Sometimes things come up just when you need to see them and today is one of those days. This morning I read a blog post from one of my favourite bloggers (Meg from bbhwithms) that really kicked me in the butt. I like to think I am doing well managing my MS, but I now realize that I can be doing so much better if I wasn’t so darn lazy. Sure, I keep a positive outlook and I still believe that is a big part of winning the battle but there is so much more that I can be doing. Sure, I watch what I eat (kind of) and sure, I try to throw in some physical activity (kind of) and sure, I take my supplements and toy with my use of medical cannabis (kind of) do you sense a pattern here? Well, I do and it became painfully clear while reading Megs post and today it is just what I needed to hear. Meg and I are not quite at the same place with our disease management but I want to be where Meg is. I want to toss all my medications out the door and rely only on natural therapies, but I’m not there……YET. If you need a loving kick in the pants, you may just find it here. Meg is a talented writer, who just published her very first book titled “Segway into my New Life” available on Amazon but here is the link to the post I read this morning, I know you will enjoy it as much as I did: https://www.everydayhealth.com/columns/my-health-story/how-my-ms-self-care-routine-become-full-time-job/?eh_uid=78511837&slot=0&xid=nl_EHNLms_2019-01-19_15746035&utm_source=Newsletters&utm_content=2019-01-19&utm_campaign=
When I went off on Long Term Disability 3 years ago, my doctor told me that my full time job needed to be looking after my health and I have felt that I was doing pretty well at that and yes, I have done pretty well, but I realize that I am not taking it seriously enough and I have a lot of life to live that requires me to be at my best. I make excuses to not go for a walk if I’m not feeling well, I make excuses to not take my supplements and my cannabis if I’m tired of taking pills (with my prescriptions, supplements and cannabis, I take approximately 30 pills a day and sometimes I’m just over it), I make excuses to eat unhealthy if I’m not feeling well enough to make the food that will actually fuel my body. Bottom line, I am failing myself.
The reality is that I have a long ways to go and my MS still consumes my thoughts at times. If I’m being honest, I don’t feel 100% and you wanna know why? Because I am not doing everything I can to feel that way. Just like Meg, I know that when I let down my guard, my MS takes that as a sign that I am not the priority, MS is and it does it’s best to take over. It sucks when that happens.
I know that when I am doing it all seriously, I feel like I can take on the world which then allows me to let my guard down because I think I’ve done it, I have done enough to take back my own life. It doesn’t happen overnight, but my MS slowly sneaks back in. It’s a vicious circle. It would be so much easier if I immediately felt the effects of my laziness but that’s not how my disease works. It’s sneaky like that and before I know it, I am back to having more days where my MS symptoms seems to be in control rather than me being in control of them. Symptoms like,
- Anxiety and problems multi tasking especially when there is a lot of noise and things going on
- Brain fog so severe that I sometimes worry I am having a stroke which in turn causes me more anxiety
- Muscle spasticity sometimes to the point that it wakes me up out of a dead sleep
- Zapping neuropathic pain that takes my breath away or makes me drop what I might be holding at the time
- Balance problems that cause issues even when going from a sitting to a standing position and heaven forbid I try to turn around without holding something for support
I am not silly enough to think that if I do everything right, I will not have any more MS symptoms, but I do know that if I’m doing better at taking control over my health choices, and make the management of my disease a priority, I will change the direction of the course of my disease and be that much closer to winning the battle. This is one battle that I am not willing to lose if at all possible. I say if Meg can do it, I can do it. Thanks Meg for the kick in the pants that I needed!
I am sitting here in beautiful Arizona for 2 -3 months of rest and relaxation so making these changes should be easy don’t you think? However, I know there will be challenges and one of the biggest ones I think I will face is the extension of my time between my Tysabri infusions while I am gone. I am going to try extending what usually is every 4 weeks to every 6 weeks for the next couple of infusions mainly because it is too expensive to have them done out of the country, so I will be flying home to have it done. Up until now, many months (not always) I am dragging my ass the week leading up to my infusion, my legs are heavier than normal, my muscle spasms become worse, my brain is foggier than normal and I am beyond exhausted. My hope is with the warm dry weather (I respond better to mild to warm weather which is contrary to other MS’ers who struggle in the warm weather) and no place to have to be (which is proving difficult for me to adjust to) along with no stress, I will be able to handle the prolonged space between infusions. Wish me luck as I tackle this new approach to taking back my life from my Multiple Sclerosis. I will be sure to keep you posted!
What are some tried and true strategies you hav to keep yourself on the straight and narrow while trying to manage your chronic illness and live your best life??