People
who have physical illnesses often know exactly what is wrong with them, what is
causing their illness, and what they can do to reduce or cure the effects of
that illness – as do their friends and family.
(I’m well aware that not everyone does).
But in a situation like mine, I’m on a spectrum of things which might
affect me more or less than other things, and so people can’t just learn about
Autism and Asperger’s, but about how the symptoms affect me as in
individual. The hardest thing is when
people think they know how I should be, think they know about me, and put the
theory in place, and it doesn’t match. I’ve
got a situation at the moment with someone who I’ve known for many years who
has put themselves in place to give me advice, and it’s just horrible every
time I have to be in the same room as that person, which is roughly once per
week. Even worse when I’m trying to
focus on what I’m there for, and trying to avoid any conversations related to
work as I’m not at work at that point.
This
place is, again, church. I’ve reached
that key point where I’m not new again, and people are starting to place
me. I’ve lost the best friend to sit
next to as he moved on, and indeed he protected me from a lot of these
conversations and discussions. Now I’m
on my own, avoiding these is somewhat more difficult. One morning, I was inflicted into six
conversations about work. After spending most of Saturday trying to relax and
get away from the week, it’s all thrust back on me very quickly. Some of the things with church are still
there from my previous experiences, and so often my head is full of stuff that
I keep trying to get rid of, that keeps coming back. It kills my focus, my concentration, and I’ve
wanted to get up and run away a number of times. I know if I do that, then there’s no way
back.
A
few weeks ago, I was asked about re-joining the PA rota, which for anyone who
hasn’t read the previous posts, I was asked to stand down from several years
ago, by the same people who are in charge to this day. Although I was asked by someone who didn’t
know the circumstances, it just put me in a corner. After the previous conversation mentioned
above with someone who was trying to tell me what I should do with myself, I
was left trying to explain the situation without getting angry or bursting into
tears. Whether I want to do PA or not is
irrelevant – 3 churches have rejected me, mostly because the people do not
understand that I worshipped through what I did. That channel was cut off each time because
people didn’t want to listen to me, and didn’t give me the chance to be
different. They just assumed I am the
same as everyone else.
I’m
not sure what to do about the situation.
I’m worried that I’ll end up with no church again – that wasn’t a nice
place after what happened here last time.
I don’t know if I’ve reached the end where I am, and I’ve got nothing
standing out at me as an alternative at the moment. I just pray.
Saturday
has become my only chance to get away.
The week is much the same. Work
is still the same challenges, and home isn’t really much of an escape. I’ve become very alone in the evenings since
leaving simsig and the model railway club.
I can occupy myself sometimes, but sometimes there’s so much in my head
that I end up doing nothing much, and the situation just carries on. If I do get focussed on something, then I
find that the thoughts and emotions return when I go to bed and try to switch
off. If I manage to go out on a Saturday,
it’s just like a temporary way out. It’s
like I just hide behind it, and it comes back when it’s time to move onto the
next thing, or it’s forced back on me by others not happy with something I have
or haven’t done. Several times I come
home from being out, relaxed and reset, only to have someone else’s problems
inflicted on me. It’s just like the rest
of the week, and work, so it’s everything becoming so current again and I just
burst into tears when the torrent hits.
Crying and trying to get things out in the same place as people trying
to take their issues out on you whilst not making it too obvious because it
only gets worse is impossible. I’ve
never got all the horrible stuff out of my head, because I don’t have the space
when I need it. Mostly, that’s at work.
The
situation is no different to the last time I wrote about it. Trying to somehow cope by dodging the blame
for anything and everything. The past
few weeks have seen the return of the politics in the one bit of my job I do
like – buying parts. It’s always been a
political world. As a small garage, I
can only buy what my suppliers (motor factors) stock. When I go to a trade show, it allows me to
talk to the companies who manufacture the parts. Some companies are good at being interested
in talking to us who buy and fit the parts – others are absolutely
hopeless! I’m not interested in
corporate waffle. I’m interested in the
truth. Sadly, motor factors seem to be
as bad as politicians about giving us as a small garage the real facts. They also don’t seem to like being questioned
about things. I’ll give an example of
what I have to put up with. A few weeks
ago, a large motor factor had a price rise of 11.5% on one brand of
products. This was larger than we would
normally see, and so I questioned it, thinking terms had been dropped. The reply given by one of their directors was
that the manufacturer had increased cost prices to them be an average of
1%. Now, anyone with basic maths skills
will notice that this doesn’t add up.
