Generally, I am the only thing that goes bump in the night, when I make my regular midnight wobble to the bathroom, impacting with a few corner walls along the way.
In honour of Halloween, I thought I would change the tone of my blog for today and talk about the things that scare me. Not the ghouls and goblins of your nightmares but the very real possibilities of what gives me nightmares. The unknowing of MS. The possibilities of what could be.
I try not to dwell on the down side and try keep a positive mind set but truth be told these fears are with me every day and the worst thing is I am constantly reminded of them in my everyday struggles.
First of all, lets dissect the notion of fear.
|An unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.
|Be afraid of (someone or something) as likely to be dangerous, painful, or threatening: “farmers fear that they will lose business”.
I have read that fear is an unfounded notion in that it is not a current reality and therefore does not exist and therefore you should not be afraid of what is not real. I understand this and tell myself this everyday. Yes ,one day I may not be able to walk, see properly or dress myself but that isn’t real now and therefore should not worry about it and waste valuable time and energy thinking about it. But this is easier said than done.
Fear is generally irrational – why are you so scared of that teeny tiny spider? But it is a deep embedded psyche that is a belief that someone or something is dangerous. And it takes one hell of an argument to convince you other wise!
I have been handed the MS badge and these are the things that scare me about being part of this club:
- Not being able to walk or the loss of use of any limb – I have already had to with the loss if not being able to run and play the sports I once loved.
- Not being able to look after myself – a complete loss of independence
- Loosing my sight or having it severely impaired
- Loosing bladder/bowl control – I never want to wear adult diapers
- Loosing any cognitive ability therefore resulting in the inability to work or even converse
- Not being able to hold down a full time job again
As has been said over and over again, Multiple Sclerosis follows a varied and unpredictable course. In many people, the disease starts with a single symptom, followed by months or even years without any progression of symptoms. In others, the symptoms become worse within weeks or months.
What I find most frustrating about having MS is because it is such an individual disease, it is not helpful to compare yourself with other people who have MS. So it is difficult to prepare for the future. You have no idea what to expect.
It is important to understand that although a wide range of symptoms can occur, a given individual may experience only some of the symptoms and never have others. Some symptoms may occur once, resolve, and never return.
So my fear is embedded in the unknown. I suppose all our futures are unpredictable. But having an incurable disease puts a different spin on things.
I really try live I the moment. Because, right now, today, is a good day. I have no pain, I can see, walking is not too much of a battle and I get to take my daily afternoon nap to recharge. In essence, I actually have nothing to worry about.
I recently fell in love and am in a very loving and supportive relationship with a wonderful, strong, gorgeous and incredibly smart woman. I can honestly say that out of all the treatments I have tried, love is the best medicine for all my ailments and fears.
Going into the relationship was frightening in itself. I had to overcome the notion that someone else could cope with my MS. I didn’t have to fight this alone. Life can be “normal” again and MS is only a part of me and not who I am. She is incredibly understanding but it is important for me to very honest and open with her.
I have tried to not let the MS define me but it is difficult to not be completely preoccupied but the disease, its limitations and the constant reminders. But my partner has said time and again, she does not think of me as a sick person. People meet me and I am often met with the response “but you don’t look sick”. These are small but very necessary motivations I need to keep fighting and keep positive and not let my fears get the better of me.
This is a bit cheesy but I want to end off with a appropriate quote:
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’
I look MS in the face everyday. I take everyday as it comes .I don’t want to be afraid anymore. I must be brave.