It’s that time of the year again.  The dreaded disability form, which I have to say causes me some anxiety just thinking about filling it out.  It feels like every year that goes by, I add yet another doctor or issue to the paper. Before long, I’m going to need a small journal to write it all down but  will again do my best.  I’m learning from the last one, this year I am going to take my time and be concise and make sure I explain the powerful impact that MS has on my day to day. 

So, today I thought I would repost what I wrote a year ago but with a few changes to allow for what the last year has looked like for me.

As part of my Disability Claim with my employers LTD carrier, I am required to get various forms filled out, usually by my doctor but this time I was given a form to fill out myself.  A lot of it is basic, but there have been a few changes to my information for the past year.  One of those changes is that I have 2 new specialists to add to my health care team – One of which is a Physiatrist – what’s that you say? Well, a Physiatrist is a physician who treats a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons and whom I see for treatment of my most recent diagnosis of Occipital Neuralgia. The second specialist I have added is an Optho-Neurologist who will now be who I see (apart from regular vision checks), since my recent relapse has added eye issues that are directly related to my MS.   

Again though, the hardest question for me to answer is the one asking me to describe my typical day.  In the past, I have found myself really stumped and honestly annoyed with the whole process. I like to consider myself an optimistic person, but this was a tough one for me and I really had to dig right down to try to put a typical day into perspective for myself last year and I just wanted to finish the form quickly and be done with it…..BUT NOT THIS YEAR. This year, I will say what I should have said last year.  I’m not going to fall into my old habits of fooling myself that everything is perfect because it’s not. It’s hard for me, because even though I know that I am not perfect, I am far from terrible, I am lucky to be in the shape I am in and I am lucky to have the diagnosis I have because if I had to think about how very different my life could be, it scares the hell out of me. However, the reality is that MS is a progressive lifelong disease that I still have  and it’s been a challenging year. I hate to complain, because on the other hand, my life is amazing but I’m just not necessarily physically great all the time.   I have a home to live in, I have the love of my life walking this path with me, I have 6 beautiful grandchildren (and life is slowly coming back to some kind of normalcy from the wonderful world of self isolation and protection from COVID), I have 3 wonderful children and I am surrounded by family and friends that love me and lift me up every single day. But my attitude hasn’t always been like this, especially when I was struggling the last few years of working before going off on disability.

Hearing my Neurologist and family doctor label me as “disabled” hit me like a ton of bricks, and the gravity of my Multiple Sclerosis both overwhelmed and scared me.  At that moment, I felt like a failure—incapable of helping myself or of being a contributor to my own household and life. The idea of being disabled was embarrassing to me. I worried what people would think.  I was worried they would think I was lazy, faking my illness, or they would think that I was undeserving of a disability status, so I kept how horrible I was feeling a secret from nearly everyone, at work and including my own family, the ones that love me the most.  But what I now know is that they knew well before I was ready to accept it myself. 

Back to the form – some of the questions were easy. But if you have MS or any other chronic illness you know that our days aren’t typical, are they? Here was my reply:

Has your medical condition changed in the last year? If so, how? Yes – a steady worsening of multiple sclerosis symptoms. I have been diagnosed with Occipital Neuralgia and had a relapse where the lingering effects lasted for at least 6 months and some of those effects may never go away.  

How often do you see your doctors?  Neurologist, every 6 months unless otherwise necessary.  Family doctor – monthly. Physiatrist every 3-4 months as needed.  Neuro Opthalmologist – as needed for ongoing disease management.

Do you anticipate working in the next 6 – 12 months? No

And then, the big question……..

Describe your daily routine or how you spend your time at present – After waking up, I assess how my body feels and do what I am able to.  Sometimes I can shower but if my balance is really off, that waits for another time or maybe even another day. I attempt making breakfast. I stretch and try to move depending on my level of stiffness and vertigo.  My day is totally dependent on how I feel on an hour to hour basis.  There are odd days I can take a walk but that zaps my energy and is not a possibility in inclement weather, especially cold and ice as I have reduced feeling in my feet.  My arms and legs have altered sensations, pain and weakness.  It is very difficult to say what an average day looks like except to say that I get out of bed and go to bed. I have brain fog and difficulty multi-tasking.  I currently have a housekeeper and someone who looks after yard work.  We have done renovations in our home to accommodate for my disability both currently and future possibilities.

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That was then…….this is now.  This is what my response will be this time around:

I do not have “typical days” anymore. I have low, medium, or high pain days or spasticity days. I have functioning, semi-functioning or debilitating days. With Multiple Sclerosis, I am never able to fully escape the disease as its symptoms are an everyday occurrence. My day depends on how intense the pain (and now I can add intense headaches with pin point nerve pain), weakness, brain fog, fatigue, itchiness, balance issues, vertigo, heavy limbs, spasticity, pins and needles are and for how long. I adjust my schedule throughout the day depending on the intensity of these symptoms which I experience daily on varying levels. One day I am fully capable of a task while the next day I struggle with generally simple things like brushing my teeth, getting dressed or making dinner. And these challenged have only worsened since my most recent relapse.

