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When I was younger I had an invisible dog called Bagsy, he was great fun and his favourite pastime was chasing my sister, Sue, up the street. The more she screamed asking me to control him, the more I shouted at him to leave her alone as I pretended to struggle and pull him back on his lead. Much to Sue's relief Bagsy is no longer with us, but I have fond memories of those times.

Now that I'm older I have another invisible partner, not a loveable Bassett Hound like Bagsy though, this one is a dangerous and nasty animal, Lupo the Wolf. Isn't that ironic?

He first appeared in the summer of 2001 when, to be honest, I wasn't even aware of his presence. He slowly drained the energy out of me, making me so tired I could barely move, then he crushed and gnawed away at my joints until they screamed with pain. I was suddenly unable to do the simplest tasks, like dress myself, walk, or even cut my own food.

I know I was very lucky getting a quick diagnosis, for in the October tests showed that I had Lupus, an illness that neither myself nor any of my family and friends had heard of before. Apart from my husband who remembered that Lupus was a professor in the Harry Potter books who turned into a werewolf!!! Very comforting news at the time!

Things started to fall into place, terrible growing pains as a child, three miscarriages and any viruses I had caught always took a long time to clear.

I was put onto steroids, azathioprine, plaquenil and strong painkillers to try and get my symptoms under control. I also have B12 injections every three months, thyroxine, folic acid and Vitamin D and calcium tablets.

The fatigue in itself is disabling. The pain in my joints can be agonising even now after taking medication for four years. I have had to give up my job as it became increasingly difficult to manage. I was always active, worked part-time, helped my husband run his own business, looked after our two young children, went to the Gym and swam three times a week, even kept on top of the housework and did the shopping. Not Superwoman, I know, just all the usual things we take for granted.

The most difficult thing I have found with Lupus is the sheer frustration, depending on others so much, losing my independence and confidence as my brain suddenly seems to turn into mush, the wrong words coming out when I speak and the inability to make even the simplest of decisions. I also became scared to go out on my own due to this.

My appearance has changed too, unfortunately not for the better, I have gained three stones in weight, due to the steroids but also to the lack of exercise and mobility, my hair took on the texture of a brillo pad at one time and I now have soft facial hair on my cheeks, each of these side effects is enough to depress the most easy going.

Lupo silently pounces onto my back, his heavy weight pushing me forward, at the same time he manages to curl himself around my body, crushing and squeezing all of my joints until they burn, leaving me too exhausted to shake him off. I have learnt to lie down and rest, hope that he’ll get bored with all this inactivity and will slink off again, at least for a while.

I look forward to the day when Lupo disappears as Bagsy did and I am sure that day will come, for I am not on my own I have a secret army he doesn't know about, they are the Doctors, Researchers and Scientists who are all keen to see the back of him. Also my fantastic husband and children who give me the strength to fight him off and keep me laughing. So watch out Lupo you haven't beaten me yet!
 

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