‘Why do we fall down, Bruce?

“Why do we fall down, Bruce?”

“So we can learn to pick ourselves up again.”

Chronically ill people focus mostly on the life that passes them by while they’re sick. It’s easy to do, you lie, stagnant, in bed for days because you aren’t capable of doing more, and with today’s social networking at your fingertips, you can keep track of all your friends ‘out there’ living a real life. People quickly move on with their lives, school friends go to work, college friends move abroad, and you’re still in the same place.  So what do you gain, if anything, from being ill?

If I deleted my medical history, what other assets would I lose? What have I learned that I can carry with me when I’m well again?

I’ve learned humility. Being ill from an early age teaches you that you’re not perfect, and that nobody else is. There are limits to what I can do, and while I’m not happy with that, I know that pushing them will not help my health improve any quicker. I’m where I hoped to be now career-wise for example when I was growing up, but that ideal has changed for me. I’m trying to be the best version of myself within my new limits. I still have the same amount of ambition as ever but now I’m pushing it towards goals I can achieve even when I’m not feeling so strong.

I’ve learned to accept myself. It took me months of therapy to let go of my past before this round of illness. I continued to judge myself against the same high standards as I had before when I was healthy, and I was unforgivable on myself when I failed to reach them. I had to learn to end my sentences with (the perfectly valid) reason for my ‘failings.’ I had to learn to say ‘I’m not top of my class- because I have a serious illness. I was dealing with issues not everyone has to go through, so I shouldn’t have been judging myself against their standards. It was hard. I felt like once I started making excuses for myself, it would be tricky to stop. I’ve always been competitive and ambitious and it was heart-breaking to watch my class-mates graduate ahead of me in college. Since then I’ve had a lot of time to self reflect and learn who I am really am.

I’ve learned self confidence. I’ve been through a lot, and I’m still here. I’ve been in the depths of despair with depression, undergone countless hospital tests and still managed to graduate college during the worst of it. I know my strength. I certainly don’t feel strong every day, mentally or physically, but I know I can survive. I know my weaknesses too, and have learned to live with them, not against them. This might not sound very inspiring to self confidence but with that knowledge of what I can and can’t do, I know myself better than anyone could. I stand up myself more now. I will question doctors if I don’t agree with what they want to try next. Doctors are not gods, and shouldn’t be viewed as such. They are humans, just like you and I, they just studied something else in college.

I’ve learned empathy. We all have different issues to deal with in life, and just because it’s not obvious to the naked eye, it doesn’t make it any less difficult. In fact, it can make things harder; people will stand up and help someone with crutches but ignore the pale face of the woman with MS or Fibromyalgia standing behind them. I can see the real pain in someone’s eyes when they say they’re fine, because it’s the same look I give everyone else. So many people close to me don’t know about my health issues, so I would never take anyone else’s health for granted either.

I’ve learned who to trust. I’m often told I’m quiet, to me that’s not a bad thing and most of the time lately it’s because of fatigue but I just don’t open up to many people easily. I don’t bother telling people who don’t care enough about the medical side of things; it’s just a waste of effort. Close friends in the past have never bothered finding out more about what I go through, when I would have researched ways of helping them if the situation was reversed. My friends may be few in number but the relationships I do have are very strong.

Most importantly, I learned how to be happy. Weeks spent lying in bed or watching TV means I knew exactly how I would spend my time if I had the energy. What you want to be doing most instead of lying in bed is what really makes you happy. Most people are too busy and don’t have the same time to reflect, they have to get on with their lives. I’ve developed hobbies and social networks I never would have dreamed of if I had a more normal working life. Both Crohn’s and Fibromyalgia are linked to stress so I have more responsibility than most to spend my life being happy and as stress-free as possible. Plus it helps with the depression too!

Lastly, I’ve learned speaking up helps. Speaking up about invisible illnesses helps not just people who have them, but it helps educate people who are unaware of them. There’s still so much stigma about some illnesses especially depression. Hiding the problem does not make it go away. In fact, even just seeing it as a problem is enough to make the person with it feel too ashamed to seek help. I’m gaining confidence speaking about what illnesses I have, for the benefit of others who might not feel able to yet. They’re not something I’m proud of, but I’m living with them, and they’re part of who I am now.

What have you gained from your illness?

What’s normal for the spider is chaos for the fly.

If you have a chronic illness, you grow up with a foot in two worlds. There’s the ‘normal’ world, you go to school, spend time with friends, develop hobbies and lead a life similar to everyone else. Then there’s the other world. The world populated with doctors and nurses; where your time is spent on hospital visits, medical tests, and recovering in bed.

