FYI. This is a really long post (7400-ish words). I considered splitting it in two, but it’s one story and I’d rather it be contained to one post. I know this will be hard going for those of you with ME, I always write these with our cognitive symptoms in mind, but ultimately I have to do what feels right for me. I would also like to give you a heads up that I bring up something in this post that may be upsetting for some people to read, and may be triggering to those who have experienced suicidal thoughts. I’m not writing about this for shock value, for sympathy or for pity. I simply want to be honest about my experience of living with ME, what it’s done to my mental health, and how I cope with it.
I haven’t yet shared the reason that prompted my decision to purchase a wheelchair. While my ME has been slowly deteriorating since the onset, it’s not that I had a sudden and drastic deterioration that left me with no option but to become a wheelchair user. I’m mainly house bound, and technically I guess I’m mainly bed bound, given I’m in bed for more than half the day, then I just transfer to the sofa. I think I’d accepted, and become so accustomed to this life, and my limited mobility, that it just didn’t occur to me that there was another option. It’s not even that I had previously thought about getting a wheelchair and discounted it, it honestly never crossed my mind, not once.
But then, in May last year, my favourite band, Sigur Rós, announced a series of concerts in Harpa, a stunning contemporary concert hall in Reykjavík, Iceland, between Christmas and New Year. Since I discovered Sigur Rós I had dreamed of seeing them perform in their homeland (Iceland, obviously), it’s been one of those ‘must do before I die’ things. So when I heard about these concerts of course I desperately wanted to be there. I began to wonder if I could possibly manage it, but it seemed practically impossible. The sensible bit of my brain knew I shouldn’t go, to not over-exert myself, to listen to my body, to do the wise (but depressing) thing and let it go. But then there’s the bit of my brain that is addicted to my pre-ME life, that wants to have fun, and do stuff that makes me feel happy and alive. I knew that if I decided not to go, the envy and devastation I would have felt would have impacted heavily on my mental health, which has already taken quite a battering in 2017. It was an impossible decision. Generally speaking my ME is far worse, and has much more of an impact on my life than my depression does. But when my depression has been at it’s absolute worst, there is nothing I have ever experienced that has been worse or more frightening than that. Frankly, this past year, my life has been in far more danger due to depression, than to ME. Although, saying that, I only have depression because of the life that ME has imposed on me, so it all comes back to ME in the end.
I eventually decided to put my mental health first, and make a dream come true, which, given ME has robbed me of all my dreams and goals, is something I never thought could happen anymore. As well as the concert I was also really excited about returning to Iceland. I had been five times before, and before I became ill I had even considered moving there for a while. The first time was with two friends at the end of 2013 for New Year’s Eve and I fell in love with the place. We went on a few day trips and did lots of exploring in Reykjavík. Desperate to go back I returned in September 2014 with another two friends, it was just for a long weekend in Reykjavík and was a kind of send off/celebration for my upcoming job in Antarctica. Then of course my illness took hold of me and I had to withdraw from Antarctica. With my would-have-been Antarctica departure date looming I needed a distraction, so with short notice (two weeks) I decided to go to Reykjavik for Iceland Airwaves. This is a music festival that takes place every November and I had wanted to go since my discovery of the greatness of Icelandic music (you can read more about this in my previous post Post Five. Music & Dad & ME). I had been to Iceland three times at this point but I still hadn’t seen much outside of Reykjavik, apart from some day trips, and I really wanted to explore more of the country. So, my mum and I began planning a two week holiday for June 2015. We were going to rent a car, stay in campsites and drive round the Ring Road (the road that runs around the island and connects most of the inhabited parts of the country). We had booked the car and planned our route, but as June got closer, and by this time I had been diagnosed, I realised it would probably be too much for me. So we discarded the road trip. But so I could still get an Iceland fix we went to Reykjavík for a long weekend that June instead. Before I was diagnosed, I had also arranged to go back to Iceland Airwaves in November 2015 with a friend. I did a lot of worrying in advance about how I’d manage, and while I managed less than my first Airwaves, I felt remarkably well, considering. That was my last holiday.
