I have reached the end - no more humour, no more fight, no more energy, nothing left.......
16 years I have been raging a battle with Lupus, trying to maintain my dignity, maintain a symbiotic relationship to illness that no-one seems to understand.
16 years of constant pain, being eaten away from the inside out, losing my kidneys, having a transplant, having dialysis, organs routinely being targeted, having 'accidents' (and yes that means exactly what you are thinking), being prodded and poked, pushed and pulled, copious amounts of medication, no medication (whichever worked the best at the time) falling over, constant sickness and nausea, swelling, joint pain, pain when you eat, pain when you don't, a face that looks like I have been on steroids for years (oh! wait i have!).
16 years of being ugly, of feeling ugly, of not reaching my potential or goals because I am always exhausted, unable to find clothes that look nice because my stomach is constantly swollen.
16 years of putting off going on holiday (insurance would be too high), of going and lying on the beach (because the sun causes me to blister) of going on nights out (because I do not want to embarrass my friends if I fall over)
Ultimately 16 years of in and out of hospital just trying to stay one step ahead of this illness.
Where's the positivity I hear you cry - well there is, of course and always has been positive things and people in my life. I work (but now have my daughter as a carer after avoiding the subject for many years, as driving is now very difficult), I have an A & E department that know my first name before they have registered me in, I know all the local paramedics, who have rescued me on many occasions and are brilliant, I have a wonderful job (lots of men with no tops on all summer), wonderful bosses, an excellent Dr, who has been with me since day one, wonderful consultants who do their upmost to help, and of course fantastic family and friends. BUT....
NONE OF THEM - see or know what I go through on a daily basis, the lengths I go to to carry on and hold down some normality to my life, to smile, be nice and appear normal. They don't see the constant pain, the anger, the frustration when it takes me 2 hours to get ready for work or from getting out of bed, the sleepless nights, the pins and needles, the restless leg, the constant exhaustion, the inability to string sentences together, the constant battle to get through a day.
I have become to good at hiding it, as many of you would have done too. I have become like a drug addict or alcoholic who hides the evidence, because I so desperately want to live a normal life.
But there is no cure, there will be, for me, no normal life, however much I try or pretend.
What has made me reach this limit? - the weekend from hell. I have just come out of the hospital, agin, after contracting - wait for it - The noro virus.......
As a person with a transplant (only 2 years old and the only one I have!) 8am Friday morning to past midnight that night of constant throwing up and the dreaded runs was not the best way to start the weekend!
My kidney hurt, my stomach hut and every inch of my Lupus was yelling at me and still is. I discharged myself Saturday night (because I felt very guilty for taking up a bed that someone else deserved) only to find my daughter had contracted it.. I felt awful, I suddenly started to see germs everywhere and felt that this was all my fault for not keeping the house as clean as possible - an irrational thought - yes, but I had an overwhelming feeling of complete and utter fear - I had not only put my new kidney at risk, my daughter and her partner as well, from something that should not have happened in my house...... my house is always clean because of the dialysis and new kidney.
So I cleaned and cleaned and cleaned and cleaned and I carried on cleaning and washing until I was so exhausted I could do no more and then I cried......
That was 5 hours ago and I am still crying............I know that I have reached the ultimate limit - Lupus has won... I give up.
So you see, there is no more, no more humour, no more energy, no more fight, nothing left.
BUT - I will still be at work tomorrow...........................