My MS Experience

First, let us catch up on how things have been the last few days. In short: alright.

The horrible pain was maybe a tiny bit better on Sunday, which was the first day I took the fully increased dose of gabapentin. That pain was somewhat better yesterday, although I did need to lie down most of the evening. During the day I had very little pain. Celebration!

My fatigue has been about the same or maybe a little better.

Otherwise I am about the same. Still struggling with spasticity, mostly in my legs. I did notice it in my right arm, near my shoulder, on Sunday while I was interpreting.

My brain has been off and on. I had a lot of trouble interpreting for people who spoke quickly on Sunday. I did better for people who spoke normally. One thing I had to be vigilant about was zoning out and signing in English word order. My attention issues are mild, but sometimes they affect me.

So that is about it. Now for the newest installment of psychobabble. Just kidding! I do not mind examining emotions. It can be difficult, but it does seem to help me feel better in everyday life. So now I will respond to a set of questions from my MS and feelings book.

How would you describe what it is like to have a chronic illness to someone else?


Lonely. Oppressive. Scary. Crappy! It is like a constant weight on my shoulders, crushing me a little more every day. Sometimes I get stronger and push the weight up, but it will win out in the end.

I think MS is particularly tough, because most of the symptoms are not visible. That is the whole "But you look so good" thing. That makes me go inside myself and not really tell people how I am doing.

I want to talk about it, and I think I need to talk about it, but I do not feel like I can. People can only hear so much, and I do not want to be a whiner or a negative Nellie. I do not want to lose friends.

Every day is hard. I have MS every day. I want to say to people that as emotionally draining as it might be to listen to me talk about how things really are, it is more emotionally draining to be experiencing those things.

Wow, I can see why the book advised answering these questions when you have plenty of time to process the emotions they bring up.

What have been some of your greatest challenges in facing this disease?


Knowing which doctors I can trust comes to mind first. It has been difficult finding decent doctors. I have often felt anxious and worried about whether they will listen and if I should take their advice.

Another challenge is fatigue. When my body is screaming to lie down, it is difficult to drive, work, and sometimes even sit up.

Cognitive difficulties are challenging. Not being able to hold onto thoughts long enough to act on them sucks. Trying to organize information and understand complex issues can be frustrating. Ditto with organizing language and fluently expressing myself.

Another major challenge is handling the concept that I might become seriously disabled. So far MS has hit me fast and hard. Worrying about bills has kept me up nights. And that does not help with the fatigue or cognition.

And then there is pain. Chronic pain is challenging in ways that most people do not understand. It is worse than throwing out your back. It is worse than passing a kidney stone. It is worse than gallbladder attacks. I can say that with intimate knowledge of how those things feel--and they are horrible. My chronic pain is worse, because those other conditions have an end. And they have painkillers that can help. No painkiller can touch dysesthetic pain, because it is not actual pain. The brain experiences it as pain, so it feels just like "real" pain. But it is just damaged, confused nerves sending a variety of pain signals, which arrive at an intensity that the pain "sorter" in the brain cannot handle, so it shorts out and diffuses the pain signal all over the brain.

How do you feel about the invisibility of the disease?


I already brought this up, under the first question. It sucks.

But it is also good, because I can remain on the DL at work. Double-edged sword, I guess.

What happens when you speak openly with your loved ones about the illness and its impact on you?


Sometimes I get sympathy... for a time. Then people forget and go back to expecting that things will be as they were. Things will never be as they were. I will always be disabled, and it is probably going to get worse.

Sometimes I get blank stares.

Sometimes I get quick responses that clearly signal a desire to end the conversation NOW.

It makes me really sad. Maybe this is why I feel so alone.

How has your life been changed by this disease?


I am earning less, because I had to cut back on freelance work.

And I am in debt, because I have had thousands of dollars of medical expenses in the past six months. And I have health insurance!

It has changed my priorities. I do not have energy for everything, so I cut out things that are less essential. Keep in mind that less essential does not mean nonessential. I often feel guilty that I cannot do everything that I used to do for people.

