One of THOSE days...

There are times when, despite my reluctance, and a growing inability to manage it, I have to not only leave my home, but travel into town, or to run errands, or go shopping. Generally I do everything that I have to online to save me the stress and upset: but that isn’t always possible:  besides, it is all too easy for me to become a reclusive hermit, and while it causes all kinds of problems for me, physically and mentally. sometimes I have to force myself to do things that I am not only reluctant, but afraid to do, simply because I am equally terrified of disappearing into the miasma of fear, pain and confusion that I constantly battle in my own head.

The problem is that while I  know what I’m dealing with, and why I behave the way I do when I’m out, other people don’t: and there is no way for me to explain even to the few people who DO know me, let alone some random stranger. How would I ever explain that I am mostly so completely overwhelmed by the sheer numbers of people that I can’t deal with it, so I wear headphones to drown out their noise: dark glasses to hide the fact that I am desperately trying to avoid accidentally making eye contact, and to reduce the sensory overload caused by too many sounds/colours/movements that often triggers me and leaves me shaky and frozen because I can’t process it all, let alone deal with it. I can’t actually shut out or mute the constant smells and touches, but if the other senses aren’t being so strongly assaulted it is easier for me at least to focus my energy on coping with those. . That I wear a bluetooth headset so that I can pretend to be talking on my phone (unless I actually AM talking on my phone, and being eased out of a panic/breakdown by my very understanding and patient b/f) so that I don’t have to interact with other people even superficially.

There are so many other things that I wish other people could see from inside me. The brain fog: the horror of realising that I have been standing in a shop/street/room for ten minutes. wearing that now familiar confused/distressed expression because I can’t remember what I was supposed to be doing. Not remembering how to open a jar, or a box: even the frustration because my brain can’t process/remember how to use an ATM for the fifth time in a week, and I’m all too aware of the mutterings (and outright hostile expressions) of impatience from the rapidly growing queue behind me. The constant background of pain that I have to assess every day, and plan my life around. Having to choose whether to eat, or bathe that day because I won’t have the energy for both: having to understand that if I DO push  myself and manage both that day, I will be too exhausted and painful to function for the next 2 days at least. The knowledge that I have to plan every activity days, weeks, even months ahead, partly because of how the pain and fatigue will impact the days and weeks after it, but also because if I don’t have that time buffer to plan and get used to the idea of doing something, I will be too terrified to do it. it With me, it isn’t usually a case of talking myself out of doing things if I know about them in advance… its just the opposite. Time, the opportunity to plan, re-plan, consider, talk about, think about, panic, calm down, cry, accept that I am afraid, work through that, list all of the pros and cons: work out how much energy it’s likely to take, and how badly it will affect me for days/weeks afterward, can mean that I will, eventually be able to do it, however reluctantly.  I wish other people knew that I can’t read their facial expressions.. that the reason I might appear to make a healthy amount of eye contact is that I am afraid not to look at them in case I miss some visual clue about their mood, and find out too late that they are angry/aggressive/bored and be unable to get away before they become verbally or physically abusive. I wish they could see that I am not only uncomfortable but actively anxious and distressed around large groups of people. especially if I can’t easily get away: but that I also try very hard not to be that way. I wish they could see that I am not always being antisocial or self conscious, or ‘rude’… sometimes I am simply exhausted and in pain, and unable to deal with whatever is going on outside of me, because all of the energy I have left is being spent on keeping myself going until I can take my meds and lie down. It isn’t that I’m not listening to you: its that I am so tired that I can’t retain any of what you are telling me. Its that the fogginess in my head is blanketing everything, and I can’t focus. Its that the pain is simply taking over everything, and getting through it is all that I can think about right now. It isn’t that I’m being intentionally selfish.. its that I’m trying to practice the self-care I’m finally beginning to understand that I need so that I can function. And it that this isn’t an ‘excuse’. a way of avoiding work, or laziness. If there was any way for me to stop all of this, and get back to the me that I used to be, before all of this took over my life, I would do it.  But now, THIS is my normal: and I have to come to terms with that…  I just wish that other people could accept that too

Space travelling

Recently I was returning to the flat from a short trip: tired, in considerable pain, and not feeling particularly well, or well disposed to the world in general:  I just wanted to be left alone to deal with my intense discomfort, and get to where I was headed do that I could take some pain medication (which I loathe) and sleep. It was a very busy journey, and I found myself seated beside someone who obviously subscribed to the 'space invader' school of travel. A young man who proceeded to flop into the seat, legs akimbo, and arms spread, to the point where I was crammed awkwardly into the very corner of what was left of my own seat, pinned there by his knee and elbow, for the entire remainder of my journey. by the time I DID get to my destination, I was in agony: so stiff I could barely place one foot in front of the other, and unable to close my fingers around the handle of my stick, let alone cope with the pain of using it. 

