There are only a handful of books written on the subject of Mast Cell Disease, and the majority of those are written by Doctors. What a joy, therefore, to come across a book written by a sufferer which is easy to read and extremely relatable. I’ve no idea now how I found it but I’m very glad I did and read the entire thing from cover to cover in just 3 days as I simply couldn’t put it down!
‘My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders’ by Pamela Hodge tells the story of a middle-aged woman who suddenly becomes allergic to life. She loses her job, can’t leave the house without reacting and at one stage even has to live in her barn as something in her home was causing daily anaphylaxis. Foods, chemicals, smells, even her husband’s sperm cause mast cell degranulation and I truly empathized with her struggle in trying to find out the cause of the catastrophic symptoms which plagued her every waking moment.
She’s diagnosed with several disorders such as Fibromyalgia, Chronic Fatigue Syndrome and even Lupus, before eventually finding a Doctor who knows about mast cells. Some Doctors are scarily dismissive and put her symptoms down to “anxiety” (we’ve all been there!) and eventually even her closest friend turned on her and basically told her she was exaggerating and didn’t know what being truly sick was 😦 Thankfully her husband has been her rock and even writes a small chapter from a partner’s perspective.
Each Chapter is headed by a quote, many of which I could really relate to, and the book has lots of links to further information. Pam discovered that, not only was she histamine sensitive she was also salicylate sensitive, so includes information on low salicylate foods and products.
Having lost 2 close friends in the past year, I found the Chapter on Friendship very moving and the anger Pam still feels over losing her best friend, and another very close friend, through just getting sick is evident. Her husband was friends with these women’s husbands, so he too has lost friendships due to his wife’s illness.
Here are some quotes which particularly stood out for me in the book:
“The bravest thing I have ever done was continuing my life when I wanted to die”
“….she told me that there are going to be cases where nothing is going to cause it. The mast cells are just going to get angry and react. I know intellectually this can happen, but on an emotional level this is hard stuff to accept. This is admitting that, in a lot of circumstances, I have no control.”
“As big as my battle with a mast cell disorder has been, my battle with the medical profession trying to fit me into what they know, has been just as big” Daryl Neal.“I was on Zyrtec for several months and became allergic to it. I don’t even know how this happens, but it does” (my note: this is my biggest fear. It wouldn’t be too big an issue if I became allergic to my H1, but if I became allergic to my H2 I have no clue how I’d live. The pain of severe reflux is like nothing on earth and without the drugs to control it I would seriously consider ending my life). “Loneliness is never more cruel than when it is felt in close propinquity with someone who has ceased to communicate” Germaine Greer.
I highly recommend this book to anyone struggling with a mast cell disease, if for no other reason than it’s always wonderful to know that you’re not alone. Available on kindle download from Amazon.