Being Chronically Awesome

Anyone who has a chronic (or invisible) illness will be able to tell you how much it sucks. Chances are, though, that you will have a hard time believing it. Chronic illnesses, in most forms, aren’t visible to the naked eye and can be extremely hard to diagnose and treat, so those lucky people with no experience in the matter just don’t get it.

I started off getting adolescent onset migraines when I was about twelve. The pain would be so intense that I would have to miss school and spend days at a time in a dark, quiet room, pumped full of pain killers (most of which did absolutely nothing), just waiting for the torment to end. My pediatrician at the time only had so much experience with that type of headache, and he did the very best that he could. I can’t remember how many preventive treatments we tried, but for a long time it seemed like I was just destined to suffer through it.

(For those that don’t know a lot about migraines, a migraine differs from a regular headache in a few key ways: regular headaches are caused by the constricting of blood vessels in and around the head, while migraines are thought to be caused  by the swelling of those same blood vessels. For this reason, a lot of the medications that work very well for ordinary headaches have little to no effect on migraine pain. Migraines also come with a wide range of other symptoms: nausea, vomiting, sensitivity to light, sound and smells, blurred vision or loss of vision in one eye, numbness and tingling in the face and aura, a visual sensation that usually occurs before an actual migraine attack. I usually experience all of these symptoms when I’m having a bad day. Migraine usually only occurs on one side of the head, while a regular headache can occur all over.)

Now, most people who start to experience migraines during their adolescent years start to see some relief as they enter high school. This wasn’t the case for me. My pain only started to get worse. In fact, I was missing so much school during my grade ten and eleven years, that I pulled out and started homeschooling all my core subjects after the Christmas break. This meant that I did most of my work  times for those two years. Luckily, in grade twelve, I started at home from the very beginning and found the course load much more manageable.

What I didn’t find so manageable was missing out on the everyday experiences of being in school. I still had a group of friends, but not being there meant I wasn’t directly in their line of sight. I was often overlooked when parties and outings were happening, and this, as you can imagine, did wonders for my already faltering self confidence. I was dealing with the stigma of being the “sick girl”, and adding the feeling that my friends were forgetting about me didn’t help things at all.

This lack of confidence didn’t help me going in to college. I wasn’t great at meeting new people to begin with, and I decided to try and hide the fact that I was sick from anyone I did establish a relationship with. It just seemed easier that way, and after taking a year off before enrolling in my first college semester, I seemed to be doing well enough to pull it off.

I was very mistaken. The full time course load I had taken on was brutal. After being at home and being able to set my own schedule, having to get up and be on time for class every day was killing me. My insomnia (also experienced since age twelve of so) wasn’t helping matters. Anyone with chronic insomnia will tell you that the more you worry about getting enough sleep, the less likely it is to happen. Naturally, my course work began to suffer, and after accumulating just over two years worth of credits, I had no choice but to drop out.

This felt like another phenomenal failure in my life. It didn’t matter that I had a steady boyfriend. It didn’t matter that I was living away from home for the first time. Those things just seemed like happenings, not accomplishments, and being unable to finish school, not knowing if I would ever be able to finish, was devastating. I probably would have felt a little better about things if I had known what was coming next.

Not long after my twenty-first birthday, I started having some alarming new symptoms. Whenever I got really bad headaches (we’re talking a 7.5+ on the pain scale) my right arm and leg would start to go numb. I was used to the facial numbness, and for a while I thought the numbness down my entire right side was just an extension of that. I was very wrong.

One day, I lost complete feeling in the right side of my body and collapsed on to the floor, unable to move or speak. It was the most terrifying thing I had ever experienced. My boyfriend was asleep, I couldn’t move or talk, and it was minutes before I could even get a guttural scream out of my mouth. By the time my boyfriend woke up and found me, I was in panic mode. He didn’t know what was happening, and called 911, telling them that it looked like I was having a stroke. Until those words left his mouth, the thought hadn’t even occurred to me, but there it was. I was in my early twenties and could be having a migraine related stroke. Perfect.

The EMTs who came to the apartment were very nice. They had no idea what was happening, but were compassionate none the less and I ended up in the emergency room at the Royal Alexandra Hospital. After much waiting and much questioning by clueless doctors, I had an MRI (which showed nothing) and was sent on my way. Yes, they gave me something for pain management and some fluids, but it still seemed like a woeful waste of time.

It took several more ER visits before I was hooked up with a neurology referral. None of the intervening time was pleasant. I was having to walk with a cane after my “episodes”, as it was taking several days for me to regain full strength in my right leg, but as it turns out, the wait was worth it. Dr. Pokroy, my neuro consult, had an answer.

I had hemiplegic migraines.

Oh boy! A new, super complicated diagnoses! Was it scary? Absolutely. It was also a relief. Getting an answer, finally, was a huge relief. I wasn’t crazy, I didn’t have some undiscovered malady, I was just way more sick than we originally thought. So, what does having hemiplegic migraines mean?

