The following is purely a reflection of MY understanding of stuff and things about Multiple Sclerosis that I have found interesting and important or that may affect me personally.
A few things about Multiple Sclerosis that you may or may not know or realise:
- There is no cure for MS.
- The disease course of MS is different for everyone who has it, and it is therefore unpredictable. One thing is certain, someone with MS with not get better from it. But in saying this, most individuals with MS can lead a 'normal' life.
- Although the physical aspect of the disease is evident on the brain (and the spinal cord) in the way of scars (aka sclerosis), people with MS do not 'lose their mind', so to speak. The cognitive symptoms of MS can cause people with MS to become forgetful ("Um why did I open the fridge for again?") or to be slow in their thinking processes. We do not become dumber or lose our 'smarts'.
- Women with MS can have children. In fact, it is less likely that a woman will relapse while she is pregnant. There is a heightened risk in the first trimester, and towards the very end, but all in all women with MS when pregnant find they get no relapses, or they are very very mild. So women with MS can keep popping out the kiddies to avoid relapses (although I do not believe this is a recommended form of MS management).
- Yay, get preggas! Okay, but, there is a heightened risk AFTER the birth, of a relapse. If you find any of this info online that has an accompanying graph (Love a good graph!), you will notice a dramatic spike upwards in the likelihood of relapse (within the first 3 months post-baby pop out). BUT, this is followed by a drop, back to the 'likely' course of continued, slow progression of the disease/illness/whatevers.
- MS tends to be an 'invisible' disease. This means that people will have the perception that I am totally healthy, when in fact I may be suffering from MS related symptoms. For me, they might be fatigue, heat sensitivity, twitching of muscles (or the thumb dance), tingling in the legs and that damn left pinky and up to the elbow and a weakened left knee.
- Exercise and heat can bring back some symptoms temporarily, and recently I have read that getting a cold/flu can also wake Mad Sascha. This latter is not well documented, and there is a bit of debate about things like the flu vaccine being recommended to those with MS, but then some people with MS have their own story saying that the vaccine bought on their MS...debate debate!
- Individuals are typically diagnosed with MS between the ages of 20 and 40 years of age - when individuals are in the 'prime' of their lives. Going to uni, establishing a career, starting a family, planning a life etc. This 'news' can result in depression and/or anxiety. Individuals diagnosed grieve. They grieve the loss of their 'old' self, and they need to adjust to the 'new' self. For example, the idea of travel began to appeal for me, but now I need to rethink this because of stupid things like travel insurance, travelling with medication that requires refrigeration, negating activities that may exacerbate symptoms etc. I will not be covered by travel insurance for any medical issues that are a result of my MS. The likelihood of having a relapse might be low however, Mad Sascha is unpredictable, so it cannot be ruled out. And this can elevate anxiety. Plus, holidays are meant to be fun and relaxing, but how can you be that way when you feel anxious about what might happen?
- Depression and anxiety can also be a direct result of the lesions on the brain - depending where those lesions are. Some people can suffer from uncontrollable laughing or crying which are not prompted by a scenario where crying or laughing would be expected. The lesions can also affect moodiness. I used to be a real moody bitch - though I think I am better than I used to be! (Hopefully some of you who have known me since school would agree!)
- Now for something more positive. MS is manageable. And I am managing :-)
- There is a large percentage of individuals with MS who require the possession of a walking device by age 40. If I ever need a walking stick or device, I hope there are some cool ones out there! Something hip. Colourful perhaps with an interesting shape? Oh geez. If not, maybe it can be my one and only business venture!
- It is estimated that 21 000 Australians have MS (according to the MS Society).
- MS can affect balance. So when you see me stumble a little, or bump into something, it is not because I am a closet alcoholic. If you see bruises over my shins and legs, it's probably because I got my clumsy Mad Sascha on and bumped into shit. It doesn't cause much drama for me but it's just a small annoyance.
- MS does not make you lose weight. I say this, because when I was on my lose weight idea, people would say, "Oh you look great", followed by a moment of panic and a whisper asking me if it was a result of the MS. NO! I worked my ass off to lose the weight. Geez. If anything, people with MS find it difficult to control weight if they have symptoms involving their movement and/or coordination, therefore making it difficult to exercise.
- That is all I can think of for now! I will keep adding others when they come to mind.
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