Our bodies are miraculous things capable of great pleasure and pain, of impressive feats of endurance and skill, of small triumphs and disasters, and I am currently at war with mine. Well, maybe not war, but we are certainly not friends at the moment and I would happily consider some time apart. It would be fair to say I have a complex relationship with my body and I wonder if most people living with chronic conditions, like my own nemesis fibro, feel this way.
I was a sickly kid who experienced the full range of childhood maladies: mumps, chicken pox (a delight to have at 13 – I still have one pox scar that sits in the middle of my eyebrows) with a constant stream of ear and throat infections and at least one bout of quinsy but nothing out of the ordinary. To all intents and purposes, I was unspectacularly normal. Healthy.
What does it feel like to be healthy? I’ve kind of forgotten to be honest. It’s been a while. I’m not entirely sure when the switch from healthy to unhealthy was flicked but it seemed like I just went to sleep one night and woke up irreparably altered, as if I was trapped in a body that belonged to someone else. When a healthy person feels tired, they know that a good night’s sleep will sort them out and they will wake up feeling restored and ready to take on the world. That doesn’t happen when you have fibro. Fibro brings with it a whole new level of tired you have never experienced before, trust me. No matter how much sleep you get (if you are lucky to get some sleep at all), you don’t wake up feeling rested. For whatever reason, our batteries fail to fully recharge which can leave us feeling exhausted, dizzy, disoriented, unable to get our thoughts together (fibro fog), grouchy, anxious, depressed, and a multitude of physical symptoms can make their presence felt: numbness, tingling, stiffness or pain in various places in our bodies. A smorgasbord of ailments make fibro a complicated condition with no definitive remedy.
A few months ago my doctor and I devised a withdrawal programme to allow me to be medication-free as Lyrica can be highly addictive and as such, it was never going to be a long-term solution. Though I have noticed an increase in muscle pain, stiffness and fatigue, I’m doing okay, just taking it day by day. The last few days I seem to be giving Sleeping Beauty (with the emphasis on sleeping rather than beauty ha ha) a run for her money by wanting to sleep all the time so my daily goals at the moment are to shower, eat properly, and leave the house for some fresh air, even if that’s just a short trip to the supermarket to get some supplies in. These goals might not seem that impressive to you but you don’t know what chronic illness is until you’ve had to have a rest after taking a shower.
There is an amazingly supportive fibro community on social media and Instagram in particular is full of inspirational posts and fibro-warriors sharing their stories. One post I saw recently said ‘Health is wasted on the healthy’. Only when you have faced the daily treats that chronic conditions dish up can you fully appreciate the gift of full health. It’s estimated that 15 million people in the UK suffer from chronic health issues. My dad, bless him, has been completely incapacitated by a series of strokes, in addition to being fitted with a pacemaker when he was in his thirties and diagnosed with diabetes in his sixties. He has no quality of life; it is heartbreaking and sobering to see. Though I am dealing with my own health challenges – self-care is obviously my top priority – and the state of my body is not what I would wish it to be, it is what it is. Life cannot be the same as it was but it definitely could be worse. I am thankful that I am still me, mentally strong and astute, willing to show the courage of my convictions, and open to all of the new opportunities ahead. Life is not always easy but it is certainly wonderful and I think my body and I will make our peace eventually.
Take care, Lisa.
Update: I am now medication-free and exploring natural remedies for wellness.