I have been on a journey since I was first diagnosed with MS, but particularly for the last 2 years. Here’s a little bit of what has led me to this post!
Stage 1: Denial
When I was first diagnosed, I had never even heard of Multiple Sclerosis so of course the first thing I did was to go home and GDS (my code for Google Dat Sh*&). Bad move because there is a lot of scary stuff out there about every single disease known to man and I mean, who the heck needs to see that stuff when you are newly diagnosed with a life changing illness. I decided that what works for me would be to pretend that I didn’t have anything wrong with me. I decided not to go on any medication which fit right into my denial stage. I would 1/2 jokingly ask my neurologist if I was cured or if they maybe had made a mistake, which she would always gently tell me no. Then, within a few months I had 2 serious relapses where it hit me that this would be my life and if I didn’t take charge or if I wasn’t prepared to listen to my doctors and start some medication, I had no right to bitch and moan about not getting better. I also realized that this is a serious illness and I got scared, really scared. After doing some research and educating myself, I realized that I needed to start some disease modifying medications if I was going to have any quality of life moving forward. That also allowed me to continue with my denial – because it was all going to be good now that I was taking medication, right?? Wrong!! My MS keeps marching on. Since then though, I have told my family time and time again that if I could throw all the diseases there are in a big bowl and choose one, I would take my own. There are so many worse things than an MS diagnosis that I feel if I had to end up with one, I will take my own thank you very much. God willing, I won’t have anything else thrown in with the mix but if I do, I will address it head on and do my best to muddle through it, hopefully skipping the denial stage!
I worked at my dream job for 18 years, but I worked with my MS for 13 of those years – when I think about that, I think what a Rockstar I was, then I get back to reality and realize that the only person that thought that was me. Not because I sucked at my job, but because I didn’t really handle the stress as well as I thought I did. Sure, I could do my job of 18 years (extremely well for the first 10 of those years after my MS diagnosis) but the last 3 years (before my team of doctors told me I needed to stop working) were a real struggle. My neurologist had been telling me for at least 8 years that it was time to slow down while I still had the energy and ability to do the things I wanted to do, but I loved my work and had a tough time letting go until I reached a point where I had no other choice but to give up the job I loved. I’m telling you this not because I want to point out how hard headed and stubborn I am, but to show that this is indeed a journey with many stages and acceptance doesn’t happen all at once. When I worked I didn’t have the energy left at the end of the work day to do anything but sit on the couch and not move for the rest of the night. It took me all weekend to rest and then I was right back at it for Monday morning, getting farther in the hole where my health and energy was concerned. I never broke even with my energy, I just used more and more energy than I was conserving in the evenings and the weekends. I was holding on to something that wasn’t attainable anymore with my MS. And yes, I know that MS is different for everyone, but this is my personal MS journey.
Stage 2 – Anger
So, what the hell was I going to do now? I was mad at my fate, I was mad that this is dictating what I was going to do or not do. I can tell you this, it took me 2 months to stop wondering what was going on at work; who was doing payroll, who was overlooking the booking system, who was hiring staff and organizing room bookings, who was getting the pool ready for the summer, etc. It took me 3 months of pretending I was on vacation before I finally realized that I wasn’t going back. I avoided going to town for 4 months for fear that I would run into someone from work (I didn’t want pity and I didn’t want judgement from people saying that “she looked ok today, she must be faking”, but I realize now how stupid that was). And then I cried – I cried for 5 months and I am not kidding. Isn’t that ridiculous? I was being gifted the time to get my health under control, to get my energy back, to take back my life and figure out how to live with my new normal and I cried? Give me a break. But, I finally figured out that I was grieving. It’s not like grieving the loss of a loved one or the loss of a beloved fur animal, but I was grieving the loss of something that was very important in my life none the less. I mean, you spend more time at work than you do at home interacting with your family or friends. I was grieving the loss of the built in social atmosphere that work provided, I was grieving the loss of feeling important and that I was valuable not only at the workplace but in the community, I was grieving the loss of a schedule (even if I was pulled in a hundred different directions almost all day every day); knowing I needed to be up and ready for work by 7:30 am and that I had a team meeting every Thursday at 9 am, those are things I was going to miss. I was even grieving the busyness of my regular work day, even though it frustrated me daily. I wondered what I would do with all this time on my hands.
