I have been reading a lot of interesting articles of late about dealing with diagnosis; great articles, but ask yourself if you can ever be prepared to find out you will never be well again. Take a second and really consider that notion. You know you are not well that is a given...why else would you be sat in a hospital room, you know the news is not going to be great so you have prepared yourself which probably involved the words "you will get through this"....then the moment comes when you find out that you simply wont get better...for every day of the rest of your life you are going to be ill.
It's not something that can be rectified, you will sometimes feel better than other days...you will be able to take tablets to make you feel a little less pain...you may even have periods when you feel like your old self. BUT you will never be well again because your body is attacking itself and you cannot stop that! This is something that you simply cannot prepare for, everyone will react differently...I will tell you how I did...but it involved me humming the Rocky theme tune in my head! So what is it really like to be diagnosed with an incurable disease? Well here is my story!
I am young, full of energy and perfectly with it.........Nope that is a lie.....
Well I am young, or I was at diagnosis, or I still am...I don't know any more. Anyway back to my point! I am young and I have always been reasonably fit, alongside which I have always or for as long as I can remember, been tired. Things hurt, my feet hurt, my hands would hurt so much I couldn't lift a cup of tea, my head would throb uncontrollably and my back was destroyed! However, I was young, I was active and I was a bit of a festival going hippy! But something was wrong and I knew it deep down, plus that persistently swollen ankle was just starting to annoy me now....I haven't even hurt myself...
So a trip to my GP was in order and there I was, being prodded and asked a million questions...do you drink, do you smoke, do you exercise, have you twisted it, do you get kidney infections. "Well it is probably reactive arthritis" she said...."Great" I said...but what the heck is that. Well it's a form of arthritis brought on by a virus that lasts a number of weeks then goes away. I was given painkillers and sent home. Then one month later with an ankle that was now twice as large, I hobbled back and that is when all hell was let loose!
I hate needles, what are these words they are saying and why wont anyone give me a straight answer?
I apparently needed blood tests....and lots of them...14 viles to be precise! Great start to my day and even better when they tell me WHY I need blood tests. It could be cancer...brilliant news...but its more likely to be Lupus...however we don't think it's anything more than reactive arthritis. Hmmmmmm I think to myself....Can I choose option 4...nothing is wrong?
The blood tests checked for everything you can test for. Thyroid function, liver function, blood cell counts, antibodies of every single variety......and guess what....3 days later they came back NEGATIVE!!!!! I was fine! Thank goodness for that. Although I feel awful, I have night sweats, headaches, temperature fluctuations, rashes, kidney infections all the time and I am loosing my hair....I am fine!
So why did I have a niggling feeling something was wrong? Then the phone call came! We missed 2 results both of which have come back positive and you need to be sent to a Rheumatologist....A what now?
I go home, I have a small moment of panic and then I hit Google with a ferocity I didn't even know that I had. Rheumatologists - a specialist in Rheumatic diseases such as RA, Lupus and Scleroderma (each of which I am blessed with). Oh dear this could actually be serious....so I Google each disease....a terrible idea and a bottle of wine later I am a mess of tears on friends shoulders.
The appointment....I need a drink please...do they serve beer in hospitals nowadays?
So there I was. I had very little idea of the outcome of the appointment, let alone what to expect from one. I had only ever been in hospital a handful of times...I don't know the drill here. Then my name gets called. I need to be weighed - not great when I feel a little on the chubbier side of myself, my blood pressure is up a bit......well I am a little stressed out here and I need to wee in a cup! Could my day get any better at all?
I get taken into a room, told to put on a backless gown...I am not wearing suitable underwear for this...The doctor comes in with two students! More people seeing me semi naked, brilliant, but they have to learn so I agree to let them help the examination. They look at my skin first, noting my mottled and pale complexion, pointing out my swollen nail beds and asking lots of questions about how I react to the cold "I go blue and red" I respond...
They then start on every single joint in my body...every one they manipulate feels like thousands of needles are jabbing into my bones.....wince, ouch, moan, try not too show this hurts a lot. They know though and they mumble to each other. Then they go over my history and the consultant asks the students, "what does this look like to you"....they respond with "this is classic Raynauds Syndrome and Systemic Lupus Erythematosis".........Lupus I know that word, that's the one that can destroy your organs........crap!
Then I am told they need more blood work..15 viles this time..they prescribe painkillers and steroids for the pain..I am told the steroids will make me put on weight but I am told they wont give me a diagnosis yet. That's it, I am sent home. Not only dealing with the fact that they think I have lupus, but with steroids that will make me put on weight. I think of a million things I should have said and asked but I was blank at the time.
The final push to the top of the mountain
3 months later I get a letter......yep I waited an entire three months to get the appointment however when you have been ill for 10 years it really didn't matter at this point. I sit there again, only this time I know a little more and knowledge is power. I know there is something wrong with the blood vessels in my hands and feet, I know I have something called Livido Reticularis, Raynauds and some kind of lupus I think...hopefully not though as it sounds pretty soul destroying. I get called in for another weight check and my blood pressure is now sky high! They look concerned but assure me it's probably my nerves...which at this point even my butterflies have butterflies. Then the moment comes...I am sat on my own in a small room that smells of cleaning fluid and sweat...alone and scared.
" Your blood tests show you have a highly raised white blood cell count, a positive ANA, positive Anti-Centromere, Positive Anti - Ds DNA" and then I switched off....I have no idea where I went but I drifted off to a happier place. " All of which, along with your symptoms, point to you having Lupus....." and I am off again, somewhere else, somewhere happy and warm and safe.....WAIT!!!!!!
I need to listen to this, I have questions, but I have no voice, my heart is beating out of my chest and I need some air! I ask if the window can be opened and then she mentions that I don't have a simple case as all blood work and symptoms point to multiple diseases, brain involvement is a possibility and kidney involvement. she moves on...sticky blood......could lead to miscarriages, strokes, heart attacks....I feel sick I need to get out of here. She says not too worry as they have got it quick enough and that I will be fine...I don't feel fine....I don't feel anything at all....then something hits me. I need to fight this, I need to be me, I cannot let this change me! "Great I say, so what is the treatment"
That's it. I walk out with an appointment to see a specialist nurse as the drugs they are prescribing can make you very ill, I am given a much higher dose of steroids that will change my body image. How do I tell my parents...my mom will worry...I don't want people to worry. Will I work, or will I have to stop?....Will I be ok? Maybe but maybe not. Why do I feel alone when I am surrounded by people?
That was all it took to change my entire life. Since that day I have learnt to live with it, I have changed my entire life, my entire outlook, how I view the world. I fight it every day, I fight to keep going everyday. But mostly I fight to be me...in ways you will never see...that day changed my life...but for the best not the worst as I now respect myself more than I ever thought I could.
My diagnosis has since changed...but I now knew the score..when it did change to Mixed Connective Tissue Disease I coped with that, the same way that we all do...we just get up, get dressed and carry on.....
