When and how did you get MS?
Multiple Sclerosis is a very difficult disease to diagnose and treat as each individual’s experience with it is quite varied. It is an autoimmune disease which means it is “a disease in which impaired function and the destruction of tissue are caused by an immune reaction in which abnormal antibodies are produced and attack the body's own cells and tissues”
Specifically, Multiple Sclerosis is “A chronic autoimmune disease of the central nervous system in which gradual destruction of myelin occurs in patches throughout the brain or spinal cord or both, interfering with the nerve pathways and causing muscular weakness, loss of coordination, and speech and visual disturbances.”
At this point there is still no definite cause of MS, although there are lots of speculations about how it is caused. I first started having symptoms of the disease in 1995.
What are some of the daily challenges or impediments that MS causes you?
MS damages the brain and spinal cord which cause numerous challenges which also vary with each individual
The most common difficulty, one I deal with daily, is vision problems, because of damage to the optic nerves in both eyes: low vision, blurry vision, double vision, and having my eyes go out of focus when trying to do something, (like cut hair or read) are what I experience daily. I have had times where I was blind for weeks, gratefully that went away.
Another common difficulty which I experience is fatigue: it is as if I ran a race of a hundred miles sometimes when I try to walk across a room.
Because MS also atrophies the cerebellum (in the back of the brain), I experience dizziness and difficulties with balance. I also have tremors in my hands, and tingling in my face and limbs from this damage.
I also experience cognitive difficulties: when I try to find something in a drawer, I get confused, and need to walk away. If I try to add or subtract, I get confused. Sometimes I don’t know what words to use. Also my short term memory seems to be missing most of the time.
Because of the cognitive difficulties I am not able to drive and need to depend on others to get around.
I have weakness in my limbs which makes it hard to walk or hold onto anything for very long.. I have to use assistive devices such as canes, walkers and wheelchairs to stay safe from falls.
Everyday things that are effected by MS; showering, driving, writing, reading, job, etc…???
Showering: because of weakness and dizziness, I have to be very careful when showering.. moving my head to quickly will cause a fall
I am not able to drive right now
Writing is hard for me as my hands don’t always cooperate, and get very tired and numb
Reading is difficult because of the eye fatigue it causes
I am not able to work because of vision, dizziness, cognitive issues, and fatigue.
Have you encountered any discrimination?
When I realized that I would be dis-abled for the rest of my life I had to make a decision: would I be a happy disabled person or a crabby one. I chose happy. Because of this, I believe that people treat me better than if I was crabby. People don’t usually know what to do with a happy disabled person; it is strange to them, so they just smile sheepishly and try to help.
The only thing I see that is difficult is when trying to get in a building and the door doesn’t have an automatic opening, or when the handicapped access is way around the back of a building and you have to go quite a distance further than “normal people” to enter the building. This is not exactly discrimination, but my making things harder for one who needs extra help, it is as if you are not thought of as an important member of society. “Those people just don’t need to go there” is what a woman told me when we were discussing access for disabled people, not knowing that I was one of “those people”.
When I first started getting sick some of my friends just couldn’t take it and they just walked out of my life.
Are there any modifications or adaptions to you to help you cope with MS?
Yes, I need to always use an assistive device when walking. I need help getting up and down, so having a walker present when I am sitting down helps me assure that I will be able to get up.
Using grab-bars in the bathroom to hold on to help.
I have to monitor how long I do something so I don’t go past my ability to cope with things.
I cannot go on hikes or go in the ocean because I am not strong enough. So I have to consider if I walk that far, I have to get back.
I always use a wheelchair when traveling on an airplane.
I ask my husband to carry any liquid drinks for me as my hands go numb and I drop things. This keeps my hot cocoa in the cup and not on the floor every day. The occupational therapist gave me a gripping tool, which helps
I have what is called a sock donner. It helps me put on socks.
My husband checks the back of my hair because my hands shake so much I can’t see the back of my hair when I am trying to hold a hand mirror.
I have to decide daily that it is okay if I cannot do everything right or well.
I have to decide daily to ask for help rather than have a disaster.
My coping mechanisms are varied: I read, I pray, I spend times with friends that love me. I also am in a polka dot phase. I look up polka dots on the internet and see all kinds of fun things. I did buy a few things that are polka dot: shoes, purse, some tops. It makes me laugh and laughing is always a great coping mechanism!
I also write poetry to process all that I am experiencing.
I have physical therapy to help me with balance, occupational therapy to help me get in and out of cars, do daily routines, etc.
Medicines I take are for pain and nausea. I do not have any medications specifically for MS right now.
What has the disability taught you about yourself and life in general?
I must say that having MS is the biggest blessing of my life. It may seem strange to hear that, but it has changed so much. I have new friends, I understand the role of faith in our well being, I had to slow down and can enjoy so much more since I am not going a hundred miles an hour all the time. I can give grace to those who cannot handle what is going on with me and hold no grudges.
I read a book about MS and it said that if a person is not an A-type personality, look for a different disease. I believe this! Most people I know who have MS are the type of people who will say: I will not be identified by this disease! And then they go about learning all they can about it to help themselves.
Another thing I have learned is to give myself grace. To not judge myself when I can’t do something at all, can’t do something well, or when I do something very poorly. Perfectionism is a hard task master, and it must be left behind if I am to go forward living with disease.
I have learned that it is important to not be stubborn and ask for help. I need to not be too proud to ask for help. I have learned a whole new level of humility.
I have learned that when I think of someone I need to write a note or say a prayer right then, because I won’t remember to do it later.
I have learned that I have a whole new way of ‘being there’ for people and that it is okay. I cannot “do” things for anyone usually, but I can be with them and listen to them and love them.
Any advice for others with MS?
One of the things that I tell my friends with MS is: this not going to kill us, it just is inconvenient. Keeping that mindset helps every day not be a crisis.
Also take time to journal and really feel your feelings.. this will help you cope better. It is best to process feelings rather than hide them. There is a lot of loss, and sometimes you need to grieve the loss of ability or freedom.
Make sure your friends are those who support healthy physical and emotional activities. Having friends who listen without judgment is very helpful!
So many people want to ‘fix’ you with the latest thing they heard would help you, and you can smile, thank them, and give them grace.
Make sure that you do not have victim mentality, or the ‘poor me’ syndrome - this only makes things worse. Being on top of the circumstances and not under the circumstances is the best thing you can do. I wrote a poem about it:
Not a Victim
by Barb Berens
I am not under the circumstances..
I am on top of the mountain.
I am not a victim
I am a survivor with style
I am not an orphan
I am a child of a wonderful Father
I am not identified by my dis-ability
I am me .. whatever that looks like today.
I am not afraid to cry
Yet I am not consumed by grief
I am.. He is
That’s all that matters.