Category Archives: Disability

Deafness, Disability, Exercise, Family, Friends, Low vision, Multiple Sclerosis, Photos, Running, Stories, Visually Impaired

Running with Guides

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A few months ago I signed up for a new-to-me 10k. The entire race event is set up to raise funds and awareness for pulmonary hypertension (PH) and multiple sclerosis (MS), and it offered multiple distance options. The name of the 10k distance was “Melinda’s 10k”, which is my full name so you know I just HAD to sign up. I did not look at the course map, and I had no friends who were running it but I wasn’t worried about it. I would wear my DeafBlind vest and be extra careful, and it would be fine. I signed up, and then forgot all about it.

A month ago I received a message from United in Stride, which is an online database that helps pair blind runners with guides. The company was founded in 2015, so it hasn’t been around for long, but I do believe it’s growing. I signed up with them several years ago, when I realized I was getting serious about running, but at that time there weren’t any guide runners in my area so I just forgot about it. Then comes this message from Allison, who wants to know if I need a guide runner for any upcoming races. At first I told her no, because I had forgotten about Melinda’s 10k, but then immediately came back and said yes, actually I do have a race I need a guide for. She was immediately on board! Not only that, she was eager to run a couple training runs with me, which was a great way for us to get to know each other ahead of the race, and for us to practice running side by side.

Me & Allison before the race. Lots of sun! All smiles.

We ran this race together, and it was a good thing I had her with me. For several reasons, much of the course we were the only ones in sight (or at least in my sight): it was a small-town race, not a lot of 10k participants, not a lot of spectators, and I’m pretty slow so I hang at the back of the “pack”. There were several spots in the course where I could have easily made a wrong turn and gotten lost. I was super grateful to have her with me. I had been hoping to beat my previous 10k PR (personal record) from 2020, but that wasn’t meant to be. Not only was it really warm this day, but my fatigue this past month was pretty gnarly and prevented me from doing the amount of training I needed. I was happy to finish though, and I wasn’t too far off my goal, so I’ve got something to work towards for the next one.

Me & Allison after the race, holding up our medals. Still smiling!

The best part about this for me, what I’m really excited about, is that it opens up more options for racing. Up until now I’ve only ever entertained the idea of running races local to me, where I could easily get a ride from my family or friends, and not have to worry about inconveniencing them. The couple I have done outside of our area, my family and friends graciously took me to because they knew they were important to me, but I’ve run out of those bucket list type races. Now I just want to keep racing for the fun of it. It’s hard to ask someone to bring you to an out-of-town race when there’s nothing in it for them but standing around waiting for you to drag your sweaty ass over the finish line (thank you a million times over to my dear husband who does this without complaint, and is always more than willing to hug me and hold me up at the end, despite my level of stink).

So. All that to say, I am stoked to have yet another running buddy. Allison and I have been talking about what other races we could run together, and I love her enthusiasm. I’m old enough to be her mom, which took some getting used to at first, but I think her energy helps to motivate me so it’s a great thing. She made us matching bracelets that say “Unstoppable”, and I’m looking forward to wearing mine at all our future races.

The finisher’s medal and the bead bracelet Allison made for me.

As I was writing this it occurred to me that I don’t think I ever posted about my race from last month, so I’ll get that one started for you too. It will be another great opportunity to talk about my invaluable guide runners. I couldn’t do this crazy stuff without them!

Books, Disability, Multiple Sclerosis, Stories, Writing

Infusion Day

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Today was my monthly infusion for Tysabri, the drug I take to manage my M.S. and ward off relapses. I don’t generally post about infusion days because they are typically uneventful so there isn’t much to talk about. Today was a little bit different.

Today my nurse had the challenge of some uncooperative veins. I don’t know why this is a thing, and she couldn’t guess why either, but for the last couple IVs and blood draws, my veins have been extremely uncooperative. My nurse tried so hard to get a good “poke” in two different areas of my left arm, but for some reason the pain was just unbearable. She could see I was in pain and my eyes were forming tears. She stopped what she was doing and looked at me with such kindness and compassion. She said she didn’t want to be causing me pain. It looked as though it was hurting her just as much as it was me. She was patient, allowing me to collect myself and slow my breathing as she made strategic suggestions for how we could make this happen. She knows how important these infusions are for my health, and she was determined to make sure I got my medicine one way or another.

