Tuesday, April 29, 2008

Lost moments!

She woke to find herself naked; the nightwear that had been tightly wound around her body was gone. This startled her and she hurriedly looked around the room to see if anyone was there or if anything had been disturbed.

Everything looked normal so what had happened to her in the night? She remembers falling asleep to the TV voices but nothing more. She had no dream recollections and as far as she could remember she had not left the comfort of her duvet’s inviting arms so what had happened to her clothes? She slowly put her feet on the floor, rubbed her eyes, stretched and gave thanks for a new day. She got up and sauntered gingerly to the bathroom and as she sat on the toilet she noticed her nightwear in a crumpled heap on the floor. She racked her brains for some memory, an image; something that would help her to make sense of it all and try as she might nothing came.

Is this the beginning of a steamy intense thriller? Nothing so exciting, it’s what happened to me last night but put in those words it gives it a whole new meaning and sounds so much more interesting than explaining the memory and mr lupus relationship. In fact I can’t wait to see whether there is another instalment tonight.

Isn’t it funny, well you have to find a way to deal with things like this, how large chunks of time just seem to disappear in a puff of smoke? Interestingly enough I remember the first time it happened to me. I was driving to a familiar destination when I got to a roundabout as I drove around it I realised that I didn’t know which exit to get off and so I drove around it a few more times, seven to be precise, hoping to be able to work out my exit by a series of elimination. When I found I didn’t even remember the road I had come down I resorted to sitting in the nearest petrol station and crying (well that seemed like a useful tool).

I did have the good sense to phone a friend whose sympathetic ear got me through the moment.

Since then other interesting things have happened but rather than panic I have labelled it as a mr lupus moment which I know will pass and some how it seems to go a lot quicker.

Saturday, April 26, 2008

3 minutes of fame!

I really wanted to share this with you yesterday, hot off the press so to speak, but having left my house without my crutches, (don’t ask) what happened when I got home didn’t really make allowances for that.

I’m describing the leaving house without crutches as an experimental procedure just to see whether they really make a difference in my life or whether it’s all in my mind (But please don’t try this at home). I am pleased to report that the experiment was an astounding success, I’m not particularly happy about the results but the experiment went fine, I made it to my destination and back.

It is now official that I need my crutch; it makes a huge difference to mobility in the moment but more importantly for the moment after. The reason I couldn’t share my 3 minutes of fame with you the moment I got home was because neither my legs nor mr lupus wanted me to. mr lupus stood there wagging his annoying finger at me just the way an irritating child does so that he could bask in the glory of my agony and tiredness. And my legs just looked at me accusingly asking WHY!

To remove myself from both my accusers I went to sleep on the settee without even removing my clothes (But I did manage to take my shoes off)

Now back to my 3 minutes of fame. Ben TV is a cable station, which to be perfectly honest with you I have never really watched, but they wanted to talk about lupus and I can do that and it was TV.

I was part of a panel of 3 people, Sherry whose partner (a man) was recently diagnosed, and Cynthia who organises awareness events for a range of health issues so I was the only who has lupus. You would have been proud of me I challenged the word suffering and stated that I am actually living with the condition (okay I should have used learning to live but still) It was a pleasant enough discussion but not enough time was allocated I, oops I mean we, could have spoken a lot longer.

Although the time slot didn’t really give the topic justice it worked for me:
- I made a new friend (I already knew Sherry)
- I can now add TV to my list of appearances
- It got me thinking.

Not bad for just 3 minutes of fame!

I’m really quite passionate about this lupus stuff not from a medical point of view or even for a pain point of view, but from a spiritual and practical point of view and I have something to say on the subject (quite a lot actually) so I am going to create platforms for myself to talk not necessarily just about lupus but about coping strategies, the power of laughter etc. (I’m still working on the topics so any suggestions)

I’ve even approached Ben TV (okay I know I don’t watch it and don’t really know who does but it could still be a useful platform) about doing a regular motivational, positive slot and they are interested.

