So there is no cure for Ankylosing Spondylitis, nor depression, anxiety, bipolar, fibromyalgia or Multiple Sclerosis. None for almost any autoimmune diseases I can think of. I’ve been told it’s something rampant in my family and that I must deal with it. That it explains every issue I face. I carry one of the genes associated with MS. Unfortunately, I did pass that to my daughter who now has MS. We are very lucky in that so far hers is more RIS (Radiologically Isolated Syndrome). She is being treated with injections done 3x per week. I think as of this point in my life I’m dealing with a new denial. Denial that I am dealing with worse symptoms and that my mind doesn’t function as magnificently as it used to. I know it doesn’t but I keep trying to push my limits. That’s not always a bad thing until I get stressed and it makes everything worse in my body. I live in worsening guilt everyday as a mother in that every choice I’ve made was wrong and damaging somehow.
In my mind I am sitting in a chair in an empty room and staring into the dark corner. I have nothing I can face; not even myself with a mirror. In fact the hardest thing I could do right now IS look into a mirror. I only deal with the random thoughts that pass by in record time. Flashing before my eyes in a speed that no one else would figure out what each image means. It’s impossible to remember some things yet hard to forget a lot.
I began to accept myself, who I’ve become and the choices I made in my life around my early 30’s but I am now in my late 30’s and I find myself more confused. I was given a beautiful moment of clarity and it’s being ripped out from under my feet. Accepting I have an illness is one thing but accepting that I’m progressing in that illness is just as difficult. Chronic pain is always there but the flares just worsen; it’s an inevitability that I’m finding hard to come to terms with. I knew from the beginning there was no cure for any of the situations I am dealing with but in my mind there was always hope. I think that’s a natural part of being human. It’s the same as a will to live buried inside instinctively. I don’t think that is lost even taking a last breath from suicide. I really think it’s pure instinctual for humans. An example might be when you have eaten something bad; your body retches and vomits to save you in what way it can because your anatomy knows “this is bad! I must get rid of this to survive!” Please don’t misunderstand, I do understand the feeling of wanting to die. I have been there and I have almost succeeded. No matter how hopeless I was, my body was still fighting. No matter how much I wanted to close my eyes and never wake up panic set in. I still think I should die but today I’m too lost to even go anywhere with that.
My episodes of depression seem to be lengthening to where probably 10 months out of a year I can’t even feel content. It’s also not so up and down and scattered. It’s a longer duration of mental anguish, regret, fear, loss, despondency and unrelenting painful sadness. ECT (Electroconvulsive Therapy) did get me through some rough months but my short term memory was/is awful. I still repeat things to loved ones that I’ve told them on multiple other occasions. They get angry at me and say, you’ve already told me. I haven’t had ECT since 2013 or 2014. I honestly don’t remember the last ones. If I combine my already bad memory with episodes of consistent Fibro fog I can get lost to the point I am full of confusion.
As for worsening pain and mental illness or maybe it can be called a “change” in my illness, I discover more about myself and the way my body is responding. For reasons unknown and incidentally, a nodule was found on my thyroid. I’ve been told incidental findings are usually how a patient and their doctor learn of an existing nodule. A follow-up ultrasound has shown, since that one was found in 2015, that I now have several. I do have autoimmune thyroiditis and these nodules are smaller than recognized needing biopsy. So I pay attention to any possible hyper or hypo thyroid symptoms and try to ignore the fact they’re there. It’s not hard to ignore really, especially with my memory, but this is where I get into trouble. My doctors and I count on my memory to aid in new treatments and to refer to past treatments for my health issues. So many times I’ve recalled something and it was off by a few years or several months. Even recalling numbers of weeks is difficult. Remembering any reasons for stopping or starting a treatment are long gone.
I feel like there is no time, at least in a measured sense with days and months. Everyday is an extension of the previous with a nap between. For me the day is one long existence. I can’t remember or realize what day it is until I look that morning. I want so badly to live in a numb physical and mental realm. That reminds me about a time probably over a year ago that I had a huge breakdown of tears. I couldn’t stop no matter how much I tried, yet it felt wonderful to get it out. As I’ve mentioned before, I’m not one to cry. If I am crying then it must be bad. It may not be bad for another person but for me whatever it is I’m upset about, it’s awful and intolerable. Sure it felt good then but spending that way day after day with or without tears is a lonely life. No one wants to be around me after awhile. Everyone I love gets tired of me saying I’m hurting, I’m sad, I’m in pain and I’m tired. Tired meaning- done with everything. I don’t think I’ve used the word “tired” as in, just worn out and need sleep, ever in my adult life. For me it’s always meant- this is my breaking point; if I died it would be a blessing. I can’t deal with anything anymore including my own thoughts. For physical tiredness I use “exhaustion” or “fatigued”. To me these definitions are better suited for my own body. Problem is, saying “I’m tired” has become the standard “how are you?” circumstance. No one pays attention to what I really mean nor want the real answer to “how are you?” It’s become a repeated robotic answer to say “I’m fine”. Can you actually remember every time you’ve been asked? I can’t and the times I was really struggling? I would have given anything to be truthful and have the other person not leave me until I was okay. People asking and not wanting to stick around for the real answer are why I (and everyone) began repeating the lie saying “I’m okay” or “good”.
So to everyone, I’m okay, I’m fine and I’m good. That’s what you want to hear isn’t it?