"Disability Sucks" or "How I Learned to Start Stressing and Hate My Employer"

As you may have gathered by now, I am disabled. I will be disabled for the rest of my life (unless they find a miracle cure for all three of my conditions). Being disabled, even in this so called enlightened age, is a hard struggle every day, particularly when the disability is invisible. It's unbelievably difficult to go to bed at night, knowing you'll have to get up at least twice due to the pain you're in. It's incredibly frustrating not being able to do the simplest of tasks, such as dress yourself properly or make a cup of tea, because you're too weak or it hurts too much. It's hugely demeaning to have 'accidents' because it takes you so long to get to the loo. It's amazingly soul destroying and isolating not be able to work with your colleagues because you can't get to your workplace or stay there for a full day. Some of you will be able to appreciate this but it appears my employer does not.

Two years ago when I was disagnosed with FMS, I underwent a referal to the Occupational Health Advisers. They confirmed I was covered under legislation and agreed that working from home when I needed to was a sensible way forward. My manager agreed and since then, I have done just that. However, they 'forgot' the little matter of providing me with any equipment to do my job so I've been using my own.

In May this year I'd finally had enough of having to muddle through and told my new manager I wanted a works laptop and phone. Hardly a big deal I thought. How wrong I was. I was told no, as there was no business benefit. I argued that legally they couldn't discriminate against me in that way. They then decided to refer me to the Occupational Health Advisers again. The OHA report came back saying I needed a home assessment to determine what equipment they should get me. Good, I think. It would appear though that OHA referals are meaningless because I was then told that I could no longer work from home at all and would have to attend the office every day.

Now, as you can imagine I wasn't too chuffed about this, so I pointed out that this was wrong and they should go away and re-think. Today I was told that the OHA report was rubbish and I they have to start the referral process all over again. Oh, and apparantly now the role of OHA is to back up whatever management say because apparantly I don't now need a home assessment, it has to be an office based one.

Today, for the first time in a very long time, my employer made me sob. I sat there, heartbroken, because in spite of being a very capable and dedicated employee, I was being made to suffer because my employer finds disabled people too difficult to deal with. I'm now terrified that if someone doesn't do something soon, I will be forced to attend the office everyday which is impossible for me. I'm terrified that when they very quickly realise I can't do what they demand and end up going sick, they will sack me. I'm terrified that any shred of dignity I've managed to hang onto since falling foul of this disability will be ripped away from me.

So my friends, I'm sorry if I'm not my usual cheerful self right now. If you'd like to see normal service to resume, go see my employer and kick them somewhere it will hurt.

Relativity

No...nothing to do with Mr Einstein and his amazing theories. More to do with the fact that everyone's experiences, emotions and troubles are relative to them. Let me explain....

I'm in pain. A lot of pain. Every day. OK, I'm not dying. Fair enough, I'm generally in good health. Yeah, I know I'm not starving/in a drought/at war/oppressed. All that's well and and good but I'm still in pain. A lot of pain. Every day.

It doesn't matter how much I appreciate what other people are experiencing or how much sympathy I have for them. My experience is relative to me and my circumstances. Being understanding of other peoples plight doesn't alter the fact of my own suffering, however trivial it might seem.

Equally, when the other half comes home from work and has had a crap day, the fact that I'm in pain doesn't detract from the bad time he's having, even though he has sympathy for me. It's relative to him.

So where am I going with this? Well, I guess I'm saying that none of us has to be martyrs to our suffering, whatever form it takes, in case someone else is having a 'worse' time. It's ok to say "things are pretty shit at the moment" and be entitled to some understanding.

Oh, and on the subject of understanding....when someone is suffering it's not enough to say "I understand what you're going through" and assume that absolves you of responsibility. It's not enough to ask someone how they are and assume that just by asking you've done your duty. If someone is suffering, do something practical to help them. Even if it's just doing doing the washing up without being asked, or tidying up your own mess. Understanding is a wonderful thing but it means nothing if it's not backed up with some action.

So there we have it. I'm in a lot of pain, every day, and I'm entitled to express that and expect some help from those around me. It doesn't make me weak, it doesn't make me heartless, it just makes me human.

Oh and just for the record, Einstein rocks!

