Sleeping with a friend!

It was 6am and as the sunlight streamed through the window it created a silver reflection on his coat and as I turned to face him a smile came across my face. It wasn’t planned, we didn’t set out to sleep together but Mac had become such an integral part of my life that this was probably the next logical step and the great thing was that the morning after I was still glowing and happy to have woken up with him beside me...

Is this another instalment from my steamy debut novel? Maybe it is, but for now it’s simply the fact that I went to sleep with Mr Mac, my new macbook pro laptop, sad I know, but it just happened honest!

It got me thinking, that when sleep (at night) is a challenge, which it has been for me for a long time, we should be able to call in the sleep patrol and get someone to come and lie down with us until we fall asleep. I am aware that this may sound bizarre to you but some of the best ideas and inventions seemed wacky to start with.

It works
I have first hand experience of how this could work because I had a friend, whose name I can’t remember, but he was obviously a good friend because when my mother died and I couldn’t sleep he would come over and lie on top of the bed until I fell asleep and then he would let himself out and he would do that two or three times a week. I’ve just realised just how nice that was for someone to do that for me. There is probably someone who is willing to do the same for you. So if you have a problem with sleep and have a good friend, partner, husband, wife etc. that can help you out give it a go and let me know how it turned out.

If you are the guy who helped me out 12 years ago, you know him or would like to offer your services please get in touch I need you!!

I hope you can dance!

I was sorting through my computer trying to make sense of all of the stuff I have on it and I cam across the following quote and poem and just wanted to share it. It all seemed apt in relation to me, my life, mr lupus and the path I am desperately trying to carve out for myself. It is also exactly what I wish for you on your journey.

Remember your challenge with mr lupus et al. does not define who you are, it simply provides you with a kick up the backside to be more of who you are. We have all heard stories of people who have had to face enormous obstacles and challenges but somehow still manage to rise up, make a difference and enjoy the life they have. What makes them different, is it some supernatural gift, it might be but it is also the fact that they chose to be themselves warts and all. They chose to live in the moment and make the most of the cards they have been dealt.

You can do it too!

"I do not allow myself to be overcome by hopelessness, no matter how tough the situation. I believe that if you just do your little bit without thinking of the bigness of what you stand against, if you turn to the enlargement of your own capacities, just that in itself creates new potential." Vandana Shiva, Activist and Author.

I hope you can dance!

I hope you never lose your sense of wonder

You get your fill to eat but always keep that hunger

May you never take one single breath for granted

God forbid love ever leave you empty-handed

I hope you still feel small when you stand beside the ocean

Whenever one door closes I hope one more opens

Promise me that you’ll give faith a fighting chance

And when you get the choice to sit it out or dance

I hope you dance…I hope you dance

I hope you never fear those mountains in the distance

Never settle for the path of least resistance

Livin’ might mean takin’ chances but they’re worth takin’

Loving’ might be a mistake but it’s worth makin’

Don’t let some *-bent heart leave you bitter

When you come close to sellin’ out reconsider

Give the heavens above more than just a passing glance

And when you get the choice to sit it out or dance

I hope you dance…I hope you dance

So the question is shall we dance?

Yesterday was a great day!

Yes you heard me right I said great and all the while with mr lupus biting at my heels. I know the weather was lousy but I set myself one task (just the one) and I managed to achieve it and more, so I am taking time out to celebrate which sounds so much better than saying I’m exhausted and need to lie down.

For all of us who have the long to do list I am in favour of scrapping it and setting one major daily task (if you are feeling adventurous try two) and then diligently going about achieving that task and when you’ve done it, you have the choice of either standing back and admiring the achievement or starting another task. I’m all for admiring a job well done myself and think having only one main thing to do each day is the productive way to go.

So you are probably wondering what was that one thing that has got Carole so excited and left her wanting to shout it loudly from the rafters.

Well this is it.
I had a candlelit, sweet smelling, bubble bath with soft music, piped into the bathroom through my Ipod. This may sound like a very simple task but let me tell you it wasn’t. I had to:

• Navigate my way through the bathroom (It resembled a scene from Hansel and Gretel with items like the bread crumbs left lying around so that they could find their way home)
• Create an environment that was conducive to my pampering session (do you know how long it takes to get tiles shining again?)
• Get into the bath to luxuriate (I like that word) in the sweet smelling bubbles as they lovingly caressed my body basking in the ambience created by the candles.