So this trip to Iceland for Sigur Rós was the first holiday I had planned since being diagnosed with ME. I knew it would be a bit of an experiment. My ME has deteriorated quite considerably since my last Iceland trip, so this would be a very new and unknown experience for me. I figured I would either discover that I can manage some light travelling, and it would open up more opportunities, or I would find that I was too ill to travel and to stay put in the future. It was while I was figuring out how I’d manage the practicalities of this trip, i.e getting around Reykjavík and the airports, that I first considered a wheelchair. At first I looked into renting an electric wheelchair in Reykjavík, but then that wouldn’t help me in the airports, and I really wasn’t keen on using an airport manual wheelchair, in which I would be dependent on someone else pushing me. Then I thought, if I were to buy an electric wheelchair, I could use it at home too, maybe it would help me get outdoors a bit more often. And if you’ve read my previous wheelchair posts (starting from Post Sixteen), you’ll know the rest.
Even after I had decided on the wheelchair though, and had raised the funds through crowdfunding, I still had massive doubts about the trip. I was excited, but I also felt incredibly anxious about it, and I wondered if I’d made a terrible, and expensive, mistake. I came very close to cancelling the trip on a few occasions. What sealed the deal was when the rest of the programme was announced (Sigur Rós were also curating a festival ‘Norður og Niður’ to run alongside their own concerts). There were many great acts in the programme, but there was one in particular that I was really excited about. They don’t have a band name, so it’s a bit of a mouthful, but they are three Icelandic musicians, all with successful careers as solo artists and/or in various bands, Sóley, Sin Fang and Örvar Smárason. During 2017 they collaborated together on a project in which they wrote, produced and released one new song every month, at the end of the year each of those songs would make up an album. I like their music individually and in their bands so I did anticipate that I would like their collaboration project. I was right, it’s a gorgeous, kind of melancholy, but utterly beautiful collection of songs. I also loved the concept of releasing one song per month. In what was a terribly difficult year for me, these three Icelanders gave me something to look forward to each month.
This is the beginning of the difficult bit…
I have never gone into this in any real depth, I may have hinted towards it previously, and I’ve only told a handful of people (my GP and counsellor being two of them), but I’ve yet to state it outright. Here it goes… for the last two years, I have battled with suicidal thoughts, and sometimes, it’s become more than just thoughts, I’ve made plans (and by plans, I mean DIY plans, not my Dignitas membership, which is an entirely different matter, something I’ll expand on in a later post). But, and this is important, most of the time, I don’t want to die, especially not by my own hand. It’s just that, living with ME is hard, except that’s putting it mildly, it’s hell on earth. There’s a reason why ME comes out at the bottom in quality of life studies when compared to other major illnesses (Click here to learn more). ME devastates lives, it’s destructive beyond anything a healthy person could imagine. My world is now so small and my life so limited, and I live in almost complete isolation and constant pain. Most of the time, my existence can barely be considered living. But, during a year in which my life became, at times, just too painful to bear, this music, this promise of a new track at the end of each month, was something to hold onto. That seems to put an awful lot of pressure on these musicians, which is not my intent. It’s not that I wouldn’t be here now if it wasn’t for them. If I hadn’t had their monthly musical treat to look forward to, I would have found something else. That’s how I cope with this, I’m constantly having to find something, anything, to look forward to. I force myself to find something to make this existence worth living, all in the hope that I can keep this up until science catches up, and a cure, or a treatment is found.
Even with this marvellous announcement, I still wasn’t sure. When I bought the two tickets for Sigur Rós (for my mum and I) I had thought that the festival events were included in the price, I was wrong (or maybe Sigur Rós could have been clearer). To see Sóley, Sin Fang and Örvar Smárason I would have to purchase a four day pass. That’s a lot of money for only one concert. Then they announced a one day pass, which was a better option of course, but, I would need to buy two, one for me, and one for my mum, who is also my carer, and I couldn’t go without her. As much as I love Sóley, Sin Fang and Örvar Smárason’s music, I couldn’t justify the cost of two day passes for just their concert. Given my ME based limitations I knew that their concert would literally be the only thing I did that day, and I couldn’t spend £150 for the two of us on top of what I’d already paid for Sigur Rós. So then, and I’m not sure what gave me the guts to do this, I’m notoriously bad at asking for help, I reached out to Örvar Smárason on Facebook and explained my situation. To my amazement, he replied to my message, and he couldn’t have been kinder. He arranged two complimentary day passes so that I could attend their concert. He didn’t have to do this, and I seriously can’t thank him enough. I would also like to mention, and thank, a very nice chap called Darren who works for Sigur Rós. I believe he runs their social media (when he’s not answering my numerous questions about accessibility). He also went out of his way to assist me and I’m pretty sure that even without Örvar’s assistance, Darren would have also made it happen. So both of them, in my opinion, are absolute stars.