The good news is that the third poke, on my right arm, went in with ease and with almost no pain at all. I was so relieved. I can withstand a little poking and prodding at the beginning, but there was no way I would have been able to withstand the previous level of pain for the hour it takes to infuse the medicine. No way. So I am thankful that she worked with me at my pace and didn’t give up trying.

I love my nurses at this infusion center. Love them. I’ve been going there for years and they have become like friends. They know me, and they treat me with care and respect. They are outstanding at their jobs. This young nurse was my angel today. She has gone above and beyond for me on numerous occasions, and today was no exception. I am so thankful for her.

The other thing that was remarkable today was that while I was sitting around waiting for my ride to go home, I started talking with the patient next to me. I had overheard her talking about recent trouble she was having with a doctor, and how she had to stand up for herself in order to be “heard”. Having just finished the (fascinating and horrifying) book, “All In Her Head”, my ears perked up. I politely interrupted and gave her kudos for being the “squeaky wheel” in order to get the care she needed. That sparked further conversation and she shared with me her journey becoming disabled 20 years ago, at the age of 42, being forced to leave a career she loved. Her story was so different from mine in detail, yet in essence there were so many similarities. I was truly intrigued and encouraged by her fighting spirit and positive attitude that I left the infusion center feeling like I couldn’t wipe the smile off my face. I don’t know if I’ll ever see her again, but I hope I do. I don’t think I’ll soon forget her, that’s for sure.

I think the lesson for me today is that I need to keep sharing my stories. It’s people like the lady I met today, that have been through transformative difficulties and are still able to smile and encourage others at the end of the day, that keep us truckin’ along. I pray that I am able to live another 20 years and more, so that I can keep showing people that you can endure hard things and come out the other side stronger. I meet people like this all. the. time. They are everywhere, and you just don’t realize it! Let’s share our stories. Let’s keep encouraging others. We’re in this together, folks. You are not alone.

Cochlear implant, Coffee, Disability, Domestic Engineer, Family, Friends, Grief, Health, Housekeeping, Kids, Multiple Sclerosis

Health Update (Warning: this is a long one)

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I have great news. My fatigue levels have been going steadily down, my left leg has become way more responsive, and as of today, I am feeling zero nerve pain on my back! I can cautiously say I am back to my previous “normal”.

I first noticed the energy levels coming back a few days ago. I had been walking around the house, originally for accomplishing only necessary tasks like using the restroom and drinking coffee. But somehow along the way I realized I was *also* picking things up and putting them away, cleaning small problem areas in various rooms. It was only when my daughter said to me, “you need to sit down”, that I realized I had been doing anything extra. I thought she was telling me to sit down so I wouldn’t spill my coffee (as I often do), but she said it because she noticed I was audibly out of breath from walking up the stairs.  That was the moment it dawned on me. I had been cleaning, and that walk up the stairs to my bedroom was the last straw for my lungs, apparently.

Let me just pause the update right here and share with you the poignant realization that came to me at this time. What dawned on me was this: I am not a lazy person. I do the things that need to be done, when I am able. Even more surprising, I don’t often have to think about it; I just do it. This realization gave me such pause because one of the things I’ve been struggling with over these several weeks of constant fatigue is the feeling like I’m not measuring up because I’m not doing the things I normally do. I was feeling like an unproductive and lazy person. I don’t know why the voices in my head tell me such awful lies, but they do. So while I was happy to have some energy creeping back, I was also sad to think that all that time when I could have been resting peacefully and allowing my body to heal from this wretched attack on my nerves, instead I was beating myself up for not being more productive. I think we like to call this, “stinkin’ thinkin'”, and it’s got to stop.

So I’m putting this here for two reasons. One – so that I can come back to it when those awful thoughts inevitably come back to haunt me and two – so that you can learn from my mistakes and be kinder to yourself as well.

Now back to my health update…

When I realized all these symptoms that had crept up weren’t going away, I had reached out to my neurologist’s office. They ordered lab tests, which all came back normal. They would have liked to see current MRIs to check for active lesions on my brain and spine, but since I have cochlear implants that’s not an option for me. Some newer cochlear implants are safe for certain MRI machines, but not mine. I would have to have them surgically removed first. Not happening, that’s overkill. So, since they couldn’t get updated MRIs, we just moved forward with treating my symptoms. The nurse practitioner talked with me for over an hour in her office, discussing diet, exercise, sleep, stress levels. Through our discussion I think we landed on two possible culprits, poor sleep and high stress.

