Why having an action plan to deal with an MS flare-up is vital…….because flares will happen.
There will be times that your disease is chaotic and you may need to navigate some choppy water and when that happens, you should be prepared. A flare-up, in simple terms, is a period of time when symptoms of a disease or condition become worse or more severe. The intensity and duration of flare-ups can greatly differ from person to person, and even from one episode to the next. For some, a flare-up could last a few hours, while others may struggle with escalated symptoms for days, weeks, or even months. If you have a chronic condition like Multiple Sclerosis (MS), canceling plans last minute can come with the territory. In fact, I canceled plans last week…I canceled plans last month…I didn’t schedule any plans for later this week… all because of a possible flare I’m feeling may be on its way. And that is just one of my coping strategies!
If you have MS or another chronic condition, you know that flares have a way of interfering with your best laid plans. MS is unpredictable. Pain, brain fog, debilitating fatigue, vertigo, migraines, and limited mobility or dexterity can strike out of nowhere and can happen anywhere. Even when in periods of remission, many of us with MS have to plan around their medication schedule, treatment schedule or symptoms schedule – I know I do. For example, even on the days that I am feeling strong, I know I need to do the bulk of my daily activities or chores before 1:00 in the afternoon because after that, my energy is gone. Brain fog, balance and dexterity issues make doing productive things all that more difficult when I’m tired.
If you have a chronic condition, you know that any sense of control you once had is a facade.
It doesn’t matter what my intentions are and even on a good day, MS usually dictates what I am able to do. So, I have come to accept that I live and plan one day at a time and sometimes that doesn’t even work. I don’t look too far ahead and for someone who lived, worked, and operated best within a schedule, this is challenging. In fact, my work even revolved around scheduling, so I did it day in and day out which is awesome for a control freak, but not so awesome for someone who doesn’t have control anymore.
So, here are some things that are in my action plan for when my MS gets the best of me:
I’m Honest with my loved ones about how I’m doing. I get that you don’t want to sound like a whiner, and you don’t want them to fret over you but my family & I have an understanding that I will tell them when something is going on with me health wise. However, sometimes they notice the challenges before I do so we leave space for that communication to happen. We try to keep it real.
I know my own body and pay close attention to what seems to ease my symptoms or make them worse. I keep notes in my phone and have done so since the beginning of my journey. I do this for a couple of reasons — 1) When you are in the midst of a flare, it is easy to think that whatever is going on has just started happening, when in fact it may have been building up for weeks or months. And 2) It helps me see if I’m having a new symptom which could be the start of a relapse that could benefit from some medical treatment (like a course of steroids) or if it’s a flare up of old symptoms and I can manage through it on my own. The tricky thing is that even worsening of old symptoms could be considered a relapse, so it is always best to keep your doctor in the loop. I have had MS for so long, I know the drill. If I have new or worsening symptoms lasting for longer than 2 days, my doctor will start the process of figuring it out and 99% of the time that requires doing blood work and urine samples to be sure I don’t have an infection that could be the culprit. It’s important to treat what is going on and to not pin everything to the disease.
I have become my own manager and CEO – Serving as the day-to-day manager of my own health has helped me gain a sense of control and has improved my quality of life. I follow my treatment plan but am not afraid to switch things up if I need to.
When I notice that I am in a flare up, I embrace self-compassion. I meditate to help me manage the stress of the unknown like, will this be part of my new normal or will this pass quickly? Some helpful apps I use are Insight Timer, YouTube and Chopra. Sometimes I curl up under my electric blanket and watch something mindless on TV and I don’t beat myself up about it, I try to be extra patient with myself. I know that the only person that puts pressure on me to get things done is me, so I get off my case and know that I have the tools to do what is best for my body.
I up the amount of good stuff both in my body and in my mind. I focus on eating better – smoothies, more veggies, etc. I read more positive things – affirmations, feel good stories, etc. I try to manage my emotions because when I am flaring, it is natural to be angry, scared anxious or sad. I acknowledge these emotions, and then I try to put them away after that. I look for the things that give me joy and fill my heart with happiness and I do that if I can. I may stretch or listen to music singing loudly & out of tune. I might wander around my garden and often I can be found in my kitchen which has proven to be one of my happy places.
