Friday 13 April 2012

My MS excuse

It's been a while since I updated my blog. Since my return to work, my life seems to be one long roller coaster of getting up, work, going to bed, getting up, work, going to bed. And so the cycle continues.
My energy levels are at an all time low and I am permanently tired.
But it got me thinking.
Until June 2011, I didn't know I had MS. I felt tired all the time, but I kept going because I didn't know it wasn't just tiredness but actually MS fatigue.
In my pre-diagnoses days when I obviously had MS but didn't know I had it, I didn't allow myself to stop. I maintained a very active social life. I worked extra shifts. Sometimes on a Friday night, I'd volunteer to do the overnight shift after a full day of working using all of Saturday to catch up on my sleep and then by 8pm, I'd be on the bus to town to meet my friends and dance the night away stumbling through the door at about 3am.
It seems like a dream when I think about it now - I was totally wiped out on a permanent basis but I kept going. I thought that everyone got tired like me and that it was completely normal.
But now I have a reason for why I feel so half-baked all the time. Why I feel like I am functioning at under 100% the majority of my waking hours.
And suddenly it has become a reason... no, that's the wrong word. It's become an excuse for me to avoid social occasions. It's become an excuse to opt out of things that I would have forced myself to do pre-diagnoses.
This realisation has made me think that although it is a relief to have a diagnoses about the 'physical' symptoms of MS, it has actually had a really negative effect on my outlook on whether I can do something or not.
I notice my automatic reaction to the possibility of a weekend away or a night out or a shopping trip is always to think: "I'll be too tired - I have MS you know."
Sometimes, I'll speak the words aloud. Other times I'll agree to go to the said event and then pull out the day before citing those reasons of fatigue. Occasionally I'll go - have a blast and feel good I did something even if it did leave me feeling too wiped out to carry my handbag up the stairs on my way to bed.
On analysing my reaction to this realisation that MS has become my fail-safe excuse to avoid doing things (I mean who is really going to argue with me that I won't feel awful if I do something they want me to do - mentioning my old friend MS has people recoiling in a horror of not understanding and bringing to life that at-the-moment hidden thing I have?) I am experiencing a whole range of emotions.
I feel cross and narky at my own sappiness.
I feel slightly miffed that I have let MS do this to me - I could do things before so why not now?!
I feel guilty - guilty for my loss of the experience and guilty for not sharing that experience with people who wanted me there. Guilty for letting MS do this to me. Just plain old guilty.
I just feel ever so sad and mourn that life I've lost and that part of me that would put aside my own body weaknesses to embrace life.
I suddenly feel like I have allowed MS to change me. Instead of recognising I have MS and getting on with life, I have unwittingly let it creep into my very being and have let it alter who I am. And this despite my efforts that I would not allow this to happen.
Will this realisation change my outlook? I hope so.

1 comment:

  1. Sometimes it's a high-wire act to balance the competing components of living with MS. I have had the illness for many years and found that "denial" can actually have a useful role in keeping a check on the potential for the illness to take over one's life. There are of course physical symptoms that are hard to deny and should receive medical attention if available. However, as I said in this poem a couple years ago:

    Given enough time,
    anything will seem normal
    and familiar.

    I will not allow
    MS to appear normal.
    Absolutely not.

    I want to dream on.
    Somewhere there’s a rainbow’s end.
    I aim to find it.