IMPORTANT UPDATE - Read me!

Hello,

I know I haven't posted here in a little while. I have had to move my blog and I am unable to provide a link to the new one here (because it would kind of defeat the purpose of moving to a new address).

If you would like to continue to follow my adventures, please go to twitter and search for '@bendyrower' (based in Essex/Cambridge) then send me a direct message and I will send you a link to the new blog - or you can add me on twitter in order to see all my tweets (they are now protected, so only approved people can view them).

The new blog is already up and running with all my exciting news ;)

I'm sorry this is a bit of a pain. It's even more annoying for me! It's difficult to find a way to protect your privacy online whilst continuing to blog. Hopefully this will work...

🚣🏻 - 🏇🏻 - ♿️

Alive again (Part 1)

A short while ago, something sudden, completely unexpected and entirely unwelcome happened. As always, I've tried to put fairly chirpy photos in this article to lighten it up a bit, but the subject matter of this post is not chirpy at all. For no apparent reason, I had the biggest and most dramatic 'low' that I've had in all the time that I've been taking lithium for bipolar disorder. Lithium has transformed my life - for the better - and I really see most of my adolescence and adult life so far as being divided into pre-lithium and post-lithium. Pre-lithium, I was a complete mess. After starting lithium, lots of really tough things have happened but I've been able to cope with them anyway, because the rapid cycling, mixed states, mania, hallucinations and crushing depression were finally brought under control. These tough things were just tough things that anyone could deal with, and they didn't impact upon my bipolar. I rejected lithium therapy for a long time as it has various unpleasant side effects and is a difficult drug to be on, but when I'd exhausted all the other options it became the only thing left to me. I wish I'd started it sooner; after just a couple of weeks my head began to clear and I began to remember who I had been before bipolar disorder first began to take over my life at 14 (or younger - hard for doctors to date these things sometimes).

Me aged 14. The goggles weren't just for the jigsaw machine, they were needed in everyday life.

So anyway, it's been five years or so since I started lithium, and those years have been tough but fairly stable. I wouldn't say that I'm completely 'normal' in terms of mental health, but not having hallucinations is a massive improvement, as is having some stability of my moods. I've been able to live more healthily and work more steadily than before going on lithium, and have found everything easier as a result. Bipolar disorder remains one of the most terrifying things I have to deal with, partly because although the lithium has made an enormous difference I know that I can't stay on it forever, and partly because it is in itself terrifying. If you haven't had it you can't really understand and I don't have the energy right now to try and describe it - maybe in another post.

"The camel is talking to me..."

So anyway, over the last few years I've been feeling fairly OK. Nobody is fine all the time, and I'm no exception, so some times have been healthier than others mood-wise. However, for no reason, two weekends ago, everything suddenly just nose-dived and I felt worse than I could remember since just after starting lithium. It's difficult to explain how I felt. It came on gradually at first, one evening, as a feeling of 'this is difficult to cope with'. I could feel the familiar sensory overload, and I just didn't want to talk to anyone at all, which was difficult as I was out with friends. I felt really sick and dizzy and thought I was going to have a seizure. Luckily John understood and was able to help (including showing the old 'I'm not drunk, it's this dashed medical condition' card), but no-one else gets it and I wouldn't have wanted them around anyway.

Sensory overload.

The next morning I woke up (well, it may have been morning, but it may have been afternoon) and it was as if I were a different person. I didn't know what to do with myself. I couldn't make the simplest decision (should I get up to go to the bathroom or should I just lie here until I die?). I didn't want to do anything. I didn't want to eat, although I knew I had to. I didn't want to take my pills, although I knew I had to. I didn't want to wash or get dressed or even leave the bedroom to go to the kitchen. I didn't want to stay in my bedroom either - I didn't want to do anything, but because I was already in the bedroom it made sense to stay there. I didn't want to read (and in fact couldn't), or watch a DVD. I didn't want to talk to anyone or to be left alone. I didn't want a drink and didn't know how to feel thirsty. I didn't want to move but didn't want to lie still either. I didn't want to be awake and I didn't want to be asleep. Really, I just didn't want to exist.

It's really hard to find a picture of inexistence, so here's one of my rabbit pulling me into a time warp, age 10 (me not the rabbit).

