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Inner Ramblings of a Chronic Illness Warrior

I have been feeling so lost this week. I have been really sick again which always throws my psyche off but I am completely second guessing myself on just about everything. Today I am going to be vulnerable and share the inner workings of my mind in hopes it helps you understand a different aspect of living with illness...

Do I commit more time and money to resistance stretching? On one hand I am afraid it is too much money to spend. On the other hand, if it works then it is totally worth it. But then again - it’s a lot of money to spend and I am trying to work less, not more. The fear of spending money during uncertain times arises and weighs on me a lot but I don’t think it is a completely “valid” fear. I am still bringing in a little money and I do have savings so I think I am safer than I feel. I can feel a difference after every session but at the same time it doesn’t feel like it has an epic overall effect. I have spent a little over $5,000 on it since August and if it wasn’t working at all, then I would not go but I don’t know if the value equates to the cost at this point. I guess I will only know if I try! This week we are bumping it up from two sessions to three and next week we are trying five sessions. My fingers are crossed that it will be a success but at the same time, if it is successful then I need to keep it going as one week isn’t going to cure me. I can’t afford five sessions a week on a regular basis - even twice a week is a tough price to pay… but how much would you pay to be healthy again?!

What the heck am I doing with The Flexibility Guru? I honestly don't know when I will ever host another training or certification. Not posting on Instagram for a few months has decreased my engagement in an epic way and putting energy there doesn't make a ton of sense when I am not trying to host trainings or gain clients. It seems clear that I will not be continuing the space in Falmouth but on the other hand, summer is coming and it may be useful to have the space until the end of summer. My lease ends in May and it makes me feel sad and disappointed to think about shutting it down, I really was hoping to build a home base in Falmouth and haven’t been able to do anything with the space because of my health. Every time I feel like I am getting back on my feet I start promoting it, and then I quickly get swept off my feet and have to hit pause. I am getting a little more comfortable filming videos and have the tools/equipment so I could start creating an online library of exercises, stretches, tutorials, training programs, etc. Should I spend one day focused on those videos and one day focused on Blessed? Where do I put my energy? Should I just hit pause on everything for the next six months and reassess? Can my brain actually hit pause? I honestly have no idea what approach to take. I’m going to have a lot more down time to spend on art - could that be profitable in any way? I am constantly trying to figure out how to make money without my body any more, and I am really struggling to find any valid income despite the time and effort I am spending on trying to figure it all out.

What is going on with my health? Am I chronically ill and this is going to be a lifetime battle? Or am I working towards a full recovery and am going to have a “normal” life again? These are two very different approaches to making life plans. How do you plan when you don’t know which path you are on? Will I eventually reach a point where I give up chasing a full recovery? There were a lot of moments this week where this whole journey felt hopeless. I felt really heartbroken for about four days, truly and deeply heartbroken - there is no other way to describe it. It made me wonder if it’s been three and a half years and I’m still hoping for the best, at what point am I going to open my eyes and accept that this is my life? Finding the balance between hope, optimism, facts and reality is challenging. I am such a planner and goal oriented person that I don’t understand how to live life like this.

I feel ready to commit to the plan my doctor suggested with only doing eight hours of “work” a day whether it be physical or mental, whether it is work, chores, or errands. But if I make that change next week plus the increase in resistance stretching then it isn’t a true test because I am making multiple changes in self care at the same time. But one of the two clients I am seeing is going out of town so my work load is also decreasing and my wake up time is changing from 3:15am to whatever time I naturally wake up - so there are other factors that are going to make a difference next week. But I was so ill this week that I only worked three hours total so having my other client next week will be taxing in it’s own way so I suppose it will still be a valid test, I just need to consider the other factors that are changing too and pay close attention to any changes in symptoms so I can connect the dots appropriately.

