MS Strength

Being a current couch dweller (a loving term for an MSer who finds herself stuck to her couch), I have a lot of time to ponder why. I’m not clinically depressed, because I was twice in the past and both times it took therapy and medication to pry me off of the couch. I’m also not overly fatigued– I’ve been there and know the huge difference. These said conditions can both be severely debilitating and two of the biggest reasons people with multiple sclerosis end up stuck on the couch.

So then what is going on with me?……Simple: MS apathy. This is my loving term for having MS and no steady occupation. I don’t only mean a job; I also mean basic occupation or what fills up the day. Not too many people out in the work force ever think about this. They usually suffer from the opposite: stress. The same is true for stay-at-home moms and dads.

I’ve suffered from apathy in the past. I think it comes from not having a definite, concrete reason to leave the house. I’ve been volunteering two week days and one week night at the library and I have some writing assignments that are keeping me busy, but I have to say that when I leave the library, I sometimes get a twinge of longing to work outside of the home again. This has been a problem for me in the past few years, so I am coming to terms with finding a new path that is more flexible and won’t make me reneg on work commitments.

So the apathy ebbs and flows, just like MS depression, fatigue, and other symptoms. This is what I’ve learned in the past and the following tricks I’m presently using to get “unstuck”:

Scheduling things that are commitments but not demands

When feeling apathetic and in need of a gentle push out the door, try to plan things to get out of the house. These commitments can be volunteer hours, regular visits with friends or relatives, regular therapist appointments, interesting group meetings, fun classes, and so on. They are things that should be done, to get the body up and moving, but not hard demands that lead to guilt and frustration if cancelled.

Scheduling things during the best hours of operation

Are you a morning person with the most energy during this time? Or do you gain speed later in the day? I myself will turn into a night owl if left to my natural rhythms. My Betaseron shots also tend to give me a “hangover”, with slight to moderate flu-like symptoms until about 11am or so. For this reason, I make most of my commitments after 12pm, unless absolutely necessary. This way I have less of a chance of bailing out and feeling bad about it. I also find doing things in small blocks of time keeps me committed and not overwhelmed.

Finding a comfortable level of outside occupation

This always stymies me. It’s difficult to find a happy medium between overdoing it and being completely underwhelmed. Somehow the housework grows boring and the computer overheats, but venturing out can be scary because MSers as a group do not always know what will be okay and what will be completely draining and overwhelming. Sometimes it’s a matter of trial and error. Finding a stimulating but not overwhelming level of occupation can help control apathy.

This is what I’m currently working on as I try to see (yet again) what is just right for me. I’m not completely apathetic, just slightly bored….

I am an optimist. I wasn’t always this way. It’s a learned optimism that has worked to my advantage. MS has tested my mettle so many times: taking away my driving ability, my sanity, my energy, my proper bladder and bowel functionings, my career, and my stubborn pride. Most of these things have been restored, or at least brought back to a functioning level. A couple of things are still pending, but I refuse to let this stupid disease get them.

Because it is unrealistic to think that life’s glass can ever stay completely full at all times, I am satisfied with keeping it half full, as opposed to half empty. Here is what I’ve learned about keeping the MS glass half full:

Be the Tortoise, Not the Hare

I used to rush around, giving little thought to what I was doing hour-by-hour. More interested in the destination, not the journey. I didn’t thoughtfully plan for things that gave me true, lasting happiness. Now that I have more time on my hands (maybe too much some days!), I stop to think about what will make me genuinely happy. Or make someone else happy. True, deep happiness is now high on my priority list. I work slowly towards my dreams— having a freelance writing career that will financially provide for myself and my husband, possibly adopting a child, possibly getting a higher degree in something (I love learning new things.)….I think all of these are possible, but with MS they become true, deliberate gifts through slow, deliberate planning. Bill and I like to compare ourselves to Bill and Karolyn Slowsky, the turtles in those cable commercials. Slow and steady….

Don’t Give Away the Emotional Farm

This might sound greedy and selfish. But it’s not: I selectively choose what to focus my mental and emotional energy on. I cannot possibly listen to everyone’s problems, help everyone with their problems, be everyone’s best friend, and expect everyone to listen to my own problems. It’s just not healthy for anyone. When my friends start in with problems, or I find myself venting, we reciprocally do this for a bit, but then we move on. Unless it is something completely traumatic, we all know that it, too, shall pass. I’ve also gotten rid of foul weather friends— those who only like me when they and I are miserable— because they can be worse than fair weather ones. It’s all a matter of self-preservation. I’m a big fan of survival.

