The Squeaky Wheel - Asking for Help During an MS Episode
Not everyone is like me. I’m a big-time communicator and very in touch with how I feel and what I need and I’m not afraid to ask for it. If I want a beautiful ceramic mug for my anniversary, I email a link to my husband. If I need a hug or to hear that I look nice, I tell the aforementioned person. This approach doesn’t work for everyone. Some want their needs to be understood (clairvoyance is very helpful here) and when they aren’t realized, there is disappointment. I’m all for putting it out on the table to increase the likelihood that I’ll get what I want (mug) or need (hug).
So that being the case, why is it that I have such difficulty asking for help when it’s clear I need it? Unfortunately with MS-related issues, it’s not always that clear!
In order to ask for help, you have to know that you need it; pretty basic, right? How could I not know I need help? I know, it sounds strange. The word attack isn’t used to describe anything subtle. It’s something sudden, surprising and not good. So how is it that these pesky episodes sneak in the back door?
I’ll explain. During the past 10 years (of my 23 years living with MS), I have accumulated symptoms that never go away and - quite frankly - I do a pretty good job coping with them. But these full-timers are constantly changing in severity. I can start the day walking my daughter to the bus stop and by the evening I can’t stand long enough to unload the dishwasher. (I know, who wants to do that anyway?) So this is why it can be hard to notice when something gets worse. (Attacks aren’t always new symptoms, they can be worsening old symptoms, too.) Sprinkle that with a little denial (often a handy coping mechanism) and you’ve got the recipe for lack-of-perspective a-la-mode!
It wasn’t always like this for me. For the first decade or so I might start the day with no problems, then an attack would hit while I was at work at the film archive and I would go all Boris-Karloff-in-gauze and drag my useless leg all the way home. That was a no-brainer!
Back to 2011: I finally figure out that I may be having an attack. When my husband – Keith – points it out, I’m actually relieved that it may be an episode and not me getting worse. (Whew!)
Having someone outside of your brain to provide this perspective is critical. If you don’t have a Keith (or a person who goes by another name), there are many other options. You can start a journal that details your every-day symptoms. If you prefer the digital approach there are a number of options. Websites exist that have wonderful tools to help document the changes in your disease path, complete with some very cool graphs. If you are the more the PDA type, there are smart phones apps for this just this purpose. I was researching and found MS Assistant; it looks pretty good.
The only thing with all of these techniques is that in order for them to work, you have to use them. I’m not so good at sticking with it. I’m not sure whether it’s my ADHD tendencies or the fact that those cute little graphs with a downward arrow make my disease path too obvious! But you should do it. I’ve heard it’s very effective.
So, let’s see where we are:
- Recognizing the Attack; check
- Employing your support team; check
- Making the appointment with your neurologist... priceless.
The MVP of your MS team is your neurologist, preferably one who specializes in MS. Once the undeniable is confirmed - Yup, it’s an attack – the doctor will suggest a strategy for fighting back.
The way home from the doctor may be an appropriate place to figure out your needs for the actual in-treatment time period. (This depends of course, on how you’re getting home!) Whether it is someone who can be there while you’re on the steroid pump or someone to cook you dinner (and unload your dishwasher), look to your support crew and ask what they can do for you. (You might want to pick the best cook!) If your family is your support team, try to be specific when telling them what you need - unless they are blessed with a sixth sense! It will help them to help you.
And if you’re the kind of person who struggles with asking for help, I highly recommend you get... over.... it. Not only will you benefit by extra hands, extra encouragement and if appropriate, extra hugs, it’s probably safe to say that those who feel helpless watching your challenges will feel really good to do something for you. Of course the increased Karma will make it a win-win situation!