Regaining Control of Your MS Treatment
Being diagnosed with multiple sclerosis is a lesson in loss of control. You are not in control of preventing it from being a part of your life. You cannot control when or how the next relapse will occur. You cannot control the fact that you are now at the medication station and you are never allowed to leave.
Sounds pretty bleak right? Maybe that is why so many people choose not to take their medicine from time to time, or in some cases, choose not to take their medicine at all. Like a child who won’t eat their vegetables, skipping meds can feel like our only outlet of control. And also like skipping your veggies, skipping your meds is not healthy.
However, I am not saying that you should forgo all control over the medicines you put into your body. On the contrary, I believe that you should harness all the control possible when it comes to dealing with your meds. It is something that needs to be looked at seriously and often.
Once you are diagnosed, it is necessary to have a detailed conversation with your neurologist about the drugs that will be prescribed to you. It is necessary to have a conversation at every visit to recap and tweak any prescriptions or change medicines completely. Your doctor is a great resource and is there to answer any questions that you have.
I have a method to deal with my medicines. I have three categories for them:
- Relapse treatment
- Disease modification
- Symptom relief
Having a compartmentalized system for dealing with my meds showed me how I could regain control over my treatment and my life by making careful, well thought out decisions. I have been freed from the burden of the piles of pills that used to throttle me until I would finally just drop them without physician supervision. I no longer deal with my meds with reckless abandon.
Let’s look at the relapse treatment category. Firstly, I am one of those people who is quick to seek out treatment for my relapses. I believe that the faster my doctor sees me and gives me medicine to put in my system the better! I am sure you are all familiar with the protocol. First-time events are usually a five day IV steroid infusion and a full brain and spine MRI (with and without contrast).
Subsequent relapses can involve a myriad of routines depending on your doctor and how you are progressing. For me, they give me three days of IV steroids and a full brain and spine MRI (with and without contrast). I hate the steroids, but I am at every treatment and on time. My way of seeking control in this situation is by not allowing the nurses to leave in an IV port for the duration of the treatment.
They always say that it will make it easier for me in the following days, but I always say no. Truth is, if I had a port left in my arm then I would be thinking about my steroid treatment for the entirety of the three days. I would also have a freaking needle in my arm for three days that I would have to make considerations for when washing, changing clothes and basically any time I needed to move my arm or hold something.
I believe that the port in my arm would make their jobs easier, but I would much rather get poked with a needle three times than have one installed in me, thank you very much! I speak to the nurses much more politely though. I take a breath and say, ‘No, thank you,’ and then I stare at them smiling so that they know not to press the issue further. The key is to get the treatment that is necessary for your body to thrive and sort out the stuff that is unnecessary.