We’ve addressed my poor sleep quality with a small nightly dose of gabapentin. I have taken this in the past at a higher dose for nerve pain in my legs, but never on a consistent basis. She wanted me to take a small dose every night to let it build up in my system, knowing it would help me sleep but also may help with the nerve pain in my back (the technical term is dysesthesia, if you care to look it up.) The gabapentin did not have a noticeable effect on the dysesthesia. However, it is absolutely improving my sleep quality and I think that has been the #1 factor in the abatement of all my symptoms.

Sleep is an easier fix than the second factor. One of the first questions the neurologist’s assistant had asked me was, “Have you had an increase in stress level?”. Big Fat Sigh. You could say that. I told her we had recently lost a close friend to cancer. Our friend Dave passed away in January, after fighting an aggressive cancer for five months. Five months that felt like both an eternity and a blink of an eye. Dave had been like a brother to us for 25 years. His family is our family. He was only 47, and he’s left behind a beautiful and amazing wife and two grown children. He was my husband’s best friend. His wife Sarah, one of my best friends. His absence is still felt daily in our home.

I shared with Sarah shortly after his passing that I didn’t feel like I had the right to be so sad because he wasn’t MY husband. He wasn’t MY best friend. But she – so graciously and that’s why I love her so much – told me we all had the right to grieve. We all grieve in different ways, and that’s okay.

I didn’t intend for this post to be about anything other than my health update, but it has taken this turn and I’m going with it. What I’m acknowledging is that Dave’s illness and passing was more stressful than I realized. Prior to this I was fortunate to say I hadn’t dealt a whole lot with death. I hadn’t lost a lot of people I was very close with. My immediate family and close friends are all still living. But Dave was close, and I know this because his absence is still felt here in our home. Reminders of him are everywhere. When we were searching for old photos of him for his memorial service, my husband and I joked that we had more pictures of his kids than ours. We have so many great stories, memories of time spent with him. We will never forget him. We are sad, heartbroken, but we know he is now at peace and no longer suffering. And if he were reading this he would say let’s move on Mel, this is depressing.

Okay? Okay. Back to the health update…

So, externally, I can acknowledge that my grief changed the way I was eating, drinking, sleeping, exercising. All the normal, healthy habits I had worked to establish went out the window. And internally, I was holding in a lot of emotional pain. I still am somewhat, but I’m working through all that with prayer, journaling, therapy, connecting with friends and family. My heart is healing.

I have been getting back to my healthy habits, but the reality is that my body tends to delay in its reactions to stress. I am generally a slow processor – “don’t rush me!” – and this translates neurologically as well. In fact, when I had the BIG relapse in 2013 that left me deaf and half blind, it all started one week after I completed my last college class to complete my bachelor’s degree. I had been under a lot of stress, and my body held that in until after it was over. So I think that’s kind of what has been happening now. I was holding in a lot of that stress and grief and when I started to let go of it, my body reacted. Stress and M.S. are a really bad combo. I need to remember that moving forward and be more mindful of my stress levels. Know better, do better. Be kind to yourself, and rest when you need it. That lesson is for both me and you. Do you hear me? It’s for all of us. Shalom, my friends. Shalom.

Books, Disability, Faith, Family, God speaks, Kids, Low vision, Multiple Sclerosis, Stories, Visually Impaired

Learning to sit in the dark

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I recently read a book for book club called Learning to Walk in the Dark by Barbara Brown Taylor. Ever since, I’ve been thinking a lot about the dark, and my relationship to it. When I lost my vision and hearing I became very afraid of the dark. My limited field of vision leaves me wanting more. If I could just get more light in, maybe I could see the whole picture. With more light, maybe I could see it all. But that’s futile wanting. Even with full light, I still can only see fractions. I’ve had extra lighting installed everywhere in my home. Extra lamps in the bedroom, recessed lighting in the living room, under the cabinets in the kitchen. It does help when I’m trying to get work done and need to see specific things. Paperwork, food I’m preparing, the dust on the couch. But it doesn’t fix it. I’m still partially blind.

