The Lighter Side of: Rollercoaster Illness

As we all know, many illnesses that have inflammatory aspects are often rollercoaster rides.
We can wake up one morning and feel horrendous, requiring to crawl to the washroom, unable to stand or even sit up straight, vomiting at every turn, and hoping that lying in bed all day will dull the pain. Then, an hour later, the pain has subsided, the nausea has almost disappeared, and have a sudden burst of energy.
Every hour is a question mark. Hell, every minute is a question mark. Sudden internal muscle cramps or inflammatory fits come out of nowhere. We can feel decent one minute and we can hit the floor the next. It is an entire guessing game. The pain persists, but at varying levels. The inflammation continues, but hits at random moments. Sometimes it is constant, but many times it is intermittent.

The Lighter Side of rollercoaster illnesses is that you learn to take the good moments for exactly what they are: random and temporary, but they still exist and they are GLORIOUS.

That means that the image remains difficult to understand. If I feel awful in the morning, cancel plans, and then feel decent a few hours later, I may try to re-make plans or I may do something else. No matter how I decide to use that time, you better believe I am going to use that time. It may not always seem appropriate, it may even appear contradictory, but it is what it is.
SO many people with chronic illness have more bad days than good. Not always, but at some point, the bad days are far more frequent than the good or even somewhat decent. We learn to take advantage of those moments, no matter how often or how infrequent they become.
Use those days.
Remember that you may not always maintain those good or decent moments.

A Great Day

A really tough concept to explain is how you can have a really wonderful day while also being in terrible pain.

For those who do not live with severe pain 95% (give or take a few), it is really difficult to imagine someone laughing and smiling and making jokes if they are in excruciating pain.
It seems mutually exclusive.

It is not.

As tough as it is to picture, it is completely possible to have a really enjoyable day (several of them, in fact), full of fun and laughter and love and playfulness and genuine happiness ... while ALSO being in nearly unbearable pain.
Even sitting on death's doorstep, wondering when the pain is going to get bad enough to make you pass out, sometimes you can still crack a joke.
Every ambulance trip I have ever taken has been a mixture of vomiting, vomiting blood, difficulty breathing, and sometimes even worse, plus a couple of random jokes. On my absolute worst days, something will happen that makes me crack a smile.

For people who have chronic conditions that include severe pain, the pain is an every day occurrence. Don't mistake that for 'getting used to pain'. We get used to its presence, but sharp stabbing pains are nearly always sharp and stabby. Just because they happen every day don't make them feel less intense... we just get better at concealing how it affects us.
And just like any run-of-the-mill every day situation, there are going to be good and bad days.
So if you take someone who is in severe pain every single day, some of those days are going to be better than others.

Further to this whole idea - if someone asks me how I'm doing on a particular day, if I say:
"Today's been a really good day" or "I've had a great day today"... that doesn't necessarily have anything to do with feeling any better. Good health days and good days don't always go hand in hand. Good health days definitely have a better chance of being good days as well, but having a 'good day' doesn't necessarily mean that I 'feel better'.

Unfortunately, it is one of those situations where people won't really get it, unless they get it.
And I don't wish that on anyone.
I just hope that - just like if you study something but do not practice it - that people can attempt to learn and comprehend the theory behind it, even if they will not experience it first-hand.

Don't judge someone's level of pain by their smile. Or by their enjoyment of life. And, as always, appearing healthy doesn't mean squat.

I have more bad health days than good ....
But I have far more good days otherwise than bad.
It's kinda neat actually.

Appearances Are Never What They Seem

I decided to post these photos to show people how things can look compared to how things really feel.

These photos were taken on the same day.

In the afternoon, I sat on a higher stool and provided live music at East Village Junction. I had a TON of fun and completely loved it, but that's doesn't mean I wasn't in pain.
The night before I had actually gotten so nervous that my throat swelled up to the point of affecting my breathing, so I required an extra injection that, luckily, fought off a more severe reaction.
Then, that day I had to be so extra medicated that it affected my ability to stay focused. Hopefully not many people noticed, but I messed up the lyrics and even entire verses just because my cognitive function was impaired. Then even with the extra medication I reached about 9/10 pain halfway through the performance.
But I know that it's one afternoon. It is a couple of hours on one day, maybe 4 times a year. Maybe. So, for me, it's worth the horrendous pain.

Now, after the performance is the photo of me in the wheelchair. The first day (other than at a hospital) that I relented and used a wheelchair just to get around. I was determined to hit the grounds at Stampede with Rj on his day off, so we went and I used a wheelchair.

In the photos you see smiles and singing and I look almost unstoppable.
And it WAS the best day this year so far. It was an amazing day.
What you don't see is the fallout. You don't see how much medication I was on. You don't see me bawling my eyes out unable to sleep just from pain. You don't see how my body responded to this amazing day... it basically shut down and expelled everything. I actually had nightmares that I was dead - I dreamt of heaven and hell and that I was 'crossing over'.
These great days are few and far between and are a sacrifice. I never know HOW bad my body will react, and it is a risk to do ANYTHING at all. It was a risk to go get bloodwork today. It was a risk to try reading yesterday (which increased a migraine). It is a risk every single day to step outside - the sun can make me feel worse and even walking is painful. It is a risk to do anything - and singing, once in a while, is worth the risk, but it doesn't mean that I don't suffer.

My point is - you can never tell how much someone might be struggling by how they look. Just because I am in astronomical pain some days doesn't mean I always look it. Some of my best days have occurred when I have been in astronomical pain.

I understand how people can be confused. I mean, watching me sing and then seeing me on the grounds in a wheelchair might seem completely contradictory. It's not.
Seeing me using a cane one day and then walking in heels a week later might seem contradictory. It's not.
My illnesses are rollercoasters. Inflammation results in flare-ups. Some days are better than others - it is that way for most chronic diseases.

It is possible for to have really incredible and great days while also being in mind-bending pain. 

I am just very good at hiding pain.

I can hide pain while I am on stage, I hide pain to 'act' and 'appear' normal to go out on a date with my hubby, and I hide pain for photo shoots. The pain isn't gone, it isn't better, it is well-hidden.
I have been hiding pain since I was 14 years old... and since then, apart from one weird day in 2003, I have never had any day completely without pain.

I hope that we can change the tone of voice when people say "you don't look sick".
I hope we can change it to "Wow, you don't look sick today. What's your secret?" Or "Wow, it is amazing how your body can be totally giving up and you can still look so healthy".
Basically, once you take the judgement out of it, add in a touch of compassion, it changes everything.