I keep asking myself a question this week that I haven’t really thought about before. What would my life look like if I considered healing to be my full time job? Last winter it definitely was a full time job because I couldn't function at all but as soon as I was able to work then I was right back at it pushing my limits. I have always believed this theory - we have 24 hours in a day; if 8 are spent at work, and 8 are spent asleep, then we all have eight hours a day to do what we please. This is truly going to be my schedule for the next six months to an extreme. My eight work hours needs to include absolutely every single responsibility in my life - online work, clients, chores, errands, doctors, acupuncture, resistance stretching, commutes, etc. Ideally I will spend eight hours asleep at night although that rarely happens so I generally have a couple more hours free. So, I truly have a full eight hours to look at healing as a full time job. How would I live my life differently? What would my free time look like? Can I actually follow this plan if I start to see improvement?! Once I have energy and feel good then I automatically spend it and repeat this cycle over and over again. My doctor says if I use my energy to run around then I won’t have any left for healing and that is the mistake I am continually making. I think it is time to finally learn and control myself and allow my body to use any extra energy for healing instead of working towards life goals.

My medical team all agree that I need to stop working, this is nothing new. I was going to take the month of February off but the last week of January I had my first good week in months. Not a good day, a good week! So I decided to maintain what I was doing and the first week of February was good too. Then I started slowly declining each day until I was incapacitated this week and my body forced me to stop working. So the discussion came around again this week to my inability to stop working. I made an interesting connection that may be part of the challenge, although I feel like most people would struggle to give up their career regardless of the specifics. I started this career path partly as a tribute to my father. When he died is when my life turned towards fitness and wellness. Sports were so important to my dad and in addition to his full time job he was also a basketball coach and referee, and baseball umpire. He was always adamant about his physical health throughout his brain cancer and his journey was an inspiration that I wanted to honor in some way that resonated with me. I realized this week that at least part of the reason I don’t want to stop working is because it feels like I have to let go of him, or that I am disappointing him or not honoring him in some weird way. That may seem ridiculous but I’m sure you know that most of our thoughts aren’t completely logical, it’s just a deep inner feeling you can’t even put your finger on sometimes. And this week I felt like I finally put my finger on it. Giving up your career whether temporary or permanent is not as easy as you may think, especially when it is something you are truly passionate about that has deep meaning.

Last year at this time when I was really ill, I told my acupuncturist that I wish I had a babysitter. I had such low energy that I just needed help with the stupidest things - someone to make sure I was walked, watered, fed, and put to bed for naps. I felt like a helpless puppy. As I gained a little strength I realized that if I was going to get better that nobody was actually going to come to my rescue and help me, so I needed to be my own babysitter. I feel like I am at that point again in a different way. I am so tired of this roller coaster! I am living under the assumption that this is chronic and my life right now is as good as it gets. Because of that, I am trying to juggle as many balls as I can because I have passions and dreams I don’t want to give up on. But I think I need to take on one more six month break, look at healing as my full time job, let go of helping others, and do my best to heal once and for all. I am worried I will be disappointed if at the end of the six months I am no further along but I think I need to throw that worry in the garbage. There is no way spending six months fully focused on my healing and self care will not result in learning new things and result in positive personal development. But I think there is another fear underlying that which is if I give this a six month commitment and fully focus on healing - if I am still in the same boat then do I need to give up hope and accept that this is a lifelong battle? I know I need to keep a positive mindset and hope for the best but there are still little whispers of fear and doubt!

Well, welcome to my inner ramblings! I have a feeling many of these thought cycles are common for anyone struggling with illness and I realize even healthy people can have similar challenges bopping around in their heads. The mental warfare of chronic illness is just as difficult as the physical warfare most of the time - well for me at least. I am creating a little video journal of my resistance stretching journey over the next week and will launch it on YouTube Monday, March 2nd with a new blog post too. I will be interested to see what happens! Today I hope you will approach each stranger with loving kindness because you have no idea what inner battle is going on behind those sparkling eyes. Thanks for reading, feel free to comment below <3



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