As children, we spend so much time looking forward to becoming adults. You feel that life would be full of endless possibilities, once you achieve the freedoms that adulthood has to offer. You dream about your career, your future partner and where you will live. As parents now, we also encourage our children to think that way-that they can do and be almost anything, if they set their mind to it and put the effort in. We anticipate that as we get older, perhaps towards retirement age, our bodies may start to slow down and we will make changes then to our lifestyle, but it feels so far away. There may be a few small cracks or potholes in the road along the way, but nothing overly significant, or anything that feels insurmountable.
At 32 years old, I fell into a sinkhole. Sure, I had stumbled over a couple of potholes over the course of my young adult life to that point, but nothing that compared to this. As I’ve mentioned before, the pain that I identify as the beginning of my Fibro pain started increasing about a week after my daughter, Miss Five, was born. The pain intensified rapidly over the following weeks and within about five weeks, I was back in hospital.
I had no time to process the immense change that this condition had brought into my life. I had gone from highly functional and pain-free (heavily pregnant and extremely uncomfortable, but pain-free), to having to learn to live my life in a completely different way. Activities of daily living that we often do quite unconsciously-such as dressing and showering-became monumental tasks that caused pain and fatigue. I remember one health professional in those early days suggesting that I adopt a pacing technique with my activities throughout the day. The issue was that back then, I had no way of knowing what my physical limits were. Days which most people without Fibro would call low-activity days, would cause flares for days or even weeks afterward. It has been only with much trial and error, over the past five years, that I have better come to understand what my physical limitations are.
Pacing though is hard. If you have ever tried it and have a chronic illness or pain condition, you can probably attest to that. On those days that you wake up with minimal pain, it feels like the sun shines twice as bright and the air is sweeter. You want to make the most of it while you can and you push yourself too hard. You want to do and enjoy the activities that you used to be able to do and engage and participate at the same level that your non-Fibro friends are operating. But you’re not like that anymore. And that takes time to sink in. Even now, five and a half years later, I have trouble remembering that after an extended period of lower pain. (I should add here that in all those years I think I have had about four completely pain-free days.)
So, remember those grand plans you had as a kid? To climb a mountain, to travel far and wide, to work as a nurse, as a policeperson, as a dancer? Suddenly those dreams are so far out of reach that they might as well be on the next planet. All your attention and focus is on surviving (for some, not even thriving), as I was in those early days. You spend hours of time and large amounts of money just trying to reduce your pain, perhaps your fatigue and do those activities that most people do unconsciously. But you’re not ready to give up those plans yet, because you have spent 32 years (or however many years until that time of Fibro symptom onset), working towards them.
This brings me to something that some people may feel uncomfortable reading. The frustration and disappointment that my Fibro peers and I have felt with the people around us, when they don’t take the time to listen and understand what we are going through. And I know that can be hard to do! Even when talking to my Fibro friends, I am also amazed at how differently we experience this condition. But without doing that, we inadvertently cause more harm and distress to a person who is already struggling so much.
Let me give you an example. By now, I imagined that I would have two kids, working part time but rising through the ranks in a policy role in public health and enjoying lots of very active time with my kids. Doesn’t seem like too lofty a goal, does it? Now imagine having to pace yourself every single day with normal mundane activities, like going for a walk, doing housework, cooking and occupying your kids. You’re already making so many compromises and concessions that giving up those bigger dreams before you’re ready causes you considerable distress. And, I would not be unique in this. How to say this next part delicately….it is not the time to suggest that we should give up dreams of the second child, the dream trip to Morocco, or never have a career again. These are things that are important to us, that we have dreamed about for a long time. Instead, listen. Ask questions. Gauge where that person’s emotions lie at that point in time. We may need to stumble (and quite a number of times) before we can grasp and come to terms with our new or current limitations. And that can be painful as a loved one to watch. Your fibro friend or family member will appreciate you more for the simple act of listening. If they’re open to it, they might even discuss it with you. I have a few special friends that know my history and that I feel will give me considered and empathetic advice, BECAUSE they have invested the time in listening and trying to understand.
And remember, just because something is not achievable now, doesn’t mean it will NEVER be achievable. You may just reach it much more slowly and incrementally than someone without Fibro would. Dreams can also be changed and adapted and new dreams found. Be realistic with your goal setting. And keep some hope. Hope is a pretty powerful tool.
Thanks for reading. Catch you on the next post.
xx Jen – The Girl on Fire.
Hi! I’m Jen the Girl on Fire. Diagnosed with fibromyalgia in 2016, I started this blog as a way to raise awareness about fibro, share helpful tips and tricks and to allow others around me a space to contribute and share their own experiences with this condition. I am a mum, a wife, a singing and dancing enthusiast and fibro blogger, working hard to achieve new dreams despite a chronic condition.