It appears that I joined Shift.MS just over a year ago in January. I was asked to reflect on how my year has been since getting involved with the group. I spend my free time on various MS sites I find on the internet.
My neurologist had suggested I find others with MS and be there to listen or discuss my MS with those in need of support or an ear for them to open up to about MS. She treats a lot of us with MS at the VA Hospital in Dallas, TX. She is always surprised by the detail of my personal health records on my condition that I provide her at my exams. Also, that I haven’t let MS take me down emotionally and have been living with it for almost 30 years. I was excited about the interview and selection as a mentor on Shift.MS. I have yet to be assigned a person to work. I do stay in touch with multiple MS sites for open discussion for those in need to talk, vent, question…
This past year has been extremely demanding. My MS transitioned from RRMS to SPMS at the end of 2018. I know that there are parts of my body and mind that no longer remit. I’m not sure at what point they determined I went to SPMS and how far will it go from here. With all that said the MS has not put the demands on me. I truly believe the statement that I have MS it doesn’t have me. I try to daily wake and focus on a positive in my life get up, no matter how difficult, keep that thought in my mind throughout the day look for my what I will think about tomorrow.
My difficulties have been in personal life changes. Our son graduated High School and started his freshman year in college, we sold our 2-story home and found a single-story home centrally located, and I am medically retired. I kept so busy making sure it all worked out. I have aged and I’m financially not as secure as I was while I had a job and I have MS. Everything I accomplished this past year would have been difficult with or without MS.
I have MS Fatigue and I have learned coping mechanisms for it, and they have modified my medication to assist with the Fatigue. I have a strong family, social, and religious support group to lean when I need it. I also get a lot out of the discussions I have had on MS sites. I believe my greatest accomplishment is becoming open about my MS.
It is an invisible disease and I spent 20 + years hiding it and getting though the day with it alone. I started reading some of the posts from others to my wife. We started having open discussions about MS. It affected her life and she didn’t want to state how to me. We are approaching our 32nd anniversary. She knew when things were difficult on me and it hurt her that we weren’t talking about it.
I believe open acknowledging my MS has lifted a great burden from myself, family and friends. Yes, some say I see your using a cane but you look really good so it doesn’t seem like you have anything that wrong with you. I tend to avoid those kind of people. Do they tell someone that has cancer they can’t see the tumors so their doing really well with it?
Sorry, I have rambled on and started to vent. I tell everyone in posts or comments that it is their MS. We all have it and are treated for it. It and the treatments are completely different for each of us. Use the sites to educate yourself on MS and treatment plans. Don’t let someone’s comments determine your treatment plan or what is going to happen to you. I keep an as needed running diary of good and bad days. I use this to communicate with my wife, son and doctor of changes in my physical and mental state.
I also believe it is extremely important to find an inner strength to get you through life. I have a strong faith in God, there are some have it in music, audio books… We all have something that gives us strength, find yours and start to live your life. Accept that you have MS don’t let it have you is more than a slogan. It is a way of life.
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