This kind of feeling is bearable for about 5 minutes. The problem is that when you have a whole day like it and you have no idea how to fill it, it becomes unbearable. You cannot deal with being in your head anymore, but there isn't anywhere else to be as you can't physically move. I think one of the hardest things was knowing what to do with myself. I couldn't sleep for the whole time, but neither could I do anything else. I was meant to be going out and doing things with friends, but since I could hardly look at my phone (because it was across the room and I didn't know how to get there) there was no way I wanted to leave the flat and try to pretend that things were OK. I just couldn't - I couldn't do conversation, I couldn't hear anything properly, and I couldn't construct sentences.

Pronoun...noun...erm...verb...adjective... pronoun... pronoun... pronoun verb...stop.

The first day went like that, and as the evening came on something inside me broke and I couldn't stop crying. That made something else break, and the nothingness I'd felt before was filled by one overwhelming desire: to hurt myself. I didn't know how to do it (I still didn't have the energy to do anything) but I hated myself so much at that moment that I just had to try and do something. As it turned out, the easiest thing was to do nothing. I hadn't eaten, the crying had caused a massive blinding headache, and the window was open even though I was too cold. I lay on the floor with the headache, getting colder and colder, and tried to justify my existence to myself. I wanted to die but as I'd sent John out to be with people I didn't feel it was fair to die while he was out. I desperately wanted him with me, but I didn't want to call him back.

Eventually, I had to. The mania side was starting to creep in and I was scared. I had a brief window in which I could ask for help before it was too late, and I was just about lucid enough to realise that that was what *I* wanted, even if it wasn't what the bipolar wanted. He sprinted back and I don't know what I was doing, but I know I wasn't really with it. I know I came round and he was there and although I was so, so unhappy and still so scared I also knew that at that moment the only thing that could have made a difference was having him there. This is something I didn't have in the pre-lithium days, and it's a massive lifeline for me now. The thought of John was what stopped me hurting myself, and his presence was what made me realise that I could survive the horrible mixed state I was in and come out the other side.

So, that was the weekend. Then I had to deal with the week. That desperate and desolate feeling just wouldn't shift, and I was just so crushingly low that I couldn't imagine ever being me again. I was stunned by how quickly it had come on (really just over a few hours) after a few years of relative calm. I was also terrified that this phase would last as long as the first phase pre-lithium (i.e. four and a half years). Most of all, though, I was nothing. This is what depression is - there is sadness and there is anger and there is self-hatred and there is frustration, but above all else there is nothingness. I was completely at a loss as to what to do with myself. I knew that I just didn't want to go out. I cancelled all my plans and withdrew. I didn't want to explain myself to anyone and I didn't have the energy to pretend anymore. I just existed.

I didn't write this - but I could have done.

All this reminds me of this thing that I heard on Call the Midwife (of all things!). It's in response to bereavement, but as grief can be caused by so many things it's applicable in many circumstances: 'You just keep living, until you are alive again.' I love this, and have been saying it to myself for ages (since I first heard it). It's true and useful in so many situations.

So, I just kept living. I wasn't alive, in that nice metaphorical sense, but I was living. I was surviving. And then, overnight, I felt a bit better.  I don't remember much of the process so I can't go into it here. It was lengthy but...filled with nothing. I don't know why or how, but something enormous lifted and I was back to normal me again - albeit a me that was slightly battle-scarred and nervous. Things can go wrong quickly. On this occasion, they also came right quite quickly. A week felt like a long time, but compared to the years of misery I had pre-lithium it was really just a brief taster. It's just scary that these things can happen despite being on track with medication, and despite not having done anything different in the days and weeks preceding the little glitch.

Be wary.