And then came the task I hadn’t bargained for.
Whilst lounging in the bath I thought about Cleopatra bathing in asses’ milk and could picture myself being pampered on a daily basis. I felt like royalty and for a while I had forgotten all about mr lupus. That was until it was time to get out of the bath.

How could I have forgotten (that memory thing again) the challenges of getting out of the bath, that’s what the bath aids are for. As I tried time and time again to get out of the bath, praying for strength in my arms and legs I couldn’t help but laugh so what if it was a challenge I had achieved my task for the day.

I am pleased to tell you I am not writing this from the bath!!

Challenge yourself
Set yourself one thing to do today and take action to achieve it.

Yes you can!

I need your help!

I hover in front of my living room curtains, but my brain refuses to give the order to my arms to open the curtains and let the light in. mr lupus has tricked it into believing that staying in the dark is the safest place to be, but as the sunshine knocks lovingly at my curtains I instinctively know that this is not true but the chains that bind me, although invisible to the naked eye, hold me tightly bound and I am unable to translate my positive thoughts into any meaningful action, so I am enlisting your support to help release me from these chain. Don't worry I am not asking you to be my Indiana Jones just to encourage me to keep moving forward. Just knowing that you are listening to me already seems to have loosened the chains and provided me with a little more clarity of thought.  Thank you I know what I need to do.

• Want to open the curtains - okay this is a tough one after all what difference does it make and couldn't that energy be better spent else where? I've thought about it opening the curtains will let the light in and sitting in the darkness only the act of letting light in (however little) will make the difference. Okay I really want to open the curtains.
• Know why I want to open the curtains - Well this one is already taken care of.
  
• Have the ability to open the curtains - I know I can do it. I have both the ability and the evidence to back it up.
  
• Get support so that I know I am not alone - I have reached out to you and I already feel the warmth of your support.
  
• Take a deep breath - Breathing is one of the most powerful weapons at our disposal and one we do not use effectively or often enough. I know breathing comes naturally that's not what I am referring to I am talking about those deep breathes that help to centre us and get us focused/refocused.  
  
• Take Action - Now this is the big one. Hold on a moment I am going to take action whilst you are still here. I've done it! and the room is so much brighter, a much nicer place to be and further more I am free from the chains.

How could I have forgotten this feeling so easily? I realise when I do not have a vision or image of what I want or how I want things to be any sign of challenge (and we know about mr lupus and his challenges) I'm stuck and the lights automatically go out but I have discovered that I do have access to the light switch I just need to trust, believe and ask for help and then take the necessary action to let the light back into my life.

Thank you for your support.

Now whilst the steps outlined are about me and my curtains, they can equally be applied to anyone and any situation so if you have a specific (mr lupus has a lot of non specific challenges) challenge identify the steps you can take to make the difference in your life and live a more freer life.

Remember it is you who makes the difference in your life!

The power of a detox!

I can now officially add radio to my long list of media appearances, talking about the subject near and dear to both our hearts 'mr lupus' (okay maybe long is not quite the right term but I have now appeared on both TV and radio)

I'm back home from sharing the air waves with the esteemed Eddie Nestor (2007 speech broadcaster of the year) Well my mother always said if I was going to do something I should aim for the top. I just never realised the journey to the top was going to be such an uphill ride.

I fancy myself as a bit of a radio personality, after all I do have the gift of words and I am convinced I was born to talk for a living so watch this space. Anyway back to my moments of fame. We (Already I am taking this broadcaster thing seriously) were joined by Angie Davidson from St. Thomas' Lupus Trust and talked openly about mr lupus, his antics and the affect his presence has on us.

Eddie asked me a poignant question how does (mr) lupus affect me on a daily basis, a question I thought I knew the answer to but on reflection I'm not sure I have ever articulated it honestly before. In fact just thinking about it makes me feel a little uneasy as I realise just how much in denial I have been about so many lupus things in my life. I didn’t want people to see me differently, but the truth is I am different and difference does not have to mean negative. I think I have mistaken the 'glass is always half full' thinking with if you ignore it somehow it will all magically go away.

I am tired and disappointed or more appropriately 'pissed' off at the way things are and the way they have turned out but until I face mr lupus head on I am going to continue moving in ineffective circles.

