I have a particularly difficult time reaching out to people when I’m not feeling well in the head…I can talk about the physical stuff with greater ease because pretty much everyone can identify with that and it’s not so scary to listen to…it’s just human. The emotional/mental health stuff seems to take on a sort of threat to people….or maybe it’s just my perception of things…those are often slanted through PTSD goggles so I’m never 100 percent sure I can trust them. I am a dweller by nature which becomes obvious quickly to those who come to care about me, so I understand their aversion; they don’t want to watch me drown myself in misery when they know I can work with it on a much better and healthier level. Still though, I don’t feel much like I can change that. I can stop talking about it, certainly, and can just put on a different face and go about my day, but that does not change how I feel, just how I appear. Is that better? I suppose it is to the person who is desperately back peddling out of my line of sight to avoid the conversation I’m trying to have with them. Generally, I just don’t start the conversation in the first place. I feel like I’m treating a friend as my therapist when I do that and I don’t think that’s fair, so I just keep the thoughts inside me. Mike used to say thoughtless things about how he was providing me with free therapy when I went to him feeling troubled. It made me never want to share anything with him again, but, I think that was his point. Anyway….I’m sure you understand what I’m saying, it’s hard when there’s no one to talk to and you want to talk. Although I don’t suppose there is anything to talk about. I feel crappy and that’s about it. If you know me and happen to care about me, you probably already know why so what’s the point of rehashing it all outside of my head again? It will just end up making you feel worse and me feel the same in the end.
My rheumatology appointment went much better than anticipated yesterday. I think my family doc must have said something about how must my last visit upset me because the formerly rude and dismissive rheumatologist was very kind and supportive. She showed renewed interest in my case and talked about future planning to get things under control. She thinks the exhaustion and fatigue has to do with whatever underlying issues I have going on.
“Your spine is terrible and your headaches, neck and shoulder pain are clearly coming from that issue,” she said. “but if we take your spine and head out of the mix, you are still left with a lot of complicated and ongoing issues to deal with. I want to figure out what is causing those things.”
The spinal stuff can’t be helped, I know that. Surgically there is no option so it’s a matter of pain control and trying not to lose too much range and mobility between now and when I’m finished with this body. It will only get worse, not better, so my coping skills are going to have to continue to increase as I go. I think I can do that for a while yet, so no worries there for the immediate future. “The rest” as far as my doctor saw it includes the joint pain, the weird discolouration of my arms and legs when I get cold, the constant overheating and hot flashes (which, although related to hormonal changes in my body, are not necessarily related to peri-menopause like my GP thinks, says my rheumatologist), the depression to a degree and the excessive sleep/fatigue/exhaustion issues. “But I’m not *fatigued*,” I told her. “I’m shutting down; dropping off to sleep on my feet. I’m losing consciousness while I fight to stay awake in the middle of talking to someone at noon with a coffee in my hand and 20mg of Dexedrine in me.”
“Yes, but if you’re not sleeping at night, and by that I mean restful sleep, not this pain or dream interrupted, waking every 20 minutes sleep you describe, what else do you think is going to happen? Your body shuts down because it needs rest.”
She made sense there. I imagined just staying awake for weeks on end without all the other complications and can imagine my body would shut down much like it wants to do right now.
“Do you feel rested when you wake up? Even after a 20 hour sleep?” She asked.
“Maybe for a few hours. I’m not sure though….I’m not sure ‘rested’ is the right word, but I’m not actively fighting sleep immediately upon waking.”
She just stared at me with her head cocked to one side, waiting for me to catch up to her. I saw her point. She went on to tell me that fatigue is important when it comes to the body’s ability to fight pain.
So, in the end, she was pleased to hear about the sleep consult next week. She also happily pulled up all my blood work from last appointment and said she was going to repeat all the tests to see if anything has even slightly changed. She’ll see me back in six weeks and we will go from there, she says. They took vials of blood from me and I left the clinic feeling spacey and exhausted then I went home after work and slept from 5 pm until the alarm went off at 6 am the next day feeling like I’d just gone to bed.
I’m feeling pretty lost in all of this right now. Work is nothing but stress and a pounding sense of failure, home is fear and stress and guilt that we haven’t managed to provide Colt with more stability than one single family of people who we can no longer count on like we have all these years. Things with Dayne are fine but he is one to roll with the punches in life. We could pretty much not speak to each other for a year and nothing would really change between us. He’s as solid as a rock, that man, and I know he will always, always, always have my back.
I’m a little depressed, a lot in pain and everything else feels suspended in the air.