So it was all decided, we were definitely going. Now that the trip was confirmed, I began planning all the other bits and pieces, and I found, to my dismay, that organising a holiday when taking a wheelchair into consideration is unbelievably stressful. There are so many obstacles, and so many questions to ask, it’s unreal. Information that should be freely available, is more often than not, not. I really had to dig, push and pretty much harass in order to get my answers. It was a pretty unpleasant and thoroughly disheartening experience. The ableism I encountered was shocking. While ME is classed as a disability under the Equality Act 2010, and I am certainly extremely disabled by my illness, I have never felt more ‘disabled’. And by that I mean, never have I felt more of a ‘second class citizen’ in my life.
Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.
One of the first enquiries I made was the cost of taxi’s in Reykjavík. On previous trips to Reykjavík, on arrival, I had always walked from the bus terminal to my accommodation, or taken the shuttle bus (no longer an option as buses are now banned from certain parts of the downtown area – which is a good thing for those who live there). This time, I knew I wouldn’t manage the walk, even with the wheelchair, as my mum would then be left with both suitcases, also, the pavements in Reykjavík might too icy for the wheelchair. In the event of icy pavements I would also have to get a taxi from our apartment to Harpa for the concerts, also a very short distance, and pre-ME, easily walkable. I’m in a Facebook group for tourists to Iceland, so I asked there. I made it clear that I’d been before, that I knew the distances I was asking about were very short, but could anyone tell me roughly how much a taxi might be. Now surely the only response to that questions is either, no response, or a helpful answer. But no. This is an example of what I got…
“If the weather is good and you don’t have a lot of luggage walking is easy.”
“I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.”
“You can walk there. It’s about ten minutes.”
Right. Not helpful. It apparently didn’t occur to these people that I was asking this question for, you know, an actual reason. I’m very open about my illness, for the sake of advocacy, but, when I write or talk about it, it’s when I choose to. I didn’t feel I should have to share my medical history to the members of this group for a simple question about the cost of taxi’s. But in this situation, to get an actual answer that was relevant to my question, I felt I had no option but to give them more information about my health than I wanted to or felt comfortable with. They had clearly made an assumption that my mobility was the same as theirs, it didn’t occur to them that maybe I had different needs than they did. It really doesn’t matter how ‘open my eyes or heart are’, that ain’t gonna cure my chronic illness. This is what ablesim looks like, and it makes my blood boil. I had many other similar encounters in this Facebook group so in the end I abandoned it as a safe place to ask questions about accessibility.
Now, the venue, Harpa. Where to start. I had expected that a contemporary concert hall, in a country known for its progressiveness and inclusiveness would be a bit better with the whole accessibility thing. Wrong. Getting information from them was like pulling teeth. In the very first email I sent them, to the box office, in which I referenced Sóley, Sin Fang and Örvar Smárason’s concert, the reply I got was this… “Is this performance suppose to be here in Harpa too?”. And that was it. Not only did they not respond to ANY of my accessibility questions, they apparently didn’t even know that this concert, for which they had already begun selling tickets/passes for, was happening in Harpa. This was the beginning of what was a mainly long, disappointing and frustrating journey with the venue. They continued to ignore my emails and only acknowledged me after I went down the route of publicly shaming them on Twitter. Even then, while they did help me out on one matter, they couldn’t, or wouldn’t, answer my questions in regards to accessibility. In the end I got the information I needed from Darren (the Sigur Rós guy).