How long to you feed the longing for something you lost? How long do you entertain the yearning when you know it’s not coming back? Is the frustration worth it? Probably not. When is it time to give up the striving? Probably now.

I’m learning to sit in the dark. I woke this morning to get the kids up for school. I know they are teenagers and should be able to do this for themselves, but I enjoy it. I enjoy being around them in the calm of the morning. I know I’ll miss it when they are gone. This morning when I came downstairs to let the dogs out, I intentionally did not turn on the light in the kitchen. We have under-cabinet lighting, so it wasn’t completely dark. But it wasn’t completely light, either. It was nice. Calm. When I let the dogs outside, out of habit I flicked the outdoor light on and our deck flooded with artificial light. It was harsh, and as I looked out into the yard I noticed the moon hanging low in the sky. It was a near full moon, and it was majestic. So majestic, that I decided I needed to turn off the floodlight and let the moon shine in all its glory. I stood on the deck as the dogs ran around the yard and just absorbed the blend of early morning light and dark.

Normally I would have been trying to conjure up some profound thoughts in response to this moment, but today I just wanted to be. I just wanted to breathe in the morning, thank God for giving me the moon, and let that be enough.  Over ten years into this disability, I am still grieving my losses. I don’t think grief is a checklist to be completed. It ebbs and flows, and it never truly ends. But I am thankful that it has waned, and is not so soul-crushing as it used to be. I am learning. Learning to sit with the dark, look up to the sky for solace, and be okay. Because today, that is enough.

Disability, Exercise, Friends, Health, Low vision, Multiple Sclerosis, Running, Stories, Visually Impaired, Writing

Moving on…

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Wow. I knew I hadn’t posted in awhile but I didn’t realize it’s been nearly two months. I’ve been okay, really. I’ve just been focusing on a lot of other things. And I’ve still been writing in some capacity all along, because I am still the ME who lives and breathes for writing. Writing seems to be one of those things that actually gives me energy. Mental energy mostly, not physically. The running helps with the physical energy. Since it is winter in Michigan, I have struggled to run consistently, because I detest the treadmill, and running outside is neither safe nor desirable. Even when I can bundle up for warmth, I still have the ice and snow to think about. I walk out my front door after a good snowfall and it’s a sea of white, covering potential icy hazards. So I’ve been trying to get to the gym for treadmill running and strength training, but it’s been a bit sporadic.

Also, all the sleeping! With shorter winter days and limited sunlight, I feel like I’m not alone in this. Needing more sleep seems to be the trend, so I’m not blaming the multiple sclerosis for this one, though I do think it’s heightened. I’m definitely needing more sleep than usual. And this year, I’m just accepting that. It’s fine, I’m fine, everything is fine.

We lost a close friend to cancer last month, and that has motivated me to stop wasting time with my memoir. Because he was too young. Life is short and we are not promised tomorrow, so we need to cherish every moment. So I’ve been chugging away at my memoir a little teensy tiny bit every day. All the books I’ve read on writing memoir compare it to training for or running a marathon, which fortunately I’ve done! So I can compare the two, and I honestly believe writing this memoir is proving to be more difficult than training for a marathon. But I also think it will be more rewarding once I’ve completed it.

Writing memoir requires a lot of introspection, self-awareness, and emotional gymnastics. I’m comfortable with this, but it does exhaust me in surprising ways. So I’m learning – again – when I need to take breaks, and giving myself permission to do that. Hi, my name is Mel and I’m a recovering over-achiever. Most nights I try to go to bed with a to-do list for the next day, and very rarely do I tackle everything on the list. The excessive sleeping has been a huge hinderance to that, for sure. Some days I’m writing stories, other days I’m organizing my ideas and brainstorming, and still other days I’m reading about writing. But if I can give the memoir even 15 minutes per day, I’m calling that a win because it’s progress. Snail’s pace progress, but still progress.

So that’s kind of a snapshot of what I’ve been up to. Sleeping, writing, and sporadic exercise. What else, folks? I guess that’s all I’ve got for now, but I wanted to pop my head up and let you know I’m still around, and I’m doing well, overall. I hope the same is true for you. Shalom, my friends. Shalom.

