Hello awesome readers! How is life treating you? Honestly, I feel like I complain a lot, and I don't want to be that person who is forever down... I don't think I am? I think that when I'm doing a bit better physically I'm able to show my personality and have fun, but when I go through months of hard illness it gets very difficult to like myself, or to want to speak to anyone at all, because all I can think is "I'm in so much pain". I never stop reminding myself that it will get better, as it has done many times in the past, and right now I just have to hold on. This will get better as it has done in the past.
Physically, I'm fighting two major battles right now. The AVM/cavernoma in the occipital lobe of my brain, and the bone malformation in my legs, primarily my right leg. My leg is probably the worst of it right now. For those who don't already know this about me, I was born with multiple congenital malformations. I'm 46 now - when I was younger they were called "birth defects" but I think modern terminology is making changes to reduce stigma as well as to be more accurate. My father was a captain who did two tours in the Vietnam War, and his exposure to chemical warfare passed onto me, and my son, and caused a lot of damage. Dioxin alters DNA for five generations. My father suffered from it for the rest of his life after the war, and I've lived with it since my premature birth.
My right femur (only the biggest bone in your body!) developed twisted. Not to the naked eye, but the bone itself was described as like the shape of a wet towel that had been wrung out. Being the femur, this created major problems for the part of my leg that the kneecap is supposed to rest in. My shin bone broke when I was three. When I was 12 this bone malformation was first discovered after my leg snapped in two, whilst I'd been standing still, having a conversation at school. The pain was extraordinary, so bad that I fainted from it and woke up in the ambulance. Between the ages of 12 and 16 I had several reconstructive surgeries.
I've always had problems with my right leg, it's always hurt and been unsteady. Last year I saw an orthopaedic trauma specialist and I need to get back to see them as soon as possible, because two weeks ago something changed, and my hip is frequently collapsing under me, and its excruciating. It's also caused me to twist my knee and ankle multiple times, so that many days it's felt as if my whole right leg is in broken pieces.
Because the last two days my leg has been a little bit better, I'm not going to the hospital right now, but I do plan on going to the walk in centre on Monday - when the temperature has dropped a bit. Because I'm also dealing with my AVM and the many symptoms that causes, including an extreme intolerance for heat. It's 28C today, but Monday is expected to be 22C. The hospital is notoriously hot and I'm expecting a long wait, so I've made the call to wait a few days more in the hopes of avoiding some really serious neurological consequences.
Within all of this I'm trying to keep up with the relentless demands of daily life. And let me tell you, I'm grateful for my life, and even with all the problems I have to deal with, I'm really lucky, and I know it. I have a loving family and a home and that's everything. But life is still tough. We're far from rich but my health care under the NHS is so poor that we're looking into getting private health insurance.
We've had two birthdays in the family this summer, my husband's in July and son's in August. Next month, mid September, Sylvie will have her spay operation (and her little extra toe removed), which I'm super nervous about! But I'm so happy to be able to write this blog piece today, just to say hi and share where my head's been recently. I hope to do more of this in the following week, and of course, continue chipping away at my book edit. I have 58 pages left in my manuscript.
I'll post this now before I get too tired out from writing. I hope that life is being kind to you, wherever you are. Please feel free to leave a comment here or on my facebook page.
Wishing you all the best,
Erin
