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Uncertainty and Anxiety with MS

For anyone who doesn’t already know, (and be thankful if you haven’t been forced to learn, haha!) MS is a very unpredictable disease.  It looks different for everyone, so there’s no way to know how the future will unfold.  I happen to have a fairly mild form of it – for now, that is.  I’ll go through a few years or so where I feel great, and then will have a flare up as if to remind me not to get too cocky about feeling so good.  When I do have a flare up, it’s usually pretty intense and may last several months.  Needless to say, this pattern can cause quite a bit of uncertainty, anxiety, and fear – if I allow myself to think too much about the possibilities!

It seems as if every time I search for something MS-related online, or flip through an MS Society magazine, all I get are visions of canes, wheelchairs and bladder control problems.  If I search MS groups and message boards online I inevitably find person after person voicing their health struggles and woes.  And these people have legit problems – I have great compassion for them! However, I often have to remind myself that (in general) the ones posting these tragic stories are often the worst off.  They find themselves in a dark place and they get online to reach out, share their stories, and search for hope.  But for those of us who are actually doing pretty well, it can paint a  frightening and hopeless picture of the future.

After the birth of our third child (6 years ago), I had a flare up that was so bad it basically halted my life.  I could do extremely little to help my kids, husband, or self.  I basically stayed in our bedroom for weeks having spasms while my family and friends cared for my children.  I’ll admit – I did resist medical treatment for a few weeks in order to nurse my newborn; if I had sought treatment sooner, it surely wouldn’t have been quite so dramatic.  And yes, I have been known to be stubborn once or twice. (Insert my husband’s laughter here.)

The reason I mention that specific flare up is because, although I’ve never been professionally diagnosed, I’m almost certain I have some level of PTSD because of it.  Obviously, there are many people who have been through worse situations. I almost hate to use the term “PTSD” because I don’t want to take away from their stories – war, abuse,  etc.  But honestly, those months were intensely painful for me, as well as crazy emotional since I wasn’t able to care for my newborn or other children.

That being said, each time I feel the slightest twinge in my leg that reminds me of that time, anxiety floods my mind and body.  My mind immediately goes to the worst case scenario and I start planning ways for my family to do life without my participation.  Not to brag or anything, but as a homeschool mom of three, my involvement is fairly crucial to our days functioning smoothly!  CBD oil helps me a lot, but it’s not enough to work on a deeper, spiritual level.

So then I have a choice.  Do I let myself get sucked down the trail of doom in my mind?  Or do I deliberately choose to speak truth and hope into my life?  Truthfully, it’s a mind battle between the two, but so far hope and truth have always won out in the end.  But only with Jesus’ help.  Honestly, oftentimes in those situations my first and most prominent prayer is simply: “Jesus.”  So much meaning behind one name.  And since God and I are tight, I rest easy knowing that he knows what I mean.  I don’t say it as some do, out of frustration.  When my prayer is simply “Jesus” what I’m really saying is:

“Help me, God.  I don’t have the strength for this.  I’m too tired.  I’m  scared. I need you to carry this and take it away.  I need you to be by my side as I go through whatever I’m about to go through. I need your peace so I’m not terrified and defeated.”

And then the anxiety eases.  And maybe it comes back five, twenty, or forty five minutes later, and I whisper another “Jesus.”  And it eases again.  Lather, rinse, repeat indefinitely.

If I don’t have the confidence that comes with knowing Jesus is always with me no matter what, loving me and helping me as I go, then I will always be anxious and scared when a flare up (or any other stressful life circumstance) occurs.  But since I do have this confidence, I know that I will ultimately get to a point where I say, “Whatever happens, God will be with me to help me and provide for my needs and my family’s needs. He always has and he always will.” And it’s after I’ve gotten to this point where I can truly move on with my day and live without fear for the future.  It’s at this point I can live the life I have and not the life I fear I’ll have one day.