So today I am going to come clean by writing down exactly how all of this is affecting me. I know this may well change tomorrow but my concern is less about tomorrow and more about right here and right now. My feelings are quite strong and I am not yet ready to share them with you so please bear with me as I go through my lupus detox

Thank you Eddie and Angie for pushing me to face my demons.


Please join me!
Now is also the time for you to come clean. Get your pen and paper out and write down exactly how you are feeling, what/who annoys you, makes you feel angry and how this is all affecting you. Don’t be afraid, let it all out. Allow your words to be the healing balm reaching the parts that steroids never could.

Don’t let mr lupus off the hook. When you are satisfied with your outpouring read it over in the knowing that by releasing it all you have taken another major step on the road to wellness (the other step was reading this blog) and then burn it

Before mr lupus gets too complacent with all of the attention write him a ‘Dear John’ letter telling him how you feel and what his presence does to you and why you will put up with it all anymore.

Remember a detox always gets ugly as it clears away the debris and the crap before giving way to a cleaner, decluttered and you.

A booty call!

I know it's unusual for me to post twice in one day but I just had to share this with you I am meeting up with a man later this evening. Yes you heard it a man! In fact he is sending a car to pick me up at 11pm (GMT) for us to link up around midnight. I'm really quite excited, I haven't seen him in a while and it will be great to be in his company again. I think I actually have an extra pep in my step which has to be good.

I haven't decided on what I am going to where yet but I know it will have to be something that makes a statement (and fits so that narrows it down a bit). I wonder if I have time to buy something new? Isn't that what people do when they have a date? My friend has even referred to it as my booty call.

Sounds good to me!

I have to come clean
Although I would love to say that this is a clandestine meet up with a new beau but it's not true. I am being picked up to appear on a radio show, yes I am going to represent and let my star shine I promise to do you proud. I am talking about our not so favourite subject mr lupus so if you are awake you can tune in please do so. If you are in the UK it is BBC London 94.9fm or you can listen online www.bbc.co.uk/london

It's chronic!

My doctor says this depression is chronic so there you have it another label to add to my long list of symptoms and conditions. I read my doctor’s notes on me once, never again, they have such a way with words and with one small pen stroke they change your life forever. Sure I am having a hard time but does it really need to be defined in such a debilitating way?

I met a friend for drinks and told them of my doctor’s diagnosis (I am simply buying into this by sharing?) and they asked a simple question what exactly is depression and why are you still smiling? I found that I couldn’t quite explain it and mumbled something but was still unable to convince him that I was actually suffering (I choose this word deliberately) from that condition (perhaps that’s part of the problem)

When I went home I checked into the Depression Alliance www.depressionalliance.org to find out what this label was. This is what they said: the word 'depression' is used to describe everyday feelings of low mood that can affect us all from time to time. Feeling sad or fed up is a normal reaction to experiences that are upsetting, stressful or difficult; those feelings will usually pass.

If you are affected by depression, you are not 'just' sad or upset. You have an illness which means that intense feeling of persistent sadness, helplessness and hopelessness are accompanied by physical effects such as sleeplessness, a loss of energy, or physical aches and pains.

I guess this explains it all or does it? All of these symptoms are also mr lupus antics so and the intensity of it all in the words of my friend are simply mr lupus buying trimmings to make his stay in my house more comfortable for himself. Where does the mr lupus flare and chronic depression meet? (I now know that chronic isn’t something to worry about, it simply means continuing a long time or recurring frequently) I’m not sure but hope is on the horizon, I have been able to find an oasis in the midst of it all, when I can leave my house that is. I find that when I am with other people, or helping someone else through their problems the overwhelming feelings of ‘helplessness’ dissipate. Maybe I simply need to be forced (forcing myself really isn’t working too well currently) to meet and help people or maybe just start taking antidepressants. I’m not sure about that one so watch this space.


What are you doing?
Depression is a condition it is not a way of life unless you choose it to be. What is your oasis the midst of this madness. I challenge you to find or create one. It really makes a difference even if just a small respite from the daily crap. Let me know what you have found that works for you.

I did it!

Yes I did it!

