Anxiety · chronic fatigue · chronic illness · Depression · endometriosis · fibromyalgia · Personal · Recovery · sleep · Uni · University,

Travelling with a chronic illness 2.0

 


Ask me now if I’d do it all again and I’d say yes! I’d do it again in a heartbeat.

Recently I’ve returned from a summer school to Colombia with my university. This involved a LOT of firsts. Flying alone for the first time, flying long haul for the first time, first time on a plane since developing ME as well as first time on a plane since I had a cyst rupture on my right ovary in an airport at 14. (Yes that experience traumatised me a little).

Now of course this wasn’t all smooth sailing. It didn’t even start as smooth sailing considering I woke up with a paralysed arm on the day I flew out and had to sit down to get dressed it’s some minor miracle I made it at all and without use of wheelchair assistance at the airports because I am far too stubborn for my own good.

The flight itself was better than expected. I thought I would get bored, considering the first plane was a 9 hour flight and the second one 3 hours. The reality was so much stress and adrenaline went into getting these flights that I spent much of that time dozing. Although I did manage to get the reading for our first lecture done (Only reading I did all trip) and watch Love Simon. So boredom wasn’t an issue. Pain on the other hand was. I was getting severe endometriosis related pain in my lower left back as well as severe pain in my lower left leg. And if that wasn’t enough my left collar bone decided it would be fun to act up. As our first flight was delayed by an hour it meant we had barely enough time to get to our connecting flight, this meant a hurried walk through the airport praying we’d make the plane on time and trying to keep our stress to a minimum. This was where fatigue was an issue – as my heart had been above 100 all day due to possible POTS and a confirmed diagnosis of CFS I was really struggling once I got off my first flight, despite spending a large portion of it dozing. I was honest about this, which was a step up from usual however persisted in the fast walking despite every inch of my body was screaming against it. I was fighting to keep my legs moving, I was lightheaded and started getting severe chest pain but I didn’t want to cause the rest of the group to miss the flight because I was slowing them down.

Fortunately we made it to Bogota, Columbia on our scheduled flights and made it to our accommodation. After having a shower, I went straight to bed.

Lesson 1: Get the wheelchair assistance – it will make the journey more comfortable and less stressful if you have tight connections which leave you sprinting across the airport. It would also be good for reducing payback and allowing you to get more out of your trip!

Fast-forward to 7 hours later, I woke up the next day feeling nauseous and feverish and genuinely thought I’d caught something off the plane. Go into the bathroom, look in the mirror and realise I have an autoimmune rash. (Which is always slightly terrifying as someone with no known autoimmune condition.) But obviously being me, I couldn’t say I needed the day to rest. I get restless being stuck in a room unless I am legitimately dead, especially in an unfamiliar environment. So I went out with everyone, had breakfast and a few of us walked around the city for a few hours. Which obviously was great for my pain. Again, when I was asked, I was honest and said I was getting a lot of pain but also being me, said I would be fine unless everyone else wanted to go back. We headed back, and I was told to rest, moaned a little, and then actually crashed for 5 hours upon getting back to my room. Went out for dinner feeling refreshed although was fading again towards the end and that was that.

Lesson 2: Take the first full day to rest! Don’t do what I did and walk over 10,000 steps when you never do that at home due to the pain and fatigue it causes. You will pay for it later on and you don’t want that.

So then we have our second day. Which was the first day of timetabled activities so obviously perfectionistic side of Hannah kicked in. There was no way I could miss that and in my mind I had to do everything. (Which obviously wasn’t true, throughout this entire trip it has been made expressly clear multiple times a day that everyone else would be okay with me resting if I needed to.) But Hannah is Hannah, and although I’d had very minimal sleep due to being in pain (Yay ovarian cyst ruptures and all the walking being hard on my legs) I made it my mission to manage the full day despite not feeling atall well. It wasn’t like I was in a crash or anything.

Lesson 3: REST! Listen to your body. If you had a cyst rupture on your ovary or whatever is causing you to feel bad let your body have at the very least a morning to recover. (Normally give myself atleast a day when I’m not away)

I made it through the day, and even participated in a salsa lesson which I was very much told off for in a “well done but please don’t push yourself too far” way. It was fair to say that once the day was over and we got into the taxi I was well and truly done for. My endometriosis pain was really acting up in a contraction like pain way and once I got back to my room I managed to dislocate my shoulder by writhing in pain. (My pesky shoulders will feature a lot in this post).

And so, from 6pm to 6am, only getting out of bed to take a shower our third day starts. Apparently, I still had a lot of endometriosis pain, which is always fun because max strength prescription co-codomal combined with an overdose of ibuprofen won’t touch that. But we persist, despite being told resting was okay if that’s what I wanted to do. I stayed off of the coffee bcause I think it was coffee that really did me in the day prior. So we stuck with a green juice which did wonders for my endo pain.
The juice in Columbia is all freshly made so it’s incredible!

So you would think, endometriosis pain solved, I would manage the whole day. Well you and I were both wrong. Which was sad as the rest of the group were going up Monseratte which I really wanted to do. But my body had other plans. I was feeling lightheaded, shaky and my heart was doing weird things. I would have tried to power through it if it wasn’t for my brain completely going to the point where I didn’t even feel present in the room we were in. I knew I was having some sort of crash. If I have POTS it can be put down with that as on this occasion I lacked the extreme muscle weakness that tends to come with ME/CFS. So I didn’t even make it until lunch, but after forcing down various forms of electrolyte drinks/powders and eating salty snacks I was back in full force by the next day. (Well as much full force as is possible for me)

Lesson 4: If you have POTS or just have similar issues as a result of another illness keep salty snacks and electrolytes on you because sometimes they do actually help and it will save you from having to get other people to go down to the shop for you when your too unwell to do so yourself.