If you develop a chronic illness from a young age, as I did, you adapt to your new parallel lives very quickly. As a child I had an insatiable hunger to learn; I was so excited to start primary school. Then I had my first blow to what might have been a more ‘normal’ life. The weekend before school began; I was diagnosed with Ulcerative Colitis (UC). It might even have been the excitement of starting school that triggered it. This meant, right from the very start of my education, I grew up balancing school life and hospital visits. Trying to catch up on missed homework, showing teachers countless notes to excuses absences. Being discreet about my own ‘problems’ led me to assume everyone else must have issues that they don’t talk about too. I didn’t consider myself that different. I just thought we all had something to deal with. Then again, most seven year olds wouldn’t be able to judge whether a nurse was good at taking bloods or not.

I’m lucky enough to have had an illness that does have remission periods so the lapses in my health never lasted more than two or three months. Every four years or so, usually coinciding with some life event like the Leaving Cert, my UC would flare up, I would be put on steroids for eight weeks, walk around with an inevitable moon face for six of them, and I would be ‘ok’ again. Doctors then seemed so in control and confident about everything that UC never bothered me that much.

It was only in what should been my final year of college that the two worlds collided beyond repair. I had just returned from a year in China as part of my degree when I felt another flare-up 10 days after being in Ireland again. This was the first flare-up since moving to an adult hospital. It was also the worst one I had ever had. I remember getting out of the car one day to catch a bus to college and being in too much pain to say thanks for the lift. I went into hospital the next day for the first of the minor surgeries I needed that year. I still insisted on going to college, even though most days I was too weak to walk to classes once I got to campus. My concentration was terrible; I was either in too much pain or high on painkillers to think straight. I didn’t want to let this illness stop my other life. I wanted so badly to be like my friends, who were only worried about passing their exams and having a good time in between. After another small surgery I woke up to be told I had Crohn’s Disease. This changed everything. I finally admitted defeat and deferred some of my exams until next semester. Part of the reason I held on for so long was the only thing that got me on the plane home from Beijing was my promise to myself that I would be back straight after I finished my final year. So I wasn’t just giving up my normal life, I was giving up my dreams for the future.

One of the hardest parts of that year was watching my friends live their lives, with their complaints about being tired because they had been out the night before, or worrying about how they looked. I kept a lot of what was happening with me to myself, partly out of habit, but also because I didn’t really want to talk about it. When I could be in college I wanted to be fully in that world, I couldn’t deny what was going on, but I could escape it for a while. At this point I knew I would be back again for another year in college, to complete the necessary credits for graduating. My classmates talked endlessly about their plans, some to return to China, others to start working here in Ireland. I was diagnosed with situational depression early after the New Year.

That was another reason I continued to cling on to college life as best I could. I was terrified of having to stop, terrified of having to sit at home and face my worst enemy. Myself. There are few words that can describe the sheer nothingness that is depression. Knowing that if you stop ‘living’ there’s nothing to catch you, nothing to stop you falling. I had been kissed by a Dementor, I felt like I would never be happy again. I could still act like I was okay when I needed to, my friends never seemed to notice I was empty inside, I could laugh at jokes but when I stopped laughing, there was just nothing. Depression isn’t just sadness; it’s a lack of being able to feel anything. Your heart hurts sometimes, and you try to hold on to that feeling, because at least you’re feeling something, even if it’s pain. I daydreamed about it all being over. At bus-stops I would award points to cars passing by, based on whether they would kill or just maim me. Trucks usually won. I was disappointed when I woke up every morning, I didn’t want to be alive.

This other world had taken over my whole life. I was trapped in my own mind, listening to advice from other people to try this, or that new thing, or worst of all, to cheer up. I had hardly any energy to do fun things, even if I could force myself to think about doing them. It’s hard to decide whether you want people know what you’re going through or use them as a means of escaping for a while. It’s especially hard to share with your family and friends that you don’t want to be alive anymore. With family I didn’t want to hurt them, and I don’t think I thought enough of my friends to tell them something like that.

Since then I’ve had months of therapy and medication for depression, on top of treatments for Crohn’s and now Fibromyalgia. It’s been three years since I got home from China and I still haven’t gotten to reconsider the offer of trying scorpion which I regretfully turned down while I was there. It’s strange to think everyone I’ve met in the last three years has only known me as ill. People still don’t really understand the extended length of time I’ve been sick. Chronic illnesses don’t follow the same path as illnesses in the normal world. People there go to the doctor; are prescribed medicine and walk back into work in a few days. In my world, I go to the doctor if I’m feeling worse than normal. We chat about medications and doing further tests on me. The doctor might decide to change medications. I’m told it will take at least three months to show any difference and I’m sent home, to sit and rest, to think about life and now to write a blog.

Me In the Forbidden City in Beijing, in healthier times

So what about you? What do you find most difficult about living a dual life?

