A Hot MS

So if you’re new here I’m assuming you know someone with MS or you yourself may have MS. Or maybe you are a fellow chronic illness badass with a crap ton going on. Either way, I’m glad you’re here.

I recently visited my new Neurologist and can not tell you how happy I am! Over the moon VIP, listened to everything, had multiple solutions for my problems EXCITED! I finally for the first time in my MS journey feel like I have a team with my best interests at heart. If you have been reading my content and following me for a while, I’m sure you’ve heard the horror stories about my previous experience…being quite a crappy one. 

Towards the end of my neuro appnt I met with his Patient Coordinator and head RN to chat about a few things. I was given a neat packet of useful information. Handouts on how to make your home more “MS” friendly, recipes for anti-inflammatory meals and salads and even handouts on energy conservation. It’s so simple of a gift, yet I’ve never been offered these things. I honestly have learned what I know about MS from this incredible community and from seeking out the most credible resources online and through the MS Community. But…if I was just newly diagnosed and had NO CLUE what I was to do next, this gift of information would be incredibly helpful! 

I wanted to grab the topic of energy conservation right away because for me personally, this is something I struggle with on a daily basis. Not to mention it’s difficult to navigate through when you’re running a business, a home, kids, dog, cooking, cleaning etc. 

Energy with MS is tricky. We need to make the most of the energy we have, make it stretch as long as we can to reduce issues with fatigue. We can manage this more effectively if we take a deeper look into the day to day activities we work through and make some adjustments along the way to make them more “ energy efficient”. 

We have to change the oil, check the breaks, clean the filters and overall maintain the integrity of the vehicle to make sure it’s running smoothly and efficiently. We’re not going to run the heat in the winter with the windows down…right? Though I’ve totally done this. Not going to lie. 

So by looking at your body like a car…we can have a better visualization of how to make these changes to be more energy efficient. We often want to complete a laundry list of things in our day but often at the end of the day we feel like complete and utter crap. I always say to my Hubby after a long da of running around and working that ”I feel like I just got beaten up.” It’s a level of tired many of you may understand. The kinda tired that is deeper than exhaustion. It causes physical pain, soreness, confusion, numbness and more. It’s the “just got the $hit outta us” feeling. 

Figure out the most important things you need to get done that day and start with the most important thing first. Can you look to anyone else in your home to help on the not so important things? Example- Dishwasher being emptied, laundry being folded, baseboards being dusted. Trust me- Kids are willing if you involve them and teach them how to do things the correct way. My 2 kids (who are now 11 & 12) have been doing their own laundry and doing dishwasher emptying since they were 7 & 8. I’m THAT Mom. You use it, you wear it, you dirty it, YOU WASH IT. It’s good to ask for help. 

Consider how much energy you need to complete a task. Gather everything you need and keep it near by before starting your task. Organize your house to have the most used things nearby and easy to get to. Don’t make your life harder for no reason. Keep an energy diary- this I thought was a great idea. Make a list of the things you did that day and on the bottom write how your fatigue was. You can easily look back and review your fatigue vs. your task list. Maybe you’re trying to do to much and your TODO’s need some re-evaluation. And watch what you eat. Sugar, drive thru’s and processed foods are going to make your fatigue a million times worse. So try to keep it as healthy as you can. Nobody’s going to beat you if you have a cheat meal, but try to limit them. 

Don’t be a hero. Slow and steady wins the race. I need to tell myself this often because I have a habit of running like a bat outta hell and then at the end of the day I crash and throw a tantrum. Yup. Ask the Hubby…Spread out your tasks throughout the day or week even, so there’s a steady work flow instead of 3 days of back to back hell. Finish one task before you start another one and for the love of all that is holy, try to get good sleep. Limit your water intake after dinner time, don’t be on your screens right before bed and avoid that ice cream treat at night. Having a regular nighttime routine is going to help so much. I like to make bedtime a whole big deal in my house. Shower (I can’t go to bed dirty), fresh jammies, candle, lotions (lavender or eucalyptus) to reduce stress and give you a sense of calming and of course my CBD nighttime gummy with Melatonin. 

It’s important we listen to the cues our bodies send us and sit down when needed. I often find myself doing this while waiting in long lines at the store. If I’m not using my rollator that day I will usually lean against something to take the pressure off of standing. But if i know I’m going somewhere where there’s a lot of walking involved, I will always have my rollator with me, which has a seat attached to it for resting. Avoid excessive twisting and bending when getting things. Ask for help or re-organize things in your home to make them easier to access. Slide or roll things instead of lifting or holding. Even my laundry basket, I slide that thing. I have a rolling laundry basket from Costco on my radar for when I feel like spending an extra $50. This would be huge and make fuller loads 10X easier. 

Control your breathing by relaxing your shoulders and allow the rise and fall of your stomach as your breath in and out. When you breathe through your nose you take in deeper breaths which engages your lower lungs. When you do this, you are able to pump more oxygen throughout your body. More oxygen= more support for cells which maintains healthy tissue and organ function. HAZA SCIENCE!

I know you want to do it yourself. I know you can! I believe you but stop being a frickin‘ hero and ask for help! Some things you won’t be able to do and that is OK! Maybe you’re vertically challenged like me and can’t reach the top shelf without a step stool. Well, if your vertigo and balance is off that day, getting on a step stool is just dumb. Yah, I said it. Don’t be dumb. Asking for help doesn’t make mean you are less than or dependent. It means you’re using your energy to the best of your advantage. 

You know I live by this statement. I try to approach everything positively. Not to say that I don’t bitch out my own body from time to time. Yes, I do. But I try to put a cap on it. Don’t focus on what you CAN’T do and focus on what you CAN do. Our goal here is to maintain the best quality of life. GET CREATIVE and find new ways of doing the things you love. Think outside the box. 

I love to cook massive crock pot meals on a Sunday and freeze them for the week. This makes dinners so much easier without having to cook a homemade meal nightly. Who the heck wants to do this? Unless cooking is your way of relaxing but for me it really isn’t. It used to be but with so much going on, nightly cooking it’s in my cards. 

Build your recipe collection, consider easy 30 minute meals even if you can. Use adaptive tools when cooking also. I used to be able to sit and chop garlic. Now I would definitely lose a finger or two because my fine motor skills suck. So opt for a food processor to do the work for you or buy jarred garlic instead. You’re not cheating! 

Stay organized while you cook. Have your pots and pans easy to get to. Kitchen utensils in an organizer on your counter so you don’t have to go back and forth to the drawers. Frozen dinners are fine for days you are fatigued. The fam won’t mind! Trust me. We have this insane expectation of what our family considers acceptable. So when it’s a “frozen meal” night we panic thinking everyone will be disappointed. This is usually never the case. They won’t mind! 

When time to clean up, get everyone involved, let dishes soak, load up that dishwasher and use lightweight dishes or throw aways even. 

Are main goal here is to make our energy last as long as we can. Don’t forget to take those “re-charge” breaks every hour if you can. When you start becoming more aware of what’s draining your batteries faster, you can start to reevaluate the way you do things to conserve more energy.