In addition to all the goodness of an ordinary (for lack of a better term) migraine, I had the added bonus of having the swelling and spasms in my blood vessels be so bad that they actually cut off the blood flow to my brain. This is what caused the lack of response in one side of my body. The more severe the spasms, the longer it would take to recover. I was one of the worst cases my doctor had ever seen, and it also meant a huge change to my medication routine.

One of the only things able to kick my pain in the ass, Imitrex, was off the list, as it severely increases the risk of actual stroke in HM patients. Perfect. My best source of relief was no longer an option. In fact, most of the medications I had been taking were no longer on the table.

After some tweaking, we finally came up with Topamax, an anticonvulsant also used to treat migraines. The side effects were not great (although a lot better than some of the previous drugs we had tried), but I was willing to give it a go. I needed to get over this. I needed to get on with my life.

Unfortunately, that wasn’t going to happen any time soon. Like many people with a chronic illness, I had a lot of trouble keeping a job for longer than a year. In fact, a year seemed to be my limit, and that was when I found a particularly understanding boss. If I didn’t have the luxury of a great boss, I may as well move on. It wasn’t until a particularly bad downward spiral that I realized something needed to change. I had always hated the idea of not working, of not being able to contribute financially to my own life, but there was no way I could do it anymore. After a lot of discussion with my mum, we decided that I needed to take some time off. Pushing myself to be something I just couldn’t be at that time wasn’t helping anyone.

You may be wondering what happened to the boyfriend. He moved up to Fort McMurray for work (not the oil rig kind) and after a brief stint trying to make a go of it up there with him, I moved back to Edmonton. The stress of being in a new city, not having any friends and not even having our own house was too much. My illness flared up, I had a mental breakdown and I moved back home for a while. These events were all instrumental in the decision to take a step back from the work force and do some healing. The boyfriend was never keen on the idea, but he was never really keen on my illness in general. He was supportive because he felt obligated to be supportive, not because he really wanted to be there for me. That is no way to operate a relationship, and it led to our eventual split.

I was off work for 1.5 years. In that time, I was on income assistance while applying for the AISH (assured income for the severely handicapped) program. This is a provincial program that guarantees money to those with severe disabilities. Unfortunately, during the application process, I came across the same problems that those with invisible illnesses have everywhere. On a good day, I don’t look sick, so during my interview I didn’t really know what to do to convince the intake worker that I needed this program in my life. My initial application was denied, and this was another blow for me and for everyone struggling with illnesses like this. I was ready to pack it in, but my mum would have none of it. She talked to the social worker where she works and got some advice on how best to approach the appeals process. Armed with new letters from three of my doctors, a new essay written by me and a fresh surge of confidence, we appealed. And won.

I went from getting less that $500 per month on income support to over twice that much. It felt like a whole new start for me, and it took a huge amount of pressure off of me. I didn’t have to struggle to pay my bills on time. I could buy as many groceries as I wanted, without having to ask my parents to pick me up some of the more expensive items. I even got to buy myself new pants. The best part, though? I had full medical coverage for all my medications, any ambulance trips I needed in the future… everything was covered. Without coverage, my pills would have been over $200 every two weeks. Now, I didn’t have to shell out anything for the meds that were keeping me, if not well, stable. I could actually focus on getting better.

Eventually, I reached a point where I just couldn’t sit at home anymore. I decided that it was time to get back out in the job market. As terrifying as the prospect was, I knew that if I took it slow and didn’t push myself, I would be fine. Luckily, I found the best job I ever had. Eddie Bauer offered be an opportunity to flex my retail muscles and expand my knowledge base like no other company ever had. My co-workers were the best and most supportive people I had ever had the honour to work with, and I ended up learning a whole new skill set during my time there.

Several other things happened during that time. My old neuro realized that he didn’t have anything else to offer me and decided to refer me on to someone else, someone who had a little more expertise in dealing with migraines. I started seeing Dr. Brad Stewart, and haven’t regretted that for a minute since. I also have to give props to Dr. Pokroy for realizing he couldn’t help me any more and letting me go. It takes a special kind of doctor to be able to pass things on and not keep trying when they have no where left to go.

After six years and a failed engagement, I split from my boyfriend. It was one of the hardest things I’ve ever had to do. You get to a point in a relationship where things just get comfortable, and even if you know it’s not the best thing, you’re afraid of moving on. I had spent most of my twenties with this man, so leaving him was a huge step for me, but it had been a long time coming. Was I worried that I wouldn’t find anyone else that would put up with my illness? Absolutely. But, instead of just being worried, I was also hopeful that I would find someone who would love me, illness and all, and not care for me out of some weird sense of obligation.

When I met that person, my ex hadn’t moved out yet, and that was stressful beyond belief. He must have liked me, though, because he stayed and put up with the crazy ex in the house and my semi-attachment to him in a way that I couldn’t quite comprehend. Then, being the idiot that I am, I broke up with him because he just wasn’t ready for the things I wanted. For the next five or so months, I kept kicking myself in the ass for not waiting until he was ready, but things have a way of working themselves out. I texted him. He came over. We started seeing each other again. Now, we’re married and waiting on our first baby to be born.

