At the very top of my must-go-to bucket list is Iceland. As a young child, I watched a TV series set in Iceland all about a young boy, his family and very importantly his horse. I don’t recall the name of this series or indeed even the storyline. I do recall however quite vividly – the landscape. Even as a very young child I was able to appreciate that Iceland was a place of splendour unlike anything I had ever seen before. I was determined to one day visit it and see for myself the place I had fallen in love with as a seven year old.
Over the years my ardent desire to visit Iceland did not wane. As I learnt more about the country, reasons to visit it just kept piling up. I wanted to bath in the Blue Lagoon, a spa in Reykjavik heated naturally by geysers. I loved to ride so couldn’t believe it when I learnt that the Icelandic pony not only could carry vast weights but also had an additional gait between trot and canter. I read about the beautiful fjords, 24 hour daylight in the summer and its tiny population. Everything I learnt made me want to visit the country more and more.
It was therefore with great excitement that myself and my husband started to plan a mid-term break in Reykjavik for February, 2014. We were going to go horse-riding, trekking across lava fields and glaciers, whale watching and swim in the Blue Lagoon. We even hoped that my best friend, Sarah, would join us. Five months prior to our departure date I ended an ordinary working Friday with an horrendous cold and the rest as they say is history. February mid-term break came and went and we didn’t fly to Iceland. My dream seemed to have been crushed.
Having finally decided to go on holiday, eight months after becoming ill, we chose to go on a cruise taking us to Norway and Iceland. There was more about the realities of holidaying with M.E. in an earlier blog. It seemed therefore that my dream of visiting Iceland was going to come true. Yes, it would be a modified version of the dream but it would at least, I felt, affirm whether or not this dream, idyllic place was all that I imagined it to be and whether it deserved its place on my bucket list.
In Norway, I had perhaps done a little bit too much the first day so on our second day I had to be careful and only disembarked for a brief coffee. I wasn’t bothered though – we were in beautiful surroundings so quietly resting looking at the view was acceptable.
Iceland, however, was all that I dreamed it would be. Our first stop Akureyri, in Northern Iceland, was absolutely stunning. One of Iceland’s largest towns (with a population of 17,000), it was surrounded by the most beautiful of mountains, still capped with the winter’s snow. All I wanted to do was get off the ship and wander around starring at these stunning views.
I rarely felt really frustrated with my M.E. but that day I could have cried. My mind and my husband were telling me to be careful but my heart didn’t give a damn, it just wanted to forget that the body it was attached to was ill. Despite a multitude of warnings from my husband, I insisted we climb up numerous steps to a church and then higher again to a botanical garden. I ignored all the warning signs that I was beginning to struggle. So what if I had to stop and rest continuously and was finding myself out of breath continuously – my heart was telling me that that was okay, I wasn’t pushing myself too much.
In total I probably walked about 2 miles, to and from the ship. I just wouldn’t allow myself to believe that that was stupid. Prior to going on holidays on a good day I could walk a mile. Why I allowed myself to believe that what I was doing was okay is beyond me! Or is it? The reality was I didn’t want anything to spoil my dream. Iceland had been my dream for almost 30 years, allowing myself to restrict my exploration was too heartbreaking to actually do.
Of course by the time I was returning to the ship, I was in a state of near collapse. Every couple of feet I had to sit and rest. Moving one foot in front of the other was incredibly hard. The gangplank into the ship was not unusually steep but that day, I had to literally drag myself up it, hanging onto the railings for support. Three hours after landing in Iceland, I was back in bed, a location I stayed in more or less solidly for the next 20 hours.
It meant of course that on our second day in Iceland, I could do little more than stare out of the window at the wonderful town we had found ourselves in. There was no way that I could physically go ashore. My husband tendered ashore alone, to wander around my dream country without me.
Normally, my frustrations don’t get in the way of my doing the right thing. Normally I am quite good at balancing what I want to do with what my body can cope with. Normally I am quite good at putting aside my desires for the good of my health. This however was an occasion where I almost felt like I had no control over the situation, I was going to do too much because I wanted to and well to put it simply that was that. Of course, the reality is that because I allowed my desires to overtake my health needs, I therefore lost a day in my dream country. If all I had done was wander a little around the first town, drink several coffees and admire the view then surely on my second day in Iceland, I would have been able to do the same and not have been left behind while my husband experienced my dream.
It is undoubtedly normal to feel frustrated. How can you not? Usually, suddenly and unexpectedly everything you understood about who you were and where your life is going is ripped away from you. Suddenly you are expected to manage every second of every day and constantly assess and reassess how you are feeling, should you rest or is it okay to continue. Of course it is normal to feel frustrated about what you might view as a lost future.
The Sochi Winter Para Olympics were on the first winter I was ill. I remember watching these amazing paraolympians do the most amazing of things: slalom blind down a course that would have challenged the best skiers; war veterans who had lost both legs ski jumping. It was incredible. These people had been through hell and back and yet they were brave enough and strong enough to now be competing for their nation. It seemed incredible. I do remember though that it also frustrated me greatly.
I have no doubt that should I have gone blind or lost a leg that I would not have been skiing for Ireland at the Olympics. Pre-illness I was in no way sporty and that surely would not have changed. What frustrated me however was to think that even if I wanted to, even if I suddenly had the desire to go ski jumping, I couldn’t. It seemed unfair that these people were able to tackle their physical disability and win their battle with it.
I, on the other hand, no matter how much I desire to ski down a daunting slope, while I have M.E. won’t be doing it. There is no getting around the disabling factor of fatigue and PEM. There is nothing you can take that will prevent you from getting it. Strenuous exercise of any description can cause you irreparable harm. The limiting nature of this I find very difficult to deal with. The deep frustrations it cause me never go away. Just usually I can suppress my desire to do something by considering the repercussions.
Dealing with your sense of frustration in a sensible way is all about learning to be ill. For me in a way it is about sharing my sense of frustration through my tears or through my words so that those around me understand why I want to push so much when theoretically I am ill. Allowing my frustrations to win over what I know is sensible is never going to be the right thing to do.
You will come across lots of people who will argue that you should abandon all your dreams and hopes. This disease means that you will never live your life again. That this disease should be what defines you. I, personally, cannot see how that can in any way help your mental health. I believe recognising that certain things frustrate you means you still have dreams and aspirations that go beyond simply being ill. I believe that these can provide you with hope and the motivation to keep on fighting this disease. I need something to get me up in the morning and to make me smile when all I want to do is cry – without dreaming and the inevitable frustrations that will follow, I do not know what would keep me going.
Of course who am I to say how you or anybody else should feel about your illness or feel about your frustrations but who can argue against the power of positive thinking.
On a daily basis I have to tackle the limiting nature of this illness. The old me, who never really let anything stop her, is still there so of course at times I just want to scream at the world and ignore all the sensible advice my mind and those around me give me but I have learnt to ignore them at my peril.
What frustrates me must simply go back into that box entitled, ‘Not for Me, Just Yet.’ That doesn’t mean I should give up on my dreams and wishes, rather it means I shouldn’t let my inability to do them depress and anger me.