Monday, June 27, 2005

The Journey begins!

Chronic illness can have a way of stopping you in your tracks and controlling you, so if you are going to do battle then you need to know the enemy. In my case it is mr lupus, (deliberate small m and small l) but it could easily be cancer, ms, diabetes etc. mr lupus is currently squatting in my body, with his feet up on the coffee table of my life but he has no right to be there and as I laugh and gain a more positive approach to the situation I gain more control and as I do so I no longer play the role of victim so my wish for you whether you have fallen victim to him or any of his chronic friends or you are the friend or relative of someone living from this place is that my story will help you to find your own daily coping strategies that are above and beyond the medicine cabinet.

Sitting in the middle of this flare it dawned on me that I only really had two choices with it all either to give in to the label that had been forced on me and in a society where labeling is paramount this would not be an unusual thing to do or I could turn it on its head and find my own way to fight through the roller coaster of challenges and emotions. Known as the great mimicker, lupus is different, so there are no hard and fast rules, no accepted code of conduct and no prescribed way of doing things you simply have to find the way that works for you. So not wanting to give up in the face of a challenge that’s exactly what I intend to do and I’d like to invite you along for the ride.

Rather than start at the beginning I thought I’d start where I am right now and interject with memories of things that have happened along the way. Feel free to comment and interject at anytime. For the past 8 weeks which now seems more like a life time I have been surviving on a diet of 60mgs of Prednisolne which I am sure is good for something if you include euphoric highs which mean that I can sometimes go for almost 24hrs without sleep, although that’s just my mind, my body really wants to shut up shop but my mind won’t let it. I’ve put on 5lbs in seven days, and have some really low moments but apart from that I’m sure that Prednisolne is doing a marvelous job.

I have been diagnosed with mononeuritis multiplex, a really posh name for damage to more than one nerve area and I have just started a course of chemotherapy yes you heard that one right chemotherapy. I thought that was just for cancer but apparently not but I’m still not sure about it all because the information I have been able to glean is quite, um sketchy which reminds me that doctors actually make their living out of me being sick which really is an interesting food for thought that if I wasn’t sick they wouldn’t have job to do quite scary really but it also means that unless I can have an understanding of me from a well place I am destined to continue operating under the label sick I perish that thought.

I have decided that if I was going to be labeled sick then it really needed to mean something so here goes my definition of sick please feel free to add or share your own.

S.I.C.K = Starting Important Course of Knowledge and self discovery. Interesting way to look at it all I know but one that works for me well it at least helps to reduce those days of feeling sorry for myself. Great when my doctor helpfully points out that I am sick I simply smile to myself as I remember I am really on a voyage of self discovery and as my mother said what doesn’t kill will fatten well I have no immediate intention of the former (okay God may have other plans) come to think of it I am not too keen on the latter either but you get the drift, it’s all bound to make me stronger.

This week’s S.I.C.K suggestion
Find yourself a S.I.C.K buddy someone you can share your thoughts and emotions with that can help you to laugh again.

S.I.C.K thought for the day‘What you focus on is what you miss’ Don’t let lupus be the only lens you see the world through

1 comment:

Crew Koos said...

Once again great post !!
Congratulation !!