I guess you could say that I have the interests of an average 19-year-old girl. I like to read, watch makeup tutorials, and binge watch series on Netflix. I also enjoy hanging out with friends and socialising, when I have the energy to. Having struggled with the chronic pain of Fibromyalgia since childhood has shaped my adolescence in many ways.
An Average Girl
There are so many things that I wanted to do but couldn’t. I wanted to play sports throughout high school, I wanted to go overseas for a gap year after graduating, and I wanted to study Speech-Language Therapy at university once I got back. As a result of my chronic pain, none of these things was meant to be.
While this upsets me, I do everything that I can to ensure that my chronic pain limits my day-to-day life as little as possible, especially my social life. Besides just hanging out, something I love doing with my friends is going out dancing. As you can imagine, dancing (or more like swaying side to side, in my case), is exhausting.
Going out for a single night of dancing can leave me flaring for up to a week afterwards. Another thing I like to do, that I don’t do nearly as often as dancing, is going to the theme park. This can easily become a full day affair. The constant walking along with the jarring of the rides can leave my entire body aching for days.
Some people may scoff at my enjoyment of these activities. After all, why would I do something that causes me pain? The answer is this: everything I do causes me pain. I’m in pain every second of the day. I’m in pain while I walk, I’m in pain while I sit, and I’m in pain while I rest.
When pain and/or fatigue rules your life so thoroughly, it can become a goal to not let it stop you from having fun. It’s almost as if I have something to prove to myself; that I won’t let the pain take my ability to have fun away. And luckily, it hasn’t. However, having fun with chronic illness can often cause side effects.
The Pain In The Moment
For me, the pain that I experience in the moment of doing an activity can definitely put a damper on any fun I may be having. As the day develops, my pain slowly gets worse. Having pain in one area is bad enough, however having pain that is spread throughout your entire body can be so incredibly overwhelming. The pain can sometimes result in me unconsciously becoming very grumpy, which can ruin the rest of the day.
Not only does pain impact any activities I take part in, but it also prevents me from doing specific activities that I would otherwise want to do. Despite me enjoying being active (it’s the resulting pain that I don’t enjoy), I can’t take part in activities such as hiking and kayaking because they raise my pain to unbearable levels.
Of course I often I push myself to do activities that I know will result in heaps of pain, however, it becomes a fine balance between being able to barely cope with the pain, and curling up in a ball, moaning as pain consumes me. I like to avoid the latter option.
Another symptom that can ruin my fun is brain fog. For me, brain fog is very distracting, especially if I’m out trying to have fun. I feel like no matter how hard I try to concentrate; I can’t think or talk straight. Most of the time I have brain fog I feel like I can barely string a sentence together, that I’m talking nonsense.
When the brain fog is at its worst, I feel like my mind and mouth are numb. I can’t bring myself to speak, no matter how much I want to. I also can’t process what people are saying to me easily. Since this level of brain fog only occurs when I’m in very extreme levels of pain, I normally have warning signs leading up to this and can get myself home before I lose the ability to communicate.
The Recovery Time
Depending on how much energy I expend on an activity, my recovery can take anywhere from 3 days to an entire week. If I continually exhaust myself day after day without resting for a few or more days, I can be left feeling ill for weeks. I have learned this the hard way.
Every person with chronic illness has different symptoms that they experience during their ‘recovery period’. These symptoms can include muscle cramps, fever, flu-like symptoms, migraines, and of course likely the most common one, fatigue.
Recovery for me usually consists of lying in bed, too tired and too sore to get up for anything that isn’t imperative. I get an ache that is somehow both dull and sharp throughout my entire body and having such widespread pain only adds to my exhaustion.
So far, besides medication and rest, I haven’t found anything that helps with this kind of pain once it’s occurring. As a result of this, whenever I am planning something that I know will leave me flaring, I try to make sure that I don’t have any responsibilities (such as exams) or events for at least three days after the activity. That way, I can recover without missing out on something important or having to push myself.
I worry that whenever I’m seen out having fun, or whenever I post a picture of myself having fun on Instagram or Facebook, that people may see this as evidence that I’m not sick or that I’m making my symptoms up. In some countries, the social media accounts of chronically ill people are being used to determine whether or not they are “sick enough” to receive disability cheques from the government.
I find this ridiculous as I’m more likely to post a photo of myself on the rare occasions that I’m dressed up to go out, then I am to post one when I’m at home, barely able to move because of pain. Going out and having fun when you have a chronic illness a bit of a catch-22.
If chronically ill people don’t do enough, then they’re called lazy. If they do too much, then they aren’t sick anymore. Having a chronic illness and going about life is hard enough without having to face the judgement of others.
How To Have Fun With Fewer Side Effects
When I want to spend time with my friends but I’m flaring badly, I invite a friend or two over for a sleepover or a movie and some drinks (the legal drinking age is 18 here). It may seem kind of juvenile, but I will never get too old for sleepovers. This way, I can sit on the couch or lie in bed while catching up with besties. This is also a great time to catch up on Netflix movies.
If there’s no way to avoid a lot of physical activity that day, I make sure to keep my medication on me in case my pain levels become high. Keeping your medication on you guarantees that if you need it for whatever reason, you have some on you.
Another tip for high activity days is if you are easily exhausted, don’t be too self-conscious to use a walking or mobility aid. My walking aid of choice is a walking cane, since it’s less harsh on my shoulders and back then crutches. Since the common stigma for walking canes is that they are exclusively for use of the elderly, I used to push myself too far because I was worried I would be judged for using a walking cane.
If the place we’re attending has a wheelchair that can be loaned out, such as a mall or a zoo, I will borrow the wheelchair if I know that I’m going to have a rough pain day. I don’t have a wheelchair (for ambulatory use) of my own yet, however, it is definitely a goal of mine.
If you’re heat/sun sensitive, try to choose activities where you can spend a lot of time in the shade. If sun hats and sunglasses help, make sure to keep some on you. Also, no matter what your symptoms are, keeping hydrated is important for your general daily well being. Make sure that you keep a bottle of water on you if you’re going to be out of the house for more than an hour at a time.
Having fun when you have a chronic illness can be very difficult, however, it is so important. It is easy to think that chronic illness takes the fun out of life, however, that isn’t the case. While I’m in pain every second of every day, I still aim to make the best of the life I’ve been given.
About The Author
Amy Clements is a 19-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.