After 3.5 years of having an invisible disease you never really get over the judgement that comes along with it.
If you saw me out and about you would never know that anything was wrong with me. Which is good, but also frustrating.
If you saw me parking in a disabled spot, let’s be honest, you’d be looking me up and down, judging. “She’s young, she doesn’t need that spot!” “Oh I bet that’s not even her disabled sticker, she’s just lazy!”. The judgement is there. A 25 year old, healthy looking person using a disabled park. It is rare, and I mean rare, that I will actually use a disabled park. But if I do, it really means I need to. It means I’m in a lot of pain and each step I take causes pain through my entire body.
The hardest judgement I find is from those who know me and do know I suffer from MS.
And look, I completely understand that not everyone is going to be able to wrap their heads around the disease and how unpredictable it is. That is why I’m always happy to educate people on it. But, at the end of the day, it’s up to them if they want to actually absorb the information or not.
The judgement from people who know you is tough. Things like ‘Oh, well she went out today, she must be better’ and ‘but you were fine yesterday afternoon’ hurt. Me being able to function at half capacity for one afternoon or day, does not make me ‘fine’ or ‘better’. It just means that I finally built up enough energy to do something.
Even when people tell me things like ‘Blah blah has MS and they’re absolutely fine’ or telling me what Blah Blah does that helps with their MS and that I should try it, makes me feel a little judged. I know some of it is meant with good intent, and I’m not saying I don’t want to try different things to manage my symptoms to try make me feel better! But, every case of MS is different. There are no identical cases.
So just because x worked for blah blah, doesn’t mean it will work for me – and that’s the hardest part. When people know more than one person with MS, it’s hard for them to not compare the two, and I know a lot of judgement comes from that.
I am usually a person who doesn’t care what people have to say about me. But when it comes to being judged about an invisible disease it really plays on my anxiety.
I know things will never change with that. People are always going to judge people. It’s just the way it is.
But if people can try to understand more about invisible diseases, then I think it would make a world of a difference. Not just for me, but for anyone who feels judged about their illnesses!
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 beinglazy. 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.
This is going to probably end up being a short blog post, but that’s okay! ?
I basically want to talk about asking for help when it comes to bad days.
This is something I find I’m having to do more and more. Especially during this bad flare up I’ve been having. I’m 25. I shouldn’t have to ask for help for simple tasks. That is why I hate having to ask for it.
A few examples of things I needed help with over the past few weeks.
Getting up. I’ve actually needed help to get out of a seat. ?
Eating. I tried to go on for as long as I could without asking for help. Holding the fork was painful. So I kept swapping hands, until I caved and asked for help.
Walking… I needed Graham to help me walk to the bathroom. How pathetic does that sound?! ?
Now, I know I can be a little bit stubborn. For example, I sat outside for 2.5 hours because I didn’t have the strength or energy to get out of the chair. I was home alone, and could have got someone to come over and help me, but I didn’t.
I don’t know what my MS has in store for me. I don’t know if it’s going to get a lot worse and I’ll have to ask for help for everything. And I’ll be honest here, I already feel like a burden… which is why I will try my hardest not to ask for help now, because I don’t know if in the future I’ll have to ask for more. I don’t want to burn out everyone around me for helping me out a lot now and needing more later on. If that makes sense?
MS sucks. It’s so hard and frustrating!
Thankfully I’ve got an appointment with my neurologist next week. So stay tuned for how that goes!
Also want to add, that I know I have friends and family who will always help me if I ask for it. And I’m forever grateful for that. ? Basically I need to be okay for asking for help, and stop being so stubborn!
As always, thanks for reading, and I’ll catch you next time! ?
I know that I’ve written on Facebook what my MS can be like on a bad day, but I thought I would write out something that’s a bit more descriptive.
I also want to say that I do and I will repeat myself a lot in blog posts. Not all will be intentional, but I just want to make people aware of this disease. And how it can effect people’s day to day lives.
I feel like I should start with a little bit of details about the disease…
I’ll try explain it in basic terms.
It’s a disease of the central nervous system. It interferes with nerve impulses within the brain, spinal cord and optic nerves.
My body attacks the myelin sheath (the protection around my nerves), which causes scaring (the lesions/white dots on MRI’s). So, pretty much, my body hates itself so much that it attacks it!
Not all MS cases are exactly the same. Firstly there are different ‘tiers’ to the disease:
Relapsing-remitting (RRMS). This is the most common form of MS, with approximately 70% of those with MS will initially begin with. RRMS is characterised by partial or total recovery after an attack/flare up.
Secondary Progressive (SPMS). This is when RRMS develops into a little bit more. Attacks and partial recovery may continue. Of the (approximate) 70% of those with RRMS, 50% will develop into SPMS within 10 years and 90% within 25 years.
Primary Progressive (PPMS). This is when your symptoms generally don’t remit. The percentage of people diagnosed with this one is lower, with only 15%.
Progressive-relapsing (PRMS). This one is the rarest of all, with only 6-10% of people having been diagnosed with it. This is characterised by obvious acute attacks.
