"Where there is creativity, there is hope." ~ Donna Karan




Wednesday, September 25, 2013

Holidaying in The Sunshine State- Day 4

I'm quite sure that it is obvious that I am struggling to blog regularly. I think it is well and truly evident in that I'm still posting about my holiday over a year ago. The plan was to have all the posts up within two months, but you know, chronic illness always has its own agenda.
Day 4 of our holiday was a day of rest, which I sure needed after riding roller coasters for most of the day at Movie World (chronic pain and roller coasters = ouch). Apart from feeling like I was recovering from surgery, I had a really nice day. 
In the morning I hung out the back of the holiday house we rented with my sister and watched the ducks and swans paddle by. Having a lake as your backyard is something I could get used to, it was so relaxing.
I wish I could enjoy watching swans every morning.
The only downside to having a pool deck combined with a lake as your backyard is that you battle ducks constantly flying onto your deck, jumping in the pool and making a mess. Eww. It is quite lovely to be so close to nature though.
My favourite photo of the day.
Naughty, naughty duck.
In the afternoon we went for a drive and did a bit more sightseeing. We ended up down at the beach which was a spur of the moment thing, clearly.
All ready to hit the surf, not!
For dinner we chose to try a new pancake restaurant. I was excited to see that they had wedges on the menu.
They were really nice.
I ordered strawberry pancakes for dessert because you can't go to a pancake restaurant without ordering pancakes, it's just darn silly! However, I wish I hadn't. Man were they disgusting. YUCK. When they brought them out I immediately thought they were way too thick. It's usually not a good sign. They were the most doughiest pancakes I have ever had. I took two mouthfuls and then decided that eating them wasn't worth the calories. I was so disappointed because I really wanted to enjoy some nice pancakes. It was a real shame that a pancake restaurant was serving up terrible pancakes when it's supposed to be their specialty. I walked out wondering how they did good business. Turns out they didn't and they closed down. I'm not surprised at all!
In the evening we went to the movies and saw The Best Exotic Marigold Hotel. Watching a movie while on holiday is mandatory and I really enjoyed this one.

And that is how we spent day 4.


Catch up:


Friday, September 13, 2013

Choosing acceptance means I'm choosing to fight.

When I was first diagnosed with Fibromyalgia, Arthritis and Endometriosis, I was determined not to accept these conditions for my life. I spent a good few years going from pill to pill as I was eager to try anything thrown my way out of desperation to get better. I tried physiotherapy, different diets and natural remedies; all in the pursuit of wellness. To get myself well again and back to living the life I enjoyed became my primary focus. I let it consume me because I didn't want to feel like I had lost control of my life. I didn't want to feel fearful about the future. I didn't want to feel sorrow, anger and anxiety. I didn't want to have my dreams destroyed. I didn't want to see my life come to a grinding halt, so I was determined not to let these illnesses stop me from doing everything I wanted to do. In strong denial I ignored my physical limitations and set out to defy them despite my muscles and joints screaming out in agony. I pretended to be well, when deep down I knew I wasn't.
 
Three years in a row I forced myself to return to university to study what I was passionate about, even though I knew that it would be too much for my foggy brain and pain ridden body. When I finally acknowledged that continuing my studies wasn't possible, I ran straight into that denial wall again and hit it even harder. Having to let go and stop pursuing my dream career was a burden that was just too much to bear. I broke under the weight of it. I was inconsolable. I remember sitting in my room just sobbing and staring at the wall, trying to process it all. I couldn't see a future. I thought my life was over.
 
Because I couldn't see a future, I got frustrated and I did a lot of stupid things like applying for an interview for a full time job, even despite my failure to keep up with part-time study. And whenever the reality of it all smacked me in the face, I went for a run; completely ignoring my weary body. I wanted to run away from reality, and in my denial I thought that if I could just keep running and hold onto at least one thing I did pre-sickness, that all of this would just melt away. I thought that letting go of my routine, my pursuits and dreams would mean letting illness win; but I came to realise that continuing to live in denial would mean losing. All of my efforts to get better quickly were futile and I was only left feeling bitterly disappointed and hopeless. Smothered by a blanket of depression, I was hating life, and I resented others for enjoying theirs. I certainly wasn't winning.
 
I had to accept that life as I knew it was over. I had to come to terms with the chronic nature of my pain and the unpredictability of it all. These illnesses weren't going to magically disappear. I had to make a decision to stop fighting against my illnesses because in doing so it was only causing me more anguish. It was stealing an incredible amount of my mental energy, which also drained my physical energy. I had to choose to accept that I had limited energy and that I had to invest it wisely. I had to choose acceptance in order to move forward and create a new normal for my life.
At first I couldn't see a way forward. Who was I without a degree and a job? How could I possibly keep on living if I couldn't do what I loved? How could I find meaning and purpose in just writing, reading or watching TV from time to time? But as the years have gone by and I've had time to grieve, heal and pursue acceptance, I've learned a lot about myself and life. I've realised that instead of being immobilized by my limitations, I can choose to embrace them and enjoy life.
 
