Some Things Are Easy, Until There Not
My health has brought me a fear like none I have ever know. Placed me in a loneliness that couldn’t be filled even with a thousand people in it. Yes it’s also given me a joy that can’t be compared to anything I know. It’s a constant process of learning. Never knowing from one minute to the next how anything will make me feel.
Every new experience I have, only brings more light on to what’s happening to me. It leaves me with a million questions and no answers seem to be in sight. Those of you who read this, often are complete strangers. Some of you have gotten to know me on social media. A smaller few might feel like they have a deeper connection because they read everything I write and it hits home. My family, I’m sure if they read what I write, and if they do I am definitely not sure if they really realize how hard this all is on me.
It’s a lonely place. Going to Doctor appointments alone, Urgent Care and ER trips alone. Only a stranger leaving you voicemails of them singing Softy Kitty. I hope you are familiar with Big Bang Theory. If not, Soft Kitty is the song Sheldon wants sang when he needs comforted. I feel like my life is a real-life episode of House, and have even had a Doctor tell me that. I might seem to have it all together, but honestly, I’m so lost and so scared. I’m a little girl crying inside wishing my mommy and daddy could hug me tight and promise me it’s all going to be okay.
Instead, I seldom talk to my mother because there has been a lot of strain on that relationship over the years. Why is irrelevant we just butt heads and I need my sanity and health more right now. I just don’t have the energy to emotionally deal with the strained relationship. So I just put it on the back burner for now. My dad forgets that I even have a birthday and my stepmom basically calls me a liar and shames me for posting facts on my Facebook page. When I don’t delete it she just blocks me. So I feel like I have no parents at all.
I have a wonderful friend who I don’t see enough, and I have Barbara my children’s grandmother on their dads' side. She gives me support and cares for me and all the kids, but it’s also difficult because we are all she has left and I think it really scares her when I talk about my health. So I get to talk to strangers and people I have only met a handful of times. I love my community of warriors but it’s just not the same.
I try not to bring any of this up, because well, what’s anyone going to do? They can’t make me feel less scared or lonely. That’s an unfortunate part of having an illness nobody can see or grasp how it truly impacts you. I’m working hard at being strong, a better mother, a dependable friend, maintain my home and job. I feel like it’s an impossible task though. Dishes pile up, laundry doesn’t get done. My sheets stay on my bed far longer than they should and my kids are lucky if I cook a meal every other month.
I see and feel a decline that I don’t really grasp. I do have brief moments at work that suck the life out of me it seems, but few and far between. I have been lucky, that’s not always going to be the case. In fact for no apparent reason, I was just dealing with extreme fatigue the other day and literally fell asleep at the nurses' station beside two nurses and an entire ER full of other co-workers and patients. I was doing everything I could and in the middle of the the conversation I just went out. For a minute that’s it. It happened again later that night as well. For it to get so bad I can’t function at work is new for me.
Then there is a whole new aspect I’m trying to wrap my head around. I have this tiny human in my life, and I have raised 3 kids, put a great deal into the 1st year of life to another and carried around all my great nieces and nephews at some point. What I’m getting at, is holding a baby, carrying a car seat, moving a playpen or even setting it up, these tasks should not beat me down. Yet my arms grow weak, my back aches and I literally feel like I can’t breathe and that my heart is going to beat out of my chest. I shouldn’t be so depleted from such an easy thing.
Now let me back paddle a minute, cause I know all my moms or solo dads are thinking easy, what the heck! Children come in all types, and some get it easy, while others not so much. What one calls a challenge another will not. So basically what I mean is, it’s easy to do what’s natural and take care of your kid. Then you have heard me use this phrase before, ”until it’s not!” I had a mixture of both over the years and now mine are teens and the past two years I experienced some of the most challenging moments but also some of the happiest and easiest moments.
While my three were babies, they were all easy, and perfect. I mean sleeping through the night in a matter of weeks to a month. Not really crying inconsolably. I recall one incident with James and one with Keith. My daughter, none, she always loved everyone. Then those young early school years hit and I was a single parent and suddenly my world fell apart. I had no idea what children I was raising and I’m pretty sure they wonder what the hell happened to their mother.
Then I got sick, and life threw every dramatic curve ball it had at me. Their dad getting felony meth charges. Me realizing all my friends and family had grown and moved on to life without me in it, and I had no idea how I fit in anymore. The kids grandfather dying, my second divorce. An abusive relationship. My children’s father dying from meth use. My children and I falling completely apart before finding a way to put ourselves back together again. Losing a job. Financially struggling. Getting sicker, and feeling as though my passion for hiking was ripped away from me.
At this point, I pretty much decided that there was nothing AS could throw at me that I couldn’t conquer. Not after all I’d made it through. I have been finding myself doubting that lately. Who wouldn’t with the streak of bad luck I have had...maybe that’s a story for another time. Yet here I was wondering how I’m going to move forward in this new situation I found myself in. I didn’t exactly go looking for anything. I’d pretty much decided I never needed another serious relationship again, and I was okay with that.
I can’t help but fear this good feeling could end. We all know to well how easy it is for anyone to walk away from us because it’s to hard. He is sitting next to me right now, oblivious to the fact I’m writing this. Not really, he is focused on driving. The 10 hours with a whining half crippled sick women by his side, just to take me to a Spondylitis seminar. Yet so many turn their heads as if my situation is no more than a common cold. It’s to difficult for others to grasp how this all makes me feel.
Knowing that some of the people who matter the most to me don’t check in on me, or ask if they can do anything to make a day a little easier for me, well it’s just frustrating and hard. My kids don’t, occasionally friends will. The thing is how do you tell people I just wish you’d ask me if I’m doing okay. Or it would make me feel so good if someone offered to help me with the grocery shopping or my laundry. Why, because these tasks take so much out of me. Cooking dinner, I’m done. Forget it, I’m not doing anything else. I want to do all these things, but I want to have a social life, and a family life, and a work life. It’s just not physically possible for me to do what everyone else does in a typical day.
I went from sleeping maybe 3 hours a week and being so active I completed multiple hiking challenges in less then 12 months, and that was no easy task. To sleeping 12 plus hours a day because my body physically will not function. I try to get things done, but it takes me forever because it hurts so much, but more so because I feel like my heart and lungs are being squeezed in a vice and I’m near collapsing because I can’t get enough oxygen. How do you explain that the someone when you are not turning blue?
Yes I follow slowly behind the crowd, because I physically can't keep up. I’m scared because as someone who has given many times to help care for not only my children but someone else’s, why now, why is just carrying a baby so damn hard? I’m lost and I’m confused because nobody has answers. Yet I’m spending a piece of every single day trying to find a way to change this so others never have to feel what I have. I feel sometimes like nobody even realizes how hard I’m working. Because the truth, nobody acknowledges it. Aside from the occasional stranger.
My determination will not stop though. I just hope one of these days I’m going to write the story that grabs all my loved ones attention and makes them say, maybe this is serious. Maybe I need to help raise awareness. Maybe I need to be more aware and just check in occasionally. Don’t get me wrong, some people do. It’s just difficult to really feel it all the time. I’m sure this comes off as me complaining, but this is how I express myself best. This I know hundreds of others relate too.
I know that some of my family read my blog, and I love that they do, but this will come off strong, bitter and possibly accusatory. It’s not though, I know the people in my life that put in an effort and they know who they are too. I just don’t put names to anything because of the hundreds of strangers that read this, they don’t have a clue who my family is, and I’m not trying to be rude, I’m just trying to say how I feel. Share a piece of my AS journey with others that can relate. That’s it.