Stage 3 – Acceptance
First things first – when I stopped working, I knew that I was beat down, I was flat out exhausted. My doctors told me that it could take years to feel even a little bit better, but they assured me that I would indeed feel better, I had to give it some time and have some faith that they knew what was best for my health. I decided to take the first year of my Long-Term Disability to rest and try to get some energy back and that’s what I did. I didn’t put any pressure on myself to do anything or make any commitments. I slept in, I cooked dinner if I felt like it and didn’t cook if I didn’t feel like it. I napped when needed, sat in the hammock when the weather permitted and took the time to just enjoy some peace, quiet and stillness with no stress involved. I walked my dog around the block when I had the energy to do it and told him that he would have to wait until tomorrow if I didn’t. My doctors and family continued to encourage me and told me that my full-time job now is looking after my health; go golfing they said, take walks, buy a swimming pass and use it, take your supplements & medications, go to your doctor appointments, physio, massage therapy, etc. They reminded me that it was my turn to figure out what works for me.
Stage 4 – Healing
There have been many tears since then; like when I saw my doctor’s notes that said, “she has worked tirelessly and frankly, I am amazed at how long she has worked, but she has finally succumbed to her illness”, receiving my handicap placard and realizing that I will likely never be going back to work. I knew these things to be true, but now I am accepting the limitations that I face today or may face later and I’m ok with them and I am making the most of what I have and can do now.
I am happy to say, that now I have many more smiles than tears! Now, I can accept that the things I deal with daily are a part of my new normal and my journey; brain fog? Not a big deal. Multi-tasking? Probably not today. Short term memory issues? Remind me again about what you told me yesterday? Muscle tightness & spasticity? Get down on your yoga mat and stretch it out. Fatigued? Take a nap. Stabbing pains? It is what it is. Can’t find the right words? Wait long enough and something will come to you. Break a toe because your foot dragged at the wrong time? Wear shoes more often. Look like a drunken soldier when you walk sometimes? Roll with it, you know the truth. Sad you won’t be taking a regular aerobics class? Those were the good ole days, fitness is different now anyway. Can’t play 2nd base in a softball game anymore? You are too old for that anyway lol. Won’t be hiking the West Coast Trail ever again? There are thousands of other hikes around that you can do, go do them! It’s all ok, I did those things when I could but I can’t now, and it’s not the end of the world. What I will be doing is working on my blog, even if it is slowly (this post alone took me over 7 days to write since I can only type for a very brief time before needing a break), I can play golf (using a cart and par 3’s, but I am out there), I can swim laps and take my dog for a walk around the block. I can bake cookies or fine tune my pastry making skills and the very best thing I can do with my newfound energy, is spend some quality time with my family; laughing with the kids, having a water gun fight with the grand kids or just being present when we have them over for dinner. I’m able to smile when I wake up feeling yucky knowing that I can go back to sleep, knowing that I can take a nap when I need it and knowing that I am not letting anyone down when I need to lay low for a day or even for a week or two, those are some things I will gladly do. I hope as time moves on, I can continue making steps forward to a healthier me with a better quality of life, but I am certainly not kidding myself thinking that every day will be a great day. I just need to make every day as great as I can make it even if I get knocked down a little bit with my MS, it’s just part of my journey. I take my cues now from my body (not from my work schedule or if it works to take a day off) and am hearing what it has to say sooner rather than later, I have faith that I have the tools, the knowledge, the energy and the time to make better lifestyle choices. Some of those choices need to be permanent changes and some need to be temporary depending on what I am dealing with, but my family and I are forever grateful to be given this time to spend doing the things that give me joy and give me courage to fight this unpredictable disease. I may have MS, but MS doesn’t have me.