EP.264/ My Struggles travelling with dysautonomia and mcas
Today I am sharing a personal experience podcast, in the hopes that it might help you.
Social media in summer is full of people’s holiday pictures and I think for people with chronic illness, that can be quite isolating because we may not be able to travel or travelling can be hard to navigate. I’ve been sharing some of my videos and pictures of our travelling recently, and I’ve noticed that a lot of people make assumptions about what that means – they assume I’m well, happy and in a good place, and I think it’s important to share the reality.
To me, travelling is worth it and the best thing I’ve done in my life, and I have no intention of stopping any time soon or settling down, but it comes with ups and downs and has come with some unique health challenges. I am grateful that endo hasn’t really played a part in many of these (except for some cycle disturbances which I’m working on), but it’s really been based around my mast cell activation syndrome and dysautonomia, which I was diagnosed with officially last year, after suspecting them and trying to seek a diagnosis for the past few years.
POTS and MCAS are associated with endo and are very common within our community, so I thought I’d share my real struggles so you don’t feel alone, and so you don’t feel like I am this perfect health coach who has everything all figured out with my health and so that you can maybe learn from my experiences, and hopefully avoid some of the issues I’m dealing with.
1. Sleep is an essential but often overlooked part of endometriosis management. Lack of sleep increases pain signals, inflammation and feelings of depression and anxiety, and worsens blood sugar imbalances by causing insulin resistance the following day.
Part of getting good quality sleep is good sleep hygiene practices, like lowering blue light exposure one to two hours before bed, having a completely dark room, a cool room and ear plugs if needed.
For me, I need all those things. I have never had good sleep, and now I have my dysautonomia diagnosis, I understand it somewhat more. I experience something called adrenaline surges, where my body gets flooded with adrenaline, making me extremely alert, anxious, and shaky. However, it can be triggered by very small things, and for me, light at night and early morning, leaves me wired. Typically, light triggers the release of cortisol, our waking, and our stress hormone, and suppresses melatonin, and darkness triggers melatonin. Cortisol will normally rise gradually and gently in the AM, and peak at about an hour after waking.
However, for me, I have low waking cortisol levels, which is actually very common within the endo community, because many of us suffer with something called HPA axis dysregulation (there’s evidence on this, by the way). And so, when someone doesn’t have a great stress response and cortisol is low, adrenaline can increase to make up for it – this adrenaline bump is usually isolated to our stress response, not our waking response, but for me, because I have dysautonomia and struggle with adrenaline surges, I also get this surge in the morning. Instead of a nice, gentle wake up with morning light, the tiniest bit of light will wake me completely, no matter how exhausted I am or whether dawn is at 4am and it is impossible for me to get back to sleep. I don’t feel awake, so it’s not like I don’t feel tired, I feel exhausted, but it is impossible for me to sleep again, even with the tiniest slither of light.
Back in the UK, we managed this by blocking every single source of light at night – it was quite the procedure. The doors would be covered with sheets, and we had a flat back box we’d stick in the window and then stuff the edges with fabric.
Whilst travelling, it’s been much harder, and I’ve really found it almost impossible to get 8 hours sleep on a regular basis. For me, this is so important as for the past 4 or 5 years, I was often averaging on 4 hours sleep a night due to my chronic, long term bladder pain. Now that is more or less resolved (I should do another episode on that!) I really want to make up for lost time because the research on the long-term effects of lack of sleep is pretty scary.
We try to be really careful about booking Airbnb’s, but up until the summer, our accommodation was through Trusted House Sitters, where you pet sit around the world in exchange for accommodation, which meant we had much less choice. We took our light blocking curtains with us travelling, and so would put them up in the bedrooms and then put towels across the top and down the sides to stop light coming through the edges, but sometimes these things were not enough with giant windows or with limited resources.
Thankfully, sometimes it would work, and I’d have a few weeks of better sleep, but other times, we’ve gone from place to place and this has been a constant challenge. For those of you thinking why don’t I get an eye mask, I have one – a. really good one, but it’s not enough. I literally need to be in a black room to sleep, it’s very difficult!
Now we’re booking Airbnb’s, a lot them have skylights, many of which also list that they have light blocking curtains but when we’ve arrived, they have them on the normal windows, but not the skylights, which honestly just makes no sense to me. So, we’ve been blocking up the sky lights with anything we can find, including my cardboard standing desk!
