I can almost say that I enjoy my infusions. Okay, not entirely, because not a huge fan of needles. This is entirely unsurprising; there are probably not a lot of people who enjoy a foreign piece of metal resting uncomfortably in their arm for hours at a time. The nurses here do a great job though of trying to make us comfortable, providing friendly conversation, coffee / tea, snacks, Wifi and squishy reclining chairs.
Last time I was in, I wound up sitting in between two dudes. To the right, a big tattooed guy, to the left, the father of one of my students (or at least, he would be my student if I could EVER get back to work). Mr Tattoos had been struggling a lot as of late with his health, and one of the few medications with which he has found success is Methotrexate, a chemotherapy drug. I myself was on Methotrexate for Spondyloarthropathy (Crohns-related arthritis). He's been on that medication for three years, and it has changed his life. For myself and Mr. Dad, we both had to go off Methotrexate within months; Mr. Dad would get nausea and fainting spells, and my liver was shutting down.
Today, a friendly punk-looking dude (who is often here when I am) shared a bit of his story with me. He's been on lifetime disability since 1984, when he was around 25 years of age. Every time Mr. Punk would try to go back to work (against the Doctor's orders), he would manage for a few months before ending up back in hospital again. As such, he was never able to really accumulate enough hours to make his disability cheques large enough. As a result, he's living off of pennies and not allowed to do any small side-jobs (such as selling art) without losing his benefits. Throw that on top of the fact that he has Crohns, and all sorts of issues related to it. For example, he suffered from perianal disease, which destroyed a nerve bundle in his hip. He has, for the most part, lost the feeling in one of his legs.
I have now been off of work for almost two years now, and I miss it so much. My return-to-work team wants to see me volunteering consistently for an extended amount of time before they will allow me to get back on a permanent basis. This sounds easy enough, but every time I try to start volunteering, I get knocked down a peg and end up needing to go back off work, then I start all over again. It's so discouraging, and my heart breaks knowing that I might be letting down my kids. I have the mental energy, the will and the creativity to be back at work, but my physical and emotional wellness don't seem to agree very often. Last time I saw my psychologist, she said quite pointedly that I need to be more accepting of the fact that I am just not well enough for things to get back to normal yet. No wonder people with IBD struggle with mental health issues so much, this thing is depressing!
When I walked in to Remicade today, the receptionist remarked on how well and energetic I appear these days. And it's true, things are so much better than they have been. I'm walking, I am way less symptomatic in my guts and I have energy. Just last weekend I celebrated walking down to the dock at the cottage on my own two feet (without walking aids) for the first time in almost two years!
I used to be terrified of striking up conversations with people I didn't know, and often have a lot of anxiety about conversational flow even with the people I know the best. Through all of my health issues though, I've learned that everyone is just as scared and lost in life as I am. Our bodies and experiences are all different. Progress doesn't always move in a straight line. The important thing is that we care for and help each other as much as we are able, and sometimes that just means listening and sharing. Your time, a smile and a bit of patience will cost you nothing, and can make all the difference in the world to someone else. We're all on this lonely road together!
Do you have any direct or indirect experiences with Crohns? I would love to hear your story in the comments! I am also more than happy to answer any questions that you may have. After all, what's life for if not for sharing?
Keep hope alive. Peace.
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