Diagnosed with GBS again, and what this means for me now.
I reread my most recent blog post before writing this new one, and I couldn’t help but shake my head at myself. I used the words “busy”, “overwhelmed”, “meltdown”, and “nerve pain + fatigue”, because that’s the place I was in at that point. It’s no surprise that weeks later, my body attacked itself again, and I was diagnosed with a minor re-occurrence of GBS. Looking back, I can see the slow decline of my health, and where I hit my breaking point. I can see I should have slowed down. But that’s hindsight for ya.
It started out the same as my flare up last year – an increase in my fatigue and nerve pain. My life was crazy busy; my responsibilities were increasing at work, our three kids had more homework and extracurricular activities than ever before, and I’d been working on my book re-write every spare moment I had. I was very happy in my life, but I was stressed, overwhelmed, and burning myself out. In mid-October, with my fatigue and nerve pain worsening as the days past, I finally accepted my body was crashing. I took a few days off work to rest completely. But it was too late. As soon as I went back to work, and back to the stresses of everyday life, my body shut down again. The nerve pain spread into my arms (which I’ve never had before), and I could no longer work up the energy to get out of bed. I was so exhausted and weak, that doing simple tasks gave me anxiety and panic attacks. I knew something was wrong, and called my neurologist.
A neurological exam the next day showed slight weakness in my limbs. The EMG showed mild, but new, damage to my nerves. My neurologist felt I was having a mild relapse of Guillain-Barre and suggested I take some time off work. Hearing her say that was a little terrifying of course, but I also knew how seriously ill I was the last time I presented with GBS. This was not like that. I was confident I’d be ok. While a mild case of GBS is not something to seriously worry about, my neurologist still booked me in to have 5 IVIG infusions (an infusion done with donor plasma to help stabilize the harmful antibodies in my blood) the following week.
In the meantime, I headed to San Diego for the GBS/CIDP Symposium. I had so many questions about what I was going through, and I knew that being around the most knowledgeable GBS doctors in the world was the best place for me. I kept myself bedridden for the days leading up to the trip, then did very little while I was there. I skipped out on the conference sessions that didn’t apply to me and sat by the pool. We did a bit of sightseeing in San Diego, and then I slept a lot. While I felt pretty drained, I thankfully did not get any worse while I was there.
The symposium itself was incredible. I learned more about GBS in 2 days than I have in 8 years. I’ll post another blog to share some of the interesting things I learned. I got to meet so many people I’ve connected with online over the years, and I made many new friends. Talking with others who have been where I’ve been, hearing the things that others have overcome, and seeing those that are still struggling – fighting and persevering on, was incredibly motivating. Witnessing the volunteers for the US foundation in action was inspiring, and made me realize just how much I love volunteering with the foundation here in Canada. Overall the trip was amazing, and probably one of the most relaxing trips I’ve ever had.
When I got back to Edmonton though, I was back to my reality. Guillain-Barre Syndrome. IVIG. Again. The last time I had IVIG was on Day 2 of my first bout with GBS – my legs were already paralyzed by then. I was on heavy narcotics and don’t remember that much, so I didn’t know what to expect this time around. Thankfully, it was simple. I sat in a recliner at the U of A hospital, and felt nothing as the plasma surged through an IV in my arm over the course of about 3 hours. The second and third infusions were as easy as the first, and other than being very tired, I felt pretty good afterwards. Around midnight on the 3rd day though, I developed the nasty IVIG headache that so many people warned me about. That damned headache lasted through my final infusions and carried on for almost a week. It was so severe it brought me to the ER for pain relief twice.
Over the next two weeks (other than for Casey’s soccer, and medical appointments) I spent most of my days in bed. I was tired and weak. I could hardly lift bags of groceries. Showering and putting on makeup took too much effort – so I did neither. I was too tired to cook myself lunch, so I ate Halloween candy in bed. Home alone all day, I was bored and lonely. Thankfully Jordan took care of our house and kids in the evenings so I didn’t have to do a single thing, but it was really tough not being able to get out of bed and enjoy my family. I was not in a good place; physically or mentally. A lot of tears were shed. Too many times I had to remind myself that things were going get better. I just had to get through each day as best I could. And I did.
It’s now been a little over a month, and I’m finally starting to feel more like myself again. My nerve pain is almost completely gone, and while I’m still pretty tired by the end of the day, the fatigue is much more manageable now. I’ve been going to yoga and been doing range of motion exercises and I returned to work this week. I lost a lot of strength and gained almost 10 pounds (damn you Halloween candy!), but I’m grateful that things didn’t get any worse. I’m still dealing with muscle fatigue (when I walk or carry things my muscles start to give out if I do it for too long), and I’ve had to make a lot of adjustments to my daily activities to preserve my energy each day. But I’m slowly getting back into a routine, back into a better mindset, and back in the gym to strengthen my muscles again. It’s tough seeing 7 years of hard work on my body and mind seemingly disappear in a few short weeks, but I know I’ll get it back eventually. Slow and steady. They don’t say GBS stands for Getting Better Slowly for no reason.
As frustrating as it is to deal with all of this, I’m a firm believer that drastic things happen in our lives, to shake us up and put us on the path we were meant to be on. And that’s how I see this most recent set back. I 100% believe this re-occurrence of GBS was stress induced, and this is the universe’s way of telling me to slow the eff down. To readjust my lifestyle.
So I took a look at all the different pieces in my life – our children and their activities, my volunteer work with the GBS Foundation, my social media platform, this website and my blog, my corporate job in HR, my relationship with my fiancé, my love for fitness, my friends, my family, my book re-write…and in the end, it was obvious what I needed to do. While I love my job in HR, it is not the most important thing to me, yet I spend 8 hours a day at it. And in order to have the energy I need, to do all the important things in my life, I have to cut back. So I’ve put in the request at my company to just work part-time. Financially, it will be a huge adjustment. But in the end, it’s just money. To feel better, to be less stressed, to have the energy and time to play more with my daughter, to get to take her to school, to volunteer more with the GBS Foundation, to have my health and my happiness – those things are so much more important to me than money. I have to say I’m pretty excited :).
Life is short. If there is ever a time to do what is most important to you, that moment is now. I encourage you to make a list of all the things that make you really happy and set your soul on fire. Then make a list of all the things that you do in a day. Compare those lists. Then adjust accordingly.