My prognosis & living with MS

Hi friends. Today’s post is not necessarily the funnest, but it gives you a peek into a different part of my world. I‘ve debated about how to post this, and when to post this and even if I should post it, but here we are. My word for 2024 is Wellness, which ties into my newish reality of living with MS | Multiple Sclerosis.

Some of you might think, “why is she posting about this on a lifestyle blog?”, but since I am the creator, author and motivation behind this little part of the World Wide Web, I thought I would share this piece of me. I want to be my most authentic self here, and although I usually want things pretty, and fun, and interesting, life sometimes can be otherwise.

I hope maybe this relates to some of my readers who also suffer from MS or any other chronic illness and maybe it helps, or inspires or motivates in any kind of way. One of the keys in managing our life journeys is to have support systems to help us along the way. My intent is for this post to actually be uplifting and positive despite the circumstances.

What is Multiple Sclerosis?

According to the National Multiple Sclerosis Society, Multiple Sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

Multiple sclerosis (MS) is a neurological disorder caused by the body’s immune system erroneously attacking myelin, a fatty covering around nerve fibers. The resulting neurological damage can cause a number of MS symptoms, including fatigue, muscle spasms, balance issues, vision problems and much more.

One of the hardest things about MS and probably the most frustrating in managing the disease, is that it does not manifest itself the same way from case to case. It affects everyone differently, from the type of symptoms to the severity of said symptoms to the frequency and strength of the symptoms. The unknown can be very cruel. 

My Multiple Sclerosis diagnosis

Final diagnosis

My current diagnosis was shared with me by my neurologist on November 18, 2021, and my world has been irrevocably changed forever. Although my life has drastically changed, I am very aware that in the big scheme of things my prognosis is not bad. At the moment life is manageable, and I am still self sufficient albeit in an edited fashion.

I cannot walk as well and as far as I use to. I get fatigued frequently. Extreme heat literally makes me wilt. I can’t necessarily jump and run anymore. This one is tricky though, since I am not sure if I’m just scared to do it without the bodily control, or if I actually, just.can.not. You see, my balance and agility are gone. But I am grateful and blessed this happened at this stage of my life. I was able to have my family and be an active mother with my littles without a care in the world.

Initial diagnosis

Rewind to the early 1990s. My first MS diagnosis was when I was in my late twenties. I lost total vision in my right eye, which slowly came back with in a week, starting with my peripheral vision and working itself in, until my vision was back 100%. Based on a brain MRI, a neurologist in New Jersey determined I had MS. I scoffed at the ancient doctor, and my invincible twenty something year old self did not accept the diagnosis or believe it.

I continued my life and never gave it another thought. Fast forward thirty years, and I am forced to think about it. Now I think about it every single day. I’m not sure if it was mind over matter or as my current neurologist said “the disease has been kind to me” or if it was my mother watching over me from above. Whatever it was, I am grateful. I was blessed with so much unhindered time.

The signs

Walking is no longer a no brainer

I can’t say this enough, always listen to your body, and that inner voice inside yourself. In 2014 (yes, that’s ten years ago) I participated in an Avon walk for breast cancer awareness in Santa Barbara, CA. During my training walks for the event was the first time I felt my legs getting “heavy” by the end of the walks. I did not understand what was going on, but no matter what I did I could not move my legs normally until I rested. Regardless, during the walk I was fine, coming in at the front of my pack during the Avon walk, which was 39.3 miles over two days.

Heat is MS’s worst enemy

Another incident , which has stayed clear in my memory bank is a really hot day here in Northern California. It was probably high 90 degrees pushing 100 and my in-laws were coming to visit from the east coast. I was planting my containers on the back patio (you all know how much I love container gardening), and my legs literally nearly buckled underneath me. My legs were weak and the heat just totally overcame me. I have always pushed through and gotten whatever done, done, but on that day, I.just.could.not. I didn’t understand it, I knew something was weird, but once again I did nothing about it and carried on. 

Can’t ignore the signs anymore

The straw that broke the camel’s back. On October 2021, during my daughter’s senior year in high school, I had my break through episode. It was homecoming at the high school and my daughter was performing during the rally with the cheerleading team. It was another hot day (heat is kryptonite for MS patients), and I was able to walk to the high school but once the performance was over and I had to get back downtown to watch the homecoming parade, I could barely walk. I knew something was really wrong. 

That’s my daughter in the middle with her head tilted to the left. One of the main reasons I stay as healthy as I possibly can. Wellness for the win. 

My MS medical protocol

Medication

There are many different types of medication for MS, including oral pills, injections, infusions and more. I am currently on a medicine called Vumerity, which involves taking 2 pills, twice per day. There is no cure for MS. The medicine is intended to hopefully stop the progression of the disease, but not necessarily eradicate it. Many people ask me “is the medicine working?”. The thing is, I don’t really know until I undergo my next MRI, and the doctor can see if there are any new lesions or if existing ones have grown on my brain or spine.

