First, some wonderful news. No surgery! Two experts strongly disagree with the diagnosis of severe joint damage. Therefore I will go forward with muscle and joint injections to relieve the pain and possibly a splint to wear at night. I'm very grateful I do not have to undergo such an invasive and risky surgery.
So overall life is good. I am working every day to control pain and take care of the baby. Unfortunately I get tunnel vision easily when it's "just do what I need to do in order to get through the day." The days easily blur together and I forget to notice what's going on around me. I've noticed lately that I've hardly talked to a soul other than my husband and doctors. Where did my social life go? It's not that I had a very active social life but I did talk to people in the neighborhood and occasionally hop on the phone to chat with people. My husband travels a lot and I now go long stretches without seeing or talking to anyone unless I have a medical appointment. It creeps up on me and before long I am overcome with intense feelings of isolation and disconnection from others.
Before the baby, I was able to maintain my focus long enough to work on stitching, taking pictures or watching a movie. Now it's very hard for me to do any of this. At the store today I had to look at my list over six times to remember the two things I needed to buy. That is extremely frustrating to me because I haven't always been like this. It's hard to adjust to a new reality when you lived your life with intelligence, drive, energy, talent.
I feel like any time I express an honest emotion in response to "how are you?" it makes people very uncomfortable. It's hard to see the pity in their eyes or the abrupt change of subject. On the other hand, pretending everything is ok (as I like to call it, life is all sunshine, rainbows and unicorns!) feels like I'm being fake. People may see me as thinking negative about things. Sometimes I am guilty of seeing the worst in my situations. However, no one knows what it's like to have someone cut you off in mid-sentence to say something like "but you ARE ok, look at all the x, y, z in your life! Concentrate on that!" When someone does this to you, you shut down. You realize that you can't confide in this person, that you can't express an honest emotion because it makes him/her uncomfortable, therefore you quit trying. Since you can't be this happy go-lucky person that you think everyone wants you to be, and because you are clearly bumming people out, you quit talking to just about everyone in your life. Granted, no one wants to talk to someone who is a perpetual Eeyore, always complaining and never trying to better his/her life.
This article really nails it on the head:
"Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness.
The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the "miracle" of modern medicine, and somehow the lack of recovery is often perceived as the patient's fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, "Stop complaining. You simply must adjust." Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself...All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target...Sometimes, it is useful in social situations to present yourself as a Pollyanna. When meeting new people and situations, it may be an advantage for you to let others think you have mastered your disease. The anxiety of other people is reduced by not having to confront illness. The danger is that this Pollyanna image may create a barrier between you and the people who can offer real help.
The resignation viewpoint holds little hope; the Pollyanna viewpoint holds little reality."
This article is so interesting to me and I wonder if part of why I'm stuck in this cycle of isolation and sadness is because I've never found a truly understanding and supportive network. My husband has been wonderful and a few friends are really good people. But they don't understand things from my perspective. And my family is another story. Recently I saw my father and he asked me if the doctors ever really figured out what is wrong with me. I was stunned by his question. I was diagnosed THREE years ago. I shared with my family THREE years ago my new reality. However no one in my immediate family has ever talked to me about it. I feel like they all view me as a hypochondriac. Indeed, I myself thought I must be crazy and it was all in my head, although blood tests continued to prove otherwise. (My brother is also suffering from very real and serious health issues. However the reality of his condition is always glossed over in conversations between he and I. I know part of it is that he doesn't want to talk about it or worry me.) Perhaps it's the mindset of "if we don't talk about it, it's not really happening."I think the more you try to act normal, the worse you feel. But this article is resonating with me and gives me hope. Just to know that others have experienced all these emotions I feel is empowering. And it makes me think that I need to connect more with my brother. He is the only one capable of understanding my point of view and I feel like we should lean on each other more. Time goes by so quickly and before we know it, we won't have much time left together.
I really do not expect anyone to read this which is ok. It's long and a bit discombobulated. However it was an eye opener for me and I wanted to share it, in the small chance that someone else out there can relate or needs help. Have a good night.