I'm aware that this sounds like the bad-tempered ranting of a middle aged woman unhappy with the 'youth of today'. It really isn't, While the ignorance and lack of consideration of that young man was breathtaking. It actually started a line of thought that had me considering quite a few things, including the way I not only travel, but see my world.

I am English. Not just British, but English specifically, and I am very aware that The English as a group are seen in a particular way by people in many parts of the world. Very repressed:  reserved. prim... so we aren't usually seen as sprawlers: more the 'knees together, back straight' type, carefully pulling in elbows and bags and any protruding knees, in order to both avoid invading anyone else's personal space, and to protect and define our own. We aren't really keen on sharing small spaces with others - how silent are we in the confines of a lift, for instance? how carefully do we avoid eye-contact?  But when we are forced to do so, we also have a tendency to mark out tiny territories for ourselves, with carefully drawn and marked borders. Heaven help anyone who takes up more than half the seat we were forced to share with them on the full bus, or stands too close in the slow-moving queue. I know that I have particular issues with having my overly large personal space impinged upon:  it makes me anxious, uncomfortable. I inevitably have to move, even if the only leeway I have is an inch or so, and I end up squashed awkwardly against a window or arm-rest, I have to do my best to get away from the invader, Often if I can't, I will actually get up and leave the bus/queue/room: but in situations where that is not possible, I either spend the entire time I am subject to it sitting or standing rigidly at attention, terrified to relax, or trying my best to escape into my head so that I don't have to deal with the physical indignity. My responses are, I know, fairly extreme, and a result of PTSD caused by years of trauma. Still, it is interesting to watch people from some other countries and cultures being so much more uninhibited and relaxed about making casual knee to knee contact, or bumping shoulders with strangers. Part of me thinks that if you grow up in a vast country with huge cities full of large spaces, you don't feel the need to make yourself small: you sprawl like your surroundings do.. whereas in a tiny country with a large population, where space is limited, and everything from houses to cars are so much smaller, there is maybe an inbuilt need, if not an obligation, to take up less space: to maintain your privacy, and to make sure you offer as much of that as you can to the person next to you, who is just as uncomfortable as you are at the enforced intimacy that such crowding can cause. I'm also aware that as a child, I also felt the need to be small.. tiny.. because that made me virtually invisible to some people, and kept me safe. I have come to realise that its a talent I have carried with me into adulthood.. that I can be sitting alone in a room, and yet if someone comes to look for me, they won't see or find me, because I have learned to blend so completely into my surroundings.

The Man tells me often, that when I sleep, I curl into a ball so tight that he can see the strain in my joints.. that my hands ball into fists, my jaw clenches, and I breathe so shallowly and silently that he has to check that I'm still alive.  I hide, even when sleeping so deeply that I don't wake when he tries to ease me into a less painful position.  Now, I'm realising that I do the same when I travel. I sleep atop the covers of hotel beds, and move so little (if at all) that the bed does not appear slept in. I make myself small enough on buses and trains that people often don't notice that I'm there. And while I relish being left alone and being unobtrusive it also makes me a little sad sometimes, that I can't relax even when I'm away from the things that  most scare me

Honesty.. Really the best Policy?

For the past...(thinks)  2 months, I have been planning and organising my next trip. I have searched and re-searched websites for prices, dates, hotels, rail fares. I made list after list of things I needed to put into my case: then spent weeks packing, unpacking, repacking and pacing anxiously back and forth in front of my case, stressed to the point of tears because while I don't want to overpack, I also can't leave behind something that I may need. Today, I removed several items, replaced them with others, and sat on the end of my bed shaking because I was so unsure. 

I don't make decisions. At least, I don't make them easily, or willingly. And to explain that, I think I am finally going to have to explain the condition that I have been so reluctant to name. It's strange... I can't tell whether I'm ashamed, embarrassed or just self-protective, but...

I have Dissociative Identity Disorder. The condition formally known as.. Multiple Personality. Usually portrayed in movies as the illness that psychopaths claim to have in order to justify horrific crimes, and escape punishment for them.

