Guiding was what gave me strength in those moments. Yes, I had an unknown illness, but I was still Tawny and it didn't matter to the girls what else was going on in my life as long as I turned up every week. I missed more than one, but I just told the girls I was busy with work, as I didn't want them knowing about that part of my life.
Eventually I was given another diagnosis, a combination of "it's definitely Celiac disease, but it's also another thing called Ulcerative Colitis".
Ulcerative Colitis (UC) is similar to Crohn’s disease in that my intestines and bowel will just randomly swell up, which means I don't digest food properly, which then causes all sorts of other problems. This was early 2016, but they decided that I'd been suffering from this condition since uni, which I left in 2014.
This label of UC is never going to go away. It is always going to be there and be as big a part of my life as the Tawny Owl label. Except this one I didn't have a choice about.
This has a massive impact on my life, I've had to have awkward conversations with people at work about why I keep leaving for the loo, to the people who sit next to me when I take out all 10 tablets every morning and just start downing them as though it's normal (because for me, it is). I've had people look at me in restaurants or in public places when I was taking what felt like a pharmacy at every meal. I'm useless for every week out of 8 before I go back into hospital for my infusions, where they pump the really strong meds straight into me, which means we don't plan for me to be running the meeting that week because I can't promise I'll be up to it. I'm always in some form of low-level pain (and don't get me started about my period). I've got to be careful about every bug that goes around because I have to purposefully destroy my immune system so that it doesn't attack itself. That 24-hour cough/cold thing, yup, that'll knock me out for at least 3 days. On my best day, I'm at about 75% of where I used to be.
Today
I've just recently been told that I'm in remission which means that I'm not showing any symptoms. Even without any symptoms, it is STILL difficult. I suffer from extreme fatigue, where I simply don't have the energy to do anything and sleep isn't helping. I get plenty of sleep but I'm still constantly tired.
But through all of this, guiding has remained the one constant. It was there before I was ill, through all the medication, and at times was the only reason I got out of bed. It'll continue to be there as I work out what being in remission means for me. If I go into a bad flare and the conversation about having surgery and just removing my colon and having a colostomy bag comes up again, guiding will still be there. And in that worst case scenario? I'm already planning to have a guiding cover for the bag, sew a couple of badges onto it, and make it part of my uniform.
The short of all of this is that just because I have UC, I haven't stopped being Tawny Owl and the person I was before I worked myself into two chronic conditions. It's taken 2.5 years to get on the right medication and to realise that although I'm never going to be the same person I was before, I'm still the person who made her leadership Promise on her birthday, who was proud to hold the flag at her sister's Promise, and who used to hide sweets in her Rainbows tabard.
If you take one message away from this post; remember, you're never too busy to be ill. Uni is great and hard work but you shouldn't literally work yourself into the ground.
Learn more about Ulcerative Colitis.
If you ever start to feel overwhelmed by your volunteering roles within Girlguiding talk to your local commissioner to discuss making your role more manageable.
For further advice and information about including all girls and volunteers in guiding contact the inclusion team at Girlguiding HQ.
