Tag Archives: doctors

Invisible Diseases

7 May

So, what’s actually wrong with you anyway?

  • Chronic Fatigue Syndrome
  • Hypoaldosteronism
  • Cyclic Vomiting Syndrome

Those would be my main three. But that doesn’t really give a list of symptoms; just names of diseases, handed out on a silver platter after months or years of testing, hundreds or thousands or tens of thousands of dollars. And you haven’t even looked into treatment options yet.

All of these diseases are what I call ‘invisible‘.
While I do not in any way undermine the suffering of those with visible diseases, having an invisible one is just as hard, perhaps even more so. You might get the stares from strangers, but you aren’t judged as being ‘just lazy’ or ‘over exaggerating’. This post is mostly going to be about my dealings with Chronic Fatigue Syndrome or CFS, not to be confused with CVS, Cyclic Vomiting Syndrome.

I was diagnosed with CFS just after turning 14. I had had a bout of Glandular Fever in year 7 (2000), and then another in January 2002. At the time I had been told you could only get it once! Imagine my surprise. I remember the first bout being a pain in the bum and feeling pretty crappy, but the second bout was spectacular. I was getting into heavy metal music at the time, I’m pretty sure Disturbed’s ‘The Sickness’ was on repeat for a good week. Quietly, of course. I had a bottle of moisturiser on my bedside table, and every time I woke up I would slather it on my lips, because they were cracked and bleeding. My mum would beg me to drink water, but I would roll over and go back to sleep. I’m ashamed to say I recall her sitting on the end of my bed, crying her heart out. 
Next thing I know, I’m in hospital! I’d never been before, so it was a whole new experience for me. I was in Armadale-Kelmscott Memorial, in a private room on the children’s ward. I was given the children’s menu but was often brought a random ‘normal’ dinner instead, because I was a ‘big girl’ (tall, not large) and didn’t need to eat chicken nuggets. I was too tired to explain that I was too weak to lift a fork or spoon to my mouth, a chicken nugget is all I could try.
I had a nurse who would tell any visitors that I was ‘highly contagious and shouldn’t have visitors’. She scared the pants off of my aunt Shirley, who had come to visit with a bag of mints for me, of all things. I watched the whole series of the Hopman Cup that January, from my hospital bed. I badly needed a shower, and fortunately I had a chair in there. At 13 years old and just beginning to develop into a woman, I certainly didn’t want anyone to see me naked. I had four drips, one in each elbow crease and one in the back of each hand. I cannot remember why I had so many. A nurse had disconnected them for me and left me in the bathroom fully clothed, and walked away. I spent the next 25 minutes pulling an oversized t-shirt over my head.
Twenty-five minutes.
Everything kept getting stuck on the drips, they hadn’t been bandaged and I was afraid they would rip out of my skin. I sat in the shower chair, continuously having to stop to rest my arms. I cried. I considered asking for help, but I was sure the help buttons are for old ladies who had fallen and hurt themselves, and women giving birth on the toilet. Not some youngster trying to get undressed. I was in hospital for three and a half weeks before I was well enough to walk 10 steps. I was discharged 3 days later; as soon as I could manage to walk to length of the hallway.

And so I began my descent into the unknown, confusing and scary medical world.

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Tests, Suicide Bomber style. At least I could take this one home!

Back home, things didn’t improve as much as we had expected. I couldn’t get out of bed. I would crawl to the toilet. I slept 20 hours a day. Within 6 months, I had no friends left. On the outside, I didn’t look sick, I hadn’t lost my hair from cancer treatments, and I always kept a smile on my face to the world. I was bullied and called a faker, lazy, and an attention seeker. Every friend I had, turned their backs on me; began to obviously leave me out of the groups and giggle and look pointedly at me. I cut back on my public schooling (I was doing 2 hours a day 3 day a week) to do Distance Education and eventually dropped out of the system altogether. 

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Due to my Hypoaldosteonism, my blood pressure is WHACK. That’s really the only word for it. It always freaks out the staff of whichever hospital I’m in until they get used to it. I had so many heart tests done- so much green dye and boob flashing at young male student doctors at Hollywood Hospital. I forget what I was in for this time, but those PJ’s look familiar.. 