The reality is very different. I have never committed any kind of crime, violent or otherwise. I don't think I've ever used it as an excuse for anything: mainly because I haven't shared my experience of it with people, except in a very few cases. And making decisions.. If you've ever belonged to any kind of committee you'll understand. Taking a vote every time anything needs to be done is exhausting and time consuming. Grocery shopping can be a nightmare... Some days, getting dressed in a morning is a major battle.  packing a suitcase, especially a small one, is hellish. I make a list; pare it down to the barest minimum. I pack.   A few days later, I go back.. open the case. Remove the 20 additional items someone has decided are essential and can't be left at home. Stuffed toys. Clothing in 6 different styles. Books...sometimes a dozen books from all genres. Notebooks, pens, toys: jewellery. Last week, there were 5 pairs of shoes in there. I wanted 2. I'm going to be travelling with a single, hand-luggage sized case, and a small backpack which will contain travel documents: print-offs of rail travel information, bus timetables, and hotel booking paperwork. I have a small plastic folder containing pens, notebook and a small sketchbook in there too: and my phone,purse, cards camera and one pair of clean underwear will also be travelling in there. I don't want to overfill it: I don't want to be carrying around things that I will not need. But already I am having to sweep through that bag too, because in the periods that I am switchy, the blanks and gaps in my memory and awareness, someone keeps sneaking more into there.  I won't need the backscratcher, the 3 small stuffed toys, the hand-held console game (and games for it) the three additional books, training shoes and hairbrushes. I don't leave for another week and a half, but I know I'm going to be absolutely exhausted and stressed to the point of tears by the time I leave. And that is before taking into account trying to stay present and aware for the whole journey (never happens. I always end up switching at least half a dozen times trying to cope) and finding ways to disguise the more bizarre behavioural changes (think fat middle aged woman wide-eyed and fascinated by the vending machines in the hotel lobby, bouncing like a 3 year old because she wants to get icecream from the magic shop....)

Add into this mix the fatigue, memory fog and pain of fibromyalgia, and the crippling anxiety that means talking to strangers into an ordeal like no other, plus the creeping certainty that I will have missed something that I really needed to have with me.. that one of the 'others' will have taken out my travel documents to look at them, or make space for a colouring book, or just because. and I won't be able to go anywhere..

I travel because I love it. What I don't love is the infirmity of my ageing body, and the tendency of my fractured mind to sabotage every single thing I do...

Marking Time. And losing it

One of the hardest things for me, is linear memory.  I don't mean to suggest that I have absolutely NO memory of my past: it's more that the timeline of my life is confusing to me.Logically,  I know that things happened. I know that they happened in a particular order. However, my memory is more jumbled and random.  Sometimes I will be talking with someone; maybe exchanging stories, and they will tell me about something that they did when they were four. Or eight Or forty:  and I will try to share a story of my own. I will say maybe "when I was three years old, I ..."  and I will remember that I really was three years old when that thing happened. But then there will be a huge gap, Or I will try to explain how I developed an ability, or an idea over a period of time, only to realise that I can only see events unfolding in random flashes that jump backwards and forwards through the years until the process makes no sense to me.

This, in part, is what the condition that I haven't yet named, does to me. It confuses time so that events that happened decades ago will suddenly be immediate and affecting, where something that happened just an hour ago will seem to be so far away that it barely registers a response. It leaves huge, blank gaps that swallow weeks, months... occasionally even years of my life: chasms that I cannot cross; time I can never recover.

Again. I can see that this is where someone would ask what the hell this has to do with travelling. I guess for most,, the response would be "nothing".  But for me, the effect can be devastating... so I develop coping tools. I have rituals, routines. to help me remember: and to stop me from falling into one of those chasms: and the most important one of those for me, is that I write everything down. I make endless lists. I write down not only directions, but the routes and numbers of public transport. the numbers of, and (where possible) addresses for taxi companies.  bay numbers for bus stations: platform numbers for trains. I write the names of places I should see as I travel. Road names and intersections, Junction numbers. I write the names of streets I need to be close to.  I carry not only tickets, but enough cash to replace them should I lose them: plus an amount for cab fare just in case I can't cope with a bus. I label everything. I carry my folded stick tucked into my hand or into a pocket, it I have one large enough, but I have to write down where I have put it in case I become anxious or distressed, and my overtaxed concentration collapses.

Once, I stayed in a hotel where they provided not just internet access in the room, but a PC: and the means not only to work, but to watch films or TV on the monitor. I spent two hours researching routes from that hotel back to the railway station, along with timings, in case I blanked out and didn't have the time, or capacity to call a cab. and I listed every item I had carried with me so  that I could check each off as I replaced it in my bag.

I love travelling.. I love the feeling I get from it, But I  never once said, or expected, that it would be stressless or without complications for me.

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?