So Many Needles…

Julie Stachowiak, PhD 

Writer, ms.about.com

 

This evening as I was going through my nightly ritual, I thought about a blog that I wanted to write about relapses. My mind was busy writing and rewriting the introduction as I automatically washed my face, brushed my teeth and prepared my syringe to give myself my nightly injection. The shot went relatively smoothly, with the sharp pain registering intensely, then quickly receding to become a dull throb when the needle was removed.

I then dropped the used syringe into my large red sharps container. Except it didn't fall in when I released it, but protruded from the top of the opening about a quarter of an inch. My container had become filled to the top with used syringes.

I wanted to shake the container to see if I could make the syringes inside settle, giving me a little more room. When I pulled it out from under the sink, I was shocked at how heavy it was. Once I got it on the counter, it also seemed much bigger than I had expected. And it was full – a couple of shakes did nothing to make more room.

I contemplated the sharps container in the bright lights of the bathroom and unexpected emotion surged in me. This big red box was heavy and full of little bits of daily pain that had accumulated over the past year and a half, injection by injection. I started going down the "why me" road, but decided to be proud of myself instead. This container full of syringes represented many moments of overcoming the self-doubt that had told me I couldn't stick myself one more time. It represented staying with the treatment path that I have chosen, even when I had strange reactions and lipoatrophy that disfigures my body. It was concrete proof that even though I might "look so good" to the outside world, I have a disease that compels me to stick a needle in myself every day.

I also thought about how strange it is that no one besides my husband would see the container full of syringes. I wanted to show people, to put it in the middle of the table during a dinner party and say, "Let's talk about this now." But I wouldn't ever do that. Besides the fact that it has a biohazard sticker on it, making it an inappropriate centerpiece, I think it would also be profoundly disturbing to people who know me, although I can't put my finger on why that would be. It is just too tangible, too real, and maybe too intimate to be whipped out and passed around.

In the end, I stuck the container back under the sink, figuring that I could force a couple more syringes in there before needing a new one. Instead of writing my intended blog on relapses, I decided to write this blog about my experience with my full sharps container.

What about you? Go look at your sharps container. Pick it up and give it a shake. Peek inside. What is your reaction? Would love to hear from you.

 

Choosing…

Marie Cooper

Writer, MS Renegade

This month is the seventh anniversary of finding out I had multiple sclerosis. I was, still am a little, stunned. With incredible irrationality, I was certain that I had already been through enough hard stuff, so I shouldn’t have to deal with any more. I lost an eye in a childhood accident. My husband died suddenly at 40. We had four children and I hadn’t worked full time in 15 years. I worked three jobs at first to keep our heads above water. Over the next decade I worked my way to a successful and lucrative career. This, surely, was now my time of reward for surviving all those struggles. Right? 

Well, as we all know, life doesn’t work that way. There is no cosmic balance sheet of adversity vs. good fortune. Sometimes a lot of good things happen, sometimes a lot of bad things happen. I was just facing another bad thing. But I didn’t want to, darn it.

Initially, I could not even say the words “multiple sclerosis.” I think part of me believed if I refused to acknowledge it, it would not exist. And I certainly would never be one of those crippled ones! I continued to function at top speed. I was a department director at a large hospital, on call 24/7, working 12-hour days. Taking care of a big house and two children still at home. One weekend I cleaned the house from top to bottom, painted all the trim and molding in my bedroom, regrouted the tile surrounding the tub in my bathroom – and landed in the hospital with a full-blown relapse. So much for MS Lite.

It was the beginning of a downward spiral. My high-powered career began to crumble. My life began to crumble along with it. I was getting sicker and sicker. Loss mounted upon loss. I became consumed by bitterness and anger.

My endlessly patient therapist provided support, encouragement and idea after idea. Mindfulness meditation, plain old meditation, prayer, literature focusing on acceptance and gratitude, books on embracing the imperfect self, affirmations and everything else she could find on coping with MS and depression.

Meanwhile, the MS was progressing and emotionally I was a furious mess.  This past December I was physically unable to even get myself to her office anymore. Refusing to give up, she offered to call me once a week and even come to me occasionally. I was devastated by my deterioration, being homebound and developing lymphedema, which has grotesquely distorted my legs and feet. Not to mention dealing with relentless, crippling pain, weight gain, immobility, skin breakdown. In the meantime, I wasn’t going to church, either. The effort it took was too monumental. My spiritual life fizzled out to almost nothing. Everything I had loved and enjoyed was slipping away. I had had it. Enough, I kept thinking, enough. ENOUGH!!

Slight glimmers of my old, fighting self occasionally bubbled up through the fog of misery I had wrapped myself in. The person who always got back up when knocked down, the person who seemed to be only a faint memory, was refusing to go away. But I didn’t want to fight any more. Full of resentment, I was tired of picking myself up.  

But that spark just wouldn’t die. An old friend from high school unexpectedly stopped by one day. When I tell you I looked like the wrath of God, I am not exaggerating. I had zero standards left. Uncombed hair, shabby, stained clothes, no makeup—it was as bad as it gets. I think I might not have smelled too good either. I was so mortified, I wanted to disappear. But he pretended not to notice. He sat with me, talking a blue streak, making me laugh and then making me cry. Pray, he said, just pray and when you can’t pray, just say “Give me strength” over and over. I had been getting this message all along in so many ways, from old friends, from virtual friends online, from my wonderful therapist, but sitting there with Albert, my kind, accepting, compassionate friend, I grudgingly conceded. I knew then I was going to choose to pick myself up once again.