One of the things I needed to know was where I could securely store my wheelchair during the Sigur Rós concert, which was seated. I’d need my wheelchair before and after the concert, but not during. Harpa does have a cloakroom but it isn’t staffed, it’s based on trust, which I like, but, while I was ok leaving my coat there, I was not ok about leaving my brand new £3000 electric wheelchair there. Harpa told me that there was nowhere else I could store it, so I wouldn’t be able to bring it. I refused to believe this, the building is massive, there had to be somewhere safe it could go. It was Darren who then assured me that I could bring it, and they would find somewhere for it during the concert, even if it was in the production office. I also wanted to know if there would be a wheelchair platform in the standing venue for Sóley, Sin Fang and Örvar Smárason, so I’d be able to see them. On this matter Harpa simply ignored me. Again, it was Darren who told me there would be a platform (that turned out not to be the case, but more on that later).
The communication with Harpa, or lack thereof was I think the lowest point of planning this holiday. The venue should be able to answer these questions, and it just baffles me why they wouldn’t/couldn’t. Since I graduated (from the Royal Scottish Academy of Music and Drama, if you’re interested, I studied Technical and Production Arts), and before I began working for Cyrenians (Edinburgh based homeless charity), pretty much all my jobs were in the theatre/arts/festivals industry. I’ve worked in box offices, front of house, marketing, admin, event planning and venue managing. I’ve never been in a situation where I could not, or would not, respond to an accessibility enquiry (or any enquiry for that matter), even if I didn’t have the answer to hand, I would have found it. I do wonder, after the service I received while actually there (which was good, apart from the lack of wheelchair platform, which was really bad), maybe, while they are (sometimes) equipped for disabled customers, they’re mainly just really bad when it comes to communication and customer service. Saying that, one of the lifts in the building had a chair in it, which meant not quite enough room for my wheelchair, which made that lift kind of redundant.
I had a few issues with EasyJet too in regards to my special assistance request. I was told at the time of booking that someone would contact me to get more information, such as the model of wheelchair and type of battery etc, to ensure it would be allowed on the plane. I waited, and waited, and really began to panic, what if I showed up at the airport to be told my wheelchair wasn’t allowed on the plane, what would I do then?! My efforts to contact them weren’t very successful. But I eventually got a call, less than a week before departure, and again, only after I publicly shamed them on Twitter. I’m not a fan of publicly shaming, I would never do it to an individual, but with a company with shitty customer service, sometimes it’s the only way.
Our flight was on Thursday 28th December. It was my my first time using the special assistance service at an airport, and I was pretty nervous, but I really cannot fault them. All the staff involved made for probably one of the most stress free airport experiences of my life. The special assistance guy, the EasyJet staff, security, everyone was incredibly helpful. And, importantly, for me, there was no hint of condescension or pity and they didn’t infantilise me. I was getting ‘special treatment’, but I still felt I was treated as an equal. This was also the first time I’d used my new wheelchair in such a public place, I was nervous about that too, but it was totally fine. After my bumpy experiences on the wonky pavements of Peebles, the smooth surfaces in the airport were a delight! I also found that when a crowd of people notice a wheelchair approaching, they automatically part to form a space me for me to glide through, I felt like the Queen, or Moses. I also didn’t get any funny looks, that I noticed anyway, when people saw me get up from my wheelchair and walk, which was a relief. It’s almost as though no one gave a crap about me and my wheelchair! I was able to roll right on up to the door of the aircraft where I folded up the wheelchair and put on its travel bag. It’s pretty nifty, the bag, it has long handles and allows for the wheelchair to be moved like a wheelie suitcase, using it’s own wheels. My mum and I got to board the plane first and my wheelchair was safely placed in the hold.
Oh, I almost forgot. In my last wheelchair post I’d mentioned that the wheelchair was proving difficult to fold and unfold. Despite the tutorial videos it seemed like the only way was to take the full weight of it and give it a massive shoogle, which I struggled to do given the weight of it. It turns out there’s a knack, and on my last practice before the trip I mastered it. I expect the more it got used the looser it became which made the folding and unfolding process so much easier. Phew.