On the other hand, I recognize that this might be the best I will ever feel, so I try to make the most of things. I joined the choir at church, despite the pain and fatigue while I am there. I am planning to ski as much as possible this year.

And it makes me want to be a really good person. I know that I am not going to die anytime soon, so it is not because of that. I just need to be close to the Lord, and I need blessings. It is hard for me to feel close to the Lord, for some reason. Almost like there is a numbness there. I am having to work for it.

I think that my fuse is shorter, because I am under so much stress.

I feel like my work options are more limited. I must have employment with benefits. For several years, I have wanted to go back to school and get my PhD, but now I feel that may be impossible. How could I make ends meet? How could I survive without health insurance (or on a crappy student plan)? And how could I do a dissertation project if a relapse hit?

What have you had to give up because of this illness?


My dream of having a private practice or preschool. And I have had to give up many smaller things, like dinner with friends when I am tired or having a clean kitchen.

Another dream was to teach at a university. That would require a PhD--see above.

And money! Oh, the money I have given to doctors and hospitals.

What are your greatest fears about the illness?


Being so disabled that I cannot care for myself.

Losing my independence.

What have you gained as a result of this disease?


I have gained a truly eternal perspective. I have always known why I am on earth, but somehow that gets lost in the need to work, clean, cook, etc. I cannot say that I am always acting on that knowledge, but it is there more often. And it is there in a more profound way.

I have also gained a deeper respect for people with disabilities.

What advice would you give someone who is newly diagnosed?


Give it time. Let the words multiple sclerosis marinate in your heart for a while. Seek out information as you are ready. If you are scared to read a brochure, then do not read it. There will come a time that you have a strong desire to learn about the disease, but it probably will not be the first week or two.

If you have a spouse or friend who is willing, have them read the information on the National MS Society website and other reputable websites. Ask them to tell you some of what they learn. They can censor the scary stuff for you and just let you know what you need to know for now. Treatments options, perhaps.

One thing you should know is that you are not alone. Other people have been through the same things as you. There are support groups, both online and in person. And despite what doctors may say, you are not crazy. Too many of us are told that.

Also, accept whatever you are feeling. Anger, denial (not for too long), anxiety, sadness, and fear are all normal responses. Think of that cheesy pop song, which reminds us that the only way out is through.

One thing that will be difficult is managing your medical needs while you are sick. Because you will probably be diagnosed during a relapse. If someone else can make the appointments, pick up the medications, call to bug doctors for test results, and drive you to appointments, let them! If not, set a goal of doing at least one of those things every day. Managing your medical needs can be overwhelming.

What impact has this disease had on your relationship with others?


It has brought me slightly closer with my dad.

It has brought me slightly further apart with my sister and my best friend. My sister talks too quickly and too much, so I avoid her. Not always consciously. She just wears me out. My best friend.... I did so much for her before. Now I cannot.

I have become closer to my other best friend. Or perhaps we have both been reminded of our closeness, of how much we love each other. But sometimes I wonder about that. She has not visited me. Remember how she said she would, and then I was crushed when she canceled. She has a large family. It is tough, because although I can drive far enough (about three hours), I cannot visit her. Extenuating circumstances.

I have made some new friends that I probably would not have made if I had not had MS. Asking people for help gave me an opportunity to get to know them a little.

Describe the way you communicate with those close to you about this disease.


Hm. Poorly?

This blog is one method of communication about my disease. It is good for acquaintances, people I do not see every day.

I usually do not bring it up. If asked, I absolutely will talk about it. I love to talk about it. But I do not think people love to hear about it.

At home, I sometimes become frustrated when expected to do something I cannot do, and then I will angrily or tearfully explain why that is too hard for me.

What do you think are some common misunderstandings about your illness?


Some people think confuse it with muscular dystrophy--Jerry's kids. MS is not similar to that.

I hear that people assume that you will be in a wheelchair soon, but no one has expressed that to me.

People are always surprised that there is not a medication that can control the disease. I was surprised about that. There are medications that slow the progression somewhat for some people (responsiveness varies), but they cannot make you get better or even remain as you are.

