I was looking at book recommendations by other chronic bloggers, spotted this one and the title spoke to me immediately so off I went to the library with my huge list of books that I wanted to read, books about chronic illness, positivity and just funny books to make me smile. I had to whisper the title of this one to the librarian and still got funny looks from the pensioners around me, I seem to be the only person who is not either under 4 or over 65 who uses my local library! I have no idea why, it’s so amazing. I can get most of the books I’m after as well as audio books for my car, plus if you log onto the website you can get audio and ebooks books to download to your phone or tablets. I love my local library! Unfortunately they didn’t have it, so I ordered it from Amazon and was very excited when it arrived. I’d just finished the first Jenny Lawson book and was in the mood for another hilarious lady telling me about her life and her health.
Awkward Bitch – My life with MS by Marlo Donato Parmelee
This book is the story of a woman who lets us into her life as she relives the journey of symptoms and diagnosis of MS. She calls herself with symptoms the Awkward Bitch, hence the title of the book. She has the most amazing way of describing her symptoms, which include scary problems with her eyesight, numbness in various parts of her body and extreme clumsiness, that make them seem both terrifying and hilarious at the same time. She has amazing support from her husband and her artistic and musical heart comes across in the descriptive language that she uses. I love how she explains her feelings of loss as she is unable to wear high heels during a relapse, and how she fights to continue to wear make-up and look like her usual fabulous self even though she is falling apart and terrified as she starts to loose control over her body and her life.
I totally connected with Marlo and finished the book in 3 hours as I continued refilling the bath as I didn’t want to put the book down! I love how she would have little conversations with herself when she was really struggling and tell herself to get up, get out and get on with it. One of my favourite lines is “fuck it, I still look good” which she says to herself before a concert in Trafalgar Square, she even names her lesions “Abigail and her friends” and has arguments between Fun Marlo and Sick Marlo. I have these conversations all the time! Old Victoria wants to go out and have fun, Old Victoria wanted to go to the park today with my family, but Stick Girl Vic knew that I couldn’t manage it and needed to go home after we’d had breakfast together. I have a constant battle between the old me who could do pretty much whatever I wanted, and the new me who knows that I need to look after myself better and stop pushing myself so hard. Marlo has the same battles as she carries on going to her job in a fancy retail store central London on public transport even when her vision is completely mental! She continues to work on her music, live her life and push herself beyond her limits until she eventually realises that she needs to take better care of herself as her relapses keep coming back full throttle. She also realises that she cannot give in to MS and continues to fight for the best medical care as well as her job and her musical career.
This is the story of a transplanted American who moves from New York to London to pursue her musical career and soon discovers that she has relapsing remitting Muscular Sclerosis which causes vision, limb and chronic pain challenges alongside her battle to understand and affect the bizarre, frustrating and often stressful NHS systems all the while trying to come to terms with how her life has changed and continuing to live and have fun. After reading the book I wanted to learn more about this amazing lady and have found her on You Tube. I am going to watch her advocating for MS and educating people on this progressive and frankly terrifying neurological disease with the humour that she shows throughout the book and has inspired me to name my old self as Old Victoria and my new self as Stick Girl Vic, my superhero persona, my new self that has been through similar experiences and challenges to Marlo, that has faced her body changing and behaving in a decidedly uncooperative way, that has had to adapt and learn to advocate for myself within the benefits, NHS and employment systems. I have had to change jobs because of idiotic and incorrect assumptions about my health. I have had to argue with medical professionals to get the best care that is available. I have had to adapt, explain and inform the people around me about my health as ultimately I still look fine. I can put on layers of make-up and a smile and fool everyone that I’m my normal self, but underneath all of that I am in constant pain and am constantly fighting against my body, stretching what it can currently do to what I actually want to do, then I have to pick up the pieces and try to put myself back together again.
Like Marlo I have found that looking sick makes it easier for other people to understand what you are going through and since I have had to use my walking stick it seems to make it easier for people to understand that I am not in great health. I get asked if I’ve hurt my back or had a knee or hip replacement quite often and people seem to want to ask me about it. Personally I don’t mind this as I like talking, meeting new people and telling them about invisible illnesses but other people don’t really like it. Plus the pitying looks aren’t fun. Yes I am young (ish) yes I have an incurable chronic illness and yes I had trouble walking, but I don’t want pitying looks. Like Marlo I just want to be me. I’m going to get on with my life and continue to talk about my health and raise awareness for invisible illnesses. I am also going to continue to live my life and have fun. To try new things and enjoy things that make me smile. I’m going to share that joy and happiness and continue to read about other fab women who are doing the same thing.
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