I celebrated my ‘down’ day by going for a ride around the aisles of a large Asda supermarket and I must admit, as strange as I might have looked with my crutch perched to one side and my bright orange handbag and no shopping in the basket in front of me, I didn’t care (isn’t that one of the symptoms of living with mr lupus?) and yes I did enjoy myself.

I happily navigated my way through and around shopper’s legs, small children and other obstacles to enjoy the view, as I travelled down aisle after aisle making my way from dog food aisle to large screen TVs to extra value toilet paper. Supermarkets really do look different when you can only see eye to eye with a tin of baked beans or flavoured (I’m sure that’s the wrong word but what else do you call lavender, lemon or Floral) bottles of bleach.

The great thing about these motorised wheelie things is that you don’t need to have a license to drive them as they only have two gears forward and reverse and a horn to let people know you’re coming and when you’re driving to lighten your mood, what more do you need.

I really didn’t have a supermarket game plan so I simply followed the natural layout of the aisles one by one, reversing when I found elements difficult to navigate and just enjoyed being conspicuous in a place full of people. 

All in all I spent about an hour and a half driving up and down the aisles and although I didn’t fill my basket with anything, no one challenged me and when I parked up my transport and left empty handed, noone asked me any questions. For the moments I spent behind the wheel I felt in control and my relationship with mr lupus didn’t even factor into the equation.

Just what my personalised medical plan ( I put it together myself) ordered. It might not have been the anti-depressants the doctor ordered but it did enough to get me through the rest of the day.

Now all we need to do is work out how we can all do it as I think the one thing that I was missing was a companion, someone to play hide and seek with, first to find the ketcup or other similar supermarket games. Unfortunately they only have two wheelie things so if you are up for it we would have to organise ourselves into teams and do relays.

 Are you up for it?

Better out than in!

It’s a Tuesday morning, the sun is shining, my doctor says I am depressed and I am about to leave the house to deliver a workshop, what more can a woman ask for to challenge her and all in one day?

In spite of or maybe because of all of this, I think I am going to celebrate the day anyway after all it really is a blessing to be seeing another day at all, even if it currently feels like crap. Talking about seeing, mr lupus seems to be playing with my eyes, a bit like now you see me now you don’t, so lots of warnings from my doctor about driving and working heavy machinery oops scratch the last one that is the warning on the medication bottle. Talking about medication my doctor actually got on her knees today to beg me to take anti-depressants that has to be a first even for me I’ve had the hospital ring me to come and pick up my teddy bear (long story), my doctor write me because she hasn’t seen me in a while but never a doctor on her knees.

Just goes to show just how special I really am!

So to mark this auspicious occasion I am going to go to the Asda supermarket and drive myself around in one of those motorised wheel chair things. No I don’t really want to do any shopping just ride around in the chair. I have always wanted to do that. In fact what I should do is organise is a group of people living with lupus or anything else for that matter, to descend on a store (somewhere central of course) and organise races down the isles (if this interests you please let me know). We could probably do it at 2am when many of us who can’t sleep are still searching for things to do to keep us occupied.

Okay enough of my rant for the day. I strangely feel better having got so much off my chest, not well enough to clear that mountain of clothes currently staring menacingly at me however, but enough to get in my car (I will get my eyes tested soon honest!) and drive off into the sunshine for a whiz about in the chair.

I’ll let you know how it all went tomorrow but today promise me that if you have something on your chest or your mind that is annoying you, upsetting you or generally getting in your way and preventing you from enjoying the moment that you will find, (hunt out if your have to) a way to let it out and release it, you will feel much better when you do. Look I'm smiling :-)

Better out than in is my motto.

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/ 

My legs have sent me to Coventry!

Its official my legs have sent me to Coventry. For the whole of yesterday they refused to have any meaningful conversation with me. I tried talking to them, I touched them affectionately, I apologised for treating them badly but they simply refused to pay me any attention. So I sat, lay down, slept, watched meaningless TV all in an effort to keep me occupied whilst in silent relationship with my legs. All whilst trying to be understanding and patiently waiting for my legs to forgive me.

Now 24hrs later, I realise that they really do not forgive easily and I have to take the matter into my own hands. The sun is shining and it’s my late mother’s birthday so I refuse to be kept prisoner by my legs. Today I am in control I tell my legs what to do, they don’t tell me (well that’s the theory I am working on today).