I don't have anything to take from it other than a wary respect for the fact that I still have bipolar disorder. I am not heartened that it went away quickly, and I don't want to 'see the positives'. I'm annoyed it happened, because I missed a lot of things that I'd wanted to do. I'm also annoyed because it has reminded me how fragile my mental health is. I'm annoyed because other people won't understand it. I'm annoyed because people will try to say, 'oh, but you feel better now', as if that's all that matters. I'm annoyed because people will try to rationalise it, when it is something that can't be rationalised. It strikes completely randomly and the nature of a mental illness is that it stops the brain from thinking rationally - so don't tell me that everything will be fine in future, because you know nothing (and nor do I, as it turns out); bipolar disorder can and will strike me down whenever it feels like. And don't tell me that I was just being silly. Bipolar disorder is about mania and depression, which are ugly things. It's not about having a cup of tea, curling up with a good book, taking it easy for a bit, or having a good cathartic cry and feeling better afterwards. It's about worthlessness, pain, hatred, loathing, panic, fear, confusion, destructive behaviour, hallucinations, dying, rage, and, paradoxically, NOTHING. It's about a demon which inhabits your mind and your body and makes you dance to its tune, destroying your own life and taking you over completely until you are nothing. Nothingness really defines the whole thing - the goal of bipolar is to make you nothing; it does this by making you feel first nothing, then all the negative emotions it can put together, until you crave the despair of the nothingness as a sanctuary from the manic fear which grips you.

From Hyperbole and a Half.

So if you want to tell me, 'oh well, it didn't last long this time' or 'I'm sure it won't happen again' or 'you coped with it this time, you can cope again' or 'you're so strong/weak/brave/pathetic' or 'just think about the positives', then my response would be very rude and not appropriate for the hallowed pages of this blog. I am angry at bipolar as I already have one illness which has a grip on me and I don't need another. I cannot control the bipolar disorder (beyond taking the drugs, which I always do) so any kind of 'why not try <insert unhelpful suggestion here>?' is not necessary. If it would make a difference, I would already be doing it. It is a chemical problem, not just me needing cheering up.

 

All of this said, I do not want someone to make this all disappear. Like my EDS, this is a big part of who I am. Sometimes, the manic phases of bipolar disorder can be fun and even productive! Most of all, I do not want someone to change it. I do not want someone to take it away from me. I do not want someone to try to pray it away. I do not want that because although this scares me and I don't like it, it is part of me and we are in some way defined by the things that scare us and the way we react to them. Wishing those things away is not conducive to good mental health, nor does it make you an amazing person. Like a family, a health condition can be something that you reserve the right to complain about from time to time, but you recognise it as part of who you are and part of what makes you you.

They're bonkers (not as bonkers as me) but I love them.

Bipolar disorder is difficult and unpleasant, but suffering from it has made me stronger and more adaptable. I don't want to lose those things. This doesn't make me strong or brave, it just makes me a normal, regular person, who has issues and knows that nobody has a life without problems and so instead of wishing them away or on someone else we just need to get on with it, truck through the rough bits, and come out the other side - battered, bruised, bleeding, hair in a mess, face in a mess, unwashed, a little dehydrated but ALIVE AGAIN.

Adventures with Buster

I've had my new chair for a couple of weeks now and I'm still loving it! After the initial frustration with the pushrims, Draft Wheelchairs really came through and sorted new rims for me in a matter of days. The new covers are stitched around the rim and have an extra rubbery coating on top, which will get easier to grip with as I wear them in a bit. They're a bit slippery at the moment (partly because I've been going out in the wet so much, and partly because they need to be worn in) but they are sooooo much better than the ones I had before and I am so happy with them! I can finally enjoy my new chair :)

They even work when I'm actually moving instead of just posing!

I've had a few nice trips out with my chair already, including one very rainy trip down the busway (Cambridgeshire Guided Busway, which is excellent for wheeling) and one training session, although sadly there were only three of us there including me. Getting used to the chair is something I'm enjoying. It definitely feels a lot lighter than the old one, and I know that I'm going further with each push. There is one hill at the West Cambridge site, where we often train as a group, which previously took me about 100 pushes to get up, but in the new chair it only took 70 the first time I tried - and that was without me even trying very hard! This is a really good improvement and I'm hopeful that it will translate into a lot of time over a longer distance.

Training at the West Cambridge site.

As well as having a gentle potter around west Cambridge, John and I went on a trip to the busway with both the club chair and my new one. The idea was that John would have a go in the club chair (for which the seat is only marginally bigger than my new one; fortunately he has slim, manly hips!) and would generally keep an eye on me and also hopefully have some fun.

Support crew walking to the busway.