So it is now our 4th day! And we managed! Maybe we pushed too much considering nausea, and severe pain but at the end of the day, I would rather push myself a little too much than not quite enough. I had to sit down on the pavement whilst waiting for the taxi has my heart rate went crazy high and I knew at this point I had to make it through the rest of the day. In the afternoon we went to a botanical gardens which meant lots of standing and walking on some severely painful legs, which I managed but god knows how. Especially considering I had been told if I needed to sit down I could. (Clearly being given the option to rest doesn’t make me weak and pathetic)

Lesson 5: If your honest about how your feeling you may be surprised by how people try to help/accommodate you.

Now day 5 is what I would call the start of the major crash. (This was definitely ME/CFS) I woke up feeling okay. (Well in my book). But at around 10am It just hit me like a ton of bricks and although I managed to stay for the rest of the lecture and went back at lunch I knew when I was standing in the lift on the way back up to my room that I had really gone and done it. For those of you who don’t have ME, a bad crash is so bad that you can barley lift up a bottle of water and lift up your head to drink said water. It’s having to crawl to get to the loo because you can’t stand up for long enough. Not fun.
But idiot here did things the next afternoon/evening as she was getting to the bored and restless stage of the crash.

Lesson 6: If you have a bad CFS crash don’t rush back into trying to keep up with your able bodied counterparts.

So I spent the weekend and the Monday stuck in bed, barley conscious, barley able to eat or drink due to severe head and face pain as well as muscle weakness and barley able to get myself from my bed to my bathroom.

But I to some extent recovered and was back to managing a full day of things the next day. Although I did collapse in the toilets after lunch. Fortunately I was able to get back up and pretend nothing had happened but it was still slightly terrifying.

Lesson 7: If you collapse/pass out/fall bring your phone with you EVERYWHERE. I was lucky I could get myself up that time but if I couldn’t I would have had to wait for someone to find me because I left my phone in the classroom.

And so Wednesday came, with more endometriosis pain (Think my uterus is slightly jealous that CFS has been getting all the attention.) Again I only managed a half day, but felt dreadful with CFS less than half way through the morning, however it was so much fun that I had to stay. Now obviously I then spent the rest of the day, in bed, in the dark feeling super nauseous, unable to see, with a really bad migraine. But it was worth it!

Lesson 8: sometimes you need to have fun! Even if physically you feel dreadful!

With a lack of better judgement and despite being told to rest I managed to make it through Thursday. This was out second to last day in such a beautiful country and by this point I just needed to have fun and make the most of it rather than look after my health. I slept in all 3 of the hour long taxi journeys that day, and my right ovary started acting up a little more than it had been in the 2 days prior but I managed and it was definitely worth it for the post it notes in the 3M goodie bag. (I’m such a stationary whore) After going back and starting packing, which meant enduring more bad right ovary pain and a subluxed shoulder I even managed to go out and look at some pretty lights for around an hour before crashing in bed till the next morning.

Lesson 9: We’re going to reinforce that sometimes you’ve just gotta have fun message!

So obviously felt awful come our final full day. Endometriosis was definitely jealous at this point seeing as I woke up, unable to move, crying from pain and nausea. Even had to send a message to say I might not be able to make it down because Endo was that jealous. But being me I did and somehow made it through the morning despite being very bitchy and absent as my entire body was hurting so much. There were times when I was asked if I was okay and all I could do was nod or whimper because endometriosis really knows how to get the better of me. Submitted to being taken back to the accommodation just before lunch, was not feeling remotely well enough to endure pain and people for any longer by this point. Layed down, which helped ease my endometriosis pain although nothing else and basically napped for a good 5 hours before going down for our final dinner together.

Lesson 10: Sometimes pain gets the better of us all. Superwoman or not. Giving in does not make you weak. Giving in means your listening to your body, accepting your reality and that requires an incredible amount of strength.

And here we come to our flight home. Which was obviously not smooth sailing because severe pain, endometriosis was definitely threatening a major flare up and still is and it became my mission to make all my flights on time so I could get home before the stabbing vaginal and rectal pains and the burning stabbing bladder pains and all the rest of the taboo joy that comes with endometriosis. It was about the point that I had to stop myself from crying/screaming in pain in the plane toilets over peeing that I realised that this is going to happen at some point. And I did. I made all my planes, dozed for most of it bcause fatigue, had to run more than I’ve ran in atleast a year to make my last flight as due to a delay I had less than an hour to make the connection. But I managed and I’m now home safe and sound. Can’t tolerate having my curtains open and sleeping more than I’m not but happy with how my body is dealing with this because it could be a lot worse!

Lesson 11: Avengers: Infinity war is incredible for pain distraction! Especially if you like fangirling. (couldn’t follow it because brain fog but enjoyed the fangirling.)

Lesson 12: Going to reinforce the wheelchair assistance thing so you don’t have to fight your body to run up escalators when you find walking up steps difficult enough.

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