|Posted on February 26, 2011 at 2:11 PM|
I doubt I will ever understand this ‘thing’ they call Lupus, despite being affected by it for virtually all of my life! Systemic Lupus Erythematosus, hard to say yet even harder to live with. Sometimes called the ‘wolf’ the most misunderstood and misdiagnosed disease in the history of medicine. I should know, it took nineteen years to arrive at a diagnosis. Endless hospital visits, episodes of devastating ill health, wrongly being labelled as having ME. Eventually, after seeing the same consultant for years, a series of blood tests revealed that my unsuspecting body was actually under attack from this auto immune disease called Lupus! Incurable, but in most cases manageable, and SO very frustrating due to its unpredictable nature; not to mention the incomprehensible exhaustion that curses most of us.
No two people will suffer Lupus in the same way; many, like myself will have other related conditions. Arthritis, Fibromyalgia, Sjogren’s syndrome to name just a few. Regular appointments with a Rheumatologist is necessary if Lupus is to be managed successfully, as GP’s knowledge of the disease remains somewhat limited. Many will have few ‘Lupies’ (the endearing name we give ourselves) on their caseload if any!
In a nutshell that’s it… Does it make me feel better writing about it? Perhaps the cathartic process of tapping on the keyboard pouring out my feelings about this little known disease should somehow make me feel better. Today however, it doesn’t! and if you will forgive me I’m about to let out a rather large Grrrrroan!!! Yes, you’ve guessed I’m frustrated, weary, and wishing that for once, just once… not a lot to ask is it? That I could venture out of my comfort zone and not have to pay the penalty for assuming an ‘almost’ state of normality.
My little girl, always ‘My Little Girl’ regardless of the fact she’s twenty two! was in crisis this week and really needed her Mum. Bristol is a long drive for anyone; more so for a ‘Lupie’ and for those of you wondering, I don’t ‘Do public transport’ Oh my goodness, NO! The thought of being away from my car thrusts me into nervous panic… I’m very heavily reliant on my vehicle.
SO, my daughter needed me and I needed to see her! The logical solution was to meet half way in Birmingham and spend two nights in a hotel courtesy of Superbreak, a very respectable deal indeed.
It was lovely to spend quality time with her, regardless of the circumstances being less than ideal. She was in need of TLC; what better way to administer it than taking her for some retail therapy. Apparently a cure for all evils, but boy! Does my girl know how to shop… ‘til you drop is most apt in my case, and I did, on a rather large sofa in the changing room of Top Shop. I must just put this into perspective; this shopping expedition by no means matched the type my sisters regularly encounter. For most it will be unimaginable that the simplest task of retail therapy could be enough to induce an exacerbation of symptoms… WHY?? I wish I understood.
I’m home now, and have once again gone to ground! I need to recover ahead of my first signing event next week. I’ve remained in my pj’s all day, shut out the world and, as is usually the case I’m having to accept that it will be a few days before I can do much else.
Before I end this blog I would like to say a BIG thank you to all of you who have purchased my book ‘Raw Emotion’ Don’t forget an annual donation from the royalties will be made to Lupus UK and Breakthrough Breast Cancer during their awareness month in October. For those of you still thinking about purchasing one please do show your support. Also, I will be at WHSmith Accrington Lancashire on 5th March from 1pm and Waterstones Bolton on 12th March, again from 1pm signing copies of the book.
So, between now and then I aim to administer my own TLC, and until next time, Godbless!