Invisible symptoms

Multiple Sclerosis is sometimes called an “invisible disease” because many symptoms go unnoticed by casual observers, and even by those living with someone with MS.

While I am in a wheelchair, a very visible symptom of my MS, I do experience symptoms not as visually apparent. For example, I often get vision problems and dizziness, as well as memory issues that affect my cognitive function. Somatic issues are also common, including weakness and fatigue, pain, and numbness.

Describing these subtle symptoms to those around you presents its own unique challenge. Just because others cannot see everything I’m going through that doesn’t mean I’m not experiencing life with difficulty.

Fatigue is one of the least understood and most frequent symptoms of MS. Fatigue is a very real symptom, resulting from damage to the nervous system. People often compare my fatigue to whatever they have experienced. But it’s not the same. Describing fatigue as feeling tired does not do it justice. Instead, perhaps comparing it to the feeling of wearing a lead suit might make it easier to understand. Everything is heavy and just moving is almost impossible.

MS fatigue can interfere with one’s daily functioning. It is best described by Spoon Theory – “…the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

Another invisible symptom of MS  I experience is pain – for years it was a common misconception that MS doesn’t cause pain. Pain is a very real symptom and can either be acute or chronic. Pain from MS can be a direct result of damage to the nerves or neurogenic. Or MS pain can be associated with living with disability and its effects – from using a cane or walking aide and the pressure you put on your arms to the pain caused by favoring one leg over the other, just living with MS can cause pain.

While I may look fine, remember that some of the symptoms which have the most impact on my life cannot be seen. Remember the invisible symptoms.

Support: Family

While MS has altered some of the things I’m able to do, and my relationships with others, I am lucky to have a strong, meaningful relationship with my family. But I have learned that there is the potential for MS to have a negative influence on family relationships. While my family has been supportive, I have learned from others that if family members aren’t willing to learn about MS and how it affects the person, or to listen to and respect each other, this can be a great source of tension.

MS is unpredictable. Individuals with MS and their family members may have difficulty anticipating what the next day or week will bring, let alone the distant future. Planning becomes difficult, creating an ongoing need for everyone to stay flexible. For example, instead of making plans to go to the movies, maybe have the family over and rent one.

My family lives in Wisconsin while I live in California. I have lived on the West coast for 15 years so we have gotten used to seeing each other only a few times a year. Since I was diagnosed, those visits have fallen dramatically. MS has disrupted my family's rhythm.  I am not comfortable flying since I no longer walk and airports, let alone airplanes, don’t really cater to the disabled. Unfortunately, that means family has to come to me, which they do. We have adapted and still have fun and good laughs. But adaptation is key. MS changes things for everyone.

Sometimes it has to be all about me.  I may not feel up to certain things. Truly, it’s not you, it’s me. If you ask how I’m doing and I say ‘fine’ or ‘okay’ think about this. My MS means I’m experiencing life with difficulty. A difficulty most can’t understand. I hope everyone gets the respect and care from family that I do. If not, know that strong connections with others are an important ingredient in a fulfilling life.

Support: Groups and Online

Being diagnosed with MS was overwhelming. I was lucky enough to be surrounded by a special group of family and friends who care about me. And while I hate feeling like a burden, relying on my family and friends makes things a lot easier. 

I think my loved ones feel useful if they’re included in my care - even if it’s a small thing like moving a table or grabbing me a drink. Asking for help doesn’t make you less capable. It makes your diagnosis easier to handle so that you can focus on taking care of yourself. 

Unfortunately, only people who have MS really know what it’s like. I was lucky enough to find a support group, MS Fight Club - physically located in the East Bay of the San Francisco Bay Area and accessible anywhere online. Finding this support group, which I joined about six months after I was first diagnosed, was vital to my mental health and understanding of my disease. This diverse support group showed me the reality of MS with humor, perspective, and experience. MS Fight Club has an active online presence via Facebook and Twitter. Support is just a click away. 

If you feel you don’t have anyone to rely on, I urge you to connect with others with MS. They can relate to you like no one else can. Contact your local chapter of the National MS Society or other MS organizations. Search social media sites like Facebook. I found these sites helpful:

Wheelchair Kamikaze – Marc’s blog is amazing. He combines his own experiences with a multitude of information about MS research and news.

Life with Multiple Sclerosis – Travis Gleason gets down to the nitty-gritty of MS all the while maintaining a positive attitude.

You can find more at The Best Multiple Sclerosis Blogs of 2015. 

There are resources out there to help you build a new style of family and support system.

Support: Adam

My husband Adam is pretty great. Ask anyone. Ask him. Ha! We started dating in 1998. At that time, I knew something was not quite right with me physically. I actually told Adam on our first date that I had arthritis (which is what I had been told) because we were walking a lot and I had decided to wear cute shoes instead of practical ones and I needed a rest. He was automatically sympathetic and showed concern the rest of the night. As our relationship grew, he showed even more support. Everyone saw how much he was there for me and I saw and felt it too.

By the time I was diagnosed with MS in 2011 we had been together for 13 years and married for two years. I never once doubted that he would stand by me. I am very lucky to have him and he says he is lucky to have me. We work together to navigate the unpredictable and changing nature of this disease and life together. We know that we must communicate honestly and effectively. We respect one another.

