Tuesday, May 27, 2008

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!

Wednesday, May 21, 2008

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!

Monday, May 19, 2008

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.

Sunday, May 18, 2008

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.

Thursday, May 15, 2008

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?

Tuesday, May 13, 2008

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.

Sunday, May 11, 2008

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/ 

Tuesday, May 06, 2008

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.

Sunday, May 04, 2008

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!

Friday, May 02, 2008

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!