So, I questioned it again, giving several examples to prove my facts,
and got no reply. That was until I
walked into their self-organised trade show two weeks later, and was nearly
immediately pulled aside after walking through the door, and told “trust you to
notice the price rise. We’ve had to pass
on increases in our costs – that’s how it is”.
Angry really doesn’t cover it – as a small person in a small garage in a
small world dealing with big companies in a big world – we have to put up with
what to me are blatant lies and attempts to fob us off.
It’s
not the first time, and it won’t be the last.
When you try to talk to manufacturers about why you don’t buy their
products, most are not interested, as the majority are happy. I’ve had suppliers refuse to deal with me in
the past because I always check prices, and won’t buy parts which are, in some
cases, deliberately overpriced. I am just
a small person in a small company, and so I don’t matter. I’ve been told to apply for jobs in these
companies – in recent times, they don’t reply to my applications. A few years ago, I later found out that the
interview I’d had was listened in on by two senior managers in the adjacent
office. This summer I applied for 3 definite
jobs and made several speculative applications at motor factors and for other
jobs. Of the motor factors, one manager
told me he would get back to me, and never did.
Another told me he couldn’t offer me a job because I did not tick the
boxes. He suggested I was more suited to
a job at head office and would pass my details on – again I heard nothing, and
it was suggested to me that I was being fobbed off.
I
used to dream of being able to prove what I know, and dream about being
listened to and taken seriously.
Recently, it’s just another series of nightmares about not being able to
cope with what I have to deal with daily, and seeing me losing it at the people
who make me feel so small, and refuse to tell me the truth.
I’m
lucky to have some good working relationships with local branches of motor
factors, although it’s very difficult when their head offices aren’t always
supportive of the working relationships.
The amount of work both sides put in to get around some of the brick
walls imposed by high up is huge, hard work, and when things don’t quite work,
I don’t always do very well at dealing with it.
Add this to the string of other issues I’ve talked about in previous
posts, and some days I just don’t cope.
I don’t know what I can told to make things better – I feel like it’s
the big companies who are holding me back, and I feel like I am waiting for the
day to be able to prove myself, and be listened to.
Back
to now, and I somehow have to release this from my system, along with all the
other things. The problem is things keep
building up and building up. I spend
most of my evenings in my bedroom with a computer, internet connection and a TV
– although mostly the former due to the lack of programs worth watching on
TV. Sundays I’ve already talked about,
and Saturdays are my only chance to get away.
Even that doesn’t always happen.
People have a habit of giving me things I should be doing, and if not
that, telling me I should be doing other things. All I want to do is get away from anything to
do with work, and usually that means from home and my parents, as it’s too
close to work a lot of the time. The
hardest thing though, is being alone so much of the time. The evenings I am mostly to myself. I sometimes manage to engage in some kind of
text based conversation, and occasionally a meaningful one which helps. The problem is anything else just hides the
problems away, until they come back out.
Sometimes if I’m on my own, or I have to do something which I don’t find
easy, then it’s not an escape at all.
Sometimes I bump into someone I don’t want to bump into, or a
conversation changes to work, and things go quickly back to square one. The more that’s gone on, and the more that’s
stored in me, the more delicate I am, and the harder it is to get away and
clear out. Even when I do get away, I’m
soon back dealing with something.
