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Tuesday, August 11, 2009

MS health blip and not taking steroids

I’ve had multiple sclerosis for nine years now and not a day goes by when I don’t learn a little more about my journey with it.

There are a few reasons why I've decided not to take steroids this time around and they are all related to the side effects:

  1. I loathe the weight gain but even worse is the moon-shaped face. Seriously, over the course of the years I’ve ‘lost’ me, and trust me, it’s a weird feeling.
  2. The primary reason is how ‘out-of-it’ steroids make me – especially in the week following the short, sharp course. Withdrawal is horrendous.
Yes, steroids can and do help get me through whatever loss I’m experiencing at the time – for me that’s often been my legs and/or vision. I thank God that these body parts eventually return albeit not to their former glory. This time I've been luckier - it's primarily an exacerbation of the dizziness/vertigo and chronic fatigue.

So, what have I learned during this episode?

  • I always assumed that it’s the steroids that make me so ill especially during the second or third week of a relapse. Now, I’m not so sure.

Sunday was my worst day yet. I felt like I was recovering and then, BANG, I’m worse than ever.
  • So, I’m now wondering whether that’s the relapse per se and *not* a side effect from the steroids.

I’m finally learning that I can’t rush a recovery no matter how hard I try. In fact, I’m thinking the harder I try the longer it’ll take.

  • So, I’m learning to be kinder to myself.
I’ve also discovered that with the exception of my hubby, *nobody*, be they friend or family, truly ‘gets’ what MS actually does to a body. Some people assume that because I ‘give in’ and spend times in bed aka ‘duvet’ days that I must be depressed. Not so. A relapse is the one time that for the most part, I accept things are what they are. It’s a necessary means to give me the strength to cope with the many symptoms that I experience every day once I’m back to my ‘normal’ self.

Yes, I get frustrated. Yes, I get fed-up. Yes, I also have the occasional angry moments. But, no, I’m not in bed because I’m depressed. I’m in bed because I’m going through an intensive blip of the multiple sclerosis. The symptoms are the same as those I’m used to coping with on a normal, day to day basis. It’s just that they’re more intense and literally stop me in my tracks.

I believe that this intensity is my body’s way of enforcing a period of rest – so I can resume daily life stronger than before.

I guess the main learning curve for me is:
  • Respecting my body *with* the MS
  • Pleasing myself and not other people’s expectations.
and the hardest one of all is:
  • Being kind to myself because I deserve it!

Thanks for listening.


Biddy said...

Hugs, it must be tough. In most things you know yourself best and why and what you need to do to get through. This has reminded me that even in the little things sometimes I do know best.

Nell Dixon said...

Leaving you some more hugs. Being kind to yourself and doing what your body needs is very important. As for other people, those that mind don't matter and those that matter don't mind. I can't remember who said that but I always think it's a very good quote to remember.

Henriette Gyland said...

I think it's totally sensible to listen to what your body is telling you - after all, no one knows it better than you. We all have limitations, and with a medical condition like MS even more so. Learning to pace yourself and to be kind to yourself is paramount. Hugs.

gaelikaa said...

You are a brave woman Sue. I salute you.