Without realising, I’ve gone MIA since my return from Dubai. Not intentionally, but I think subconsciously my body went into self preservation mode. The last few weeks have possibly been the toughest in this whole nine month whirlwind. I can only put this down to the fact that for the first time I’ve allowed myself to give in to emotions that thus far I’ve managed to push away, cover up and put a mask on. For the first time, I’ve found it really difficult to put a positive slant on things and make my own sunshine.
I had a talk with a friend the other day and explained that although it sounds odd, I don’t really know who the real ‘Hannah’ is at the moment. I’ve tried so hard to be happy and cover my true feelings when around friends that the lines have become blurred between this facade and how I truly feel. This situation has changed me as a person and I don’t know who I really am, all I do know is that I don’t like this new me. I feel like I’ve been stripped of the person I built back up that managed to go to Dubai and have been crumbled back down into someone who once again has an emotional breakdown at the thought of leaving the comfort of my home.
Dubai was always the beacon of hope, that I would be able to get back and work, do my travelling and make more memories and I feel extremely resentful that that wasn’t able to happen. I feel like I am living day to day life not knowing what comes next, afraid to make plans. I feel like I have been stripped of everything I worked so hard to overcome and am once again living an isolated, bare minimum life. My thirtieth year should have been an exciting year, full of plans and steps towards whatever exciting things came up. Instead, I sleep…a lot, I cancel plans, I take 35 tablets a day, I cover up the constant pain, I feel guilty about letting people down and just feel indescribably sad.
Although so many inspirational people with alopecia seem to grow to love the skin they’re in and embrace the bald, I feel like that will never happen with me. The word ‘hate’ should never be bandied around with ease but I can honestly say I hate being bald. I do not feel like me in any sense of the word, I feel like an alien in my own skin. I am in a situation where my hair will grow to about 1mm and will then break off above the folicle. Apparently, through talking to others on the Alopecia UK site, this is the case for others too. In some ways this is even more frustrating for a few reasons. 1) Because I have a dark shadow on my head and you can see a little regrowth, people will comment and say how amazing and positive it is that this is happening but, 2) although it’s ‘positive’ it snaps off most days and I face that repeating sense of loss and frustration that my body continues to fight itself and won’t let me get back to normality. Whilst other girls get to pretty themselves for weddings, parties or day to day life, I am sat in the loft with my electric razor, shaving my head to keep up with the alopecia.
I have finally been referred to a specialist at Kings London so am waiting patiently on that appointment and feel hopeful that this may help me take the next step forward. The constant pins and needles from the neck up has become even worse and in the past few weeks was accompanied by horrific break outs which resulted in several new doctors appointments and a new course of antibiotics to get rid of a bacterial infection.
In preparing for our joint birthday party this weekend, I feel sick to the stomach about the whole event. Of course, I am excited to have all my family and friends, bar a few, in the same place, having a good time. However, I feel so apprehensive about every aspect. I haven’t managed a late night in nine months, been in a crowded and noisy environment or been faced with repeating how I am over and over. Mum has been my rock as always and helped me find a dress that I feel vaguely feminine in and I may even get my Dubai sister to help me try false eyelashes!
This all sounds very low and sad but I am trying to still face things with a smile and positivity, it’s just been more of a challenge of late. I am determined to enjoy our party, I will go prepared with ear plugs and with the idea that if it all gets too much, I can take a time out somewhere quiet!
So, if you’re coming to our party and ask how I am, I will politely reply, “I’m fine, it is what it is.” Please don’t take this as gospel, it really isn’t fine and it’s definitely not okay, but for one night, I’d prefer not to talk about my situation. I want to try and forget and just have a fun time with all the people who have literally propped me up and kept me going since October. I will dance to 5ive and sing badly to Kelly Clarkson and pretend that the reason my heels get kicked off half way through the night is because of how much dancing I’m doing rather than the pain in my joints and muscles. I will bring back the craze of chair dancing and I will use toilet breaks to take a breath and compose myself. But most of all, I will take the time to soak in the evening and be thankful for all the amazing people that I have in my life, with whom I couldn’t live without.