I think I hear a murmur, nothing loud or friendly just a whisper. Oh I think I am being given permission, okay it’s valed in a challenge but I am seeing it as the opening of friendly or at least less hostile negotiations.

I have been given permission to leave the house as long as I use both crutches. Okay I can handle that, after all I am looking at how to get my legs back onside so if this is what I have to do them I am willing to do it (albeit not my first choice).

So as I hobble to the bathroom, I have thoughts of being outside enjoying the fun of the great outdoors.

The power of the Disabled Badge!

I’ve finally found a reason and a purpose for my disabled badge.

I was off to an appointment and the person was running late and seeing as it was nearly lunch time and I still hadn’t had breakfast, I thought I should kill time (why do we use the word kill in respect to time?) let me rephrase that, I thought I would pass the time effectively, so off I went to get some food, which is a major mind shift for me as food generally does not feature anywhere in my thinking. Anyway I parked my car, met someone I went to school with, had a chat, stood up in a queue, got my food and headed back to the car park but I couldn’t remember where I parked the car.

Well everything looked familiar to me and then I remembered why? The disabled spaces were already taken when I arrived in the car park and so I had to park in the first available space. I took a mental note of where I parked the car, which was my first mistake, as I have long since realised that taking mental notes is of no real use to me as when I want to recall that information the play back button no longer works.

So there I was standing in the car park frantically pressing play back (my second mistake) only to find the screen blank. Then I had my second ah ha moment. I realised that it’s not the playback button that’s faulty it’s the record button. The recording device I am using is no longer reliable (I must make a mental note of that) .

It was then that I began to see my disability in a whole new light.

My disabled badge is not about labelling me and any dysfunction it’s a car tracker. If I had found a disabled bay and parked my car, finding the car after my shopping would have be a piece of cake.

It’s all about perspective and so today I have decided to give a greater level of respect to my disabled badge because I know it is there to prevent me from standing in car parks praying that when I turn the next corner my car will be there.

What is in your life that if you changed the way you viewed it could actually be seen in the positive rather than the negative? Remember the glass is always half full even when it is half empty and life really is all about perspective. Think about it, if the Indians had written the cowboys and Indians story we would have had a whole different story!

I just don't care!

I’m up early courtesy of a phone call from a friend to ask the often loaded question “how are you doing today?” Firstly it’s 8am and I’m not awake and secondly I’m living with mr lupus so how would I realy know? I realised that my annoyance with the morning’s interference was not just about it’s inconvenience I mean why would any one who knew me believe that I would be up at that time of the morning and more importantly how could they possibly think I would have anything relevant to say, there was something more.

I don’t think I am very well. I say I don’t think because I can’t quite put my finger on what’s wrong but as I get out the bed I share with ‘stuff’ that I haven’t yet found a place for and I step over things to get to the bathroom I realise that I haven’t tided the house in a while but more disturbingly I don’t seem to care.

I’ve searched the symptoms for lupus and can’t seem to find this as one of the afflictions but I’m sure it should be there as life was never like this pre mr lupus (even though I find it difficult to think that far back) and I find myself increasingly not caring about stuff.

However I have made some progress in the ‘don’t seem to care’ space, I have stopped beating myself up about it (actually now thinking about it that may be just because I don‘t really care), whether it is or it isn’t I am choosing to see this as progress, now all I need is an incentive and a plan. Well I have some people coming to stay in the next 48 hrs so I guess there is nothing like a deadline to get you going.

Now all I need to do is care (or at the very least pretend that I do)!

Is there something that you have been putting off and been avoiding? Let me be your conscience today is your last day of procrastination (there’s no value in it I’ve tried) set yourself a little task, a small step that when taken will bring you nearer to your goal and then reward yourself. That’s it you don’t have to do anything else, unless you want to, until tomorrow.

Let’s hold each other’s hand as we move through the ‘don’t care’ symptom because I am convinced it too shall pass!

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.

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!

Consistency!

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.

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!

I'm FINE!

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.

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?

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…

Awake and alert!

Its 6am on a dark Tuesday morning and my body is wide awake courtesy of the pains in my right leg. So I thought I would use the time wisely and catch up with you as I realise that I haven’t shared with you for a while.

So let’s do a quick check in with what’s been happening in my world.