Multiple Sclerosis Trial and Error

I was diagnosed with MS in 2005…one short year after getting married.  Obviously, our world was rocked. Thankfully, my getting diagnosed wasn’t a drawn out ordeal like it often can be. One day I woke up with double vision and (thanks to my awesome hubby for not taking no for an answer on the phone with healthcare providers), a few days later I had a diagnosis.

The first two questions out of my mouth to the neurologist were: “Am I going to die from this?” and “Can I still have children?” The short answers were no and yes. I was satisfied. Still freaked out for sure, but satisfied that there was hope.

I immediately began taking Rebif, which my neurologist said was the the best option. One year later, after experiencing tons of random symptoms and feeling generally off, my mom had had enough. I trusted what the doctor told us (that Rebif was the best) so I figured we had no other better options.  My naïvety at that time is almost amusing now! Thankfully, and unbeknownst to me, my mom and aunt discovered and researched something called Low Dose Naltrexone (LDN) while I was busy having drop-me-to-the-floor-in-pain spasms.

I bought in to LDN immediately, and after a search for a doctor who would be willing to prescribe it (since it’s not considered an official MS treatment), I began my journey with LDN. Fast forward to 2018 and I’m still happily taking it. LDN has given me my life back.

It seemed too good to be true. I didn’t change a thing except for stopping Rebif and beginning LDN. I ate tons of junk food back then, not even thinking about what I was putting into my body. I’m appalled when I think back. But I took it and felt great through two pregnancies and nursing two babies. Pregnancy three came around and I still felt great until I got a terrible sinus infection right when baby was due. Natural treatments weren’t cutting it – onto antibiotics I went (which I hated). Soon healthy baby #3 came into our lives and I went downhill fast. I’m talking several months of debilitating spasms. There were days I couldn’t change position at all without having a spasm. Tricky business when you’re supposed to be parenting your 4 year old, 2 year old, and newborn. We couldn’t have gotten through that time without amazing family and friends stepping up and seeing us through. Seriously, they (and my husband) deserve awards.

And that was the end of my LDN bubble. Apparently it wasn’t a magic pill after all. But did it still work? Yes. There just happened to be a perfect storm of poor health/hormone shifts/sleep deprivation/stress, and LDN wasn’t enough.  So now what??

Food as medicine. Who knew that what you put into your body affected how your body would feel/act? Somehow I had missed that memo. Or maybe I was in denial. Either way, it wasn’t long before I was having food allergy testing done and being very deliberate about what I ate and drank. Turns out I have a handful of food sensitivities. I feel best when I eat mainly vegetables, fruits, nuts, and meat. I did the Whole30 and I felt better than I ever had in my life. Confident in my overall health, even. I’m not as strict now, but at least now I know how to eat right for my personal optimal health.

It can be- no, it IS- stressful and overwhelming trying to eat perfectly All. The. Time.  Even when you know the benefits. So I do my best and hope for grace. Last November I started feeling the weird spasms-are-on-their-way feeling in my leg on and off. After an appropriate amount of time to freak out in my head and worry about the future, I got down to business. I perfected my diet to the best of my ability and took all the extra supplements my awesome naturopath recommended. It never got bad (thank you Lord!), but it did take awhile to go away. Too long, in my opinion. But what other option did I have?

CBD oil. This is my new find, my new hope. I started taking CBD about six weeks ago and have for sure noticed a difference. The thing about MS is that you can never be really, truly sure what is helping since symptoms come and go as they please. But if nothing else, it has helped with the anxiety that accompanies symptoms. The anxiety can get so bad it actually triggers more symptoms, so I can say with confidence that it has improved/disappeared. Time will tell what other benefits it offers.

With MS, there are always new treatments being discovered. Hopefully in the near future there will even be a cure.  But for now, I’m taking what I can get. Ultimately it’s my faith in a good, gracious God that gets me through. Having him by my side in the pain and in the good is better than both LDN and CBD. I’m thankful he led me to them, but I’m even more thankful to have him with me each step of the way…through all the years of trial and error and through the (no doubt) many more to come.