At the beginning of the “Grieving a Chronic Illness” blog, I asked the question, “Is it OK to feel grief from a chronic illness?” The answer to that question is, YES!!! Not only is it OK, it’s normal!
Several of the comments posted on the “Grief” blogs and the e-mails received on this subject have contained similar statements, such as, “I’m still learning to live with it [diagnosis].” My responses to the comments are, I was diagnosed more than 23 years ago and I’m still learning to live with it.
I’m not sure, but I don’t think it’s possible to ever stop ‘learning to live with it.’ For anyone who lived a somewhat healthy life and then receives a diagnosis for a chronic illness, it will always be different. From here on out, your life has changed. It doesn’t matter how accepting you are or what your attitude is toward the illness, the fact is, you will always compare your current life to the way it was.
Becoming ‘The Tinmom’ was not on my list of things to be when I grew up, but nevertheless, that is who I am. The differences between The Tinmom and the old Annette are many. They aren’t necessarily better or worse – they’re just different. Regardless of the length of time since my diagnosis, living life as The Tinmom will always be harder. Obviously the disease makes it difficult, but added to that is knowing the old Annette is gone and she’s never coming back. The loss of her saddens me everyday. It’s a life that no longer exists. I liked who I was, especially the physical side. While I’ve gained strengths in other areas, I truly miss having athletic abilities and being physically strong.
It doesn’t matter if your illness is severe or mild – a loss is a loss. You may not be considered disabled, but if you live with a chronic illness, you are still facing changes – something that will impact the rest of your life.
I would love to have a group discussion where all of us could sit together in a room and cry, scream, vent, bond, laugh, share, and do whatever it takes. Knowing first hand how it feels to grieve an illness, I wish I could tell you the feelings will completely pass in time, but I can’t because mine haven’t. Over time I’ve learned to adjust to the changes and replaced lost abilities with others (sometimes new ideas I never would have considered), but the loss remains in my heart.
I focus on the changes as being necessary, positive, and in some ways, improvements. I’ve said many times, “I love the person who I’ve become [The Tinmom] and I wouldn’t trade my life with anyone.” This disease has given me opportunities and a lifestyle far greater than I could have found on my own. I’ve gained priceless friendships and experienced a love for life that is beyond description. While I do face daily challenges, I’ve developed an inner strength capable of overcoming the obstacles.
A few years into my diagnosis, I began to feel my illness was a blessing in disguise. I’ve expressed these feelings on several occasions and have been challenged over and over again. As I’ve indicated in past blogs, arthritis is painful, unfair, a living beast and a thief. I would not wish it on anyone! The day-to-day trials affect those around me and cause a never-ending grief. But, when I look at the big picture, I see that I’m a better wife, mother and person than I would have been otherwise. I’ve learned to appreciate the things I once overlooked and I’m truly happy.
When my son was 4, he asked why God put these ‘sicky bugs’ inside of me. Using words he understood, I explained how I lived my life in the fast lane and I believed God put them there so I would slow down and take time to smell the roses. We continued to talk and in the end I asked if he thought I took time to smell the roses. He replied, “U-huh and you even plant them.”
I am a volunteer coordinator and I was giving an orientation to a guy. He shared that he was living in a homeless shelter. I asked for his story and he said he had been laid off from a company and then had health issues and he was just getting back on his feet. And he said living in the homeless shelter was just part of his journey and he would use this time to uplift the people there. I was so amazed!
When I was diagnosed with arthritis, I was going to college - one that caters to people with disabilities. I am so thankful that I was there because I couldn't feel sorry for myself about how bad I felt, considering the people who attended this college - one lady in my dorm had no arms or legs! It hurt like heck for me to walk and/or write, but at least I could. So I just feel blessed from this.
I have learned to be an advocate for arthritis, to become involved by volunteering, and my daughter is more sensitive to people who are different because of me. My goal, as a mom, is to grow my daughter into a "rose." One that keeps giving back year after year. So the arthritis was worth it if I meet this goal!
I love that you took the time to explore your activities and recognized something! You're exercising your brain while resting you body. Doing such activities can be relaxing which inturn causes an overall benefit to your health. I'm willing to bet, those around you will notice a difference in your personality and you will not be as stressed w/ everyday tasks.
Bravo!
You're smelling the roses. Soon you'll be planting them too. :o)
Because I have to pace myself I have to sit down several times a day. Some of my sit down activities are productive like opening mail, paying bills, folding clothes, grocery list and coupons.
In the last month or two I've started reading, doing crossword puzzles, suduko, playing Scrabble and BrainAge on my son's DS, (all which I haven't done in forever). I used to feel guilty sitting down and doing something "non-productive" but now I enjoy it and get the benefit of exercising my brain!
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