Turning MS Treatment Into A Positive: Tysabri Infusion Day Part 1

Multiple Sclerosis Blog InfusionMy current MS treatment is Tysabri – a somewhat new medication that I receive through a monthly infusion. Infusion just means that I get the medication through an IV at the hospital.  Anyway, I started receiving Tysabri in 2008 and each infusion is supposed to take two hours.  Unfortunately, the current medical system doesn’t always work efficiently and I quickly learned that my infusions often take an entire day.  The other thing I quickly learned about Tysabri is that my body loves it!  Of course that’s great news.  The challenge to this is that my body craves Tysabri.  So each month, just a few days before I’m due for my next infusion, my body seemingly has less medication in it compared to the first couple weeks after my infusion and as a result my body begins to crash.

The week before my infusion is really tough, at times even miserable.  I’m often exhausted, with my fatigue being much worse than the rest of the month.  My other symptoms also tend to act up resulting in pain in my limbs and eyes.  To top things off, my body is seemingly incapable of sleep during that week.  As a result, I can’t even get the rest I need, which is even more important with my symptoms acting up.  So over the last four years I have come to look forward to infusion day.  Prior to Tysabri I had to take daily or weekly injections for my Disease Modifying Therapy (DMT), and I used to dread every injection.  I would procrastinate my injection in every way possible and, especially when I was on weekly injections, I had to block off an entire day to just lie in bed with flu symptoms.  Now I actually look forward to Infusion Day!

Multiple Sclerosis Blog BrotherBut, I am faced with a predicament each month when Infusion Day rolls around.  On the one hand, I can hardly wait for it because my body is miserable!  On the other hand, I lose an entire day just by being at the hospital and I’m usually pretty low energy until the next day.  I’ve had to make Infusion Day an exciting tradition that I partake in each month in order to ease the process.  When I reach the week before my infusion I usually start a countdown.  And for the majority of the last four years I’ve always had a friend or family member come with me.  I find this helps a lot when I’m half asleep during my infusion and want an extra blanket or something.  Also, depending on who I bring, it’s also a great way to help the time pass.  When my friend Kristen came with me once she actually gave me a manicure while I slept!  Up until recently, I would also indulge in junk food on infusion day by bringing chocolate and other goodies.  (I say up until recently because I am cutting out the junk food in my life these days.)

Multiple Sclerosis Blog GraduationI made Infusion Day into a ritual that I continue to maintain each month.  I find it helps me a lot to feel good about treating my MS.  Since I started taking Tysabri, I have found that having to face my DMT only once a month instead of daily or weekly, along with the ritual aspect I created has really helped.  Today there are several DMTs available for MS, including oral medications which means that not everyone will feel the need to create a ritual or special experience to help ease the process of treating MS.  For me, this has worked really well and I literally get excited for every Infusion Day.  It is such a relief to finally look forward to treatment and feel like it’s helping me.  My most recent infusion was last Friday and ever since I can sleep again and I can function for more than two hours at a time – what a relief!  I spent so many years being poked and prodded and dreading it each time.  To feel positive about taking care of my illness has made such a difference in my life and I’m blessed to have family and friends around me who get excited for Infusion Day with me! 

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