What the hell am I complaining about?

Another trip.  This time I tried a different airport, and made all kinds of new arrangements.  Probably the most sensible, because of the timing of my flights, was to book a hotel room, so that I could travel the night before, and get a decent night's sleep before check in:  This flight left at noon instead of 9am:  the hotel I stayed in was a short (one stop) bus ride from the airport, and provided a free shuttle service to the terminal:I can't believe how much difference a night's sleep, and a pre-flight shower made to the start of my journey.  I arrived at check in feeling cooler: more awake, and in far less pain than I have at the start of any of my journeys in the past couple of years.

Now.. I use a particular website to find the best possible price for hotel rooms when I need one: and this was a real bargain, especially since I flew out of one of the London airports. The hotel was small, and the room was fairly basic, but comfortable.  The proprietor even moved me to an ensuite room, rather than the single with shared bathroom that I had booked, which I really appreciated (sometimes, a long, long warm shower can ease my pain and stiffness: but it is hard to spend 30-40 minutes in a shower when there is a queue for the bathroom). Now maybe I kind of wore the shower cubicle rather than stood in it (SMALL!!) but waking at a reasonable hour, having time to take a shower, dress, AND put on some makeup in my usual slow and clumsy fashion, knowing I was going to get to the terminal in plenty of time was such a relief.

The airport itself... oddly, despite it being so much bigger than the one I have been using, was very easy to navigate. I was early enough that I could get a coffee and do a little shopping for last minute necessities (ruined 2 pairs of tights while navigating my way around the departure hall. (One fall, two trips, and a clumsy misjudgement of distance.. I hate fibro)  before checking in, handing over my suitcase, and going through security, which took all of 10 minutes.  Again I had to rely on the cursed stick, but because there were so few people going through at the time, I didn't have to stand for long, and trundled off to find a seat to wait for the boarding call,

I knew that I was going to suffer both during and after the flight. The nasty thing about fibromyalgia is that when it flares up, it affects everything. The fatigue is debilitating:  the confusing, memory -blanking, concentration eating fibro-fog is horrible: but the constant burning, stabbing pain is both draining and seemingly impossible to ease. My hands and feet swell and become painful, stiff and tight. Muscles cramp and twitch, and fill with the awful lactic acid burning of a severe gym workout.  Being able to move around a little can help, although I become inordinately clumsy and prone to falls even with the damned stick..  But on a 7 hour flight in economy, that becomes almost impossible. Even if I can struggle out of my seat, the aisles are so narrow that walking up and down them is impractical:  and trying to do so without taking a header into the lap of some bemused stranger is a constant danger. Then, getting off that plane, and trying to stagger from that terminal to the gate for my connecting flight is agony. Especially if I have to collect my checked bag and go through the whole security process again before I can sit and recover a little before the next, 5 hour flight.

Please don't mistake me:  I CHOOSE to do this, and I am grateful for the ability to do it.. I don't resent the plane: the airport or the journey:  what I am frustrated with is that my physical infirmities usually manifest most strongly right when I need to be at my most capable.  I have always been independent and determined:  but I am ashamed to say that there have been times when I have been reduced to tears because I just can't make my creaky, aching, ageing body do what I need it to do, and I don't know how to ask for help.

Yes.. I'm a stubborn, bloody-minded old fart.. and I know that no matter how much I might struggle, I still won't be able to wipe the huge, sappy, excited grin off my face whenever I remember that I'm really, really doing this.

How hard can it be?

I had to make a trip to the shop today. For the past 2-3 weeks I've been dealing with a particularly stubborn respiratory infection which has made getting around even inside the flat.. interesting.. to say the least. Frustrating and extremely irritating to find myself out of breath from simply taking the few steps from sofa to bathroom or kitchen:  and since I have spent most of the past 3 days asleep, I was determined to get this done.  I knew it would take me a good while to walk there, so... out came the bike: and (bloody minded as I am) I set off on the 5 minute ride.
Except, because of the state I am in right now, it was more like 10 minutes, with me coughing and wheezing almost the whole way there: dragging myself around the shop like a 95 year old, and then taking a good 15 minutes to ride back (mostly uphill). It took me at least an hour to recover, and I was too exhausted to actually cook anything, so I ended up ordering takeout.. although that will last me at least 2 days, so I refuse to feel too guilty about it.