The
problem is not just my head; it’s giving me other issues. About 3 months ago, I had a cold. Nothing serious, except I still have some
symptoms now. I feel like my head is
pressurised and blocked up, I have dry eyes a lot, and sometimes indigestion type
symptoms. It seems to be a lot worse
when I get wound up, and I know about pressure in places as I relax. Except I don’t seem to fully relax. Over time (months), it’s tiring me out. The combination of thoughts in my head, not
feeling well at times, my body releasing pressure and the dreams/nightmares are
leaving me feeling very tired, probably exhausted at times. I feel really tired when I am woken up in the
mornings – and have sometimes fallen straight back to sleep, and had to be
woken up again. I just feel tense so
much of the time, in my head, in my body, and in my mind. People ask me if I’m OK, and usually I have
to give the “correct” answer because I’m around other people, or if they ask
whilst I’m away from the problems, then I probably am OK at that point in time.
It’s
hard saying I’m OK to someone who knows full well I’m not OK a lot of the time,
and even harder when they start asking questions around other people – there
are some people I just do not want to open up to or in front of, and I just
wish people would understand that.
Sometimes, people say I open up too much, and at other times, when I’ve
dealt with something at that moment, I’m not going to bring it back out whilst
it’s not there. The problem is, even
with the one or two people I can really talk to, I can’t always bring out the
issues if they’re not there at that moment.
And so, they stay hidden, and they come back. I’m not sure if a lot of the issues wouldn’t
come back anyway. Having such a small
number of people I can talk to, and people who want to properly talk to me is
hard, because when I need to talk, it feels like I never can. That’s why I sometimes let go more openly
than people say I should – because there is nobody at that time when there’s
something there I need to get out.
It’s
difficult having so few close friends, and now being involved in so few
activities compared with say a year ago.
I miss having something to do in my week, but it was no good having those
things which just added more hassle and upset than good. I lost friends by leaving some of the
voluntary activities I did. With so many
people, when I wasn’t there by default, they became uninterested in me, and
indeed some turned on me as an excuse for things that went on, and were
subsequently blamed on me, just because I couldn’t cope, and left or was pushed
away.
Instead,
I put time into doing stuff by myself.
The railway group I run sees a lot of my work, and some people
appreciate it at least. Even that has
politics between different groups, and representing railway enthusiasts is
difficult with recent events where minorities have caused issues for many in
how railway enthusiasts are perceived. I
have tried to volunteer in some different organisations to give back some of
what I have received over the years, which will also help me get away a bit
more at the weekends. Of the 4
applications I made, I only received a reply from one, saying I was on a
waiting list. I wonder if it’s much like
applying for a real job – am I getting the real answer? Will I get the chance to give something back?
Like
trying to find a real job, I just dream of the day I can get to prove myself to
someone who matters. I dream of being
able to support myself, and be in control of my destiny. At the moment, I feel I am stuck where I
am. Stuck in the politics I mentioned
above. Stuck in the cycle of challenge,
and not really getting out. I can’t
afford to move out of home, and I don’t really want to. It won’t solve the work issues, and then I go
home, am even more alone than I am here, and am skint and can’t have a day out
or something because all my money has gone on just living, and so I’m just as
trapped as I am now. There’s nothing
grabbing me to move out either, so I stick with what I have, and what I
know. Some days I cope, some days I
struggle, and some days I just don’t cope.
I
dream of finding more people who understand me, or want to understand me. I look on social media, and see people who
once gave me time, and I try to start a conversation. Occasionally I get a reply. Occasionally still, the conversation goes
past 3 or 4 messages. And more
occasionally still, the conversation might start up again on another day. It’s such a rarity for me – made harder still
when I just want to talk. Typing out
what I want to say is so hard sometimes, especially when things in my head are
raw. Up to a year or so ago, I used to
talk to people several times a week in the evenings, before I was ejected from
the group. Sometimes I just want to hear
a calming voice. Sometimes (well,
perhaps quite often), I just wish I could share a hug with someone. I use those words “share a hug” – hugs can be
so emotive, but so cold as well. A bit
like friendships and responses to messages I send. I can offer a hug, or even hug someone, but
if they don’t hug back, it’s really horrible.