Unfortunately, it didn't quite work out like that...John turned out to be a giant pansy a bit too tall for the chair to be comfortable, and the gentle spitting that the sky had been doing when we left the flat had turned into pretty torrential rain! I stayed with him until we got onto the busway itself, but it was too easy for me to forget that he wasn't used to manoeuvering the chair from the inside, and that he wasn't used to how uncomfortable those gloves are until you get used to them (how I moaned to begin with!). He was also pretty slow, but, you know, first-timers and all that... Anyway, once we were safely on the busway I got bored of waiting and just went on ahead, thinking that he'd catch me up eventually. I went about two miles and waited under a bridge. And waited...and waited some more... Eventually I decided to go back and see what had happened to him, which meant braving the rain again. He was under the first bridge, out of the chair, and looking a bit peeved! Once he'd had a little moan, we agreed that I would do another run to the second bridge and back and then maybe call it a day. This did give him the opportunity to take some pictures of me, which I suppose is a bonus as it makes it easier to decide how to illustrate this blog!

Soaked through but loving it.

The second run to the bridge and back gave me an opportunity to fiddle a bit more with my compensator. Fine-tuning the compensator is a mysterious art and it seems to be an endless quest to get it right, which no-one ever actually accomplishes. It's very difficult to give it a fair test, because it's automatic to make little adjustments to your steering through weight or hopping the front wheel a bit, but these little adjustments disguise what you're trying to achieve with the compensator. I think I have it set up nearly straight and we shall just have to see how that goes, but it's taken me about 6km so far to try and decide on a short-term solution! On the way back, I ended up doing a sprint for about 400m (the reason for this will be given in a future article; for now, just assume that I felt like sprinting for no reason) which was really useful for me to do and also allowed for some more good photo opportunities (thanks John!).

Another thing of note re the new chair is that I have bought something for it - I wanted a sticker showing a Halifax (the plane that this chair is named after, and which my grandad flew in the war) but I couldn't find any anywhere, so for the time being I've bought a stamp with a Halifax on it which I will tape onto the frame, where I can see it clearly when I'm sitting in it. It's a reasonably large stamp so just the right size.

Today, I'm going to the track to buy a track card and hopefully to have a go on the track with the chair, which I haven't been able to do yet. I want to try and set up some lanes on the compensator and hopefully just have a nice relaxing session getting to know Buster even better.

St Ives 2.0 and Chair 2.0

Last Wednesday we went to race at St Ives again. We were quite a diminished crowd - just me, Claire and MJ - but despite this and despite illness we had a good time and all came away with some cracking results.
The fact that we had been to this track before and so knew our way round was helpful. I knew where to go to collect numbers and to pay, to go to the loo, to find the paramedics (!) and where to be out of the way whilst warming up. This time we decided to colonise a small bit of track tucked away just off the main racing track on the first bend - there was plenty of space for the three of us, and it saved fighting our way up a little ramp and round a bend with three racing chairs as well as day chairs and all our kit.

...we have a lot of stuff. Sadly no donkeys/mules.

Like last time, the first race was the 100m. After my experience last time of not going off straight and struggling to find a straight line all the way through, I had spent a bit more time setting up my compensator and locking it into place with the screws so that the force of the start wouldn't make it slide off. The start of the race was slightly delayed as MJ had a bit of foot strap trailing on the ground and it was surprisingly difficult for us to relay this to the officials! They soon got us ready, though, and we were underway. I pumped nice and hard and concentrated on staying straight. I think that this whole going off straight thing is something I will have to work on quite hard for the 100m. I still don't have it anywhere near perfected and I think it must lose you a lot of time. However, on this occasion, I managed to come first and to beat my PB by quite a long way - my previous PB was 25.7 from Chelmsford; this time I managed 23.99. Just squeaking in under 24 seconds felt really good!

"<"

After the 100m we had a bit of time to rest before the 800m. MJ wasn't feeling too great so was trying to use this time to decide whether or not to race. This is a really difficult decision to make - obviously you want to race otherwise you wouldn't be there, but if you think it will make you feel worse afterwards then you do sometimes have to be sensible and not go out and destroy yourself. Claire and I didn't want to make the decision for him and we didn't really know how bad he was feeling. We would have supported him whatever but we were pleased when he decided that he would take part.

For the 800m, we were set off in separate lanes again, and allowed to break to the inside lane at 100m. It has to be said that although I felt better this time I still wasn't feeling quite as on form as I would have liked - things still felt heavy and difficult. By about 500m my reflux was quite bad and I was doing my best to re-swallow the hash browns that I had optimistically nibbled on before leaving! I managed to keep everything inside and even had a bit left in me to accelerate down the final straight. What was really nice was that there were quite a few people hanging about and they all cheered me on. I finished first in a time of 3:31.99 - this was actually slower than the last time I raced (by about 0.9s), even though I didn't feel as tired. I suppose it shows that the numbers don't always match how you feel.

