Lured with the promise of shinies

I know I have of late been rather sporadic in my posting, so I decided to clean up the site and make a bit more effort. Whilst in the middle of this and heartlessly deleting old posts that I'd decided were crap, someone talked me into looking at a different blogging site and I have to say, I was instantly converted *blushes*

So...if you are looking for me now, I won't be here.  You can find me at Dwarf Wench!

Virtually a Millionaire

While I do spend a lot of time online playing World of Warcraft, most people by now realise that I play it mainly to socialise with other people.  It gets a little lonely here at times and while I can't shimmy until I ache all over anymore (well no actually I can still do that, it just takes 5-10 seconds rather than 5-10 minutes!) I can in a virtual world fight monsters and cast spells.  However these things quickly take their toll of my energy and while it is mostly mental exertion, it still leaves me exhausted.  I've managed now to keep a balance of no more than a couple of hours doing questing and raiding with my friends.  So what is it I do with all the rest of the time I have between resting breaks?  Gold, my friend...gold.

I discovered many months ago that playing about with the in game Auction House doesn't drain my energy.  The actual mental input is minimal and as I'm not being forced to concentrate on flashing lights, audio alarms and little green bars - which is my usual focus when healing my little raid team - I find that I can happily keep myself entertained for ages.  Who knew how interesting it could be to watch the little piles of gold come rolling in?  At first I collected gold because there would often be weeks when I couldn't join in at all and in order to make sure I could keep up with my friends and not fall too far behind, I started to amass a "rainy day" fund to enable me to purchase equipment when I would lag behind.  This soon spread to being able to fund Mr Wench's occasional wishes in WoW too (as he does all the real life work that pays for our accounts) until my little nest egg had reached around 20,000 gold! A fortune!  Perhaps not...

Getting heavily into the swing of my new little addiction, I decided to try to get to the gold cap for a character in the game.  At that time it was around 250k gold, which seemed so far away.  The week before I managed it, Blizzard moved the goal posts and stretched the character gold cap to 1 million gold (well actually its one copper short, but I'm not fussy).  Not one to give up easily, especially now that I was so determined to reach that elusive gold cap, I continued planning, scheming and counting the coppers until finally last month...

I also seem to have developed a fascinatingly melodious and psychedelic sunflower pet.

You'd think that would be enough, wouldn't you? My menagerie of WoW vanity pets has grown to the point of no longer having pets that I can use gold to purchase.  I have caught up with all the equipment I wanted to buy for my main character, and while lacking the energy to play the other characters, there seems little point to buying things for them.

But no...the second million awaits...and it has cookies!

The Insubstantial Enemy

For me, the most difficult part of ME has been an inability to fight back.

In the past, if something has upset me, I deal with it.  If a situation isn't working, I fix it. I'll admit that sometimes I get lazy and it may take a little while for me to change the situation, but I don't feel comfortable if things are wrong and I don't at least try to do something about it.

But where do you start to fight with ME?
I'm a social person at heart and feel miserable when I get lonely.  Yet having people visit me becomes exhausting incredibly quickly.  At the weekends when Mr Wenchie is at home and awake during the daytime, I become so tired just from the extra person being there or the noise from the television in the background.  Going out to visit other people now tends to require me to use the wheelchair, and although this means I can buy a little extra time to add to my mental strength at the cost of my physical strength, it still only grants a short visit and of course ensures that I will spend the next few days at least unable to move.

I'm a terrible patient.  I get frustrated and impatient very quickly and I like to be able to do things for myself.  I watch my body getting weaker each month and want to exercise to reverse the damage.  Yet exercising even just a small and gentle amount makes me more exhausted and the resulting recovery time leaves me more deconditioned than I started.

How do you fight an enemy that cannot be fought?  You can't work at getting better, as the effort you put into recovering worsens the condition.  I find that in an odd sort of way I feel relieved on the exhausted days.  On the bad days there is absolutely no denying in any way at all that I am physically ill.  I can't fool myself into thinking that I just imagined it and that there's not really anything wrong with me.  On the good days that is more difficult.  Having to stop before symptoms are in control means that it is easy at times to wonder if you are just under some delusion.  The days where you misjudge the energy you had and go too far are almost reassuring.

Thank heavens for technology!  I think I'd go crazy without the internet enabling me to contact people.

I cried like a baby

Its been a hell of a week!

Firstly, my computer decided that it was going to give up the ghost and spectacularly fried the hard drive.  My computer is my lifeline to the rest of the world as I can't just get up and go see people, so it left me feeling a little isolated.

To add to all this though, I woke up yesterday and my finger was itching and red and very uncomfortable.  After the best part of an hour, I managed to finally remove my engagement ring in case it got any worse.  I most definitely did not want to have to have my engagement ring cut in order to remove it from my finger.  After another hour or so the swelling had subsided to enough of a degree that the cause was apparent: I had gained enough weight that my ring would no longer fit my finger.

I was devastated.

Suffering from CFS (ME) is very frustrating for me because you can't just work harder at getting better.  Lack of exercise is gradually de-conditioning my muscles and I am gaining weight.  I can't actively exercise as this uses even more energy that I just don't have.  I have a series of exercises given to me by an Occupational Therapist from the CFS group at my local hospital, but these are just tools to try to prevent my muscles from wasting away really.  Much more than that is currently out of my reach.

I had spent many of my sessions with my doctor discussing the weight gain that I had little control over and she had reminded me that I'd lost it all once before and that when I have recovered from the CFS (ME) I can lose it all again, and that there wasn't really any point in worrying about the things I can't really change currently.  But now my ring doesn't fit.

