Hi. I’m Kristine, and I’m 27. You probably don’t know me. I was active in this forum in the months leading up to my diagnosis and eventually surgery. This foum really was a place of support.
Today I’m back, because it’s a day of celebration. My second birthday. And I wanted to share my experience with anyone who is going through the uncertainty, fear, disbelief, anger, pain that I went through. This is a long one, so bare with me.
I want to tell you that no matter how bad things might seem, it can get better for you. Before I kew I would have the surgery, I was getting worse and worse so fast, that I thought soon I’d be tied to my bed for good. That’s how fatigued I was. All the headaches and pain aside, I thought I’d die in 5 - 10 years, if I don’t pass out in the middle of a street and get hit by a car. I really felt I was as functional as a decorative pillow.
It was hard. The hardest thing I have ever went through. But I didn’t give up, because that’s not what I do.
Basically, I had lived for ~ 9 years thinking I’m just lazy. I thought everyone felt just like me, and I was just weak and had to push through it.
Feeling too tired to move? You have to go out more! You have to work out more! You have to do more! Can’t breathe, especially when you lay down? Don’t be stupid! You need to see a psyciatrist! So I did.
I listened to everyone else but me until it got so bad, I had some kind of a paradigm shift.
Many years ago a neurologist had told me that some part of my brain has descended and it probably causes my fatigue, but thre’s nothing to be done about it. She made it look like it’s nothing special. But now, everything I had thought was true, didn’t make sense anymore. At last, I knew, in reality things were different. I didn’t have the name of the diagnosis she had made ~7 years ago. I just remembered how she described it. So I started searching online. I came across a Chiari Malformation. Reading about it, it was like someone had written what my presonal symptoms were. Luckily I had the MRI images and I could comfirm, I’d found the right diagnosis. I could start my research into it and plan on what steps to take to confirm(or deny) it with the right doctor. It wasn’t that simple of corse, but you get the gist.
When I finally got to the surgery, exactly one year ago, I felt so happy! I had read all the horror stories of pain and complications, but I didn’t care. This was the day that opened the doors to a better future. I was truly happy! I din’t get my hopes up, because I understoot there was a chance I wouldn’t get better, but doing something about it was enough. It was the happiest day of my life.
Today things are much better than I dared to imagine. So I think I’m qualified to tell you what to do and how to think if you are somewhere in your Chiari surgery journey.
Things can get better, but in order for that to be possible, you need to create the right environment for that success to be inevitable. You don’t have to go and climb a mountain in a single day. If you are as tired as I was, everything you do will take time and it will be hard. But that doesn’t mean it’s not doable. Just take one step at a time. Do a research on Chiari, on other possible causes, surgery, its outcomes. Research the recovery process. Do not for a single second assume the surgery is a miracle cure. It will adjust your body to the defect. It will not be a portal to another “normal” life.
Don’t live in the “It’s not fair” mindset! Does the cerebellum care if it’s fair or not? Will your definition of fair cure you? No. It won’t. What will help you? The right attitude. Those thoughts and actions that will move you forward. Do not hold on to the things and thoughts that hold you back! If you want to get better, you will have to eliminate the habits and things that hurt you. For this, I highly recommend reading the book “7 Habits of Higly Effective People”.
If you get the surgery, you have to aknowledge the fact that you have to work hard to create the optimal environment for a successful recovery. You have to understand that your body and mind has been enduring a great deal of stress and pain for most likely at least a few years. You need time to recover from all of that. I know you may not have income because of this condition. I haven’t been able to work for ~ 2 years. Now I’m getting a disability benefit, which is 64 euros a month(roughly the same in dollars). My boyfriend has been working for both of us and rarely has a day off and we still can’t pay our bills. But I’m still taking time to recover properly. Why? Whell, what good will it do us If I mess this up? In the long run it’s better for both of us if we have less money now, but I increase my chances for the future.
My recovery was slow. 7 months in, and I still wasn’t sure I would get well enough to work one day. In the mean time I was studying. Very slowly, but still. 9 months in and with confidence I could say I’m much better than 2 months ago, but not good enough. In the worst case scenario I was much better than before the surgery. Then around a month ago I startd treating my vitamin D deficiency (about which the NS warned me about) and things got so much better!
Then, I developed headache again(the usual meds didn’t help, it would go on for a week), pressure in the head and thought the good times were over. So I saw a neurologist and went on meds. And now, I have to say, I’ve gotten so good, I could work full time!
I’m still studying. In January I applied for and got a Google scholarship for an Android Basics course. I already applied for another scolarship.
With my new skills and the successful recovery, I’m on my way to a job I’ll love.
I hope my post didn’t seem too harsh. My intension was to point out that true success comes from the right actions and most important, fundamental values. Your personal values. Educate yourself and follow your beliefs, and you’ll be ok!