I would rather my food didn't try to say this.

After finishing my 800m race, I noticed that MJ wasn't too far in front. Despite feeling absolutely terrible, he had kept going into the second half of the race and was fighting on hard. Since I'd cooled down around the first half of the bend anyway, I decided to follow behind him to carry on cooling down, offering encouragement and generally just cheering him on. I didn't really know at the time if this was welcome or not but fortunately afterwards he said how proud he was to have finished, but that he would probably have retired if I hadn't been there behind him. I was amazingly proud of him as he beat his PB by 5.75 seconds - a huge margin over that distance, especially when he was feeling really ill (turned out that he needed a pretty strong course of antibiotics, so it was even more impressive!).

Afterwards, when we were taking the chairs back to the cars, one of the officials was chatting to us and lending a hand. He said that a bunch of them from Cambs had gone to help in London for the Olympics and Paralympics, and that the Paralympians were so much nicer and more fun than the Olympians. We weren't really surprised by this! He loved how supportive we are of each other which is also one of the things that we love about doing the sport. It was reassuring to hear that this level of support goes all the way up to Paralympic level.

The day after St Ives, MJ and I had a trip to Huntingdon to pick up my new racing chair. At this juncture, I'm going to insert a quick plug for Draft Wheelchairs, who handled the order for my chair. They are so friendly and so helpful. When I went to collect the new chair, obviously I took my day chair along too, partly because I needed it and partly because I wanted to pick their brains about my jazzy new front wheels (they light up, and I love them, but they were a bit narrow for the chair and were rattling around a bit even with five washers in each side, so I wanted a better solution). I didn't buy the chair or the wheels from Draft but they took it off whilst I waited and made and fitted new axles so that now the front wheels run perfectly - and didn't even charge me! Second part of the story of why Draft are so great is below. For now...

MY NEW CHAIR IS BEAUTIFUL! It's bright and sparkly and (almost) everything on it feels smooth and sophisticated. There is just one problem which is quite a big problem - the grip on the push rims came off the right wheel in my first outing with the chair. I knew that this could happen with this design, but I was a bit pissed off that it happened the first time I took the chair out. This is a major problem. If the grip is hanging off, you can push the chair but only very slowly and awkwardly - I suppose it would be a bit like going for a run and suddenly finding that your shoelaces have disintegrated.

'Top End'...!

I took some pictures (see above) whilst I was out on my first session (which was otherwise lovely, despite the baking heat) and emailed Draft when I got home to ask them to shout at the Top End people in America and also to ask if they had any suggestions. Their solution was better than I would have imagined - I had just been thinking about some really strong adhesive that I would have to keep on reapplying, and had also considered a series of cable ties holding the cover to the push rim, but they said this: "I’m going to get a new pair of push rims covered for you Monday. Not glued on, will get them sewn on so we can exchange them for you." Basically, again, they have taken something which is not really their problem and sorted it for me. Heroes! They didn't want any payment so I took a box of Miniature Heroes along - seemed appropriate.

Ladies and gentlemen, the staff at Draft Wheelchairs UK.

Narrow defeat...and a win.

I just realised I never wrote anything about the smaller competition we went to recently in St Ives, Cambs. This was held on a Wednesday evening as part of the Cambridgeshire Athletics Association Evening Open Meetings (a series of three race days held in May, June and July). Since in under a week we'll be having the second of these meetings I should probably get the first one written up now!

There were only two races at St Ives - 100m and 800m. When we arrived at the track, our first thoughts were that it seemed much smaller. It was only six lanes (compared to Cambridge's 8 lanes, or 10 for the last 100) but it also somehow looked shorter. We were assured that it wasn't, and judging by our times I'm guessing they were telling the truth, but it was an interesting optical illusion! 

I got my chair set up and headed out as soon as I could to make sure the steering was set straight. There were lots of other (able-bodied) athletes running their 100m races, so we had the back straight to ourselves and a few others warming up. I wasn't feeling great, to be honest - OK, but a bit slow, heavy and tired. I knew I wasn't really on top form but I felt I should be OK to race anyway - and after all, I'd come all this way, so it would be silly just to go home.

