MS Strength

I started this website with a vision to empower and inspire other MSers who search the internet for multiple sclerosis information, news, and stories. I guess it’s been a little pipe dream of mine because I like to write and I also like to help others (I spent the majority of my short career in the health and public service realms.)

Recently my website underwent a name change, due to copyright infringements with another website. MS Friend became MS Strength in a matter of a week. I think this new name is an improvement, something of an upgrade: this site is gonna rise to its true, gritty, ballsy name. It will keep me on my toes as I attempt to present what I know and what I learn about MS. My own multiple sclerosis story is currently good, as I relax a bit from the chaos, pain, and grit of the last several years. To view my own journey, check out the “Categories” link to “My Personal MS Story” in the right margin.

I’d like to present some other stories of MS grit. I read several blogs and find such courageous people living day in and day out with multiple sclerosis. I’ve been to several seminars where I’ve met other MSers and I have to admit that a few were big sulkers. When I say “sulkers”, I am speaking about people with MS— generally with moderate disease courses— who complain and have nothing but negative comments to make about their lives and their conditions. They don’t appreciate any of the available medications and don’t want to try any of them, they are depressed but make no effort to change their situations, and they bring nothing of their true selves— their true grit— to the table.

The following links lead you to some of the best, current stories of MS strength that I have personally witnessed. These people plug on and demonstrate grit in the face of adversity, which is what MS strength is all about:

• Nadja, recently diagnosed with MS after a scary attack, talks about the challenges of working full-time as a teacher, getting some help for coping with the disease, and maintaining her sanity through yoga.
• Joan, an MS vet, recently downshifted from a full-time career and now maintains a blog and chatroom that she graciously hostesses.
• Lisa is an influential MS advocate who has been researching medications and big pharmaceutical companies in an attempt to help other MSers. She recently attended an out-of-state conference as a key speaker and navigated a crowded, confusing airport with MS fatigue, weakness, luggage, and a trusty cane.
• Linda, a compassionate psychiatric nurse, takes care of everyone else and maintains a strong position of courage, but she reveals her vulnerability, which becomes her greatest strength.
• Lanette, coming out of a recent relapse, is experiencing job loss and financial uncertainty right before her wedding. She is continuing with the wedding and facing the humbling experience of letting others help her.
• Blindbeard (my absolute favorite blogger) faces many challenges, including a recent divorce, financial strain, a lengthy disability appeal, pronounced MS symptoms, emotional stress, and a house full of chaos. She is currently awaiting an important doctor’s visit.
• Diane (my absolute favorite prolific blogger) writes tons of posts about an assortment of topics, including MS hope with a “Wizard of Oz” twist.

All of these MSers demonstrate true MS strength under pressure. It is with honor that I can present their stories to you in an attempt to give you inspiration and strength during troubled times.

Sincerely,

Jen

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….