(Source – msaustralia.org)
The thing with MS is, with each attack/flare up you have, there is increased chance of disability. Which is what the graphs under each form of MS is showing.
And although there are different forms of the disease, even those who have the relapsing-remitting (RRMS), the most common of all, each person is different. It is to do with where the MS (the lesions) are situated on the brain and spinal chord. And if you think about it, that’s a lot of area for some tiny dots. Which is why you’ll rarely, or even dare say it, never, see two identical cases.
Okay, now that you’ve got a bit more of a knowledge of the disease, let’s move on to some of the symptoms I experience and I’ll try to explain what they feel like.
Like I said before, each person is different, so I am only talking about my experiences and my symptoms here.
These are the symptoms that I’ve come across so far;
numbness/loss of sensation. I’ve had this a lot and was one of the big things that went towards my diagnosis. I don’t really need to explain what this is like, as I’m sure a lot of people have experienced general numbness or loss of sensation, for whatever reason.
Pins and needles. This is a permanent one for my hands, and very common in my legs and feet. That odd pain and ‘fuzzy’ feeling you get when blood starts circulating in that area again.
Burning/flushing. Kind of like when you get a really bad sunburn. It’s hot to touch, it’s sensitive and it just stings.
Different type of burning. Similar to that stinging feeling you get when you’ve come back inside after being out in the cold and you feel yourself ‘defrosting’.
Shaking. Similar to when you’ve had too much caffeine.
Itching. I don’t need to say what that’s similar with, but, just picture it as under your skin.
Pain. You can’t put pressure on things, feets, hands, whatever. Another simple one for you.
Fatigue. Constantly. When you’re sick, let’s say the flu, you’re always tired. You wake up tired. You manage to make yourself a coffee, but then you need to lay down on the couch.
Cognitive issues. This one is a big one for me. But although not many people really pick up on it, it’s not just me being an idiot. Some days I can’t think as quickly as I used to. I can’t get words out and sound like a drunk. Ah! That’s the best way to describe it. When you try to talk when you’re absolute white girl wasted. Sometimes your brain knows what you’re trying to say, but getting it out of your mouth and to be coherent, it’s tough!
Vision problems. Now my eye sight is already bad. But on ‘attack’ days, there’s a lot more blur. Don’t think I need to explain that one.
Muscle spasms. Again, another simple on for you.
Bladder… this is quite an embarrassing symptom. Which can be a common one. It’s just not as talked about. Imagine the bladder of a woman who’s recently had a baby. Enough said.
Weakness! This happens in attack days too. Similar to that weakness/shaky feeling you get after a really big workout.
A lot of those symptoms I have on a daily/permanent basis. But on attack days, it’s all of it. It sucks. It’s tough to live with and I’m pretty sure I’d be right in saying that it makes living with me tough. Poor Graham.
The other big issue with MS is your immune system in general! It takes longer to shake off other illnesses, colds and flus, etc. Being sick can also increase the symptoms of MS, as well as heat, stress, menstruating, and so on, can aggravate it.
I know I touched base a bit on this in my last post, but I want to talk about how those living with invisible diseases/illnesses are seen by others, and try and break that stigma.
The biggest thing is being seen as “lazy” or “flakey”. Let me expand on this!
You’re having an okay day. Your pain and fatigue isn’t too bad. And you’ve got plans to go out tonight. You manage to do something simple like, having a shower, or doing some grocery shopping. You were feeling good that it isn’t too bad of a day. You finish what ever you were doing, and bam, fatigue, pain, the whole thing, hits you like a tonne of bricks! Just getting to the lounge or to bed is an effort on its own. You know you’re done for the day, and you have to cancel your plans. This happens a lot. Even if you wake up in the morning, don’t do anything except for relax, this annoyance of pains and whatever else can hit out of the blue. Your friends may start to see you as flakey and stop inviting you places. It hurts. I’m lucky that I have a lot of amazing friends who completely understand.
Having a great support network always helps. No matter if you have an illness or what ever you’re going through. ?
I hope this post has helped you to understand what it can be like living with a chronic and invisible illness.
If you have any questions or just want to have a chat, feel free to get in touch with me.
For those who have me on Facebook, you can message me there, or just drop me a message on twitter!
Don’t judge a book by its cover. Don’t assume people are well just because of how they look.
I will be using this to basically write out life experiences, how I’m feeling and let’s be honest, probably a lot of random crap!
A lot will be on my MS journey, as well as mental health related things.
I will also say/warn that I do jump between using ‘I’ and ‘you’ a lot. It sometimes is intentional, depending on what I’m writing about, and sometimes it’s just accidental!
Let’s start with a bit of background, shall we?
I’ve struggled with mental illnesses (Depression & Anxiety) ever since I was in about year 8 or 9 – so about 2005/6. A lot of people will blame it on my ’emo’ phase. And that it was because of the music I listened to, or the way that I dressed.
