I’m in a bit of a quandary………I have a yearly MRI for my MS and I got the reminder call today for an appointment next week in Victoria.  Now Victoria is a beautiful place and I love to go there to spend a few days, but it is a 3-4 hour drive each way and the appointment is at 4.  Hmmmm, I know that they like to book the MRI wherever they can get in the quickest but it’s a long way to go for an hour and a half test.  Do I go? Because if I don’t go, it could likely be another 8 months to be rebooked for somewhere closer or do I wrangle someone to go with me to have the test so we have the results before I see my Neurologist in June?  I have had more MRI’s than I care to admit, (I’m going to estimate it at 25-30 over the course of my disease) and I’m fine with the procedure as I know it is necessary to see if my DMD (disease modifying drug) is working still or if a change needs to happen to keep the MS progressing as slowly as possible.  Ok, I’ve just talked myself into driving the 7-8 hours to have it done. Thanks for being my sounding board. My husband is probably going to read this and say wait what, you have to go to Victoria?  I think I may have forgotten to tell him, but I will blame it on my MS brain.

Looking back, I believe that my MS has been with me for longer than 30 years, rather than the 13 years that I have been officially diagnosed.  My neurologist believes that I likely had MS for 7 years prior to that due to the brain lesions that showed up on my first MRI. But, I remember back to before we had our children and I remember some sensory type things that had I known then what I know now, I would have started looking into what was going on with me, I guess ignorance was bliss. But maybe it is for the best that I didn’t have this diagnosis back then, because maybe my life wouldn’t have panned out the way it has if I had MS looming over all our decisions. If you had asked me 30 years ago if I was ready for a serious, degenerative illness to suddenly infiltrate and change my life forever, I would have laughed you right out the door.  Obviously not, after all, I had way too much to do, children to have, children to raise, fun to have, a successful marriage to build, how could I possibly fit in dealing with a chronic illness?  If I had been diagnosed that long ago, I may not have had 3 amazing children who light up my days, I may not have gone to college and had a long career doing what I loved to do, and I may not have had the supports in place to help guide me through this unpredictable disease, like I do now.

If you have just stumbled upon my blog, I went on Long Term Disability over 2 years ago and I am super excited to say that I have energy now that I haven’t had for over 15 years, maybe even longer!  Can you believe that?  I still struggle with my MS symptoms daily, but I now have the energy to deal with them effectively rather than letting my MS deal with me.

Things really started to unravel (health wise) after I had a serious car accident about 8 months before my MS diagnosis. This accident should have been fatal for me, but for some reason the big guy had a different plan and I am forever grateful for that. I walked away from that accident in tact and much better than my brand-new Volkswagen Jetta, the one with only 400 km on it, which was a total write off.  After that day, my body slowly started to fail me, and I tell you, I did not have time for that.  I was in an extremely busy job, had 3 young children, a newly built house, soccer practice, school functions, etc. The fact that my body had a different idea was overwhelming for me, someone who thought she knew where her life was heading.  Just like that, I didn’t. What I realize now, is that I had no idea where my life was heading, but I do now. I often think back to that time in my life and wonder if I truly appreciated my life as it was when I laid my head to rest at the end of the day and I don’t think I did.

Through the years, one thing I have learned is that living with a disability, or with any challenges that come our way, there is an opportunity to make better choices and to change your attitude for the better.  Up until I no longer could maintain my work life, I just pretended that I was ok, because that was much easier than digging deep and making the choices I would have to eventually make, like going on disease modifying medications, eating better, exercising more, working less or not at all, and on and on. I’m not gonna lie, it was tough for me when my doctors said I needed to stop working if I expected to have any quality of life, I was in no mood to be happy about it. I found myself in a struggle with my normally positive self.  It took me a year to stop feeling like I was giving up, but I gave myself some time and I eventually came to a point where I could choose to be grateful for what I do have, or I could continue to focus on what I no longer could do or have.  It was a no brainer to me.

When MS was thrown into my life, I refused to believe that I had anything seriously wrong with me, until I couldn’t ignore it anymore. MS has a funny way of making you swallow a good ole dose of reality. I now realize that it wasn’t so much the disease that rocked my life but my inability to recognize that life had changed and there was not a damn thing I could do about it. That right there is a very humbling realization. More than 13 years later, I am calm, accepting, hopeful and energized.  I am much more flexible in my approach to life, unlike my body which is often in pain, clumsy, fatigued and doing some strange things. I am hopeful – hopeful for relief, hopeful that I will continue to have the courage to live my life fully.  Hopeful for continued love & kindness from the people I love. I am hopeful that I can continue to walk around the block without too much assistance, hopeful for a cure, I hope for the courage to continue living this life fully.  Hope is a small 4 letter word, yet it is embodying everything I feel and need.  I believe in hope and I am hopeful that it believes in me too.  I still have a life to live well.  You know, some weeks I feel fine, and other weeks are filled with pain, frustration and doubts. You really can’t predict its course from day to day. So, like MS, what I can do daily varies as well, but I now have the energy to be more intentional with what I do from day to day. This is important to me because it reinforces that MS isn’t an easy disease, but it also reinforces that I’m not easy to beat.  Game on!  These days I give myself permission to rest. I’ll diffuse my essential oils, grab a comfy blanket, plant myself in a sunny chair and give my body the time it needs to rest. By creating space in my life for this rest, my body is recovering much quicker than it did when I was too busy being busy. It’s almost like my body is starting to trust me again. Next month is my 13^th anniversary of being diagnosed with Multiple Sclerosis and in those 13 years, I have realized that I am the one who determines whether I let this crappy disease, or my attitude have the starring role in my play.

Along with resting, being kinder to myself, taming my internal dialogue and being diligent with my supplements and medications (including learning about and using medical cannabis), I am eating healthier.  In fact, I have started the KETO diet and now that my body is no longer in shock I have lost 10 pounds!! Woot, Woot! It’s not a lot, but it’s a start and I am finding the diet much easier to follow the longer I am on it.  I am totally committed to losing some weight and exercising more but one thing I have been missing is something sweet to much on (and popcorn – I really miss popcorn) so I signed up for an amazing program that gives you support in a variety of ways.  For a small monthly fee, you have the ability to ask questions, there are weekly webinars, educational videos and materials, and my favorite – RECIPES! I found this website through my favorite research site (a.k.a. Pinterest) while I was looking for something sweet that is Keto friendly because EVERY SINGLE THING we like, is loaded with CARBS.  No wonder I have an extra 50 pounds of unwanted weight hanging on!  Anyway, below is the website and the recipe that almost saved my life, not really, but it saved me from cheating on my friend KETO and I really don’t want to do that!  Stay tuned for updates on my weight loss journey!

https://keto-adapted.com  

Until next time!

Raegan