What MS feels like in your mind

What multiple sclerosis feels like on a mental level? How does it affect your mind? These are questions a lot of people wonder about: those with MS, wondering how others feel with the illness they share. Or people without MS, like your family, your friends, just curious how you are really feeling. And then there are those that ask that question as well, simply because they don’t believe a word of what you’re saying.

These are questions I sometimes ask myself, because the symptoms come and go, change and get better or worse. Disappear altogether while new ones appear. So what goes on in your mind with the constant changes? Knowing what MS feels like if you have MS yourself, that kind of makes you an expert patient… Of yourself.

I’ve met all three types of people; some are really honest about it while others don’t want to talk about it. Then there’s your family and friends who want to hear all about it: how, what, where, when, how many times, how bad… Those are the questions that you will continue to hear for the rest of your life because they are worried about you and are looking out for you… And then there’s the questions that are asked in such a way to make you trip over “lies” about something that is completely life-changing for you, so why would you want to lie about it?

I’ve still to figure out why some people react the way they do. Your fellow MS-buddies will be completely honest with you because they know exactly what you’re going through whether they want to talk about their own experiences or not. Your friends and family may tell you they can handle your illness when in fact they suffer because you’re suffering. The nastiness though always comes from those who think you are putting on a show, or those who think that only they can get sick and you can’t, and those that just don’t want you to be happy, even when you’re sick.

In my humble opinion, I think it’s quite important to be honest with yourself on a mental level because, before you can deal with the nasty kind of people, be sure you know yourself first. Write down what you’re feeling physically and how it affects you mentally, and try to understand it by talking to a GP, a neurologist or someone else who has MS. Your GP and neurologist know all the technicalities of MS, how the brain is affected, how it develops etc. But only YOU know what it FEELS like (unless you’re a neurologist with MS, then you know absolutely everything about it!).

Only you know how deep the pain is, how bad the numbness or pins and needles are, or how severe your fatigue is. So be honest with yourself about your illness. Talk with yourself and keep a diary of your symptoms because if and when you are honest with yourself, you will pave the way forward to accepting this dreadful illness into your life. It may and probably will take a while before you do, but the rewards for being honest with yourself about how bad/severe your MS is, those rewards will be huge.

Reaching out – in my case – has proven to be one of the best decisions I’ve made shortly after being diagnosed. I needed time to deal with it in my mind before reaching out though. My first step in that direction was a lovely girl at work. I had an inkling she had MS and I walked up to her and asked if I could ask her a question. I was sad to hear she also had MS but we ended up having such good chats about being diagnosed, medication, and dealing with it, and afterwards I was happy I opened up about my fears and my questions. It opened my eyes about how other people deal with it and how I shouldn’t deal with it. To this day I can still very well remember a lot of those chats, even when my memory escapes from time to time!

Since then, I’ve had quite frank chats with my family, and I try to involve them as much as possible in my daily life, even though we don’t live in the same country. It works though and I try to schedule some of my hospital appointments around the visits of my mum and I am quite honest with her where I am right at that time in my MS-life. She’s seen me embarrassed about my symptoms when I went home shortly after being diagnosed and it must’ve been very hard on my mum and step-dad to see me having tremors so badly I could not hold my knife and fork.

My mum’s also seen me cry, doubt, fight and face up to my fears, and every time she was learning at the same time as I was learning to get along with my illness. I’ve also had quite frank chats with some of my friends, although sometimes I feel I want to talk about something else than my illness. That is why I don’t always actively participate in online forums on MS, or on MS-pages on Facebook anymore; but if I feel the need to reach out, then I will contribute. I want and need to have moments in my life, though when it’s not about my MS or MS in general. Like the famous saying goes: “I may have MS but MS does not have me” so sometimes I just want to chill and enjoy life as a “normal” person.

Facebook (for example) is great for educating the masses about an illness like MS, or any other illness for that matter. I’m my own ambassador and now I feel quite relaxed talking about it on such pages. MSers are extremely tolerant and caring people; if you are not visible to them in some form or another, they’ll know and accept that you need some space while still worrying about you. We check in on each other, give each other support and answer MS-specific questions when needed. We might never meet each other in real life because some of us are living in different hemispheres, but we’re always there for each other. Long live the internet and social networking sites so!

And then, then you have the nasty kind of people who are just out to hurt you. I’ve met people on buses where I had to beg for 3 minutes for a seat (hello!? Is my walking stick and the way I look really invisible to all of you on this bus??), or I had people commenting on my balance problems one Monday morning, saying “Jeez, off to work and still drunk.” Same goes for the slurring of words.. Once a cab driver refused to continue talking to me because he also thought I was drunk. Or people staring at you because you look like a drug user with black rings under your eyes of fatigue. I am a drug user alright, but one of the prescribed-tablets-kinda-drug-user!

No illegal drugs will ever enter my system yet people stare at you or say something about you and they don’t realize that you are actually walking around with an illness that can’t be cured, that you are taking 12 kinds of prescription drugs to keep you talking, walking and behaving in a fashionable way. That you don’t need this kind of negativity because stress makes your illness worse, that you wake up in the middle of the night of eye pains, of neuropathic pains, of headaches as a side effect of all the medication you HAVE to take to keep you functioning. Or that you had to give up work at the age of 36,5 to choose for your health instead of choosing financial wealth. That, while you are the one who was diagnosed with MS, your whole family, your friends, your workplace and god know who else, has had to adapt the way they socialize with you, work with you and live with you because you are just not the kind of person anymore as you were before MS entered your life.

To those people, those nasty, ignorant and selfish people, I sometimes want to put up my middle finger. Friends and family know I never use that kind of non-verbal communication, but to those who have talked behind my back – or yours – be sure I want to stick my middle finger up to you because, until you are diagnosed with MS yourself, you will NEVER know what it’s like. Obviously I’ve never done that middle-finger act in real life, but in my mind, I just want to, just to say: “You don’t know what goes on in my life, so scr*w you if you want to judge me like you do!” A bit more understanding in our oh-so-busy-and-materialistic-world would not go astray. But you know what… I stopped caring about what others think of me.  Because you are who you are, and if people cannot accept you for what you are, then they don’t deserve you. Or like that other very philosophical saying goes: “If you can’t accept me at my worst, then you definitely don’t deserve me at my best!”

© WVE and Ireland, MS and Me, 2011-2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

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2 Comments

  1. grepomania says:

    Very interesting writing ….I’ve just posted (more like vented) for the first time..I don’t know if talking more about it will help, as I am normally a very closed person, but quick reaction..I felt a bit better. I enjoy seeing other MSers views on things. Thank you

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