In my first few months of illness I had every test and investigation possible, trying to get to the bottom of this debilitating condition that appeared out of nowhere and never left. I saw doctors at my GPs, at urgent care, at A&E, via private referrals. I was poked, prodded, scanned and tested and for the most part it all amounted to…nothing. Certainly nothing that could be causing the symptoms I experienced. Debilitating fatigue that left my barely able to brush my teeth. Orthostatic intolerance that would have me light headed after a few minutes on my feet. Muscle and joint pain from doing..nothing. Brain fog that left me reaching for simple words, struggling to form sentences. Eventually, without anything else to pinpoint my illness on, I was diagnosed with ME/CFS.
For months I simply existed, rather than lived and even when I came out of that initial fugue, I was nowhere near the person I was before. I used to run half marathons, swim for a mile at a time (once when 40 weeks pregnant – the lifeguard looked slightly panicked the entire time I was in the pool after asking how far along I was 😁), lift heavy weights, walk for miles with a baby strapped to me. I drank and danced and laughed, partied hard and worked hard. This new me struggled to hold a conversation without getting exhausted. Had to plan any outing around how often I would need to sit down. Could barely work for a few hours without needing to rest for the remainder of the day. Couldn’t leave the house alone with the kids in case my body shut down on me.
After investigating every avenue I could think of in terms of specialists and tests, there came a point where I started to accept my diagnosis of ME/CFS. Of never really knowing why this had happened, but that it had and I had to learn to live within my new normal. When new symptoms appeared, like my chronic migraines, I would once again go down multiple avenues for a cause, a cure, but in terms of my overall health I was moving towards a point of..acceptance.
I’ve been here a few times now over the past couple of years. Accepting this is just who I am now and I have to adapt. And alot of the books out there on how to ‘recover’ from ME/CFS say that this is important, that continuing to look for answers is a waste of energy. But it never quite sticks. After a while of ‘accepting’ I get restless again. Worried that there are still things to investigate, avenues not quite explored.
So that’s where I currently am. Down a rabbit hole trying to figure out if previous tests missed something. Or maybe caught something they didn’t think important or relevant. My current obsession is ferritin, the protein that stores iron. A few years ago mine was low but when I retested it was within the normal range so the Dr said it was fine. Having read a ton of research articles however, ‘fine’ and ‘optimal’ are two different things. I’ve now found a whole community of women who had similar symptoms to mine, all with similar iron levels and many symptom free after treatment (likely to be months or years of iron supplementation, unless I can convince my Dr to do a series of infusions…will know more next week after more tests).
So even though it might be one more fruitless attempt, another thread of hope snuffed out, I’m going to keep trying to find that illusive answer. If it isn’t iron then I might go back to acceptance for a while. Before starting the next search..