I made it through!

Image by Getty Images via DaylifeWell there we have it another Christmas over. Was it as painful for you as it was for me? I realised that the Christmas spirit was lacking when the best Christmas present I received was to not spend it in a bed in Lewisham hospital.

I am, however, feeling very proud of myself particularly as it really was touch and go but I have decided to have a constructive approach to the hospital thing and not let mr lupus force my hand.

The lastest round of mr lupus and his friends antics has left me itching my arms, legs and back and my tummy has just joined in and just in case that wasn't exciting enough I have started to develop red rashes in the places where I have been scratching that are not going away. It's just as well that Red is my favourite colour :-)

I realise that even in my abnormal world this is not normal and that there just might be something going on that I should be aware of. I've been to my GP twice in 10 days and have successfully managed to add a couple of new pills to my medicine cabinet, but now realise that I need the help of my Rheumatologist (I never thought I would willingly say that) so I am making it a point of popping along for a chat tomorrow.

The last few weeks have been an almighty roller coaster ride with most of it that belly turning, head blasting feeling and I am praying for some steady, solid ground.

In my usual upbeat, positive style I can usually find something affirming in all of this, something to hold on to but I think 'positive thinking' has been suspended for the holidays.

I look forward to normal service being resumed soon!

I'm afraid!

Image via WikipediaAfter another long day of lying on the settee watching reruns of reruns of my old favourite Diagnosis Murder I thought about it and realised that the most distinguished emotion in recent times have been that of fear.

In fact, I am scared of quite a few things. Things which under normal (although I'm no longer sure what is normal) circumstances would be perfectly easy to deal with today somehow seem really enormous and hard to cope with. At first I couldn't understand where this was all coming from and then I realised that it's another mr lupus tactic. he has been whispering 'lovingly' in my ears embellishing things and making them seem real.

he really has developed a knack of making things that aren't seem as though they are and because he's been so good at it I've really started to believe that what he is saying is true.

I am afraid that:

• I will have to spend Christmas in hospital
• I am really sick
• This is it and life will never get any better
• If I have to depend on me to get through this I will fail
• No one understands
• No one cares
• I am not good enough

In the absence of more positive rhetoric all of this becomes plausible and true. But now that I have written it down and shared my thoughts with you I am beginning to see the holes in these statements. And as they start to fall apart I realise that mr lupus is not a man of substance and the same energy I am using in 'fear' I could redirect to faith afterall both are about believing in something you cannot see.

I now choose to believe:

• I will have a healthy Christmas
  
• I am well
• Today is a new beginning leading to brighter and healthier tomorrows
  
• I am strong enough to make it through
  
• My friends and family care and understand me
  
• I am good enough for whatever I need

Bring it on mr lupus, I know your game.

Stop the world I want to get off!

No seriously, stop the world I want to get off!

I feel as though no one is listening to me. Why does the world keep moving? Okay maybe that's just a gentle reminder that horizontal is so much better than vertical.

I know that it's the Christmas season but does mr lupus really have to invite his friends over for a party and do they have to make so much noise. There has to be something terribly wrong with that. I'm currently battling 'a virus' (isn't that a catch all for not sure what's wrong but take these tablets), have some serious mobility issues and my whole body hurts and that doesn't take into consideration high blood pressure, and blood clotting issues.

As you can imagine I am a little the worst for wear, with my body only answering to small very easy to do commands.

I'm back on the settee and back infront of the TV not my favourite place but definitely a familiar one, only problem is TV really is BAD. Isn't there a law against continually repeating programmes? There should be. Maybe I could use my time wisely and start a petition or create a lobby group. Okay enough of that, just the thought of it all makes me feel 'tired' who I am kidding I don't have enough energy to get up and get to the kitchen let alone anything else so strenuous :-)

But the great news is I've lost weight and am hoping that soon I will be able to celebrate that fact.

mr lupus goes travelling

mr lupus is truly international. It actually dosen't matter where in the worl you are I mean I got on a plan and travelled thousands of miles to get away from him only to find that as I got up to get off the plane there he was. he now has almost as many stamps in his passport as I do and you'd think seeing as I didn't object to him travelling with me he could at least spend his time enjoying the sites and leave me well alone. No of course not he just sees it as another opportunity to smother me with his love and for me just another opportunity to 'fake it' after all I'm on holiday so of course I am well!

I have learnt that whilst on holiday there are things I am willing to do, and boundaries I am willing to push which if I was at home would have left me laid up in bed with my feet in the air wondering why did I think I could do that. Thank God for holiday air - this has to be what they meant when they invented vacation time - it gives you more feistyness.

As I dodge the rays of sunshine, I am sure that I read somewhere the only place to get vitamin D is from the sun, I can't help but wonder about the consequences of my actions. What price will I have to pay for this gay abandon of all that is medically sensible. When the shore changes to concrete, the sun changes to icy winds and the wolf whistles change to icy stares what will be demanded of me?

Well as that is not today, I'm just gonna push those boundaries a little further and challenge mr lupus to tackle me as I relax away from the sun of course on the fine sandy beach, ipod in my ear and a fruit cocktail at hand.

There is no help in the kitchen?

Well I did get up and I did go to the kitchen and did it help? Of course not one of my challenges is about food so why I thought the kitchen would be a good place to find light in my present darkness I will never know. I wonder if this was one of the things that mr lupus was whispering in my ears?

