Congratulations to me 🙂
Today it’s 3 months since my MS diagnosis, the longest 3 months of my life and time for some reflection.
It was a Monday, 3:18 PM when the neurologist entered my hospital room and closed the door ( never a good sign ) to tell me about the MRI results, the 8 lesions in my brain and neck and that it “looks like MS”. I was kind of relieved as the other possible option for my symptoms would have been a brain tumor. So yes, I thought MS, I can do that. What followed the next minutes, to be 100% sure it’s MS, was the perfect preview of what the following months should look like – pain, fear, anger, sadness, hope. Still, the lumbar puncture was the “highlight” of all examinations so far.
On a pain scale from 1 – 10 I’d give it a 12, but looking back I was lucky as it only took one attempt, 5 mins as I heard of cases were they needed several attempts and even postponed it to another day.
I was so so positive that day, I finally knew what was wrong with me and could do something about it. The docs and nurses told me about the available drugs and that I am going to have a normal life but I could also see something like pity in their eyes.
3 months on I am still waiting to return to my old, normal life. Maybe I was too naive and too positive as I never expected my body to fall apart like it did in such a short time.
When I was diagnosed I had no feeling in my upper right side of the body only to lose it in the back and legs in the following weeks. My entire body except my left leg was numb as if one big black hole swallowed me. The first relapse within 8 weeks, 4 weeks in a neurological rehab center, 2 hospital stays and 2 rounds of Solu-Medrol IVs followed.
Yep, I guess I got pretty bad cards to begin with despite fantastic medical care and am still recovering from it.
Luckily I can feel my entire body again except the finger tips on my right hand, where it all started 4 months ago and I guess this will stay. If you are wondering how it feels – imagine something heavy fell on your fingers or you squeezed them in a door, the first pain is gone but if you touch it you get a hot and electrifying sensation in your finger tips, that’s exactly how it feels.
At least the strengths is back and I am finally able again to hold a knife and cut my own food after weeks of using only a fork/ spoon to eat.
“Feeling”, it’s all about that at the moment and sometimes I can’t remember how it was before and wonder if it’s back to normal or not.
Luckily my legs have improved, too. 4 weeks ago, after another hospital stay, my legs were gone after 30 secs, I had situations were I just could not move them off the floor anymore and had to wait a few moments. Let me tell you, this is very very scary.
Looking back I would say I crossed the dark valley and am on my way up, to the top of the mountain. My main physical issues at the moment are related to all the drugs I got over the past weeks and my Rebif injections. I still feel weak and as if someone blew out the light inside of me. It just takes way longer to recover physically and I don’t even want to start about the psychological side of it as it only started. There is so so much to think about…
So, in conclusion I can say MS is a bitch and even my positive thinking didn’t help a lot- but maybe it did and things would have been much worse with a negative mindset.
I only met up with a few friends since I am back in town but yes, I look fine – it makes me smile each time I meet someone after the dx and they tell me ” but you look fine”.
Remember, my illness is an invisible illness ( so far), if you would see my MRIs you could tell right away I am not fine, at least not my brain. I am not really fine on most days and it’s quite sad how I spend them but there are more and more better days.
I also want to use my 3 months reflection to thank my family, boyfriend and friends for their support, I hope I can give it back one day, it makes me speechless and I know I am a very lucky lady to have so many special people in my life. Maybe I can give something back with my story as I am very open about it, it’s part of me now and I don’t want to hide anything.
Cheers to the next months!