There are days I wake up, (usually early as sleep is continually disrupted due to pain and or muscle cramps and spasticity), with a deficit of energy because I used up too much the previous day and I know that this is the best I am going to feel all day. I usually need to sit for a while once I get up to gage how the pain, spasticity and vertigo is, then I try to make myself some breakfast. My first alarm goes off about an hour after I wake up reminding me to take my first handful of medication, both prescribed and vitamins / supplements, just so I can maintain a manageable level of neuropathic pain and muscle tightness. I generally use this time in the morning to read some of the blogs I follow and check the daily news while gorging on Food Network or the Cooking Channel. I may take some time to journal or work on my blog (10 -20 minutes at a time are about all I can handle as my vision gets blurry and pain and discomfort makes any more than that unrealistic), but I try to do a little as writing has become something that is helpful to me in dealing with my illness. 

On a good day, I am able to run some errands, which I usually break up throughout the week in order to not increase my symptoms or use up too much energy in one day (and to be honest, I am doing more and more curbside pickup these days). The grocery store and laundry are two tasks that generally wear me down.  My next alarm goes off at lunchtime for more medications.

While eating healthy is part of my life now and I love to cook, making dinner can still be challenging some days. I tend to do meal prep earlier in the day because by the time 2:00 comes around, I am running on very little energy so pre-planning is a must if I am going to continue to eat healthy. Some days I have to tell my husband that it’s a fend for yourself kind of night as I haven’t summoned enough energy to even prep things for dinner. I usually spend the evening watching TV, however, my pain and muscle tightness increases, and I become fidgety. At 7:30 pm, I take another handful of medication to prevent worsening break through neuropathic pain, overactive bladder and increasing muscle tightness throughout the night.

Some of the medications I take cause a wide range of side effects that I try to manage as well, including making me sleepy. So, naps, rest and recharging times are a must.

While I try to get outside everyday, I spend a good portion of my time at my house. When I do go out, I have to plan it out. Will there be a lot of loud noise, too many people, extreme heat or other triggers that will make my MS symptoms worse? I find that I have lost some of my confidence when it comes to being alone. I can get turned around easily and then panic sets in. Getting turned around is embarrassing. I feel stupid and ridiculous both at being confused but more so about the fact that I am panicking and that is someone that I have never been, it’s extremely frustrating and embarrassing.  So, whatever my errand is, I know I need to build in extra time because any task now can take me twice as long to complete. When my abilities change so dramatically from one day to the next, I have ended up questioning myself.  I know none of this is my fault, but deep down I can’t help but wonder if maybe somehow it is.

So, while I continue to try to keep my health manageable, I have days that are really hard. I have moments where I wish I would just wake up feeling refreshed. That I had less symptoms so I can do the things I want to do, the things I used to be able to do. There are many times that I fake it until I make it. Even on the good days I have to be careful I don’t overdo it because it can send me into a relapse or flare up and that’s scary.  I’m tired of saying tomorrow I will tackle this task and then when tomorrow rolls around, I again don’t feel up to it. So usually, I just push through and do it anyway.

Bottom line is that having Multiple Sclerosis sucks. It sucked when I was first diagnosed 16 years ago and it sucks today as a 56-year-old woman. That’s the brutal truth. It can suck, but it is here to stay so I do my best to embrace it and meet it head on. That’s the best approach for me at this time  

THAT is what my form will say this time around

I’m not writing this because I am having a pity party.  I am writing it in hopes that it may help someone else who may be struggling with their own identity while facing a chronic illness. I am so happy with my life, even with Multiple Sclerosis. especially with my Multiple Sclerosis, because I have found silver linings in my disease that would never have happened if I wasn’t presented with the opportunity to slow it down and take a good long look at my myself and my priorities. I can’t even say it isn’t what I expected my life to be because I am married to the man I always dreamed of marrying and I have the family that I always dreamed I would have. I will continue to work hard on having a positive outlook. One thing I didn’t expect when I was diagnosed with MS all those years ago, is that I would become empowered and for that, I am forever grateful. Living with my limitations has taught me to judge others less and to have more compassion for people.  There are people who don’t look sick or who have serious family problems, have had traumatic experiences in their lives, there are those with other problems or who have issues that they hold close to their chests and don’t tell anyone about and struggle alone in silence.  Don’t you think this world can stand to have a few more people with empathy out there?

How about we all be the change we want to see in this world?

So today I am just going to breathe deeply and muster up the courage to find the words needed to properly convey what is on my heart to say.