It was a straightforward and boring flight, luckily I had downloaded a David Attenborough documentary about a famous dead elephant onto my iPad which kept me occupied. On arrival at Keflavík Airport we were met at the door of the aircraft by a nice man with a manual wheelchair. He wheeled me inside so we could wait in the warmth for my own wheelchair. I’m still not keen on manual wheelchairs, but I complied. Although I almost got strangled by my scarf when it got caught in one of the wheels. As the wheelchair man untangled it my mum told me the story of Isadora Duncan, the ballet dancer who died when her scarf became entangled in the wheel of a car she was riding in. I paid more attention to the dangling ends of my scarf from then on.
So that was me back in Iceland. Hooray! I then pretty much spent three days in bed. Hmm. It was definitely not the kind of holiday that I was used to. I left the apartment a total of four times. Something I constantly worry about is being judged. And this worry isn’t unfounded, I frequently have people judge and make assumptions about the state of my health based on how I look and by my activity. I’ve had people insist that I was ‘doing better’ simply because I was wearing make-up. So I can’t help but wonder if there are people in my life who think that because I went to Iceland, I must be ‘doing better’. The same people probably don’t understand the adjustments and sacrifices I had to make in order for this holiday to happen. So, to ensure no misunderstanding, I’ve provided you with a breakdown of my daily activity while in Iceland. Oh, and if you’re wondering, the only way you can know how I’m feeling, is if I tell you.
Thursday. We took the bus from the airport to the bus terminal and from there we took a taxi to the apartment. This is when we learned just how eye-wateringly expensive the taxi’s are in Reykjavík. It cost around £12 to go roughly 800m. In comparison, when I take a taxi to go to the doctor in Peebles, which is around the same distance, it costs £3.50.
Friday. The day of the Sigur Rós concert! While my mum went out exploring, and to the supermarket, I stayed in bed all day to give myself the best chance of feeling not terrible that evening. Knowing I wouldn’t mange to eat out on this holiday (I was already massively overexerting myself by being there, adding restaurants into the equation with the sensory input would have been a bad idea), and to ensure our food would be Phoebe-friendly (which means no refined carbs, no refined sugars, no refined oils, no gluten and vegan) we brought most of our own food and topped it up with fresh veg from the supermarket. After resting all day and having dinner we set out for Harpa at 7pm-ish. The pavements weren’t as icy as I anticipated so I decided to give my wheelchair its first foreign test drive. What proceeded to happen was a 300m white knuckle ride along Bergstaðastræti. I found that Reykjavik’s pavements are not so wheelchair friendly. The uneven pavements had the wheelchair veering into the road. The dropped kerbs are not dropped enough, at one point the wheelchair tipped forward almost throwing me into the road. I was close to tears by the time we reached Skólavörðustígur, where thankfully we found a taxi to take us the rest of the way. This is where my foldable wheelchair comes in very handy, it’s so easy to fold it up and pop it in the boot. Pretty much every taxi driver we encountered marvelled at it! After that stressful journey, by the time we reached Harpa I felt quite shaken, which wasn’t ideal. But we found a quiet spot and had I some time to rest and de-stress before the doors opened. Then, and I had been dreading this, it was time to find out what would happen to my wheelchair. Thankfully it was all good. There was a small room between the auditorium and the stage which could only be accessed by staff and was the perfect spot to keep my wheelchair while minimising how far I would have to walk to my seat. It went so smoothly, and the staff were so helpful, it was as if they’ve dealt with this exact situation many times before. So why the box office told me it couldn’t be done? Who the hell knows.
Now, the concert. This was my seventh Sigur Rós concert, and while they are always incredibly good live, this was by far the best I have ever heard them sound. They were just so exceptionally good. I have no idea how three people can create what they do on stage. Granted they have some backing track (on previous tours they’ve had additional musicians on stage with them, this tour has been just the three of them), but I don’t think I’ve ever seen any band work as hard as they do, especially the drummer. I mean, he can drum while playing the piano, at the same time. I can honestly say that this wasn’t just my best Sigur Rós concert, this was my best concert of all time. I’m so happy I was there. While I would have loved to stick around after the concert and soak in the atmosphere, it was time to go. I had been out for around three and a half hours, which is the longest I’ve been out, since May I think, at my mum’s birthday/fundraising party. Oh, and before we left, I saw Jarvis Cocker in the foyer, which was pretty cool.
