Yet Another Thing I Don’t Want To Talk About

I am engaged in a writing practice with a friend, a practice I call Page A Day. We write a page – of whatever arises – every day, and share with each other. In the past I have had some success with this practice, producing short-form work that I could edit for publication. These days it seems to be mostly a kind of journal. I’m not happy about that, but there is not much I can do, it feels. It is what ‘comes up’. There was one piece my friend said she thought should be published in some way, part of a longer essay perhaps, as it was about one of those subjects no one likes to talk about, not if it applies to them: the subject of loneliness. It’s the same with chronic illness, and death/grief, the other things I have in fact written about in this blog, not really wanting to, but somehow feeling compelled to do so. I have written before about loneliness, but I suppose it’s asking to be talked about again.

This isn’t an essay, but it’s the best I can do for now. At the end of the blog I will copy the “page a day” I wrote.

As a writer, and an introvert, I actually need to be alone for long periods, to create, to recharge, but being alone and loneliness are two very different things.

Loneliness is of course a ‘side-effect’ of having a chronic illness. And, as I wrote in the above mentioned blog, there are other circumstances in my life that contribute: my beloved partner David’s work takes him away for nearly six months of the year (each trip about 10 days to two weeks long) and the fact we don’t have children and that we have moved around so much and don’t have roots where we live. Most people our age have full lives and families and enough friends, so it is hard to make connections – particularly for myself, being a writer and so my ‘work’ is at home, but mostly because I am chronically ill.

Friends drop away. This is a fact for those with a chronic illness. We often have to change plans last minute, or we can’t travel far to meet people. These limitations have a knock on effect: in the end it’s just too much trouble for people to fit into our limited lives. And, when I’m sick, I feel quite vulnerable, there are not many people I feel truly comfortable being sick around. Instead I tend to over exert myself to fit in with their level of energy. So it’s easier just to wait things out before I suggest meeting up for a tea or coffee. But it’s a vicious circle: loneliness actually alters the immune system. And another great article in The Cut on this subject: What Loneliness Does to the Human Body by Ashley Fetters.

I have a number of close friends in the world, but very few living near me. Yes, there is the phone and WhatsApp and Skype, but it is absolutely not the same as meeting in person. I can literally feel it in my cells, a shift, a brightening even, when I’m with someone and engaged in a meaningful interaction.

I have in the past year made a concerted effort to make sure I at least get out and sit amongst people at a café, and my monthly writing workshops are not only a fulfilling experience for me, but have also brought some lovely people into my life. But still, I have frequently found myself in that empty, despairing place that is loneliness.

This is the piece I wrote during one of these times:

When I go upstairs for my lie down, Ronan follows me, and if he doesn’t I call him. He usually starts to knead and purr by my side and hopefully will curl up next to me. I put my arm around him. Sometimes he moves away a little or stretches and I stretch out too, so that a part of me is touching him. Sometimes I hold onto his tail. I love the softness of his fur. The warmth of him. But it doesn’t ease my loneliness. I’d like someone in the house. They can be doing their thing in their own room, but I want someone nearby. Just to know they are there. The worst is at night when I’ve watched too much TV, too much Code 37 Sex Crimes and First Dates. When I’ve had enough of TV I feel the dark cloud fill my stomach. Usually I get up and go to the computer, but I know I should sit with it, and just be with the feeling, to let it come through. To be present with myself, with my loneliness. To be the person in the house, just there, doing their thing.

 

More Things I Don’t Want To Talk About

I shared my ‘invisible illness‘ blog on Facebook, and in the comments someone suggested I had more to write on the subject. I told her writing the blog made me quite depressed, putting my health situation ‘out there’, in public. For me it seemed to concretize what was going on, to make it all the more real, all the more inescapable. And not long after writing the post – although I can’t prove a connection (there were other factors) – I had a serious CFS/M.E. relapse, putting me entirely in bed for nearly a week. It was the most serious relapse I’d had for months. Imagine having a severe tropical illness, or something like pneumonia, and you are in hospital. You are on the road to recovery, but still bed-bound. This is how such a relapse manifests for me.

I had felt something coming on for several days prior, one of my least favourite chronic symptoms rachetting up: a sensation of pressure in my head, combined with intense bi-lateral tinnitus increasing in volume from the time I wake in the morning until I go to bed, at which point it is almost unbearable. I can do nothing but listen to the clanging, a tone of a school alarm alerting you to a change of class, or the sound of a fire alarm in a public building. It is this particular tone. I’d have a digit removed if it meant this symptom could magically disappear. It started about 3 years ago, and occurs every single day. It’s worse when I’m tired or ill, but it’s always there. An alarm going off inside my skull.