Other common misunderstandings are that pain and cognitive dysfunction are not associated with MS. Oh, boy. So wrong.

Doctors commonly have the misunderstanding that MS will always show up on an MRI, or that lesion load is somehow related to disability. It is not. It can be a predictor of future disability, but there is not a direct relationship between lesions and symptoms.

What do you keep from your loved ones, if anything, in order to spare their feelings or protect them?


My day to day struggles. My fears for the future. I have occasionally expressed them, but not every time I struggle with them. If I talked about MS every time I thought about it or had a problem, we would talk about nothing else.

When do you feel most supported by others in dealing with your illness?


When I tell them how I feel and they express sorrow or give me a hug. But that does not always happen when I talk about how I feel, so it is not like I can count on having that support.

I rarely feel supported at this point. People were good about it at first, but they were not able to maintain.

Has your disease affected you positively, and if so, how?


Yes, as I described above about gaining a true eternal perspective. And increased patience with other people. Sometimes. It is not like a button was pressed and I am suddenly this amazing, long-suffering person.

What causes the most misunderstandings about your disease?


People not understanding the concept of chronic illness. It does not go away. You go about your life as usual and forget about it, but I cannot forget about. And I cannot go about my life as usual.

What have you felt to be most helpful in coping with your condition?


Talking to people who are willing to listen. Doctors who believe me. Other MSers who validate that symptoms or feelings are experienced by others.

Blogging! Blogging helps more than anything.

Is there anything that you haven't expressed to anyone about having this disease? Why have you kept this to yourself?


Well, I have blogged an awful lot. Much more than I have verbalized to people. But writing is still expressing myself.

I have not told anyone that I wonder if/when I will live in a nursing home. If I will be younger than everyone else. I wonder if I would be bored there, or if I would be happy playing cards with the old ladies.

Sometimes I forget people that I do not know well. I mean, I know these people--normally I would not forget them. I feel like I know their face, but not their name or who they are. That makes me feel distressed. I do not want them to think that I do not value them, but at the same time, I do not want to admit that MS is the reason I forgot them. So I say vague things and hope that something they say will jog my memory.

I think that is about it. There are things I have not shared on the blog that I have shared with my best friend and vice versa. But just about everything gets shared somewhere.

How has having this illness affected your self-esteem?


MS has greatly affected my self-esteem. I am less capable of doing things for others, which makes me feel less useful. I feel like more of a taker than a giver, which is absolutely the opposite of the typical way I operate.

The cognitive problems have challenged my self-concept as a highly intelligent person. When I cannot understand something, I certainly do not feel intelligent. I do not feel like me.

What changes have you made in your life to accommodate or adapt to your diagnosis?


I try to get more rest. I sometimes let people know when I cannot do something, or when I need help.

I have cut back on work, as well as personal activities. My brain is not cooperating right now, so I cannot think of what I want to say instead of "personal activities."

I take a lot more pills!

I rely more on assistive technology, especially my electronic calendar and reminders.

What do you want other to know about this disease?


I need you. I need your help, your understanding, your patience, and your kindness. I need your listening ear.

And MS sucks. It sucks every day. You might not have thought about it since the last time you saw me, but it has been with me every moment since then.

MS is unpredictable. I might need to cancel plans. You should know that I feel terribly if I have to do that, but you should also know that I must be pretty bad off if I canceled on you. Generally I will run myself into the ground before I will cancel something.

MS affects me globally. It affects the way I move, the way I think, the way I feel physically, and the way I feel emotionally. And it is not going away.

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Doing this exercise was therapeutic and sometimes surprising. Some questions made me sob, but I was able to answer others calmly. The ones that really got to me were questions about being newly diagnosed and anytime I described how it feels to have MS. I think that the time of my diagnosis was very traumatic for me. I did not realize it at the time, but looking back and also considering my emotional response to these questions, I can see that it was. Maybe having it is constantly traumatic. Reminders of my feelings of loneliness made me cry.