It's still okay to observe!

Happy World lupus Day! 

Okay I know it was yesterday, but I’m living under the umbrella of lupus so I can be forgiven for running slowly. It’s not that I forgot it’s just that I couldn’t get my act together and by the time I did, well it was today.  

So seeing as we are living with lupus everyday I thought that it was acceptable to acknowledge mr lupus today. I know that it is not quite the same as if we observed it on the actual day and the rest of the world may not be watching, in the same way as they were yesterday, but I am sure we can still make a lupus ripple. 

Situation makeover

In fact lets give this situation a makeover, what I am actually suggesting is that we simply extend World lupus Day to today to encourage everyone who didn’t get a chance to observe it yesterday does not feel that they have missed the opportunity. Well isn’t life all about perspective?

It feels as though we should be observing a 1-minute silence or something like that in anticipation of his death. Yes that’s exactly what I want to do, so let’s do it! 

Lupus pause 

For the next minute or so, I want you to stop what you are doing and dream of a time when lupus will be a thing of the past, a time when men and women, young and old, black and white will not be subjected to the antics of mr lupus. A time when people like myself, our families and friends, will feel free again to be and do all the things they want to whenever they want to. (This reminds me of Martin Luther King and the I have a Dream speech. Watch this space I may just write my own) 

Okay, I realise that this may take a little longer than 1 minute so take whatever time you need and then get a glass of whatever your favourite tipple is (mine is sparkling mineral water with a slice of lemon) and join me in raising your glass in honour of the death of mr lupus.

For more information about ‘World lupus Day’ visit http://www.worldlupusday.org/ 

Can you see it?

Sometimes the very things that help us are the things we avoid. I really don’t understand the process particularly as I watch myself time and time again avoid writing about my journey through living and laughing with mr lupus, although I know that crafting words is my gift (it’s important to blow your own trumpet otherwise it will get rusty) and not only does it help me, it also helps others. So today I have issued myself with a challenge to write a little everyday and document this journey in the vain hope that it will not only help me but also help you too.

What is the one thing you can do, even at the height of your battle with mr lupus that gives you some relief or at least distracts you from yet another clash with the enemy?

I’ve got a theory on this one (no surprises there) and yes I am going to lay 100% of the blame at mr lupus’ door (I‘ll check up on my own weaknesses later but for now it‘s mr lupus‘ fault). One of the greatest weapons mr lupus has in his arsenal and uses the most is distraction. he does his best to prevent you from looking at the glass as half full and focuses your attention firmly and squarely on just how bad everything is. Don’t get me wrong I am not trying to trivialise the pain and the challenges he brings, I’m right there with you, what I am saying is that his presence always blocks us from seeing anything else.

For example last week I woke up in pain, you know that debilitating kind of pain where you can’t find a comfortable position to lay in, where horizontal is more preferable to vertical and where sleep no longer wants to hang out with you. I spent the whole day feeling dejected, asking myself questions that were only designed to make me feel bad.

• Why am I here AGAIN?
• Is this how my life is always going to be?
• Am I ever going to be better?
• How can I ever, earn a living, find a partner etc.

Are any of these questions familiar to you?
I spent a whole day asking them, and refusing to go to hospital as though not going to hospital is step one in my pain management regime. Needless to say after 10 hours (yes I waited that long) I found myself lying uncomfortably on a hospital gurney with my blood pressure unhealthily high and friends looking uncomfortable until the cavalry arrived in the form of pain relief that helped me to drift off to a comfortable sleep and leave the battles with mr lupus for another day.

Could I have written anything at this point, of course not, it was taking all my energy to breath, but it was a point at which I could:

• Consciously store information to write and share later.
• Have chosen to recognise that I had been in a similar place before and I had survived!
• Have recognised the mr lupus distraction technique and remembered the glass is half full even when it is half empty and even when I can’t actually see it.

So I’ve decided that I need to create a ‘lupus recovery kit’ including the things I need to help me through crisis’s like this and make the road to recovery shorter so watch this space as I discover and share what works for me and you discover what you need to help your remember and see the glass as half full.

What are you going to do?
What is the one thing you can do, even at the height of your battle with mr lupus that gives you some relief or at least distracts you from yet another clash with the enemy?

