Monday, March 30, 2009

A stay in hospital has its good points!

As a single woman living alone, there are very few browny points when mr lupus comes to call so much so that I have to admit that my recent stay in hospital highlighted just what I have been missing (sad but true). Sitting alone on the settee, comforted by 24hr TV I realised that being in hospital, although it meant you were sick and liberty impaired also brought some perks:

  • Three meals a day. Okay there was no cordon bleur chef but it was hot and hand delivered
  • Fresh linen every morning
  • Drugs. You have 24hr access. Not that I'm a drug adddict (although mr lupus is working hard to make me that way) but it could be a perk
  • Clean clothes everyday. Okay the hospital fashion label may not be the best for your street cred but you're not going anywhere.
  • Transport to and from appointments. A very nice man wheeled me to my lung scan and inspite of looking a little the worst for wear he found me attractive.
  • A choice of being with people or being on your own in your own private space. Well curtains drawn around the bed is private isn't it)
  • Room service. At the touch of a button you have access to a team of people who are there to serve you.
When put like that maybe being in hospital is not that bad!

Okay I'm not advocating more stays in hospital just highlighting some of the benefits just in case you or I find ourselves there.

Here's to a pain free and hospital restricted 2009.

Tuesday, March 24, 2009

Surely I must be up or some kind of award!

Before the end of February I had been to casualty three times, visited my GP twice, met up with my rheumatologist and spent six days in hospital. I don’t know about you but if I had to schedule those times in my diary I wouldn’t have been able to do it. Not that I am in a competition with you or anything like that but I challenge you to beat that.

I wonder if there is a Guiness Book of Records opportunity here. Now don't get me wrong it's not that I am excited about this 'achievement' it's just that I believe that we need to make use of what we have in our hands. There has to be some benefits in it :-)

Apparently (just in case you didn't know) mr lupus is active and he seems to have plans!

I am grateful, however, that this month has so far been a quiet one apart from the bald patches and the biopsy (but that’s another story)

I think that I am still recovering from the lupus noise of previous months. But the great thing is the sun is shinning and it’s a wonderful day particularly as I have prised myself free from the settee and inspite of mr lupus chatter I’ve made it out of the house and into the real world where there are people around and he has to keep himself in check.

mr lupus eat your heart out because today I win!

Monday, March 16, 2009

I understand the power of a shower!

The white of the sides were dazzling and the water that moved between them was at first warm and soothing but then before she knew it, it was cold and uninviting and just as she thought it could not get worst she found herself in an awkward and uncomfortable situation and the stark reality hit her, she was alone and she couldn’t get out….

If this was the opening paragraph to a best selling thriller novel it would have you gripped and ready to read whatever came next. Unfortunately this is not the case it is the story of the day I decided to take a long soak in the bath and found that the combination of inflammation and reduced power meant that try as I might, I couldn’t get out. mr lupus had me in his grip and there was nothing I could do about it.

Armed only with a telephone, an iPod and my sense of humour, I realised that I would simply have to wait it out. mr lupus would have to let go of his grip eventually wouldn’t he?
Of course he would!

After what seemed like forever and several phone calls later I was finally able to wrestle myself out of his grip okay perhaps not wrestle exactly just get onto my knees and push myself to my feet and get myself out of the bath vowing to never return. Know I really understand the power of a shower!

I did however learn some lessons along the way:
  • Let the water out first, an empty bath is so much easier to manoeuvre in.

  • When mr lupus is on the attack and you are home alone having a bath is not the best decision to make.

  • Humour is a powerful weapon. My friend laughed all the way through my desperate phone call to her but fortunately for her I was laughing too.

  • Faith and hope are great friends to have along the way. I believed that I was going to get out…eventually.
mr lupus is really upping his game so I simply need to up my because I cannot let him win.

Tuesday, March 10, 2009

I've got lupus!

Okay that may not be a startling revelation as I have now been diagnosed with lupus since 2001 but today, in this place, right now I know that I have lupus and no amount of reframing and thinking positively is going to change this moment right now (the next moment will of course be different) and I have to admit that this is really difficult to get my head around.

As the harsh reality that 'de nile' is a river in Egypt (that joke is so much better when you say it) hits me it feels like being stuck in quick sand (not that I have ever been in quick sand, but I have seen the movies) where the more you wriggle the deeper you sink. I am sure that those are words from a song, hold on for a moment I'll check (Don't you just love the power of the internet). I was right, the words are from UB40 and Guilty. I bet you are happier now that you know that)

Where was I, oh yes, 'de nile' There is something so different from having mr lupus display random acts of 'kindness' to knowing that you are tied to him 24 hours a day 7 days a week. It'a bit like having a partner and you suddenly get to see his true colours and realise that you really don't like them.

lupus like any other label, not just illness, has a way of defining you (if you let it of course) and becomes the lens through which you see the world. I don't mind sharing with you how I have been feeling and a lesson that I learnt recently.

My fertile imagination had created a whole new world in my head, a world where mr lupus was king and living a rich and opulent lifestyle and I was his reluctant servant.

I could only see the things I couldn't do. I couldn't run, concentrate for long periods of time, walk long distances, sweep down the stairs, run the marathon etc. The last one jolted me into reality I had never wanted to run the marathon so the fact that I currently could not (and believe me I couldn't) really shouldn't have been a problem but there I was caught up in the web of his deceit and lies.

he was working overtime to plant serious doubts and exploit weaknesses in my mind and believe me he is good, he could win awards for his efforts.

I found that my value was linked to his antics and the harder he worked to challenge me the lower the price of shares in me became with no obvious way out of the slump.

And that is when it happened (well you know I couldn't stay there for too long). Like a bolt of lightening (well I needed something to rise out of the slump) out of the blue I had a brain wave (great to know that that part of me was unaffected by mr lupus' antics) all this focusing on the stuff that I couldn't do really was getting me nowhere and quickly.

I needed to find a lifeline and at that moment, I knew exactly what I needed to do. I simply needed to focus on all the things I could do. (Interesting how lying on the settee and flicking the channels suddenly becomes a skill.) and ask for help with the things I couldn’t. Well that last part is still a work in progress but at least I am on the road and what a great opportunity to learn a new skill.

Monday, March 09, 2009

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!

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Swollen Fingers!

No, that is not the name of a new rock band, (wasn't there a band called Stiff Little Fingers or something similar) although I am sure it would go down a treat. I can see it now, a music venue full of screaming fans all ready for the band to perform their latest offering. 'No Grip' oops, there I go getting away where was I oh yes mr lupus.

So what exactly is Swollen Fingers?
It is in fact the new game mr lupus is playing with me and although it now seems to be a daily routine, I have no idea what the rules are or how exactly I am supposed to play it.

I tried to be really cool and sophisticated about it all allowing mr lupus to play his little game afterall I'm a big girl and I'm not phased by that kind of thing.

I've noticed one of the things about mr lupus is that when he is ready he becomes 'he who would not be ignored' and he continued to play his game until I had no choice but to take notice of him. It was then that I began to fully appreciate the role the third finger on my right hand played in my life. When last have you stopped to give it any kind of consideration?

Until that point, I never realised that finger was actually a star player, quietly bringing up the rear without conversation or complaint doind and supporting.

I am not ashamed to say I have found a new love and appreciation for my fingers and whilst there is no significant other in my life they are the current object for my affection.

So you see mr lupus I can still see the benefits in the challenges you throw my way.