Thursday, June 30, 2005

The Road to Wellness!

Today I didn’t quite get into the relaxation thing but I did get out and about in the glorious sunshine okay I know that was because I had to go to the hospital but I did get taken out for lunch. I’d love to tell you that it was a gorgeous hunk whose 6ft athletic frame was sitting opposite me looking lovingly into my eyes but it wasn’t it was just my dad (but hooray for dads, they love you any way) and the good thing is I am no longer wired, well that’s not strictly true as Prednisolne is still up to its tricks but I am no longer a slave to the wires of the heart trace gadget. The funny thing is I spent 24hrs with this thing monitoring my every heart beat and then at the hospital they take it away and simply say goodbye. I guess it just doesn’t occur to them that you might be just a little bit curious about the results.

As I didn’t really relax today I’ll guess I’ll just have to do the rest thing, which is quite timely because quite frankly I’m tired.

I did have some pearls of wisdom today, I realized that anywhere between sick and well is on the road to wellness so instead of the doctors definition I’ve decided to ditch the sick label, I know that I spent a long time working on the acronym (S.I.C.K = Starting Important Course of Knowledge and self discovery) and I will use it to redefine what doctors say but as for my definition of myself that’s something completely different.

I must admit to feeling a bit (well a whole lot actually) down today it all just seems so much. I’m not really sure whether I am coming or going and if so from where. I can’t quite put my finger on what mr lupus is up to but whatever it is I don’t like it. I can’t quite work out if I am feeling unwell or if this feeling is more to do with the fact that I can’t quite see a light at the end of the tunnel. But all those thoughts of doom and gloom simply served as a jumpstart for my positive thinking gene which thankfully is always lurking somewhere around.

So in the midst of this darkness I have redefined myself as a voyager on the road to wellness (wasn’t there a movie called on the road to Entebbe?) I love traveling and there’s such an air of mystery, excitement and intrigue about a journey into the unknown and let’s face it living with mr lupus really is about living with the unknown so why not make that work to my advantage.

So here’s my thinking. I am going to pack my suitcase (only the bare essentials of course), get my travel insurance (laughter and positive thinking) and hit the wellness road creating a vision of where I am going and how I want to get there. I’ll start with a vision of how I am going to look (vibrant, spiritual, sensual and of course slim) well isn’t that what creating a vision is all about?

The only way forward is to take action so I guess I had better hit the road, but I probably need to get some rest first.

Thought for the day
Create a dream wall or something similar put pictures, scriptures, drawings sketches of things that remind you of you, who you are going to be when you beat this all and remember that you need to keep moving because even if you are on the right road if you just sit there you will get run over.

Wednesday, June 29, 2005

It's official the road to hell is paved with good intentions!

That’s what my mother always told me and I know what she means, all that talk yesterday about sitting in the park between hospital visits etc was just that I’m afraid. Having walked to the hospital, allowed them to take a sample of my life juice (which reminds me I really must find out more about what they are actually looking for with these blood tests) and to take my blood pressure whilst I waited for the results (which by the way is fine) I was so tired that I had to stop for a while.

On the topic of my blood pressure, all is not fine and like all good medical personnel they have suggested that I visit my GP who may want to medicate me… as if I don’t have enough drugs to take. Funny they didn’t think that it might simply have something to do with the stress in my life (which by the way seems to be running quite high at the moment) so wouldn’t a prescription to a spa or for a soothing massage by a bunch of handsome men be more appropriate and far more beneficial?

I am not selfish I want you to join me as well.
Now isn't this the kind of prescription that you would happily pay money for? I know I would. Anyone know where I can get one?

All was not lost however, and I did do something constructive; I relaxed as opposed to rested. I’m sure it amounts to the same kind of thing but somehow there was more pleasure from the relaxing thing today than the whole resting thing over the past eight plus weeks, and it also seems like the kind of thing you would only do if you were well. So operating from a well place (it’s all a matter of focus) I opened the hospital recliner (the Chemo suite is full of comfy armchair recliners) got myself a bunch of magazines, got the nurse to bring me some light refreshment, plugged in my ipod and disappeared into the world of Alicia Keyes caressing my senses with her dulcet tones.

My second hospital stop of the day was a quick one and now I am attached to a gadget that is monitoring my heart beat (reminds me of words from a song every beat of my heart.. I don’t know the rest), which also led to a chance encounter from an encouraging stranger over a rack of clothes (a woman still has to keep abreast of the shopping thing).

I couldn’t really hide the wires coming from your chest so she stopped me to give me an encouraging nod and to tell me that it was all going to be okay and she knew because she had been through a similar experience.

Although she didn’t really know what my experience was, it was nice to know that all compassion is not dead in the world and we chatted easily about a whole host of things including food, nutrition and big boobs (see there really is more to life than mr lupus). She even gave me her telephone number. I may never call her but it’s nice to know that I have not lost my touch for making new friends.

Not at all bad for a day at the hospital. I think I am going to try that relaxing and going out thing again tomorrow.

Thought for the day
It is still possible to feel pleasure in the middle of the pain and discomfort. Relaxing is the way to go and I recommend a healthy daily dose of it

Tuesday, June 28, 2005

That Monday morning feeling even though it's clearly Tuesday!

I’m not at all sure about today. I woke up this morning and although it’s clearly Tuesday I am burdened with a distinct Monday morning feeling and I realised that one of the things that mr lupus is currently doing is robbing me of focus and I am angry about it.

A quote I recently came across keeps ringing in my head “what you focus on is what you miss” which clearly explains the problem. Sitting here amidst this pile of drugs, hospital appointments (I’ve got two today), fatigue and general discomfort it becomes really hard to see anything else which then really begs the question what kind of life is this?

I know that there are people worst off than me but somehow that provides little comfort or solace to these feelings of inadequacy. Some how all of this makes me feel less than but then again that’s just probably Prednisolone talking on its downward curve.

But that’s okay I know what mr lupus is up to he’s simply trying to keep me in doors all to himself. He seems to be that possessive kind of guy, but I’m not going to let him. I think we’ve spent far too much exclusive time already. In fact we’ve probably spent more ‘quality’ time together than most marriages these days.

Talking about marriages I’ve recently joined a dating agency, well a girl needs a bit of TLC every now and then and that seemed to be the only way to get some from the comfort of my sofa. No thunderbolts or lightening rods have struck on Love Street yet but I am quietly optimistic and it sure beats the feelings of unattractive and undesirable. So watch this space I may have something to report.

I’ve decided to create my own antidote to today, well I’ve always been able to see the silver lining in the clouds, I am going to get out. Okay I know that I need to pace myself, drink plenty of water, stay out of the sun etc. but it has to be healthy to get out more in environments where the question how are you feeling today is not the main topic of conversation. This sitting in the house ‘resting’ obviously isn’t all that it is cracked up to be. So today between hospital appointments I’m gonna get some fresh air and go sit in the park. I might even take a picnic. Feel free to join me.

Thought for the day
Go out to deliberately create Memory Moments (I’ve just coined that phrase, hooray my creative juices are flowing again). Get yourself a scrapbook and name it your mountaintop journal and in it write, draw, stick pictures of the things that you are experiencing that make you laugh, make you smile or make you cry with joy so that in those dark, uncomfortable moments you have something to look back on to help lift the fog and move you forward.

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