I’m only human

images6“I’m only human.”

It’s a phrase we all use sometimes to explain unwanted behaviours and/or consequences. Friedrich Nietzsche would say, ‘Human, all too human’, while I wonder why we simply do the things we do without some foresight, afterthought, or a memory spark that could have shown us how to avoid running into trouble.

My failures or dodgy flaws?

I can be as silly as a young pup, crashing into you or the furniture as I go, have a memory the size of an ant, or simply be as tired as old, worn wallpaper. More than once I ran into myself at lightning speed like atom particles do in the Large Hadron Collider in CERN, and as a result, ended up in hospital in need of IV steroid treatment to get me up and running again. Because of this, my body itself reached the expiry date on steroid use, and it refuses to let it benefit me. In other words, steroids are now a waste of time.

I’m only human.

See, anyone looking for a perfect girl should not knock on my door, but should go to a toy store to buy a Barbie doll. When I asked a friend to describe my flaws in just a few words, I was sent this biography and the title for the post instead.

“There is no Willeke-who-will-do-it-all, or a Willeke-who-is-100%-fit. She can’t do it all, she shouldn’t do it all and she’s only 50% fit. Some days her health is even less than 50%. There is no perfect Willeke, just like there is no perfect answer to who came first, the Big Bang or God. Yes, Willeke’s only human.”

Gulp…

My tongue-in-cheek reply?

‘Substantial self-nagging needed so.’

Just like you, I fall, I rise, I make mistakes, I apologise and I try to rectify them. When others are hurt, I listen to what is not being said or felt, I learn from it and move on. Just like others try to get up, I brush off my dirty knees and think that I’m thankful I am alive. I fall but I’m determined to prevail against chronic autoimmune and physical torment.

Despite often “forgetting” I am chronically ill, symptoms are a buzz in the background. Oh yes, they’re there. Just like myself they’re nagging, stubborn and sometimes a real pain in the arse. They also seem to enjoy racing up and down my body like flashing, speeding cars in Grand Theft Auto games.

Am I powerless so against my illness?

I only am, if I let it.

At some point or another since that diagnosis in April 2005, I lost some of my personal, professional and social identity, but as I became more “MS-intelligent”, feelings of insecurity disappeared. Some of my online feelers caught those of others, and networking with other chronically ill people led to more insight on how to be ill on an emotional level. Each month I continue to have hospital appointments as well as other treatments, but I now have enough knowledge to sit in the driving seat of my medical life.

So, how you do you come to terms with an illness as unpredictable as MS? How do you take over when you’re constantly in the dark of how you’ll feel in a few hours? Or when you realise that your illness is neurodegenerative, leading to further disability? With MS, worsening symptoms are sometimes combined with less/more pharmaceutical intervention or increasing side effects. How do you come to terms indeed?

Patient empowerment.

The first few weeks, months or even years after such a diagnosis, you might find it difficult to adapt to family life and/or friendships, or you might feel overwhelmed at work. Feeling overwhelmed or anxiety leads to insecurity. To feel in control, and to give you a stable enough view on your illness, try to:

  1. Stick to medical appointments as much as possible
  2. Keep in touch with your medical team when you are in between appointments or exacerbations
  3. See if you can get an email address or cell phone number for those you need most. A phone call to a nurse or doctor can do wonders.
  4. No matter how difficult it is at first, try to join a few patient groups in the hospital or connect with others in similar situations
  5. Learn what can drive your sense of security, your way of adapting and accepting your new normals

Also part of feeling insecure, is not knowing what takes priority in life. Staying employed will be the top priority to most right after diagnosis. Deciding to retire early is a hard nut to crack. It took me 1,5 years to do so myself, and even then I was happy that the final decision was out of my hands as my GP, neurologist and occupational doctor said ‘Enough is enough, your time is now.’

Looking back, my health and quality of life benefited substantially which meant that retiring was the the right choice. Of course, it’s a very personal decision, and factors like relationships, children, living far away from family and financial matters have to be looked at also.

Two questions you need to ask yourself are:
1. Do I continue being employed but with lots of absences, failed targets, annoyed colleagues, bad performance reviews and no social and/or personal life because I need to go to bed as soon as I come home from work?
OR
2. Will I decide it’s time to live a little again even when I will be cut off from colleagues/friends? This may require trying to create a new life for you and your family again. There will be loss of income also, but the time spent doing things with your family or friends will be that much more enjoyable as you will be there mentally as well as physically.

The benefits?

You get all the rest you need, you have time to attend all your hospital appointments, you could pick up that course you always wanted to do, learn a new language or learn to play an instrument. You will have oodles of time for anything you wish, and like I just mentioned, your family especially, will have someone there who is present in body, and mind.

In my case? I took up resting whenever possible. And writing.

And here you are now, reading this very post on priorities, benefits… and being all too human.
___________________________________________________________________________________________________

Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.

©WVE and Ireland, Multiple Sclerosis & Me, 2011-2015. 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 Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

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