The other thing disturbing our sleep is noise. I have noise blocking ear plugs, but I cannot use foam ones because I get allergic reactions from them, and I find those to be the best ones. So, I have these ones that suppress noise but don’t dull it completely, and so early morning noise or late-night noise can be a factor. We try our best to book quiet places, we try to book houses not flats, but if we do book flats, we ask the hosts if it’s top floor or sound insulated etc. Unfortunately, people just want bookings and so they leave out things, so for example, our current place is a house in the mountains, but the owner has added a corner shop right in front of our house and has a poor guard dog locked up outside of it 247. This dog starts barking like crazy from about 5.30 am and then the corner shop opens and people have this habit of pulling up, leaving the car engine on, and gathering outside to talk very loudly. Because we’re choosing often remote places, often Google maps doesn’t show these roads, so whilst we do our best, there’s sometimes things we just cannot predict – especially things like a dog being chained up constantly, which had I known about, I would have never had gone for.
So, the pros are that we’ve been resourceful and brought curtains with us etc. but it definitely is taking its toll on me, and I think going forward, the best thing we can do is literally ask the hosts before booking what the blind or curtain situation is and if there are any noise factors to consider. It does make me look fussy, but the impact lack of sleep has on my mental and physical health makes this an absolute necessity.
So, if you resonate with this, I highly recommend you take some light blocking curtains with you and ask as many questions as you need to before booking your trip.
2. The next health challenge I’ve been experiencing is heat intolerance. As someone with dysautonomia, I struggle with temperature regulation and when it’s cold, I’m extremely cold and my feet, ankles, wrists, and hands literally hurt to the point where I can’t sleep, and when it’s hot, it feels absolutely unbearable to me. This has gotten much worse in the past four years since my dysautonomia really flared up and became a big part of my life, previously, heat didn’t cause this level of struggle.
Unfortunately, I think this is confounded by a few other factors. I have to wear 50 SPF on my skin because I’m very pale and there is a history of skin cancer in my family, and I have tried so, so many sunscreens and no matter what I try, they all suddenly make me feel extra sweaty and extra hot, like my skin is suffocating as soon as I put them on. I really don’t have an answer for this yet, I wish I could get away with wearing less sunscreen, but I can’t be out in midday Mediterranean heat without it. I have thought about designing and making my own sun protective clothing, because a) I can’t find any whilst travelling and B) the designs are awful, so this may be an option. Surely, I can’t be the only POTs sufferer who struggles with this and would benefit from some fashionable sun protective clothing! I have some cute designs already in my head, but I don’t have a sewing machine with me, so that’s a bump in the road.
Another issue, which I’m embarrassed to a admit to, but I think we can all agree that health problems don’t occur in a vacuum, and we have to unfortunately navigate them in real life - mixed up with all our other messy bits - is that my dysautonomia causes me to have spider veins in my legs, due to the swelling and circulation problems it causes. As some of you know, I have a history of an eating disorder and body dysmorphic disorder (both diagnosed, many years ago), and so I can feel very insecure about my body and I tend to obsess about something once it starts bothering me, and for me, it’s currently my spider veins. I don’t even notice them on other people, nor do I care or think they’re a problem, but on me, I feel really distressed by them, so I cover up my legs with either long skirts or trousers. When it’s 36 degrees in France and it feels like you’re wearing a tent around your legs, it is not fun. For some people, putting more layers on and covering up keeps them cool, but for me, it seems to make it much worse. I need air circulating around my legs and arms, but due to my mental health and my obsession with my legs, I am constantly in this place of managing my self-esteem vs. my physical health. For someone listening who perhaps doesn’t struggle with body dysmorphia, this may be hard to understand, and I know many people who will wear what they want and just dress comfortably and not care what others think, but for me, it leaves me crippled with anxiety and negative thought patterns.
The solution of course would to either get therapy and or some lighter clothing, both of which extra cost money I don’t currently have, so I’m working with what I can. I have been doing circulation massages and exercises on my legs to improve blood flow, whilst also wearing long skirts with wedges that allow for some air to circulate around my ankles. As I’m short, if I wear flat sandals and a long skirt, there’s just no space for air to get in because my skirt is basically reaching my feet, but when I’m in heels (I have some very cool y2k wedges I got a few years back) then there is a little extra height that allows some air in.
We of course try to stick to the shade as much as possible, but it’s not always realistic if you’re walking through a French market or hiking up a Bosnian mountain, but you can be sure, if there’s shade, I’m walking in it. We tend to stop regularly so I can just take a moment to regulate in the shade, and when we stop to eat as we often make picnics, it’s always under a tree and ideally near water if we can find any, as it’s often cooler near a waterfront.
