I have decided to do a mini-series of posts about life with MS, now that I’ve just passed the two-year mark. There’ll be the tough stuff and the silver linings.
This one is about the challenge of coming to terms with the diagnosis. Now, that some time has passed, I can look back and think about how it really felt and still feels.
The biggest challenge
The biggest challenge was definitely the diagnosis itself. It was a huge shock. MS came out of nowhere. I had no idea what MS even was. I was living a healthy life in ignorant bliss and disability was something that only happened to others.
Over the months, I spent a long time mourning the old me and just trying to get my head around what it all actually meant, especially for the first year until my treatment kicked in. I had a couple of relapses that year which seemed to go on forever, barely recovering in between. Spraining my ankle badly just added to the misery and I really struggled to see any positives in my new world. Suddenly, everything changed so utterly and completely. Suddenly I’m living with all this stuff that showed up all at once.
How can all these symptoms appear and be there so suddenly and so persistently?
The invisible symptoms are the worst: fatigue, forgetfulness, trouble concentrating, struggling to focus, sensitivity to noise, being agitated by too much going on, anxiety about EVERYTHING, feeling unsafe all the time, struggling to walk in the dark or when I can’t see in front of me, feeling “drunk” and fearing that people notice.
And I think the hardest thing about the invisible stuff is that you still have your old mind, the one of a healthy person who is completely unaffected by any kind of condition. This old mind is suspicious and questioning all the symptoms and wonders if I’m just being dramatic, or if I’m just making it all up because I have this new label.
your old healthy-person-thought-patterns don’t vanish overnight, in the same lightning speed as these crazy symptoms all show up
In all honesty, the healthy me, before MS, would have thought exactly that. I would have questioned how someone can look completely normal, smile and laugh but then suddenly turn around and complain about being terribly tired, exhausted, in pain constantly, or really struggling to do their job in the same efficient manner that they have done for 10 years – just.like.that. I would have called them a fake, a drama queen, a whiny bore, lazy even. And that right there is the hardest part – your old healthy-person-thought-patterns don’t vanish overnight, in the same lightning speed as these crazy symptoms all show up.
In conflict with myself
I questioned it all, in battle with myself over what I can and can’t achieve. I tried to push through the fatigue, only to come crashing down, badly. It’s been a massive learning process. It still is. It’s such a fine line all the time – the balance between pushing yourself but not too much, pacing yourself but not holding back too much. I’ve had many dark, dark nights. I have had moments where I just wanted to give it all up. I was tired of fighting, being brave, being positive. And I still struggle to think about the future, becoming a burden to my husband one day, losing my independence that is so important to me, passing MS on to my son, forever being a whiny bore…
Today, this has somewhat improved, as with my treatment kicking in, stability is back and I’m actually feeling pretty good, not perfect, but good. It’s giving me hope that I can stay “normal” for as long as possible and that I can make the most of my life while I’m in good shape physically. The invisible symptoms are with me though, some days more, some less. They are here to not let me forget that life will never be the same again.