I saw four doctors each week. ”Just for funzies”, I used to laugh. They ruled out one thing after another, a process for diseases for which there is no specific test or which closely resembles other diseases. My bowel became my enemy. I would spend my waking hours crying. I would whimper down the phone to my great aunt Dawn, one of the few people who cared enough to listen to my pain. I spent most waking hours on the toilet, in agony, and if home alone, screaming my pain at the clean tiled walls. I had no one to share my secrets with, we didn’t have the internet and the words ‘support group’ were never uttered to me. I hide in my pain, wallowed in my misery and hoped that one morning, I wouldn’t wake up.

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Why do they always leave you to take these off? Like you weren’t violated enough already having a room full of people looking at your chest? Poor bloated tummy, pretty sure we ended up having surgery after this to remove a large leaking cyst, which left three scars.
I spent the next 7 years in a haze of depression. I spent countless weeks in different rehabilitation clinics, countless months in hospitals. I have taken thousands of tablets, had hundreds of blood test, so many intravenous drips that the veins on my arms will never truly heal. I’ve had to have ultrasounds to find veins available for a new drip every 8-10 hours because the latest one has collapsed, just like the one before that, and before that, and before that. Once I counted; I stayed in hospital for 4 weeks and had 51 different cannulas.

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Oh yeah baby, break out the red cordial. Gotta love the doctors that give into your pleading/manipulation for something to drink, and spoil you with cordial to help with your blood sugar levels. Also, huge jumpers are highly successful in covering multiple machine attachments.
My stomach and bowel are always in pain, and often agony. I’ve had more colonoscopies and endoscopies than I wish to admit, I’ve had small bowel scans and drank countless litres of gut cleansing laxatives. If you’ve never had tubes up your nose and down your throat, you haven’t felt nothing yet. I cannot handle the nose, the pain drives me nuts.
They’ve never found the problem. If my anxiety gets too bad I begin to vomit every 20 or 30 seconds; I cannot stop, sometimes for weeks. This is the CVS. I cannot even keep a sip of water down. I constantly wretch the nothing I have to throw up until I get so exhausted that I can’t vomit into the bag anymore, and end up just vomiting my stomach lining onto myself and the bed. Once I did a huge liquid crap in my pants while I threw up. I didn’t even know I needed to go. They wouldn’t let me have a shower, because I was ‘too weak’, not even in a chair (obviously) and with the help of Roland, who was happy to assist. Instead they gave me some wet wipes and some hospital undies. I threw out my knickers. I didn’t try to wash them. Like many others thrown out from sudden periods when I was on the pill and couldn’t keep it down. Just what any girl needs, their period when they already are too weak to lift the plastic cup of water to their lips. 
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Blood transfusions following surgery complications leading to severe blood loss and emergency surgery. Of course it was the one day they didn’t do surgeries and had to call in a bunch of people, as well as send everyone already in the waiting room to see the specialist home. Every day for the next 6 months I would think I was bleeding again and have to check. It was a year before I finally stopped doing this. 
Its pretty safe to say, things got out of hand. I was always sleeping, and rarely eating. I was always told to get exercise. Soon I was eating either an apple or a plain scone per day. I had never been overweight, but I lost 10kg in that time and managed to maintain a scarily thin 51kg for my 5’11 frame. My weight was the only thing I could control, and I did it well. During this time I kept my first real journal in the form of an online blog. I belonged to groups dedicated to anorexia and other eating disorders. I worshipped rules, counting calories and getting rid of them. I would even purge if I did accidentally stuff up and eat too much.
Looking back, its easy to see how I got there. I was on all these different medications that didn’t seem to be making a difference, yet I could control the amount of food going into my body and I could make changes that I could see were actually happening. I needed SOMETHING to happen. 
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I didn’t take many photos during this time, but this is one of me looking a bit too skinny. This was a 40 degree day in summer, but I was still cold and wearing a jumper.
I went into Perth Clinic, which deals with many different problems. I was in there for many reasons, but the biggest one was my full hospital cover private health insurance. I was introduced to Perth Clinic by my aunt who also has Hypoaldosteronism. She found it incredibly helpful and her specialist, who I saw for 2 years, worked 100 metres away and would come visit her.
