge to come to the decision to apply for it. It means I can park in two-hour spaces for longer and on a campus where parking is shockingly bad does it really does make life easier, especially during my back injury recently. I will have to reapply each year though because my illness is considered ‘temporary’ under the criteria (haha five years seems like a while but OK sure). But off-campus I don’t qualify, which is fine and not an issue for me. But there’s still the question of — if I drive all the way to a tourism site or natural attraction, will it be too difficult for me to access? How steep is it? How far do you need to walk? It’s actually really hard sometimes to find this information online, or even sometimes at the site itself. You might see a sign that says it’s 500m to a lookout, and it starts out a nice path, but then drops off to precarious steep gravel or something. And so many sites just aren’t that accessible — for me, someone who grapples with even identifying as having some disability, that makes accessibility hard, but for others it would often be impossible. It also affects people with prams, so it’s not just about mobility. This experience has definitely made more more aware of this issue, and how we should be trying to do better where we can.

This year’s trip to Vanuatu was amazing and felt like a real victory — I had intended for this beach trip to be a ‘celebration’ of getting through five years with this illness, but that’s not quite the headspace I’ve ended up in. But it is still good to be away and to take some time away from the day-to-day. I’m trying not to overthink too much but that is not a strength of mine — there’s so many things I need to decide about the next five years and what direction I should go down considering the limitations I now have, which are increasingly unlikely to be cured. But for the meantime, I will just keep eating nourish bowls and superfood smoothies at the cafes of Byron and see what happens? Five years in and I still got nothin’ when it comes to answers on ME/CFS. Most of me accepts this, but there’s still a quiet voice that says ‘what if….’.

2 Responses to " The ME/CFS five year anniversary roadshow "

  1. Jenberra says:

    Hi Ashlee, I wanted to thank you for your blog and sharing your very personal insights into what it’s like for you living with ME/CFS. I also live in Canberra and am getting the run-around from the medical profession after years of fatigue/aches/dizziness and brain-fog. I’ve been told my physical issues are due to mental health, which I know is not the case. I feel like a malingerer when I can’t make it into work or can’t do social/home things because of how unwell I feel. I’ve a lot of self-doubt comparing what is do-able for me with what others take for granted. At work when asked what I did on the weekend I usually say I had a nice quiet one and pottered around, when in actual fact I often spend my weekends in bed trying to recover from my week. If I say I don’t feel great there’s an assumption that I have a cold or something temporary, and it’s not worth trying to explain. I’m actually learning that feeling crap is the new normal for me and I need to celebrate the small achievements I do make each day instead of comparing myself to others. But sometimes I wish there was someone who understood, and reading your blog has made me feel that connection. Thank you so much ☺️ And enjoy your holiday!

    • Ashlee says:

      Hi Jen, thank you for your comment! Sometimes I feel I am just brainfarting out into the universe as I don’t know where else to put this stuff and there’s not a huge amount of people I can talk to about it, so thank you for your comment, I am really glad it is useful in some small way. Your story sounds really familiar. I wish I had some tangible advice to give on doctors and who to see, but I haven’t found much. I can very much relate to the ‘oh I just had a quiet night’ ‘oh I just had a quiet weekend’ story! People act weird if you are like ‘oh I stayed in bed for most of it in between doing basic life admin because I am struggling to keep my head above water physically!’ And yeah most people just do not get it. I’ve pretty much also had to embrace that this is how I feel now, operating at this level is my max, but it is so damn hard. Especially when you have hopes and dreams and goals and see your peers have the energy to pursue theirs. Sending hugs!