Thirty years of MS. Eight years of LDN (low dose naltrexone — see www.lowdosenaltrexone.org) and I’m still improving. I’ll be 65 this year . . . doing my best to steal back those middle years of my life I lost, but AGE is getting me from the other side as well. Arthritis in my knees, hips, wrists, and fingers from all the years of falling down. (Tumeric helps the pain and inflammation tremendously.) Vision problems from vitreous detachments (not sight-threatening–just irritating–“floaters” and flashing lights.) Numb feet that nobody can diagnose. The neurologist, of course, wants to hang the diagnosis on MS. After thirty years, I know what an MS exacerbation feels like. If it was MS, I would not be able to garden when it is 90 degrees out. Those feet and ankles would be so weak, I’d be sitting in the dirt. No, not diabetes. Blood sugar is normal. Cholesterol, better than normal. I don’t take any of the drugs with “serious warnings,” the ones that make you question whether the drug is worse than the disease.
Diet is extremely important. On one side, LDN can reduce inflammation. But, many foods are inflammatory . . . and a drug is not going to do its best when you’re using it to put the brakes on a disease process and fueling the “inflammation engine” by eating bad food, especially refined sugar. The benefit of a well-balanced diet extends beyond its benefit in helping my autoimmune condition. I believe it has really helped in significantly controlling the onset of a lot of age-related conditions, diseases I am glad are that are not in my body’s vocabulary–but ARE in my family history on both sides: heart disease, diabetes, cancer . . .
When I had active MS, depression was a horrible problem. People told me I was depressed because I HAD MS, that it was about what I couldn’t do or couldn’t do well . . . and the depressing, long-range prognosis. I argued for years that, no, I was not depressed about HAVING MS (although there would be every reason in the world to be depressed), the MS CAUSED the depression . . . that is was like this horrible fist pressing down on my brain, and it was a FORCE that could not be resisted. Kind of like what one of the first doctors I saw the first time my feet went numb told me–“You’re having a hysterical reaction;” i.e., “It’s all in your head.”
Hysterical reaction? What?
“You just had a baby six months ago. You’re working too hard.”
Well, yes. I had had a difficult pregnancy, with premature labor where I almost lost my son, and almost lost him again in grief when my cousin was killed by a drunk driver. I was confined to bed and saw no one except my husband for months. My son’s birth was extremely physically damaging. He nursed every two hours day and night., so I was exhausted. Then I got a flu that wouldn’t go away. And somehow MS crept into my life.
What did the doctor tell me? “You need to get your husband to help out more.” Uh huh. Small chance of that.
I wish I had known about LDN and started when I was first diagnosed, or at least when Dr. Bahari discovered that it worked. First symptoms–1977. Diagnosis–1978. Dr. Bahari’s research–1983. MS cost me a marriage, a career, and a lot of years of joy in raising my children because, as a single mom, by the time I worked full time, cooked meals, and did the housework, there wasn’t much left of me to give my kids. At times, I was too ill to do anything after work. I’d get home and go to bed. I turned some of the chores over to the kids, but responsibility for and actually completing the work are two different things, especially with a mom too exhausted to argue. Probably, one of the best things I did was to rely on logical consequences. If they wanted clean clothes, they were responsible for doing their own laundry. If they wanted to eat, cook. My son decided one day, at age nine, that he wanted cake. I handed him a recipe book . . . and he succeeded the very first time. Today, he’s quite a good cook . . . and proud of it.
I think the fear of what was happening to their mom when they were kids has affected them to this day. Having family close by provided reassurance that we weren’t completely alone. By the time the kids had both left home for college in 1998, I was getting pretty bad. By the time I became “unemployable” in 2001, I controlled the finances by turning off the heat and air conditioning. I was glad the kids were not affected.
When I first started LDN in 2007, I felt “shaky,” like the ground beneath me was going to give way and I would fall. What’s surprising about that? I had spent the past 30 years falling. I was used to it. And, yes. I still continued to fall . . . physically. But those falls became fewer and farther between . . . and it was no longer falling because the disease was getting worse. It was falling because I was trying so hard to push the limits to get better. (But, don’t push TOO hard. LDN can only do so much and you have to give your body a chance to heal.) It’s like being an athlete building up to a triathlon. Push too hard, you get injured and have to ease off.
Now for a side note. Need to build up your quads? This works if you are at least still somewhat mobile, Start by standing with your calves against your bed mattress. Then sit down and stand back up repeatedly as many times as are comfortable and then try to do one more.. Still unsteady? Can’t quite make it up even one time? Have someone put a chair study chair about a foot in front of you and hold on. If you can’t quite make it up, you fall on the bed . . . no damage done. And you can use the bounce of the bed to help you until you get stronger and are finally able to do this slowly and with control. Great exercise to help you do one of the things you will do frequently . . . getting up out of a chair. I discovered I needed this exercise the day I was in a public restroom (non-handicapped), and did not have the strength to get off the toilet seat. One other tip that may help, especially if there are surfaces you really don’t want to touch. If you are down low, say, in a squat, you may be able to place your hands on top of your own feet and push off from there. Or, from a sitting position, place your hands toward the backs of your calves, lean slightly forward, lift your bottom, and use your arms, levering off your calves, to stand.
At one point, after my kids were adults, my son and my brother were talking about “what they were going to do” when I was no longer able to take care of myself. I have gone from being virtually housebound in 2007 to now looking after my ninety-year-old parents when they need it. I am grateful every day for having the opportunity to “give back” to them for all the years they spent helping me raise my kids (I moved from Indiana to Florida after my divorce for family support). I am grateful I have strength to hug my grandkids and teach them to do art projects. I am grateful for even being able to see them, to talk with them in a way that they can understand and not having them question why “grandma talks funny.” I am grateful that I can work in the garden, sew, knit, crochet, paint, clean my own house, and cook my own meals. I am glad I can go to a store and actually BUY what I need instead of driving home after I get there because I am too tired to get out of the car. Simple things, yes. But all things MS, at one time or another, took away from me. And LDN gave me back all these things . . . and me.
You are a fighter..motivational …..glad to have a coach like you.