I’m beginning to finds ways to make disability work for me and as a result my left leg is rejoicing because instead of having to battle with the challenges of the manual gear change it has a new home, a new car and it’s automatic (my right leg is not so happy but that is another story) But I am truly excited none the less because, it does so many really cool things, I travel with the car key in my pocket and the doors open automatically, it starts at the touch of a button, the lights come on when it is dark and the windscreen wipers come on when it is wet. The only problem is I still have to drive it and as I have not been that well I haven’t spent a lot of time in it.

But the thought of it alone refreshes part even steroids cannot reach. It really is the simple things in life that make the difference.

So what am I doing while I am up so bright and early, after all I have no job to go to? Well seeing as it is just us, I’ll share with you. I am on a weeing marathon, yes you heard me right, I am currently weeing for England. I had chemotherapy (cyclophosphomide, my favourite drug) yesterday and I have been getting intimately acquainted with my loo, but I guess that is a new way to detox!

I’m trying to take it all in my stride as by consenting to have chemo means that I am ‘allowed’ to go to the Caribbean for two months. Yes you heard me two months well my motto is have crutches will travel!

Invisible London

It’s official!

I have now joined the ranks of London’s invisible. Yes I have been registered disabled which in the first instance can be seen as quite exciting after all I can now park in a wide variety of places, I have a free bus and train pass, I get free car tax and can travel freely through the congestion charge zone all very exciting indeed. Well it would be if I had the energy or the desire to travel around London; or if London was in the least bit welcoming and I am sure that London is representative of other large cities around the world.

Have you tried traveling on public transport with crutches? By and large people ignore you, no correction try to ignore you. they don’t make eye contact with you which I am now convinced is because they are frightened you might ask them something or whatever you have is contagious. And those that do talk to you are extremely friendly so friendly that they want to know why it is you are on crutches and use it as an opportunity to share with you all they see being wrong with their world.

But as well as all of that there is something about the label ‘disabled’ that stirs up all kinds of emotions in me, it reminds me of all the things I cannot do, I feel less than, not quite right, I don’t fit in. And so now instead of just dealing with mr lupus and all the stuff he brings to the table, I’m having to deal with these emotions too. More emotions than a girl should have to deal with.

So here I sit amongst the invisible many wondering what and where to next. I guess I’ll just wait for the next bus or train to come along and get on it just for the ride!

Thought for the day
Have crutches will travel. Learn to explore the world in spite of your circumstances. You are more than the sum of what is happening in your life.

I'm going to re-invent myself!

The one question that I keep being asked is am I better now?

Good question, but to be perfectly honest with you. I’m not sure, it’s a year and some months since this all began and I am still on the settee watching brain numbing TV (Did you know that there really is a small number of TV programs that are simply regurgitated over and over again, I know because I’ve probably seen them all at least twice).

But I must be better mustn’t I? After all I’ve had lots of drugs pumped through my body; I’ve subjected it to ghastly chemo sessions and been withdrawn from the outside world.

Surely it has to have been worth it!

Well the jury is still out on that one because some days it really doesn’t look so good, but I’ve found a solution. I’ve decided that the best way to handle it is to limit my use of the word better and have chosen to use the word ‘different’ instead, because things really are different.

My legs (the site of the original problem) maybe painful, swollen and rely on crutches to help them move around; mr lupus may still knock on my door daily (some days more forcefully than others) but it’s definitely a different world that I am now living in.

A friend of mine was recently asked how her friend Carole was doing. She knows more than one Carole so she innocently asked which one. Was it Social Worker Carole? Carole from East London? or Lupus Carole? It was then that I realised that I had suddenly become someone else. I was no longer fun loving Carole or professional Carole or even just Carole now I was firmly attached to mr lupus. We are seamlessly joined at the hip and that was how people were now seeing me.

But that’s not how I want to be seen.

So now I am going to reinvent myself, if Madonna can do it (several times) I don’t see any reason why I can’t do it. So armed with the notion that life is in the detail and that little things really do count, I’ve already started my re-invention process by:
Changing the way my Blog looks (I hope you noticed)
No longer sleeping on the settee
Giving myself a manicure
Removing the offending clothes from my wardrobe
Hanging pictures
Giving myself permission to be
Letting go of stuff (still a work in progress)
Inspiring others (I’m doing really well at this one)

That may not seem like much, but believe me in my world it is quite revolutionary. All I need now is some sunshine. Can anyone tell me where the summer is because I’ve looked at my watch and it is well overdue.

