Ok, so I wrote this with only myself in mind, so I have put in a lot of personal stuff, which I am still not entirely certain that I want to put onto the world wide web, but hopefully it will be a good move. It is going to be a long read and there aren’t many pictures I can add to break it up either, so sorry about that!
When I am having a relapse, I hate my life. I am so bored, so lonely, so frustrated and so empty. I lie on the sofa, watching mind numbing, no brainer tv because this is all I can handle. If I watch a film I can’t follow the plot line, if I watch some episodes of a programme I enjoy, I forget what has happened before. I can’t concentrate long enough to read a book, and my eyes won’t be able to focus for more than half an hour anyway before the cilliary muscles give up. I have played games on my phone, but a lot of the time I can’t even summon the strength to hold my phone up. In short, all I am able to do is lie on the sofa watching random images to prevent myself going completely mad with boredom.
All I want to do is go to my perfect job , work really hard on a subject I am passionate about and love, then enjoy myself with my friends. But this is a thing my CFS will not allow me to do. I am not used to letting something stop me from achieving things. I am not used to having to do less than my best. I hate it. I hate it, I hate it, I hate it. It is like a kill all switch goes off inside and everything starts to shut down. First my muscles, then my joints, then my brain. My concentration span is reduced to that of a knat and my swimming-loving body is made into an invalid. How can I be at war with myself, how can my own body betray me like this. I know it is not my fault, but what if it is? What if this was caused by something I did or didn’t do when I was younger? But then, I was diagnosed at 15 and I don’t think I would want to have done anything in my 0-14 years on this earth any differently anyway. So this point is pointless to think about.
To be honest, I have written this much and I have already lost my trail of thought. I can’t remember what I was going to say, I can’t think about what I should write next, what would flow best to describe now. All I can think is, well, expletive this expletive. My eyes have lost their focus now, so I am not sure if this is written correctly, but perhaps I can go back and spell check later when I have had some sleep. Not that that will happen any time soon, because the irony of all ironies that comes with this bastard fatigue syndrome is that I also have insomnia. I have spent the last month of this current relapse going to bed at, latest, 10 o’clock and very often earlier, but not falling asleep until, on average, 3am. So I lie in bed, tossing and turning and completely awake, but exhausted. Muscles and joints aching painfully and working so hard to prevent hatred from coursing through me.
I need to get back to work, I miss it. I miss my colleagues and friends, I miss my commute, my office, using my access card, having lunch, especially the actual work itself. The awkward thing is that when I was a competitive swimmer I used to say “I can’t” a lot. A lot. I am a very insecure person, and I believe I used it as a defence mechanism, where if people weren’t expecting me to do well then I couldn’t disappoint them. I also loved surprising people, I loved proving people wrong. I was not the most athletically built swimmer, I was nicknamed “Mrs Blobby” by my coach whenever I came back from boarding school in the holidays. But I trained hard and I loved it and I am fiercely competitive. I beat people and that surprised them and I loved it. Now that is biting me in the arse. Because now, I actually, physically, can’t. But people are so used to me saying this, but doing it anyway that they think this is the same. That I am just being lazy, that I could do it if I really worked hard and pushed myself, powered through, DID something. But I just can’t. I hate that I can’t. I would love nothing more, but I can no longer surprise people other than by being a failure and not doing what I mean to do, what I have said I would. If I had one wish in the whole world, it would not be riches or brains, or even love. It would be no more cfs. But this is not possible, there is no cure, there is not even any form of treatment. So I have to deal with it, I have to be strong in my mind, because my body cannot be and other people often make it worse, without meaning to, but they still do. The parts of my brain involved in my knowledge, my calculations, my analysis, my science may not work at the moment (this is an important phrase to remember “at the moment”), but my consciousness still does. My mind can still be rational, I can still speak, I am still aware of what is happening to me and therefore it is important, of the utmost importance, that I keep this positive.
