Maintaining a Social Life with MS
This weekend I had my first major test of my newly discovered MS limitations. While I've maintained a decent social schedule since being diagnosed and starting treatment, typically I'm in complete control of that schedule or have my husband by my side to identify and help manage triggers and acknowledge my limits. This weekend however, I was on my own to experiment with what I can and can't handle: it was bachelorette party time.
I had every intention of talking about how I worked through selecting a treatment option this week, but honestly this topic felt just as important. I think it's scary at first to go into situations you could have previously taken on with the confidence of health; at the same time, you don't want to sit out of life's moments and celebrations just because you have a chronic illness, so I wanted to give some reassurance that it is possible to continue being actively involved in life even if you have MS. I know what you're thinking - lots of partying and staying up late and eating and drinking junk are all horrible ideas for someone with MS. It's true, they absolutely are, which is why I had to sort of get creative this weekend.
This wasn't just any bachelorette party that I could've easily bowed out of; this was my best friend's bachelorette, and I was in charge of planning and hosting it. Not ideal given my current situation, I'm aware, but I was not about to let down one of the most important people in my world, especially when she's been one of the most supportive friends through my MS journey. (And awkward middle school stages, bad boyfriends, college transitions, and my own wedding festivities - she deserved a great weekend with all her closest friends by her side.) When she originally asked me to be her maid of honor, I was not yet diagnosed, (although I was headed in that direction) and I hadn't just lost a parent and taken on new roles within our family business, so I happily took on the MOH job and all that comes with it. Looking back, it probably wasn't in the best interest of my stress level or health to do so, but clearly I pulled it off so it can be done!
If you've never planned a bachelor/bachelorette weekend before, corralling a sizable group of 20-somethings, usually who don't all know each other, and who live all over the country is hard. What's harder is trying to plan and pack for a weekend while taking into consideration alllllllllll of the MS triggers, symptoms, and limitations that could come into play with or without warning. I will admit, most of last week I wasn't that excited for the weekend because I was so stressed about what could happen and how I could manage it; on top of my own concerns, I wanted nothing more than the perfect weekend for my best friend since she had planned an incredible weekend for my bachelorette party last year.
With most of the girls in the party being local, we decided on a mountain weekend away to celebrate our favorite bride-to-be. Travel would be easy, there would be plenty to do, and it wouldn't be quite as expensive (which is always great when every week you're getting a new medical bill for who-knows-what). We were going to go out to some of the mountain town bars, go on a short hike, head to one of the local lakes for a day in the sun, and just enjoy everything that Steamboat Springs has to offer.
Now to a healthy person, this weekend sounds great: the perfect mix of relaxation and fun. However if you have MS and you're reading this, I'm sure you've already made note of a few major red flags. Going out on the town? Sounds hard to follow whatever dietary restrictions keep you feeling good. Drinking? Sounds like a great way to highlight any balance or stability issues as well as trigger other physical symptoms the next day like nausea and chronic pain. Hiking? Good luck taking that on with limited stamina. Day at the lake? Sure, why don't I just sit in a sauna and overheat a little extra while I'm at it. All of this packed in one weekend? Meh, who needs sleep to function and maintain normal cognitive function anyway?
I spent most of last week mulling over all of these issues. How in the world was I going to enthusiastically celebrate one of the most wonderful people in my world, while managing 10 girls and an activity schedule, while potentially feeling horrible myself with all my MS triggers on my plate? Instead of being excited, I was genuinely worried. I didn't want my issues to even be on the bride's mind, so I recruited two of my other close friends who were going to have my back; I reminded them of some of my limitations, and called on them to step into the hostess role if I needed to step back or step out at any point. Most importantly, I recruited them to support my need to not participate in certain things during the weekend. Some of the girls attending I barely knew or hadn't met, so it wasn't fair to assume they'd be immediately understanding of why I wasn't taking shots with the bride or baking in the sun beside them at the lake; I made sure my friends knew they needed to be openly supportive of my choices to not partake in everything and to back me up if there was any resistance to that.
I'm not going to say that the weekend was a total breeze and that it went off as if I don't have MS at all, because the whole point of this blog is to give y'all an honest perspective of life with MS as a 20-something. Friday I made sure to get really hydrated, took preventative ginger-chews to combat potential nausea, and I fit in a Pilates class before we headed out to help mitigate any pain issues in the coming days. I did everything I could think of to help prepare me for the weekend, but it was still a total experiment of how far I could push myself. I wanted to participate obviously, but I also really wanted to feel normal again.