The start of the 100m. L-R: MJ, Naomi, Claire, me, Abbi, Rebecca.

We lined up for the first race and just about had all six racers in the right place at the right time! In this race, I had a rubbish start, then leaped across a couple of lanes and just couldn't get straight (clearly hadn't set myself up as well as I'd thought initially). I finished in 25.8, which was 0.2 seconds behind the fastest (Naomi, 25.6). That's a bit irritating, but it was quite a long way ahead of third place (Claire, 29.1).

About 30m in.

I felt a bit rubbish after the race as I knew I'd been bad technically and physically - I hadn't felt strong and fast, nor did I feel in control of my movements. Still, at least I felt that I'd raced badly but still had a respectable result.

The start of the 800m. L-R: MJ, Claire, Rebecca, Abbi, Naomi, me.

We sat around for a little bit waiting for the 800m race. The runners doing 800m were being set off along a curve and were allowed to take the inside track straight away. To our relief, we wheelies were assigned lanes which we had to stay in until about 100m in. Before this race I felt cold, shaky, achey and tired. I really wasn't feeling good, but 800m isn't REALLY that far and I knew John was around so that if I needed help afterwards I would have it. I suppose I might also have thought that if I started and felt too bad I could always stop, but I really don't know what it would take for me to give up halfway through a race like that - I'd probably have to lose consciousness...

The 800m race getting underway!

Anyway, for the 800m I had lane 1 which is not a nice curve to race, but does mean that you don't have to worry about coming over to the inside lane. My compensator wasn't really set up for it, which was a bit annoying since it meant that for 400m of the race my steering was definitely not right, and in the 400m of straight racing it was decidedly dodgy! 

Coming round the first bend.

Anyway, the race started and I got a good start to get ahead of the rest of the field. However, by 200m I was already feeling tired. My breathing was ragged and I felt as if there wasn't any air coming in. Going through 400m, I knew I was ahead, but had no idea how far. It was quite handy listening out for the bell signalling to the next racer that they were on their last lap - the time between the two of us going through the halfway mark felt reasonably safe, but I knew I had very little left to give, and couldn't afford to slacken off. I forgot about the fact that I was only halfway through and turned my mind off. This is a useful technique that takes away all those thoughts of 'I can't' or 'I need to stop'. I suspect it might be something that either you can do or you simply cannot do. At the moment I haven't refined it enough to allow me to engage in rational, tactical thought at the same time as switching off the negative thoughts, but I can replace it mentally with calm encouragement.

A still of me from a video (hence a bit blurry - sorry!)

Coming through the last 200m, I no longer needed to worry about turning the negative thoughts off - I was now at the point of the track where I had to finish the course anyway just to be able to get off the track. I turned down the final straight and realised I had nothing left to give. At Chelmsford, I was able to do a nice sprint finish and really power it down to the line. At St Ives, I couldn't do that. I just about held on to my lead and crossed the line in a time of 3:31.06, ahead of Naomi in second place with 3:34.92 and Rebecca in third with 4:07.95. Compared to Chelmsford, I had slowed down by 5 and a bit seconds. Probably not too bad for how awful I felt, but a considerable change nonetheless.

After the race, I got myself off the track and sat in my day chair. I then felt strange, so lay down for a bit on a useful gym mat that someone had left lying around to cover up some cables. I then had one of my fun exercise-induced seizures, which was unsurprising really given how tired I had been before even starting. At the same time, Claire decided to cough up her lungs again and went hypoxic, meaning that an ambulance was called again. When the paramedics arrived they were rather bemused to find that the girl lying down in the middle of the path with a load of St John's Ambulance blankets on her was not actually their patient! Anyway, after my little moment (and quite a few Haribo minions) I felt a bit better. Once we knew that Claire was being looked after, we got the chairs sorted out and John drove me home. I make it all sound like it didn't take long, but I imagine it was at least an hour. I don't know. I wasn't fully with it...

Anyway, that was last month. This is now this month. This month I am aiming to be as relaxed as possible in the run up to the competition. I want to feel fit and healthy and to race well instead of just surviving. Watch this space!

Going away - excitement and anxiety.

