You should know I’m not stuck up. I have overwhelming social anxiety that makes it difficult for me to be around people and I don’t know how to make small talk. A simple, “Hi, how are you,” can cause me enormous stress if I’m not ready for it.
You should know that my mood swings don’t mean I’m crazy. I just have a lower melting point than most people. It takes very little to overwhelm me. My arthritis makes it worse. Being tired and in pain on top of all the other sensory attacks makes me even more vulnerable.
You should know that it isn’t personal when I turn down your invitations to socialize. It’s not that I don’t like you; I just don’t have the capacity to function in the typical “Hey, let’s catch up over drinks,” situation. Parties are even harder to deal with. Just know that you can always talk to me online. I’m more comfortable in cyberspace than I am in the “real world”.
You should know that simply trying harder won’t change anything. It doesn’t matter how much I want to be cool and friendly and popular, because those things aren’t me. I’m learning to like myself the way I am, quirks and all.
You should know that I care about whatever you may be going through. I don’t always have the words to express it and I may even seem to pull away from you when you’re suffering. Sometimes the empathy I feel for you becomes more than I can handle and I withdraw into myself. When you hurt, I hurt and sometimes it’s too much for me.
You should know that I’m just like you. I want to be loved and I want to be happy. I want to enjoy my life and to be accepted as I am. Most of all, I want to be understood.
Showing posts with label rheumatoid arthritis. Show all posts
Showing posts with label rheumatoid arthritis. Show all posts
Tuesday, November 8, 2011
Tuesday, September 6, 2011
An Aspie With Auto-Immune Disease
I have good sensory days and bad sensory days and in-between sensory days. Sometimes the slightest noise makes me want to scream and kick the walls of my office. Other times I can cope with whatever endless nonsense seeps in around the cracks in my door.
I have lived with Rheumatoid Arthritis since May of 2005. Through the diagnostic process, I had to face many of my fears. Talking to new people, as I was meeting new doctors and nurses and lab techs regularly, was not something I could avoid. I am single and at the time lived too far from my family to ask anyone to act as an advocate for me. My fear of needles was challenged, as I was having blood drawn a minimum of once a week and eventually had to learn to give myself injections. My fear of changes to my routine shook me more than any other. My routines keep me calm and suddenly I was helpless. There were days when I had to call in sick to work because I couldn’t get out of bed. I had to cut my long hair, because I could no longer lift my arms long enough to wash it properly and was unable to grip a hairbrush. I gained 50 pounds in 6 months because of the many medications I was taking and because I was suddenly forced into a sedentary lifestyle. There was a great deal of change in a very short time.
When the pain was at its worst, I was irritable and most people understood. Being unable to walk or hold a pencil without excruciating pain could upset anyone. When the medications began doing their job and the pain lessened, I still had trouble with sensory invasions, as I always had. It was just different now. Even on a relatively pain free day there were things that I had to cope with, like feeling sick from the drugs or being upset about my hair falling out.
For the past year, I have been in remission. Though my doctor never said the word “remission”, I was symptom free and off all medications, thanks to a careful regimen of vitamins. I had begun making an effort to be active again. In the middle of this wonderful year, I received my Asperger’s diagnosis. I began to feel “normal” for the first time in as long as I could remember.
A few weeks ago, I flare up hit me like a freight train. It all came back – the pain, the exhaustion, the depression, the helplessness – and I was PISSED. I hated having to agree to go back on the very medications which had made me miserable while saving me from further damage to my joints. But here’s something new…
Like every other part of my life, I have to look at this through my new “down the rabbit hole” perspective. I am in pain ALL the time. I take Prednisone, which makes me have bizarre food cravings, out of control hunger pangs and muscle spasms. I take Methotrexate, which makes me want to sleep for days and at times has made me violently ill. I take Mobic, which makes me sleepy and hyper at the same time. How can I deal with sensory overload when I can’t shut it out? How do I cope when the attacks on my senses are coming from within my own body?
This entire saga is playing out with frustrating familiarity, but I also find it fascinating. I can now look back on how I felt six years ago and understand why my mental response to the experience seemed so different from other people I spoke with who had also learned to live with RA.
The medication is beginning to help and I haven’t lost hope. I got my disease under control once and I’ll do it again. Fingers crossed (metaphorically, because…OUCH!) that it will happen sooner rather than later. Quite frankly, this sucks.
I have lived with Rheumatoid Arthritis since May of 2005. Through the diagnostic process, I had to face many of my fears. Talking to new people, as I was meeting new doctors and nurses and lab techs regularly, was not something I could avoid. I am single and at the time lived too far from my family to ask anyone to act as an advocate for me. My fear of needles was challenged, as I was having blood drawn a minimum of once a week and eventually had to learn to give myself injections. My fear of changes to my routine shook me more than any other. My routines keep me calm and suddenly I was helpless. There were days when I had to call in sick to work because I couldn’t get out of bed. I had to cut my long hair, because I could no longer lift my arms long enough to wash it properly and was unable to grip a hairbrush. I gained 50 pounds in 6 months because of the many medications I was taking and because I was suddenly forced into a sedentary lifestyle. There was a great deal of change in a very short time.
When the pain was at its worst, I was irritable and most people understood. Being unable to walk or hold a pencil without excruciating pain could upset anyone. When the medications began doing their job and the pain lessened, I still had trouble with sensory invasions, as I always had. It was just different now. Even on a relatively pain free day there were things that I had to cope with, like feeling sick from the drugs or being upset about my hair falling out.
For the past year, I have been in remission. Though my doctor never said the word “remission”, I was symptom free and off all medications, thanks to a careful regimen of vitamins. I had begun making an effort to be active again. In the middle of this wonderful year, I received my Asperger’s diagnosis. I began to feel “normal” for the first time in as long as I could remember.
A few weeks ago, I flare up hit me like a freight train. It all came back – the pain, the exhaustion, the depression, the helplessness – and I was PISSED. I hated having to agree to go back on the very medications which had made me miserable while saving me from further damage to my joints. But here’s something new…
Like every other part of my life, I have to look at this through my new “down the rabbit hole” perspective. I am in pain ALL the time. I take Prednisone, which makes me have bizarre food cravings, out of control hunger pangs and muscle spasms. I take Methotrexate, which makes me want to sleep for days and at times has made me violently ill. I take Mobic, which makes me sleepy and hyper at the same time. How can I deal with sensory overload when I can’t shut it out? How do I cope when the attacks on my senses are coming from within my own body?
This entire saga is playing out with frustrating familiarity, but I also find it fascinating. I can now look back on how I felt six years ago and understand why my mental response to the experience seemed so different from other people I spoke with who had also learned to live with RA.
The medication is beginning to help and I haven’t lost hope. I got my disease under control once and I’ll do it again. Fingers crossed (metaphorically, because…OUCH!) that it will happen sooner rather than later. Quite frankly, this sucks.
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