I had a couple beers throughout the afternoon, took a Jell-o shot or two, and laughed and joked around and got glam'd up with the girls as if nothing at all was wrong with me. As I'm sure you saw coming, alcohol = big mistake. For me personally, major changes in my blood sugar levels are a major trigger of my chronic pain symptoms, and in reality, alcohol isn't kind to your body in that regard. I was by no means drunk - I avoided group shots, didn't drink any liquor outside the small amount of vodka in the Jell-o shots, and limited myself to two or three beers over a 5 hour period, but with my personal variety of MS, that was enough. I was in quite a bit of pain - which for me presents itself in my joints and bones, much like the "growing pains" you experienced growing up - before we even made it out the front door. Thinking it was too late anyway, I tried to have a beer with the bride at our first bar, but two sips triggered just enough nausea that it was though my body was saying, "I warned you, cut it out." So that was the end of drinking for me! Fortunately, my close friends new my limitations, and I don't think the girls who didn't know me as well felt comfortable pressuring me to drink, so I could sort of just hang out without much attention on my sobriety among the drinkers. Our bride also took on enough drinking for the both of us, so it ended up being in everyone's best interest that someone wasn't drinking.
By the time we got back to our AirBnB, I was in pain. Real, severe, head to toe, joint and bone pain. While it wasn't all that late and the rest of the girls were ready to continue the party at the house, I had to give in to MS at this point and lay down. This is part of the gig with this disease; sometimes it does need to win out for the sake of your comfort and your ability to function, and that's not necessarily a bad thing. I had to be realistic on Friday night about my limitations and be willing to yield to them; as fun as it probably would have been to stay up with everyone, it wasn't worth giving up the whole next day trying to mediate whatever symptoms were made even worse by even less sleep than I was already going to get. That's the thing with MS, you have to make compromises with yourself sometimes, and that's okay. It's one thing to know your limits, it's another to actually play by the rules they set for the sake of your comfort. I knew at this point sleep and giving my body a rest was what I needed to get through the rest of the weekend.
While I would not wish the hangover the bride had the next morning on my worst enemy, if there was an upside it was that we all had a very slow, restful morning that included a nap. For me, this was an unplanned lifesaver. I may have been among the few who weren't hungover, but I was likely toward the top of the list of people who could've benefited from more sleep so you better believe I took advantage of the extra time to nap. The array of hangovers from the night before also quickly cancelled the hiking plan, so that was one more worry off of my list. When the bride was able to rally, we prepared to head out to the reservoir in the 85 degree heat. (I had hoped the mountains would relieve us of a few more degrees, but I wasn't so lucky.) Now this part of the weekend was what I had worried over, but also prepared for the most. If there was a cooling mechanism in our house, I had packed it. I had a cooling baseball cap, a cooling scarf, cooling wrist bands, a cooling tank top (thanks, Mom!), and extra mini ice packs to fill any of these things should I need them. I also had a very cold mountain lake at my disposal should I really need a body temperature drop. I packed my giant Hydroflask water bottle - which I would totally recommend investing in - filled to the brim with ice and vowed to not touch even a single beer during the day.
Would I recommend you spend five hours outside in summer heat and direct sun if you have heat sensitivities? Absolutely not. Did I survive it because I came prepared and ready to handle it when I had to? Yes I did. If you don't have any cooling gear, I would recommend either making the investment or seeking out programs where you can get them for free; I received my hat, neck scarf, and wrist wraps through the MS Foundation's Cooling Grants Program. While I would have preferred to be back in air conditioning about two hours before we actually were, staying hydrated and using all my ice packs made it possible for me to hang with the rest of the girls and enjoy our afternoon with little to no extra effort. That outing was a perfect experience to remind me that life with MS just takes a little more planning ahead and care than life without it did; it doesn't stop my life, it just changes it in some circumstances.
The rest of the day and evening went off without a hitch; we had snacks at the house and I continued to stick to water, we all got gussied up again and ready to go out with a much more sober bride, and we picked a spot for drinks and then dinner. I stuck to water at the first bar, and fortunately had two DD's staying sober with me (because of my MS-related vision issues I can't comfortably drive at night, which makes me quite literally useless as a DD unless people want to get crazy before 7pm). When we switched spots for dinner, the restaurant had wine on happy hour, which was a game changer. For some strange reason - that I'm sure is explained simply by science that I just know nothing about - wine does not affect me in the way beer or hard liquor does, so you better believe I had a glass to cheers with my favorite bride! As content as I am to stay sober, it was nice to be able to feel like part of the group at dinner, to raise a glass to my best friend, and to finally relax into a situation knowing it wasn't going to leave me feeling like garbage. Now feel free to take a moment to picture the fact that we were at a casual Irish Pub, pretty dressed up, and everyone else was drinking beers, Irish car bombs, and doing blow job shots while I drank red wine with my chicken fingers and french fries. The happy hour menu really was ideal for our group, what can I say?