What’s the learning point for you?
Don’t leave home without your crutches if you need them but more importantly push yourself (within reason of course) and do something different, try something you have never tried before and share it with others. I did!

Thursday, April 24, 2008


I just met up with an old friend who I have known for nearly 20 years (so they have been with me through the good times and the bad with mr lupus) I was therefore, surprised when they made the following statement in reply to my announcement that I was good (I had just finished delivering a workshop so being good meant more than just dealing with mr lupus) "just not very consistent, but that is not a critiscm" I found myself reeling at his audacity and I wanted to scream how dare you don’t you know what I am going through? Instead in an effort to compose myself I frantically searched the vaults of my mind to find the definitive answer that would absolve me of this accusation because of course IT WAS a critiscm!

I mumbled something from my defensive stand point in the vain hope that it would prove my ability to be consistent.

On my journey home I thought some more about the conversation. How could this simple statement have made me feel so uncomfortable? What was the real truth behind it all?
I struggled to find an answer that would satisfy me and justify it all. It was then it dawned on me what the problem was. The statement hurt because it was true (there I have said it, it was true) but I also realised that that in itself was not the problem the real problem lay in the fact that I was berating myself about it and therefore when challenged (even if that was a perceived challenge) I couldn’t defend my position and I desperately wanted to.

Living with mr lupus is unpredictable and often to the outside world this may seem like inconsistency but I know that is not the real story. So today I have decided to stop trying to do all of the things in the same way as I once did (let’s face it there are days when I simply can’t!) presenting a false picture to people around me (there are obviously very little benefits in that) and instead to admit that from time to time there may be limitations to what I can do but realise that doesn’t actually detract from who I am.

From this new vantage point, rather than feeling disempowered, it is very empowering because for the first time in a very long time, I can actually be honest and admit to myself and to others when things are not quite right and the great thing is that way I will never be ‘inconsistent’ again.

Thursday, April 17, 2008

Does it matter when I start my day?

Good morning or should I say afternoon. I am not really sure which becasue it still feels like my morning but the clock is telling me other wise.

Where does the time go.

It's taken me this long to get myself out of bed and I still haven't had my shower or put any clothes on. It feels as though by the time I get around to it all it will be time to go to bed.

These are thoughts that often patrol the corridors of my mind from day to day, which often means that I don't bother to get dressed at all, well what's the point if I am soon going to bed?

This is definitley not my mindset (I'm such a dynamic woman). It's one I seem to have acquired from mr lupus who really will use any weapon at his disposal to prevent me from moving forward and triumphing.So today even though it may be a rather late time to be starting the day I am going to have a shower, get dressed and go out.

I do hope you will join me!

Wednesday, April 16, 2008


After posting to the blog yesterday I felt compelled to gird my loins (I just love the way that sounds, not sure exactly what it means but it sounds great) get out of bed and do something different so yesterday was a vertical day. It's probably not good practice to use language you do not fully understand so hold on for me whilst I go and look it up.

lupus pause!

Okay, I'm back. To gird your loins (if you didn’t know it already) means preparing to do something difficult or dangerous. Well that's definitely the truth so I challenge you today to gird your loins and do something you didn't think you could or push your boundaries a little. You might end up tired and exhausted but you would also have done something and who knows you might even feel better for it and let’s face it you were probably going to feel tired and exhausted anyway.

All that talk of pushing and girding sounds quite exhausting so if you don't mind I think I am going to sit this one out, well I was pretty active and empowered yesterday :-) so now it’s your turn. Today will be my duvet day at the horizontal club.

Today I'd like to talk about the things we say to other people. I’ve decided to wage war against those people who ask how are you? Without really wanting an answer or even caring what that answer is and instead of continuing with those over used platitudes like I'm okay, I'm fine of some other lie, I am going to tell them the truth (well they do say the truth will set you free) whatever that may be at the time.

I am going to look out for me and my well being rather than making everyone else feel good because I am sure it can’t be good to keep the hurt and the pain all to myself so I’m going to share. Okay I admit it, I do have an ulterior motive I simply think it is time to do some spring cleaning and clear some clutter from my life but also to help cleanse those individuals (you know who you are) so that they can use our time together and their time with others more productively.

