“Believe in yourself, take on your challenges, dig deep within yourself to conquer fears. Never let anyone bring you down. You got to keep going.”
~ Chantal Sutherland
As many of you already know, I am very physically active as a means to manage my MS symptoms, especially pain and fatigue and cognitive symptoms. A prominent part of this activity is my synchronized swimming. I love it. It is a part of who I am. The freedom in the water is incredible, and includes the feeling of personal power knowing that I can be totally free in the water.
This year, I set a goal once again to swim with a team in synchronized swimming, and strive for excellence. So, how does a person with MS prepare for a synchronized swimming event with her team – especially when her MS is flaring up? That is a really good question.
This season, I began swimming with a group of women who rapidly became good friends, and huge supports. We came together by joining the Halifax Aqua Nova Synchro club, with amazing coaches (Kaitlin and Brooklyn). We all came from different backgrounds, with ages ranging from 18 to 55 years, and differing levels of expertise ranging from zero to 100. The two things we all had in common? A good sense of humour, and a desire to move and be active in the water.
We focussed our energies on a goal of performing a Masters Recreational routine at the April 2015 Nova Scotia provincials competition. We swam 3 times per week…. well, except for the weeks that we were literally snowed in by multiple blizzards and feet and feet of snow. (That is for another story…)
As many people with MS have experienced, the months of February to May can often be more difficult for us, with MS symptoms becoming more difficult to manage with the lingering colder and darker days. This has always been true for me… most of my worst flare-ups and exacerbations over the years have occurred during the spring months.
This season, I could feel the warning signs of an impending MS crash increasing since January, with increasing MS fatigue and pain flare-ups; increasing scenarios of evening and weekends and days gone as I must submit to the MS fatigue and sleep. As April approach, I knew that for me to be able to succeed in my swim event goal, I would need to take some time off. So I wisely scheduled the week off before the swim event. Unfortunately, I waited a bit too long, and the last day before my week off, the MS fatigue hit hard and strong, knocking me to my knees. (All I can say is thank goodness for great colleagues at work when my MS cog fog hits and my brain and mouth cannot connect!)
So just a week before the competition, I went down with an MS crash, fatigue and pain knocking me to my knees. It looked something like this:
- Thursday: Fatigue hits hard by afternoon. Cog Fog maxed. I cannot find words in either english nor french. But the long weekend is hours away…hanging on with the help of understanding colleagues! A bit worried that this will affect my ability to perform the synchro routine the following weekend, but i am taking the week off, so all should be fine. I hope.
- Friday: first day of long weekend. I sleep in until 930AM. After a small breakfast, i am exhausted, in pain, and back in bed by 11AM. I wake up around 6PM, in time for dinner. No appetite so just nibbled. By 9PM, I am exhausted again (resting on the couch is SOOO tiring!). Back to bed for the night.
- Saturday: Woke 9AM. Went with hubby to do food shopping. Back in bed by 1130AM. Slept until 5PM. Back in bed, completely exhausted by 930PM.
- Sunday: Up at 7AM. No practice because it is a holiday and everything is closed – Whew. I would not have been able to go anyway. Back in bed, utterly exhausted by 9AM. Awake at Noon. Had family over for holiday dinner – then collapsed back in bed at 830PM once everyone left, too tired to think or read. (There was no way I was going to miss a family holiday dinner so I pushed myself.)
- Monday: awake by about 8AM. Gotta move! Everything hurts from just sleeping for so long. Spasticity awful. Tried a gentle walk and yoga sequence. Wiped out by it, so back to bed at 11AM for another nap. Awake by 430PM. Back in bed by 9PM. Starting to worry that this is going to complicate my swimming goal because the fatigue is still so bad.
- Tuesday: Fatigue remains – not letting go. Napped from noon to 5PM. Went to swim practice despite fatigue, knowing that the movement will help the pain, and so hopefully help the fatigue too. My teams (my girls) is a fantastic support for me – physically, emotionally, mentally. They accept me as I am – and laugh with me at my cog fog that causes me to forget sections of the routine repeatedly and unpredictably. Their laughter and smiles and encouragement keep me going and raise my spirits.
- Wednesday: Slept from noon to 5PM again. Did some very gentle land exercise, then right to bed. But I am feeling like my head is a bit clearer, so maybe things are letting up?
- Thursday: Only needed a 3.5 hour nap today!! Yay! Swim practice was ok – but i am definitely weaker than normal, and keep forgetting chunks of the routine due to the MS cog fog. But ironically, this makes it easier for all of the team to smile, as we all laugh ourselves. (As the coach says: “Smile – look like you are having fun!”)
- Friday: rest day. I am exhausted from the practice the night before and everything hurts…muscles, joints, head. It wouldn’t normally, but when I am in an MS flare-up like this, pain and fatigue take over even the simple motions. Hoping like heck that if i sleep and rest, i will be fine for the swim event the next day. I hit the sheets for another nap. But my body only needed a 2.5 hour nap. My mind seems clearer so I am hoping that it means the fatigue is finally starting to let go somewhat. Things are looking up! (Gosh, I hope it continues to improve…)
- Saturday: 730AM wake up. Swim event day! I feel better than I have all week, and I am excited. I am gonna do this no matter what! (I can collapse later…) My main worry…that the cog fog will hit at the worst time and i will forget key parts of the routine. I know I will be wiped out afterwards, but if i keep things calm beforehand, i can hopefully keep the fatigue away for a bit…
I read what I have written above as, and it sounds so mild to me. What’s the big deal? It doesn’t sound like a big deal really, does it? But when the fatigue, pain, and cog fog hit…it IS a big deal. It feels like you are trying to move through mud, and think under the influence of heavy medications. And the impact on managing day to day life is harsh at times – especially when it comes to giving up on any activities that make life enjoyable and balanced.
My girls, my team, supported me through that – all of it. No matter how i performed, it was ok with them. Cog fog? That gives me a good basis for comedic moments. Laughter is good. Fatigue? I move slower, more gently, and rest more. It’s ok by them. Pain? The movement itself helps relieve the pain. Life balance? Being with my girls and laughing with them – that gives me a key ingredient to maintaining a good life balance.
The results? Take a look for yourself. We had fun, the day was fantastic, and we have memories that will last, with a number of firsts for many of the team.
WE conquer MS… together. (Thank you, my Breathless Divas. Do a little strut, strut!!!!! )
“Perspective is everything when you are experiencing the challenges of life.” ~
Joni Eareckson Tada