By the time we got home and I crawled into bed around 2 am, I can't even begin to explain how happy I was to get some sleep, but I wasn't in pain, I hadn't missed out on anything that day because of my MS, and I was just "I never, ever stay up this late anymore" tired as opposed to MS wiped out. It felt good to have felt normal, and it felt even better to know it was possible even on a hectic weekend away without my usual support system. This is by no means scientific evidence of anything MS-related, but sometimes it's just nice to hear that life can go on and continue to be fun and joyful and even good-crazy when you have MS. It takes some adjusting, there's no doubt about that, and it also takes extra planning but you can still participate in the fun things you would have taken on pre-disease. Surround yourself with people who are willing to be respectful of your limitations and life can stay just as fun. You can still go out, you can still be ridiculous with your friends, you can still take on outdoor activities, you can still be social - so cheers to that!
I had every intention of talking about how I worked through selecting a treatment option this week, but honestly this topic felt just as important. I think it's scary at first to go into situations you could have previously taken on with the confidence of health; at the same time, you don't want to sit out of life's moments and celebrations just because you have a chronic illness, so I wanted to give some reassurance that it is possible to continue being actively involved in life even if you have MS. I know what you're thinking - lots of partying and staying up late and eating and drinking junk are all horrible ideas for someone with MS. It's true, they absolutely are, which is why I had to sort of get creative this weekend.
This wasn't just any bachelorette party that I could've easily bowed out of; this was my best friend's bachelorette, and I was in charge of planning and hosting it. Not ideal given my current situation, I'm aware, but I was not about to let down one of the most important people in my world, especially when she's been one of the most supportive friends through my MS journey. (And awkward middle school stages, bad boyfriends, college transitions, and my own wedding festivities - she deserved a great weekend with all her closest friends by her side.) When she originally asked me to be her maid of honor, I was not yet diagnosed, (although I was headed in that direction) and I hadn't just lost a parent and taken on new roles within our family business, so I happily took on the MOH job and all that comes with it. Looking back, it probably wasn't in the best interest of my stress level or health to do so, but clearly I pulled it off so it can be done!
If you've never planned a bachelor/bachelorette weekend before, corralling a sizable group of 20-somethings, usually who don't all know each other, and who live all over the country is hard. What's harder is trying to plan and pack for a weekend while taking into consideration alllllllllll of the MS triggers, symptoms, and limitations that could come into play with or without warning. I will admit, most of last week I wasn't that excited for the weekend because I was so stressed about what could happen and how I could manage it; on top of my own concerns, I wanted nothing more than the perfect weekend for my best friend since she had planned an incredible weekend for my bachelorette party last year.
With most of the girls in the party being local, we decided on a mountain weekend away to celebrate our favorite bride-to-be. Travel would be easy, there would be plenty to do, and it wouldn't be quite as expensive (which is always great when every week you're getting a new medical bill for who-knows-what). We were going to go out to some of the mountain town bars, go on a short hike, head to one of the local lakes for a day in the sun, and just enjoy everything that Steamboat Springs has to offer.
Now to a healthy person, this weekend sounds great: the perfect mix of relaxation and fun. However if you have MS and you're reading this, I'm sure you've already made note of a few major red flags. Going out on the town? Sounds hard to follow whatever dietary restrictions keep you feeling good. Drinking? Sounds like a great way to highlight any balance or stability issues as well as trigger other physical symptoms the next day like nausea and chronic pain. Hiking? Good luck taking that on with limited stamina. Day at the lake? Sure, why don't I just sit in a sauna and overheat a little extra while I'm at it. All of this packed in one weekend? Meh, who needs sleep to function and maintain normal cognitive function anyway?
I spent most of last week mulling over all of these issues. How in the world was I going to enthusiastically celebrate one of the most wonderful people in my world, while managing 10 girls and an activity schedule, while potentially feeling horrible myself with all my MS triggers on my plate? Instead of being excited, I was genuinely worried. I didn't want my issues to even be on the bride's mind, so I recruited two of my other close friends who were going to have my back; I reminded them of some of my limitations, and called on them to step into the hostess role if I needed to step back or step out at any point. Most importantly, I recruited them to support my need to not participate in certain things during the weekend. Some of the girls attending I barely knew or hadn't met, so it wasn't fair to assume they'd be immediately understanding of why I wasn't taking shots with the bride or baking in the sun beside them at the lake; I made sure my friends knew they needed to be openly supportive of my choices to not partake in everything and to back me up if there was any resistance to that.
