I don’t want to say that having ME/CFS is exciting – it isn’t. But during the process of being diagnosed and finding the best course of treatment that suited me, there is quite a lot going on. Since the start of the year, I have established a great relationship with my GP who is so supportive and understands me and ME/CFS with such clarity and empathy. My medication, although not entirely sorted, is getting there and I am more comfortable than I have been previously. I have been discharged from Physio as I found my baseline activity level from which I can pace myself. I have spoken to a Counsellor on the advice of my work Occupational Health Department and they are content I am as in as good a state of mind as I can be given the circumstances. I have applied for all the benefits and help I can. I have explored complementary and herbal remedies and I have adapted my home and surroundings as best as I can for the time being.
And then it hit me. That’s it. There is nothing left to do. I am fighting this, living with it, from now on, on my own. I have exhausted all options open to me and all that is left is to get on with it. Upon realising this I was struck, taken aback even, by how isolated I felt. Doubts sprang into my mind. Will I get better? What if I don’t? What will this mean if we have a family? Can I provide an income? Will I be of any use to anyone?
Because there is so little funding for, and awareness of, ME/CFS there is little data to analyse from which to draw conclusions. My GP says my prognosis is good, I am young enough that my ME/CFS is unlikely to last forever. Yet reading material online from respected sources suggests full recovery from ME/CFS is around 5%. Perhaps I will be one of the 5%. Perhaps 5% isn’t even accurate. The frustrating thing is nobody really seems to know. I am so used to googling a question I am not sure of the answer and finding it within seconds. But this won’t work for me now, because the answer isn’t there.
Throughout this illness I have seen others’ lives, careers and endeavours continue while I have been caught in a time warp. But I did not expect the same to happen with my healthcare, and it has caught me completely by surprise. I felt as though I was cut adrift, and now I’m inescapably being dragged away from shore and safety by a current of uncertainty. If I look into the waters surrounding me all I see is the dark, cold abyss of helplessness. I recoil in fear of falling overboard all the while clinging tighter to whatever is at hand and longing to be back onshore. Looking around I see these chaotic waters break on the reefs of pain and exhaustion, and yet my focus must remain on navigating past them in search of a better understanding of my body, my mind and this illness.
So where do I go from here? Is all lost? Perhaps being cut adrift is not an accurate way to look at my circumstances. What if I said that I have been provided with all the tools available to make a success of living with ME/CFS? I have been given all the help I can get and it is time, to use another metaphor, to take the stabilisers off my bike and cycle this path on my own.
Actually, when I think about it I am not on my own at all. If I was (and can be) selfish then all I would do is look ahead – the future is uncertain, and so there isn’t much to see which makes it scary. However, if I look to my side I see others with ME/CFS who have the same, or greater struggles. I can help them and they can help me. For instance, just writing this blog helps me and have been fortunate enough to receive many messages of support from those who have been helped by my writing for which I am so, so grateful. When I look behind me I see my family and my friends willing me on, wishing they could share the burden and doing all they can to ease my path whilst offering encouragement.
So I am not isolated at all but if I am careless, if I only look to myself and my needs then I will be, or at least I will certainly feel that I am alone. Instead, I will look to others for strength and offer what support I can in return. I will cry out when I feel lost but when I find my way I will guide those who are left stumbling in the dark. We, all of us who have ME/CFS are in this together, and together we will find our own way.