Last reply 3 weeks ago
Been with Shift.MS for a year

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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stumbler
3 months ago

@doug_graham , a great testimonial. Happy 1st anniversary.


doug_graham
3 months ago

@stumbler
Thanks this year was a whirlwind ride. Looking back I really didn’t have a chance to focus on what MS is and has done to me. Sounds like I need to stay busy


lisa_morghan
3 months ago

Hi I’m Lisa well being positive in todays world and with MS is great as long as your paying attention to any change “physical ” you can write document its for my self my “Mother / Sister now myself it really important for me to first go into “Accepting” I have grandchildren and great grandchildren so ya I’m a researcher I “Google ” any questions about side effects ect….. Both my Mother sister went into denial I watched them “Act” it doesnt work ¿¿¿ seriously you sound great keep on keeping on…. bless you dear 👍🤲🤟


doug_graham
3 months ago

@lisa_morghan I’m retired military, US Navy, and the “man” of the house. I wasn’t ready to accept or discuss that I had a permanent disability. Surrendering my man card accepting it and discussing it has saved my life. I’m fortunate I am blessed to being married, nearly 32 years, to an amazing woman who has watched me go from career military fitness nut to a > 60 year old man with SPMS. Keeping a short diary of medical changes positive and negative is important for the treatments and understanding MS. I actually write down weather conditions in my remarks. Heat and Cold shut me down. I always write down plans for today and success of last plans I made. Thank you for your blessings. I pray and add to the church prayer list for strength to those dealing with a lifetime rehabilitating disease.


kathytillou
3 months ago

I appreciate you sharing this @doug_graham — your words resonate! I recently have embraced the fact I have MS — by embraced, I mean I am finally engaging with the MS community (joined shift.ms!) and love the community. It only took me 20 years to get here 🙂 I was too busy pushing MS into the background all that time. **although I am just now joining the Tribe, I have been on DMDs and use nutrition to supplement my healing.
I 100% agree with taking ownership, being as educated as possible, finding your Tribe and finding your source of strength!
I feel I’ve just started a new, exciting chapter in this wonderful life!


beshrp1
3 months ago

@doug_graham
Oh wow!! I just had like three epiphanies! Thanks so much for sharing! It’s like you read my mail with some of what you spoke! Be well, take care and thanks again!!! 🤔🤗💡


doug_graham
4 weeks ago

@beshrp1
I apologize for not checking in on shift.ms. It shouldn’t have taken me 2 months to respond to your comments. I hope that what ever I said still resonates with you and your MS. I have been working my self every chance that I’m able because the heat is about to hit us hard. I live in Texas. Temp usually averages high 90’s & some time we will have long durations of > 100. I know how MS and I respond to high temperatures. Being stuck inside with COVID-19 “stay inside orders” and trying to get projects done is an interesting challenge. We bought a home last June & I’ve been preparing it for summer. I am a HAM Radio operator turning the “pool house” into a ham shack is a priority. I want to talk with people around the world. COVID -19 is scary, but I’m starting to see communities and our country come together in this battle. It doesn’t discriminate between race, religion, age, or ethnicity. We are all humans with a common enemy. I would like to see how others are doing with their battle. I have to sort out a truth not from News, Social Media and Government orders. Sorry I tend to get a bit long winded. I’m getting about even on projects so I’ll have time to respond or post. Take care and thanks for your comments. Doug


beshrp1
3 weeks ago

@doug_graham- wow! Excited for your vision, plans, and i truly know you’ll help tons of people! Thanks for your post and reply! Look forward to everything, I ❤️ your “long- winded”(teasing 😂😊) testimony!! All the very best to you and yours- stay strong, and thankful!!


doug_graham
3 weeks ago

@beshrp1
See I’m checking more often. My wife keeps pushing me to slow down on projects and stay involved on the MS sites. Her & my son tell me I show a positive energy after posting. It’s also how all of us began to share how MS effects us all. I accepted your friendship and looking forward to sharing our moments. I just finished putting up 1 antenna and I have 1 more to go. I’m long winded because I’m medically retired, most conversations are between myself and our 3 dogs. My wife is at home teleworking as a trial attorney and my son is finishing his freshman year on line at home.
Locked inside with the stay at home rules has us all a bit crazy. Thanks for asking for friendship. Take care Doug


beshrp1
3 weeks ago

@doug_graham- you’d be an asset and leader in any environment, despite any <flaws> difficulties!! 😊thanks for being open!! We all have the power to influence each other and build each other up. Chin up and head high, my friend!😉❤️

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