The MS Empathy Kit- What MS Feels Like
Relapsing and Remissions
What does it feel like to have MS? I don't know of too many caring people who have not given that question some thought. Quite simply put, MS can be painful, disorienting, debilitating and destructive. Needless to say, it takes some getting use to not just for the MS patient, but for the healthy mate and their children.
On the other hand, however, it can also be remitting - so remitting that it can almost feel non-existent. Those are the best of times for MS sufferers. It can feel intoxicating to enter a remission that allows you to regain the function of a part of your body or mind you thought you'd loss forever. Your family life is enjoyable and peaceful at those times as well.
Its like feeling reborn. Like someone took YOUR body and transplanted it with another one that works the way it should-when it should. If the remission is "complete" you begin to wonder if anything was ever truly wrong with you to begin with. It truly is exhilarating when in a split second you are suddenly OK again.
I remember during the first 5 years of my diagnosis, I was still able to experience those complete remissions. I would be laying in bed, sick as a dog, motionless, tired beyond any type of tiredness I had ever experienced before and then without warning, as if someone flipped on a switch, I would be FINE again. It actually felt like the room I was in suddenly brightened, even if it occurred at night. I would be alert, strong, anxious to set up and talk. I would look at my husband in complete amazement and declare, "I just went into remission!" He would of course be very skeptical and ask me if I was sure I was feeling better. I would reply, "Yeah, I'm SURE, I'm in remission now!" Off I would go, to do something, anything, even if it was just to bounce down the steps to the kitchen to get something to eat or drink. "Awww, this feels so good!" "Its like I don't even have MS any more." I would repeat over and over again.
We learned rather quickly to take advantage of any remissions because just as suddenly it could all end. One minute you are feeling fine, and the next you could go through what happened to me. I would suddenly get really dizzy. So dizzy I couldn't stand, or even tolerate any type of sudden noise. The TV was turned off because it seemed the sound of the voices made the dizziness increase. That type of dizziness could only be eased by Meclizine or Antivert. I would have to take the highest dose prescribed which in turn made me so drowsy that I would sleep most of the day. As soon as the medication began to wear off, the world would begin spinning uncontrollably, which sent me running for my pills. Once the lesion began to heal, I would get relief from the dizziness. But at the beginning of my MS journey, it took months before the lesion/lesions responsible for the dizziness loosened its grip.
Today, I'm happy to report I rarely have that type of dizziness. I'm so thankful for that. Maybe it returns once every 1-2 years. I am able to handle it by laying still, getting some sleep and waiting for it to pass. Nowadays it passes in a matter of hours, not days.
Way back when though, as soon as the dizziness let up, I was out enjoying life again. We would take mini vacations, do all the things we had put on hold and get to no one another and our friends again. Without that cumbersome MS hindering our enjoyment of life and each other, we would begin living "normal" lives once more.
Relapse Time Returns
When MS returns, it can hit like a sledgehammer. The smartest way to handle it, I find, is to educate yourself, prepare for the worst and hope for the best. The human mind can get used to just about anything if we allow it to do its thing. I'm always amazed at how my body constantly works to adjust to whatever is flaring up, while it attacks itself at the same time.
The Empathy Kit is Born
Years ago, at a online forum board that is no longer around, we came up with the idea of a list of activities or feelings that would come close to mimicking MS symptoms. Many members of the support group were feeling agitated or angry over the lack of understanding demonstrated by family and friends. Many were hurt and felt the insensitivity of mates who were healthy and tired of dealing with MS.
Hurtful things can be said between marriage mates. The healthy mate can feel frustrated while the sick mate can feel guilty and frustrated andalone with the illness. Being able to suggest the mate try one of the below mentioned suggestions empowered many support members. The suggestions, or empathy kit as I call it, can be a way of opening up communication between marriage mates which can help the marriage survive the turbulent MS storms.
Dee was an active member of the support group at that time. She devised this list and I think you will agree she did a good job. The support group and many different ways to explain MS symptoms, but she condensed and modified it to suit her website.
- How Does MS Feel
Deeane describes the courage and strength it takes to live with MS day after day. She gives a voice to many MSers struggling to make their friends and families aware of what they are going through. She designed a beautiful chart so please take a look
Extensive List to Make MS Symptoms Easier to Understand
Dee has included a chart on her website, which you can see if you click on the link to the right. It is set up really well and I would encourage you click on the link for the best understanding of this hub.
For those who do not wish to see the chart, then all I can say is you will not be able to understand how difficult MS is, unless you go to the source. In this case a joint effort took place and Dee put her own special touch on it and published it for all to read. As you will see, having MS is no picnic, in so many ways.
Still this chart wasn't made to elicit pity, but was developed to give any who are willing to be educated, a glimpse into the daily struggles MS presents.
Unfortunately too many people are critical and lack any type of empathy. The tongue-n-cheek style is aimed at them, whereas the exercises suggested, are for those who really are interested in really knowing how MS feels.
If you try any of the suggestion, please let me know in the comments area what it was like for you. I'm curious if the suggestions will translate into an actual MS-type experience.
Are you ready? Feel free to click on the link now and then come back.
At the end of the chart Dee has this to say, "now add all of the above symptoms - welcome to our world.
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer."
So there you have it.
Did you try any of the suggestions? Which one did you try? Were you surprised at how it felt and did it hit you as to how hard it would be to experience your feelings the vast majority of the time? If you can answer yes, then you are an empathetic person, and are now ready to discuss MS with another MSer in a way that will undoubtedly pleasantly surprise them.
If you still don't get it, then I don't think you ever will, unless of course MS smacks you in the face some day. I hope that never happens, because as irritating as it is to have to deal with a person who lacks empathy, I wouldn't wish this disease on my worse enemy.
Are You Newly Diagnosed?
If you are please don't let this list freak you out. Some people don't experience any of these symptoms, some experience quite a few but they don't hit all at once. Some people experience some symptoms at the beginning of their diagnosis, but then the lesions causing the problems go away and you might not experience them again. Give yourself a good 2-5 years before you feel sure you are going to have lasting damage. The medications available and different rehabilitation therapies really do slow down the disease's progress.
Doing the little things also help, especially with relapsing/remitting. Eating right, exercising, keeping other problems at bay, all ease the pressure put on your already weak immune system. Don't borrow trouble, just use this list as a reference source for the future.
For those of you who have been kind enough and interested enough to read this far, thanks very much. I hope you will be able to use this article to relate to your friends or family members better. I know my husband tried a couple and he give the list a thumbs up in helping him to relate to what I go through in a more personal way. I hope it does the same for you.