Coping with a Chronic Illness

I’ve been having some difficulty this week. My back has been really battling me and I have been twitching more. I have been working diligently to figure out what I can do to eliminate this pain, but it’s hard sometimes. I have been trying so hard to be positive about everything but it is quite difficult sometimes. I’m sure those of you who have been diagnosed with a chronic illness have a difficult time coping, too. I found some tips for coping and I have listed them below.

“Here are some other suggestions for coping with chronic illness:

• Stay connected. Establish and maintain quality relationships with friends and family. Many health organizations also sponsor support groups composed of other people experiencing similar challenges. These groups will not only aid your own well-being, but also provide rewarding opportunities to help others.
• Take care of yourself. Don't allow worries about your illness to get in the way of eating property, getting rest and exercise, and having fun.
• Maintain a daily routine of work, errands, household chores, and hobbies as much as possible. This will provide you with a feeling of stability amid the chaos and uncertainty of your illness.

The American Psychological Association Practice Directorate gratefully acknowledges the assistance of Rosalind Dorlen, PsyD, ABPP, and the Council on Psychological Health of the New Jersey Psychological Health Association in developing this fact sheet.”

The above was found at http://www.apa.org/helpcenter/chronic.aspx.

I am going to keep my chin up, my head held high and live with the knowledge that I will someday understand the reason for this disorder.

“Keep your face to the sunshine and you cannot see a shadow.” -Hellen Keller

Never Say Never (No it's not about Justin Beiber)

Well it has been an interesting few weeks. I apologize for my lack of blogging; however, I had a good string of days and I wanted to utilize them to the fullest. I couldn’t believe that I had more than one good day in a row, considering I had just written how that never happens. I guess that stands to reason, never say never.

Last week I had an incredible week. Everything seemed to be going strong and healthy for me. I did continue to twitch but it is not something that will bother me as much as the pain. Two days ago the pain came back and it was a little frustrating. Once I started having good days, I expected them. It was a blow to my senses when I woke up with my back pain again. I have been able to avoid taking my pain medications for several weeks. I am trying to learn to deal with the pain naturally at this point. I am laying flat more often, resting more and actually asking for help! Those of you who know me realize that is a HUGE feat for me because I am so independent. My mother came over yesterday to help me with my daughter’s hair. As you know it’s difficult for me to wash and style my own hair, but my daughter has this super curly hair that is difficult to comb. When I wash and style her hair, it takes me hours because her hair tangles so quickly and easily. God bless my mother for her patience and strength through this endeavor. She has been my rock and I love her so much.

At this time my symptoms are as follows: headache is still persistent but the migraines have subsided for the time being (knock on wood), I have mid-back pain (by the shoulder blades) that resonates up to my neck and down my spine, I have twitches that happen quite frequently (although they are becoming less “visible”), and I am run down and tired. I do celebrate the victories of not having migraines…that is incredible! I am still able to function as a normal person and I don’t let this get me down. I can work, interact with people, and have a “normal” life at this point. I am trying to live my life to the fullest and show people that even though I am afflicted with a rare neurological disorder, I can still be me.

Take the Good With the Bad

I have had my fair share of ups and downs in the last several days. I have also found a direct correlation to the pain and I wish it was a great one. Basically what I have found is that if I have a good day, it is always followed by at least one really bad one. I found this out this weekend by having a really good day on Sunday. Monday and Tuesday were really terrible for me physically. I had severe back pain on both days and then I had a migraine on Tuesday.

I wish I was able to just have more than one good day in a row, or really have a good day followed by a moderate day. It’s scary to think that every time I have a good day, a bad one will follow. I’ve become fearful of the good days and that’s not at all what I wanted to have in my life. I could dwell on the negative that this brings or I could look at the fact that I really must take advantage of the good days by doing the things that I won’t be able to do on the bad days.

It’s hard not to be positive when the negative is staring me in the face, so I thought I’d share a bit about what is staring me in the face daily besides my green eyes. There are a ton of things that I am no longer allowed to do and things I shouldn’t do. Below is a very small list of them and I thought that it would be an interesting thing for you all to see.

Avoid activities that may make symptoms worse If you've been diagnosed with syringomyelia, avoid any activity that involves heavy lifting, straining or putting excessive force on your spine. Examples of activities to avoid include:

·         Playing high-impact sports, such as football and Rugby

·         Riding roller coasters

·         Sky diving

·         Straining during a bowel movement

·         Excessive coughing (talk to your doctor about treatment if coughing persists)

I found the above and a lot more information at http://www.bing.com/health/article/mayo-126787/Syringomyelia?q=syringomyelia.

Although you will not find me on a roller coaster or jumping out of a plane, you will find me spending every day grateful to have the opportunity to live my life. It may be a life that is not quite as eventful as it would have been had I not been diagnosed with Syringomyelia, but it will be full none-the-less.