It isn't always summer

There are clouds today. Not just the big, white fluffy ones that herald one of those 'hide and seek with the sun' days:  these are serious, heavy grey thunderclouds, lowering with intent. I want to watch them... I want to see what they are actually bringing:  but I don't have either the physical or mental capability to do that.

It has been a while sine I added to this blog. It has also been a while since I wrote in my journal: because somewhere in the mess of confusion and upset and terror in my head, I have lost the ability to express myself coherently...

This is one of the things that most worries me. I am writing this in stages. between such intense periods of cognitive meltdown that I am actually afraid that I may be in the early stages of dementia. Oh - I have my 'Granny's Attic' memory function:  my store of endlessly useless random facts: but ask me what I did yesterday?  or my phone number? Doctor's name?  MY name?  I can go for weeks.. months, like this. Struggling to remember the important things - did I pay the bills that aren't automatically paid via my bank?  Did I remember to empty the washing machine, or is there a load of damp laundry from 3 days ago quietly festering in there?  Did I remember to take the food I actually managed to cook in my oven , out of said oven, and put the leftovers in the fridge or freezer?  or will I, as has happened more times than I want to recall, open the door to put something in to roast, and be met with the overpowering stench of rotten food, and a dish full of unpleasantness to have to deal with?

People look at me and assume, They assume that I am competent. That I know what I am doing. That I have a degree of intelligence. They have no idea how much of a struggle it is every day to maintain that semblance of ' normality',  That there are days that pass me by unremembered.. unnoticed. That I sometimes wake and have to check the television news not just for the day of the week, but for the month: the year. That I wake sometimes terrified that I have imagined huge chunks of my life and that THIS will be the day when I find out that so much of what I believe about my life, and about what I do and have done, is fantasy,

Travelling... travelling does the same to me as losing time. I don't know. How do I explain this without making myself sound ridiculously foolish as well as insane?

Years ago, I worked in my home town, for one of the largest public services. Then I found myself, due to a complicated and humiliating set of circumstances, having to move to live in another town maybe 50 or more miles away. I retained my job for a long time after the move, travelling by train, mostly: a journey that took usually 80 minutes or so.
   The difficulty was that I worked permanent night shifts, and because of the timing of transport, I would arrive back at my house, do the tasks I needed to in order to keep the place running as it should, fall into a restless 4 hour sleep, then crawl out of bed, hurting and exhausted to begin the journey back to work. Some days, I managed better than others: but I would often be sitting in my seat on the train as it rattled across the country, and be struck by the strangest and most unnerving feeling, of confusion and disorientation, utterly unsure, sometimes for the remainder of the journey, which way I was actually travelling.


     Perhaps that seems irrelevant here:  but I still have that sense of confusion and anxiety:  moments when I have no idea where I am: where I am going, Even who I am is unclear  Perhaps it is a little unusual to feel so.. disconnected?  to both my surroundings and my journey: To others it probably seems foolish, or mad:  but it is both familiar and 'normal' for me:  and while I do find it distressing and struggle to manage both the episodes and their aftermath, the most difficult thing about it for me is preventing others from seeing it in me.

Tilting At Windmills.. or Facing My Demons?

This was always designed to be a place where I wrote about travelling..about the places I have been to:  but reading back, I can see that it has, almost from the very beginning, also been about not just the process of getting physically from one place to another: but also about the way I approach it, and why: and where my difficulties come from.  It was never meant to be cathartic, (and frankly never has been)  but without intending to, I seem to have also been using this as a means of both exploring and explaining some of my own issues, and looking at some of the myriad ways they can both enhance and detract from the experiences that I have. And so far, I have shied away from any explanation of my 'other' condition, although I have made sideways references to the effects that it can have on my trips. My reasoning for that has always been that it is too difficult to try to explain the what and the where from, of that condition.

The reality is that wherever it comes from, and however difficult/embarrassing explaining it may be, the impact of it is immense. I suppose that, because I have lived with it for so long, I often don't respond to its ravages with the same distress as people on the outside who witness it. I'm not minimising either the condition or the resulting chaos it can cause in my daily life:  I'm simply stating that I am so used to what can happen that I have an automatic damage control response to it:  and have become extremely adept at hiding it from others.