I hate being ill. I particularly hate being ill if it means that I struggle even more to do the day to day stuff. Living completely alone for pretty much the first time ever: having no family or friends nearby... being ill is not an option for me..  minor ailments are an inconvenience:  more severe problems curtail everything. Yes, I can go online and shop if I'm not well enough to go out and do it in person:  but what if all I need is a pint of milk?  or a loaf of bread?  do I really want to pay up to £5 to have that delivered?

it sounds like such a small thing when I say it.. but to be struggling so badly for even this long, is actually frightening. It reminds me that I am getting older:  it makes me think about how things could be in 15 years, or 20.  And it made me think also about how much I value my independence.   There are areas of my life when I am limited by disability: there are things that I find difficult on a daily basis. Days when I dress in pull-on skirts, and teeshirts or sweaters, because I don't want the embarrassment of having to fumble with fasteners. For the same reason, I have many pairs of laceless shoes... for those days when my fingers and hands are too stiff and painful, or too clumsy to allow me to tie a shoelace in less than 8 or 9 attempts: or to fight a button into place. it makes me feel old and slow and stupid, and I hate it. So I make ways around it... and the same applies to my travels.  when I am having the very worst of times, and I feel that my body is failing me, I have no choice but to accept it, and make use of the services offered to me:  less so on the days when I have a little more control and a little less pain. Its all a matter of degrees.  However much I might wish it, my difficulties will not go away: but there are ways that I can circumvent them, or avoid having to surrender to them entirely. Adapt and survive in a small way.

So.. I begin to plan for my next trip. I'm already familiarising myself with the website for an airport I never used before: I have looked up details of the hotels closest to it, because it will make more sense for me to travel there the day before the flight, and maybe for once, I should try to get a decent rest the night before so that I am rested for the flight, and can arrive looking a little less frazzled and exhausted.  I'm already making lists of the little I might need to take with me; and looking for trains and shuttles.  There is an excitement in it; an anticipation that I love. And of course, the knowledge that it means I get to spend a little more time with one who means the world to me.  in my head, I;m already on my way

There's always something

Today was hard.

I pushed myself to go out.. I belong to a writing group that meets once a month: and this month's meeting was today: so I went. It took days to persuade myself, not because I don't enjoy it; but because it is hard for me to be around other people when I feel anxious or stressed.  I know that both of my conditions are triggered and worsened by both of those feelings, and I become more and more uneasy and anxious that I will find myself overwhelmed, and not be able to control the trigger and the reaction.

In a room full of people who see me regularly, that is bad enough..  on a plane full of fellow travellers, and with no way of removing myself from the situation, the idea of it is terrifying. That is why I am so grateful that I enjoy the process so much.. and that every journey is made with complete strangers: people who know nothing about me, and who I will likely never see again... because if they were ever exposed to the strangeness and unusual behaviour that would result, I would at least have the comfort of knowing I won't be sitting next to them on the journey back....

There are times when it is very hard for me to be accepting of the way I am. I tell very, very few people my diagnosis:  in the past there have been those who have found out and immediately shunned me. people who for years I have thought of as close, dear friends suddenly became either dismissive and unavailable, or worse (for me, at least)  began to behave so nervously and cautiously around me that it made me impossibly uncomfortable. So now, I don't mention, disclose or discuss it, even with medical professionals, unless they are directly involved with helping me to manage it.

HOWEVER...  now that my previous travel insurance has lapsed, I find myself in a quandary. I need to have cover, obviously: but to be properly insured, I have (again) to go through the explanations and confusion to make sure that if something should happen, my cover won't be affected because the company wants to suggest that the situation was due to my MH problems. It is far easier to get them to accept and understand a physical condition, and how that can affect me.  The initial application isn't the problem: its the follow-up call to get more detailed information that really does it.  I felt sorry for the person who took my call when I applied last time: they were unfailingly helpful and polite: but their confusion and uncertainty was obvious:  and I can guarantee that the 5 minute pause while I was on hold was purely due to the fact that they could not find my particular condition on their drop list.....

I know.  I'm talking a lot about 'conditions' and not offering any real detail to explain why its such a problem.. but that's the point. If I detail it here, there is a chance that at some point, others will read it. And that those others will include people who know me.. even under my user name:

and then the awkwardness...

One Way Thinking

It started off cold again this morning. I had the windows open to air out the room a little, and was listening to the dawn chorus wrapped in the biggest, chunkiest sweater that I own..

I am suffering, at the moment, from a weird version of insomnia. I am tired:  exhausted even: but sleep is coming in short bursts rather than full nights,  so I find myself using the time to catch up with things that I have been neglecting. writing letters that are long overdue: reading books that for months have languished on shelves (usually, a new book barely makes it over my threshold with at least half of the first chapter unread) sewing on buttons: dusting, tidying... catching up with the tv programmes I recorded,,, I'm used to sleeping badly:  its one of the more debilitating symptoms of fibro: but this is excessive even for me. And of course, I am making list after list in preparation for my next trip. At least the 'to pack' list is much. much shorter this time:  I'm not going to need to take very many clothes with me, as I was very generously invited to leave a bag behind the last time..

