It's been two weeks since I came out of treatment after having five days of Lemtrada. So, how do I feel? What have I been up to? I'll tell you.
I would say that the for the first week after the treatment, I was a bit touch and go and playing things by ear. Most nights I would wake up with a headache and felt like I had been to a party that I, unfortunately, had no recollection of. I would wake up with what most would describe as a hangover, but without the good time, in-jokes or banterous tales to tell.
What the infusion nurses had warned me of (but consultant had thought unnecessary to mention...??!) was that I may experience an exacerbation of previous relapse symptoms I may have suffered previously. For me, this meant deep pains in my back and neck, but do you know what, I'll take that over a completely new relapse or further damage. Practicing mindful meditations for pain leading up to treatment meant that I could put what I had learnt to the test, finding a self-compassionate voice to try to reason with me and to not fight the pain, but to accept it as a current state and work through it. This was not easy, by any means and I won't pretend I didn't grumble, but I used this an opportunity to chill out and connect with myself.
"This was a hard time, you've just had part of my immune system knocked out. This is painful, but this is normal and it's ok to feel low through this. You can do this and you are tired but you are not alone. It is ok to feel sad and to get a bit short. You need some good food, some sleep and to just feel some softness towards yourself".
It is so unbelievably difficult to believe this dialogue when you're so active all the time and you feel like you should be speeding along full throttle, but I cannot emphasise how important it is to reiterate a self-compassionate message when you're experiencing any kind of low, medical or otherwise. I'm not going to tell you I listened all to this voice all the time or that my more negative, internal voices didn't have some sharp, witty responses to this, but I kept trying to listen.
After this intial week of pain, and through loads of walks to keep me active and for some light relief, things have eased up. I've been on some public transport (sorry immune system) and met up with some friends. I've been back for a yoga class and a gym session and I'm feeling pretty good. With other side things to deal with, I've probably spent too much time around hospital environments recently which isn't particularly great for anyone's health, but I'm hoping and praying that I can keep things at bay and keep fighting in spirit and body.
It's been a bit emotional, I mean, this could change my life. I really hope it does, for the better mind, and I'll keep making things awkward for this disease and give it a run for it's money. I'll beat this thing one way or another and until such time, I will continue to take each day as it comes, roll with the punches and show MS what I'm made of. I'll exercise hard, play harder, demolish every super food I can get my hands on and keep my head up. Yes, this is eating away my summer, but I pray that the ones to come will make these experiences seem so insignificant that eventually they will fade into nothing.
Thanks for reading, share away and if you haven't heard already, I've started up my own mindfulness page on Instagram to just get some good vibes flowing and to put some positive energy out there. Do check it out @trail.of.light .
I would say that the for the first week after the treatment, I was a bit touch and go and playing things by ear. Most nights I would wake up with a headache and felt like I had been to a party that I, unfortunately, had no recollection of. I would wake up with what most would describe as a hangover, but without the good time, in-jokes or banterous tales to tell.
What the infusion nurses had warned me of (but consultant had thought unnecessary to mention...??!) was that I may experience an exacerbation of previous relapse symptoms I may have suffered previously. For me, this meant deep pains in my back and neck, but do you know what, I'll take that over a completely new relapse or further damage. Practicing mindful meditations for pain leading up to treatment meant that I could put what I had learnt to the test, finding a self-compassionate voice to try to reason with me and to not fight the pain, but to accept it as a current state and work through it. This was not easy, by any means and I won't pretend I didn't grumble, but I used this an opportunity to chill out and connect with myself.
"This was a hard time, you've just had part of my immune system knocked out. This is painful, but this is normal and it's ok to feel low through this. You can do this and you are tired but you are not alone. It is ok to feel sad and to get a bit short. You need some good food, some sleep and to just feel some softness towards yourself".
It is so unbelievably difficult to believe this dialogue when you're so active all the time and you feel like you should be speeding along full throttle, but I cannot emphasise how important it is to reiterate a self-compassionate message when you're experiencing any kind of low, medical or otherwise. I'm not going to tell you I listened all to this voice all the time or that my more negative, internal voices didn't have some sharp, witty responses to this, but I kept trying to listen.
After this intial week of pain, and through loads of walks to keep me active and for some light relief, things have eased up. I've been on some public transport (sorry immune system) and met up with some friends. I've been back for a yoga class and a gym session and I'm feeling pretty good. With other side things to deal with, I've probably spent too much time around hospital environments recently which isn't particularly great for anyone's health, but I'm hoping and praying that I can keep things at bay and keep fighting in spirit and body.
It's been a bit emotional, I mean, this could change my life. I really hope it does, for the better mind, and I'll keep making things awkward for this disease and give it a run for it's money. I'll beat this thing one way or another and until such time, I will continue to take each day as it comes, roll with the punches and show MS what I'm made of. I'll exercise hard, play harder, demolish every super food I can get my hands on and keep my head up. Yes, this is eating away my summer, but I pray that the ones to come will make these experiences seem so insignificant that eventually they will fade into nothing.
Thanks for reading, share away and if you haven't heard already, I've started up my own mindfulness page on Instagram to just get some good vibes flowing and to put some positive energy out there. Do check it out @trail.of.light .
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