Thursday, September 8, 2011


Up until now I have stuck to some insight on what it is like to have an invisible illness. I want to switch gears for a bit and focus on some positive things that have come out of my diagnosis as well as share some of the things I have done to improve my quality of life.

And what a coincidence it was when I saw that a friend posted on her Facebook page today a quote from Joan Baez: “You don't get to choose how you're going to die, or when. You can only decide how you're going to live now.”

So, for now I cannot do a lot of the things I used to. And I miss those things. But once I got in the mind set that there were still a lot of things I could do, however small, I became more at peace.

The Me I Have Not Lost

I have been creative all of my life. When I went to college to get a degree in art, I chose to major in graphic design so I could learn to use the computer as a tool for what I wanted to do creatively. I was a traditional graphic artist for 12 years. But all along I wanted to do other kinds of creative artwork. I jumped at any chance I had to do the other kinds of work I loved on the side such as gift design, creating invitations, etc. Able to spend hours at the Mac over the years, it was typical of me to get into a project without stopping and love every moment of it, sometimes staying up all night. But when it got to the point where I was not able to sit or stand for long periods of time due to painful neuropathy sensations, I became frustrated and would almost be in tears when I would try and work. Then, when that got a little better due to treatment my eyes gave out on me. They could no longer take long hours staring at the screen anymore due to chronic dryness and spasms. And that led me back to something…my art table. For even using digital pens takes a toll as starring at an electronic screen for too long is really not good for anyone. I never fancied myself an illustrator. I always just sort of “got by” in that department. Forcing myself to be more creative at my art table so I could incorporate drawings and paintings on the computer for manipulation, rather than do it all on the computer, gave me confidence in the fact that I could sketch and paint with the best of them. The trick? It did not have to be perfect or live up to anyone else’s standards but mine. I also gave myself permission to take as long as I needed to work on my projects. The days of crazy deadlines and rush jobs just do not fit in with my illness and I have always, from the very beginning, wanted to create work on my own time and terms to use for my business and this illness has actually allowed me to do that. My art is again the creative outlet I need to feed my soul. A friend of mine with a chronic illness reported to me recently that she started writing again. Just writing to write, not worrying about how good it was. And it made her happy. When I started working at my art table again, I felt the same way. Now I can work on projects that require less computer time, while still being creative. This to me is something good that came out of my condition and frankly, I like it.

I Found Things That Made Me Smile

With my eyes unable to read books as much anymore, I have discovered the world of audio books and I love it. The library and downloads put them right into my ipod, and when I need to wear my moisture goggles and relax, I look forward to listening to the books I have. It is also a great escape for when I am uncomfortable, fatigued, in pain or cannot sleep. Music is another great healing thing for me. Sometimes when my pain is bad, or I am fatigued or just want to forget everything I listen to all kinds of my favorite music. I happen to love dance music a lot, which has always put me in a good mood. Little things like this have been a lifeline. I suggest to anyone to find things like this that make you happy if you can. It could simply be going on utube and watching videos that make you laugh or when you feel up to it take photos if you enjoy doing a little photography. Low-pressure activities where nothing is expected of you. Things that are just for you and you alone. And you never know…they just might lead to something else.

I Try To Be Extra Good To Myself

Some of the other things I have done are to take charge of my health as much as I can from a natural healing standpoint. This means no longer denying myself massages for pain, good high quality supplements and really good food. I feel so much better when I do this I cannot see myself ever going back to the old “Oh this is too expensive” excuse on some things. For me buying really good quality organic foods that are easy to prepare for my specialized diet to reduce inflammation is worth every penny. Going back to eating the way I used to is simply not an option as long as I can help it. I will get more into adventures with nutrition in another post, but for now I will just say this plays a highly important roll with my illness.


You might have heard people suggest or have read that volunteering is a great way to “get you out of your head” when you have a heavy burden to carry yourself. Unfortunately, having an invisible illness makes me hesitate to do such things because I know I may not be able to be depended on to show up at certain times and have the energy and stamina for it. But this past spring, my mother had me design the poster, tickets and gift items for her church’s Women Together group with plenty of time to do it in. She is an artist herself and I knew she would be standing by to pick up the slack just in case. Not only did this introduce me back to my art table and give me great pleasure, but I also got a really satisfying art piece out of it and helped raise money for her church. I even have orders from two people to purchase the design on note cards this holiday season. Volunteering can boost confidence while helping others, perhaps doing things from home like making phone calls or other activities that are not on the spot.

I Try To Be Proactive (when I am not burned out, that is!)

I take whatever steps I can that the doctors I see are on my side, believe my symptoms are real and also believe in me. I also will not put up very much with a health care professional who does not believe natural healing is a big part of feeling better or who is not aware of the latest research and drug side effects. I have received some of my best care from a great chiropractor who never stops doing research and caring about her patients with great passion and respect. Due to the pure supplements I am on, I am able to now take a little less medicine than I was six months ago. I have another doctor who introduced me to the right kind of nutrition plan, which has also been a blessing. I owe it to myself to find the very best care I can with also the best bedside manner. That is just who I am.

I Avoid Drama

Family drama, friend drama, work drama or even upsetting, loud movies can trigger stress so high in people with illness sometimes that they are not even aware that they are taking a negative toll until it is too late and they stuck in an aftermath of symptoms. It is vital to filter out as much of this as possible. Last year I had to quietly let go of a branch of family that for years only brought me stress. Naturally I had been scared to do it until they finally pushed the envelope. I am glad they did. It gave me the outlet to finally say, “All done!” and I cannot tell you how liberating this has been and so much better for my health. But this also means the normal life drama that I sometimes cannot avoid by removing myself from it and not being part of it whenever possible, too.

I Take Breaks

I do not mean the many breaks I already have to take throughout my day to get through them. I mean taking breaks from thinking about my illness in the way of research, appointments, worry, etc. It is very easy to let my mind get constantly caught up because my symptoms are so “in my face” so to speak 24-7. The background noise never turns off, ever. Yoga, Tai Chi and meditation can help with this of course but sometimes just watching the right movie or calling someone to chat can achieve this. And of course, practicing living in the present moment, although hard, has really helped me from time to time.

And Finally…Let It All Go

Nothing is worse than overwhelming myself with things like the house has to be all tidy and clean, the laundry HAS to be done today, the paperwork is piling up so I have to do it now, etc. etc. This is another big stress trigger for me. It also robs me of the time I need in my studio which is precious as it is which is imperative to my well-being and a great part of my health puzzle. After all with my limited energy, fatigue and other symptoms it is hard enough just doing the specialized food shopping and cooking let alone worry about everything all the time that comes with maintaining a home. Of course, I fantasize about maid service and a cook but who with an invisible illness does not?  Again I was discussing this fact with a friend with chronic illness the other day and we both felt that since we have started to try and let these things from “the old us” go, we feel a bit better. Because after all, I am not the old me anymore. The old me stayed up all night working, overwhelmed herself sometimes with too many tasks…what for? This illness has at least brought some freedom from such things and hey-that is positive, right? 

So I feel that some positive things have come from my illness in a way. Not to mention it has made me more tolerant, more compassionate and more aware of better ways to care for myself and others. And the rest of it? 

“Leave life alone. Let it be.” Eckhart Tolle


  1. Loved reading this. You are providing such a valuable window into how to live life better with illness and even, frankly, without it. Betsy

  2. It is nice when you're forced to slow down and smell the flowers a bit. It's easy to get caught up in doing too much and not really getting to stop and enjoy life, even if it isn't for the reasons we wanted.