It’s been a few months now since I was finally labelled as having Fibromyalgia and Chronic Fatigue Syndrome (CFS). I’d like to say that the diagnosis came with a magic off switch that made it all go away, but unfortunately not. Shortly after my last post, I caught a simple cold, which attacked my ridiculous immune system and wiped me out completely for around 6 weeks. Remember how long the 6-week summer holiday felt when you were at school? I promise, 42 days feels a heck of a lot longer when you’re chronically ill.
I’d love to say I am exaggerating when I say “wiped me out completely”. Honestly, I wish I was, but for days, the eternally patient JW had to help me sit up in bed, carry me from one room to the next; and even the simplest tasks like getting dressed weren’t possible without help. I can’t sugarcoat it. Life was SHIT.
I don’t expect you to be able to imagine how that feels, but if you want to try, who am I to stop you. It’s like having flu, combined with the worst hangover you ever had that keeps you from sleeping for 3 days which makes you so clumsy you burn your hands in a fire and then get run over by the ambulance someone called to help you…and just as you were getting up, someone mistakes you for a burglar and smashes a baseball bat round your head. Now, picture waking up to that happening every day for 6 weeks, and you may have some idea of how I felt. Now imagine that on top of all that pain, you felt completely and utterly humiliated too. The kind of humiliation you felt at school when you wet yourself in assembly and everyone turned and saw. That lonely, excruciating shame that oozes out of your pores and gives you nightmares. Fun huh?
Because that’s one of the main problems with this disease. It isn’t just about the pain. That pain, however bad, is manageable. What isn’t, at least for me, was the fact that I lost all my rights. I was incapable of looking after myself; of even standing up without falling down, so had to turn over complete control of my life to someone else. I was completely dependent, and hated every second. The fact that I was disabled, useless, worthless, and needed help with every last thing destroyed me. No-one else saw me like that, but I did…and couldn’t shake the feeling.
I had lost control of my world. And that did not sit well with me at all.
I have always been a fiercely independent person. Unfortunately I’ve had the misfortune to be the “victim” of many cruel life events, but my inner strength and determination have always kept me surging forward. I always believed that around the next corner would be something better; something wonderful. I have rarely let myself rely on anyone else. Jeez – I’ve hardly let anyone get close enough to even try to help me. When I left home younger than anyone should have to, I battled the system to make my life better. When I’ve had no money, I fought (hard) to make it. When I was injured in the hit and run, I did everything I could to get myself up and back to work. When I fall, I get up again. It’s the way I’ve always been.
This was different though. I had no choice. I had to give in, and let myself be cared for. And I don’t think anyone could ever warn you just how hard that is going to be. You put your entire life in someone elses hands; you can’t make your own decisions, or choose what, where, when. You have to lay back and trust them to do the best for you. You want to feel safe and happy again, but instead are full of guilt, rage, resentment, fear, sadness and grief. Whoever you were disappears – just slides off into the night. I became a shadow of myself. In a few short weeks, any confidence I had drifted away. I had no strength left to fight. I was scared and broken. I checked out.
The pressures conditions like mine put on any relationship – be it family, friend or romantic – are both numerous and frightening. As I started to improve, all the anger that I felt about being in this horrible situation boiled to the surface and then spilled over; and much of the patience JW had shown for so many weeks was replaced with frustration. Chronic illness doesn’t just take one life away…it affects the Carer’s too, terribly. You become a full time job; but they have another full time role they also have to pay attention to, or the bills go unpaid. They can’t even recognise the person they love, because they’re not necessarily present, but of course, adoration and obligation make them put your needs before theirs, causing stress and tiredness. Of course, JW wouldn’t leave me home alone in that state, so he put most socialising on hold. I didn’t want to burden him and he didn’t want to bother me. Something was bound to explode, at some point. And it did.
I had become, quite frankly, a rather miserable little madam – constant pain has a way of doing that to even the nicest of folk. I was hugely grateful for everything he was doing, but my stupid pride made that hard to express, and instead my vexation with the situation shone through. Nothing was his fault, but after weeks of no sleep and hurting, I stopped caring whose fault it was. I just wanted it to stop, and if it wouldn’t stop? I wanted someone to blame.
After a difficult argument (trouble in paradise!), JW confronted me with a few home truths.
I had become a fraction of the person I was before my diagnosis. While of course there would (and should) be changes to my lifestyle and certain aspects of my personality…it went deeper than that. Hearing that there was no cure for these conditions had hit me harder than I had realised, and while on the surface I was trying to stay positive, deep down I had quit. Handed in my notice on life, and was just riding it out til it was time to go. I wasn’t trying to be better. I wasn’t giving life, or love any effort at all. I had completely lost myself, for the first time ever.
This (fairly brutal) honesty was the emotional jolt I needed. Of course at the time I wanted to cry and scream and spit swear words at him for being so mean to an ill person – but after a few hours with a good friend and a (forbidden but necessary) glass of wine – I realised I needed to change.
And I have.
I took some of my own advice and did a life audit. I decided to stop focusing on the things that were making me so unhappy, and to rediscover the things I love again. OK. so there is a lot I simply can’t do for now. But I can dream, and I can write, and I can see friends and laugh and read and even, with the love and support of some good people, start to plan an event and feel useful again.
When you can’t do the things you take for granted, like sleep, or make your own dinner, or write with a pen because your hands can’t grip anything, you stop having faith in yourself. You begin to feel worthless. Unlovable. Unnecessary. And for someone who has always fought so hard, having no fight left was soul destroying.
But…knowing I had someone to hold my hand; to remind me that even with baby steps you get somewhere in the end, I’ve stopped seeing life as a chore, and remembered I am lucky to have breath in my body and the rush of blood in my veins. After being cooped up in these four walls, I’ve been venturing outside again, and even a few hours a week is making me stronger; igniting a spark that I thought had gone out for good. I can’t do much, but just breathing fresh air and feeling the snow fall on my face has started to made me feel alive once more.
All this has also taught me something about who I am. My life may have been a roller-coaster that has fallen off the tracks more times than you can imagine, but every time I have crashed (unfortunately literally as well as figuratively), I’ve come back stronger. MUCH stronger. I have turned every bad situation into a great one. Every negative has ended up being a huge plus. And while I can’t control this illness, or occasionally the state of mind it creates, I can keep reminding myself that I am lucky. That I am bigger than any illness. That I am courageous, and capable of many good things. I don’t know yet what I’ll do next, but I know that if all I ever do from now is help one person feel less defeated, more inspired to take on the world again – I’ll have done enough.
And you know what? Best of all, making these changes in me has made changes in everything around me. It’s like opening the curtains up, and letting the light flood in. My home is full of happiness. I’m seeing and speaking to my friends daily, after my self-imposed exile. I’m smiling. I’m writing for the fun of it. I’m trying my best to raise some money for GOSH…remembering that there are many out there a lot worse off than me. I may be a little bit smaller, a little bit weaker, a little bit slower than I was before, but you know what? I’m still fierce.
Despite the incessant pain; the problems that brings and the exhaustion that plagues me, I’m in a good place. I’m ready for the next battle…and I’m going to win.
It took a while, but I finally realised this can only beat me if I let it.
And that’s never going to happen.