Again:  what does that have to do with my travels?  Well... very simply put:  I may very well remember setting out on a journey... but whether I have so clear a memory of the travel itself is debatable. I can't even begin to explain the confusion and distress that I have felt in the past at finding myself in a new and unfamiliar place, with no memory of how I got there. and no idea how to get either home, or to my originally intended destination:  or even whether I have the means with me to do so. Over the years, I have developed ways of coping with, if not controlling it: and one of those is my seemingly obsessive over-planning of any travel, whether it be a bus journey into town for shopping, a medical appointment, or a longer trip. I start planning days, if not weeks in advance. I write everything down: not just bus or train times, but fares: where I need to get on or off the bus/train. how long a wait there is before the next one:  What to take, and what to carry it in. The telephone numbers of the bus/train/airline company. The telephone numbers of anyone I might be going to see, as well as email addresses. Booking references, MY telephone number.  Anything and everything I might need:  or that someone else trying to help me might need to know,  I carry a card detailing my mental health condition, and how it might manifest, the information in two formats: one side of the card explaining in laymans's terms: the other for medical professionals. I carry only a small amount of cash because I am so afraid that I will lose it, or it will be stolen while I am oblivious  because of my illness. I carry the various medications that I do/might need, in packaging with the prescription details on it in case I need to get more: or need help taking them. I treat myself, in fact, either like a child, or an adult with learning disabilities, because my condition can cause me to behave and feel that way: and to be seen that way by others.  I am not dangerous or threatening to either myself or others: but I have seem people shy away and avoid the crazylady, and it hurts and panics me to see that...

Do I do all of this because of my condition?  Perhaps.  I know that I do thousands of things despite it. I also know that other people feel far more comfortable helping the fat old lady with the physical disability, than the fat old crazy lady: so I hide:   I show my stick, and my infirmity of form:  but bury the chaos in my head so as to not make regular folks uncomfortable..

Didn't I just say that?

I just read an article from a link on facebook that had me thinking..

I don't come from any kind of well-to-do background.  The parents were both very much working class, but with definite aspirations, and since neither of them had really achieved the things they wanted for themselves, there was a kind of... determination that none of their children would be permitted to disadvantage themselves...  so, education was paramount:  it was drummed into us (quite literally at times) that we had to work hard at school:  that we were all expected to do well in our exams, and head out into the best possible careers:  for me, (after speaking at a parents evening with the amazing teacher in whose French and Spanish classes I was flourishing, due to her patience, humour, and willingness to work with me) the 'hope' thinly disguised as an instruction, was that I would continue into higher education. study more languages, and become an interpreter at the United Nations...   their bitter disappointment in me when I left school with very mediocre results, and flatly refused to follow the plan was palpable.. and regularly voiced.

But their social ambitions left me with a legacy that has been both a burden and a bonus over the years.  I grew up in the East Midlands, in the city where both of the parents had been  born. My maternal grandparents were both, I believe, from the same city.. my paternal grandparents both from Yorkshire, and had the accent that goes with it.. but were very well-spoken and pleasant-voiced: a trait shared by their children.

To the mother, this was, it seemed, the key to social success, and as soon as we began to speak, we were groomed to do so 'properly'.  Local slang terms were banned from our vocabularies:  the vagaries of local dialect a cardinal sin. Every word had to be carefully enunciated: and the coarseness of the regional accent smoothed out of our speech... even now, I am told that it is very difficult for people to get a fix on where I might be from:  and many have told me that they actually thought I was from the Home Counties.. or possibly the more salubrious parts of London.   And while as an adult this might be considered a good thing:  growing up on a council estate in one of the roughest parts of town, and attending an inner-city comprehensive school, it was pretty much akin to painting a target on our foreheads, tying our hands behind our backs, and shoving us through the door with 'kick me' signs hanging around our necks.  I lost count pretty early on, of the beatings I took for 'talking posh' or 'thinking yer better than us'.  at 4 and 5 years old, the hostility was met with absolute incomprehension...

What does any of this have to do with my journeys?

