It’s taken me a while to get down to writing this particular blog post, mostly because I don’t want to come across as a whinging brat, but also because I don’t particularly like dwelling on the negative. I’m more of a make-life-work-with-what-you’ve-got type of gal.
But the other day, I came across this very brave story, and it set me thinking. In a way, I guess, I actually ought to write this, if only to raise more awareness on Ulcerative Colitis and invisible disabilities in general.
Fair warning: if you’re after an upbeat post – stop reading now, this isn’t it.
OK OK, if you’ve got this far, fair chance is you want to know what my superpower is – well it isn’t the one I wished I had, that’s for sure (duh: teleportation). Nope. But it has served me well over the years and it really is a super power, as in, you need lots of power to make it happen. I’m talking of:
making everything seem ok on the outside when it really isn’t on the inside
Yup, I have that down to a T. So much so, I’m going to name it, yes, that’s only fair. How about: The Power of Make Believe. I’ve always been good with story-telling, and retreating to fantasy worlds has been a gift of mine ever since I was a kid (compounded by the likes of C.S. Lewis, Douglas Adams, Philip K. Dick and Terry Pratchett, of course). Well, it sure has served me well in this phase of my life. So let me elucidate further – here’s what Make Believe has me hiding from most of the people I come across on a daily basis:
- Sleepless nights, disturbed by several bathroom visits, which see me spending an hour in there at a time, losing blood, and in pain.
- Chronic fatigue – no, I’m not tired, I’m not exhausted, I suffer from chronic fatigue which means that no matter how much you rest, you simply cannot recoup the energy needed.
- Anemia – serious blood loss, at times requiring blood transfusions.
- Excruciating joint pain – so bad, that the other day it felt like parts of my body were being mangled in a machine and just left there, no fix offered. Just last week my husband had to carry me to the bathroom because the pain in my foot was so terrible I simply couldn’t walk (note: I have a VERY high pain threshold).
- Constant worry over whether a bathroom will be available and if so, will I make it on time?! (I haven’t at times, in fact.)
- Taking SERIOUSLY strong medication that has very serious potential side-effects; essentially, it’s a form of chemotherapy that intervenes on a biological cell level. In my case, these cutting-edge meds, didn’t even work, even when I was given off-label, clinical trial doses (which meant that the risk of the side effects shot through the roof).
- Being on and off steroids for the past 8 years, with all that accompanies that – mood swings, insatiable appetite, weight gain, changes in appearance, risk of osteoporosis, difficulty sleeping (oh joy, as though the loo visits weren’t enough!), cataracts, proliferation of body hair (in my case, it was the face), diabetes… shall I go on?
- Developing connected conditions in tandem with UC, such as rheumatoid arthritis.
- Having a very low immune system. The medication I am on essentially acts by zeroing my immune system because it is attacking itself. This means I am susceptible to practically everything and a light cold in someone could mean a stay at the hospital with bronchitis or pneumonia for me (happened in October). In fact, this happened because of a cough I caught.
- Having to rely on others for very basic things, like a run to the supermarket. My husband has also had to make himself available to collect me from the garage where I park to drive me to the front door at work (this would be a quick 7 minute walk for others) because I otherwise would not make it. And there have been days when it has really been touch and go.
- Making sure a bathroom route is worked out before every trip, no matter how short it may be.
- Panicking when appointments are set for the morning – which is when I’m worst.
- Sadness – at the multitude of things I’ve had to give up. Saying this condition doesn’t change who I am is a blatant lie and a disservice to me. Of course it changes who I am, I’ve had to stop doing some of the things I most love in this world.
- Worrying – about the toll that my condition is having on my young family. Just this morning my three year old begged me to go to his open day and told me “Don’t worry Mama’, we’ll find a toilet for you and you can sit down on a chair, I’ll ask Ms Margaret.” Note: pointing out – he’s THREE.
- Worrying – about how I’m going to get through another work day and perform to the standards I wish to perform at.
- Worrying – about what the future holds.
Now condense all of the above into one person, on a daily basis. That’s who I am at the moment. So when you see me smiling, if I ‘look’ good, just remember it’s all the power of Make Believe because underneath my smiles and laughter, well, this is what there is. And this and more is what so many others out there with invisible disabilities have to go through on a daily basis. But soldier on we must, and soldier on we will. Just give us a smile and a hug when you next see us. We’ll continue to power through.