I guess. at the moment, I feel as though I'm kind of in limbo.. I'm doing what I need to here: looking after the flat: making sure I pay bills and buy groceries, and do the ordinary, day to day stuff, while I'm actually marking time until I can get moving on my next trip. It isn't that I don't like my home.. or that I don't like spending time here: its more that there is so much for me to look forward to that I can't wait to get going again.

There is a part of travelling that I seldom consciously look at: maybe because it isn't (for me, at least) exciting or fun: lately, it has been the part of my travels that I least look forward to: and that is the journey back. I spend weeks planning for a trip to the USA: choosing clothes to pack: deciding what else I'd like to take: looking at events or places that I would like to go to...  the only real planning that I do for the return trip is to make sure that I know from where, and when the flight leaves: and to be sure that I book the rail ticket (and can pick that up at the station)  Packing for that journey is usually a rushed, resentful affair, undertaken at the last possible moment, with the maximum amount of grumbling, and (usually hidden away in secret) a few tears, because leaving can be hard..  The trip back  from there always seems so much longer and more exhausting:  the weather darker and colder... and it always, always starts way too soon for me.

On my shorter trips: the occasional weekends away: rare visits to other cities, there is a difference. The reluctance  to leave: that unwillingness to return to the mundane and familiar still bothers me: but that feeling of being uprooted: of leaving a part of me behind is not there, I can be packed and ready to check out of a hotel hours before the required time: there is no longing for one more look around the place: one more hour just sitting peacefully:  a last walk down my favourite street..to a degree, I suppose that is because a part of me knows that I can always revisit: that there will be other weekends.  And, more importantly, on those trips, when I begin the journey home, all I am leaving behind is the place and the things about it that I remember. When I leave the US, I am leaving behind something far more precious and important to me: something, and someone that makes up a huge part of my life now: and no matter how hard I try to make it so, flying back here no longer feels like coming home.

Where and When

I am not widely travelled,

There - I said it.  Much as I love every journey that I have made, I have actually been to very few places, and only 3 outside of the UK.  partly, this is due to my own issues: it took a lot of courage to close the door behind me for that first trip overseas (Paris, 2005. alone): but the whole, slightly crazy experience had me immediately hooked.
The other reason for my lack of cosmopolitanism (its a word.. !) was the attitude of the parents. The mother particularly did not hold with international holidays:  her attitude was one of 'why should we go overseas when there are plenty of lovely places here in the UK to visit.'  and besides, here, you know people speak your language: you recognise the food, and you can get a decent cup of tea when you want one...   so the family holidays I recall were usually spent in a static caravan on a pretty site in the West of Scotland. I loved them: revelled in the unaccustomed freedom of being let out in a morning, and only being called back for meals and bedtime. And I can't say that I felt deprived in any way:  we were not a wealthy family, so those holidays were hard-earned: paid for by creative adjustments to the weekly family budget, and as much overtime as they could squeeze out of their employers. Other times, there were daytrips to the coast (I remember many fish and chip lunches eaten packed into a car with The Goons playing on the radio, and rain hammering on the roof)  or being dragged around various churchyards so that the father could pursue his obsessive genealogy habit...  Durham.. Barnsley.. Stockport. All the beauty spots.

Later, if I got wanderlust, I would often just pick a place I'd not been to, or hadn't had the opportunity to explore on one of those graveyard safaris, get on a train and spend a day.. or a couple of days, wandering around in a blissful daze. Some places may well surprise new visitors:  Leeds, for instance, was lots of fun.. Durham has lots of little nooks and interesting back streets.. Leicester is a treasure trove of cultural variety (I have to drag myself out of the sari shops,  and close my eyes passing the bookshops!)

The trip to Paris, I made via the Eurostar. Maybe some time I'll talk about what happened after I arrived at Waterloo (what a fun, nutty night)  and I packed so much into the shortest 3 days ever..  I hit the Metro like a rocket, zipping all over the city to take in as much as I could....  I know I will be going back there some time, because there was just not nearly enough time to see, and explore, and experience..

