msandmylife.org

sleeping has become a puzzle, by that I mean trying to get comfortable without back pain, or pain in my arm from it falling asleep. I have to stack pillows under my back, maybe my leg. I lay on my side with pillows behind me, it’s a sight to see sometimes. I wake up in the morning most days still with pain in my back, and I didn’t even lay on it. Laying directly on my back hurts like hell in my lower back. I don’t know why it just started recently, I can lay on pillow and it helps a little, but not much. I have to get creative when sleeping, because it’s hard to get comfortable. It’s hard to sleep like a normal person. It’s hard to get a goods night sleep when your in pain from trying to lay peacefully.

These last 2 years have been very stressful, sad, challenging and unknowing. The first of the year my uncle passed away, 10 days later I was diagnosed with MS, which affected my vision mostly. About a year later my cousin passed away, then my step dad. Oh and did I mention a pandemic Covid 19 was just starting. To say it’s been hard is an understatement, there have been times that I’ve cried my self to sleep. Days that I didn’t want to get out of the bed, days where I questioned if it would be easier if I were gone. But I managed to make it to the next day. I manage to adjust to all the things that are being thrown at me. I manage to live every day like it’s my last. I’m thankful to still be alive. I’m thankful that I can still work and I’m able to still take care of myself. I’m thankful for my Fiancé and my family who supports me, because I do need help sometimes and they are right there to help any way they can, These last 2 years have been hard, but I hope to have many more.

Today has been a good day so far. My vision wasn’t blurry when woke up, my back wasn’t hurting. I was able to get up and get moving with no problem. Now after working 8 hrs. things were definitely different. I needed to sit down several times. Before my shower, before I cooked dinner, after I cooked dinner, basically before I did anything productive. Sometimes things take longer but they eventually get done. If not today then maybe tomorrow.

Have you ever slept all day, wake up and still feel like you could go back to sleep. I feel like that most days. I have to motivate myself to get moving everyday. I have to tell my self, you can do this, it’ll be over soon. Once I get up and get moving my body starts to wake up. I’m still tired but I’m able to function, I’m able to get some things done. I can clean, cook, do laundry and 50 other things at once like I used to without taking several breaks, but I can do it. It just takes a little longer, and sometimes I need a little help. This gets frustrating at times because I used to cod do those things no time, now sometimes I’m like you can’t do nothing, you need help, but it’s hard for me to ask for help, when I never had to. Another thing I have to adjust to doing.

So I noticed my heart would be beating fast even though I would only be laying in bed. So I did what everyone does when they want to self diagnose themselves. I searched on Google, found out I could be having a heart attack, and reached out to my doctor. She wanted me to get some blood work done instead of going to hospital. I did that and found out my potassium was very low. This is what was causing my heart palpitations. So after taking potassium ? for about a week it started getting better, and eventually went away. Thankfully this was an easy fix, but it’s not going to go away. I have to have it checked every couple of months now, and every so often I have to take medication.

Today was not a good day. I had my annual eye exam and my vision has gotten worse. I already knew this because of my appointments with my specialists and the fact that my vision is blurry more often. I was hoping it would stay the same for a while, but now I just don’t know. I don’t know what to expect from one day to the next. I don’t know if my other eye will ever be affected, or if only the same eye will be experiencing symptoms. I don’t really know how worse it will get, or even when. Not knowing is hard, Not knowing is stressful, not knowing is my life now. I go about my day preparing for the worse, and happy everyday I wake up and I’m able to care for myself, everyday I’m able to see, everyday I’m able to talk and communicate. So even though today was a bad day, Today was today, and tomorrow will be different.

So before I was diagnosed with MS, I started having symptoms that my dr couldn’t really explain why they were happening. First they thought I had Carpal Tunnel Syndrome, which after 2yrs they determined i actually had a pinched nerve in my elbow. From banging my elbow they said, several times. I couldn’t recall doing that, but I’m like OK. Then there was the Tendonitis. You play any sports, I’m like nope again. Then there was the sprained rotator cuff. No doc, I have no idea how I could have done this. So after Xrays, therapy, and almost nerve repair. Surgery. I was finally diagnosed with MS. Well I did have to lose vision first, but at least it all makes sense now.

I may look like I’m ok, but I’m not. I may look like I’m not in pain, but I am. I may go about my day like I’m ok, but I’m not ok. I’m managing, I have things to do, I have to adjust to my life now. I know before this diagnosis I didn’t know how things were going to be. Now I really don’t know how things are going to be. I could wake up tomorrow a totally different person, I could have a different set of problems than I had the day before. Having these thoughts in the back of your mind is tiresome. Waiting for things to happen is stressful at times. I must go on, I must put one foot in front of the other. Just know I may look ok, but I am not.

Driving, I can’t see as good as i used to. I never had 20/20 but now when I’m driving I second guess my self all the time. I check for traffic several times before I go. Just because sometimes it seems I didn’t see something the first time. My vision has gotten to the point where I may not be able to pass the next driving eye exam. If this happens, that means I’ll have to make another adjustment in my already ever changing life. I was kind of sad and upset about that, but I have to remember things could be worse. What ever doesn’t kill us makes us stronger right.

After a few days in the hospital on a daily Solumedrol infusion, I was able to go home. My vision is better but it’s not back to where it was before. Every day I wake up is a blessing, but it’s also a struggle. I’m always in pain, my hands or legs are always tingling. I get sharp pains out of no where, they come and go. My pain levels go from 0-10 all day. It seems the more I learn about this disease, the more questions I have, but I can never really get a real answer. It’s really hard to explain what I go through every day to someone who doesn’t have MS, so I keep it in. I found out it’s better to talk about it, which is why I decided to do that here.