Today (Sept. 14) is the last day of Invisible Illness Awareness Week. One of the things you can participate in is a meme at http://www.invisibleillnessweek.com about your own invisible illness. This is my submission in support of advocating for the millions of people who suffer from invisible chronic illnesses.
1. The illness I live with is: paraneoplastic neurological syndrome. What in the world is that? Well, I had/have Stage IV metastatic melanoma. While I have successfully fought this disease, it triggered an autoimmune response in my body that produced weakness and symptoms much like fibromyalgia and chronic fatigue syndrome. In addition, I also have a number of neurological symptoms including ataxia, myoclonus, peripheral neuropathies and significant autonomic dysfunction. While my illness is now visible (only because of the mobility aids that I require), there have been times over the years that things have been better and I started to have hope that perhaps I was getting better. Now, I have come to accept the “new normal” and make appropriate adaptations so that I can go on living.
2. I was diagnosed with it in the year: 2010. My home neurologist originally made the diagnosis during a 30-day hospital stay in October and November of 2010. Since then I have been in constant pain with overwhelming fatigue nearly every day.
3. But I had symptoms since: at least 2009. The year before I was also hospitalized with a progressive neurological illness that began with left drop foot in late summer 2009. It was diagnosed as Transverse Myelitis. It probably marked the beginning of the paraneoplastic syndrome that had been triggered by the cancer, first diagnosed in 2008. But I really think that there is some genetic predisposition to autoimmune dysfunction in my genome. My daughter has systemic lupus, another autoimmune disease that can be “invisible” but devastating to a person’s ability to live a normal life.
4. The biggest adjustment I’ve had to make is: to accept the fact that there is no “cure” for what is wrong. As long as I searched for something to “fix” everything, the illness controlled me instead of me controlling the illness.
5. Most people assume: that since the cancer is in remission, I should get better. But just because there is no evidence of the cancer, there still could be a hidden tumor. Or, the trigger that made the autoimmune system go haywire can not be turned off.
6. The hardest part about mornings are: just getting out of bed. I have adjusted by lifestyle to a strict routine that includes getting up, getting showered and clean and getting dressed. It takes a lot out of me and it would be so easy to just turn over and stay in bed.
7. My favorite medical TV show is: House. I don’t know if you ever noticed but paraneoplastic syndrome seemed to come up a lot on that show.
8. A gadget I couldn’t live without is: now my power wheelchair. But for years it was probably the tool to reach things that fell on the floor and that I could (and still can) use to help me dress in the mornings.
9. The hardest part about nights are: the pain and the tossing and turning trying to get some restful sleep. It seems all the pain is worse when you go to bed. Maybe it’s just quiet and lying there with nothing else on your mind, you notice it more. But I think it is worse. Both the nerve pain (itching, stinging, shocks, etc.) and the muscular-skeletal pain.
10. Each day I take _10_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: am open to it. Sometimes massage therapy is helpful but sometimes it only makes things worse. I do think lifestyle including diet and a doable exercise/activity plan is absolutely a must. Once you become isolated and stop participating in things, you have pretty much lost it. I will never give up!
12. If I had to choose between an invisible illness or visible I would choose: a visible illness. Since my illness has become more visible, my needs have been better met. People understand more. When it was invisible, I would get those dirty looks when we parked in the handicapped spaces at shopping centers and restaurants.
13. Regarding working and career: I worked as long as I could. I had to retire on total disability in 2011. I recommend that you keep working as long as you can. And when you can no longer do a regular job, find something else to be your job and part of your regular routine. For me, it’s been a combination of things including writing this blog.
14. People would be surprised to know: that I have made more friends and traveled to more places since getting sick. That’s partially true because work took up most of my life. I worked hard and had many 12 hour days. And it is also true because my illness has taken me to places in search of answers, like the Mayo Clinic in Minnesota.
15. The hardest thing to accept about my new reality has been: how little I can do most days and how much the illness has affected my ability to think clearly. I hate brain fog!
16. Something I never thought I could do with my illness that I did was: complete a comprehensive family genealogy including publishing a book. I also documented proof to support membership in a number of lineage societies including the Sons of the American Revolution.
17. The commercials about my illness: don’t exist. And I can only chuckle about all the claims made by the drug companies in their commercials about Fibromyalgia and Chronic Fatigue.
18. Something I really miss doing since I was diagnosed is: talking a long walk. I used to do a lot of thinking on quiet walks around the neighborhood or through the woods. I also miss being able to keep up with my family and my grandchildren.
19. It was really hard to have to give up: my job. I was a healthcare executive for more than 30 years. My job gave me my purpose. It was hard to find a new purpose when I could no longer work any more.
20. A new hobby I have taken up since my diagnosis is: blogging, Facebook, Pinterest and genealogy.
21. If I could have one day of feeling normal again I would: hug my wife very tight and do as much with her as I possibly could. We have been married over 40 years. She has been my caregiver. I have felt guilty that I could not do the things with her that I used to be able to do.
22. My illness has taught me: to appreciate the little things I life. I could be bitter. There was a time I was frustrated and depressed. But when I accepted my illness and decided that I was still living for some purpose, I have been able to find happiness and joy despite the pain, fatigue and other suffering. It’s been hard but it can be done.
23. Want to know a secret? One thing people say that gets under my skin is: “you just need to exercise and do more, then you would get well”. I am active. I do a modified exercise plan that I can do and not have major flare ups of my diseases. They should spend a day in my shoes before they give advice.
24. But I love it when people: try to understand and want to learn more about my illness. People can not really understand what you are going through unless they experience it themselves. I know I would not have understood before I got sick.
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: to cling tight to those closest to you and to listen to those who are trying to help you. Getting a diagnosis is not the end of the journey but only the beginning. Many times there is not a clear treatment plan. You must accept your disease in order to control it. It is hard to do with all of the anger and frustration that you feel.
27. Something that has surprised me about living with an illness is: how many other people are out there battling the same problem. There is so much support online. I have found support groups were I can vent. I have found work in writing a blog and administering a Facebook page. But I have found so many people who can understand me because they suffer the same thing themselves.
28. The nicest thing someone did for me when I wasn’t feeling well was: hold my hand and tell me it was going to be okay. I can think of nothing any nicer.
29. I’m involved with Invisible Illness Week because: I just have to be. We must raise awareness.
30. The fact that you read this list makes me feel: very good in that I have accomplished something that matters.
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