The Dashing Dalmatian

This isn’t the post I wanted write today. I felt it needed more time though, so in the meantime, here’s a story about the very beginning of costuming for me. This part of my life has helped me meet some really creative and fun people, distract me from being ill and boost my mood when it all gets too much for me.

(Ironically my intended post was about what is normal for some people is vastly different for others.)

I have always loved dogs. I didn’t just want a dog; I wanted to be a dog. So one Halloween I transformed myself into an oddly shaped Dalmatian. I can’t remember exactly what age I was but I would guess about six or seven.

My costume was great, overalls. See what I did there? My amazing costume consisted of a white set of painters overalls, daubed with black splotches of paint and some simple face-paint. I insisted on having a large black spot over one eye, contrary to any Dalmatian I have ever seen. I was a young child, and the overalls were intended for a fully grown man. There was ample material left over to be twisted in a tail form at the back. The size of the overalls also meant in order to keep it on, I had to be sewn into it. Knowing this fact, my mother asked a thousand times did I need a bathroom visit before the official sewing ceremony. I said ‘no’ a thousand times.

I went off into the night, scampering like a puppy after my sister, who had chosen to be a waitress on roller skates. The houses on our road have sloped driveways so we would slowly go up to knock on doors, and then I would have to run to catch up with m sister who had no choice but to roll very fast down each driveway. After perhaps six, seven houses, as well as hopping around with excitement at it being Halloween, I started to hop around for a different reason. I needed to pee, and I needed to pee badly.

I didn’t want to go back home in case my parents said Halloween was over so I tried to wait it out. Nope, I needed to go. I told my sister, she didn’t want to go back home either. By the way, I could still see my house at this point. That’s how close we were.

There was nothing else for my stubborn mind to decide to do than use someone else’s bathroom. I was still on my street; the houses were the same, so any one of them had to have a bathroom right? We rolled slowly up the next driveway. We rang the bell. A man answered. He waited for the obligatory “Trick or Treat” chant. Instead I blurted out “I need to pee!’ so fast while bounding around that he didn’t catch what I said and looked at my sister for help. Being in a calmer state, she slowly asked if I could please use the bathroom. The man couldn’t say no, so I ran in and headed straight for the stairs, to where the bathroom is in my own house. This seemed to confuse the poor man even more, but I didn’t have time to waste. I ran into the bathroom and stopped.

My final obstacle, the man’s wife trying to get ready for a party, was doing her makeup in the mirror. I briefly thought, ‘Oh that’s funny, she’s a cat and I’m a dog!’

Then I remembered my predicament and pleaded to be cut out of my costume as soon as possible so I could go to the bathroom. The woman reacted admirably given the situation; the last thing she would have expected to barge in on her was a panicky Dalmatian. Within minutes I was ready to go back on the road again (tied back in, not sewn), and waved a grateful goodbye to the man and his wife, who I doubt won any prizes for her ‘cat’ costume that night.

My costumes since then have improved greatly, and I have learned to try every option apart from sewing myself in. it is only a last resort now.

If I ever find a photo of this ill-fated night, I’ll update this post.

Understanding Chronic Pain- The Flip Flop Theory

Understanding Chronic Pain- The Flip Flop Theory.

via Understanding Chronic Pain- The Flip Flop Theory.

Making lists

Until a few months ago, making lists was a necessity for me.

On top of trying to graduate from college and then starting a small business, I had the added hurdles of fatigue and poor concentration from both Crohns and depression. Lists kept me moving, kept me on schedule with cupcake orders, made sure I didn’t make 30 One Direction toppers for a comic book convention. Yes, my priorities were odd.

Then the lists became something else. They became a catalogue of all the things I had to do, but had no energy or willpower to complete. Dealing with Crohns and depression while completing a degree was difficult but the stamina I demanded from myself to run my own business at a high standard proved too much.

Developing fibromyalgia as a result of my body being run down for so long meant I had to take a step down from the only thing that was keeping me sane. My cupcake business.

I felt like the only outlet I had of proving to myself I was still useful and could achieve something had been taken away from me, my body had betrayed me once more. Every time I tried to fight back against fibromyalgia, any stress incurred severe back ache, extreme fatigue, and terribly painful skin episodes. I had to stop, ‘ to take things easy on myself’. Easy for other people to say.

Last weekend it hit me hard. I was miserable. I felt worthless, I was tired of needing to be helped all the time. My boyfriend couldn’t do more for me, and I’m so grateful for him, but that’s not the point. It’s that I can’t do it for myself. I felt helpless.

So I made a new list. A list of all the things in and out of my control. I can’t fully control what’s happening with my health, but I can control my diet. I might not be able to make my own money right now but I can decide to spend my time recovering with people I love.

I can’t decide when to get better but I can decide that when I am, I’ll be ready. Ready with a list of goals to achieve and dreams to strive for.