Karen's Story

I've just been to the website and felt I wanted to write and send my story to you.

Okay, now where to start?........From the beginning I guess.

In 1970 at the age of 3 it was discovered that I had diabetes. Now, I, myself do not remember much about this time just stories from my mum and dad telling me how bad I was, they found me drinking a bottle of undiluted orange squash in our hallway and had an inkling that something was wrong, the fact they had to hold me down to give me my injections at that age, and how they felt guilt-ridden at having to do that but also knowing it was the only way to keep me alive.

The years passed by, I did my schooling and went onto college and got a business qualification. During this time a few glitches were showing in my health and it was found that I had an underactive thyroid, so I was put on pills for that, nothing unusual there with the diabetes. I got a job as a part-time clerical assistant in a small factory. The health still pretty much plodding along. Left that job and worked as a departmental secretary to the director and a sales team. Enjoyed my teens, as you do and things were okay, it seemed.

Time passed by and I began to work in the NHS. This is where my health really began to deteriorate. As the years passed more things started to show up. High blood pressure, changes in eyesight, kidneys, cholesterol. I was referred to the eye specialists at my hospital and my eyes showed up active diabetic retinopathy and they said it needed to be kept a close check on. Unfortunately my eyes haemorrhaged and I had to have my first operation, then another two following that. I lost my peripheral vision in both eyes and some central vision in my left eye. The rest was “saved.” At the moment the condition is dormant, but I have no guarantee that it will not happen again, as is the nature of the beast.

I was finding myself off sick from work an awful lot, mostly with bad stomachs. The powers that be picked up on this and decided it was time to do something about it. I had disciplinary meetings because of my health all this time having investigative procedures done to find out what was wrong. After lots of tests and other invasive procedures the conclusion was met that I had diabetic autonomic neuropathy of the gastric system which is caused by damage to the nerves and causes diarrhoea and bowel incontinence and also nausea and vomiting of an unpredictable nature. In February 2008 I was dismissed from my job on ill-health grounds as it was felt I was incapable of working any more. This was even deemed by the pensions agency which is run by ATOS, but this apparently has no bearing on the same ATOS that deal with the benefits system. Fascinating huh? It was a scary time having to apply for benefits for the first time ever. I did not really know what I was doing, but I did it and rode the storm. Since then I have found out that I have Vitamin B12 deficiency and low iron count, along with my severe kidney disease this also means I suffer from chronic tiredness and sometimes I do not get out of bed and am unable to function because of this.

I’ve had a medical, which was a farce, never heard anything and was called for another in August this year. I have been placed in the Work Related Activity Group, but I have appealed this and am now waiting to hear something.

The true facts of the whole thing is that my health is so poor now that I could never work again. I feel so ill some days, either because I’m throwing up or on the loo (or not as the case may be), suffering with terrible stomach pains and just about enough energy to drag myself out of bed only to end up back in there because I feel so awful. I never foresaw any of this happening, but it has, and it’s not nice having been independent to find yourself so reliant on other people to help you, although I have a wonderful husband who helps me with everything. If I have a “good day” I see it more as a treat because it happens so rarely, I try to do something with it, but not much because the tiredness will hit me, sooner or later.

I think the government’s stance on disability is inexcusable. Life deals a heavy hand, and one that is sometimes difficult to live with, Mr Cameron of all people should know that, but his son did not reach the age where big decisions were going to need to be made, but then I guess he wouldn’t have had to go through the ATOS medicals we have to with a “trained medical professional” who is only there to tick boxes that suit their own opinions and not show a true reflection of how things really are. Would things have been different if Mr Cameron had to take on his son’s own future? That’s something we’ll never know.

So, what happens next is anyone’s guess, but none of us are devoid of disability striking us at any age or walk in life. A sudden accident that takes away our sight, or our ability to walk, talk or use our arms and legs. An incurable disease that will cause our health to deteriorate so that we cannot function. If this happened to any of the government members, what would they do if they were told, “you’ve got to have an ATOS medical.” Or, “off down the JobCentre you go because you can still work of course, ATOS said so?” How would that change their lives and the impact it has on everything they do every single second of their living lives?

The trouble is the government do not seem to be able to see this in their blinkered lives and opinions.

It’s a bitter pill to swallow, but some of us have to do that, along with many other pills and live with our disabilities, none of which we asked for, for the rest of our lives...................