Today I met with my PCP (Primary Care Provider) to discuss my progress since my last procedure. The last time we spoke, it sounded like I was headed for the pain clinic, but the visit went well and we decided on this 6 month plan. I must say, I am feeling optimistic about this whole thing. To say I expect to be pain free again in my life would be a lie, I would just like to get through 4 of the 7 days a week without the help of a narcotic. Big dreams, I know. (Sarcasm is my friend FYI)
Anyway, after I met with her and we hammered out this plan I went to see my counselor Nancy. We were discussing this new 6 month plan and how I felt about it, what I felt my difficulties would be and the like when we fell into conversation about how my condition effects the people around me. I was explaining how I can understand that this is hard for my family to watch me go through and that I understand why they say the things they do sometimes. Example: my husband thinks that one day I will be pain free. I love this about him, this optimistic “it’s all going to get better” attitude is great (it is probably also the reason he is so damn calm about everything) but in this particular situation it is just not realistic. This created some ….. friction…shall we say in our home because while I am celebrating my 1 narcotic free day my husband is dreaming about my pain free life. Which sort of bums me out. It reminds me of how I would feel as a kid when I got all excited about something I did, just to have my Dad tell me all the ways I could have done it better.
Anyway, I was venting to Nancy about this when I said “This isn’t about him, or my mom, or my friends, this is about me!” For a moment I just sat there and then I said “That feels odd, I mean, I guess it is about me, but it is about them too. How they feel about this, how my pain affects them too.” Then I started to backpedal and give reasons why they should be allowed to share their expectations of a pain free life with me. I was reasoning that it was not fair for me to expect that they keep their thoughts -though less than helpful for me- to themselves. That’s when Nancy stopped me and said “This is about you. Yes, your condition does affect all the people around you in some way or another, but utimately this is about you. So what you feel, what you need to help you cope with this is what matters.”
The woman has a point. Yes, it stinks that my family has to see me suffer. Yes, my husband probably hates this every bit as much as I do but the reality is that no one is living this the same way I am. No one. To be honest, I have been a little more aware of this since my last surgery, but I hadn’t really laid it out so clearly for myself. I am always worried about how I affect the other people around me: do my kids notice the days I lay on the couch more? Can my mom hear the fatigue in my voice when I say I am a fine? Does my husband notice the constant ice pack in my sweat pants? Is it better to cancel plans with a friend last minute because I am just not up for it? Or do I go and pretend the whole time? Can they tell I am faking it?
The truth is a used to just plow through everything so I could feel as ‘normal’ as possible. But 9 days after my last procedure I got an email from a friend that changed my entire outlook on my situation. The basics being that I wasn’t as active in our friendship as I used to be. That was probably true, and, to be fair probably still is. Before the surgery I was in so much pain (that’s hard for me to say….not sure why). I need to emphasize this though. I was in SO MUCH PAIN. It was awful. I stopped going to the gym, to the mall, out with friends. I stopped living. I worked and then I went home and did what I needed to do to take care of my family and that was it. I cried a lot and rarely slept. It was really overwhelming and just before we finally decided on the procedure I felt like there was no light at the end of the tunnel for me. It was dark.
Things have been about 60% better since the surgery but I don’t plan on jumping back into life again-at least not the way it was before. This time I plan on doing things that work for me. Lifestyle Adjustment is what my PCP calls it. At first the idea of ‘adjusting’ my life around this condition really upset me. But now, I feel a little empowered (small giggle). Like now I have a reason to take better care of myself (crazy right? I need a reason to put myself first?!?) and I am passed the point of being upset with people if they don’t understand it. Like this email I got. Clearly, she had no clue the level of pain I was dealing with every day. If she had, maybe she would’ve understood, then again maybe not. Is it her fault she didn’t know? It’s possible, but I also did a pretty good job of putting on the “it’s all good” face and plowing through life. So in light of all of that: here is my first Lifestyle Adjustment:
I promise to be honest with myself and the people close to me when I am having a rough day. I promise to put myself first and rest if/when I need to. To take a few moments of quiet when I need to, and ask for help with tasks when I need it. This way, I can spend more time enjoying my life and less time in feeling the effects of pushing too hard.
What I need from my peoples: to understand that it isn’t personal, that I am not avoiding you I am simply taking care of me.