The power of The Pred!

I'm sorry but I need to start this conversation by singing the praises of prednisolone. Yes you heard me right, I actually have some good things to say about steroids.

I know that Prednisolone has a bad rep and I, for one, have been waving that flag after all it gave me the familiar 'Moon Face', an excess of bodily flesh, euphoric highs and almighty lows but following 'Swollen Fingers; it also gave me a life line.

The very moment prednisolone entered my blood stream, my whole body seemed to jump for joy and get excited. In fact I could almost hear the third finger on my left hand squeal with delight as it recognised the familiar sensation trickle through my veins.

prednisolone actually helped me to feel better and to quite literally regain my grip on things and I have to admit I started to get cocky and I really believed that I had found the weapon I needed to fight mr lupus head to head.

Well I now know that at the first sign of prednisolone, all mr lupus did was withdraw for a little while to regroup and then come back with a vengence.

So there I was left hot (should have been cold but inflammation is a heat thing) and alone having to fend for myself against the evil of mr lupus.

Prednisolone is still on the menu but I will never trust it again because it chose to betray me and didn't live up to its promise!

I guess you could say I don't forgive easily, well I think I've got justification don't you? I've issued myself a challenge and I am going to work hard to achieve it. I will not get moon face and having lost weight I refuse to take it back so whilst it may be knocking vehemently at my door, I'm choosing not to open it!

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!

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.

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!

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/