Accepting my illnesses has allowed me to see each day as a precious gift. I've been able to stop and think: "How can I make this work for me? What are some things I can still do? How can I better myself? How can I use this experience?" I've been able to seize the opportunity to grow and learn. Acceptance has given me a better perspective; a launching pad to create something good out of the bad.
 
Choosing to accept my chronic illnesses has allowed me to discover new dreams. I am more positive and hopeful; I can see a future in spite of illness. Admitting that I have a chronic illness has been freeing, and accepting the uncertainty has enabled me to discover new talents and find out who I really am. Making peace with the pain and fatigue and choosing to work with it instead of against it has helped me to take back some control and live a life that isn't defined by illness.
 
I am taking this chronic illness thing and running with it. I am reinventing myself.
 
So what have I learnt about acceptance? I've learnt that it's far from easy. I've learnt from experience that you will come up against people who will criticise and condemn you for choosing acceptance because they equate it with giving up. They think that surrender means defeat. They think you're choosing to lose. They think you're choosing to stop fighting, when that's not true at all.
When I started welcoming acceptance I consulted with a counsellor, who to my disbelief, told me that I was too accepting of my illnesses. She told me that I wasn't fighting hard enough and believed that I was too happy to just sit back and say "oh well." For some gobsmacking reason she had an extremely warped and very wrong view. To her, accepting these illnesses meant that I was shutting the door to getting better. Here was a woman telling me that I wasn't doing a good job. According to her, I was letting these illnesses control my life. Apparently I was doing sick all wrong.
 
She couldn't understand that I was choosing acceptance in order to fight. I had to. My survival depended on it, yet she was telling me that I wasn't fighting when I was choosing to fight every single day. I fight every time I swallow a pill or inject myself with a needle. I fight when I get out of bed when all I feel like doing is sleeping all day. I fight when I exercise when all I want to do is sit on the couch, eat chocolate and watch TV. I fight when I leave the house despite not wanting to. I fight when I write and publish a blog post. I am fighting pain, fatigue, doctors and people who question whether I'm really ill because I don't look sick.
 
I am making choices. Acceptance is a constant choice. I can either choose to live in constant denial or I can fight for my health by letting go of unrealistic expectations. Accepting my illnesses has been the hardest thing I've had to do, but it has been the best thing I've done. I can't always control these illnesses, and sometimes I feel that I am robbed of choices but acceptance has allowed me to reduce the impact that chronic pain has on my life. I can see that I still have some control and that I can and am making good choices everyday.
 
I didn't choose chronic illness. I wish I wasn't ill, but I am, and now I'm learning to live with the pain and fatigue as best I can. Choosing acceptance means I'm choosing to fight. I'm choosing to control my thoughts. I'm choosing to get better at managing these illnesses. I'm choosing to grow mentally, emotionally and spiritually. I'm choosing to find joy in the small things. I'm choosing to be better, not bitter. I'm choosing to write. I'm choosing to encourage and bless others. I'm choosing to dream big. I'm choosing to live creatively. I'm choosing to hold onto hope. I'm choosing to thrive. I'm choosing to get the most out of life in spite of illness.
Acceptance isn't a bad thing, it's really positive. Accepting your illness is a beautifully brave thing to do. I'm not saying that denial is bad- it's a normal response to a life altering illness. It's a natural part of the grieving process. It's permanent denial that's damaging, so make a choice not to stay there. Acceptance takes time and hard work, and when you're ready, embrace it. I promise you it will be worth it.
 
This post was written for Invisible Illness Awareness Week. This year's theme is "I choose to..." Invisible illness isn't a choice, but what do you choose in spite of it?
 
(C) 2013 chronicallycreative.net
 

 

Tuesday, September 10, 2013

The mystery of the dilated pupils {part 2}

Not up to date on the dilated pupils saga? You can catch up here.
Sometimes doctors are idiots. So sometimes while I'm at an appointment I like to dream about punching them in the face and slashing their tires all while I keep my cool and act polite.

The mystery of the dilated pupils has been solved. Well, kind of...
 
Last year I had my first appointment with an opthamologist since being prescribed Plaquenil and Humira. It was necessary to make sure that the symptoms I was experiencing were not due to extremely rare problems like hydroxychloroquine retinopathy, neuropathy, and optic neuritis; conditions which although unlikely, can be caused by my medications. Aside from all the issues I was having with a pressure like pain behind my eyes at the time, my GP wanted my markedly dilated pupils assessed. I was really interested to see what this opthamologist thought too, as my pupils were completely normal before I became ill and had to start living on a smorgasbord of pills.
 
