Had to attend a PTW interview today, as it has now been decided by the government that anyone claiming any kind of disability benefit has to "earn" that benefit. Also, that dependant upon your level of disability, and although you might not be able to return to to the career or job that you had previously, you could be fit enough to carry out other types of role. You are now "categorized" after assessment and you will fall into a number of groups.

Fair enough, I don't want to be out of work. However, as a person with Chiari and Syringomyelia I cannot guarantee to commit to any new employer that I will be able to make it into a work place by 9am every morning, every day of the week, nor to finish the entire day once I get there. Never mind thinking about what kind of work I could do when I got there.

It's adding fuel to the old saying "but you don't look ill!"

I suffer from insomnia, I am in constant pain, my mobility is poor, my energy levels fluctuate between low and and even lower, my manual dexterity isn't great, I tire very easily, my concentration levels aren't always that great, I can't sit in one position, or stand for more than 20 minutes without the need to get up and walk about. If I try and do this for more than a couple of hours I become exhausted and need to rest by laying down somewhere whilst the pain and discomfort eases, I am irritable and have general mood swings where my interaction with people can be very strained at times. I have general muscular weakness, my joints don't seem to want to work half the time, I have difficulty walking, sitting and standing. I get painful muscle strains if I suddenly reach out to lift something or reach above shoulder height. I often forget that I now need to think about things that I have done for many years just out of instinct. My body often reminds me angrily.

Sure I can walk up stairs, not 2 or 3 steps at a time like I used to and I can't do it too often without the risk of my legs giving way and having a potentially dangerous tumble. Risk assess that in the work place! Ok, so I can't drive to work - I could always get the bus? I have to walk to ge the the bus stop and stand there waiting in all kinds of weather. I have to sit or stand on a moving bus for prolonged periods of time. I have to walk from the bus stop to work or to another change of buses. All of this, before I get to work? I am sure that I would be ready for an hours kip after all that, even after one day. Then I have to do it all again at the end of the day and fit a days work in between?

It's like I am wearing a "lead ocean survival suit" and they have rigged up one of those "electric shock games" inserted into my muscles and joints to go off when you move too quickly or strain.....and just for luck a surprise jolt every 5 or 10 minutes anyway!

Don't get me wrong, I used to work, I used to work long hours often driving hundreds of miles to get to an appointment, some times good hard manual graft appointments too. Then I used to travel to other appointments, or travel home, or to a hotel for an over night stay. I used to work a 60 plus hour week which included a lot of travelling / driving, so I am not scared of a good weeks work. I am being practical and realistic. I know my own bodies limitations and what I am capable or not capable of doing.

I have only ever claimed benefit one other time in my life, and even then it was for a matter of a couple of weeks when I was younger and looking for a job. The rest of my time I have been in full-time employment, paying an ever increasing tax bill and National Insurance into the system that I thought would one day look after me when I needed it most. I have also spent years paying into PPI schemes to protect my finances. It seems that this is also something where you can be personally penalised because you have had the foresight to protect yourself and be proactive.

I went to the meeting today already having researched what jobs I could do weeks and weeks ago, and with an action plan of what I had done about it. The first that they had seen in a very long time at that stage. So I can prove that I do not belong to the minority of people who are currently bathing in lazyness in the "system" and just oblivious to what is right and wrong.

However, like I said, I am looking at something that I can do to get back to work.

Even doing this blog for a couple of hours a day (fragmented by getting up and moving around and coming back to posts later in the day) takes a huge amount of effort, and effort that more often that not leaves me with a blinding headache and unable to much else for the rest of the day.

I am sure that if I tried to work in a normal working environment, then I would be subject to their sickness and absence disciplinary policy within a couple of weeks - never mind not being able to keep up with any prescribed work load.

I have also got a DWP tribunal hearing coming up soon, because my return to work health assessment stated that I was fit to return to work fwithin the next 6 months, but the DWP took that as from June this year. That was only 8 weeks post decompression surgery!
When I was "assessed" the doctor told me that she knew nothing about Chiari malformation and Syringomyelia but that she would assess me on my current symptoms. Well for one I was post op 8 weeks, and now even though I am over the operation, I am feeling the effects of the nerve damage caused by my Syrinx, and have the issues described above.

They get themselves in such a muddle trying to get you off claiming benefit, that they overlook the more serious side that "some people are truly unable to work" and there is only one person that suffers - us!

When you ask them about subsidised training, because you have worked out what you are capable of doing, they tell you that there is help available. When you look closer it is all of the "basic" stuff that the majority of us worked hard to achieve whilst in school, or just shortly after. Well, that's not going to help me get a job is it? I have got Maths and English O- Level's, I have been using Microsoft Word and Powerpoint for many years - and could possibly take the class if I could stand up for an hour at a time 4 times a day 5 days a week! But, they will not look at anything more substantial - that is down to me if I want to invest in my future - but I am skint, how can I afford it? OK, I will carry on claiming the pittance that they call Employment Support Allowance until I win the lottery?

On top of all of this, I am still trying to find out if my current symptoms are going to be with me for the rest of my life or are they going to worsen? I am worrying about paying bills, I am concerned about my general fitness and am frustrated that I am not the man that I once was. I am a different person, less positive, less forgiving of other peoples mistakes or their inexperience, ineptitude, rudeness or just down right lack of intelligence or social skills. I am worried that I can't be the dad to my kids that I wanted to be, the kind of husband that my wife has always deserved, a good brother, son and friend to those that I hold close and dear.

I have become a grumpy old Chiarian caught up in the system, being prejudiced against because I have a disability and regarded as a scrounger.

Does all of this sound familiar? Welcome to the world of a Chiarian.