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.

Diagnosis

I was diagnosed with MS in September 2011 at the age of 33 which is common. Most people are diagnosed in their 20s – 40s. I was initially diagnosed with Remitting Relapsing Multiple Sclerosis (RRMS) which is characterized by clearly defined attacks - also called relapses, flare-ups or exacerbations - of worsening neurologic function. These are followed by partial or complete recovery periods (remissions). In retrospect, and hindsight being 20/20, I was experiencing symptoms up to 10 years prior. After my first ‘flare’ in 2001 when my legs couldn’t bear my weight, I experienced episodes of weakness, numbness, and unexplained pain. MS is difficult to diagnose:  There are over 50 symptoms linked to MS, and each person develops symptoms differently. Many of these symptoms mimic problems that occur with other diseases. I was misdiagnosed with Psoriatic Arthritis and was treated by rheumatologists for years – specialists often have tunnel vision and don’t look outside their field. Who knows what an earlier diagnosis may have led to – everything or nothing.

In 2013, my doctor casually said, “Since you are Secondary Progressive…” I must have had an expression of shock on my face because she said, “Now don’t go home and mope about it!” My neurologist is smart and my advocate – she just isn’t the most tactful.  But I don’t need tact. I need intelligence and someone willing to go to bat for me, which she does. So in 2 short years, my diagnosis advanced to Secondary Progressive Multiple Sclerosis (SPMS)  - which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses. Most people who are initially diagnosed with RRMS will eventually transition to SPMS.

There are four main types of MS. RRMS, SPMS, PPMS, and PRMS which you can read more about here.

My MS is unique to me. As Margaret Mead said, “Always remember that you are absolutely unique. Just like everyone else.”

World MS Day

Today is World MS Day: “a day that brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.” I started this blog as a release, to help me cope with my MS.

I think the most important thing for me is to stay connected – be it with family, friends, a support group, or on social media. It’s easy to feel sorry for yourself. I threw myself some pretty grand pity parties. (I still do. MS sucks.) And while you may want to hide out for a while, do it for only a little while. Reach out. I’m a social person and when I stopped going into the office to work from home, I started to feel awfully isolated. I am happily married to an amazing man but I do like to see other faces.

One of the first things I did after my diagnosis was tell my family and friends. I wanted them to know what I was dealing with. I also searched for a support group in my area and found a wonderful one in the East Bay – MS Fight Club. There’s nothing like sharing your story with people who fundamentally understand MS. I learn from them and I hope they learn from me.

My MS affects my mobility so I have an almost constant reminder of my disability but I find it crucial to do things that are unrelated to MS. I go to Pub Trivia, I have game nights, I have potlucks. I am thankful for my friends every day who care about me enough to ask about my health but also treat me the same as I ‘used to be.’

On this World MS Day, let’s think about MS and also forget about it for a while.