I can’t say I had the best experience there. My depression and anxiety were uncontrollable. I had an older male Asian doctor. Every time I used to leave his office with tears streaming down my face, being told horrible things about myself and confirming all the negative self-beliefs I had within myself. I was under his care for 3 years, and in such a negative head space that I didn’t think I had the right to request a different doctor. I thought that he must be right about me, I must just be useless. One day my partner Roland came with me to see this particular doctor. As we walked back to our car, me crying as usual, he told me, ‘You are never, ever, ever seeing that doctor again.’ To this day I’m still glad I left Perth Clinic. I had some great therapists there, but my personal Psychiatrist was not one of them.
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 Me and A recovering in Perth Clinic… Anorexia for me and Bulimia for her. We got so fat, dyed each others hair, went into the city to get piercings and stayed up late making up the dumbest quizzes which were, of course, totally hilarious. We used to plan to go into the clinic at the same time just so we could hang out- talk about extended slumber parties! I think our longest joint stint was around 2 months.
I get incredible muscle pain that leaves me sobbing into my pillow in the foetal position. There are so many ‘small’ things that always hurt, that I just don’t even notice anymore. Parts that always ache.
Every day is still a battle, but my depression has lifted. I have people I can truly rely on. I may be able to count them all on one hand, but I know that they would drop everything to be there for me. They do not judge me; they listen, offer constructive advice and tell me when I’m being too hard on myself.
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Teaching kids life skills through Horsemanship. I’ve also spent time with Riding for the Disabled Association 
I don’t think I will ever be able to work. I’ve never been able to find an employer who understands my condition. But I will continue to volunteer when I am well enough. Sometimes its admin work. Occasionally I’ve been well enough to help teach people to ride horses. I love horses. Since moving to a small country town, I’ve met the local vet, and she has a horse that gets ignored because her kids have grown up and moved to Perth. But he’s the most wonderful horse, and I’m very lucky to be able to ride him and hang out with him whenever I want. I’m incredibly grateful for the things that I have.
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 Me and ‘My’ boy, Blue
I have 2 beautiful little dogs who make me laugh and smile every day. I have the most wonderful boyfriend I can imagine. He has worked hard to understand all of my illnesses. He knows how they make me feel. He may not fully understand the pain I am in, but he tries his best to make me comfortable and happy. When I have to go to the hospital, he makes sure I have everything I need- most importantly, a charged phone and meds. He has held back my hair while I violently throw up into a bucket and simultaneously squirt liquid out the other end of me, both of which smell like something that died long ago and has been sitting in the sun to rot. He wipes my tears, tells me not to worry and doesn’t rub my back, because he knows I hate that when I’m throwing up. He’ll call my mum at an appropriate hour to let her know what’s going on, but that I’m ok, he’s with me. He’ll come and hang out in the hospital even though he’s bored.
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My incredible man and our fur babies
 When we lived in Perth, I got so sick one weekend I ended up in hospital again. In a hospital nearly an hour away from our house, because we were visiting a friend for the weekend. Likely the reason I ended up in that state. He would get up every morning, take our dog outside to the toilet, get ready for work, drive 25 minutes to my mum’s house so that my dog would have her dog for company, drive an hour from there to work. After work he would drive a long way to the hospital to come and spend time with me before he would pick up Harry, the dog (named after Harry Potter, of course) drive him home and cuddle him then finally going home to crash into bed. I was moved to another hospital after 2 weeks because they couldn’t fix me. This one was only about 40 minutes from our house, but in the other direction from my mum’s house. He kept that up for another 2 weeks before I finally begged to be released. I still felt incredibly ill but I wasn’t vomiting anymore and nothing they were doing was helping. I couldn’t eat any of the food. Why is it that private hospitals seem to have the most inedible food? I think its because they try to make things fancy and they just end up plain shit. 
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My 22nd birthday- so far the only one since 15 that I haven’t been incredibly ill/hospitalized. At the edge of the photo you can see the hand on my back- that’s Roland. The pregnant woman in the pink and grey dress is Manda; one of those I can count on. But my best friend, hands down, is Roland.
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 I may not know what the future holds. I may get depressed about it, I may cope. But I will continue to try to keep a smile on my face. A smile is always so much better than a frown! I just want to be the happiest I can, and enjoy as much of life as I can, doing the things I love. I was once told by an elderly lady in another hospital bed how happy she was to see me ‘walking tall and proud’ after I’d kept the whole ward up with my vomiting act all night. I’ll never forget the time we spent chatting before she was moved to a hospital with more resources.
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