I'm not going to say that the weekend was a total breeze and that it went off as if I don't have MS at all, because the whole point of this blog is to give y'all an honest perspective of life with MS as a 20-something. Friday I made sure to get really hydrated, took preventative ginger-chews to combat potential nausea, and I fit in a Pilates class before we headed out to help mitigate any pain issues in the coming days. I did everything I could think of to help prepare me for the weekend, but it was still a total experiment of how far I could push myself. I wanted to participate obviously, but I also really wanted to feel normal again.
I had a couple beers throughout the afternoon, took a Jell-o shot or two, and laughed and joked around and got glam'd up with the girls as if nothing at all was wrong with me. As I'm sure you saw coming, alcohol = big mistake. For me personally, major changes in my blood sugar levels are a major trigger of my chronic pain symptoms, and in reality, alcohol isn't kind to your body in that regard. I was by no means drunk - I avoided group shots, didn't drink any liquor outside the small amount of vodka in the Jell-o shots, and limited myself to two or three beers over a 5 hour period, but with my personal variety of MS, that was enough. I was in quite a bit of pain - which for me presents itself in my joints and bones, much like the "growing pains" you experienced growing up - before we even made it out the front door. Thinking it was too late anyway, I tried to have a beer with the bride at our first bar, but two sips triggered just enough nausea that it was though my body was saying, "I warned you, cut it out." So that was the end of drinking for me! Fortunately, my close friends new my limitations, and I don't think the girls who didn't know me as well felt comfortable pressuring me to drink, so I could sort of just hang out without much attention on my sobriety among the drinkers. Our bride also took on enough drinking for the both of us, so it ended up being in everyone's best interest that someone wasn't drinking.
Would I recommend you spend five hours outside in summer heat and direct sun if you have heat sensitivities? Absolutely not. Did I survive it because I came prepared and ready to handle it when I had to? Yes I did. If you don't have any cooling gear, I would recommend either making the investment or seeking out programs where you can get them for free; I received my hat, neck scarf, and wrist wraps through the MS Foundation's Cooling Grants Program. While I would have preferred to be back in air conditioning about two hours before we actually were, staying hydrated and using all my ice packs made it possible for me to hang with the rest of the girls and enjoy our afternoon with little to no extra effort. That outing was a perfect experience to remind me that life with MS just takes a little more planning ahead and care than life without it did; it doesn't stop my life, it just changes it in some circumstances.
The rest of the day and evening went off without a hitch; we had snacks at the house and I continued to stick to water, we all got gussied up again and ready to go out with a much more sober bride, and we picked a spot for drinks and then dinner. I stuck to water at the first bar, and fortunately had two DD's staying sober with me (because of my MS-related vision issues I can't comfortably drive at night, which makes me quite literally useless as a DD unless people want to get crazy before 7pm). When we switched spots for dinner, the restaurant had wine on happy hour, which was a game changer. For some strange reason - that I'm sure is explained simply by science that I just know nothing about - wine does not affect me in the way beer or hard liquor does, so you better believe I had a glass to cheers with my favorite bride! As content as I am to stay sober, it was nice to be able to feel like part of the group at dinner, to raise a glass to my best friend, and to finally relax into a situation knowing it wasn't going to leave me feeling like garbage. Now feel free to take a moment to picture the fact that we were at a casual Irish Pub, pretty dressed up, and everyone else was drinking beers, Irish car bombs, and doing blow job shots while I drank red wine with my chicken fingers and french fries. The happy hour menu really was ideal for our group, what can I say?
By the time we got home and I crawled into bed around 2 am, I can't even begin to explain how happy I was to get some sleep, but I wasn't in pain, I hadn't missed out on anything that day because of my MS, and I was just "I never, ever stay up this late anymore" tired as opposed to MS wiped out. It felt good to have felt normal, and it felt even better to know it was possible even on a hectic weekend away without my usual support system. This is by no means scientific evidence of anything MS-related, but sometimes it's just nice to hear that life can go on and continue to be fun and joyful and even good-crazy when you have MS. It takes some adjusting, there's no doubt about that, and it also takes extra planning but you can still participate in the fun things you would have taken on pre-disease. Surround yourself with people who are willing to be respectful of your limitations and life can stay just as fun. You can still go out, you can still be ridiculous with your friends, you can still take on outdoor activities, you can still be social - so cheers to that!
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