Newly diagnosed with MS?

Sometimes it seems that the hardest battles you will ever have to fight will be the battles with yourself. You strive to get through hours of hard grinding for upcoming exams, or you want to get fit after Christmas and New Year’s parties. We’ve all been there and the older you get and the harder you seem to try, the more difficult it gets.

I’m no stranger to being my own worst enemy when it boils down to fighting battles. Whatever about discussions with friends and family, I seem to become my own worst opponent when faced with health issues. As years go by, and the wiser I should become, I simply cannot learn a permanent lesson of how not to be my worst enemy.

Since being diagnosed with relapsing/remitting multiple sclerosis in 2005, I’ve told my ex-employer and ex-colleagues countless times that “this time I learned my lesson and next time I will not work too hard, too long, too much etc” after being off sick again. Seven years later I am telling friends and family the same thing, even when I had to quit my job in 2009 because of my MS. I know I have to pace myself but will I ever learn?

Being diagnosed is for some people the best thing that could ever have happened to them, while others will want to curl up and die. It is never easy, even for those who think “finally I know what is wrong with me!” Getting a diagnosis of an illness that cannot be cured may seem like December 21st 2012 on a Mayan calendar. It is not the end of the world for all mankind, but it’s the end of the world as you’ve lived it so far. In come neurologists, physiotherapists and lots of other –ists, out goes your sense of being super strong. Let those people help you, but don’t let them overwhelm you.

Ask for a time-out when you feel that they’re overcrowding your personal world or your thinking. These people will only want what’s best for you (as they see it), but you must be your own MS-police and scream “stop” if you cannot breathe anymore. You are the owner of your body so you decide what happens to it. Ask specialists for advice, talk with friends, families, colleagues and then decide what you think would be the best way forward for yourself.

Don’t be like me, don’t be all gung-ho in everything you do. As soon as I was diagnosed I decided to be Miss Superwoman during the day, a bit like “I’ll show them what I can and what I will do! They haven’t seen anything yet!” But at night, after coming home from work I literally could not climb up the staircase anymore because I was so fatigued. So much for being Wonder Woman.

Sure… I am still so happy (and proud) I received two awards at work 2 years after being diagnosed: one certificate of recognition for finishing a Team Leader training and another achievement award for doing a good job on one of our accounts. Overtime? Of course I will! Come up with new ideas to help the team forward? Of course I’ll do some brainstorming! “No” was not a word I understood anymore (my mum swears I’ve never been the type of girl who would accept help, no matter how difficult it was).

I wanted to go for a Team Leader job, but sadly by then my body had decided that now was not the time for something so big. Realizing this caused a minor breakdown but breakdowns are not something I do. I am not afraid of showing weakness, but I will never allow myself to settle for anything less than what I or other people deserve.

So after work I’d go out with friends; we’d go to the cinema where for about 2 years I just couldn’t stay awake during films. Or I’d drag myself into town to meet up with friends for a chat (emphasis on “drag”). During weekends we’d go to the seaside, or watch some more films and go for a meal, but I had to give in… I was not my old physical self anymore. Severe fatigue became a daily, even hourly battle. Neuropathic pains would keep me up at night, as well as side effects from my DMDs (disease modifying drugs). Worrying about my future started to set in… will I ever be able to find a new boyfriend with my newly acquired medical status? Will I ever be able to have children? What about my life in Ireland while being from Belgium? Lots of questions… but no answers, not yet anyway.

My mind was spinning, my brother had passed away and I had lost part of myself because of losing my only sibling while having to let go of my old self also. Certain friends were not helping by “suggesting” what my life and my future should look like because they thought they knew better than I did. In the end my real illness was no match for their imaginary medical degree and I realized that friends like this was not something I needed now.

In between all that was myself, spinning wildly because I could feel my body breaking down bit by bit and getting envious of friends doing things without me because I had to cancel on them more than once, so in the end they stopped asking me along. I had become a liability to others as well as to myself.

Giving up was and still is something I don’t do easily. I should have listened to my body and my illness a bit more. Not doing so probably caused me to have to quit my job, and while I now have a sea of time to rest and relax, I am still my worst enemy. I would clean until I literally drop down or I try to stay awake when my body screams for sleep. I still fight with myself over things I could do if only I wouldn’t be forced to rest and sleep so much or be in need of pain relief and relaxation.

Thankfully time showed it was a great healer even though it will never heal my MS. My belief system changed for the better, my sense of reality also. And if anything good came from being diagnosed, it is my love, my passion and my desire to live, to do, to breathe, to enjoy and to love. I received a second chance in life, and I took it with both hands… if only I’d be able to pace myself a bit more.

So take a step back now and then. No one will hate you for it; on the contrary, people will be happy to see that you are taking care of yourself. Be kind to yourself, because if you don’t, you will pay a price you could have avoided otherwise. We owe it to ourselves to look after number one, to listen to our healthcare professionals and to listen to our own bodies. Because if you won’t, who will do it for you?© 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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    • Willeke says:

      I hope you find a balance that works well for you. It’s never easy wanting to do things and not being able to. Take care!


  1. msinthecity says:

    I agree completely, I also have always been too active and done to much… But now I try to listen, not always easy but very worthwhile


    • Willeke says:

      Exactly! It’s a very fine balancing act but the benefits are rewarding if you step back for a minute and choose to sit something out every now and then. Not always an easy choice though!


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