I have suffered from depression before, when I was beginning university I had a group of friends, who weren’t really friends at all and made it worse rather than better, made me feel guilty and lazy and worthless. I self harmed and I reached out for help to a good friend, who rejected me again and chose not to help. It was of course more complicated than that, but at the time I didn’t care about his reasoning, it was just another blow, and the worst one yet. We are still friends, but I still keep reserved around him, without meaning to or realising sometimes. I cannot allow myself to go back to that state again, I must survive. I must not merely survive, I must live. I cannot do that if I let my mind slide back into depression. I may be alive, but I won’t be living, I won’t be enjoying the world, the people in it and the opportunities there are to explore. People who have had depression will recognise that it is a constant battle of wits against yourself. You are never completely free from it. Whenever something depressing happens in your life, you have to fight and fight very, very hard to keep your mind above that threshold. It is the same with cfs, and why people who have cfs very often get depression as well, for funsies, because cfs obviously isn’t enough. Your whole life changes, you have to stop doing things you love, that make you, you. You have to redefine yourself.
One of the most frustrating things about this illness is that it has only recently been properly recognised as a legitimate illness. Only recently have people started to be believed that they are not making it up, or trying to get out of doing things because they are lazy arses. This means that we are only starting to come up with a basic tool in order to scratch the surface of the mechanisms of how and why it occurs, why does it occur in some people and not others who are doing exactly the same things. For more information about the current research going on in the cfs world have a gander at these sites:
Hopefully these wonderful people will begin to piece together what it is that is happening in the cfs body, be it brain, blood, protein, DNA or hormones processes, we just don’t know yet, so we have to look at everything. This means it will probably take a long time, but we just need one breakthrough to give us an area to focus on. I hope this will happen in time for me. I am not sure how I am supposed to be a scientist, swim the length of the channel, travel the world or in the future become a wife, a mother if I cannot control this.
I didn’t write this originally to be read by other people, I wrote it because I was feeling particularly pissed off and the thought came to me to just type it out. Just type it out. It has helped I think, I feel less pissed off anyway. But if there are now people reading this, then I hope you have found it illuminating, and not bitching or whining, but simply stating fact. If you would like to know what the best thing is to say to people with cfs, I’m afraid I can’t help you, it’s different for everyone. What I can say is that please, believe us. Whatever we say, believe us and do your best to work around it. If we can’t come to you, go to us. The likelihood is, if we’re good friends, we really could do with seeing your face and smiling for a bit. It is unlikely we will actually be able to hold a conversation for much over a couple of hours, but you will brighten our day and our dreams will be sweeter. Be understanding and don’t push and that alone will help more than you can imagine.
If anyone out there is reading this with cfs, I hope this has made you feel less alone. There are so many more people out there with this debilitating illness than anyone first thought, and the cavalry are coming. FOR SCIENCE. Keep your head up, keep working it out, finding what works for you personally, because it is different for everyone. Yes, it is likely most of us will live with this syndrome for our entire lives, but that is no reason to lose hope. That is, in fact, why we MUST hope, we have to believe it will get better and that there is a bright and happy future ahead for us all. And I do truely believe there is, if at first you have to drag your baggage down a bloody bumpy, pothole infested road for a bit first. Lay down some smooth concrete ahead of you, find what makes you happy without causing you to relapse and make sure you do it. Surround yourself with a fantastic group of people, friends, family and pets so that they can help lay your beautiful, shiny, glittery magical road. My friends are my world, I could not be who I am today without them, they have changed me for the better and for good. As the wisest of all wizards once said, “It is the unknown we fear, nothing more”, this wonderful world of logic and magic inspires me everyday. I listen to the audio books as I try to sleep so my mind can calm down and smile to itself and if it has taught me anything it is that no matter how dark things appear at the time, if we always strive to be the best we can be, to be good and kind and brave, we can banish the darkness from within ourselves too. Thanks JK, you’re the best.