I guess the medicine is working because fortunately there haven’t been any new lesions. The lesions are the demyelination around the nerves, which causes the break down between brain and body. I do feel like some of the symptoms have progressed a bit as far as my physical aptitude, but as long as I mange them appropriately I am ok. 

Maintenance

Following your medical protocol and maintaining a constant follow up plan with your doctor is crucial. The regular MRIs are the only way you can really see if the disease is progressing and the medical protocol is doing its job or if you should try something else. I am resentful I have to take medicine at all, but I very much prefer my pills to injections or infusions, since I know they might be in my future. Right now, I take it one day at a time. 

All the wellness philosophies are fabulous, but they should supplement your medical protocol. Always stay on your medicine and listen to your doctor regardless of what you read, someone else is doing or somebody tells you. Every single MS case is singular, different from all the rest.

Mindfulness

One of the best ways to manage your MS is to be mindful of your triggers. What does this mean? Be aware of what causes a flare up of your symptoms and try to avoid these if possible. My triggers include heat, stress and lack of rest. Some may say, well stress affects everyone, etc. Yes, but stress doesn’t just give me anxiety and loss of sleep now. It affects me physically and causes me to have difficulty walking and moving around.

In order to avoid these flare ups I try to plan ahead and set realistic expectations. In my previous life I was a big procrastinator so I am trying to be mindful of this and be proactive, which minimizes my stress. I attempt to plan more, organize better and have my ducks in a row. I know life many times interferes and can be messy, but every little bit helps. 

Living with Multiple Sclerosis

And although I am very fortunate about how MS has manifested itself in my body throughout my life, I would be lying if I didn’t admit it has drastically changed my lifestyle in the last couple of years since my final diagnosis. BUT at the same time I am very aware how fortunate I am with my MS prognosis.  I continually remind myself and try to remain grateful and hopeful.

Work

Unfortunately I had to leave my work last year since with MS you never know how or when it will manifest itself. Many of you might know I worked at a Home & Garden retail shoppe, which I absolutely loved. You can read about it here {working at Whim House}. The job required some physical work with the outdoor furniture or receiving heavy packages, etc., which I was no longer confident my body could handle. This picture was taken on my last day of work.

Working-out

Unfortunately with the edited or lack of mobility there comes weight gain. I’ve tried to create a work-out routine at home, but it’s not easy. My biggest problem is being consistent, but I will keep trying to make it a way of life. I’ve always enjoyed the class environment whether it’s barre or pilates or yoga, etc. Even step class back in the day, but I am not confident to be in a studio or gym environment anymore so I limit my work-outs to an at home regime. It’s important to maintain my body as limber and mobile as possible.

Wellbeing

Along with maintaining myself as physically fit as possible, it’s important to take care of our mental state of mind as well. Being informed and having a support system around you is super important. My family are my biggest champions plus I’ve joined some support groups on line and a local group, which gets together once per month. This group has really helped me feel “normal” and taught me many things around the disease. I will admit I have become very deliberate about my “friends”. I simply want to surround myself with those who help and understand my new normal.  

Wellness

I have started taking certain supplements to help me keep my body strong and my mind clear. Vitamin D is a big one for me. It has been a huge help with my fatigue. When I was first diagnosed my neurologist prescribed vitamin D, which was a weekly dose. Once she was happy with the vitamin D level in my system she instructed me to just take over the counter vitamin D3 daily. I have noticed a difference. My afternoon naps aren’t a necessity anymore, and I feel like I have more stamina. All the common sense wellness concepts are super important to stay optimally healthy, like drinking more water, drinking less alcohol & soda, meditating & self reflecting daily, procrastinating less & organizing more.

Closing thoughts on living with MS

Wow! I know that was a lot, but I really wanted to share this for a couple of reasons. I am hoping this explains and makes more sense when I write and share certain things here.

One

I hope this helps at least one person who might be struggling with illness. Don’t feel bad about your disease. Dealing with what your ailment | disease brings into your life is big and bad enough. Allow yourself grace and lean on your people. I love when folks say to me, “you don’t look like you have MS”. Hmm, I don’t know what that looks like either.

Two

When I don’t get to a project or something seems to take longer than it should around here, please know it’s because I probably had an MS hurdle to overcome. For example, the dresser project I completed this past summer {an old, shabby dresser refurbished into an outdoor sideboard} took weeks rather than days because there were many hot days I could not work through.

The cause for MS is not really known or definitive. I do know it’s not anything I did or didn’t do, but I do wonder if I had addressed it sooner, if I could have delayed the current progression. At the same time, I am grateful for my good fortune . At the end of the day, I want to live the longest, healthiest life possible for this crew.   

“Health is no valued till sickness comes.”

Thomas Fuller

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sharing @ between naps on the porch