Saturday. Again, I stayed in bed during the day while my mum went out. I had no appetite at all that day, I think I felt a lot more anxious than I’d realised about that evening’s concert, more specifically, about using a wheelchair platform for the first time. I didn’t know what the gradient of the ramp would be, so I didn’t know if my wheelchair would handle it. I also worried that I might feel on display, sitting in my wheelchair, raised above everyone else, on my own, and sticking out like a sore thumb. Anyway, we took a taxi to Harpa, and, this made me feel quite fancy, I got to queue at the VIP/Guest Pass bit of the box office! We had some time before the concert so, thanks to the guest passes, we were able to briefly explore the cordoned off areas which had some exhibits, and various other interesting and weird stuff going on, I expected nothing less from a Sigur Rós curated festival. We didn’t explore for long as I wanted to join the queue for Sóley, Sin Fang and Örvar Smárason. It would have been a right bummer if having got the free day passes to then not get access to the venue because it had reached capacity. Now, remember how I was feeling anxious about the next bit? Well, turns out I didn’t need to. There was no platform for wheelchair users. I was mightily pissed off. No equal opportunities or reasonable adjustments for the disabled in this venue! I got chatting to a woman who also planned to use the non-existent platform, and I was interested to learn from her that in the venue right next door, also standing, there was a platform. So clearly the venue had the means, and had recognised the need for it, but when it came to this particular hall, they…forgot? Thinking alike we went to the very back of the hall, in the hope we might see over everyone, that didn’t work out, all I could see were people’s behinds. I was extra glad at this point that I hadn’t paid for the two passes. I didn’t feel I could complain though, given I was there for free, and it’s not like they could have set up a platform there and then anyway. But I did expect better, someone made a bad judgement call, which resulted in disabled fans being denied the same experience as able bodied fans. Since having the wheelchair, I’m learning a lot about the world.
But on to happier things. Ultimately I was there for Sóley, Sin Fang and Örvar Smárason, and while I tend to enjoy seeing the band I’m listening too, my ears do work, so I sat back and enjoyed the music. You’ll have gathered how much this concert meant to me, and it was really really lovely. It was a shorter set than I would have liked, just six songs, but that couldn’t be helped. Again, I was delighted that I was able to be there, especially as it was their debut performance, which made it feel that bit more special. After the concert we had a little rest in the foyer and admired the view (Harpa is stunning, inside and out) while the crowds dispersed. I then spotted Örvar in the crowd, so I rolled on over to say hello and to thank him, which I was really pleased to be able to do in person. This was my last evening at Harpa and I had hoped I’d meet Darren too, to thank him for putting up with me and my ten million questions, and to put a face to the name, but it wasn’t to be.
This is kind of off topic, but, while chatting with Örvar I learned that he had previously toured with the Scottish band Belle & Sebastian, with his band Múm. Afterwards I was thinking how funny it was that Belle & Sebastian popped up in our conversation, they keep doing that. I’ve been aware of them since I was a teenager, I actually have most of their albums. But it’s only since I’ve had ME and became part of the ME community that I found out that Stuart Murdoch, the founding member of Belle & Sebastian also has ME. In fact, if it wasn’t for his ME, Belle & Sebastian wouldn’t exist. It was during his time, isolated by this illness, that he began writing songs to express what he was feeling. When his health started to improve that’s when he began to look for musicians to form a band. They formed in 1996. All these years, and I’d never known.
“To talk about ME, it’s my life story. The biggest thing that’s ever happened to me….Every song I’ve ever written is about ME.” Stuart Murdoch at an Action For ME event March 2016.