Which brings me to the picture on this post.   Budapest: November 2007: an entire, blissful week.  and my first ever commercial flight:  2 hours with the most unpopular budget airline. It was cramped: overly warm, and loud: but I loved every second: pressing my nose to the window like an over-excited 5 year-old desperately trying to see through the cloud cover...   and once I was there, I left the hotel before 8 every morning, and was seldom back before 9 in the evening.  There is a fantastic Tram system that takes in BOTH cities. and a 4 day pass cost around £10 at the time: it could also be used on the metro and buses: so I made the absolute most of it, and hit every tourist site I could, as well as just hopping on and off in random streets and places so that I could look around. I found some amazing little green spaces: squares lined with trees and benches:  gorgeously ornate shop fronts still bearing bullet and shell scars from the 1956 uprising.. a huge shopping arcade, and at least six different supermarkets to try (I found it hysterically funny that Tesco had opened about 4 stores there not too long before my visit.. )  Not only that, but I found out that the main mobile phone provider there was the one I had my phone with... so I was able to top up, and make calls home.  I even found an internet cafe where i could get a bite to eat for less than a pound, and email pictures back home.. Budapest is a stunning, lively, beautiful place, even in the depths of a bitter winter (rain, hail sleet, snow, gales.. all in one day!)   I badly want to go back and see what it is like during the summer too: but that could be risky. I didn't want to leave at the end of my last visit:  the temptation to move there was so strong, that only the realisation that the one word of Magyar I managed to retain (tej=milk)  would hardly get me by... but languages can be learned: and there are some lovely apartments in the old city.....

Some Notes on Packing.. and why its so damned hard!

Until a couple of weeks ago, I had...*counts" five suitcases. Well.. I say suitcases:  it was actually two enormous wheeled holdalls. one huge suitcase, one small one bought two trips ago because I couldn't cram everything I wanted to take with me into one of the giant holdalls.. and the one I bought on my last but one trip that came with a matching weekend bag and toiletries case.  Five cases....  and three of them easily large enough to hold enough clothes and necessities for two normal people for a two-week holiday.

Now.. admittedly, I was going to be staying for longer than that:  and a couple of the trips were made in winter, so I needed to have sweaters and boots (ahem.. well.. maybe I didn't NEED the boots.. but hey.. girls do this stuff)  but I really needed to get a grip.... dragging a 23 kg holdall, an 18 kg carry on case, AND a handbag the size of Wales around 3 airports was ridiculous.

It isn't exactly that I don't know how or what to pack.. but because of my 'condition'  my packing has been somewhat.. eclectic. I like to have a variety of outfits.. a couple of casual things.. flat shoes. maybe something a little more formal in case of unexpected nights out: nightwear or a robe in case of late-night/early morning fire alarms (having been around on a couple of occasions in my distant past where that happened, and caught one or two nude sleepers unawares... I really don't fancy traipsing out to a windy carpark at 3 am wrapped only in a bath towel... or a sheet) a handful of teeshirts: sweater.. underwear...  so I set out with the best of intentions. What tends to happen is that I open the case a few days before I'm due to leave, and find that somehow, although I have stuck to my formula, I have managed to cram in at least 3 different versions of each outfit: so that it looks like I packed for 3 people: one of whom is a 3 year old with no eye for colour...  

Fortunately, I have my own version of OCD: so before every trip I take, even just an overnight visit, I will pack and re-pack a bag perhaps half a dozen times.. laying out everything I had originally packed, and switching items around: removing what I feel I don't need, or am just taking 'in case'...  the last re-pack usually being the day/night before the trip, to catch any last-minute changes, or bits that have managed to sneak in when I wasn't paying attention.  

I was challenged, (actually, it was more like requested)  for the last trip, to see whether I couldn't reduce everything down to just one case, and maybe a handbag. I have to admit that although that did leave me a little anxious, I was curious to see whether it might actually be possible.....   it was. Kind of.  it took a lot of willpower, and a little brutal honesty: but when I headed off for the station this time, it was with a single, small suitcase: its matching overnight/carry on bag (about the size of a large handbag) and a laptop bag. I was, I'm a little embarrassed to say, oddly proud of myself:  especially as when my bag was weighed at the airport, it came in at less than 13 kg.. it felt odd, in the best way, to be heading for the security checks carrying only one bag: but the speed that I was through the checks, and off to my gate was a real eye opener, and I had an unaccustomed pang of achievement when I was able to slide both of my carry on items under the seat in front of me on the plane (no more struggling to drag an unwieldy bag into and out of the overhead locker when I wanted to find another book: or a sweater... it was a real epiphany.)  So.. this time, I want to see just how small a case I can get away with. One small carry on size bag? maybe. whatever I do pack, though I know I'm NOT going to be taking the enormous, clumsy behemoths that I have previously had to manhandle through an exhausting assault course of trains, stairs, lifts, belts, cabs and uneven pavements.  I have already given one away:  another is now filled with the flotsam that I regularly sort to be given away to charity shops, and tucked away in my storage area: and the third is currently acting as an additional wardrobe for all those lightweight, bright outfits that only ever emerge when its warm enough NOT to turn my fingers blue..  I finally found, after all these years, that I LIKE travelling light:  it has its own kind of exhilaration: its own aspect of risk..   and, well... no-one ever died from a shortage of teeshirts.. and they sell deodorant and sunscreen in OTHER countries, right?

