Troubled by my choices

What’s is troubling you today? Is it your Hidradenitis Suppurativa?

Well, if it is you are not alone. I have been managing my HS through diet for the past 11 months. It has been going really well. There have been ups and downs and even some remission.

Mostly I have avoided having any foods or drinks that I know kick my HS off – not too much fruit, no gluten, only raw dairy – no milk, limited night shades and so it goes on. 

Remember how I told you I was just about resisting temptation? Well, along came Christmas.

I fell off the wagon. I ate three or four homemade mince pies. I ate some homemade tiramisu. I ate some homemade Eton mess. I ate some homemade Panna cotta. I know, I know, you get it. Lots of puddings. That’s not all. I drank some Baileys. I had some Cadbury’s chocolate. Do you know what? I thoroughly enjoyed all of it! 

So now I am suffering. I have had recurring sores and old tracts have opened up, causing me to have pain when I walk. Along came the familiar pattern of having to change dressings whenever I had to use the bathroom. Not only that, but I have had two more spots come up – both in completely new sites, where I have never had HS before. Ever wondered what you would do if it suddenly sprouted in your armpit? Well, here it is! There is nothing I can do, except be a little sad. I have tried to be positive; however, being grateful for the amazing technology of the dressings I use and the fact I get them all free can only carry me so far. I am grateful, but I also want to cry. Is it fair that I can’t enjoy a few desserts over Christmas? It wasn’t even like I had too much! 

I know I have the option to go back to the antibiotics. It gives me comfort that if I really cannot get it back under control using my diet (studies show that willpower is finite!), I have a Plan B. Part of me feels like it is selfish to try to manage the disease using diet, as it takes so much longer to heal. I feel sad that my pain and grumpiness affects my family, when it could so easily be rectified if I just took the drugs. We could all be happy. Temporarily.

That said, the results I have seen from eating a balanced, but carefully tailored way of eating have allowed me to live a pain-free life for nearly a year, with no side-effects, no risk of immunity to antibiotics, no need to constantly balance the good bacteria in my body with probiotics. Now, if I can just get there again….

So, what is next? Well, we will see.

I give my body, my mind and my willpower another week. If the pain starts to subside and the wounds begin to heal, I will hold off on the antibiotics. If the pain continues and my quality of life continues to diminish, there will be a (reluctant) call to the Dermatologist and I will take the medication that gave me life back in 2012. 

I feel I am able to make choices about how to manage my disease and just for today, that gives me the power to say no to a croissant! 

Whatever your choices are today, remember, you are trying your best – be kind to yourself.

Antibiotics. Day 17 and all’s well.

I’m still offline at home, but will take a minute away from cleaning our ex-rental home (where we still have the net) and give another brief update.

The HS is healing. It is only leaking from one area right now, as opposed to at least 8 or 9 a few weeks ago. The Rifampicin and Clindamycin tablets are bringing me the respite I have dreamed of since my HS went haywire after the birth of my bubba 2 years ago. I am still living in chaos with the house move and my eating has not been 100% clean, but since being on these pills, I have had no major repercussions.

Unfortunately, I feel like I have been given a bit of a licence to cheat for a while and whilst I’m not going crazy eating bread or chocolate, I am having some wine, nuts and the occasional homemade pizza, with tomato and raw cheese. I just feel like the pressure is off me right now, and if I slip it won’t have catastrophic results. It is heavenly!! 

As for the side effects…well, they’re still there. My stomach is still a little dodgy, but so long as I eat the Sauerkraut and yoghurt (separately of course), I seem to be able to keep on top of it. It’s hard to discuss this without being too gross, but basically it is down to one to two bowel movements a day and they aren’t always too loose. That’s still too much information, right?!

The tablets make me sleepy and around 3 pm I usually take a quick nap – maybe 20 mins to an hour (depending on when the bubba wakes up). A new side effect is the hunger. I am pretty ravenous on these and no matter how much I eat, it doesn’t appear to satiate me. I am having to be really disciplined and eat more salad and fruit, when all I really want to do is eat my lovely homemade bread, with butter and honey! I have resisted so far and I think it’s best if I keep that off limits. There’s no knowing what will happen if I open that can of worms – especially as my HS probably wont react as much to it. Also, my usual snack of fresh coconut makes my tummy a little more icky, so I’m having to limit that, too. Mainly, I’m eating a lot of fruit – probably not great for my HS, but a damn sight better than gluten.

I still want to make a doctor’s appointment to have some blood tests for my liver/kidneys etc, but it’s just finding the time at the moment…..

I don’t think I’ll take these tablets past the 10 weeks, as I still believe that a good diet is key. It almost seems naive, but I’m hoping that after the pills, I can work with my diet to keep those healed areas closed. Who knows?

All I know now, is I can see why people try the tablets regardless of their toxicity. This pain-free living is addictive!!