Day 186

I spent this whole day laying down on my bed. My waist and legs felt very heavy and almost immobile. Sleeping throughout the day meant my insomnia would get worse at night, so I was kind of disappointed with myself. What's more, whenever I sleep, I'll have lucid dream. Inevitably, I woke up this late afternoon with some movie-like dreams. At the end of the day, I wish I were energised enough to stay awake until the normal bedtime arrived. Unfortunately, that's not an easy thing to do when you have MS.

I can't count how many people have "advised" me to sleep early. It happened so frequently that I have started to ignore them because otherwise I would get irritable and respond with contempt. Sad to say, it's not the only phrase that usually drives me nuts. I know I've already shared a few of 'things I wish people stop saying to me' on several past posts. I found a few other bloggers with MS also have shared similar topic.

Just to recap, I'm re-posting some of the list on MS & Things People Should NOT Say from MultipleSclerosis.net, in case anyone who's reading this will meet someone with MS and wonders about what not to say to him/her:

• You don’t look sick
• You shouldn’t drink (this or that)
• You should drink (this or that)
• OMG this diet cures MS
• OMG this vitamin will cure your symptoms
• Aren’t you too healthy-looking to have MS?
• Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS
• Well aren’t you taking your meds?? (Yes….) Then why is your MS bothering you still?
• Are you contagious?
• You shouldn’t eat (this or that)…
• You should eat (this or that)
• What did you do to get MS?
• How DID you get that?
• If the heat bothers you, don’t be in it… or move…
• I heard a vaccine caused it
• Can’t you just walk slower?
• Why are you dragging one of your feet?
• Why are you always so tired? It can’t be that bad…
• Well if you’re in remission, why are you on meds?
• That celebrity with MS seems just fine, why aren’t you?
• Do you take enough vitamins?
• Are you sure it’s MS…? How can doctors be so sure?
• Stop using MS as an excuse… you can’t feel that way ALL the time.
• Maybe you just need to try a little harder.
• Why don’t you try a different medication, that doesn’t cause so many side effects?
• You seemed fine the other day…
• You slept ALL night, how can you be so tired?
• If you're tired, why are you insomniac?
• MS… isn’t that the muscle illness? (No. That’s MD = Muscular Dystrophy)
• I thought it's your bones/muscles/legs/feet that aren't working!
• Why do you keep forgetting things?
• Oh TRUST me… I know exactly how you feel!
• Oh, you should just exercise more…
• It really can’t be that bad…
• Get well soon!
• Just be happy/cheerful/joyful
• Laughter is the best medicine
• ((And for the Christians, please stop sending me Proverbs 17:22!!))

I know it seems like people with MS are super-sensitive and get irritated very easily. I hate to admit that it's true. As our immune system continues damaging our myelin sheath (which is used for transmitting 'data' from our brain, e.g.: responses, perception, sensitivity, control, etc), we're losing our ability to manage our emotional reaction. It's something that makes me frustrated because I don't enjoy turning into a Hulk by small things or simple phrases people (who don't mean to hurt me) say to me.

These phrases may come up in any conversation and if that happens, don't punish yourself. MS people could sense genuineness and will forgive you anyway. Please also forgive us when we appear to be cold or cynical or sarcastic. Personally, I pray a lot to practice gentleness in my interaction with other people. I still fail a thousand times.