If I write the words 'lately I am struggling' it seems to me that I am always saying that. Lately. I am in pyjamas in bed more often than not and if I do get up and dressed I really don't much care what I wear. I am mostly quite disinterested in clothes right now, though a couple of times a month I get the chance to go out and I admit I do want to look nice. It takes a huge amount of energy though and after one outing I am back in pyjamas and bed for a few days. I am too tired, too aching, too foggy-brained to care. I sometimes am able to get up for awhile and doodle. I write randomly, adding to my collection of un-posted blog pieces, mainly writing to release thoughts. I may have a day where I work on the novel, writing for a couple of hours, but that is nearly as exhausting as an outing. Then I spend several days wishing I could take it on again but I can't make my brain cooperate. I re-read a bit and hate it, because I always hate it when I am tired. When I have energy and want to write I feel enthusiastic, encouraged, I have plans, I know it is very rough but I know what I want to do with it. When I am tired I just think it is crap and my art is crap and I look like crap so better just stay home and not be seen anyhow and maybe just eat junk because blueberries and omega 3s are not exactly curing me. Yes, living with a chronic illness can be a bit depressing and although I am a strong believer in being positive and I am instinctively a positive glass-half-full person, it does get to me and I would be lying if I said it didn't. Because I write about living with ME hoping to help others cope with it, knowing they are not alone, I have to write honestly.
I take medication for anxiety and depression. A moderate dose keeps me on a mainly even keel and it is typically a treatment used for people with ME. Are people prone to depression and anxiety more prone to getting ME or is it that depression and anxiety are caused by ME? That isn't really known but for the most part it doesn't really matter. Because I have had the ME for so long, from around the age of fourteen or fifteen, I have some difficulty separating ME symptoms from who I am. Because it is, for me and for many, a long term (chronic) roller coaster of relapses and remissions and adapting lifestyle during remission in an attempt to limit or prevent the relapses, I look to the periods of remission to remind myself of who I believe I truly am. I look to the person who tries to emerge the moment I feel even slightly better, even if she is trampled down again quickly by the evil persistence of the illness. What I consider the real me, is someone who is perky, bubbly, enthusiastic, positive, energetic, athletic, creative, full of life and love. This, along with a portion of my cognitive abilities, is taken away from me during relapse and to some degree constantly. Considering this, can I really criticise myself for getting depressed or for panicking about my ability to function?
I should be used to this by now, having lived most of my life this way, but it's rather like being teased, offered the promise and hope of recovery and then having it snatched away, repeatedly. On some days I want sympathy, though on most days I don't. Always, I want understanding. It's difficult to write about it knowing that people who read this will feel compelled to respond with sympathy. Then I feel guilty, as though I have begged for it. And how do I respond? What more to say is there really than, thanks? I write this not for my reader friends who come to this blog for the cheery bits, or who I know are kind and caring and are going to offer sympathy and concern even though I have put them on the spot. I write this for those of you out there whom I don't know, but who may also be living with ME or know someone who is. I offer up my experiences because it helps to know we are not alone. It helps to know others understand. It helps me to know that even on a day when I lie in bed feeling like shit I might have something to offer. Obviously, I wrote this on a day when I felt unwell and a bit blue. I have selected it from the archives and posted it on such a day too. I worried about how I was not succeeding at visiting the blogs of my friends as much as I want to. I visited one or two and felt worn out. I cannot keep up, as with so many things in my life. I posted this and went back to sleep.