We interrupt the regular bookish nonsense for a brief post on MS Awareness Week.
As you may know, my beloved Bookman was diagnosed with Multiple Sclerosis in 2005. I’ve been posting about MS Awareness week since 2006. This year I have been hemming and hawing and almost hawed myself out of posting about it not because things have been bad, far from it, but because of fatigue.
Nine years with MS and Bookman is doing really well. He has no new symptoms and things go on in a not-getting-worse kind of way. There are good days and bad days, but having settled into a sort of normalcy of living with a chronic illness one gets used to it but also tired of it. Tired of thinking about it, tired of talking about it, tired of hearing about it, tired of cheerleading and fundraisers and awareness weeks. And certainly one gets tired of living with it.
And that’s why I finally decided to post for Awareness Week. Because while Bookman isn’t getting worse, he also is not getting better. There is still no cure. Scientists still don’t know what causes MS. There have been some interesting discoveries over the past year that might eventually lead to treatment therapies that could, if not cure the disease, at least repair some of the neurological damage and keep it from getting worse. The time it takes for these things to develop means it could be years or a decade or more and for people who have an unpredictable chronic disease that is a really long time. My being tired of all of it is nothing compared to how Bookman and millions of others who actually have MS feel.
Bookman has benefited from one development over the past year. Prior to spring of 2013 there were no oral MS medications and Bookman had to give himself a daily injection. Now there are not one, but two oral medications. Bookman started taking one of them in May and so far so good. No major side effects and since he hasn’t had any relapses we assume the medication is working as well as his injectable medication did but it will be awhile before we know for sure. It was a bit disconcerting when he first started the oral medication to hear is neurologist say, “well we’ll know in a few years whether or not it works.” We’ll know it is working if he doesn’t have a relapse and he has a couple MRIs that come back showing no new myelin damage. In the meantime my skinny husband is grateful he no longer needs my help to squeeze up some imaginary fat on the back of his arms for an injection. And we both happily watch the years of injection site scars slowly fade from his arms, hips, legs and stomach.
We remain grateful for health insurance and his good general health. But not a day goes by that we don’t both look at our framed broadside of Jane Kenyon’s poem and know that one day it might be otherwise.
I really hope that the medicine Mr. Bookman is on continues to work well for him. What a relief it must be to not have to do injections!
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Iliana, thanks! It is a relief to not have to do injections. Bookman was practically giddy about it the first few weeks he began taking a pill instead.
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I’m glad that the oral meds have made things a little easier. We have a friend who was recently diagnosed, so the Awareness Week is timely for us. I love Jane Kenyon’s poem.
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Jenclair, thanks! Sorry to hear about your friend. I hope she is doing okay!
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My sister is still giving herself the injections… I’ll have to ask her about the oral medications. Like Bookman, things have been status quo for her this year, and I suppose that’s a good thing.
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lakesidemusing, glad to hear your sister has had a stable year! I hope if she talks to her neurologist about oral meds she can take them and they work for her!
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I’ll think twice before i complain about a new ache, pain, or sniffle. Bookman, best wishes always. With luck (and funding) researchers will find a cure. At least that is my prayer. Stef, hang in there.
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Grad, thanks for you kind words! With luck in the next few years a cure will be found. We are ever hopeful!
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And again today. I am touched again by what you write here. So beautiful you take the time and place every year. I so very well understand the fatigue and the happiness about new medicine and scars fading. And the gratitude.
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Dear Cath thank you. I do know you understand all too well.
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Hearing about your Bookman always helps put things in perspective and makes me realize how much I take for granted! Although I am sad to have to have this lesson in this way, it’s good that you share yours and his experiences every year. I’m glad things are at least not worse but I will remain hopeful, too, that they can someday eventually be better! Glad to hear that he at least doesn’t have to do injections!
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Danielle, thanks for your good words! Not having to do injections every day seems like such a small thing but it has been a huge relief for Bookman.
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Oh how I understand about the being tired of it factor. You do get used to living with a chronic illness on one level but on another there is never a day when you don’t wish you could go back to when your life wasn’t organised around its demands. All my good wishes to you both and I hope that this time next year the news is as stable as it has been this time.
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Alex, oh yes put it exactly right. Thanks for the good wishes!
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That is a wonderful poem, especially for this time of year when some of us get tired of everything.
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Jeanne, I love that Jane Kenyon poem. It is a good reminder for so many things.
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My m-i-l had MS and I so understand that feeling of being tired of it all, then everything revolved around her illness and there were no medications to help at all. I do hope that the new medication is everything that you could wish it to be.
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pining, sorry to hear there were no medications to help your m-i-l, I can imagine how hard it must have been. Thank you for the good wishes.
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Thank you very much for posting this.
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Much love and hugs to you both… I do know it can be so tiring in so many ways, and you are both such admirable people to live with it so graciously and hopefully! And, I’m so glad he is stable! Crossing fingers that it continues so… forever!
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wherethereisjoy, thanks Daph, you are such a sweetie!
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All the best to Bookman, and you as well since you are also living with it together. Thanks for this informative post, Stefanie.
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Arti, and thank you for your kind words!
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Oh, what a blessed relief that must be … Oral meds rather than injections, and it’s great to hear that all indications are that it’s effective. When you have a chronic condition any little win feels huge, doesn’t it. Meanwhile, I totally understand about the tiredness of living with something, the sense that even when it’s under control it rules your life because it’s implicated in almost every decision you make. Exhausting … So good for you for thinking that through, and posting, and sharing those thoughts.
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whisperinggums, Thanks for your kind words! Yes the oral meds are a big relief especially when away from home. So much easier to take a tiny pill than to find a quiet and private place to do an injection.
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Thank you for posting about this. The awareness you bring will help move things forward and hopefully one day soon we can look forward to a cure.
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Boarding, and thanks for your kind words and good wishes!
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