Just that one word

I love words and admire their power and beauty and recently I realised the power they have to distract, destroy and confuse. I went to my doctor in my usual chirpy fashion prepared to have the usual chat about what’s been happening in my world with mr lupus, drugs and rock and roll (oops wrong conversation) anyway you get my drift. I sat down, we exchanged pleasantries checked on my blood count and then had a discussion about my drug taking habits.

I must admit I have not been too great at taking my tablets, I think it is a ploy by mr lupus to make me into a junkie, and so was unable to answer the questions as affectively as my doctor would have liked. That is when she said it, the one word that turned my whole world upside down. I am going to repeat it here but in a whisper because it is not my word and I have no intention of giving it any more power than it already has ‘relapse’ Now I’ve said it, I will not say it again if I need to I will simply refer to it as the ‘r’ word. This was a word that did not feature in my vocabulary, although it’s currently trying to find a way in, and until that moment it held no meaning for me.

This got me thinking (no not about the ‘r’ word) and reconnecting to a long held belief that our words frame our worlds. By the language we use we determine the content and quality of our lives. I’m sure you have heard about the laws of attraction well our words are one of the ways it demonstrates its presence.

In my effort to create a world where the ‘r’ word doesn’t feel welcome I have paid closer attention to the words I use on a daily basis and chose to eliminate two of them from my vocabulary because I didn’t believe that they were helping me to conquer my enemy mr lupus or other things in my life for that matter. The two words which I will only repeat (in a whisper) here for the benefit of you understanding what I am talking about are:
but: because it almost always comes before an excuse or apology. I would love to meet you today but my lupus is playing up
try: because I now believe that you either are or you aren’t there is no grey bit in between. How can I try to drive? I am either driving or I am not simple.

I am finding other more empowering ways to say the things I want to say and whilst it is a challenge, I really have to think before I speak, it really does give a different perspective on things.

What word(s), if you removed them from your world would provide you with a whole new perspective and more of the silver lining thinking?

I challenge you to do something today.

Remember your words are some of the most powerful tools at your disposal so use them well. Email me and I’ll send you my ABC of words.

I’m back!

Yes I know it’s been a while since last I blogged (I wonder if that word is in the dictionary) so before I get talking about what’s happening now let me give you a whirl wind tour on what has happened since last we spoke.

I had more chemo, swapped my hospital waiting room for a spot on the beaches of Barbados, Antigua and Jamaica for two months. I though, if I was going to be sitting at home for long periods of time, that home might as well be in the Caribbean.

Lucky so and so I hear you say, but before you get excited please note that this trip was shortly after chemo, my right leg was not working for me in the way that we both knew it could and to top it all my doctor told me not to go. In fact her very words were “if you choose to get on the plane tomorrow (yes we had an appointment the day before) you will be travelling against medical advice” and just in case that was not enough my GP called me (yes she rang me) and said she wanted to see me. My blood pressure was up and she didn’t think it was advisable for me to travel. Well through the tears this seemed like the very reason I needed to get on a plane and get the hell out of here. It was now official doctors make me sick!

And because it’s not like me to take any notice of someone telling me I am sick and therefore can’t... (I really have to arrive at that conclusion myself after all life is just a great adventure right?) I decided I would go anyway. What’s the worst that could happen? After all I had already done the hospital thing in Dominican Republic (Remember fractured ankle leg in plaster for the last week of the holiday).

With passport and ticket in hand I confidently boarded a plane bound for sunny Barbados. I felt like a radical fighting for justice, except on the eight hour plane journey and during the first week in the sun where I’m convinced mr lupus brought in reinforcements giving a whole new meaning to the word pain.

Shear determination or ignorance I’m not sure which made me stick it out for two months. I rested when necessary or when forced to and made the most of my hiatus and came back home safely only to be confronted with the welcome back committee of three to six months more chemo.

Having braved the elements, endured the tropical conditions, which you know is no mean feat for someone living with mr lupus, I was not going to allow mr lupus or his fellow conspirators (my doctors) to put me through the chemo hell I had endured for nine months previously.

I said no and chose freedom instead, but with all decisions we make there is always a price to pay! And I guess that is where the story begins…