Gratitude

We celebrate Thanksgiving in the United States on Thursday, and you may have seen the 30 days of gratitude meme on social media this month. I decided to share my gratitude in one post, and focus on aspects of my life with CFS. So here goes: 30 things I am grateful for in my CFS life.

1. To say I am grateful for my husband is so inadequate. We met only two months before I got sick, and he has stayed with me through it all. I don’t think I would have made it this far without his support. I am blessed.

 

2. I am grateful that I was diagnosed after only 6 months of illness. Most people with CFS are not diagnosed at all, and even those who are diagnosed often spend years going from doctor to doctor before finding one knowledgeable enough. Early diagnosis made such a difference in my life because it confirmed for me that I was not crazy and made it possible to pursue disability benefits.

 

3. I am so grateful that I made the investment this year to have exercise testing. It was terribly hard, but I learned some very valuable information, and it is changing how I cope with the illness.

 

4. I work with only a few healthcare providers, but they all believe in CFS. When I have needed to consult a new doctor, I’ve always dreaded the CFS part of the conversation because I don’t want to deal with the dismissal and disbelief that are so common. So far, I have been very fortunate.

 

5. Some days it is hard to remember, but I am very grateful that I am not more disabled and ill than I am. There are patients who cannot get out of bed at all, or who deal with more severe symptoms than me in many ways. I am grateful for the capacity I have, even though that changes day to day.

 

6. Despite the slow pace of getting treatments and diagnostic markers for CFS, there are many researchers working on this disease. I am grateful to every single one of them, and have had the privilege of thanking some of them in person.

 

7. I am extremely fortunate to have disability benefits, and I am grateful to the attorneys who have helped me with that. Without those benefits, I would have spent the early years of my illness living with my parents. Things have not always been easy financially, but without my benefits it would have been much harder. I wish I didn’t need them, as I would much rather work, but I am grateful that safety net is there.

 

8. I am grateful to the doctors around the country who specialize in treating CFS patients. I have met only a few of them, but they are some of the most compassionate people I know. In more than one meeting, I have seen clinicians check on the patients in the room (including me) and try to help them. Most of us cannot see these specialists on a regular basis, but they help us all through their participation in research and in building a clinical knowledge base.

 

9. I am grateful for the understanding and support of my family. So many patients must contend with disbelief from spouses, parents, children and other relatives. My family gets it. Actually, it’s pretty funny to be at a family gathering and listen to the chorus of voices telling me to sit down when my heart rate monitor starts beeping.

 

10. I am deeply grateful to all the patients who advocate on CFS issues. I know how hard it is to do this while being sick. I have seen the toll it takes on people, and appreciate the sacrifices they make to help advance the cause. I cannot list everyone here (although that is a list that should be compiled), so I’ll give a global shout out to all of you.

 

11. I am grateful for my house. Many patients have to rely on family or are homeless because they cannot work and support themselves. Having a house gives me the luxury of space, a yard, and solitude – all of which help me cope with this illness that keeps me housebound.

 

12. As much as I hate it sometimes, I am grateful for my heart rate monitor. It gives me immediate feedback and warns me when I am pushing too hard. I hate the message, not the messenger.

 

13. I am grateful for my friends. I met some through my husband, some through the patient community. Some of them I know only from phone calls, email or Twitter. There is no substitute for the support of good friends, and the way they make me laugh is good medicine.

 

14. I am grateful for the internet. It is hard to imagine how isolated I would be without email, Twitter, or Facebook.

 

15. My brain does not work as well or as long as it used to, but I am grateful that I’ve retained enough cognitive function to write this blog, to read scientific papers, and to participate in advocacy. I wish I could do this 10 hours a day or more like I used to, but something is better than nothing.

 

16. I am grateful for my dog, Grif. He is my constant companion, and makes me laugh every day. He forgives me for not being able to take him for walks, and will play fetch even when I have to throw the toy from bed.

 

17. I am grateful for Laura Hillenbrand. She has proven it is possible to write great books despite being severely ill with CFS. She is one of my role models (and is also funny as hell).

 

18. I am grateful for my wheelchair. Without it, I could not travel or go to the movies (or a concert). I don’t do those things often, but I would not have the option at all without that wheelchair.

 

19. There are healthy people who have stepped up to the plate and are advocating on behalf of CFS patients. I am deeply grateful every day for their commitment, engagement and service. I have had the privilege of working with some of them, so a special shout out to Mary Dimmock, Denise Lopez-Majano, Kim McCleary and Suzanne Vernon.

 

20. Sometimes, I’m grateful to drink a cup of hot tea and watch the birds outside. I am not the kind of person who slips into quiet moments with mindfulness and ease, but I am grateful when I can.

 

21. To all the healthy caregivers, including my own, thank you. I know parents and spouses of CFS patients who could knock your socks off with the depth of their love and determination.

 

22. I am grateful for the new friend I made this year. She routinely emails and says “I’m going to the store. Send me your list.” She is a constant source of support and humor, and has a mean brownie recipe.

 

23. I know I am critical of the CFS Advisory Committee, but I am grateful the Committee exists and especially grateful to everyone who serves on that Committee. The public policy arena of CFS would be a barren and desolate place without that Committee as a vehicle for information and recommendations.

 

24. I have a few friends from “before” who have stuck with me. They are fierce. It takes a special person to stick with a friend even when her whole life and outlook changes. I am eternally grateful to these women.

 

25. I am grateful for the open access science movement. I need to be able to read research papers myself, and it is so frustrating when a paper I need is behind a paywall. I appreciate everyone who tries to make science more available to people like me who do not have access to a science library.

 

26. I am grateful for my house cleaners, and grateful that I can afford house cleaners. Clutter and mess and dirt drive me completely nuts, and I’m lucky to be able to foist part of that work onto other people.

 

27. I am thankful for my health insurance. Without it, I don’t know how we would manage to pay for the healthcare I need.

 

28. I am grateful for the pain medications that keep my pain under control most of the time. We have spent years trying to find the right combination of medications that I can tolerate and that provide enough relief to keep my pain bearable.

 

29. I am grateful that I learned how to knit and that most days I am able to do it. People joke that they knit so they don’t kill people, but I have found that knitting really does help me manage my pain and frustration, and relieves my boredom.

 

30. I am so grateful for my local library, and especially the online request system. If the book is in our county library system, I can get it without ever having to leave the house.

 

31. BONUS: When I started this blog, I wasn’t sure if anyone would read it. But here you are, and I am grateful to all of you. I appreciate all of your comments and emails. I appreciate that you share my posts on Twitter and Facebook, or link to my posts from your own blogs. I’ll try to keep writing things that are interesting to you or speak to you in some way.