Something is not right with my MS

Im sorry this is going to be long..

I can relate to this very much. I know how it is torture to not be able to "work hard" grinding in a traditional sense of a job or family. I know how hard it is to see that your MS is not the norm. You are not alone and I promise you, the longer you live with Ms the easier it gets, even if it gets harder, we just learn our bodies more and how to work with it. Sometimes that means finding the right medicine, DMT or symptom management. Sometimes we can adapt and find ways to keep from triggering our symptoms. Sometimes adapting healthy mind and body habits help. Your symptoms can flare from heat, stress, or fatigue.

I was 5 months shy of turning 27. Working 70 hours a week, going to school full time, single parent to a 3 and 4 yo who needs extra help. My doctors call my onset "traumatic" what started out as blurred vision turned to blindness for a month. Within 2 weeks half my body was paralyzed, tremendous pain, yadda yadda. It took 6 months for my symptoms to baseline. I was no longer paralyzed but the rest of my symptoms stayed at half 25 or 50% intensity and increase in severity as i exert energy. I can quickly make my eyes go completely dark if I am exerting a lot of energy. I am disabled by fatigue. I spent the first year after my diagnoses sleeping all day long. I wanted to go but my body would not let me. Then I realized my triggers. Fatigue is a major problem so I manage it. Managing my fatigue brought me back to at least able to give myself and kids the bare necessities. I traded cleaning my house for 2 months to taking them to tee ball. For 3 years my body held me captive, I could walk in the morning then need a wheelchair at night and could barely talk or think.

So barely holding it together, failing at keeping house and kids. I finally gave in and started getting help with meals and cleaning and kids. I had to sell my house and I moved my kids into a camper in my families yard. I struggle with this a lot. But the difference in my quality of life is amazing. I can manage my symptoms. I still have limitations but I can work with them.

I know tricks to keep myself getting too bad. It still happens but a third of what it was. I am no longer overdoing it everyday.

In sovitiies eyes, I failed. But, my kids are so happy, this experience has is making them more empathetic and understanding, they have more knowledge about the differences of people around us and how that is normal, that not everybody fits into this box.

Your symptoms can very well level out once you find the right things that work for you. You may evwn be able to go back to work. If you can't, if you life really has changed in profound ways because of MS, you are not alone. Ive searched a few groups and found many people like me, whose symptoms did not go away and are very easily triggered. Search and Ask on here questions on how to manage certain symptoms. Message me anytime. Once we throw the picture of what we imagine our life to be, out of our heads, we can get back to enjoying what we have focus on what you can do. Twist your perspective on things you cant and maybe you can find a different way to get the job done. The first year is the hardest. Keep your doctor informed. Sometimws we try a few sets before our body calms down. Don't give up hope.

/r/MultipleSclerosis Thread