Living Life with MS

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.

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