Wednesday, January 21, 2009

My least favourite place in the world!

I just wanted to tell you about a recent visit to my least favourite place in the world. The reason I am sharing it with you is not because I want to promote it but because whilst it is my least favourite it can sometimes be useful and this is one occasion when this was definitely the case.

I would have let you know earlier but mr lupus was playing with my hands and the experience was such an amazing one that I couldn't really focus on anything else. It was something that I had never felt before (and to be perfectly honest will be quite happy if I never feel it again).

I was also disappointed that I managed to fall at the first hurdle with one of my major 'resolutions' for 2009. Having discovered that the power of asking for what you want is more likely to help you get it (providing you are not being selfish of course) I promised myself that I was going to exercise my right to 'ASK' in 2009 on the belief that the universe and everyone in it is willing to help and answer my call!

And then it happened.
I woke up and realised that things were not quite as they should be. My hands refused to comply, my balance was a bit off and the dreaded pains in my legs were my morning companion. I am not sure whether it was at this point that I thought I should visit 'that place' or whether the effort to squeeze toothpaste or turn on the tap alerted me to the fact that my body was not quite operating as it should.

Now you'd think that all of this would be pretty straight forward, I'm not doing too good, I need some help and I know where to go and get it but due to the 'hand' challenges driving was out of the question, (although it did cross my mind) but still I didn't ask.

I cancelled a workshop that I was doing that day for obvious reasons, made a call to a friend on the same road but on no answer I left a rather jovial message on the machine and carried on with my morning (albeit slowly) as though there was nothing wrong. I got a call back from my friend who had also been called by the person I called to cancel the workshop to check that I had ‘asked’ My friend was appalled that I hadn't 'asked' her to take me to the hospital and quite frankly so was I.

Having gotten over that, I arrived at my least favourite place in style and spent the time entertaining the medical team, well they have a challenging enough days without me adding to it.

I lay around for hours half naked on a gurney and then on the assessment ward, which might have been quite exciting if it wasn’t a public place, I wasn’t in pain and I wasn’t alone (well my friend was with me for most of the time) but I did manage to connect with a patient who softly enquired ‘Did I hear that you had lupus? My sister has lupus can I ask you a few questions?

I put my pain and situation to one side and did my usual encouraging thing, pointers to look out for and ways in which she can help oh and for good measure I gave her my number should she or her sisters ever wish to call. Not bad for an afternoon’s work.

And then they did it!
The Rheumatologist looked at my notes, did her observations, asked me some questions and left me with a handful of white things that she assured me would help. I willingly took them. At this point I probably would have taken anything and in that moment, in that place she was write and I started to feel better.

I learnt the things I cannot do when my hands don’t work and realised that I am not bothered by all of them.
  • Turn on the tap
  • Wipe my bum
  • Squeeze the toothpaste tube
  • Put on my underwear
  • Put my hair in one
  • Open the front door
  • Eat
  • Connect with people online
But more importantly I learnt the importance of 'asking' and I now know that it works, so the next time you need help, support, love, prayer etc. remember that a small word can make a huge difference in your world.

Friday, January 16, 2009

“Hold a true friend with both hands”

That is a wonderful African proverb and although I am not his friend, I'm convinced it is one that mr lupus is taking very seriously.

His latest antics are interesting to say the least. I wake up in the morning and he appears to have been holding my hands between his for the whole night.

I like the idea of a man holding my hands all night, well not just any man, a tall dark handsome, breath taking reflection of God's heart for me kind of man, what a romantic vision! I could dine off that one for a while but alas mr lupus does not fit the bill in anyway shape or form, so let's get back to talking about my hands.

My fingers are swollen and my rings are developing a relationship without me, but I'm still full of hope, keeping driving to a minimum for obvious reasons, but still believing that, whilst it may not be today, it could be tomorrow that my hands resume some kind of normality.

I will otherwise have to resort to some form of defensive action which includes bending, stretching and probably a lot more pain. I'm hoping I won't have to resort to that one.

Saturday, January 10, 2009

There are always consequences!

Today I spent most of the time in my usual horizontal position cuddled by my the settee and comfortably located behind the curtains and away from the outside world. Do you know that after three years of watching Diagnosis Murder I actually found one I hadn't seen before. Amazing I didn't think that was possible, but it just goes to show you that the world really is full of possibilities. You know that this means I will have to continue to watch Diagnosis Murder just in case there are some others I have missed. This gives me a valid reason to keep watching mindless TV (for research purposes of course).

After my day on the settee I thought I would do something different in the evening and ended up walking around the Tate Gallery. Yes you heard me right I was walking around the Tate Gallery and all without any crutch support. I have to say I am impressed and not just because I didn't use crutches, art really is interesting.

But as the night closes in and the day comes to an end I realise that the no crutch thing really was me being ambitious and as I take up my regular spot on the settee I know that am currently paying the price for an evening of fun.

Was it worth it? You bet it was.

And tomorrow is always another day.

Tuesday, January 06, 2009

Okay who turned the freezer on?

I've discovered something new about mr lupus (is there no end to this man?) he loves the cold.

How do I know that?
Well as I sit here writing this my hands are swollen (but I am a writer so the words must go on) and my feet feel like blocks of ice so I am convinced that he and his mates are taking advantage of the change in weather and are currently skating over the ice that now seems to have formed in the nerves in my legs and my hands and are having themselves a whale of a time. I on the other hand am not faring quite so well but I have never (well almost never) let pain and discomfort stop me from fulfilling my mission.

I am now totally convinced, even though the medical practitioners may state otherwise, that I am a child of the sun and only regular doses of sunshine can save me. I wonder if I can get that on prescription? Now there's a thought and definitely something I will take up with my Rhematologist when next I see here.

But for today, I am just going to wrap up warm and wait for my legs to thaw so that I can use them again.

Nothing like the simple pleasures in life!

Friday, January 02, 2009

It's a new day!

I have successfully navigated my way through three or maybe four weeks of hell living with mr lupus, three doctors visits and mountain of pills and pain killers to be able to say Happy New Year and now that normal positive thinking has been removed. Now the half full glass is back in its rightful place I am led to believe that the iron grip of mr lupus in the last few weeks of 2009 was actually him doing me a favour. Yes he was working for me this time (I know that maybe hard to believe but..) and having his wicked was with me in 2008 to make room for a more positive 2009.

Well in order to make room for something new you need to get rid of something old first. (I must try that with my wardrobe :-)) So here is the new me (almost) pain free but definitely up from the settee, no longer watching 24 hour tv and drawing my curtains. If nothing else happens that's okay because that alone says mr lupus I'll take it from here.

What do you need to get rid of to make space for 'healing' and fun in 2009? Maybe now would be a good time to make a change and do something different. Sit up instead of lying down, turn off the TV and turn on the radio, write down how you are feeling, anything that means this is not a prolonged 2008 and infact a new year, a new dawn and a new beginning.

I'm actually looking forward to the powerful possibilities for 2009 so I wish you a pain free, fun filled 2009!

Watch this space because whilst I have the energy I am going to use it!!