The results for every eye test came back normal as I kind of expected. But still, it was a relief to hear it. My GP was almost certain that the pain and weird vision episodes were all part of a sinus infection, however, this opthamologist didn't seemed to think so. He did question whether I had a migraine but then decided on doubting it, telling me that my symptoms didn't really fit with anything. I got the feeling he didn't believe me.
 
As for the size of my pupils he couldn't deny that they are enormous. Many doctors have commented. Medically though, there's nothing wrong with them. My pupils are just like everyone's- they react to light. If I go outside they shrink back to a normal size. If you shine a bright light in my eyes, my pupils constrict. It's indoors (especially dimly lit places) when the size of them looks worrying. They expand like a balloon. So much so that I'm sometimes paranoid about them.
 
I worry that people will notice and start making assumptions. I worry that people will think that I'm on drugs (well I am...just the legal kind). And thanks to my hilarious GP who jokingly advised me not to get too close to boys because they will think I am interested in them (your pupils dilate when you are aroused), I'm now paranoid that men will think I fancy them! Wonderful.
 
It really doesn't help when your sibling makes a point of it, exclaiming:
"HOLY CRAP, LOOK AT YOUR EYES! YOU LOOK LIKE YOU'RE ON SPEED!"
 
I'm really glad there isn't a worrying medical reason for it. What I'm not happy about is the opthamologist's opinion of why they are so large. He compared me to Alice in Wonderland, happily exclaiming "Your pupils are so big because you're just anxious."
 
Well you're just an idiot.
 
Listen, buddy. I've had anxiety since I started high school and I've never had an issue with monster pupils. Besides, I am not anxious all the time, and as I've gotten older my anxiety has gotten better. Compared to my mild case, there are so many people struggling with much greater and debilitating anxiety; and they don't have huge pupils. So no, anxiety doesn't explain this. I know my body and I know that the size of my pupils changed when I started popping copious amounts of pills.
 
Why do doctors blame everything on anxiety when they don't have all the facts? This dude took one look at my referral, saw that I had Fibromyalgia along with Chronic Fatigue Syndrome, and started making assumptions. It really grinds my gears when people just palm these illnesses off as mere anxiety. Just because they can't find something wrong with you in their area of expertise, doesn't mean that there isn't anything wrong.
 
Doctors can be irritatingly narrow-minded.
 
I got the feeling that he got a real kick out of diagnosing me with "anxiety", his self-satisfied smile said it all. What a doosh. I felt that he treated me like a crazy, lying hypochondriac idiot. I felt like saying to him: What would you know? You're just an opthamologist. You don't know a thing about me or about the chronic pain conditions I live with and the issues they create.
 
I left that appointment upset and a little frustrated. I was glad that I had eye problems ruled out but I was also disappointed that I didn't have anything concrete to explain my pain. I was upset because I had a gut feeling that there was something more to this pain than anxiety. If the eye pain didn't turn out to be related to my GP's suspicions, I knew that I would need to seek another opinion- and I didn't want to do that. I didn't want to go from doctor to doctor only to come out feeling more frustrated and more hopeless in the search of an answer that I may never find.
 
The sinus pain did eventually run it's course, but the pain and pressure behind my eyes has haunted me ever since. I tried ignoring it, which worked quite well for a while and I was happy enough to just grin and bear it. That was until the beginning of this year when the strong throbbing sinus pain returned, and the eye pain and pressure increased. I was forced to seek help because the pain became too unmanageable. Now the mystery of the dilated pupils has turned into solving the headache from hell. Since January I've been struggling with constant facial pain. Teeth pain, eye pain, head pain, sinus pain- the works. I've been on a merry-go-round ride visiting different doctors and not really getting anywhere, just going around in circles.
 
Aside from a new drug that has helped take the edge off the pain, over a year since all this facial pain started, all I have is "I think you're just grinding your teeth, are you stressed?" SERIOUSLY?! But that's a story for another post. At least the mystery of the dilated pupils is kind of solved and I now know that their size isn't a concern. I have that to be thankful for.
 
I am convinced that my medications are causing my pupils to dilate. All you have to do is Google 'medications and dilated pupils' to know that there's truth to it. I don't like the fact that I have bulging, cartoon like pupils. I really don't. But I can't change it. I'd much rather have freaky looking pupils than unmanageable widespread musculoskeletal pain. So all I can do is accept it, try not to care what people think, and hope that people will be too distracted by my awesomeness to notice.
 
 
 
    
 

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