I thought I could write about this, but at the moment I'm having my doubts. I would love to be able to handle having Multiple Sclerosis with grace, and to set some sort of example for how to deal successfully with a chronic illness, but it's not easy and at present it seems beyond me.
I also thought I would feel some sort of kinship in finding others with MS or with the National or Arizona chapter of the MS Society, but it's just a granfalloon. When I'm around anything messy (short for M.S.-sy), I start thinking about myself as a sick person. Then I start feeling sick, then I get sad, and then I feel isolated. This goes for doctors, neurologists, therapists and the constant stream of people on the other end of the phone, from my insurance company to doctor's receptionists to home nurses to drug company support reps to mail order pharmacy liasons.
I'm also done telling people I have MS unless it's more uncomfortable to not tell them. I feel like once people know they either treat me with kid gloves or give me the sad eyes that telegraph how sorry they feel for me. It's a bad situation for both parties, and I just don't need it. There is absolutely no comfort in knowing someone feels sorry for you.
With all this in mind, I'm letting you know that this will be the last post for awhile as I try to step away from feeling like I have an illness. As the "Avoidance" post below points out, I just do better trying to get on with things. Just writing this post makes me focus too much on the disease and what might happen, which distracts me from what I can do in the present for myself and my family.
Getting on with things means staying true to my strategy for handling the disease, which has meant some significant changes to my life and the life of my family. I've been a vegetarian for about a year, but I'm now a vegan who eats fish. Of all the sites, books and philosophies on living with Multiple Sclerosis, I feel George Jelinek's Overcoming Multiple Sclerosis site and book are the best fit. He's a doctor who has been living relapse-free with MS for over 10 years while following an adapted version of the diet for MS pioneered by Roy Swank, who studied 500 MS patient's dietary habits over a 34 year period. Both Swank and Jelinek (as well as others studying MS) have found that changes in diet can have a dramatic effect on overall health for those afflicted, including stopping or delaying the progression to disability often associated with MS. Dairy is a big no, and shifting the balance of fats from animal to vegetable is paramount to maintaining health and reducing inflammation.
Using their suggestions as well as my own experience, here's how I'm managing my MS:
Diet: (reprinted from overcomingmultiplesclerosis.org)
-A plant-based wholefood diet plus seafood, with no saturated fat, as far as is practical
-Omega-3 fatty acid supplements (these make up about 30% of the composition of fish oil and 60% of flaxseed oil): 20g (20mls or 20 capsules) a day (of flaxseed oil or fish oil, or the equivalent amount if fish, concentrating on fish or fish oil when beginning the diet)
-Vitamin D3 supplement of at least 5000IU daily
In short, I'm doing what I can, when I can. I'm lifting weights, doing Pilates, and swimming (each 2-4 times per week), and I'm running as much as I can. I'm also trying to integrate as much neuro-musclular retraining as I can muster. Trail running is good (though a little dangerous in my state), box steps, strides, one-legged hops, and whatever challenges me to put my foot where I want it to go rather than where it lands on its own.
By far the hardest. Simply put, I have to mind my efforts in a way that builds me up rather than overtaxing myself. It's embarrassing to have to rest when I'd rather be working out, and to stay in when I'd rather be going out. I've learned that when I push too hard, I pay. The numbness, anxiety, and all my symptoms get noticeably worse with fatigue, so I have to avoid it.
Still a sore spot, but I will hopefully be starting daily Copaxone injections next week. I've been waiting almost a month to get through the red tape and authorizations, but there is light at the end of the tunnel. I'm not thrilled about the meds, as they don't really help that much for many people, but I'm committed to doing all I can to get better and this seems to be a necessary part of the package.
This is where I'm at. It's a lot to take on, but I truly believe this plan of action will help me. Treat me like a healthy person, and hopefully I can play the part. There will be a day when I can push this to the back of my mind, when I don't think about it the second I put my foot on the floor as I get out of bed in the morning. I can take all the steps above without dwelling on them too much already, and I suspect with time it will get even easier. For now, this line of thinking is as graceful as I can get about this.
Thank you for reading, and you can always contact me from the email listed on my profile.