Wild is the Wind

I recently signed up for a 10km jog in Dublin city centre on November 22nd. This is the first organised run that I’ve ever signed up for. And it’s given me some well needed motivation. The jog is called Run in the Dark. So that’s exactly what I did this evening – went for a run just as it got dark. I can’t remember the last time I’ve ran outside after the sun’s gone down. It was fairly nippy out yet I can’t say I’ve ever come back from a run having regretted it. I’ve only ever regretted the missed opportunities.

Initially I planned on running approx. 5km; to the seafront in Clontarf and back. Although once I got going I didn’t want to stop. I didn’t want to do the full 10km (that could wait until the 22nd) but I knew if I ran to the Moai statue (check out my MS Snowflakes blog) and back it works out at 8km. Running there and back is a real achievement for me. I recall back in early 2015 when my MS symptoms were particularly prominent I would walk here and back everyday as I re-gained my confidence in walking and my balance. To now be able to run to somewhere that was once an endeavour to walk to gives me a real sense of accomplishment. I done a circle of the statue as I turned back to run toward home and gave him a little wink as I did; good seeing ya pal 😉 

And then, of course, it hit me BOOM! Naturally with the wind behind me I was always going to run a bit faster than normal. I never questioned it. It wasn’t a blustering wind so I wasn’t too conscious of just how harsh it would be on the way back. So with the wind behind me I was feeling a lot more confident on the outward part of the run than I did on the return. I gave the run toward home my best shot but the lady on my running app (Endomondo) was constantly reminding me every kilometre that I was going slower and slower despite my conscious effort to maintain the same pace as I had before.

It dawned on me that MS is a lot like the wind. What occasionally can be your closest ally fuelling you to reach a goal will, without forewarning, become your arch nemesis. At times it’s right behind you giving you that extra push to reach your destination. Yet in an instance it can change. The very thing that was driving you is now holding you back forcing you to try even harder. And even though you’re trying your hardest you feel like the destination is getting further and further away from you.

I made it home in good time despite the winds attempts to push me back. As I got closer to home (and further away from the seafront) the wind began to subside. When I’m only a short distance from my house I use all the energy I have left to sprint for the remainder of the run. This causes my head to start pumping until I catch my breath again. I find these bursts of energy really uplifting so I always try end a run with a short sprint.

My MS Updates 

With news in July of additional lesions on my brain discovered in my most recent MRI I had to reassess my whole approach to how I’m fighting MS. The medication I was on (Copaxone) had to be discontinued for me. After discussions with my MS nurse and other MSers I decided to move onto Gilenya. One tablet daily.  It doesn’t need to be taken with food or anything like that which is really handy. I had to go to the Mater Institute of Neurology to take my first tablet. The nurse from the pharmaceutical company (Novartis) monitored my heart for the following 6 hours. They monitor it by performing regular ECG’s. All fairly straight forward. The only awkward part was that the nurse had to shave my chest in order to hook me up to the ECG machine. As a small bald guy having a hairy chest is just about my only redeeming manly feature so I wasn’t enthralled at having patches shaven from it. And don’t get me started on the post-shave itchiness. Anyway, all went well and I headed home without any issues. I was told I had to have blood tests every 3 months as Gilenya causes your white blood cell count to dip so they need to be tracked.

I took the new medication at the same time each morning as advised. Initially all was fine. It wasn’t always possible to take it at the exact same time but I tried to be consistent each day. After a couple of weeks, however, I began feeling very fatigued and couldn’t focus. I ended up having to take some time off work to recuperate. I haven’t had many sick days since returning from my diagnosis over two and a half years ago. However, this felt necessary. After a couple of days off and still not feeling any improvement I went to see my doctor. She took bloods and gave me a sick cert for the week. As a result I had to go back to hospital for more blood tests as my white blood cell count was significantly low. Luckily they have since risen slightly but I will be back in a few days to have more blood tests as precaution.

The week off gave me the time I needed to readjust my approach. With MS I have to be very careful not to lounge around too much. Resting is important but too much rest can really increase my fatigue. Tiredness and fatigue are not the same. In my experience a nap can alleviate tiredness whereas it can increase fatigue.  I start taking Gilenya in the nighttime (bang on 8pm) instead of morning with the approval of the Novartis nurse. So far so good although if I didn’t have an alarm set on my phone I’m almost certain I would forget to take it most nights. I’ve also attempted to take on a couple of hobbies.

I first tried yoga. Each morning, before work, on YouTube. Then I went to a few sessions locally. Regrettably, I haven’t stuck to it. Although, I will attempt to make time to give those Downward Dogs another bash at some stage. Yoga’s benefits are too evident for me not to give it another go. I also started ukulele lessons last month. I’ve completed 7 half hour sessions to date. So naturally, I can picture myself up on stage playing all my favourite songs while you All gaze on in amazement. “He’s self thought ya know”,”Some people are just naturally talented”, “And that voice, wow!” … when in reality I’m patting myself on the back for just turning up on time for the lessons let alone learning something. I have to learn to not get ahead of myself. As with anything, the more time you invest in it the better at it you get. Both yoga and ukulele are efforts to have my mind and body thinking and performing in ways they haven’t done before. MS is known to cause (among many many other things) cognitive disfunction and I’m using these both as ways to fight back.

Every time I’ve sat down to write a blog over the last few months I’ve got sidetracked and haven’t got round to completing one. All part of being a new dad and familiarising myself to this new way of life I suppose. I used to have a lot more time to write these but what I’m learning is that time is an investment. There’s no point in rushing to the finish line of a race if you haven’t actually ran the distance. You don’t get anywhere. The older I get the more selective I have to be with my time. Gone are the days and nights of doing nothing but sitting in and staying up late playing Pro Evolution Soccer on the playstation without a second thought of what I did today or what I plan to do tomorrow. Ideally I’d like to be able to recall what I did today and plan specifically what I will do tomorrow. MS tends to tamper with my memory so I’ve started to write things down a lot more. I find this is a good way to reflect, plan and, in some ways, attain a sense of gratification. Setting small achievable goals allows me to build on former glories no matter how miniscule they were.

Nevertheless, will all this assist me in my ongoing battle with MS?

“The answer my friend is blowin’ in the wind” 

 

 

A few links:

https://www.runinthedark.org/dublin/ 

https://keifib.wordpress.com/2016/01/31/ms-snowflakes/ 

https://www.youtube.com/user/yogawithadriene

https://www.webmd.com/heart-disease/electrocardiogram-ekgs

https://www.endomondo.com/home

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