As long as you make an identity for yourself out of pain, you cannot be free of it.” ~Eckhart Tolle

Over the years, I’ve slowly and painfully come to realize that if I’m going to live happily, I would need to come to terms with this illness that isn’t going anywhere…..ever!  It has taken me 12 long years to figure that out and it has been a process.  Living with a chronic illness isn’t easy, or fun, or comfortable but what if I not only accepted my illness, but rather embraced it as if it was a friend? Sounds ridiculous, but you get my drift.  Never in a gazillion years will my MS be my friend, but what if we worked together instead of against each other?  What a great idea!! I just need to turn that idea into a reality, I’m getting there I think!

What is a Chronic Illness? A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than three months. Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and Multiple Sclerosis.  

So, there it is in a nutshell.  It’s not going anywhere.

You know, when I was younger I never really had a vision for what my life would look like in my adult years. I knew and had faith that I would end up where I was supposed to be but I had no idea where or what that looked like. If I did have a vision, I know it wouldn’t include having a chronic illness. For someone who others would describe as a little bit stubborn, facing a diagnosis for something that is hanging with me forever despite my best efforts to kick it to the curb, this new reality was a bit hard to swallow. Despite what the world perceives health to be, sometimes no amount of willpower, positive thinking and healthy lifestyle habits will cure or control whatever this is that has joined me on my path through this life.  So, I knew that instead of fighting it and being mad about it, I needed to embrace it in order to create a more balanced, peaceful and healthy life together. Denial was something I have always been good at, but that eventually stopped working too so, in order to find peace with it, I needed to become comfortable with the uncomfortable.

For example – yesterday I was working on this post and writing the recipe for some amazing Red Pepper Jelly so I wanted to put the sizes of the jars I used in the recipe.  Jars were in the kitchen so off I go to get that info. I went into the kitchen and decided I needed to eat some veggies today, so I made a Greek Salad and started some Quinoa to go in the salad.  While I was in the fridge, I realized that I needed to cook the chicken I defrosted yesterday and didn’t eat so I then went outside and started the BBQ.  While I was outside, I decided to do a reading on the hot tub status and determined it needed a packet of shock so I went in the laundry room to get the shock and thought while I’m here I should put a load of laundry in.  I put the chicken on the BBQ, and never shocked the hot tub, but I did sweep the kitchen floor and fed the cat.  After that, I decided to sit down for 10 minutes while the chicken cooked.  Guess what I didn’t do?  That’s right, look at the size of the jars.  That’s my MS brain.  It makes me feel better to know that this happens to everyone though – MS or not!

Another example – After feeding the cat tonight, I struggled for 15 minutes to put the lid back on the can.  After 15 minutes of frustration at my hands and the fact that my hands don’t do what my brain says to, I left it alone for 5 minutes to refocus and I went at it again.  After another 5 minutes, I finally got the lid on.  That’s my body – my reality.  Did I get frustrated? Yes!  Did I get mad at myself?  Yes!  Did I feel sorry for myself?  Yes!  But, I also was able to laugh at myself. Which I consider a step in the right direction.

I need to become comfortable and stop feeling guilty when I use my handicapped thingy, so I can walk safely from the parking lot to the store. In my mind, I am usually coming up with my justifications in case someone gives me a hard time because I “don’t look handicapped”. This was a big one for me because I don’t necessarily feel handicapped (some of the time), but there are times when my body disagrees with my mind. 

I’ve had to become comfortable and stop feeling guilt and shame when I accept or ask for help even though I desperately may need it.  Especially if I am asking for help with something that I have always been able to do easily (like cut up my steak at dinner time).

I have had to become comfortable with my mobility limitations and adjust my life and activity accordingly, but its ok and not the end of the world.  Everybody knows that sh*t happens that is beyond our control and I have accepted what I can and can’t change and I have shaped my own path of a new normal with all of its little bumps and stumbles. In the big scheme of things, it’s not that bad and should it take a turn for the worse, my family and I will figure it out.