Daily Snippets, Deafness, Deep thoughts, Disability, Family, Friends, Health, Holidays, Low vision, Mental health, Multiple Sclerosis, Nonsense, Running, Stories, Visually Impaired, Writing

Some Friday Ramblings

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**Note, I started this post several days ago and didn’t finish it. I just didn’t feel like I was writing the way that I used to, or would like to, or “should”. All kinds of silly reasons to abandon a post, but whatever. I’ve been trying to hop back into the art of writing that I have loved, on and off, my entire life. After completing that marathon I was exhausted in so many ways and then lots was happening here at home that required my energy and attention, and then Thanksgiving, and on and on with the reasons/excuses for my absence here. I really desire to get back to regular blogging, regular writing. Lots of changes have happened with me over the last two years so I’m hoping “Writing Mel” is still alive here. I believe she is, and we are just dusting her off a bit. Bear with me, por favor. Gracias. Now back to the original post.**

I noticed when I logged onto WordPress today that they had a writing prompt; the question was “what will your life look like in three years?”. Which is interesting to me, because I was just hopping on here to tell you about a discussion I had with my husband recently that was along these lines. We were basically discussing whether we were content with our lives. And if asked that question, I would say that absolutely, I am content. However, if you had asked me 15 years ago if I would have chosen this life for myself, the answer would have been “hell, no.” I would never have chosen to be disabled and unable to work a job. Having multiple sclerosis, being deaf *and* half-blind, simply put – SUCKS. But I’m 10 years into this, and while it’s taken time, I’ve slowly learned to see (not literally, unfortunately lol) and be thankful for the benefits that have come from it. I’ve learned from these struggles. They have made me who I am today, and I love who that is.

I feel like I’m coming into a new season of life. I’m done training for marathons (for the next few years, at least). My kids are teenagers and can feed themselves (and prefer to, actually). The dogs are pretty low maintenance. So now I’m at a point where I’m learning how to rest. I’m learning how to be okay with sitting still. For as long as I can remember, I have had trouble with sitting still. Not that I physically can’t, but that when I do, there is a general unease felt underneath my skin and deep in my spirit. Like I’m “supposed” to be doing something. I’m often noticing my shoulders are hunched up and I need to consciously pull them back down.

I was actually discussing this general unease with a friend the other day, and she expressed how completely opposite she was from me in this regard, and we had a laugh. She seemed like she was saying she rests too much, and finds herself procrastinating. Sounds a bit like we would do well if we came more to the other’s side and met in the middle. But then where would be the fun in that? I love the variety I see in all of my friends and family members. It’s funny to me the things we experience and think are normal for everybody, when really we are all so different in so many ways. It makes life a lot more interesting, and brings us closer together as we support each other in our areas of strength and weakness.

So back to the season of rest. That’s where I am currently. I still have an ongoing list in my head of all the things I want to *do*, but I’m trying to be more kind to myself. While I’ll never regret running that second marathon, I will admit that I made the commitment without full consideration of my limits; physically, mentally, emotionally. So you could say I’m taking a break. Ish. A semi-break. Evaluating what I value most, and then easing those things back in. It feels a little like riding an inner tube on a lazy river. I’m enjoying it so far.

And that, my friends, is a little taste for you of the rambling that goes on in my brain on the daily. You are welcome. See you next time.

Deafness, Disability, Exercise, Faith, Family, Low vision, Multiple Sclerosis, Photos, Running, Stories, Visually Impaired

The countdown continues

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Flat Marathon Mel

And above we have your girl, Flat Marathon Mel. This is basically what I’ll be wearing tomorrow. Unless I change my mind on the way and switch out accessories. I’m going by the forecast so we’ll see if the weather cooperates. It’s looking to be around 50 degrees and dry. The rule of thumb is to dress for 20 degrees warmer because your body heats up while you’re running. I’ve always followed this rile and it works, but it does feel a little like torture in the beginning when you are standing in the cold feeling drastically underdressed. But I know my body, and I heat up quite a bit, maybe more than 20 degrees, so I believe the tank and shorts should be perfect.

I seem to have forgotten why I signed up for this race so I’ll be spending the rest of the night reminding myself. It’s gonna be fun. It’s gonna be worth it. And God has and will give me the strength to keep going when it gets hard. This race represents all of the ways Jesus has healed me physically, mentally, and emotionally over the past 10 years. This one isn’t about proving i can do it. This one is about enjoying the growth process and celebrating the outcomes. This race for me is about proclaiming victory. We can do hard things when Jesus Christ is our strength.