In many ways, Adam has been forced into the caregiver role. I am dependent on him for a lot of things. While this can cause resentment on both sides, it is something we have grown to accept. You have to grow with this disease not against it. That goes for both of us.

That isn’t to say that we don’t have our fair share of disagreements, tears, and even full-blown fights. We are just like normal couples. We also make each other laugh. If you can’t laugh together, you can’t love. I think we work as a couple because we are, at the core, the same couple we were when we started. 

Guilt

When I was first diagnosed with MS I was relieved. I finally had an answer for what I had been dealing with for 10+ years. But when a chronic illness like MS comes into your life and the lives of those around you, it brings with it many emotions.

I remember doing a lot of things when I was first diagnosed. I had a lot of tests to schedule; I had a lot of prescriptions to fill; I had to learn how to give myself an injection. It was a flurry of things to do. Things to do. When I finally had a chance to sit down and let it sink in that I had MS, I was struck with many emotions such as fear, resentment, self-pity, and guilt.

I had always been prone to guilt. Quick to apologize and make things right. Let’s all be friends. But now there is a new guilt to deal with, MS guilt. Feeling guilty because you have MS is ridiculous. But I did and I do.

A lot of my guilt stems from the unpredictable nature of MS. It is so hard to keep a normal schedule when MS symptoms come and go as they please. I also question myself, “Did I do something to cause this disease? Or “Could I have prevented this progression?”

I feel guilty for what I can no longer do, for what I can no longer be. I think about how I was before. My former life. I'm sorry. Remember when I could take the stairs? Remember when I could walk? Remember a year ago? Remember five years ago?  

There. I felt guilty. And I will feel guilty again. I need to feel these things but then I also need to let them go. Sing a few verses of Let it Be and feel the lyrics. I didn’t do this to me. Let it be.

Limitations

One of the greatest challenges of MS is the unpredictability and uncertainty of what is to come. The effects of multiple sclerosis vary based on which part of the brain or spine is damaged, or more specifically where damage to the nerve-protecting myelin has occurred. As a result, symptoms can be radically different from patient to patient. There isn't any typical MS; everyone's MS is unique to them. It's a very difficult disease to understand. But as you live with it, you need to understand your MS.

Since my MS mainly affects my mobility, I have to be aware of accessibility. I have to be more prepared than before. This takes the spontaneity out of going out. I need to know whether the places that I go are handicapped accessible or not. There’s nothing worse than getting somewhere and finding that you can’t enter because of a stair or stoop. I also need to know whether the restrooms are handicapped accessible or not. This small detail to some is of utmost importance to me.

I am lucky to live in a condo that has a ramp and elevator with a courtyard in a neighborhood that is vibrant and active. I also live near BART (Bay Area Rapid Transit) that can get me around town pretty easily (as long as the elevators are working!) I am also fortunate to have friends that understand my limitations and make a point of coming to me and not letting me feel too isolated. As does my husband and family.

Overall though, I think that there's a limited understanding of what it's like to exist in a less-abled, wheelchair-bound, body. This needs to change. Thankfully, Jason DaSilva of AXS (read: access) Map is bringing us a kind of Yelp for people with disabilities. Creating this viewpoint for those without disabilities is crucial to making a change in society. The disability rights movement needs to gain momentum.

I am thankful that my MS has left my mind unimpaired and I can get around in a wheelchair. But it needs to be easier. There is a fight to be had.

What Next?

In some ways a diagnosis of MS was a relief. I finally had an answer to the myriad of symptoms, aches, pains, and “what the hell’s” I was experiencing. But now I had an incurable disease. What do I do next? I was given prescriptions for drugs that would treat symptoms I was experiencing such as spasticity in my legs, bladder issues, and nerve pain. 

The overall issue, however, was what could we do to stop the progression of MS? There are quite a few DMD’s (disease modifying drugs or DMT’s disease modifying therapies) on the market for Remitting Relapsing MS. These seek to reduce the frequency and severity of flares or exacerbations. They range from subcutaneous (under the skin) injections or intramuscular (into the muscle) injections to oral medications to infusions. You can find a full list here. It is up to you and your doctor to decide where you’d like to start. I strongly recommend doing a DMD because progression can be slowed.

I have tried almost every version of a DMD and unfortunately none of them worked for me as I progressed from RR MS to SPMS. There really aren’t any treatments for progressive MS, although research and clinical studies are making advancements. My neurologist and I discussed them and she prescribed 2 for me. Fingers crossed!

My MS progression began with breaking my ankle in 2010. The trauma, along with the sedentary months ahead, brought upon my most serious exacerbation to date. Once my ankle was healed and I was diagnosed, my mobility went downhill. I started using a cane regularly then moved on to forearm crutches and a scooter. I am now in a power wheelchair. I don’t walk anymore. My legs are heavy and my feet are like bricks. I exercise them but need to remind myself that MS is a neurological disease not a muscular one. I sometimes feel that I could have prevented all this. Could I have? My head says no. My heart… well I try not to dwell in the past ('try' being the operative word). Life is ahead of me today.