Not long after my diagnosis my brother came to see me. He spent a couple of hours reassuring me that while these diseases may ravage and take my body that I am so much more than the body I reside in. Nothing can take away who I am. I believed him and took great comfort in those words. I was indeed more than my shell, I was more important than my ability to do housework, do laundry etc. ...all of the things that people love about me are still here. This same message was given by just about every member of my family and the majority of my close friends. Today I realized...THEY WERE WRONG!
These diseases have changed how I react and I quickly become overwhelmed, I have to say I do not like the changes. I am becoming somebody that I don't like. Worst of all I don't know if there is anything I can do to change it and that scares me more than all of these horrible diseases combined.
The most important roles in my life are those of being a mother, wife, daughter and sister. I cherish those roles and they mean more to me than words can express. I have the most amazing children, husband and family. All of these relationships have changed and not for the better and the cause lies with me.
I am not sure if it is the chronic pain, my medications, the depression or the actual diseases themselves but the changes are clear. The three biggest changes are that: I have no patience, I have no tolerance for loud noises and my needs lead me to isolating myself from others. Lacking patience when you are the parent of young children is not good. Lacking patience when you have a child with a severe anxiety disorder and ADHD is unacceptable. It can result in my yelling which before all of this rarely happened which leads to upset children. Yelling at children is not something that I believe in and is a very ineffective parenting tool. What disturbs me is that it just happens. It is an automatic reaction/response to what is before me. I have to find a way to control this automatic response because it is something that I am very uncomfortable with.
As for loud noises it can be wonderful laughter, kids too excited running and playing, it can be the kids arguing, a crying baby, too many sources of noise (tv or music in the background, people talking, kids playing) and it creates an immediate response of upset and confusion. I just can't manage it at all. I have often left a room in tears to go to a quieter place (usually my room or outside on the deck if the house is just too noisy). I feel like a kill joy, they are just having fun and I want them to be happy and to have fun but I cannot tolerate any noise..ugh
As for the isolation it can be for a variety of reasons: be as a result of the noise, it can be the pain is at an unmanageable level and I need to go lay down in the quiet, it can be my hips that cause such pain from sitting or walking through out the day that I need to lay down (this usually happens by 8pm most nights). As for reaching out to others (family and friends) I rarely pick up the phone anymore to call anyone. This upsets my mom more than anyone and I hate that. I have nothing to add to conversation. I go days and sometimes weeks without leaving the house other than for dr's appointments. I am sick of talking about my illness and treatments and well if I am honest, I just don't make for good company right now. I want/need to be alone.
My daughter (the youngest) has her own challenges with a severe anxiety disorder and ADHD and has required an extremely high level of support for the last three years. She can be so high needs that some times it has felt as if she just sucked the life out of me and that is when I was healthy. My patience was very much needed and appreciated to provide her with the level of support she requires. She is not used to me being overwhelmed, putting myself on time outs or yelling and with her issues takes all of them to heart.
Returning to school is one of the most difficult times of year for her. This year as been worse because it has taken two weeks to get her school to put the correct supports in place for her. She is also extremely anxious about leaving mommy at home by herself in case I need help and there is nobody here. I have addressed things with the school once again (3 meetings, one before school started and one each week of school) and they have finally got things sorted out there. We constantly reassure her that I have all of the support that I need with family who all live within 5 minutes of here should I need them. Add to this the fact that she seems to be going through a stage that has her very uncooperative, argumentative and did I mention uncooperative? and add with that no patience, no tolerance for noise and isolation and you have a very unhealthy mix.
In all of my reading about my diseases (Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis) I have never read about the impact on chronic illness on families. How do we help families especially children to understand about these illnesses? What tools / strategies are out there for individuals like myself to deal with these issues that come forward when dealing with chronic illness?
I hade a conversation with one of the Arthritis Society Social Workers earlier today around all of these issues and she has reassured me I am not changing. If we took away all of my health issues I would go back to the me I know and love. It is a stressful time mourning and coming to terms with all of the changes, the deformities, the things I can no longer do and the number of things I have to find creative ways of doing. She believes I am being much too hard on my self as the incidents are few and far between. My relationships with my kids remain healthy and strong. I have already apologized to them and now that I see the pattern in my behaviour I have the power to count to ten before I react..allowing time to think rather than react strictly on emotion. I know she is right and it isn't as bad as it feels. It is just so unlike me. I think the real issue is that it is such a big adjustment and I am scared that I am going to lose myself in the process watching my body deteriorate.
Now that these areas have been identified I need to do my best to address them. I really do hope that I am wrong and that I can find a way to deal with these in a more positive way. Right now it feels like I am fighting these diseases and losing...and my family is losing. That doesn't sit well with me.
I would really appreciate hearing any thoughts, insight, feedback, strategies, suggestions or sources for information that you are aware of.
© 2011 Rhonda