The time when you blog at 2am and it gets serious
This blog post is kind of difficult and there will be some “I feel so shit” going on here, I really do hate acting like a victim or seeming like I’m feeling sorry for myself but this is my place to vent so here it goes. By far the worst part of lupus is this one singular thing; I could deal with the rash on my face because my mom got me this unbelievable Chanel foundation before my Debs because she is awesome like that, and I could deal with the aches and pains because panodol and massages but a symptom of Lupus is on rare occasion that the patients hair starts to fall out. Back in January of this year my hair was the longest it had ever been, a curly mess of brown glowing locks down to my chest (yes I know I am being arrogant) but it was the first time I had ever really liked my hair. It is safe to say I have gone through a lot of different hairstyles, the bob, the excessive layers that verged on a 1980’s mullet (asking myself now why didn’t my mother stop me and where were all my friends?), the pixie cut, the awkward shoulder length 1960’s flicker, I even shaved the side of my head at one stage which my mother absolutely ADORED!My hair has also been many different colours; red, ginger, black, purple, a bit of blue, blonde and brown. But around January my hair was in its element, I never had to touch it because it had just started to do its own thing in a way that looked ok and everyone who has curly hair knows that having short curly hair is a dangerous place to be because you are unnervingly close to looking like Shirley Temple. Not to say she wasn’t insanely talented and adorable but it doesn’t suit us all.
When I was in hospital my doctor asked me “Has any of your hair fallen out? Or have you noticed any excess hair on your pillow?” in his weirdly monotone voice while he was wearing these stethoscope kind of things over his glasses that magnified his eyes immensely; he reminded me of a mad scientist, but he was in fact an exceptionally kind man. It was after that when I went back to my room I noticed that my light cream pillow case I had brought from home had long brown hairs on it. When I went for a shower even more came out and when I brushed my hair it really became apparent to me that this was serious. I thought my hair had just gone a bit dull because I was sick because your hair conveys your health. Apparently it happens to a little under half of the people who have been diagnosed with lupus and there isn’t much you can do about it but hope that once you get your medication in order and get your condition under control that it will stop but that’s never a guarantee. Your hair also manifests your health months after you get well again, the amount of women who have told me “Oh after I gave birth I lost a load of hair about three months later” so even though I am doing better now, my condition still isn’t under control so this won’t be going away any time soon, which is obviously not something I am pleased to know. Two days after I got out of hospital my mom brought me to the hair dressers and my then somewhat dull long brown hair was cut into a bob. I couldn’t put any layers into it because it would only make it look thinner. After I left the salon and all of the sympathetic looks I was getting in there I got into the car and cried. Not tearing up a little like an actress who is still trying to look good for the camera, big fat wet tears slipped down my ugly hot crying face in my moms car in then middle of a car park. Now I didn’t cry because the hair dresser did anything wrong, in fact she was fantastic, kind and helpful and it wasn’t because I was acting like one of those girls on Americas Next Top Model who think that when Tyra decides to cut their hair it is the end of their fucking universe, I mean I have shaved my head before, I cried because it wasn’t my choice. Everything about being sick is bad but the worst thing no matter what you have is that it’s all out of your control. I can’t spontaneously stay in my friend’s house if I don’t have my tablets, I can’t stay up late and go into work the next day and be ok, I can’t have that glass of wine if I am going to a party already that week, I can’t go lie out in the sun if I don’t have a bottle of factor fifty with me, I can’t control anything in my life without consulting with my illness if it is ok first. And I Being a person who has hated not being in control and asking for permission my whole life, can’t do anything without asking my fucking illness for permission first. And it sucks. My hair now is utter shit. Its short and thin and dull and it doesn’t curl properly anymore because it has no life in it. I have tried all the shampoos and lotions and potions but my brush is still covered in hair and I’d be lying if I said I wasn’t self-conscious about it. I miss my hair. I miss feeling it down my back, I miss being able to straighten it without being terrified about the amount that would come out, I miss when it shone when the light hit it and how it curled when I let it dry on its own after a shower. It is kind of like a slap in the face every day because you know you have to brush your hair or shower or take it out of a pony tail but you absolutely dread doing it and when you do it you wish you hadn’t. You see all these pictures on Facebook of girls with long hair or even with short hair that looks healthy and that they can style and that they feel comfortable with and your stomach just sinks. You catch a flu or something and for the next few days it gets even worse, exactly one of the reasons why I can’t do things I used to like go drinking outside in the rain for example..
It’s taken me a long time to bring this up on this blog because I like the fact that this blog is funny and takes the piss out of things in a truly Irish self-deprecating way. I like this blog to be a place where I can joke around about things but sometimes I just don’t know how to make a joke about it. At the start I joked about how I looked my Shirley Temple or how I have to use I wide toothed comb and shampoo that’s meant for horses but now that it has hit me that it’s really happening I don’t know what to say about it other than it is shit.