It’s easy to be comfortable with yourself when things are going smoothly, but when I have a rough MS day, it’s not so easy to be comfortable. Imagine waking up every morning just as tired as you were when you went to bed. Add some pretty intense pain that feels as if you have been hit by lighting.  And nausea, dizziness, stumbling, and hands and legs that don’t work properly. Imagine living like that every single day. That is the reality for people living with chronic illness and chronic pain. And it has been my reality off and on for nearly 12 years. In my case, luckily those things don’t all happen at once – they take their turns with me, waiting in line patiently so as not to drive me cray cray, which I appreciate because there are many others that have it so much worse than I do.  That is something that is not lost on me, I do NOT take it for granted and I am humbled by their journey.  

I have learned to look for quiet moments where I can reflect on things or just to stop and appreciate the blessings I have been given. Making this time and taking it is the best gift I can give myself as I strive to continue becoming comfortable with the uncomfortable.

My life is anything but uncomfortable. My life is extremely comfortable.  I have a roof over my head, I have a husband who is my rock and my biggest supporter, I have been blessed with 3 amazing children and 5 beautiful grandchildren, I am surrounded by a family that I consider the equivalent of winning The Kentucky Derby (and that is a high honor because you know how I love the races)! I have a life that isn’t perfect, but it is perfect for me and just what I need to navigate the waters of this journey of mine. Every day I am becoming more and more comfortable with the uncomfortable.

Hey, remember back when I first started this post and I mentioned Red Pepper Jelly?  Well, here is the recipe – it is super easy and oh so yummy.  It’s amazing served with cream cheese or brie, actually any old cheese for that matter and it tastes exactly like the $7 store bought jelly, it’s sweet and bright with just a bit of heat.  Having this on hand means that you will be ready for any unexpected guests and it’s a perfect addition to your holiday party and they never need to know how easy it was to make!  

Red Pepper Jelly

• Servings: 12 small 125 ml jars
• Time: 40 mins + 15 cooking time
• Difficulty: Easy
• Print

This easy recipe is perfect for first time canners and is our families favorite appetizer!

Ingredients

• 2 cups coarsely chopped, seeded red bell peppers (about 1 ½ large peppers)
• 1 jalapeno, seeded and chopped
• 2 cups cider vinegar
• 6 cups granulated sugar
• ¼-1/2 tsp crushed red pepper flakes
• 2 pouches (each 3oz/85 mL) liquid pectin 

Directions

1. Prepare canner, jars, and lids – Place 12 – 125 ml jars in large canning pot or Dutch oven (ideally on a rack for easy removal). Add enough water to fill jars to the top and just cover them with water. Bring water to a low simmer (do not boil).
2. In separate sauce pan, cover lids with water and bring to a gentle simmer. Keep lids hot until you need them, then remove with tongs. Wash screw bands with soap and water and rinse thoroughly – do not heat them, you want to be able to handle them.
3. In food processor, purée peppers and 1 cup vinegar until smooth.
4. In large, deep stainless steel pot, combine pepper puree, remaining 1 cup vinegar, sugar, and crushed red pepper flakes. Bring to a boil over high heat (it will bubble up significantly – use your largest pot!) Boil, stirring constantly, for 10 minutes. Stir in pectin and boil hard, stirring constantly, for 1 more minute. Remove from heat and quickly skim off any thick foam.
5. Quick pour hot jelly into hot jars, leaving ¼” headspace. Wipe rims of jars to ensure they are clean. Center lid on jar and screw band on until fingertip tight (don’t over-tighten).
6. Place jars in canner, ensuring they are completely covered with water. Bring to a boil, put lid on canner, and process for 10 minutes. Remove canner lid and turn off heat. Wait 5 minutes, then remove jars, keeping them as straight as possible, to a flat surface where they can sit for 24 hours. Don’t dry them at this point, any water on the tops will evaporate on its own.
7. After 24 hours, check all lids for seal – you should hear them popping quite quickly as they seal, and the lids should not flex when pushed after 24 hours. If any have not sealed, store in the fridge and use within a month. Canned jars are best used within a year. 

Until next time – Enjoy!

Raegan