Mr Wench came home from work to find me bawling my eyes out.  I'm not talking little lady-like tears here, I'm talking full on, nose the colour of a beetroot, uncontrollable hysterics.  I know that not being able to wear that ring makes no difference to how much Mr Wench loves me, or how much I love him.  We have put our wedding on hold for so long in order for me to be well enough to participate that not being able to wear my ring was just one more in a long list of frustrations.

But it was my ring.  Its beautiful.
And every time I glanced down at my hand and saw that little flash of light reflected from my ring it made me smile.

Now it is tied around my wrist with a piece of string but it isn't the same.

I know its silly to get so upset over such a trivial thing in the grand scheme of things, but it was one of the few things I could count on to lift my mood on a bad day, and now our wedding just looks further and further away.

Don't they know it's the end of the world?

Yesterday was one of the days that I term "bad days".  Everything ached to the point where it was too painful to move.  My mind felt confused and fogged and could not settle on any one thought for long and with no sort of clarity. On days like this there is nothing I can really do.  I can't just push through it in the hope that it wears off, as it never does, and instead means that I will have several days like this in a row.  I can't focus the muscles in my eyes enough to use the computer or watch television.  Noise is just irritating and makes my head hurt.  I gave in and spent the day laying on the sofa, occasionally playing a song on the MP3 player and then resting for a while before trying to listen to another one.

I was feeling rather frustrated and miserable, which really isn't uncommon for me on days like those.  I don't suffer from depression, but I defy anyone finding that yet again they are constrained to a day on the sofa with little that can entertain them to be happy about it.

One of the songs that I listened to became today's title because it hit a nerve.  The song speaks of a person's entire world ending because they have lost the person that they love and the amazement that nothing has changed for anyone else.  That your world has come to an end, but that everyone else doesn't notice.

Don't worry, I'm not about to tell you that Mr Wench and I are going our separate ways.  For me though, it does feel that a large part of my life has ended, or at least been put on hold, probably indefinitely.  I can't spend evenings hunched over a sewing machine enjoying creating myself a new outfit, as I can't concentrate on it for long enough and I make too many mistakes as well as struggling with the physical capability of sitting at the machine for any length of time.  I cannot sing, as my throat muscles tire too quickly and my voice constantly goes out of tune, much to my bitter frustration.  I can't dance.  I guess that is obvious as that is pure physical exertion, but something I had loved doing.

The problem is that the world hasn't ended for anyone else (except perhaps poor Mr Wench, struggling to look after me and keep me sane).  I watch the people I learned to dance with going on to perform wonderful dance shows. New dancers learning, surpassing me and going on to enjoy their performances.  Friends getting married and starting new families. Lives carrying on...

I'm just a stranger looking out at it all now.  People can't sit back and not get on with their lives just because mine is on hold.  I wouldn't want everyone to stop their busy lives either, not really.  I sit here trapped in my limbo, chatting through the faceless internet to the friends that I once spent so much time with as I cannot cope even with the limited strain of a phone conversation.  I keep myself happy with the thoughts of our wonderful wedding plans, that in reality we both know is unlikely to happen as I am just not physically capable of that level of social interaction currently.

Don't they know it's the end of the world? It ended when I got ME.

Where is the benefit of Benefits?

Today Mr Wench and I had a long talk and came to the decision that once the current tribunal case is over, we will no longer attempt to claim the benefits that I am due.

This might seem like a strange decision to some, but it comes down to sheer practicality.  So far I have been dragged all over London to medical assessments, interviews and work related advice sessions.  As I am unable to walk very far, and struggle to use public transport, every one of these meetings have required Mr Wench to take time off work in order to accompany me.  I have waded through endless forms that in all honesty are intentionally worded to confuse, each time draining my already limited energy and concentration for no visible result.

And each time one of these meetings is arranged or a new letter or form arrives, my silly ME ridden brain gets all stressed and makes my symptoms a lot worse for a few weeks.  It just isn't worth the fight.  The limited amount of money that I could possibly receive if they ever agree (and after more than a years worth of fighting that does begin to seem unlikely) is unlikely to ever compensate for the money we are losing due to Mr Wench missing work and the travel and recovery expenses of attending all these interviews.  I would be financially and medically better off by paying the government the couple of hundred pounds each year to cover my National Insurance contributions and keeping my health stable.

But this is where I have to ask myself why we even have these benefits.  I could have picked an illness that I do not have and lied my way through interviews gaining much more than I ever can by being honest.  Shouldn't these things be designed to help those that need it rather than rewarding those that don't?

All I know is that I just do not have the energy to waste on fighting a losing battle.

Exhausted

Yesterday I had to attend an interview that the local Job Centre believed would be helpful to me and therefore made mandatory. It was for people with different disabilities and was to enable them to chat through options that would hopefully lead to them becoming employed again.

Bearing this in mind, one would think that the location that they would choose for this interview would not be over 8 miles away, more than one mile from the nearest train station, and in the very back of a large open plan office on the first floor. That being said, at least the interviewer had a passing knowledge of my condition and the sort of limitations that come with it. Now if only he could teach the benefits office...

Returning home from what to most people would probably have been an inconvenience (but to me was a mammoth expedition akin to travelling from London to Edinburgh by car to participate in a marathon), I realised that despite my tiredness, I could still move. This is a dangerous realisation for me, as it makes me want to do things, yet I know that my body has already spent more energy than it should have and that any further activity will mean that the following day will find me without the ability to move at all. Being sensible, and after much urging from Mr Wench (who knows my symptoms even better than I do and can be objective when I can't), I agreed to miss out on the evening's raid, despite it being the night we expected to get Yogg-Saron down for the first time.

This morning, I know it was the right choice.

I ache, my muscles feel like someone else is operating them, and my brain seems to be clouded in a fog that feels like I am trying to use someone else's head. Imagine how I'd be today if I'd allowed myself to play World of Warcraft!