What I haven’t written about my health situation is my anger. My profound despair. My hopelessness. My depression. Much of the time I ‘manage’. I’m good at managing. If my symptoms are fairly consistent and not entirely debilitating, and if I can apply some kind of routine to my day, and if, every so often I am well enough to get out to meet with a friend, I am not angry. I am not despairing. I am managing. Those emotions sit there quietly in the back waiting until I am once again thrown into incapacitation as I was last week. Then I think to myself, “I cannot carry on like this, I just cannot.” When I am so debilitated I can’t write, I cannot see friends, I can barely even read. Life doesn’t feel as if it is worth living. These are hard times.

I went through a protracted period of incapacitation about a year ago, and I realised I had to take stock. If my life was to continue like this, then what? I was at the end of my tether. I have been suicidal in my life, I have had several breakdowns, but this was not that. This was taking a good hard look at my situation. The facts. I knew I needed two things: nature, and a community. I needed to be in a place where close friends would be willing to come to me, to sit quietly perhaps, to make me a cup of tea. Or not, just to be in the house, so I can hear them chat away to themselves. The clink of cups. A kettle boiling. When I am ill it is often better for me to be alone, but I like to know there are people nearby.

Until that point I was very isolated. I had no friends in this city I’d been living in for five years (word of advice: if you have a chronic illness, are a writer, do not have a ‘job’, have no children, do not go to church, and your partner’s work takes them away for nearly six months of the year, do not move to a city where you don’t  really know anyone). It’s not that I don’t have friends, I do, several wonderful friends, but most of them do not live in the country I live in. Isolation is well documented to adversely affect health.

So, I forced myself to teach once a month (doing any kind of regular work, a normal ‘job’, has been impossible for decades, as I never know when I might be too ill to do the work).

My teaching has brought a handful of beautiful people into my life. But it’s not enough, particularly since they don’t live within walking distance.  This is what I call community. Someone next door. Someone across the way. A tiny village.

Nature is our minuscule patio filled with the sound of the industrial fans from the shop beneath us and the shop beside us. The patio is also a thoroughfare for those working in the shop below, so is never private. There are no parks near enough for me to walk to, and although the English Channel is but ten minutes away, it entails crossing a highway. This might not seem like a big deal but I am so noise sensitive (hyperacusis) going near this road actually hurts.

We need to move, not just because where we live is not conducive to my health, but also because our overheads are unsustainable. And then I worry: if we move far, to a new place, what happens to the friends I’ve managed to make here? Will I have to start over? What about the wonderful psychiatrist homeopath I am able to see nearby on the NHS? The TCM practitioner I’ve just found? There are so many other factors that make any kind of move complex and difficult, let alone the actual move itself. This is barely conceivable for me to manage.

Everything feels like a catch-22.

I have avoided talking about my anger about my illness. It’s not present right now. Anger is not an emotion I feel frequently. I can count on my two hands the times I’ve actually been enraged. I’m not suppressing anger, it’s just not there. But I am angry about my illness. I do not feel I signed up for this. I remember a friend, some years ago, telling me I did not seem like a sick person. I do not have the profile of a chronically ill person, whatever that is. Does anyone sign up to be ill? No, of course not. Also, I do not believe we are given these challenges by the universe to “teach” us something.

But we do have an opportunity to take a look at how we react to challenges, how we are ‘with’ whatever is going on. We can learn from what we are going through.

In the early years of my illness, when it manifested as bouts of acute bacterial and viral infections, I learned something: if I fought what was going on (a literal physical sensation of trying to push my body, my discomfort, away from me), it worsened the symptoms.  If I physically relaxed, and was ‘with’ what is, things eased. I did not get well, but my experience of whatever was going on improved.

Now that the progression of the illness has changed, now that each day includes long periods of discomfort, I am neither with nor against what is happening. I am simply bearing it. Even when I tell myself “I cannot bear this.” I am bearing it. I have no other choice. I will not end my life, even though sometimes it feels as if my life is ending me.

I have avoided talking about my despair. In my blog about having an invisible illness I linked to a post in the New Yorker about memoirs of disease. One of the memoirs is ‘Sick’ by Porochista Khakpour. I haven’t read it. I had come across it some time ago, and thought I should. Porochista Khakpour was finally diagnosed with chronic Lyme disease and treated with antibiotics amongst other things. A few days ago I decided to find out how she was doing. What I discovered was the thousands of dollars it took for her to be diagnosed and treated. More money than I have, far, far more. She raised much with crowd funding. I am not sure I could do this: my shame around my illness prevents me (another thing I haven’t written about). And then I learned she is still not well. By the time I finished reading all this, I could barely breathe. I don’t have the money to pay for this kind of testing or treatment. And even if I do, it may not make an iota of difference.

I was at rock-bottom. Sick, despairing, hopeless.

But at the bottom there is nowhere else to look but up. Once again, I knew I had to take stock. I had to turn my focus to the aspects of self that are not my illness.

I recently won a prize for my writing (I cannot announce the details publicly for a few weeks), and I am reminded: I am not just a sick person. I am also a writer, even if all I can do is to think about what I would like to write. I am also a friend, even if all I can do is talk to you on WhatsApp.

I am still here and the day will unfold with its challenges. I haven’t given up yet.