The Thing Is......

Today. I have (after sleeping: which believe me has become no easy task lately!) been comparing travel insurance quotes. (Yes, I know... I am just THAT exciting...)   I can't believe how quickly the last year has passed, and how soon the expiry date has come around.  So much has happened, both during, and in between my trips: and my life has changed so drastically over the past couple of years, that I barely recognise it.. or me.

For some people, this kind of blogging seems pointless and self-indulgent. I can understand their point of view: there are those who think that a blog should maybe be educational: informative.  I tend to just empty my head onto the page, however inane, and perhaps edit it later if it makes no sense, or is too off the wall even for ME to read...Doing this, for me, is a way to create order inside: to perhaps calm my thoughts to the point where I can make sense of them; sometimes, I even find that I discover things about myself, or my ideas, that I didn't know existed...  I try to read every entry as though someone else wrote it: hoping that if it appeals to me, it might appeal to others. I kind of made a promise that I would:   1)  make an effort to write more, generally (I've been struggling, I can't deny it)  and 2) once I did start writing, that I would also make an effort to publicise it a little. hence settling this up as a blog, rather than making an online journal that only I can read.  Right now, I seem to be stuck on a travel theme: not necessarily a bad thing: but it is unusual for me to write about anything in quite such personal detail: and I very rarely make my inner ramblings so public (for the sake of others as much as my own)  But...  a promise is a promise.


 I journal and blog to clarify my thoughts: to create some order in my often chaotic head...  I do have a couple of private blogs, which I visit infrequently, mainly because as I cycle through my weirdness, I forget that I created them, and am generally reminded by emails telling me they are languishing in the ether.  I also have a physical journal, which I usually try to use every day (not always possible, but I try)
The physical act of writing:  of selecting just the right pen:  just the right page. |The movement of my hand over that page: the sight of the words flowing (or even being slowly squeezed) from the nib of the pen, is calming to me. It causes me to slow, in order to allow the transfer of what is in my head, through my hand, to the page with some degree of coherence. That in turn can often ease the rush of ideas, thoughts, feelings, and allow me to sort them, catalogue them, Recognise each for what it is, examine it, and set it down, happier that I can at least find it again and revisit what it has meant for me.

I realised that I instinctively apply that same principal to other areas of my life. When I am at my most anxious, distressed, or overwhelmed, I find myself looking for chores around the flat. I dust: tidy, fold and re-fold sheets and towels. Re-order books on shelves. go through the cabinets in my kitchen and move things around: and all the while my hands are busy doing that, I am settling my mind.

When I know that I am going to be making a trip, I have ways of doing the same thing,  The moment I decide on a date to travel, I am instantly anxious: not about the journey itself, but about what might go wrong before  or during. I make endless lists - 'to-do' lists so detailed that they are all but moment to moment. lists of what to pack, and which bag to pack it in.  I pack and repack.. amend lists, check and double check flight details and bookings...  I assuage that anxiety by overplanning: even creating an itinerary that I would be highly unlikely to be able to keep to, but which offers a sense of security that helps to maintain a degree of calm. I'm ok.. I have a plan.
I was also given a kind of 'emergency pack' by my very understanding boyfriend.. it contains a list of contact names and numbers so that should there be a problem while I'm travelling,  I (or anyone else on my behalf) can contact him. it has a typed statement explaining my condition just in case it should be triggered:  and his address, because if my physical problem starts affecting my memory, I might well struggle to remember where to ask the cab driver to take me.  All of these things help:  as does making sure that I have some familiar things with me:  I always carry phone, notebook, pen. usually a couple of books to read (although I read so fast and intently I often finish these mid-journey)
Part of my hidden condition that I have great difficulty approaching strangers to ask for help or information...  so when I am going away, I also try to make sure that I not only know which gate I need to find: but have a rough idea of the layout of the airport I'm travelling from/to so that I can navigate a little more easily.  part of me wishes that it was possible to maybe just link in to a wireless information system, like an internal GPS service within an airport, that would guide me to where I needed to be: but I doubt there is any such service developed yet... (although.. if there is anyone reading this, I may well just have given away a damned fine idea.....)