I try to make smart choices about where I focus my time and energy so I don’t over commit. I know that trying to do too many things at once, or too close together leaves me exhausted, frustrated and vulnerable. Granted, I do this most of the time now, not just when I am flaring but when I am really struggling, I may need to make some additional cuts to what I commit my energy to. I don’t have a lot of room for new friends or hobbies but the ones I do have are amazing. My friends and family accept me where I am at. They know that if I cancel plans, nobody is more disappointed than I am, and they don’t make me feel any worse than I already do. I have had to let go of some relationships that add more stress than support to my life, and I’m ok with it.
I am motivated to get through a flare up or relapse as quickly and painlessly as possible and to lessen the chance for long term damage that I may not recover from. This has given me the space and permission to do what I need to do without feeling guilty or selfish. Even on days that I can’t venture out or even make it to the shower, I still relish in the “little victories” like getting dressed and brushing my teeth. It’s a mind game I like to play with myself.
I ask for help, (a lot of help) and I advocate for myself – This one may seem like a no-brainer, but it’s hard to do especially when you are tired. Asking someone to grab something when they are walking past the kitchen is one thing but asking them to do the grocery shopping, cut your food or wrap the Christmas presents is hard. There are times that as soon as I ask, I feel guilty or, I am boarding the bus to Shame Town. But I get over it and know that when I can do more, I will do more and my life will eventually balance itself out again.
Lastly but possibly most importantly, I have faith & hold onto hope. Research is ongoing, treatments are advancing, and tomorrow might be better than today. Remind yourself of this every day, especially during flare-ups.
Remember, these are my coping strategies and may not work for anyone else so tailor your strategy to what works for you. When the winds of your illness threaten to blow you off course, remember you aren’t alone. In fact, there is a whole tribe of us ready to lend a hand or an oar to help right the boat. MS may have changed the way I sail, but it hasn’t defined me. It just demands I navigate life differently, more carefully and cautiously. But it also has provided me with a unique perspective, an appreciation for the calm moments, and the small victories that others may overlook.
We are capable of weathering the storm.
If you have any tried and true tips to help me weather the flare up storms, I would love to hear them!
Now, I promised to add an amazing recipe for Smoked Burnt Ends Pork Belly. I just love it when our son and his fiancé come to visit not just because we have a chance to visit with them because it feels like those times are too far apart, but also because they have an appreciation for yummy food and encourage me to attempt recipes that I may not attempt in my day to day and this is the happy consequence of their last visit!
This recipe turned out much better than I expected but be forewarned, it is rich! Add some baked beans and Sweet Skillet Cornbread and you will have a meal that everyone will love! https://cookingincowboyboots.blog/2023/02/04/my-2023-words-of-the-year-plus-bean-soup-and-sweet-skillet-cornbread/
If you try it, let me know how it turned out!
Smoked Burnt Ends Pork Belly
- Meat Smoker We use a Bradley standing smoker
- 1 Tin foil disposable pan
- Instant read thermometer I have a Thermopro
- 1/2 Skinless pork belly
- Postal Barbecue Mad Cow seasoning Or your favourite all purpose seasoning mix
- Stubbs Sticky Sweet BBQ Sauce Or your favourite sweet BBQ sauce
- Sweet Chilli Sauce or Red Pepper Jelly
- Dash Sriracha or Franks Red Hot
- Splash Apple cider vinegar
- Additional Apple Cider Vinegar for spritzing if pork belly is drying out
- Prepare your smoker at a temperature of 250° F. We used apple wood pucks in our Bradley Smoker
Pork Belly Prep
- Cube the pork belly into 1” x 1” cubes
- Seasoning the pork belly cubes liberally on all sides with whatever seasoning you are using. Like I mentioned, we have an amazing seasoning rub made right here in the Comox Valley and I can't sing their praises loudly enough!Allow the rub to adhere on all sides for 15 - 30 minutes. You can even do this the day prior and allow them to rest in the fridge.
- Place the pork belly fat-side down on your smokers sheet pan.
Smoking the Pork Belly
- Place the tray in the pre-heated smoker
- Depending on what type of smoker you are using you may want to spritz with apple cider vinegar a couple times during the cook if they are drying out.
Finishing off the Burnt Ends Pork Belly
- Once the pork belly is done in the smoker, place it in the disposable aluminum pan
- Toss with a 2:1 mixture of your favourite BBQ sauce, sweet chilli sauce or red pepper jelly, a dash of sriracha and a splash of apple cider vinegar
- Return the pan (uncovered) to the smoker or your barbecue on low until the pork belly is caramelized to your liking
- This is rich, but oh so yummy! ENJOY!