So it’s World MS Day today and about 3 years since my diagnosis of MS and thought it is a good time for another blog. Even if it is a bit random and jumping from topic to topic, it’s a few things I want to talk about.
It’s definitely been a tough few years, that’s for sure.
It all started out fine. I wasn’t really phased about having MS. It wasn’t, and still isn’t, the worst thing out there. So I always said that it could be worse.
It wasn’t until new symptoms began, and I was having a lot more pain that I started to actually think more about the disease and what can happen to me in the future. The diagnosis wasn’t a death sentence, but to be told you have an incurable disease sucks. It truly sucks! Especially being so young.
I joined several support groups on Facebook for those with MS in Australia, as well as those taking the same medication as me. It’s definitely been great to read other people’s experiences with MS, and to be able to get advice and talk to people going through it who understand. But, at the same time, it’s scary. Reading people’s stories is eye opening. It puts the whole ‘what is going to happen to me in the future’ thing a bit more in your face.
Yes, no MS case is exactly the same. But it’s still daunting to read about those who have only a small amount of pain and symptoms, to suddenly being in hospital because of a relapse, or going temporarily and even permanently blind in an eye, or needing to rely on a cane or wheelchair.
I know that there is a chance, whatever percentage it may be, that my MS will progress. Whether it’s tomorrow, next year, or when I’m 50. And even though my medication helps to slow down the progression, it doesn’t stop it.
Which brings me to the joy of medication.
Although I’ve changed medications for the pain side of things a few times, my MS medication itself has been the same since day 1.
The fun part about my MS medication is that it lowers my immune system quite a bit. Which means I’m a lot more susceptible to illnesses. Anything that’s contagious, I’m very likely to pick up if I come into contact with. Which is why I’m always sick with colds. I now have a permanent sniffle!
The other problem with that is, it takes me longer to overcome colds and bugs and things like that. For example, a normal 24 hour bug could take me a few days, even a week, to recover from. And, being sick also lowers your immune system. So it’s like a bad cycle…
It’s been three years and I can tell you, honestly, I am so over taking medication!
Two in the morning, one at lunch, four at night, and if I take my vitamin D tablets, that’s another four tablets.
Including VitD that’s 11 tablets a day. 11! Now I know it isn’t really that many tablets, and there’s people out there who take a lot more, but for me, that is a lot. And knowing that at the moment, until a cure comes along, that could be for the rest of my life.
I’m glad my MS medication is on the PBS though. For the fact that if it wasn’t, I would not be able to afford it. Without the PBS it’s about 2k a month. Stuff that!
I’m in a bit of a tough spot at the moment.
I really want to take a break from medication. Not a long one! Kind of like a detox.
I basically want to see if I start to feel better, or healthier, without all the drugs in my system. A lot of people have talked about how stopping medication actually made them feel better, and by better they mean healthier. And right now, I’m not very healthy at all.
The downside of stopping is that without the medication the risk of progression is high. So even though I may feel healthier for a little bit, it could make my MS worse quicker.
I know how stupid it sounds. I want to risk my MS getting worse just so I can have a moment of no drugs and the chance of feeling a bit like the old me again. But the big question is, who would support my stupid decision
Surely no one would! Which is why I am yet to make that decision…
I sure do hate this disease though.
I hate that some days when I go out and do things it takes me days to recover from it.
I hate that I’m seen as lazy. I’m NOT being lazy. I’m resting or recovering.
I hate that it has destroyed the old me.
I hate that it has spiked my depression and anxiety.
I hate the guilt that comes along with it. I haven’t worked this year, and that is causing financial strain on us. And it sucks knowing that it’s because of me. I could go on for hours about that, but that’s not a story for now.
I hate that it is unpredictable.
I hate that I sometimes have to cancel plans because of pain or fatigue.
I’ve really struggled with fatigue, especially over the past 6-12 months. And it is really hard to explain to people that it’s more than just being tired.
I could have 8 hours sleep, which would usually make a person feel refreshed in the morning. Not me. I wake up still exhausted and tired. It’s why I have a lot of lazy days. I’m just too tired and exhausted to be able to do anything. I rarely feel refreshed these days. Coffee does help, to a small degree, but not like it used to. It makes me feel more perky and more human, but all I would love is to feel like I’ve got enough sleep.
The other issue I have with sleep these days is the getting to sleep. It usually takes me hours to get to sleep. And I don’t know if it’s because of being over tired, or just the fatigue, or if it’s because I have a constant painful buzzing feeling in my lower legs and feet that when I’m in bed I notice it more and it keeps me up.
I put the tv on in bed every night. And a lot of people tell me that’s the reason I can’t sleep, as it keeps my brain active. I’m not saying they’re wrong, but the reason I do this, as well as play stupid games on my phone, is that it keeps my brain focused on something else. I can’t just go to bed and have my eyes closed until I fall asleep, because I notice the pain more, and that will keep me awake. So I put YouTube videos on that I’ve seen a million times and can just listen to it, until I fall asleep. It’s stupid, but it is the only thing I can really do…
Please know I am never trying to avoid social situations. Nor am I trying to avoid you.
If I tell you I’m fine, it normally means I’m in a lot of pain, and that I’m having a bad day, but I feel like I’m too much of a burden or don’t want to sound like I’m always complaining.
I will openly admit that at the moment I cry. Almost every day. Not always because I’m in pain, but because I’m scared. I’m scared to be a burden, and I’m scared that one day I’ll need so much help from people that they won’t want to help me anymore. I’m trying to be as strong as I can, but I’ve started to crack.
I’m sorry that I make very inappropriate jokes about my future with MS, but if I can’t laugh about it, I would only feel worse. It’s how I cope. So, for my sake, if I make a joke, don’t get angry at me. At least pretend to laugh, I’ll even accept pity laughs, haha!
I apologise if I talk about my disease a lot. I know it can probably be annoying, but it just helps me, in a strange way.
But most of all, thank you. Thank you for those staying by my side and loving me. It’s all I could ever ask for.
I love you all.
It seems like such a long time, but when you really think about it, it isn’t. I’m stuck with this disease until there’s a cure. And that’s going to be longer than 3 years…
I may as well keep working on trying to be friends with this disease haha.
And in honour of my friendship anniversary, I shall be saving up to get a pixel MS Ribbon as a tattoo.
Thanks for all those who read this post!
Apologies for those who were looking forward to it being a vlog. I’ll be vlogging my next post.
Till then, take care!