Helen the Butterfly

...continued from 2012 miles (as promised) 

Some of you may be wondering why I seem to have developed a sudden interest in lepidopterology. Here is a story, a true one, that I'd like you all to read. Hopefully, by the end, you will know why I have been rabbiting on about butterflies, why I seem to have taken leave of my senses and started walking 2012 miles and why at some point along the way, I intend to push a wheelchair up a mountain.

Helen is a mate of mine. She's slightly mad and a medic (sound familiar?) I met Helen on a rugby pitch one Saturday afternoon, she was a 2nd row and I was a prop... what do you mean you don't believe me? OK we were both part of the medical team. One of the players collapsed after a blow to the chest and we both ended up treating the guy. There were stethoscopes and sphyg's, oximeters, tubes of various descriptions and as I recall a mad doctor flapping like a headless chicken, although this may have been a relative or the coach, who knows? Helen, being the pro that she is was a picture of total calm, a caring professional in a day-glow yellow jacket and purple gloves. We worked together quite a bit and were like a well oiled machine, never needing to ask what the other one wanted, but always taking the piss out of each other at every opportunity.

Helen isn't a medic now. Not because she doesn't want to be, and not even because my jokes got so bad she couldn't take it any more. Helen doesn't run around with a large medical bag of goodies that's twice the size of her strapped to her back any more. Actually she doesn't run anywhere any more, she can't. This is an email I got from another medic on the same team...

  • Hi Steve,

  • Helen will not be back at work.
  • She is reliant on her chair.
  • She asked me to pass on her email if you want to contact her.
  • See you Saturday.
  • Dave
Dave is not a man of many words!

Helen has Lupus, she knew she was not going to be getting better but had not counted on deteriorating quite as fast as she did. One week she's kicking me round a rugby pitch, then she walked with a bit of a limp, now she is in a wheelchair. She's now planning to have her home modified, or maybe move to another house that she can navigate in her new set of wheels. These wheels don't come cheap you know, about £2k ish for a lightweight fold up thing that she can get in and out of a car. Yeah, she has to pay for the wheels because she isn't disabled enough to get a free set. Having your pelvis and spine fall apart seems to be not high on the 'How disabled are you?' list that the DWP has. So for now she has her bum planted firmly in an NHS thing while she fills out a million forms, nice!
Helen has some carers looking after her and her other half, while he tries to look after paying the bills and pumping up Helen's tyres every now and then. They're going to try and get them a small grant to get them on a holiday, the first one in ten years. They teach people how to lift loved ones without ending up in a chair yourself, and they're always on the end of a phone, which HELEN still needs to give me the number for HINT HINT!

Yeah, sorry I forgot about that. People with Lupus can develop a rash on their face, above and below the eyes and across the nose. It looks a bit like a butterfly. 

So what is Lupus anyway? Lupus is a disease which can present many different facets, rarely do two people have exactly the same symptoms, and these can vary from just one to many. 

  • Joint/muscle aches and pains
  • Permanent rash over cheeks
  • Extreme fatigue and weakness
  • Increased risk of miscarriage
  • Rashes from sunlight/UV light
  • Flu-like symptoms and/or night sweats
  • Weight gain or loss
  • Inflammation of the tissues covering internal organs with associated chest and/or abdominal pain
  • Seizures, mental illness or other cerebral problems
  • Headaches, migraine
  • Kidney problems
  • Oral/nasal ulcers
  • Hair loss
  • Depression
  • Haematological disorders including anaemia
  • Swollen glands
  • Poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold (Raynauds)
So, enough about 'H'
Don't want to go on about her for too long, she'll get a big head

Why am I walking 2012 miles? 
You have to ask?

If I can raise awareness for people with Lupus, maybe help the Carers Support Services that look after people like Helen and her Husband, perhaps maybe raise some dosh to get my mate a new set of wheels. That's why I'm doing it!

Oh, and before I forget, Helen said to me once that she thought it would be cool to enjoy the outdoors like I do. So what better way of adding some miles to my total than to push her up a hill to admire the view, and try out her new wheels at the same time :o) It better be quite a big hill to make it worthwhile, Snowdon or Nevis maybe, or both. Sorry H, but you did say... Mwahahahaha!

For more info on Lupus take a look here

Fancy powering yourself over 2012 miles, for whatever reason? Click this


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