Butterfly Walk

The 10th May is World Lupus Day when organisations from across the world unite to try and increase public awareness.

The truth is, if other people - from employers and politicians to friends, colleagues, and acquaintances, people on the bus, doctors and nurses and let's not forget 'Bob your Uncle' and 'Fanny your Aunt' - had even just a tiny bit more of a clue what lupus is and how it can affect people, things would be so much easier for 'loopies' far and wide. It may also be diagnosed more effectively. So all in all, it is my belief that promoting awareness can only be a great thing.

Sadly, World Lupus Day is not top of every one's priorities, and unfortunately this it year coincides with an important date on my Yoga Foundation Course, so I am unable to attend.

So, this is a little plea calling on anyone reading this to help the St Thomas' Lupus Trust by joining them for the 5k walk (or run if you are so inclined). For details:

http://www.lupus.org.uk/news/news_wld.htm

The best bit is that you get to dress as a butterfly! This would be the highlight for me because I reckon the 'butterfly look' has a LOT of potential ... the picture at the top illustrates the sassy butterfly look I would most definitely be sporting if I were there ... who could argue with those metallic leggings!?

Thanks to anyone who does this.

Happy New Year

This is just a quick note to apologise for not having posted anything for so long after having got off to such a flurrying start. First I caught a sickness bug that I picked up in the hospital when I went for my weekly blood tests which put me out for a while. This had a knock-on effect on other things: I had to catch up with work and Christmas preparation – (you know how busy it gets!?), and then came the holiday season. Anyway, enough excuses! I just wanted to say ‘happy new year’ to anyone reading this and thank you so much for taking the time to do so.

Be assured I am now on the case of writing some more bits and pieces that will follow over the next few weeks, and I hope they will be of some interest to you. My aim is to share, discuss and get advice from other ‘loopies’ about getting the most out of life despite lupus. Ideas for themes that might be relevant and useful come from our research as well as my own experience (hence the next feature being about trying to avoid infection – or not, as the case may be!) and I will also share my story so you know why and how this whole Living Well with Lupus business came about. Other issues I am considering discussing this year are relationships, mouth ulcers, Reynauld's, hair loss and yoga.

Aside from wanting better emotional and practical support for people with lupus, my other major preoccupation is raising general public awareness and understanding of the condition. For a disease that affects so many people, lupus has a low profile, especially here in the UK. The good news is that I had an idea when I was in the shower this morning that may help with this (don't worry, I am not planning a 'Fathers for Justice' type stunt or anything like that!) but before I get too excited I need to find out if it could be a goer and if it is, you'll be the first to know.

All in all, I hope you'll find it is worth watching this space in 2009 and keep in touch ...

On my Soapbox

Hospital parking charges are adding insult to injury

Since the beginning of last week I have had to be in and out of my local hospital more frequently than usual due to a dramatic drop in my neutrophils and white blood count, which are now at an unsafe level. It is perhaps because I am now essentially in ‘quarantine’ and feel a bit like a caged animal that I have had time to brood on the issue of hospital parking fees.

Before every hospital visit, I have to scramble around to make sure I have enough change in my purse or go to the cash point and get a note to turn into change for the machine: hassle, time, stress.

As I am never entirely sure how long I am going to be, I always end up paying more parking fees rather than less to cover my back. The fine for not paying or underpaying is big and clamping is in operation. The machine gobbles the coins greedily. It is difficult to know how much money to put in because it is hard to guess how long the visit will take, sometimes there are delays, sometimes I am sent for tests, or to the hospital pharmacy all of which take extra time, but sometimes I am ‘in and out’ like a shot. I never know.

It seems that the system is designed to get as much money from you as it can. It costs £2 an hour. The other day to be on the safe side I estimated I would be an hour and half, so I put in £2.50. The ticket the machine produced, showed just one hour! Apparently, you have to pay £4.00 for one to two hours and there is nothing in between!

This cost and stress is nothing compared to what my family have had to go through during times I have been an in-patient, when they have spent hours and days at my bedside. Anguish and anxiety don’t exempt you from parking fines. There was an emergency situation when there were no parking spaces so we abandoned the car in a residential spot with a note explaining the predicament. I ended up falling unconscious in A&E and my poor mum who was with me in great distress, later discovered she had given a parking ticket to add to her woes. My husband also got a parking fine because he was late back to top-up his fees after another traumatic night with me in a desperate state. He got small satisfaction by calmly telling the warden who was issuing the ticket about the state he had left me in and inviting him to seriously consider what he had just done and how he would feel if it was his partner, then went on to wish him a good night’s sleep. OK, it is probably a case of ‘shooting the messenger’ but I think it made Tony feel a bit better at the time and hopefully encouraged the warden to think about compassion.

I use my experiences to illustrate the point, all the time knowing that this affects everyone. Most ‘loopies’ and their families are likely to have had similar problems and spent a small fortune on hospital parking – in fact anyone with any kind of chronic illness or ongoing health problem is in the same boat. All in all, it costs a fortune not to mention extra stress and hassle at a time people need it least!

Thankfully both Wales and Scotland have made the decision to scrap hospital parking charges, so it seems that this madness is now confined to England (and potentially Northern Ireland who I think are still in the process of reviewing it). And I thought we were supposed to be a ‘United Kingdom’?!

Anyway, in the spirit of the ‘proactivity’ and ‘assertiveness’ of a ‘loopy’ choosing the Living Well with Lupus path (and because I am climbing the walls stuck at home in isolation!), I Googled ‘hospital parking charges petition’ and found the following, and I for one am going to add my name:

http://www.ipetitions.com/petition/toscraphospitalparkingcharges/index.html