Sunday, New Years Eve. Again, I spent most of the day in bed and my mum took a day trip to see some of the sights outside of Reykjavik. I did however venture out late afternoon to meet a friend for coffee. I found a coffee shop nearby that was open (most were closed for NYE), and not wanting another anxiety inducing wheelchair experience I walked. Luckily I had brought my walking stick with me. As well as meeting my friend it was also really nice just to walk, to use my legs, albeit unsteady and weak legs. One of my favourite things to do in Reykjavik is to walk around and explore. It has some of the prettiest houses, most of them lined with corrugated iron, and painted pretty colours. So that one hour outing, with the short walk there and back was my only proper Reykjavik ‘fix’. Then of course I went back to bed and stayed there until it was time to head out for the fireworks at 11.30pm-ish. I don’t like to generalise, but, Icelanders are crazy about fireworks. You won’t find perfectly choreographed displays though, they do their own thing. They buy their own fireworks, and then they spend the night blowing them up; in their gardens, in public squares, outside the church Hallgrímskirkja, on the street, on the surface of a frozen pond… I have experienced the insanity of NYE outside Hallgrímskirkja before, but on this occasion I needed somewhere with a seat, and less crowded. So we went to Tjörnin, the frozen pond, which wasn’t far from our apartment. It was a great location to watch the fireworks from, with almost 360º views of the firework lit sky. It was so cold though, and we were both pretty exhausted, so we didn’t stay out too long. We were however treated to a continuous stream of fireworks throughout the night!
Monday. We went home. It was a fairly uneventful day, the same as Thursday but in reverse.
I’ve been home for over a month now, and I have of course had people ask me how it was, and if it was worth it, and I don’t know how to answer. It’s really hard to get excited about the good bits of the holiday, while I’m feeling so dreadfully unwell. I went on this holiday knowing, with absolute certainty that I would suffer on my return, it’s not a matter of ‘if’, it’s an undeniable fact, it will happen. Post Exertional Malaise is THE defining symptom of ME. Going off topic again, but while I’m here, the word ‘malaise’ is so misleading in the context of PEM. Malaise is defined as ‘a general feeling of discomfort’, which is not in the least bit descriptive of what I experience after I’ve over-exerted myself. PEM is a severe worsening of all my symptoms, and it’s brutal. When I think about how best to describe it I immediately think about my worst ever hangover, but combined with my worst ever flu, with the fever, the sore throat, the headache, the aching body, the overwhelming weakness and lack of strength (to the point where I cannot lift my head, my arms, my legs, my entire body), the lightheadedness. Now add a migraine to the mix, along with cognitive impairment, bladder cramps, sleep disturbance, hands that feel as though they’re on fire (Raynaud’s Disease), painful skin, painful joints, painful muscles, ice pick headaches, loss of balance, disorientation, vertigo, orthostatic intolerance and severe sensitivity to light (photophobia) and sound (hyperacusis) in which overexposure makes it feel like my brain is going to swell to the point that it’s going to burst out of my facial orifices. This maybe begins to describe how awful it is. It’s when I feel my absolute worst, and when it drags on, I wish it would kill me. It’s basically a living death, and given I can reach this point by simply washing my hair, having a conversation, or cooking a meal, of course I was going to crash (a colloquial term for PEM, payback is another one) after Iceland, and it’ll probably be a matter of months before I’m back to ‘normal’.
Last year, when I was planning this trip, I needed it to feel alive and to give myself something to look forward to. I also needed it to help me figure out my limitations. Like I said earlier, I was also treating this holiday as an experiment. Before I went, I didn’t know how I would cope while being there. But I got through what little I did by using my wheelchair when I could, I paced myself and rested between activities. I’m sure I was also, to some extent, running on adrenaline, which of course isn’t sustainable. I also didn’t know how severe, or not, my payback would be. I hoped that by making sensible choices and sacrifices my payback would be minimal, which hasn’t been the case. So while my payback has been severe, I have learned something about my limitations. If I hadn’t gone, not only would I have had some emotional fallout to deal with, I would always be left wondering if I could have managed it. Now I know.
Unbeknown to anyone else, while I was planning this trip I did have it in the back of my mind that this could be the last time I go to Iceland, or on any holiday for that matter. And based on how little I managed while there, and what I’ve experienced since I returned, I think it has confirmed it for me. If my ME continues to deteriorate, or even if I plateau at my current level of disability, I don’t think I could do it again and I don’t think I want to. I fear that I have done permanent damage to my health with this trip. Holidays are meant to leave you feeling rested and refreshed, they should not leave you feeling so unwell that you begin to compose your letter to Dignitas. But this is the basis of ME, we are punished for doing the things we love.