Water Water Everywhere...

Well as you all know by now, I am disabled and the cold wet weather really plays havoc with my condition. Having had a lovely couple of weeks weather wise, I was really starting to feel quite well and then the heavens opened this evening. I popped to the local shop and ended up soaking wet so was having a typically British whinge about the bad weather when I was severly told off by a random woman in the shop.

"We're having a water shortage don't you know and we need the rain" she states emphatically.

I really wasn't in the mood for a discussion, having only stopped in to get some tea and fags so just nodded and shuffled off home again. The thing is, it really bugs me.

We live on an island, with lots of rivers and a temporate climate, yet we regularly have problems with shortages of water, both domestic and industrial. Yet other European countries, landlocked and much warmer, don't seem to suffer the same issues. Why?

Why do we not invest in desalinisation? Why do we not upgrade/repair our ancient water systems? Why do we, the 'consumer' pay through the nose for water supplies and sewage removal only to be told we can't use the water as there isn't enough?

It's madness. The gutters near my house are literally overflowing with water right now but next week we'll be told "save water, don't use hosepipes, we're almost a desert".

It's another example of a privatised industry ripping off the public of our country. It's what happens when a government is more interested in money than the lives of the people it's meant to represent.

I could go on, but I'm cold and wet and desperately need a cup of tea......

Ode To The Woman In The Pink Top

I am disabled. I have FMS which, for the uninitiated, doesn't stand for fuckingmegaspastic but Fibromyalgia Syndrome. It's a non life threatening neurological condition for which there is no cure and very little in the way of significant treatment. I'm able to do a full time job with some adjustments and I don't get any benefits or help to manage my condition. I use a stick when I go out to help with walking and balance. Other than that, I pretty much get on with it. I refuse to be brought down by the change this condition has brought to my life. Today I had to travel to London to speak at a meeting. All was going well with my travels until it was time to get the train home.

I understand that after a long day at work, everyone is tired and wants to sit down. I also feel tired after a day at work. Then again one of the symptoms of FMS is chronic fatigue so I feel tired all the time. Not just a bit sleepy or worn out but utterly, totally, mentally and physically exhausted. So tired that I can bearly lift my arms or move my legs. So exhausted that I feel like my bones are made of lead. So worn out that stringing a coherent sentence together is a challenge. The other major symptom is the accute pain I have in all my muscles and joints. Burning, stabbing, shooting pains in my legs and arms. Stiffness and pain in my neck and spine. Crippling headaches and facial pains. That's without mentioning the poor balance I have, the numbness I get in my feet and hands. The problematic eyesight, inability to sleep for longer than three hours and so on.......

I understand that the price of a ticket is costly and people feel that entitles them to a seat. I also find the cost of travel expensive. I don't get any financial help in spite of the increased cost that living with a disability brings. The Government don't consider my condition warrants any assistance. So I pay out more than able bodied people just to live a semi normal life through no fault of my own.

So what's all this about? Am I having a 'feeling sorry for myself' moment? No.

I've said all this because I want to make able bodied people who use public transport wake up to the ignorance and disrespect they show when a disabled person gets on a bus or a train and they watch them struggle and STILL don't give up their seat.

So back to my train home....

To you, the young man in your silk blend purple shirt, glancing at me from time to time with a pitying smile on your face. I don't want your pity, I want your seat.

To you, the young man in the white designer jacket and the bottle blond hair who stared at me all the way home, whilst sucking your teeth. Yes I have a walking stick, not a second head. But if I did have two heads, so what? I don't want your respect, I want your seat.

To you, the middle aged EDL supporter, taking up two seats clearly marked as reserved for disabled people because you had a sports bag with you. I don't want your ignorance, I want your seat.

To all the other fit and able people on the train, who covertly stared at me whilst not looking me in the eye because they were ashamed that they knew they wouldn't be the one to stand up and offer me a seat. I don't want your shame, I want your seat.

To you, the lovely woman in the pink top, who in spite of having a heavy bag, in spite of being a woman on a train full of men and in spite of being obviously knackered was the only damn person on the train to get up, smile and offer me her seat, thank you. You are a perfect stranger who I will never meet again but you touched my life today. You gave me your seat.