Choose Joy

Sounds crazy, doesn’t it? That someone would choose misery intentionally. However, joy doesn’t happen automatically. It must be sought and cultivated. It must be regularly tended and held in the highest esteem. Even during the darkest hours, when MS wants to steal it all away. Say no. And hold onto it tightly because it is rightfully yours.

Find Something You Love or are Exceptional at and Cultivate It

What comes easily for you? Leading others? Writing prolifically? Are you good with numbers? Is it art? Is it your fabulous golf swing? Do you simply have a gift for conversation? Then as the Nike commercials say, “Just do it!” Find that thing that you were meant to do and BRING IT. It will, in return, provide you with so much joy. There is always something you can do, no matter what your condition. Something that is a gift in you.

Don’t Confuse Optimism with Fantasy

Optimism is not thinking that your MS will go away. It is not thinking that being joyful will take away all your money problems and health concerns. I watch my own limited income come and go in a matter of a week and wish I was working full-time again so that we could just go on a much needed vacation. But I will be satisfied with a weekend trip to Cape May or maybe Atlantic City. I’m so glad we’re able to do this again, after several years of totally struggling. No more fantasies about wealth here!

Be Grateful for the Big and the Small

1. I’m grateful for having a moderate course of MS, because so many people do not
2. I’m grateful for my tiny shack of a house, because we didn’t lose it when times were the toughest
3. I’m grateful for my writing abilities, because they will come to sustain me both mentally and financially
4. I’m grateful for my wonderful husband, who has been nothing but supportive, both emotionally and financially….because I know that so many folks are travelling along this MS journey without a mate
5. I’m grateful for the humbling experience of accepting help (both emotional and financial) from family and friends
6. I’m grateful for social security disability insurance and our modest health insurance, because so many MSers are still trying to get by without either, and this is what’s keeping us from complete poverty
7. I’m grateful for my cat, who is fat
8. I’m grateful for the sun that shines through my patio door at the present moment

Like any chronic illness, multiple sclerosis can cause depression. People who never thought they could be down in the dumps find themselves helpless against the despair that illness can bring. Chronic neurological illnesses, including MS, can have frightening symptoms, such as seizures, loss of motor functionings, fluctuating mental capacities, or odd sensory perceptions.

At the same time, studies have shown that depression can come from the disease itself. And what about interferon medications? Do they bring about the blues? With so many factors contributing to depression, it’s a big question whether MS depression specifically comes from the disease itself (organic), from the stress of being chronically ill, or even from one of the disease-modifying medications (situational.) And can the depression stem from a combination of these things?

Organic Depression

Doctors believe that multiple sclerosis depression can be caused by the illness itself. Apparently, inflammation and myelin scarring can form in areas of the brain that control emotions. Just like other symptoms that come and go at whim, depression can strike for no reason— a person may not be experiencing any other symptoms, an acute attack, or traumatic stress in his or her life. Many people with multiple sclerosis experience depression at some point during the disease. Lots of these people battle chronic depression. Chronic depression with MS can be the result of attacks that have caused inflammation and nerve damage, and this depression becomes a chronic symptom, much like tingling or numbness.

Situational Depression

On the other hand, MS depression can be caused by external circumstances that induce it. A primary depression trigger is dealing with the stress and uncertainty of chronic illness. People with multiple sclerosis must handle recurring symptoms such as fatigue, weakness, and/or pain. This interferes with jobs (for those who can work outside the home) and personal lives. Those unable to work outside the home deal with isolation. Then there’s the uncertainty of the future. Will there be more attacks? Will they be more severe? When will they strike? For all of these reasons, multiple sclerosis depression can set in and take hold.

Another situational depression factor is the use of some of the disease-modifying drugs. These include Avonex, Betaseron, and Rebif. All of these drugs are called interferons, and all have the capability of causing depression. The drugs can reduce seretonin levels in the brain, causing the blues. Not everyone experiences this side-effect, so it would be hard to say if a user’s depression definitely came from one of these drugs.

Conclusion

With several factors possibly contributing to depression, the source(s) cannot be 100% determined. Whatever the reason for multiple sclerosis depression, it is real and it can be treated. Whether organic or situational or a combination of the two, it can be helped in order to better cope with chronic illness. Taking the bull by the horns allows for a more fulfilling, happier life, despite having MS.

• Reference: NMSS.org
• Article originally published by Jen at Suite101.com on October 5, 2006
• For further information and help for MS depression, visit The National Multiple Sclerosis Society, WebMD, and Merely Me @ My Depression Connection.com.