Lord Jesus, please be with me extra close tonight as I pretend to sleep and tomorrow as I pound the pavement for 6 or 7 hours. May you get all the glory for this one. I couldn’t do it without you.

And also thanks to my cousin Zack, who agreed to be my guide runner without hesitation! He enthusiastically agreed and I’m looking forward to our extended time together. This is such a unique opportunity to share. It’s truly a gift, and I’m excited.

Now it’s off to bed folks! Wish me luck!

Daily Snippets, Disability, Visually Impaired

The junk mail monster is messing with me

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Recently I started receiving regular spam email messages – not to my spam inbox, but my regular inbox – alerting me of jobs available in the area. I ignored them for awhile, then recently tried to unsubscribe so we’ll see if that worked. But LinkedIn has since jumped on the bandwagon. I suspect it was because I *finally* logged in and removed my status and long expired credentials. Because I’ve been permanently disabled and out of the job market for 10 years. Seems it was overdue.

But LinkedIn did NOT get the hint. So they are sending me job notices as well, and today they sent me a really juicy one. Payroll specialist for a local company I’ve heard is great to work for. This is a job I would be drooling over if I was even remotely capable of doing it. It still breaks my heart to not be able to work. I loved accounting and I loved working. I still miss it and probably always will. It is my visual impairment mostly that makes it impossible to do the job I used to do. So unless they find a cure to fix my eyes I’m out of the accounting game. And most other things that require seeing. Big Fat Sigh.

Don’t get me wrong. I am happy. Content and perfectly accepting of my life now. I just sometimes miss the old days, or at least parts of it. It’s fine. I’m fine. Everything’s fine! 🙂

Anxiety, Disability, Exercise, Family, Food, Health, Multiple Sclerosis, Photos, Running, Stories

Week 18 marathon training – 7 more days!

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Let’s shake it up and start with the stats. This week I traveled a total of 9.51 miles on my feet and my banked marathon training miles are up to 499.2. If I had just gone for another short walk or run I could have hit 500! Oh well. This week.

So I had leg day at the gym on Sunday with my daughter. She’s been joining me at the gym, which has been a nice change. On weekdays we go after she gets home from school, so we have to walk to the bus stop to take the public bus. Unless we feel like walking the 2.5 miles, which on Tuesday we did not. So I counted the distance walking to and from the bus stop (0.7 mile each way) in my weekly miles because, hey, I used my legs so I figure it counts. If you disagree you can take it up with the manager. We were planning to go again to the gym on Thursday, but it was raining and neither of us felt like walking in that, so we skipped that day.

I’ve been doing my long runs on Saturday, but I had planned on volunteering for a local race Saturday morning. Sunday we had plans with family, so I knew that wasn’t going to be an option. So, I made sure to get my long run of 6 miles in on Friday instead. The weather has been cooling down here in Michigan, finally, so I was able to get my run done in the late afternoon, just before dinner time. It was a tad warm, but nothing like the hot summer days. I don’t miss those one bit. I loved this 6 mile run. I keep saying this, but I felt strong. Fast, even. And when I saw my overall average pace at the end, I realized it wasn’t just an illusion. I was speedy, relatively speaking. I’m not fast compared to a lot of other runners, but this was definitely the fastest I’ve been since I first started running. And the best part is that I wasn’t struggling to breathe, my knees weren’t screaming at me, nothing. Zero issues. I was rocking that sexy pace, Martinus!

I am super excited about this race. The taper has been really nice because I feel like it’s also freed up my brain and spirit to start really engaging more with life around me. To really relax body and soul instead of feeling like a running zombie. It’s still a little weird because you feel like if you’re not running, you are possibly losing fitness, but I know that’s not the case. Millions have gone before me in this endeavor and they swear by the taper. So I’m trusting the process. I’ll do some light running this week, maybe some easy strength exercises, and then Saturday we’ll head to the race Expo to pick up my packet. We’ll hopefully meet up with my cousin Zack, who is my guide runner for this race. We were never able to meet up for a training run together but we’ve talked through everything and I’m sure we’ll do just fine. Once I’m home from the Expo I’ll pack all my stuff, lay out Flat Marathon Mel with my clothes and bib so I can start the visualizing – I’ll take a picture to share with y’all – and then I’ll start the sleepless night before the big day!

