PERMANENT DISABILITY. That was the box checked on the form for my parking pass. I read it and was immediately sick inside. First of all, I didn't even want a parking pass. I gave in only because sometimes the extra steps held me back from being my best at our destination as a family. I would push through paying for it in the end. Every step counts. I am not even 40 and most of the time, my 82 year old Gram moves smoother and faster than me.
It's been a rough few weeks here. I keep trying to count my blessings and being thankful for all that we have. I keep cheering myself on. I struggle to do these things after the other night. My son, who was sick, woke up in the middle of the night needing me and I couldn't get there. I heard him and tried to move, but couldn't. Granted, my husband was there and hopped right to it. I know that if he weren't, I would have made it to our son, eventually. This was hard for me to accept. Harder than a Handicap parking permit.
I know that in time I will adapt and learn to navigate around things. For the longest time, I was unwilling to change anything, thinking that I would make it work. Well, I guess I can. But at what expense? I do feel like I am giving into this. Leaving me feel like I am a weaker person than I ever thought I was. There are things I am willing to accept. How I wish it was in the budget to have our washer and dryer moved to the first floor (you have no idea how badly I want this). One of our bathrooms is in need of a new shower. We already know that we will have to make room for certain "luxuries" for my, "condition". I hate this.
Right now I feel less. Not less pain, just less of a wife, less of a mommy...I feel a whole lot less in many areas. I know we have all joked about not wanting to do laundry and other simple household chores. It is a joke, until it is a reality and you can't. Not fully anyhow. And as much as we have all felt the fatigue after tending to our children in the middle of the night when they are sick, we do it because they need us, we love them and there is no other place you would rather be or any other arms you want wrapped around them. It is our job, our simple pleasures. That are often taken for granted. Simple pleasures that I am doing to the best of my ability...which is nowhere near my expectations.
I wish I could explain what having RA feels like. OK and fibromyalsia too. I could try, but honestly, unless you have it, there is no way for me to tell you. What I can say is that I have a high threshold for pain. My knee surgeon once told me (my first surgery was at 16) that if someone were to wake one day and experience the pain I feel everyday, it would bring them to their knees. But I tolerated it and to a certain extent, became immune to that level of pain. Because there was nothing I could do about it. I was also 16. Invincible and wanting to keep up with everyone around me. Even at that point in my life, there were great expectations of me and I was to deliver, no exceptions. Now, I have a husband who is insistent that I sit/slow down, relax and back off of things. I don't know how to freaking do this and be at peace with myself. I am getting my ass kicked on a daily basis, lately. I don't know what to do. I am 38 years old!
I admit, I don't like reading about my "conditions". I can't explain why. I think I want it to turn out differently. I don't want to read what is to come or how long it will stay. I don't want to admit that I am like anyone else, because I am sure, in my mind, that I would handle it differently. I think the words are contagious. I am the master of my own words and pain and I don't want to read them elsewhere...written by someone else. I get scared and angry when I read something I totally relate to, which is a lot.
For those who don't suffer, but know someone who does, please understand and keep these things in mind:
RA does not effect everyone the same. There are different degrees and advancements.
RA and arthritis are NOT the same thing!
The person with RA is most likely NOT telling you the ugly truth and how bad they are feeling.
Imagine having the flu, every freaking day. 'Cause that is what it feels like, even on a "good" day
Be a bit more appreciative of what efforts are being made to do most anything offered or requested. I guarantee you, it is greater than you think you understand. And know that something was most likely given up to make it happen.
People suffering with RA...or any disease, for that matter, are most likely some of the strongest people you will ever meet in your life.
A person suffering with RA is only doing as well as their rheumatologist listens. Sometimes rheumys/doctors need to read the points listed above as well.
Having said all this. I still do not want any sympathy. Understanding would be the greatest outcome of all. My problem is that I refuse to explain to the people who need to hear it the most. I won't give them the satisfaction of seemingly complaining. I understand that this is coming at the expense of my family and myself.
I think I need to stop waiting for some to "get it". Because honestly, I think I am just starting to. And it has been more than 2 years of living it.