It’s a bit like my attempts at friendships – I try, but I so often feel
so cold by the lack of responses which really mean anything.
I
don’t necessarily miss that group now, but I miss being able to actually talk
to people. Often when I try to start a
conversation, I feel like I’m stabbing in the dark, like trying to stab a star
with a pin in the night sky. I have so
few people to talk to, that when I find someone who will talk to me, I think I
push things too much, because I want to have more time talking to them than
they do talking to me. Most of the time,
they already have their friends, where I have them, and it feels like I have to
break into their world, which just doesn’t happen. There are, literally, one or two exceptions,
and even with perhaps my best friend, our friendship has been ridiculed by
others.
I
guess it’s the one thing I miss from school days – being around other
people. There were plenty of things I
found hard, but there was someone around to at least interact with. Sometimes, I feel very alone, and just want
to talk. I just can’t convert that want
into a conversation. I’ve started doing
simple things like wishing people happy birthday, in the hope that it might
spark a conversation. Sometimes I might
manage to ask “how are you?” or “I hope you’re doing OK?” Any reply more than half a sentence is a
major achievement. Sometimes I see
someone I know or knew having a hard time, and I pray for them, and send a
message of support or love, just to let them know I’m praying for them. Again, many don’t reply at all, which is
difficult for me. I feel like I’m
putting myself in their face, and probably giving them something they don’t
want to know about.
Sometimes
I see a really inspirational picture (well, something that I can relate to or
lifts me a bit), and I just want to let that person know that it’s made a
difference to me. Sometimes I manage to
send something; sometimes I even get a reply.
Once recently I got a reply that was more than half a sentence long,
which was real (I think/hope). Just that
little thing and that little bit of someone’s time gave me such a big lift that
evening after a difficult day. I imagine
it like receiving that hug back when I gave one – just so reassuring, uplifting
and peaceful. I even had an offer of
meeting up for a coffee if we were ever in the same area. This might sound harsh, but it’s not intended
to be, but for me, actually acting on that just seems so unrealistic and
foreign. It might be the shock of such
an offer, but I just don’t understand how to go about making something as
simple as meeting up with someone I’ve not seen for many years and going for a
coffee with them – that’s if we’re ever in the same area. For some it might be really trivial, but for
me, something like that is major event, and not something I know how to
do. I pray for the knowledge of what do and
time for such an eventuality.
So
– where to next? Well – Christmas to
start with. Everything around me looks
like it’ll stop again this year, when I just want to carry on. My family is all close, and we see each other
fairly regularly, so there’s nothing particularly unordinary about seeing
them. I’ve not got any of the voluntary
activities to fill some of the time this year either, and only a trip planned
at New Year, so Christmas will probably drag out. For the last couple of years, I’ve had the
period between Christmas and New Year off work.
This year might be more difficult with the situation as it is, and
having nothing planned to do. I can’t
seem to be allowed time off to just be at home, because I’m seen to be doing
nothing whilst others have to out themselves out to cover my job. I’m not sure which will give me more hassle,
working or not working?
I
wish I could look forwards and say things will get better. At the moment, I just see what is here
now. I feel like I’m reliant on other
people to help me along. To get a
different job, I need someone to take a chance on me, as I seemingly don’t tick
all of the boxes. I just want someone to
give me the chance to prove myself, but the world wants someone who ticks all the
boxes. To make friends, I need people
who want to make friends with me. I’ve
found one equal friendship this year, but I cannot rely on that one person –
they have their own life, other friends, family and other things. I have me.
My job, family and home life are so together, that I look for other
things outside of this one box, and always find it difficult to fill the gaps.
I
hope that in a few months, I can report back some positive steps – I just feel
very cautious about making things worse, rather than better at the moment. I just want what everyone else has – friends who
give me as much time as I want to give them.
I just want to cope with day to day life, and know how to react to
people, and understand them, and have them understand me. Maybe even share some proper hugs?
The
simple things are just such a challenge to me – each and every day.
I
wish you all a happy Christmas, and all the best for 2016.
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