Am I still at Eddie Bauer? No. After almost three years(!) there, I chose to leave again because I was once again having a decline in my health. This time, though, there were a few differences. I had Shawn’s complete support in the matter. He wants me to be healthy, and if that means not working, that’s okay with him. He also wanted me to be healthy and happy for our wedding and honeymoon. He’s the type of guy who will do anything for me, just like I’d do anything for him, and he doesn’t do it because he has to. He loves me and he wants to take care of me, and that’s really what I was looking for all along.

So, how’s my health now? Better. I haven’t had a hemiplegic episode in a long time. I still get migraines, which is a pain in balls when you’re pregnant, but I know how to deal with them. I’m still not sleeping very well, but I know how to deal with that, too. Do people always understand what’s happening with me? No, and most of them never will. That’s really not important. What’s important is that the people in my life understand enough to know that I have been dealing with this for a long time, and I (along with my husband and my mum) know how to handle things. I’m hopeful that with the crazy pregnancy hormones, the migraines will settle down some. For some women, that happens. If not, I’m pretty much stuck dealing with them until menopause. But hey, what’s another twenty years or so? I’m chronically awesome. I can take it.

Do you know someone with a chronic or invisible illness? Here’s some advice on how, and how not to, deal:

  1. Never say, “But you don’t look sick!” This is probably one of the worst things a chronically ill person can hear. Most of our pain happens on the inside, whether it be migraines, lupus, fibro, chronic fatigue syndrome, etc. On a good day, we look like everyone else. Even on a bad day, we can look incredibly normal, so just because we don’t look sick doesn’t mean we’re not suffering.
  2. Suggestions, usually starting with “Have you tried…?” are more annoying than they are helpful. Most of us have been around the block more than once, and have tried so many things it’s hard to keep track. Yes, we understand that you’re trying to help, but let us and our medical professionals handle it. Believe it or not, we know what we’re doing. Some of these illnesses just don’t have a concrete solution.
  3. Don’t suggest that maybe we have something else. I’ve had people tell me that I might have MS or some type of seizure disorder. Not only to my symptoms not line up, I’ve been tested for everything. Believe me when I say that my doctors have probably already thought of it.
  4. If someone you know has a chronic illness and needs to talk, just listen. Don’t try to offer suggestions or fix things unless you’re directly asked. Dealing with these kinds of things can be very emotionally draining, and sometimes we need another set of ears (one that we feel like we haven’t worn out) to talk to. Be honoured that the person trusts you enough to open up. It can be hard talking about this with anyone, because there is the constant fear that someone will think you’re exaggerating, faking or trying to get attention. We’re not. We just want a friend.
  5. Try not to constantly ask “How are you feeling?” When you get this question from more than one person, several times a day, it can be taxing. The response that starts coming out is usually, “Fine.” It’s generic and it stops people from asking awkward questions or making suggestions.
  6. If the person can’t work, NEVER say something like, “Well, you’re so lucky you get to stay home all the time and ______.” No, we’re not. We want to be working, we want to be productive. Most of the time, if I’m at home with a migraine, I spend all my time trying to sleep. There is no TV, no movies, no video games, and certainly no housework. I would much rather be healthy and able to hold down a job that stuck at home doing nothing.
  7. This one is going to sound really petty, but if you know someone who has chronic insomnia, don’t tell them you’re tired because you chose to stay up all night or because you only got six hours of sleep. That person will be secretly seething with rage and trying to remember the last time they got six solid hours of sleep, or stayed up because they chose to. This is a hard one because stuff like that slips out in conversation all the time, but try and finish the thought with something like, “I feel so rotten right now, I can’t imagine how you’re still standing!” Like I said, it’s petty, but it’s a pet peeve of mine.
  8. Treat them normally. One of the worst things was going back to work after a few sick days and having people treat me like I was made of glass. Customers were particularly bad for this. If they saw me with my cane, a lot of them wouldn’t let me start fitting rooms for them because they thought it would be too much. Honestly, if I couldn’t do my job, I wouldn’t be here. My boss was always the best. She never gave me any special treatment because she knew that if I needed help or special consideration, I would tell her. Treating the chronically ill like sick freaks makes us feel like sick freaks. Don’t do it.
  9. Don’t talk about someones illness with other people. It’s not yours to talk about. I have this issue with my mum sometimes. I get that, with her, she needs to talk about it someone, but I needed to ask her to be selective about who she talked to. For example, talking to my grandma was never a good thing because then i get coddled. I’m almost thirty years old. I don’t need to be treated like a sick infant. My aunt, on the other hand, won’t bring it up and won’t ask me about it unless I take the lead, so telling things to her is a-ok. This is ind of a common sense thing. Don’t talk to others about things that aren’t yours to tell.

Living with this has taught me many things: patience, strength, perseverance and, surprisingly, optimism. Yes, I have bad days, just like everyone else, but it’s really important for me to keep as positive an outlook as I can.

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