One year

A year ago this week, I was experiencing difficulty walking, pain in my hips and legs, double vision and weakness. I was eventually diagnosed with GBS, Miller Fisher variant, treated with IVIG, physical and occupational therapy, and sent home to slowly recover.

It has been a long year. Quieter, calmer, and more reflective than years past.

Today:

• I can walk well
• Lower legs feel heavy, but are usable
• Still no deep tendon reflexes
• Feet still tingly and numb
• Fingertips tingly (tip of tongue, too)
• Endurance much better
• Balance better, still a little more wobbly than my 41 years
• Working some-less than before, but getting back
• Exercising is great (30+ min. w/heart rate up!) at YMCA doing elliptical, bike or treadmill, some swimming, even walking with a bit of jogging outside!
• Soft things are my favorite: blanket, scarf, socks and the stuffed animals the kids share with me

I still take time to rest every day to save energy for the necessary stuff or things I really want to do. Wade does more dishes and can fix dinner at the last minute on days I run out of steam (fewer and fewer, though!). The kids have learned the real meaning of nerves on edge, and other nerve related sayings. I have my moments of overload, but everyone is forgiving and patient.

I love my family and can't say enough about how their love and support is the greatest thing. Mom and Dad, siblings, dear friends, extended family and especially Wade, Jim, Trevor, Mae, and Owen--thanks!

Neurontin

Early on in the course my GBS, the doctors tried neurontin for the pain in my hips and legs. Fortunately it turned out to be very effective with no noticeable side effects, and I'm still taking it three times a day.

A couple of weeks ago I started to feel drowsy occasionally about 30-60 minutes after the doses I took during the daytime, so I wondered if it would help to decrease the dosage a little bit (per my neurologist). I also misplaced one of the bottles of my prescription and figured it would be a good time to see if I still needed the dose I was taking. Long story, short; after a week of trying to lower the dose from 900mg to 600mg every 8 hours, I felt more irritable, tingly and just like not moving, a lot more of the time.

So now I am back to taking 900mg at least for 2 doses a day. If I feel ok at the end of the day, I just take 600mg before going to sleep, then take the normal dose when I wake up. We'll see how it goes, but for now I'll be grateful for how much this medication helps my nerve symptoms, and keep taking it for as long as needed. My neurologist said it could be for at least a couple of years. Speaking of time...(see next post!).

image from patientpowernow.org

Tips and Tricks

A few things I have learned since becoming weak:

• when a door opens inward, just lean into it (throw your weight into it!) to open it
• use a backpack (with both straps)-- hands tire quickly when holding onto a purse or bag
• relax shoulders whenever you think of it... when driving, walking, sitting, eating-- this will release tension
• use cruise! control, that is. Both our cars engage at 25 mph, so it can be used even in neighborhoods. This saves your foot/ankle/leg from applying constant pressure.

Some of these things seem silly, but all conserve energy to be used for specific strengthening exercises or cooking dinner or whatever you really need to get accomplished today, or any day. Think about that! It's worth it to me.

Image found at wordpressblog.com