*Warning – This post touches on a very sensitive issue in the last two paragraphs, maybe especially so for someone currently experiencing bereavement. My intention is not to upset or shock. I am simply being honest about how my illness affects me, and what my future may hold, should a cure or treatment for ME never be found.
I read an article recently that had me bawling my eyes out for most of that day. What I read was nothing I didn’t know already, but every now and then I am reminded of the bleakness of my situation, and I become overwhelmed by grief, hopelessness and uncertainty. The article is about NLP (Neuro-linguistic programming) which I have no interest in, so I’m not really sure why I read it, but these two paragraphs were what really got to me…
“The most important, and possibly the most difficult task for a person who has ME/CFS, is to reframe exercise as harmful, something to avoid in the same way one would avoid anything which was known to make an illness worse. We do not think it is a sign of weakness for people to avoid smoking, alcohol consumption or sugary foods, let alone dangerous drugs. In fact we may admire the willpower of people who can do this. We do not think it is silly for people who have allergies, especially life-threatening allergies, to avoid the things which are a danger to them. Physical exertion is a danger to people who have ME/CFS; if doing something can make an illness worse for a short time, and doing more of it can result in permanent and severe disability, it makes sense to avoid it. But our culture’s worship of ‘exercise’ doesn’t make it easy for anyone to take on board that it can be actually harmful.”
“We need to be committed, determined, in our battle to get the rest our body needs to fight this illness. We need to fight against our natural impulse to be active, to go the extra mile, to be the first to offer help, to sacrifice our own interests – we need to fight against our natural impulse to pretend we are just fine when we aren’t – in fact we need to be really strong in the face of disbelief, criticism, people who ‘don’t believe in ME/CFS’. You know why we must? Because all of that is the kind of person we are, and the only way we are ever going to be able to be that person again is, right now, to give that up. The more we demand our right to act like an invalid right now, the sooner we may begin to regain, little by little, the ability to be that person. And unless we are very strong and very determined to act like invalids right now, we may find that we drive ourselves into permanent invalidity, permanent severe disability.”
“We need to fight against our natural instinct to be active.” This might be the most depressing sentence I’ve ever read. Because I know, when it comes to ME, that it’s true, and I hate it, I hate that it’s true. I’m trapped in a world where over-exertion (physical and mental) will cause my symptoms to worsen and possibly cause permanent severe disability. But if I never over-exert myself and stop myself from doing all that comes naturally to me, then my mental health will deteriorate. I already take steps to avoid over-exertion. For example… Sainsbury’s deliver the bulk of my groceries and my mum tops me up between deliveries. I pay someone to clean my home. My mum puts my bins out, changes my bedding and waters my plants. After a bath or shower instead of using precious energy to dry myself with a towel I put on a dressing gown made of towelling material and lie down in bed until I’m dry. I use a shower stool. I wear noise cancelling headphones on car journeys. But despite the many steps I have taken to decrease the use of my limited energy I know I still do too much. What else can I give up? Visits from friends and family? Phone conversations? Preparing and cooking my meals? Baking? Writing this blog? Writing emails? Texting? Social media? Brushing my teeth? Washing? Getting dressed? Putting face cream on? Filling my kettle? All these things can cause my symptoms to worsen, but they are also essential for my emotional well being, not to mention my personal hygiene. So what on earth am I meant to do?
This current wave of fear and confusion comes at the same time that I’ve started taking the use of my heart rate (HR) monitor more seriously. Many people with ME use a HR monitor to help with pacing, in order to avoid over-exertion, and the post-exertional symptoms that go along with that. The aim is to stay within our anaerobic threshold. The anaerobic threshold is the heart rate beyond which we draw on energy reserves we don’t have. The threshold is around about 60% of a person’s maximum heart rate. So I should aim to stay below a heart rate of 110 beats per minute. I wear a heart rate monitor and it beeps at me when I go over 110. Saturday was a bad day, I was in day three of a migraine and I was feeling very low in mood. On a bad day I can’t manage as much as on a normal, or better day. This was reflected in my heart rate. Every time I picked something up, like the kettle, my phone, a mug of coffee, I would hover between 130 and 140 beats per minutes. I reached 136 when I put my face cream on, and I reached 167 when I made my breakfast. I started writing a facebook message to a friend and within the first sentence I reached 135. I reached 154 when I started writing this. I started to think of my HR monitor as the enemy, and was worried it was only going to become a source of anxiety. I felt like I was going to have to become a slave to my HR and ‘behave’ by staying below 110, and to do that I would have to give up, well everything really. And that made me feel even more depressed.
After I read that article and after my first day of monitoring my HR I started to wonder if I should cancel all my upcoming plans. Should I cancel coffee with my mum on my birthday this week? Should I cancel my sisters, niece and nephew visiting the Saturday after my birthday. Should I cancel the plans I have for friends to visit me over the next few months? Would cancelling these things mean I was ‘behaving’, and doing what I should be doing to get better? Or, by attempting to enjoy what little I can of this wretched life am I destroying my only chance of recovery? If, in ten years time, and I’m no better, will I look back and blame myself for doing ‘too much’? Or will I understand that I needed to do those things in order to maintain my mental health? This has been going round and round in circles in my head. There’s no answer.
I personally value the quality of my life over how many years I live. If I could be guaranteed a healthy five years, with the same quality of life I had pre-ME, knowing I would die suddenly after the five years were up, I would choose those quality five years over what I have now. What I have now is possibly decades of simply existing in a sort of non-life, just monitoring my heart rate while waiting for the day I magically get better, or the day I die. A life in which I am mainly housebound, a life starved of human interaction, a life in pain with no relief, a life without hobbies, a life without being able to explore my interests, a life without the chance of ever finding a partner, a life without travel, a life without work, a life without spontaneity. Every now and then I become crippled by the fear, the confusion, the uncertainty, the just not knowing what to do for the best. The reason I don’t know is because no one knows, not even doctors know. When you have ME you are alone, alone without having a clue about what to do to get better, and this terrifies me. I can’t bear the thought of living to a grand old age no better than I am now.
There is however something I can do to regain control of my future. There is a way I can put my future in my hands. And it begins with completing my membership with Dignitas. I’m not saying I will seek their help with assisted suicide this year, or the next, or in the next ten years, but it comforts me that this is an option. I don’t want to live out the rest of my possibly long life as incapacitated as I am now. I value my freedom and my independence far too much. My life as it is now is simply not enough for me.
A ‘Swiss death’ is not a knee jerk reaction on my part. I do suffer from depression, a common side-effect of chronic illness, but my membership request to Dignitas pre-dated my depression. I have known since 2002, during my final year at university that assisted suicide was a possible option for me. That was when my dad was diagnosed with early-onset Alzheimer’s Disease. It was then that I started thinking about my own mortality, and how I would want to die if I ever got diagnosed with an incurable or terminal illness. I never thought I’d get that illness twelve years later. The Ron Davis quote that I shared in Post Nine seems appropriate here… “The good news is, these patients don’t die. The bad news is, these patients don’t die.”. Many people think the severity of an illness is based on if it can kill you or not. Yes, a premature death is devastating. But so is a long life, where the only promise is one of pain, suffering and isolation.
By the way, just in case it doesn’t go without saying. Obviously my preference is that that I regain my health (sooner rather than later) and I go back to living and enjoying my life. That is what I want more than anything.