So what actually happened?
I got up, went into the kitchen, opened the fridge and found some things begging to be rescued so of course I did the dutiful thing and put them out of their misery. Having a momentous task under my belt I then I thought about food as I opened the cupboards I realised that food shopping was not one of my favourite past times so there was none. So I did what any self-respecting woman living with mr lupus would do I went back to bed and stayed there for the next 36 hours.

Did this help?
I’m not sure, but it definitely prevented me from having to worry about what to do next. I was going to stay there today but having realised (a midnight revelation I think) that it’s my mind that is in trouble so that is what I have chosen to work on today. I think I am in need of a mind detox but obviously I can’t take it out and give it a good wash so I am just going to have to find another way.

What does that mean?
Well I am going to start with the conversations I have with myself and living on my own I have a lot of those intimate moments which up until now I thought were great but now I am beginning to wonder. Anyway rather than psychoanalyze the moment I have decided to write myself some positive affirmations to remind me just how great I am just the way I am on the road to where I want to get to.

Try it yourself.
What things are you saying to yourself? What could you be saying instead?

Talking with the enemy!

I know that I don’t usually use the word suffering so please excuse me, as that seems to be the only word that almost conveys how I am feeling.

Today is one of those dark grey days – Miserable Monday- situated somewhere between Solemn Sunday and Fabulous Friday (well I have to hold on to some kind of hope) and it really doesn’t help to look out of the window onto a dull uninspiring summer day in July. Okay I live in London so I should be used to it, Well today I am finding it hard to feel any joy in being alive, my house is a mess, I’m still in my PJs and it’s almost three o’clock and I haven’t had anything to eat. So I guess it would be okay to say I am not feeling too great today.

Today is one of those days when I would be quite happy to be here on my lonesome, but no mr lupus won’t take a hint and leave me alone, he has to stay real close just to make sure I won’t forget him. How on earth am I going to do that, it’s not like he is forgettable. He obviously hasn’t read the rules of relationship? A girl needs to have her space!

About space, I’d love to just check myself into a place where he couldn’t find me. Somewhere that I don’t have to think about things; where all my needs are taken care of and I don’t have a care in the world. That would be heavenly. My only problem is that now as I think about it instead of basking in visions of 5 star luxury all I can see is a white room padded in style with a locked door and someone else holding the key.

Oops, I think this grey Monday has turned into black Monday! I’m clearly moving in the wrong direction but I’m still moving so that’s okay right?

I think I know what the root cause is although I have been going through the motions of normality I’ve been living a lie and this is the time and the space to let it out into the open.
Lately I’ve had little sleep and little nourishment (I understand the importance of food and water but not quite worked out how to use it to my benefit) and still ‘had’ to maintain a brave face on it all. I think I have become delusional I have started to see mr lupus as a friend, madness I know but he is always there with a listening ear, a helping hand and a shoulder to cry on, he understands my pain, my anguish and my frustration in a way no one else can (well he either causes or triggers it)

But clearly hanging out with the wrong company does nothing to help lift the spirits. Talking of spirits I’m glad I don’t drink because this really would be a great time to drown my sorrows in a bottle. I think intervention from another Spirit would be a better answer.

So what’s a girl to do? (That always sounds better than what’s a woman to do!) Well I’ve decided on a couple of things (two is all I can confidently manage right now) one is I am going to get up and go downstairs and the next one is I am going to go into the kitchen. What will happen next is anyone’s guess and we’ll just have to wait to find out.

A lighter life!

I just came across a magazine in my pile of things to read when I am able to focus long enough for it to make any sense called ‘Lighter Life’. The magazine relates to a diet where you are quite literally starved for months on end to enable you to loose stones in a short space of time. Okay that’s not the publicity information, they actually have a more attractive way of explaining it all and provide supplements and nutrients to keep you going and I know people who have been on it and it has worked wonders for them.

I have to be honest I have considered it myself and as I don’t really eat very much at present (work in progress) I wouldn’t really miss the food side of things but the weekly price is a bit hefty on my meagre salary (oops I forgot I don’t actually have a salary) but the title of the magazine resonated deeply with me and I realised that that’s what I want for Christmas, no not a diet, a lighter life!

A lighter life!
Life seems to get heavier on a daily basis and I don’t know whether mr lupus has been putting on weight which would explain my back pain and why it feels as though I am carrying such a heavy load or whether it is my perspective on things which is causing things to feel or appear heavy. I mean when I have happy thoughts (few and far between) are they happy because something exciting is happening in my life or am I choosing to be happy? I am a firm believer that what we perceive we manifest into our lives but what if you add mr lupus to the equation does the same apply? I don’t know, but I also think that this is a distraction tactic by mr lupus as the more I ponder on the solution to this problem the heavier life becomes and the further I move from my true mission and purpose in life.

My decision
I’ve made a decision I am going to worry less about the why and the how and dedicate myself to the what and the when so I ask you to join me.

What have I learnt?
You cannot always understand why things are happening nor have enough clarity to know how you can make it different but you can always make a decision about taking action and decide on when you are going to take that action. So for me I have things I want to do I am going to break them down into baby steps and decide on what needs to be done and then decide on when I am going to do it and not put pressure on myself believing that there will be a day when the why and how will make more sense.

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?