I also learned something that I wasn’t expecting. I thought that just being in Iceland would be enough for me, but it wasn’t. It was frustrating being in one of my favourite places, the city that I had once hoped to live in, and not be able to see it. Reykjavík was right there, being dangled in front of me, but it was out of bounds. On this occasion I had a very specific reason to be there, but there would be little point in going back to Iceland, just for the sake of being in Iceland. It seems it’s easier to cope with what I’m missing, when it’s not right in front of me. It does upset me though, if my ME doesn’t improve at all, I’ll never get to see the rest of Iceland, and that makes me feel really sad.
Saying that, however, I wanted to fulfil my dream of seeing Sigur Rós in Iceland, and I’ve done it. And for all I know these concerts could be the last they play in Iceland, I don’t know what the future holds, for the band or for me. What if I hadn’t gone, and then they split up? What if I hadn’t gone, but by their next tour my ME might have deteriorated so much that I can’t attend? It was important to me to take this opportunity, however harmful, while physically I still could, the last hurrah before ME destroys me completely. There’s something really special about seeing a band in their homeland, and in such an intimate venue (1500 capacity, that’s small for them) and they were better than I’ve ever seen them before. That was potentially a once in a lifetime experience. I was also at the debut live performance of the music that literally kept me going last year. It meant a lot to me, to be able to go and support Sóley, Sin Fang and Örvar Smárason, as they supported me. It’s amazing that I achieved these things, and I’m SO pleased I was there.
So while I spent the majority of my time there in bed, I guess I can consider this trip a success? I met my main objectives, I managed the four things I set out to do. Although I didn’t manage the other eighteen things that I had on my wish list, had I felt well enough (in case there’s any doubt, pre-ME, I would have managed everything on my wish list, plus some). But, because of just how badly I’ve been suffering since my return, I still can’t decide if overall, it was worth it. I think, at the moment, the people who are asking are just going to have to accept my very non-committal vague non-answer, that I don’t know. I expect, when, or if, I recover from this crash, I’ll be able to answer differently. In the meantime I’ll snuggle up in my beautiful and cosy knitted Sigur Rós blanket (Christmas present from my mum) and my wheelchair will soon be adorned with a Sigur Rós Norður og Niður patch, which will forever mark it’s first holiday, and make it the coolest wheelchair in town. I would have liked a random encounter with the band, and have them sign my wheelchair, but hey ho, we can’t have everything.
After that long read I think you deserve a treat! So here’s a link to the finished album by Sóley, Sin Fang and Örvar Smárason, Team Dreams. I hope you enjoy it as much as I do, and if you do like it, you might want to consider buying it!
NEW BLOG THING!!!
At the end of each post I’m going to be sharing recent research, news, articles etc on the subject of ME, or anything related, that I think are worth reading. I haven’t posted for a while, so I have quite a few saved up.
The Independent. Time for Unrest: Why patients with ME are demanding justice.
Nature International Journal of Science. A reboot for chronic fatigue syndrome research. Research into this debilitating disease has a rocky past. Now scientists may finally be finding their footing.
The Courier Mail. Australian scientists prove Chronic Fatigue Syndrome is real and have discovered a test for it.
BBC News. I had it all – now I create a new world in a single room. As Prince’s art director, Michael Van Huffel became used to working at all times of day or night. But 10 years ago the debilitating neuroimmune condition ME left him barely able to move – since then he has had to find very different ways of making art, within the boundaries of a one-room apartment.
The Independent. New Migraine Drug Hailed As ‘Incredibly Important’ Breakthrough.
Farewell – A Last Post from Anne Örtegren. Anne was a Swedish ME sufferer and advocate. She recently chose to end her life in Switzerland by Assisted Suicide.
Journal of Translational Medicine. Improvement of severe Myalgic Encephalomyelitis symptoms following surgical treatment of cervical spinal stenosis.
Interview with CFS/ME researcher Dr. Nancy Klimas.
The S-Word. A blog post by Jamison Writes.