Multiple What?

One of the best excerpts I've read on MS.. Take a minute if you or someone you love has MS... it may hit your heart.

"Imagine feeling weak, in pain or like you have the flu and you struggle just to lift your arms or stand, knowing you need to do every day things like take a shower, make a meal or wash some laundry. Each day you must pick and choose one or two things to accomplish, leaving the other 100 things to accumulate.

Going out for an errand or social gathering takes even another juggle. In order to exert the energy to do this, many with MS must prepare for the journey by giving up various daily duties. For some, after the excursion, their symptoms often multiply and intensify.

Your friend or relative may experience  symptoms from the inside that can be debilitating, even though they appear to be fine on the outside. As a result, we need to learn to listen to them when they tell us they are unable to complete a task or participate in an activity.  

We often have difficulty understanding these hurdles, but it is crucial for us to allow those living with MS to make necessary changes according to their limitations.

In order to cope and thrive, they must avoid  overdoing and overexertion or their symptoms can worsen. Therefore, it is very important to remember that they know when and what they can and cannot do, in order to manage their MS.

We should not feel as if we need to “cheer” them back to the “way they were before.” Remember, your loved one did not choose to have this disorder and they will fight every day to keep their dreams and desires alive. Most likely, no one would like to be back to normal our loved one. Nonetheless, faulting them for  not being able to do things they used to be able to do, could only make them feel as if they are no longer valuable.

In fact, the last thing they want is to give up those   activities in their lives that are dear to them. Yet, when they push themselves beyond their limitations, they can become much worse. As a consequence, increased stress, exposure to heat and overtaxing oneself can all cause a relapse, exacerbation of symptoms or even  further permanent damage. 

The best way to support a loved one in this situation is to allow him or her to say, “no” when they feel they need to, even when we do not totally understand why. If they are repeatedly asked to do what they have told us they cannot handle, this will only add to their frustration,   feelings of worthlessness and mourning of their losses. Moreover, they will feel alone in their challenges, because we do not understand or respect their boundaries.

What Can We Do?

1) Avoid the temptation to make a visual diagnosis by stating, “Gee, you look like you are feeling good.” We cannot see how they feel on the inside, from the outside.

 2) Learn to be aware of their symptoms, despite how chipper they may appear during our visit with them. After all, they smile because they enjoy seeing us. They are also trying to keep a positive outlook, despite the pain, not necessarily because they feel good and are doing well.

3) Do not push for them to tell us they are “having a good day,” if they are not. Some have mostly good days and some bad. Some have mostly bad and some good. We should allow them to be honest.

4) Acknowledge what they are going through. It may mean a few or even a whole lot of changes and losses. They do not require our complete understanding, just our belief in them.

 5) Respect their limitations. When a person has MS, they must manage their condition by staying within boundaries. Over-doing oneself only can lead to increase in symptoms. We must allow them to say “no,” even if we do not fully understand.

6) Tell them how much we admire their strength and determination. Many times people living with illness are treated as if they are just being weak or lazy. But, if we examine the evidence, we will find someone who actually has incredible courage, strength and perseverance."

http://www.invisibledisabilities.org/educate/invisibleawareness/multiplewhat/