Posted 12/23/2012 5:01 AM (GMT 0)
Ever since 1999 I have hated Christmas because every Christmas season I am sick with the painful, embarrassing chronic illness of ulcerative colitis that no one can see and every Christmas season I feel like a failure. In 1999, I was hospitalized with mega-toxic pan colitis for three weeks. I went home for Christmas against the doctor’s orders because I wanted so badly to be with all four of our children.
Before 1999 my cards were sent out right after Thanksgiving, the house was decorated that first week-end, presents were then carefully selected for loved ones, special activities were done with the our children such as the German-American Society Christmas celebration, Zoolights or enjoying the live Nutcracker magic. Every year after marrying my husband, I was an active volunteer in at least one community activity for people in need. I had a lot of fun giving a children's cookie decorating party each year. Loving family and friends surrounded me. Christmas was truly full of joy back then.
After the mega toxic colitis, every Christmas became a tense struggle of trying to accomplish the same things and failing. I stopped sending any Christmas cards at all. My hands were often too swollen to hold a pen to write them. Decorating the house became a grim race of what would happen first: my collapsing in pain or my driving my family nuts. Shopping for Christmas presents often felt like I was in purgatory. The major question was how much of my shopping could I finish before becoming painfully incontinent? Being able to carefully choose just the right present was impossible. Presents were shipped later and later every year.
In order to work at Christmas, I would have to turn off my pain receptors, usually with opiates, so that I could smile and be pleasant and do my job to the best of my ability. I do not think any of my co-workers knew my breaks were often spent crying in pain huddled in a restroom at a local business until I could put my brave face back on before going back to my job. I probably should have been in the hospital but we didn’t have health insurance so I struggled to do my best for my family. I was working for just above minimum wage. It was a nightmare.
The last time our older boys were home for Christmas was the worst. Not a single card went out. The Christmas tree was not even decorated until Christmas Eve. The house was a filthy mess. I did not have the strength to clean it and no one else volunteered. Every minute of every day was a fight to just get through to the next minute. I remember it was a very tense Christmas. The presents I had worked so hard to grab were all wrong. I was too weak and in too much pain to participate in any family activities. I was so glad when the Holiday season was over.
Obviously, the older boys agreed because they have never come back for Christmas. They have families of their own now so perhaps I am being unfair.
This year after having seven organs removed and an altered digestive system created, I walked a ½ marathon the first Sunday in December. The race was way too much for me and I have been desperately sick and in pain since.
I tried to make as many Christmas presents as possible to save money and show love. Making the presents was physical torture. I cried more over those presents than anything I have ever done. It was all for nothing because they ended up costing more than buying presents.
Finally, I have lost any support network. My friends disappeared a long time ago. Hanging out with the chronically ill and unemployed is not exactly “cool.”
Our children have lost interest and are caught up in their own lives, I don’t have anything to share any way. I cannot do any activities with them. It is a rare day that I manage to eat dinner at the table. I am no longer able to make light conversation. Most of the time, I am just waiting to go back to bed.
My husband tries but he does not understand, keeps getting mad at me, and makes things harder for me because he does not have a clue how fragile I am and that I cannot adapt to any changes right now. I just do not have the energy.
I came home from yet another hospital visit yesterday in a wheelchair. The new diagnosis is IBS even though I do not have a colon. I suspect the correct diagnosis is Irritable Pouch Syndrome. The cause according to the surgeon's new and stupid nurse is "anxiety."
I have not found any cures to dealing with the anxiety created by a constantly failing body. Alprazolam stops the panic attacks but I end up with j-pouch pain when it wears off. Valium helps the j-pouch pain but then I turn into a tv watching zombie. Oxycodone helps with everything but I do not want to become addicted.
The medical situation is probably not going to change. I will try a new doctor and more tests but I have already had every test my colorectal surgeon knows about.
I have been trying to think of ways to turn this around so that I do not feel like a failure every year. I cannot control my body but I can decide only to do those things that give me pleasure. I will try to receive disability because trying to work is just awful. For every day of work I spend two days in bed. I tried shopping on the internet last year but realistically it is out of my budget. I do not have all of the solutions yet but at least I finally know why I have grown to hate Christmas.
I know none of you can help me with this but it feels good to just let it all out.