I don’t like to talk about what it’s like to “have a chronic illness”, because everyone’s illness affects them in different ways. I only know what it’s like for me. My diagnoses are ME/CFS and FND. Both of these are somewhat ephemeral in that there is no solid diagnostic test that confirms that you have the condition – it’s more a case of ruling out what you don’t have and then fitting your symptoms into what’s left. My suspicion is that there are actually a number of things that cause the condition and as our medicine gradually becomes more advanced, we’ll slowly start to identify these causes.
When I was diagnosed with cancer a few years ago, my wife and I were actually quite excited that I finally had a firm diagnosis of something. There was treatment, things we could try, tests we could perform. In contrast, when I was diagnosed with FND, the consultant neurologist basically said, “You might become bed-ridden for the rest of your life, you might get better, who knows. No idea what might help. Goodbye.”
The pain became so bad I was writhing almost all the time. I couldn’t sleep for the pain. I couldn’t do anything while awake for the pain. Eventually I went to the GP and pleaded with him to prescribe me something – I had to tell him what I wanted, of course. He agreed and it was a huge improvement. I then stumbled across another painkiller and asked to be prescribed for that. It, too, made an enormous improvement. The pain didn’t go away – it never goes away – but it became, for the most part, liveable with.
What am I left with? I’ve not experienced a day since my diagnosis without pain and exhaustion.
My legs are constantly in pain. To have any hope, I have to be able to stretch them out, so I often take up one of the sofas, and I have footrests under the desks where I work. But all that does is give me a fighting chance I won’t be in agony (even with all the painkillers) – the pain never leaves.
My hands are always in pain. For some reason my left hand is worse, but it means that I sometimes find it difficult to hold something – like the handle of a milk container for example. And it’s painful to write or type. I’ve never got the hang of dictation software; for the most part I can put up with it so I’m sticking with keyboard for the time-being. It’s not like typing actually makes the pain worse – nor does not typing make the pain better. Doing up buttons on shirts is always painful. The small buttons on shirt collars are the worst and I sometimes have to ask my wife to do them for me.
My arms hurt. I have to keep them close to my body because reaching out for anything is really painful. I even had to ask my wife to get a shirt from the wardrobe the other day because I literally wasn’t able to reach for it. Putting on or taking off T-shirts is similarly painful because I have to lift my arms through the sleeves – no getting round that one though. Believe it or not, even putting on deodorant hurts.
My feet have the classic neuro pain of feeling like they’re on fire, although for me it feels a bit more like I have razor blades stuck in the bottom of my feet. Sometimes it’s not too bad and I can walk around a little bit, but at other times even standing up is too much. And sitting down with my legs stretched out doesn’t remove the pain – it just lessens it. There are times I can’t even wear socks because of the pain of the material touching my skin.
My eyes are always in pain. Anyone who sees me might notice I’m often squinting. If you’ve ever experienced the feeling of staying up so late through the night and becoming so tired that your eyes start to hurt … it’s like that, only it never goes away. It’s better if I close my eyes, but that’s not really a solution. Some days I can barely open my eyes all day just because of the pain.
And the exhaustion. Oh, the exhaustion! I’ll sometimes have an hour or even two where the tiredness levels aren’t too bad and I’ll think, “This is great. There’s so much work to do and I’ll be able to get a ton done today.” But it never lasts and sometimes it might be only an hour later that I ring my wife and ask her to come and pick me up from the office because I’m so tired I can’t even focus on what I’m looking at on the computer screen.
When someone asks me how I’m doing and I say “Fine, thank you,” what I mean is, “I’m in quite a lot of pain and I’m knackered, but I’m coping with it just now.”
It’s difficult to know if, since my diagnosis, I’ve got any better or worse because it all kind of blurs. I’m better some days than others – often for no apparent reason. The last couple of months have all been worse than usual, but I’m hoping that’s temporary.
I try and put on a cheery face. I’ve managed to run a new business for the last 5 years and have several people work for me – I have to be positive for them, for my family. And in any event, I’ve never been one to mope. “Where there’s a will, there’s a way,” has always been my attitude.
But sometimes, I just want to collapse. I mean, this thing never ends. Being exhausted all the time is, well, exhausting. And sometimes I’m just exhausted of being exhausted. I’m fed up of being fed up. Tired of never having a moment when I’m completely free of pain. My 86-year-old father can do so much more than I can. It’s embarrassing. When I have to ask my wife to cut up my food because pressing down on the knife is too painful it’s just … well, I don’t know what word to use. It’s all draining. Life is hard work for us all in different ways, but for it to be hard work Every Single Minute of Every Single Day is … well, it’s really hard.
Several very, very kind people came over to the house and helped us move a bunch of furniture out of the kitchen for a new (softer) floor to be fitted a few weeks ago. I honestly can’t say how grateful I am for that. But it also feels … almost dehumanising to be sitting there on the sofa with my legs stretched out, while others are moving heavy furniture all around me. Do I want to cry tears of gratitude or of shame?
I look at myself: I have no limbs missing; apart from a chunk of flesh missing from my arm where they cut out the cancer, I have no other visible marks or deformities; most people say I look young for my age; I’m a bit overweight (because not being able to do any exercise and being on certain medication does that) but not horrendously so. I’ve not got over the “I should be able to do all these things,” feeling. I want to contribute, but it’s so very, very, very hard.
I’m very blessed, I know. I had many years of being able to run around with the kids in the garden, of doing some amazing things in my career, of working hard in the Church I love. My wife is the most incredible, loving, supporting person possible. I know my family loves me. Those are all things that not everyone can say; so yes, I know I’m very blessed.
Nevertheless, after many years of this unfathomable illness, I’ve sometimes had enough and just want to collapse for a year or two.
Why am I writing this? Well, it’s not for sympathy. I don’t need people to say, “How terrible for you”, or “You’re so brave”, “You’re an inspiration”, or any of those sorts of things.
I don’t need well-meaning advice. “Have you tried …”, really doesn’t help. That just makes me feel like you’re judging me – that you think it’s my fault I have this illness. I’ve probably heard it all before and maybe even tried it anyway.
There is still a part of me that wants others to understand, though.
To understand that there are people – not just me, but many – who might look perfectly healthy and fit, but behind the mask really aren’t. People who want to contribute but for whatever unseen reason can’t (whether that’s physical, emotional or mental). People who feel embarrassed or ashamed or humiliated when they see others doing things that they think they should themselves be doing. People for whom just living another moment is about as much as they can manage – and there’s a good chance they’re feeling really guilty about that.
So, please, please, please, don’t judge.
I’m very lucky that there are so many people within my circle who don’t judge me for what I can’t do. We need the whole world to feel that way. But let’s start with just you (and me). It could make all the difference to someone. And that isn’t exhausting at all; rather, it’s uplifting.