Thought for the day
Life is about perspective and you get to chose the perspective!

World Lupus Day

Today all over the world individuals, their families and friends are focusing just a little more on the auto immune disease lupus so I would like to ask you a favour. I know that you have a busy lifestyle so I promise not take up too much of your time.

For those of you who don’t know lupus is a condition whereby the body's immune system goes into overdrive and starts to attack itself. The symptoms are many and varied and the illness seems to mimic other diseases. This gives rise to difficulty in diagnosis and the condition can be overlooked, sometimes for years, unless the GP or consultant is alert to lupus.

As someone living with this condition, it is just as hard to deal with and to understand but I am not asking you for sympathy. I am simply asking that you spare a thought for me and others like me who are challenged on a daily basis by this condition and associated complications.

I can send you an email of a man walking the world for lupus that you can share with your family, friends and colleagues. If you are interested please send me an email d1vine1963@yahoo.co.uk with walking in the subject line.

Thank you your support is much appreciated.

Now that I have come to the end of the road!

Well this is the eve of my last chemo session and as I sit here looking out of the window, I find myself challenged by my chemo knowledge and the effects it is likely to have on me both mentally and physically over the next few days but that seems like the wrong way to spend a bright and sunny afternoon.

So instead I have decided to look back at an email I sent a few days ago. I actually asked for help, yep it’s only taken 11 months and seven chemo sessions to realise that I don’t need to do this alone. (Okay so I am a slow learner) and further more I was specific about what I needed, I have it on good authority that chocolate really is good for you when you have problems with your taste buds. (Who is going to say that my authority is not good?) But what’s even better is that people have just been waiting to help me and now have lots of what I asked for.

But it got me thinking, how many times have we gone it alone, tried to be superman or woman only to be left exhausted and unsatisfied? (Don’t desert me now cos I know that I am not alone) I suspect plenty but now is the time to STOP.

I have had a startling revelation ‘independence’ really is not a good thing to strive for. Just by its definition it means alone and do we really want to be alone? No of course not. The reality is that we are interdependent like the links in a chain, we are whole in ourselves but need other links to make the chain complete. Do you understand what I mean? Even if you don’t, the one thing to remember is reach out and ask for help when you need it as there really are people who want to help you.

I won’t ask you for chocolate but please just spare me and what I am going through a thought.

One size does not fit all

That niggling subject has raised its head again. I know that we’ve talked about it before but it just doesn’t seem to go away.

It’s that size thing again!

Well I can’t help it, due to the changes in my physique, courtesy of the lupus/steroid clan, and the refusal of my wardrobe to play ball with me; this is a subject that is never too far from my thoughts.

But things are changing, okay maybe change is not quite the right word, (more like my focus is now on one part of my anatomy at a time) this time my challenge (sounds so much better than a problem) is my head. No not in my head and it’s not that my head is actually getting any bigger (well at least I don’t think so) it’s just that I am fed up of the mr lupus/chemo baldness as I can no longer ignore the bald patches that seem to illuminate each time I look in the mirror. Have you ever realized just how many things you can see your reflection in even when you have absolutely no interest? Well I can tell you it’s plenty.

I decided not to be defeated by the baldness. So I’d buy myself a hat, a sexy, foxy number that would enhance my new physique (see I’m trying to embrace the me now on the way to the me of tomorrow. Deep huh!)

So there I was crutch and all off on an exciting shopping spree, believing that I had found a solution to my temporary situation (everything is only temporary right?). Great or so I thought but that was only short lived. The wisdom, for want of a better word, of the fashion industry put paid to that, they had failed me once more. How can they possibly believe that this is going to work surely there are people with big heads, small heads and medium sized heads. How can they make hats in one size?

Maybe we need to write to the Queen, our MPs organize a march…because one size definitely does not fit all.

Hospitals are all the same!

It’s been a while since last we spoke, so before I talk about what’s going on for me now let’s play catch up and set the scene for the current state of emotions and challenges. Here goes...

