Behind The Scenes

I have Lupus, RA and Neuropathy, the good news is that it does not have me!
By no means does it mean that I am in denial, though I sometimes think that I would be better off not knowing. Ignorance IS bliss! I think by this time most of us living with this invisible disease/s want to fly off our rocker and do unthinkable things to the next person saying “But you do not look ill at all, You look so good!”

Ermmm…yes - thanks; I only look good because I had to get up at 04:30 to try too get ready for work. Breakdown time:

• wake up and deal with the cramps in your legs, feet, hands and oh, just every where else!


• Get out off bed (Gods this is hard part)


• Waddle of to the bathroom – where the beepers did my legs and my feet go??!!


• Choices…brush teeth or ty to get a decent hairstyle (The teeth won and the hair gets the gel)


• Breakfast…arghhh, not big on my list so early in the morning, the fact is; no breakfast no meds and if you are a sucker for punishment, skip your meds! Let us pause on the meds for a moment. For those not familiar with all these weird dis-eases, us poor buggers take between 5-9 tabs in the morning – EVERY morning and have to cope with all those nice side effects through out the whole day. My personal favourite – falling asleep with my eyes open in front of my PC at 11 am! I must say it is an art to achieve that, nobody even notices ( if they do, they are polite enough not to mention it!)


• Getting dressed is next on the list…you know that nice shirt with red buttons and boots with a bit of a heel that you bought a month ago? Well, the sad news is, is that you will not be wearing it today – in fact you have never worn it outside the fitting room.


• Yelling at the children – this takes its toll, by the time you got them dressed and ready for school, you are ready to get back into bed.


• Drive to work – I can not remember my fingers hurting this much this morning, must be imagining it, OK maybe not, seeing that they are turning three different colours. The window goes down and the hand goes out – need to get some circulation back into the right hand, then it is the left hand’s turn (this one just gets rubbed from the palm to the finger tips)

Well this how most of my mornings go. Sometimes it is worse, sometimes it is better. Hell, I wish I could have one NORMAL day for a change. No cramps, no headaches, no tiredness – just…yes…nothing (and no I do not mean death!)

Just not enough!

It does not amaze me at all that the greater population in South-Africa does not have a clue of what Lupus/RA and other auto-immune disease are. I can make this statement, seeing that some GP’s don’t even know what it is!

Some time ago when I was diagnosed with RA, I had to go see the company dr (please note I wrote Dr with small caps as per my opinion he should not even be qualified to be a vet!) He told me that there is nothing wrong with me. Keeping in mind that I spend just over two weeks in hospital at that stage, I wanted to say very nasty things to him. But he did ask me what RA is and admitted that he does not know much about it. This did not make me feel better knowing that, in fact I wanted to ask him where he bought his lucky-packet.

Gods! I hate that man. He then sent me for evaluation at some place up in the middle of nowhere (of course his wife is running the place). HA, what a joke. First they let you climb stairs….. hallo are you stupid or just born brainless? When I say climbing stairs, I mean a LOT and very narrow stairs. Yes, I got more than halfway up and could not get down again; my legs just would not work. Reminds me bit of that song “Old King Cole”. Not to mention the bucket full of sand…or was it stones that I was required to carry around…

In most major countries in the world, you have Lupus and other auto-immune medical and community centers. Trying to find one of those around here is like looking for a needle in a hay-stack! I am just so fed up of running around trying to find some support that is actually helpful.
So much is known off other diseases like HIV/Aids, cancer etc. But just mention RA and people tell you that should drink more water, eat more veg and fruit, my personal favorite is when they try to convince me that all this very expensive stuff that you buy in the chemists actually work. I am not even aloud to take some of that stuff! I do not have arthritis, I suffer from Rheumatoid Arthritis and some of that crap that you want me to take will kill me if taken with my meds! Please do not forget that any veg/fruit that contain acid is not good for you…sure…

Don’t even mention Lupus…ermmm is that not a wolf? Why do you have a wolf disease??? Ohhh hell, I do not even want to go there. I try to be patient and most of the time I will take the time to tell them. It is just that these diseases really do not get enough coverage and people should know of these potentially fatal diseases. Employers must take the time and go and read about it, get some info from professionals on how to deal with employees that suffer from these horrible little monsters. One moment you are ok…then the next you want to fall over, this can not be easy for an employer to understand or comprehend as the chances that they will ever experience it is slim (hopefully).

It is not easy tending to these monsters. No one knows where they came from, no one knows where they going and we just have to accept that they here to stay. Knowledge is power. My monsters are not leaving, I deal with them on a daily basis and so is thousands of others.
It is time that these diseases also get brought out into the light and people out there are made aware of them. In this case ignorance is not bliss; it could cost someone their life.