That was always annoying to hear. And I can completely understand why people saw it that way. Dark clothes, dark music = dark mood, right? Nooooo! Yes, it is easy to have your mood affected by the music you listen to constantly. But my depression and that ‘black cloud’ that came along with it, started before I was listening to depressing music. And even though some of the songs I listened to had lyrics I could relate to with how I was feeling, it actually helped me.
When I felt depressed, I felt alone, even if I had friends and family around me that made me happy. I felt disconnected to people. I felt like I was different or wrong about how I felt, when so many people around me didn’t feel or think the things I did. Now, I’m not saying people who don’t have depression don’t get sad. Everyone gets sad and everyone has different levels of sad and different ways of coping. It was just that my sadness over took my brain. Even though I could be laughing and enjoying myself, the back of my mind was always saying some negative things towards myself. It was that little voice that says ‘you’re useless’ ‘everyone would be better off without you’ ‘they’ll never understand you’. And when you find a song that explains exactly how you’re feeling, or exactly what you’re going through, you connect to it.
You blast it as loud as you can, because it helps you express how you feel at that point in time. It’s a release.
As crazy as that is, that’s exactly how it was for me.
And having loving friends and family helped as well.
It took me years to manage the black cloud.
And just as I had, my MS diagnosis happened…
So here we are, 2014, only 22 years old, being told you have an incurable disease.
Luckily a comment a doctor had made the year before about some numbness I had saying it could be MS, had helped me in the lead up to the confirmed diagnosis. I had time to come to terms with it and time to research about it.
One of my first comments after diagnosis about the whole thing was ‘Hey, it could be worse!’ And having a laugh – because that’s how I cope with things. If I can’t laugh at myself, who can?
I think that everyone else, especially mum, struggled more with the ‘I have MS’ news than I did. And I was the one who would have to live it!
At that stage all I had was random numbness that used to change location and shooting nerve pain. Not great, but I could deal with that.
I started medication to help delay the progression of the disease. Medication to help with any nerve pain.
But over the (coming up to) three years now, things did get worse. And although I would say ‘it could be worse’, I wasn’t talking about my MS could be worse, that’s exactly what happened though!
I had the pain medication changed multiple times because of the amount of pain I was getting.
I was getting new symptoms popping up.
It was scary.
And just like that, the black cloud had reappeared. Along with a friend. Anxiety.
I’ve had comments from bosses who don’t understand the disease because I look perfectly fine on the outside.
I’ve had very unprofessional comments made by a boss, several times.
It’s the stigma of an invisible disease which takes a toll on you.
People see you as lazy, or making it up to get out of doing something.
And then you get the person who has been one of your supports since then, starts to crack, and you begin to feel like a failure in their eyes.
The thing with MS is that it weakens your immune system, and so does the medication. That means that I will pick up almost any bug or viral thing that is going around. What that also means is, that it takes me a lot longer than a healthy person to recover from it. A normal 24 hour bug can take me days, or even weeks to shake it.
Because of that, I’ve had a lot of time off work. Which puts a lot of strain on my job, financial situations and of course my relationship at home. This also affects my anxiety and depression.
To get rid of the toxic people that I am finding in jobs, Dad and I are starting a couple IT related businesses, so that we can work for ourselves, and work from home. (So, if you’re in need of a website for yourself, hit me up! 😉 )
I used to never try to think about the ‘what if’s’ with MS. Especially when I was first diagnosed. It wasn’t until things started to get worse that I did. What if when I stop medication so that we can try for kids, that my MS gets a lot worse? What if when I have kids I can’t play with them because of the pain, or because I’m in a wheelchair? What if my MS get’s so bad that I become more of a burden to my family, especially Graham? What if my MS get’s so bad that I can’t do the simple things in life that we never think about? Like, washing myself, getting myself to the bathroom, or even typing on a computer or playing games?!
The thing is, there’s always going to be a chance of this with MS, but I shouldn’t think about it, as it sends me in a spiral downfall.
I have had panic attacks, quite regularly, just because of this awful disease. But, I never say anything to people..
I’ve never been good at verbally describing how I feel. Which is why, quite often, I will write things out. I feel like I can be completely honest in a written sense. Even if everyone in the world was to read it, I don’t care. I just suck at finding the words to say things out loud.
So I know, that if family and close friends read this, they may have never known how I felt on certain things, just because I didn’t say anything.
Don’t get me wrong, it’s not like I don’t tell people how i feel. It’s just that they’re more likely to get the full story over a text, than in a proper conversation!
It’s not that I don’t trust the person, or that I don’t feel comfortable with them, it’s just how my brain operates. I don’t feel comfortable with myself to say exactly how I’m feeling or cause conflict. I’m scared of some people’s reactions to things I say, like being told that how I feel is stupid.
You’re an idiot for telling someone that how they feel is stupid. People feel the way they do, for whatever reason it may be. It is THEIR feelings. Not yours. -.-‘
Anywho… Although that was long winded, I feel like I’ve written what I’ve needed to write… For now.
I don’t know how often I’ll write, but follow me on twitter to keep up to date with any new blogs that come out! 🙂