MS Has Changed My Life Completely
This is a little lengthy but I hope you all get to read and give me some insight on your journeys and advice on how to get through mine. I'll try to make it as short and to the point as possible. I also hope that this is cathartic for me.
Hiding my pain
For me my MS journey began during 2017 after I experienced extreme blurry vision and tingling and numbness in my limbs. I have always suffered from migraines so that was not a new symptom for me, but the rest were. After lots of testing, I was diagnosed in Nov. of 2017. During this time, I was helping out thousands of people affected by hurricanes Maria and Irma. I was hiding my pain. I was hiding my symptoms. I did not want anyone to stop me from my mission. I was feeling immense pain all over my body. Going through Tylenol like they were vitamins.
Fast forward to mid March 2018. Every year I take a vacation with the same group of friends, to the same place. It is our "fun" trip for the year. Except this year, it was not fun for me. I spent 4 out of the 6 days in the hotel in bed. I took the time to tell them what I had and what was going on. I was in bed because I could not feel my legs, I was extremely fatigued, and my vision was blurry. And again, the pain I was feeling throughout my body was indescribable.
Falling a lot
About a month ago, I lost my gait and fell. I hit my head so hard I started to seize. When I began to communicate (luckily I was with a friend and my god daughter, because I am typically alone) I started to slur, according to them - I do not remember anything. I let the moment pass. I did not want to go to the hospital. Two days later, I felt like I was having a stroke. I went to the hospital. Explained what had happened. And after many tests - diagnosis: I had a brain bleed. All because I lost sensation in my legs and fell (I've been falling a lot. I tell people I'm clumsy. But the people that truly know me, know that this is far from the truth.)
MS has completely disrupted my life. I am hardly at work. Which means my finances have been extremely affected. I was the type to work 2 and 3 jobs. And now I feel extremely depressed because I cannot even work one.
I am used to being the one giving and offering help. And now I am in a position where I need financial help. My meds, even with insurance, are about two thousand a month. I've applied for every single grant I could find. I've applied for government assistance, to no avail.
Santa will not be coming
This year, we are not celebrating holidays. I have a 6 year old daughter. I still have not told her Santa will not be coming this year for us. (And again, depression takes its course as MS affects her, an innocent bystander.) I do not have a family as a support system.
MS is the most misunderstood diagnosis. I am 31 years old. So people see me, and they see a young person that they feel is strong. They don't see the pain, they don't see the depression, they don't see MS. They don't see how hard it is for me to get out of bed in the mornings. They don't see how fatigued I always am. They don't see that when I walk, pain fills my body. So my answer every time anyone asks how I'm doing - "I'm fine."
MS is a lonely place
Reading all of your stories has shown me how similar we all are despite our differences. Again, I hope this becomes a forum that will help me to speak with people that actually understand me. MS is a lonely place. MS is a frustrating place. MS has caused me to lose a part of myself I will not ever get back.
How many specialists did you see before finding "The One"?