Would you like to know what’s on my packing list? In no particular order, this is what I bring for a long race (don’t let anyone tell you running is a low maintenance sport, they are either lying or in denial):

  1. Garmin watch
  2. Cell phone
  3. Arm sleeves (look ridiculous but actually quite useful)
  4. Knee strap
  5. Bandana
  6. Hydration vest
  7. Running belt
  8. Clif Bloks (salted watermelon)
  9. Gu Roctane energy gel (sea salt chocolate)
  10. Protein bar (brand undecided but probably Clif)
  11. Hat
  12. Deaf Blind safety vest
  13. Guide vest for Zack
  14. Contact lenses
  15. Shoes (duh)
  16. Socks
  17. Sport bra
  18. Shorts (or pants depending on the forecast)
  19. Tank top (unless it’s below 40 degrees Fahrenheit I’m wearing a tank. The pits need to breathe)
  20. Deodorant
  21. Gold Bond Friction Defense (to prevent inevitable chafing)

I’m a list gal, tried and true. This list may look long and overwhelming, but it actually puts my mind at ease, because this is how I reassure myself I’m not forgetting anything. I loathe being unprepared. I just get so much anxiety thinking what I would possibly do if I went somewhere without the things I “need”. Yes, I’m addressing this with my therapist. It’s fine. I’m fine, everything’s fine!

In 7 days I’m going to be running another f**king marathon!! And it’s going to be amazing and I’m going to have so much fun. And when I cross that finish line I’ll get that medal and my family will be there to shower me with hugs and donuts (wink wink). Stay tuned, folks! It’s gettin’ real!

Bible Study Fellowship, Disability, Faith, Multiple Sclerosis, Photos, Running, Stories

Week 16 marathon training

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This week was a struggle. For reals. Not only was it my highest fatigue week, but I had appointments all week: neurology, therapy, infusion, and BSF (Bible Study Fellowship). The BSF was really the only one I was looking forward to, but with my fatigue being at such a high level, it was hard to enjoy. Can I just be really honest here? I have begun to forget why I signed up for this marathon. I’m so over it. Sure, it will be rewarding. I’ll be so glad I did it. No regrets. But I’m ready to get this thing done. So with that attitude, I was able to squeeze in some training.

Looking back, I don’t know how I managed to do this, but on Thursday afternoon – after I got home from my Tysabri infusion – I ran 2.5 miles to the local medical lab to get some blood work done, and then on the walk back home I swung by the pharmacy to pick up a prescription. Marathon training, disability style. Who says running is just for the young and healthy? This is tenacity at its finest, folks. Two workouts in one day. I got ‘er done.

Friday I rested, and then Saturday I ran some more. This photo on the right here is of a place I pass on my long runs. I never think to take a picture, but as I’m winding down my marathon training, it seemed like a good idea. This is a helicopter that was used during the Vietnam war and reminds me to be thankful I live in a country where I am free to run. God bless America.

So, since I’m officially tapering in preparation for race day, Saturday’s long run was “only” 12 miles. It’s a bit surreal, still, that ten years ago I was barely walking. And now I’m what? A runner? Able to casually run 12 miles and still be smiling at the end? To be up the next day NOT feeling sore and near-death? I’m fascinated with what the human body is capable of accomplishing. Fascinated that with slow and steady progression, it learns to handle hours of pounding on pavement. I am also astonished at the healing that has happened in my toes, ankle, and knees. And, I think most of all my heart. Oh, my heart. I am stronger than I ever thought I could be. I am ready to kick this marathon’s ass.

This week I traveled a total of 17.32 miles on my feet. Total marathon training miles, including the half marathon, is now 477.46. Three weeks until race day! I’m at the point of the process where I’m struggling to remember why I signed up for this, so I put a picture of myself running a race from last year on my phone’s lock screen. In the photo I’m sporting my bright orange deaf/blind vest so it’s a great reminder of my “why”. Why do I run? Put simply, because I CAN. Also, I could go on and on about how we can do hard things, and one of these weeks I might still do that, but for today we’re just going to leave it right here. I run because I can. Because God gave me the strength and led me to this place, and I’m going to honor Him by not giving up. He sustains me, truly. In life, and in running. All of it.