I can now officially say that casualty is the same wherever in the world you are and just to prove my point I thought I’d get on a plane for nine hours and then travel for a further three and a half hours just to check it out. I did get a few days sun, sea and sand as well after all I did travel a long way to be in the Dominican Republic for Christmas and New Year but unknown to me mr lupus decided to tag a long I should have known better to think that a matter of geography was going to separate him from me.

he was behaving himself, (in fact I didn’t even know that he was there) enjoying the sun and paying me very little attention that was until I decided to go and explore the capital Santo Domingo. Well I couldn’t go so far and not visit the oldest city or some of the firsts of the new world could I? (Well apparently I could as you will see later).

Our fist stop was Los Tres Ojos (3i cave) with three serene lagoons of crystalline purity submerged in a deep cave and surrounded by tall (still-growing) stalagmites and lush vegetation. It was then that mr lupus got so very excited (it must have been the view), which wouldn’t have been so bad if there wasn’t all of those stairs. I approached them with caution and almost made it down them when my leg or legs, I’m not sure which gave way and there I was sitting uncomfortably on my bottom but the view of the blue lagoon framed by the stalagmites was breathtaking or was that simply me trying to comprehend what was going on and wondering what to do next. Well I must say the men of the Dominican Republic are very good. Four men gallantly came to my aid. In no time at all I was surrounded by men wanting to rub and generally be of assistance which on another occasion I might have truly appreciated. They were at my disposal to take me up the stairs again but to everyone’s surprise I demanded that they stop so that I could take a picture, well I didn’t want to miss out I’d come a long way.

With five days of my holiday to go I could only think what an interesting end to an already challenging year. My good foot as it once was was now swollen to balloon proportions reminding me that when I break through my pain threshold the shit really hurts. As I sat there dumbfounded all I could think was isn’t this pain supposed to stop sometime soon? This would have almost been comical if this wasn’t me and it didn’t hurt so badly.

Lying in that Spanish medical facility I learnt something new. In the absence of pain killers music is a good soothing aid. Thank God for my ipod and the soothing voice of Lynden David Hall interestingly he was singing ‘Medicine for my pain’. Don’t get me wrong music doesn’t make the pain go away it just provides you with something more pleasant to focus on.

Three men who don’t speak very good English accompanied me to the clinics in search of an x-ray (cleanliness was in question but that’s another story). Still no handsome doctor or nurse for that matter to take my pulse which incidentally seems to have remained pretty calm through all of this, could be worst I guess I could already be in 2006 or it could be the first day of my holiday or… hey I’ve done Chemotherapy, hospital, many trips to casualty, palpitations, pneumonia et al this is bound to be a piece of cake in comparison (well that’s the theory anyway).

I navigated my way through the rest of the holiday in fine Carole style, smiling and joking along the way but there was a moment when I really couldn’t laugh my way through it anymore when I had to stop and acknowledge this is crap and I’ve had enough.

Well that was almost nine weeks and three lots of plaster ago, life is still challenging but walking is much easier so all I can do is live in hope and the belief that one day this will well and truly be behind me.

Cover Girl

I’ve always had the ambition to make the front cover of a magazine. I’m sure with a bit (okay maybe a lot) of airbrushing and touch ups I could hold a striking pose that would make any member of the magazine buying public proud and guess what I’ve achieved it. Who said goal setting didn’t work…..

Okay maybe it wasn’t quite the type of magazine I had envisaged, not the rushing off the shelves type of publication that is a must have in every household but I heard them say somewhere that beggars can’t be choosers so I’m okay with that and besides, I’m confident that I’m not a beggar so I can be as choosy as I like, well almost! But irrespective of it all I still made the front cover (okay I did share it with a bunch of other people but I am clearly visible honest!)

So you are probably dying to know what this publication is and how you can get your eager hands on a copy. Well brace yourself because I have some bad news for you. As much as I understand your desire to see me in my glory, it’s not going to happen but then again if you are really interested then maybe I can start selling on the side, but are you willing to pay the price?

So why can’t you get your personal copy? That’s simple, because it’s priceless (no honestly it’s not sold in shops or anywhere else for that matter) and you have to be part of a special club to be sent your copy. I like that thought I’m simply exclusive.

Okay I’ll come clean I’m on the front cover of the Lupus News & Views quarterly magazine. So llaughing with mr lupus has its plus points after all!

My pearls of wisdom
Although this is not the front page I had envisaged, it shows that things do not always come in the way that you would expect them but it also says you really can achieve anything if only you believe. So start believing in something right now!