Friday 4th August 2017
Today was mostly spent at the hospital
Since before Leggedon I’ve had medical issues that I’ve struggled to get doctors to take seriously. Whilst I understand that everyone thinks their metabolism is wrong, I started piling on weight in my mid-20s around the same time as my Vtiligo started. My food hadn’t changed, and whilst I wouldn’t say I was eating particularly unhealthy for the weight I put on I wasn’t eating that healthy either.
Everytime I highlighted this I would be told I ate the wrong thing, or ate too much of the right thing, or not enough. If I admitted that I ate the occasional bad thing, I would be told “well that’s your problem then”. If I didn’t, I wasn’t being honest with myself.
Roll forward to leggedon, and I was forced to go onto an ultra low-fat diet due to medication. It severely restricted my food options but the weight piled off. I lost about 10 stone in a year and the only real difference was that I’d restricted fat.
I came off the tablets but it left my stomach in a bad state. If I tried to eat “normally” I’d be ill. My weight massively fluctuated (loosing as much as 8lb overnight one time), I suffered some internal bleeding, and I was left with constant stomach cramps.
The mountain that was Leggedon had made me find my strength and whilst I felt shit, I carried on, refusing to let it stop me. But I came to the conclusion in early 2016 that I really did feel shit and needed to do something about it. I’d also noticed some darker patches on my body and discovered that when I did drop sudden rapid weight I would sweat profusely from those patches.
I started following good nutrition and it certainly improved my health. I went from eating not bad, to eating perfect. I’ve since seen the diets of Olympic competitors and whilst I would say that currently my diet probably only scores a 9.5/10 theirs is more a 9.1/10.
My triceps had atrophied (despite the swordfighting) and I had been undereating. In 2016, I had more comments about my body transformation than I did when I lost the 10 stone. I literally changed body shape, going from someone who was podgy into someone who was muscled.
I’d like to be leaner, if I’m honest. Loosing so much weight does mean that the stuff that remains tends to pool and become very stubborn… but I’ve set myself a challenge to get a six-pack… because it’s next to impossible and the impossible challenges are always the most rewarding.
But it was the dark patches that over the course of the last year that have lead me to see an escalating skill of specialists until yesterday when I saw a panel of doctors.
In many ways, it’s been quite stressful. There was some genuine concern at the beginning of the year that the patches were the sign of something very serious in progress with a high mortality rate. I’m actually quite proud of how well I held that together. They’re pretty sure they might not be as serious any more, and if they were I’ve probably dodged the risk. Possibly.
As you can probably gather the outcome of the panel was inconclusive. I now basically register with at least 3 different skin tones (and yes, it bothers me although not as much as it did) all of which seem to sweat differently. Some of it may be spreading, some of it may not, but when three doctors of a level that they are accustom to identifying one in a million type conditions all say “I’ve never seen that before” it’s a bit hard to know how to take it.
On the plus side… probably not going to die, which is good. How close I came and whether the nutrition reversed some things (My darker patches became very scaly at one point and only reverted back once I started the nutrition) or is holding things at bay, I honestly don’t know.
I’ve also got to a stage where I think I can pretty confidently say that I’m not making things up. They listened to what I said and we actually had a discussion about symptoms where I felt I was treated as an adult rather than a patient.
But I’m still very, very touchy about the subject. It’s impacted my confidence greatly over the years. Someone even makes a well-intentioned joke about it, I’m likely to take offense and call them something even I consider offensive.
I also get really, really irritable when well-meaning people try to point to remedies and treatments. I know people are trying to be helpful (and I can be guilty of this as well) but telling me about a diet or the latest fad supplement is invariably going to be something I investigated years ago and not a miracle cure.
We’re also no closer to understanding what it is, and how to lessen the impact. Given how healthy I eat, and how much exercise I now do, I should be an underwear model. Not that I want to be one… but it would be nice to have some advantage come out of all this pain.
I’ve learnt that I actually have an incredibly high pain tolerance. I’m moan and grumble at a paper cut but walking 26 miles with a 6” hole in my leg isn’t an isolated incident. There are countless examples where I will go past the point of acceptable levels of pain and keep going.
It results in me sometimes not realising how ill I am. That can be a good thing, but sometimes my body needs to rest, and I’m bad at identifying that, pushing and pushing myself until I do damage.
My condition(s) are also largely invisible. People around me forget I’m ill, and I find it difficult to describe what’s actually the matter with me. I don’t let it stop me, but sometimes I have to manage things in my own way, and it can sometimes be difficult to explain that I’m doing this for health reasons rather than just being obstructive or difficult.
I’ve long taken ownership of my health and everything that’s happened since has shown me that it was a wise decision. But I’m still no closer to identifying a treatment or cure and we’re pretty sure there’s probably a couple of conditions interacting with each other in a very unique and undocumented way. At least, I’m not going to feel bad saying that I don’t feel well at times. I just need to learn to spot it.
If you want to follow more of my journey, then be sure to check me on my social channels. Likewise, if you’d like me to expand on any point mentioned above, please say so in the comments.
- Twitter: @figures
- Facebook: https://www.facebook.com/adrianfaulknerwriter/
- Instagram: AdrianFaulkner
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