I still HATE this disease. Always will. I will always miss the things it has stolen from me. And I will always be angry about the losses. But, for my own serenity, I am making more of an effort to choose to modify the anger with some degree of resignation. I will never accept having MS—it is unfair and horrible and it just stinks. But I have to live with it and my choice is to live as well as I can. To not make the effort feels like a slap in the face to all the people who love me and give me credit for being braver than I really am. The Black Moments still come. But, with a lot of help and a lot of effort, sometimes in increments as small as one minute at a time, I am trying to choose light over darkness.

For additional information and resources – including referrals to therapists professional in your area – call an MS Navigator at 1-800-344-4867.  

 

Are you there?

Douglas Winslow Cooper

After we moved from Westchester County, NY, to our country home some forty miles north, we would sometimes learn of the situations faced by the members of our former multiple sclerosis support group. One woman is doing well, but her boyfriend has died of complications from MS. The husband of a care-giving spouse, we learned, spent much of his days during fair weather just sitting outside, looking at their garden. Not reading, not listening to music or news, just looking. We felt sorry for both husband and wife.

Approximately half of MS patients develop significant cognitive losses. As with physical impairments, these losses can be intermittent, so the care-giver does not know for sure the state of mind of the cared-for. “Know thyself,“ Socrates advised us; hard to do. Even harder is to know well other people, as we only partly glimpse what is in their minds. For our interactions with some MS patients, this problem is exacerbated: are they there?

When my most precious person in the world is thinking clearly, it is a delight. When she seems confused, then so am I. She will repeat the same phrase or sentence scores of times without pause. It is something she thought or something she has just heard. If I ask her a question, she replies to it briefly, then resumes her mantra. Perhaps she is too tired or the room is too hot. We do not know why she starts, nor why she ends.

Almost always when I enter her bedroom and greet her as my most precious person in the world, she responds, ”I love you with all my heart.” Often, she will then say it over and over again, lest I think she “never could recapture / The first fine careless rapture.“ 

She is there. So am I. We are there.

Douglas Winslow Cooper, Ph.D., a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and she has been quadriplegic and ventilator-dependent at home for almost eight years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available from Amazon. Barnes and Noble, or their website, tingandi.com. 

For People with Multiple Sclerosis Who Are Going to School

Julie Stachowiak, PhD 

Writer, ms.about.com

 

Recently, I posted a blog for parents with MS who are sending their kids back to school, entitled Back to School Time and Multiple Sclerosis. Indeed, this is a rather hectic time for parents and it comes with certain stresses.

However, these stresses are magnified and very different for the person with MS who is also the student heading back to school. Many people with MS attend school, whether they are young people with MS who are attending college or high school, or older people in graduate school or returning to college at a later age.

I was finishing up my graduate degree when I was diagnosed with MS and had been experiencing symptoms for several years before my diagnosis. Although I wasn't sure what was wrong with me, I knew that I had to do things differently around school than I had in my younger college days.

Here are some tips that I can offer students with MS:

Plan your schedule strategically. To the extent possible, arrange your classes around your MS. Take your classes during those times of day that are your best times in terms of fatigue and other symptoms. Breaks between classes are good, but if you take classes back-to-back, try to schedule those that are in the same building, or at least close to each other. Ideally, you could have a day off each week, or a couple of really light days. In other words, look at your schedule realistically and imagine how it will be to go through it day after day. You may have to delay taking a certain class until next semester or next year to make it work – that is okay. You will get more out of school with a sensible class load and schedule. 

Don't overload yourself. On a related note, don't max out your credits. I never learned my lesson on this one. Sure, it all worked when I was in college and had the stamina to take an overloaded schedule. However, in graduate school, I would still add extra classes just because I could – after all, I had paid for them in my tuition and they sounded interesting. I ended up getting less out of my education by doing this, as I was always frantic (and always tired), trying to keep up with the work by doing the bare minimum. I always felt stressed out and I know this made me feel worse physically. Perhaps had I known I had MS in those early days of grad school, I would have been more sensible and taken a normal load of classes.

Make friends to study with and share notes with. There may be days where you don't feel good enough to go to class. Or, even if you do make it, cognitive issues may get in the way of taking adequate notes or following the lecture completely. A good friend will be invaluable in sharing notes and studying with.

No more "all-nighters" are allowed. I remember how disoriented I felt after staying up all night to finish a project when I was an 18-year-old college freshman. I did that a couple of times in grad school and it took me out of commission for a couple of days. Just don't do it. Plan ahead to get your work done on time. Have a strict schedule and stick to it. People with MS cannot afford to abuse themselves by losing a night's sleep.

Decide if you want to share your MS diagnosis with your professors. Although I found out about my MS at the very end of graduate school, had I known earlier, I would have had private conversations with certain professors about my diagnosis. I probably would not have brought it up to the profs that taught the large classes in the lecture halls. However, for my smaller classes that demanded me to be consistently sharp and prepared, it might have been a good thing to let the professor know that I was not falling asleep out of boredom or that my occasionally unsteady walk was due to MS and not caused by drinking the night before. You may also want to explain why you were or may be absent on occasion. Before you disclose your MS status, though, make sure you know what your reason is for doing so.

The bottom line is that school can be pretty hectic and stressful for most people, but for people with MS, this needs to be reduced as much as possible. You will feel better if you can "do school" in a calm, strategic way, and this will lead to a better all-around experience.