My mission is simply to get people to ask only the questions they want answers to and who knows I might actually make some really connections along the way.

By the way do you know what FINE means? Feeling, Insecure, Neurotic and Emotional. So maybe I am telling the truth when I politely answer I’m fine.

Tuesday, April 15, 2008

The power of spinach.

I wrote this article this mornng and just had to share it with you. Enjoy and think of what your spinach is. Read on and that statement will make perfect sense honest!

I wish I could say that I was away on some exotic holiday sipping cocktails on the beach being massaged by the sunshine and the tropical breeze, instead I have to admit to being lost in the lupus fog.

In another battle with the infamous mr lupus he threw a punch that left me winded and on the canvas and whilst I struggled to get to my feet the bell rang to signal the end of round one. I dragged myself back to my corner where my supporters worked hard to revive me and to remind me that whilst that was not a good round the fight was not over and I still had a lot more in me to come back and win. I don’t know if it was the blows to the head or my now blurred vision that did it but my hearing and sight were affected and whilst I could hear their words and could see their lips moving I could make no real connection with what was being said and their real meaning was lost on me and even after the bell had been rung for the next round to begin I just sat there as if super glued to the spot.

Round after round the effects of round one kept coming back to haunt me and the world around me seemed to get darker and darker and to make matters worst the arrogance and smugness of mr lupus burned down on my back causing me even more discomfort and pain. Was this the end of the valiant fighter, the woman who believed that through God’s grace and mercy she could fight anything mr lupus had to throw her way? Was I lost in the darkness forever? I began to think so, I didn’t have the energy or strength anymore and I didn’t know where or how to get it back, I felt despondent, this encourager and motivator was deflated the wind had been forcibly removed from my sails and I was stuck.

It was then it happened, mr lupus began to get complacent and as a gap in the darkness began to appear it created a space for an unknown light to shine through and give me just enough space to begin to breathe again and as this began to happen a form of clarity that I had not known before came to my mind.

I remembered seeing Popeye the cartoon as a child where in times of crisis and attack he would reach for his trusted tin of spinach. I never understood the significance of the spinach before but now I could see its true value and power and what was even better was that I remembered my own tin of spinach stored in the back of the cupboard. Why had I not thought about this before? (I think it was probably because I don’t actually like spinach so was unable to look beyond that to appreciate its worth but that was then) as I struggled feeling my way through the darkness to get to the cupboard I noticed a renewed pep in my step, a lightening of the heavy weight that had been keeping me down and all that before opening the can.

I reached for the spinach and opened the can and tilted my head to the heavens so that it would have an easy ride down my throat. As I felt the coolness of the substance in my throat I began to understood why Popeye needed spinach to feel stronger and more powerful. It was because through the spinach he was no longer operating in his strength alone. He had a greater power backing him up and supporting him. I too had that power but it was only now that I was accessing it. Immediately after downing my can of spinach I searched for pen and paper, I had to write. I allowed the pen to flow and this is what I wrote.

My child you are not alone, I have come as a light into the world, that whosoever believes on me should not live in darkness. Know that my grace is sufficient for you: for my strength is made perfect in your weakness. When times of trouble come (and they will) acknowledge your infirmities in the safe knowledge that the power of Christ will rest upon you. Remember that although you may feel you are troubled on every side, you are not distressed; you maybe perplexed, but not in despair; persecuted, but not forsaken; cast down, but not destroyed I have given you the spirit of power, love and a sound mind and I love you just as you are.(Taken from John 12:46, 2 Corinthians 12: 9, John 3:16, 2 Corinthians 4:8-10, 2 Tim 1:7)

I never realised that spinach could be so good. I read the words I had written over and over again and realised that today was a new day, fresh with no mistakes and I could take on the might of mr lupus because with my army backing me up I was going to win!

My spinach is The Bible and God but that may not be what it is for you so what's your spinach, the thing that is going to give you renewed strength and power?

Monday, April 14, 2008

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?