I would love to find one of those battery powered handheld fans, which I swear they sell all over the UK every summer, but I’ve not been able to find any so far on our travels, and now we’re not in the Schengen area, it’s proving extremely difficult to get anything shipped in.
Lately, I’ve gotten to the point where I’ve actually avoided going out on the days when it’s the hottest. This is frustrating because we are working remotely Mon to Fridays, so the weekends are our only times to explore, and when we’re losing a day because I’m too hot, it feels like a waste of money, time, and experience. However, we’ve both appreciated the time to rest, as we’re often working during the week and then out at the weekends, which can be very tiring, so the pause is actually nice. And in the mornings or evenings when it’s cooler, we’ve tried to get out for a cycle or a walk, and because we choose scenic areas to be in, it feels good to get the chance to explore those a little, rather than jumping in the car to drive two hours to some tourist site.
Of course, there are some really obvious POTS management strategies I use daily, like staying hydrated, taking in a lot of salt, elevating the legs, exercising regularly and so on, but none are really moving the needle on my heat struggles, so that’s something I’m working through still. I was only diagnosed with dysautonomia last year, so understanding my body and its reactions to heat and what helps it, is still a learning curve.
3. My final struggle is my heart pain and palpitations, which are caused by a mix of my mast cell activation syndrome and my dysautonomia.
For the first four or five months of the year, I had really gotten them under control with my high dose quercetin and monitoring my intake of caffeine and certain stimulating foods like cacao. However, once we got to France, my chest pain became a daily occurrence and then after we left France and travelled through Europe and over to Bosnia, it changed from heart pain to really severe daily palpitations that leave me breathless and literally cause my body to shudder.
Obviously, I have had all this investigated last year when I was seeking my diagnoses and unfortunately, I haven’t really been given much more advice than what I already was doing, which was to stay on high dose antihistamines and eat more salt, but both instructions were very vague, and it’s been up to me to put my coaching hat on and research doses, and how much potassium vs. sodium and what’s safe and what’s not.
In France, we were eating more histamine foods because what’s available in the supermarkets is different from in the UK, so I think us leaving there is what allowed the chest pain to ease, but since then, I am really grappling with these palpitations and what’s triggering them. I think it’s my electrolyte balance, but no matter what I try, whether I increase potassium rich foods, add more salt, take magnesium supplements, etc. I don’t seem to be able to strike the right balance. I may feel okay and then I drink a glass of water, which changes the balance again, and they kick off. I am also curious about whether my B12 or folate are low, which could also be causing these symptoms (and I have a history of), but I cannot get tests shipped to the non-Schengen area, so I have to wait until November to do that. I would also love to check my sodium and potassium levels in my urine, but again, I can’t order those tests right now.
I’ve been struggling with this most intensely in the past month and I’ve tried different sodium amounts and different electrolyte drinks, etc. but I’m still stuck, so my next step is to consult my tutors and my colleagues to get their opinions and if we’re still stuck, I’ll have to book in with my cardiologist and have a remote appointment. The good news is, I have a heart monitor and a blood pressure monitor with me, and I’m now check them every day, and though I have seen some lower blood pressure numbers and higher heart rate numbers than normal for a healthy person, they’re not abnormal for someone with dysautonomia and they’re not at dangerous levels, so that’s reassuring. I would absolutely recommend if you have dysautonomia, to take a blood pressure monitor with you, which was also check your pulse, and just check in with that regularly if you’re experiencing symptoms.
The palpitations are honestly distressing and worrying for me, but they certainly haven’t ruined travelling. There are going to be ups and downs with my health wherever I am in the world, because I have about five different chronic conditions, and life happens, and it triggers reactions – I can’t live in a bubble and not experience life. However, I would certainly like to get these under control so I don’t have to go to bed at night wondering why my heart is causing my chest to shudder and I would of course enjoy myself more and feel more carefree if I wasn’t struggling with these symptoms, but I don’t regret choosing to go travelling and I would rather be experiencing these symptoms out here on a gorgeous mountain top than back in the UK where we were living before (that’s just my personal preference, nothing wrong with being a home body!).
I’m lucky that we are going to be continuing to travel for the foreseeable and I am learning how to travel with these conditions and how they affect me, so I’m hoping in a few months I can experience travelling symptom free or with very low levels of symptoms.
Okay, so that’s it. I hope that this wasn’t depressing, but instead shows you it is possible to travel with chronic conditions, but that some tailoring may need to be made along the way and I hope my experience maybe gives you some ideas for your own holidays or travels, if you have any planned now or in the future.
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