I have found that my accent, or rather my lack of a recognisable, strong regional accent is often commented on. When I travel, whether it is locally or to places further afield, I have regularly found that my speech, or my voice pique interest. I am asked where I am from: and find my reply met with surprise, and occasionally scepticism.   It has left me with some sense of.... isolation, to a degree.  A lack of anchor and roots: a feeling that while I may come from a certain place, I never belonged there: something that is surprisingly difficult for me to deal with.

I have no particular attachment to my birthplace:  it holds many more bad memories than good: and yet.. not to have that sense of belonging: of place, leaves me confused and shiftless: has me questioning myself and my identity: and wondering where, if not the place I was born, can I ever feel at home?

Where do I go From Here?

So many things to consider when writing here. Not so much what might interest people - I doubt that this is read by anyone but me)  but committing my thoughts to the internet is a dangerous thing. Unsafe enough to put them on paper sometimes, because others might, at some point, come across them. But here, they can be available to anyone idly scrolling; and although they will not know me, there is always the understanding that I could (and probably would) be judged for the things that I say.  Still:  I have little outlet for my inanities, and this does give me a chance to empty my head of things once in a while.

Another trip. This time things are a little different, because I am a little different lately. I am... tired. The fibro flare ups have been more frequent and severe, and there is nothing I can do to ease some of the more worrying symptoms but sleep, rest, and hope they pass.  The journey here was.. perhaps a little smoother this time, since I brought only hand luggage: not having to check;  reclaim. drag around, and recheck a large, unwieldy suitcase made a huge difference: as did taking the time to eat at the airport, and making the most of the layover between flights to rest physically.  I was a little sleep-deprived since I flew out of Manchester again, and every time I do that I end up arriving at the airport late in the evening, chatting with Him online, and not actually sleeping before I fly:and I find it nearly impossible to sleep on the plane unless I am so exhausted I have no choice.

But this time, apart from the fibro, and the other, permanent condition that always worries both me and Him when I travel, I have been suffering from a severe bout of clinical depression:  severe enough to have me tearful and lost for long periods.  Travelling in this state is awful, because along with the terrible low feeling, and the additional tiredness and lack of energy and enthusiasm, my cognitive skills have been even MORE badly affected. Combined with the effects of the fibro, I have struggled not only to remember details of the journey, but to understand instructions: follow directions, and, more disturbingly. at times, I have not been able to comprehend what was being said to me, because my poor, exhausted, muddy brain cannot focus.  In many situations that would be awkward and embarrassing (and regularly is)  but in the middle of the security checks in a busy airport, it became very distressing and frustrating for me, especially since, despite my honed skills at masking these difficulties, it was obvious that my confusion had been noticed.

What upsets  me even more is that I can't take control of this. I can't step back and look for an incident that might have caused my depression, because there wasn't one:  this is simply due to a chemical imbalance in my already addled brain, and until that balance is restored, I will continue to be tearful and afraid, and pessimistic.  I hate this feeling: have hated it since I first suffered it as a child:  I learned to manage it when I could, and hide it in order to protect myself. It grieves me that I have never been able to release myself from it: and that now it can affect my relationship in ways that make me hurt.

For now, I am trying hard to make preparations for the journey back. For the two long flights: for the increasing stretch of time and distance between me and the one I want so badly to be with.  I am trying to find ways to make that physical journey as smooth, pain-free, and restful as I can, knowing that managing to do that will make it less difficult for me to cope with the emotional upheaval...  A little sleep during the 14 hour layover between these flights will make me far less likely to be edgy and miserable. A chance to eat a proper meal - not fast food, or snack food, but a proper meal where I can sit at a table, use cutlery. Read. That can make me feel more grounded and connected to myself. And reminding myself at the point that the plane touches down in Manchester, that I am going to go back again:  that I will see Him again soon, can help me not to feel so alone and isolated. I know that I will get a call: or a message: or an email filled with love and care, and reassurance, because I always do. Its just that right now I am in a very dark place,  and I have no idea how to climb out. Sometimes, He is a bright light in that place, and reminds me that there is always more sun: always more sweetness.. and that somewhere there is a ladder long enough for me to use.

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...