From zombie to fully functioning adult (ish): My Lemtrada journey

When I was having to use the nebuliser to relieve the tightness in my chest I thought I had made the biggest mistake of my life by choosing to swap to Lemtrada, but I was completely wrong.

In the first few weeks, everything was a little bit harder. When I got up off the sofa or bed – where I spent a lot of time and built some sort of fort – walking felt like I was trekking through thick custard. When someone asked me a question, it took longer than usual for my brain to process the words and I felt like my voice was slurred – all the symptoms of being drunk, but none of the fun bits.

I had to take four weeks off work minimum and my MS nurse gave me a lengthy list of restrictions to follow – such as following the pregnancy diet to avoid listeria, avoiding children (as are like taxis for viruses) and forgoing activities that involved being in confined spaces with air conditioning. This meant that I had to stay away from the cinema and the gym, as the ventilation system spreads bugs without you having to come into contact with other people. I’ll leave that there for anyone planning a cinema trip.

Avoiding the gym was hard, because exercise has done so much me for over the last 12 months. I’ve lost around 40 pounds and found a way to relieve some of the pain that the MS helpfully causes. It has lifted my mood and help me re-focus my life, after the horrendous time I had last year. As the nurse was telling me to not step a foot in the gym, I was imagining that I’d only need a few days’ rest and I could go to the gym when it was quiet – I mean, I didn’t really need to follow all the advice right?

Firstly, that was a pretty dumb idea, especially considering I managed to catch an infection before I left the hospital. If I could pick something up there, then I could definitely contract something from the gym. There are a few people that seem to wear the same gear day after day and I rarely see people wiping the equipment down, which actually grosses me out the more I think about it. So, my love of the gym was not greater than my love of being alive.

Plus, I was so tired that blinking felt like hard work. Actually, every thing felt like a struggle. Walking, talking, sleeping and eating – the latter is something I’ve never had a problem with. I felt like I would never feel normal again, that I would spend the rest of my life as a zombie.

However, it’s been seven weeks since I had my first round of Lemtrada and I honestly feel fantastic. I’m back at work, back at the gym and back to feeling like my old self – and by that I mean by pre-MS self. I haven’t had any flare ups, there has been minimal pain and I feel like the cognitive issues I was experiencing (such as jumbled words or being unable to find the words I needed) have cleared.

I’m not sure what the long-term effects of the treatment will be. Maybe this is some sort of honeymoon period that won’t last or maybe this is what life will be like from now on. I don’t worry myself with these thoughts though, I’m taking each day as it comes and I’m grateful for every ‘good’ day I have.

Everyone who knows me knows that I am a pessimist by nature and I don’t always see the good in things. But this is different. I’m looking forward to the future as a Lemmie (yes we have a name, maybe I’ll suggest biker jackets for us) and I’m pretty sure I’m prepared for whatever happens.

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5 comments

  1. nuggetsdrooling · December 30

    Glad to hear your Lemtrada has worked for you. I had my first round in Sept & it has not gone well. Legs are worse than before, new pain has reacted it’s ugly head in arms & hands & I’ve had two “hugs” in last two months #strugglingbuthoping

    Like

    • Leigh Erin · December 30

      Has your neuro said anything about alternative treatment options? Mine told me about a tablet that should be released next year. I could try and find the name for you. What you’re going through sounds horrendous, and I’m sorry that it hasn’t gone to plan. Stay strong 💪🏻

      Liked by 1 person

      • nuggetsdrooling · December 30

        My next neuro appt is in Feb. Nothing alternative yet. Today is the fun blood & urine test day lol.

        Like

      • Leigh Erin · December 30

        I hate those. I can never pee on command. I’ll look through the stuff my neuro gave me and see if I can come up with the name of this tablet. I hope 2017 is your year ☺

        Liked by 1 person

      • nuggetsdrooling · December 30

        Me too I drink to much & have to go before or don’t drink enough lol that would be great thank you. ❤️
        Hope your 2017 is extraordinary!

        Liked by 1 person

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