The FibroTroll interferes with every aspect of your life. He robs you of sleep, takes away your health, independence, energy, job, balance, and your social life.
It’s hard to explain to someone who doesn’t have a chronic illness. It’s really difficult for most of your family and friends to really comprehend how hard it is to be sick 365 days a year. Good days mean I can go to a function, but some days walking from the bed to the toilet is about all I can handle.
Even on a good day, I always have to think about the FibroTroll.
- What time of day is the event? Personally, I know that an evening event is going to be much more difficult for me to make, and if I do, it’s going to use up more energy than at other times of the day.
- How long is it expected to go for? An all day event is generally not an option for me. But if I know I can go somewhere and lie down in a quiet dark room in the middle somewhere, then I might be able to manage.
- How much prep do I have to do? Hair and make-up for a wedding is more involved than putting on some sunscreen and a hat for a BBQ.
- How far to I have to travel? Some days the nausea is worse than others. Most days 10-20 mins in a car is ok, and it’s only longer trips that trigger the nausea. Sometimes, I’m nauseated from the moment I get into the car until 30-60 mins after I get out. Plus travelling uses up energy. Even when I’m just a passenger.
- What sort of temperature is the venue likely to be? Many people with Fibromyalgia have issues with thermoregulation. In my case, I get cold very, very, easily. If it’s summer, then I have to consider if the venue is air-conditioned. On the rare occasion that I go to see a movie, I wear jeans, enclosed shoes and bring a cardigan – even in the middle of summer. I always have to be careful not to get too cold, or I will trigger a flare.
- How loud is it going to be? Is it in an enclosed space with loud music? Or outside where joyful squeals of children will be diffused? I take earplugs to the cinema with me to dampen the noise. Too much noise stimulation triggers a sensory overload and I will run out of energy much faster than when there is less or no noise. Also, when there’s loud background noise and I am trying to have a conversation, it takes more energy to project my own voice.
- Will there be much walking or stairs? I have to allow extra time for even a short walk from a car park. And stairs – I absolutely have to bring my cane. This generally comes with me anyway, but stairs make it a must.
- Will there be much standing up? If the entire function is going to be sitting down, and the car park is nice and close, then I might be able to wear some cute kitten heels. Otherwise, I have to wear flats. (Which is most of the time.) I haven’t worn heels in years.
- Can they cater for my dietary requirements? The answer to this is usually no. I don’t expect most people to go to the level of effort required for my issues. If it’s at a restaurant, often if they have said yes they can, it turns out that the food is either bland and boring and I get to pay extra for something that I can make better myself, or they got something wrong and I end up with an IBS attack a few hours later. So most of the time, I bring my own. This again uses up more energy. I have to plan and pack my food. I have to keep it cold and/or work out how to heat it up and I have to make sure I bring enough so that I don’t go hungry. But it’s better than eating something that makes me worse.
- Is it at a time of day when I have to take medications or supplements? If yes, can they wait until I get home, can I take them early, or do I have to bring them?
And that’s all the things I have to think about if it’s a GOOD day. In some ways, there are less things to think about on a bad day.
- Can I get down the stairs and back up again? No. Well I’m probably not going then.
- Is it a wedding? Yes. Oh shit. Take the meds that will give you a short boost, but make you worse, have a cup of coffee and try really hard not to think about how much worse you’ll be tomorrow and for the next week.
It’s hardly any wonder that many people with fibromyalgia end up completely cut off from friends and family. Most of the time I’m pretty lucky with my family.
For example, for my Mother-in-law’s big decade birthday this year, we had a small but fancy dinner. We hired a private chef, who easily catered for my dietary requirements. He came and cooked and served a three course meal and cleaned up afterwards. I cannot recommend Pierre highly enough.
It was absolutely delightful. Everyone came to our house, and I hardly had to lift a finger to set up with all the willing hands to help. I could see what was going in my food – and apart from eating too much, there were no unwanted side effects! There was no travel, hardly any walking or standing, I could lie down when I needed and even though no-one rushed out at the end, I was still in bed by 10pm!
Other things add to the difficulty. Many of our friends are reproducing. They are creating their own gorgeous little armies of mini humans. Our house is not child proof and this makes it really hard. I struggle to get out to see them, and they struggle to get out of the house with young kids and then have to monitor them if they come here. So there are many of my friends who I just haven’t seen for years. I worry that their kids will be in high school before I get a chance to catch up with them! And this is extra sad as I can’t make a mini-me of my own.
The FibroTroll really doesn’t want me to have fun or to nurture relationships. The only way I’ve worked out how to pre-pay the toll even a little is to have people come to my house. This means no travel, no packing food, no walking or stairs unless I go down the stairs at my own house and I can rest right up until people turn up. But that doesn’t work for everyone.
I wish there was an easy answer to this dilemma. But there isn’t, so I have to keep paying the FibroTroll.
