I’ve been sitting on this blog for a while now, but never came around to publishing it. The reason for this, is that I always felt this journal was a little too raw and I was worried I’d scare people from taking the medication they need. But today something changed. I spoke to a brave 24-year-old girl, recently diagnosed with MS who follows my blog.  This girl reminded me that it’s better to have information out there for people to see even if it’s scary, because it’s still better than knowing nothing at all. Which most times, is what happens with conditions like MS.

I’ll start off by saying that if you have MS and still haven’t started taking treatment then I assume you might be a little scared to start…and I want you to know that I was scared too. In fact, I was so scared and my denial so deep, that I refused to take anything for years, even after my diagnosis. I am only saying this, because I’m trying to be as honest as I can, but I am not proud, nor promoting this decision. In fact, it was a pretty bad decision from my part.

The reasons I refused treatment are more than one. Primarily there was denial, so I didn’t actually believe I needed medication. Secondly, I had read about the side effects and I was scared.  I was petrified to be exact, so I made myself believe that I was better off with relapses than any possible side effects. Then I got married and came the fact that I wanted a baby, so I refused treatment yet again, even after a very bad relapse. Many relapses later… I can tell you that these weren’t my brightest moments. Year after year, I brought up excuses with regards to why I shouldn’t start, however, those excuses wore thin after I had my son.  I couldn’t keep denying the obvious, and the obvious was that I was becoming very unwell and if I wasn’t going to make the sacrifice and brave the side effects for myself, then I was going to do it for him.  So, I did.

The first treatment they prescribed was Avonex.  If you read a little about Avonex, the side effects would scare anyone. It doesn’t help that this is only available in an injectable form, so I needed to inject my thigh muscle once a week, every week. With every injection, would come side effects for the 24 hours that followed. I’m not going into the details of all the side effects but I can tell you in brief what it was like for me. It was quite a tough night every night of the injection. I got shivers within an hour of injecting and this lasted about an hour after that.  Here we are talking about serious shivers. Chattering teeth and it wasn’t winter.  I remember one night it got so bad that I asked my husband to lie with me in bed and hold me till I fell asleep because I was scared that it wouldn’t stop.  He held me, covered me under about three blankets and eventually the shivering did stop, and I did fall asleep. The flu-like symptoms that I got the next day weren’t easy either; headaches, fatigue, fogginess, possibly slight fever. One day the pain in my thigh was so bad from the place of injection I could barely stand let alone walk. I’m not sure if its cos I injected badly or if this happens sometimes. But somehow you walk, you make yourself get by, because it’s just 24 hours and because if you have MS then you’re a fighter and so you fight, day after day, week after week and you even do it with a smile. . .

The light at the end of this tunnel is that these side effects only keep happening till your body gets used to the treatment. Eventually, these horrible weekly symptoms will in fact subside. The information I had found, said that it would last approx. 3-4 months. However, mine lasted longer. My body hadn’t gotten used to them in 5-6 months, but that’s all I can tell you about because that’s as long as I took them. After 6 months of this medication, my relapses just kept getting worse and the lesions in my brain kept increasing, so my doctors decided that this treatment wasn’t working for me and we moved onto something different.

The new medication they prescribed is Tecfidera and this is what I am still currently taking because so far, it has worked. Tecfidera comes in pill form and I need to take it every day twice a day with food (this part is tedious, because the food needs to be a substantial meal and so whether you’re hungry or not, you need to eat this substantial meal!)  Again, the side effects were scary to read about and nasty to start. Upon taking the full dose, I vomited every day, almost twice a day for a good couple of weeks. I ended up in hospital one time because I even vomited blood (it turns out this came from too much retching). This was a very scary day and a very difficult time. Eventually, I found a balance of the right things to eat to reduce the symptoms and my GP also prescribed gastrointestinal medication to help with the side effects. The pain stopped being gut wrenching and finally, weeks later and several kilos less, the vomiting stopped.  So, this too passed and here I am telling you all about it. Truth is, I still get bad days even years later. If I take the medication with a light meal, the pain returns, but by the end of the day it does subside.

So, this is a little bit of my journey, with MS treatment, but I want to remind you that yours might be different! In my case, this was it. Is it easy? No. Did it hurt? A lot. Was I scared? Yes, very, a number of times. And yet, the moral of this story is; it’s DEFINITELY better than the relapses I have had. Because the relapses come along with pain much bigger, pain that lasts longer, pain that you don’t know will ever end. Fear, not of the shivers, or vomiting, but fear that you won’t regain your eyesight, or fear that you will never walk again. So yes, for me, the fever, the vomiting, the pain, it is all worth it if it means even just one relapse less!

Since my first symptoms over a decade ago, research has advanced tremendously.  There is no cure, but we are lucky that there is a lot more treatment made available for us and if it isn’t Avonex, then it will be Tecfidera, and if it isn’t Tecfidera, then it will be something better, so work with your doctors, listen to them, go to your appointments, take the medication prescribed and do your MRIs – because yes there was a point where I didn’t even go to those, but that’s another blog all on its own.  These check-ups, with your neurologist and your GP, the medication, combined with a healthy lifestyle, a healthy mind and a lot of rest are what might make you well again if you aren’t, or keep you well if you are!

I’d really like to invite any other MSers reading this, if you agree or disagree, if your story was similar or totally different… please feel free to leave a comment, tell us your story, share it if you wish, for people that are just diagnosed or people that are in the thick of it and are looking for solace though other’s experience.