science fiction and fantasy author

Sometimes there are rainbows…


Supernumary rainbow spotted yesterday


This is a post that, frankly, I hesitate to make.

Here are some facts: I have been sick with autoimmune illness for over ten years now.  It’s a vague thing, this illness, and has been shifted around from being called lupus, to undifferentiated connective tissue disease, to seronegative rheumatoid arthritis.  Fibromyaglia is always along for the ride, as well.  Whatever it’s called, my treatment has remained the same – DMARDS, painkillers, the occasional fun dose of drugs that come with the warning of “Side effects may include death!”.

This illness was the prime reason I had to give up my career in science, any chance of working full time.  I took pills to sleep, took caffeine in a desperate effort to stay awake.  On a bad day, the most I could move was between the bed and the couch.

There has been improvement over the last decade, slow but sure.  I was able to do some gentle exercise, but the pain and fatigue was always there.

These last handful of months I was trialling a new drug for the arthritis, since it had gotten bad over the summer.  It looked good, but then looked bad, eventually causing liver damage.  I was pretty much a mess, then, with all the symptoms that I hadn’t realised were caused by that damage.  Chronic illness is fun – you can be nauseated, unable to sleep, unable to think, in pain, bloated etc etc – and you just think that it’s part of the usual mess of symptoms.

I have now been off the drug of evil for a week and a half.  I’m going to go and get my liver functions tested again today, but I’m going to be very surprised if they’re not normal now.

But, here’s the rainbow: I feel fantastic.

I’m sleeping without needing to take drugs, my mood is awesome, I’m walking between 3-4km most days (including a handful of sprints in there), I’m losing weight for the first time in years (weight I need to lose).  I’m not needing to nap during the day, and I’m actually able to work and concentrate for a decent length of time.

I don’t know if it’s even possible to challenge your body in such a way that you can “fix” autoimmune illness.  It’s entirely possible that I’ll crash and burn sometime soon.

But for now, I’m feeling awesome.

And oh Gods, I had forgotten what it feels like to have energy, to be able to concentrate properly.  I managed to work my arse off getting a short story written and submitted on a tight deadline.  I have energy to actually play properly with Liam.  I walked around the zoo on the weekend and still had energy to walk home from the train station.  I had sore muscles after that, but I didn’t crash out.

I don’t know if this will last.  I hope it lasts.  To not have to ration energy again…well, I’m probably not going to do myself any good in thinking that way, in case this doesn’t last.

But for now, I’m making the most of it.


We’re going to the zoo…


Making some changes

1 Comment

  1. Fingers crossed for you. As a sufferer from an auto immune disease myself – and with severe damage caused by a drug used to treat it that created a whole new lot of problems without actually doing anything for the disease – I know exactly what you’re talking about. Long may the improvement last. BTW I’m loving your links.

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