Soon (in just over a month) I will be going abroad for the first time in ages (I can't remember the last time I went abroad, but I think it was a couple of years ago). We will be going to Iceland (Reykjavik) for a week on a choir tour. This is both exciting and scary, as the last time I went away I was going to meet my mum, so had her to help me with mobility and all the other problems, and the last time I went abroad without her I was much less disabled than I am now. 

Although I did have to lean on surrounding infrastructure to remain upright.

Somehow, my 'to do' list for Iceland extends far beyond the usual researching the area, choosing clothes, packing toiletries, and so on. To give you an idea, here are some of the things I need to be thinking about now:

Ring Easyjet. Tell them about my wheelchair. Make sure they can help me to get around the airports, especially on the way home when I will have no-one to help me from the choir, as I am travelling back a day early and having to take two flights (transferring at Belfast).

As long as I don't turn up like this I'm probably fine.

Ring the hotel (pray they don’t only speak Icelandic). Inform them of wheelchair. Ask for extra pillows/seats so I can sleep sitting up, and a stool to sit on in the shower. Warn them about what might happen to me whilst I’m staying!

I hope they believe this!

Instruct my friends who are coming with me in what to do in case of: seizure (different types of seizure requiring different responses), fainting, POTS, sickness, weakness, needing salt, needing sugar, medication problems, accidentally eating foods with milk in.

Somehow I need to teach them the difference between these two...

Google image search Reykjavik to see how easy it will be to get around in my chair (I also tweeted the tourist board but they haven't got back to me yet).

It looks kind of flat...apart from that mountainous thing...

Get a letter from my doctor to allow me to take an extra bag onto the plane (which will contain medication, blood sugar monitor, blood pressure cuff, splints/braces/supports, physio equipment, tape, health logbook, etc). I will probably also need him to write a letter explaining my medical history to anybody that may need to treat me abroad.

I'm hoping it's acceptable to take this much medical equipment.

Remember to pack little things that will make a big difference to my health e.g. eye mask (long Icelandic summer days).

Icelandic horses enjoying the night.

Pack all my medication (this will take a good hour to sort out) including extras in case of delays/transport cock ups. Make sure medication is kept on my person at all times, but that I have spares of everything in my luggage just in case. Somehow foresee every possible problem so that I remember to take medication for any problem which could potentially rear its head abroad (e.g. steroid eye drops for iritis - otherwise I have to go to hospital).

Not keen for this to happen in Iceland.

Prepare medical information in English and Icelandic explaining allergies and EDS in case I need to go to hospital.

I need to make one of these in Icelandic...

Order an EHIC and find also appropriate private medical travel insurance.

Decide which sticks/crutches and which joint supports to take (hampered by knowing that I will need help carrying things on the way home).

Rig up a system of attaching my suitcase to my wheelchair so I can be as independent as possible during transfers. Ensure that all medication needed to eat anything is easily accessible at all times when I am travelling as I will be travelling home over lunch and dinner time. Also ensure that all medication required for me to deal with the after-effects of eating is accessible (e.g. anti-emetics, antacids, blood sugar test strips, etc.).

Because this is not ideal.

Plan how I am going to manage my energy across the whole trip. Make sure I factor in time for plenty of rest. This is especially important since as soon as I get back I will be going to the RDA National Championships, and then coxing Town Bumps in Cambridge the next week.

You'll either get this, or you won't. If you don't, never mind.

Learn about the possible problems in travelling abroad with a wheelchair - various government websites provide useful information and advice on this.

These are just the things I've thought of off the top of my head, but they make quite a daunting list. I'm sure there are more things I could and should be doing but I might have to wait until they occur to me!

I'm looking forward to going away and I'm very keen to go to such an exciting location. However, it will be my first foreign holiday with a wheelchair (although the last one was done on crutches, and flying out to meet my mum was much easier than I expected). I did use a chair in the Isle of Wight last year, but I feel that this will be a very different experience. I'm looking forward to doing it so that I know it's all manageable, but I'm still worried about some aspects of accessibility. I'm also very worried about night time and being able to sleep enough. There's something about swallowing down the bile and vomit in the middle of the night when everyone else is asleep that makes you feel very alone. This is hard enough at home but will feel even harder away. Hopefully I can just cope with it and keep myself calm at night and enjoy the daytime. Even so, a part of me will be a bit relieved once it's over.