This is a Little Too Personal for my Liking…

We’ve had a lot of you tell us recently you wish we’d get back to sharing our homesteading life via videos on YouTube. And I really do hate that we haven’t been sharing as much recently. I had huge plans to video everything we did and learned on our farm, and to share and grow our Freedom Forest Farm channel this past year. Unfortunately, my plans kind of all fell by the wayside, for a reason we haven’t told most of y’all about. 

My family and I have been dealing with something this past year that has taken some getting used to. And while I still don’t have it fully under control, I feel like I have a better grip on things and I’m ready to get back into making videos and clue y’all in on what’s going on, instead of trying to hide it. 

Perhaps you didn’t notice, but I had to do some heavy editing to our homesteading footage over the past year because when trying to put it all together to share with y’all, my *new* chronic illness was annoyingly obvious to me. I stuttered a lot, lost my train of thought often, said words that did not belong in my sentences at all, winced out in pain, struggled to even walk on some days… I remember editing the video showing our new piglets… I had been sitting on a wood log next to them and when I tried to stand up, I could barely do it. Gosh, it took me so long to edit all of that out of just one video! Not to mention how much pain I’m in while even carrying the camera around and filming different angles. And while all this – and a multitude of other symptoms – were happening, suddenly, I had no clue why. 

I’ve been to the doctor and specialists and the neurologist more times this past year than I can keep count of. I’ve officially been recently diagnosed with fibromyalgia, but I also have a multitude of symptoms of multiple sclerosis (many of which overlap fibro) and a neurologist who pushes meds (with some yucky side effects) rather than do MRIs or a lumbar puncture to rule this out (“let’s just wait and see if the meds make a difference after a few more months“). He also doesn’t discuss how to use nutrition and exercise for treatment, his sole “treatment” is just icky drugs which just puts a band-aid on my symptoms but does nothing to treat the fibromyalgia. My symptoms started just before we left Arizona (I was in the ER just a few days before our move, unable to walk) but really intensified and snowballed into a daily disruption shortly after our move, so it’s been about a year and a half now. This illness continues to be very confusing and frustrating. 

Let me just say, I’m not sharing this for sympathy (it makes me so uncomfortable), but because I’m just so over trying to hide it and over allowing it to interfere with my goals. So, if you see some of my symptoms in our videos from now on, so be it. I’m going to be completely transparent because highlight reels are overrated and real life is messy for all of us, in a variety of ways. Plus, it will cut down SOOOOO much time on editing, ha! Vulnerability feels a bit scary right now, but I’ll get over it.

To let y’all in on a little bit more…

How this chronic illness affects me:

Yesterday, I felt okay. Today, I’m bed-bound with excruciating pain throughout my body. I wake up never knowing if it’ll be a good day or a bad day. Fibromyalgia is more than just physical pain; it’s a constant companion that affects every aspect of life. The unpredictable nature of its symptoms makes planning anything a challenge (probably why I’ve turned into such a home-body).

On the good days, I feel extremely fatigued and some pain. On the bad days, my feet and/or hands go numb, I have painful electric shocks that go through my body, I feel pins and needles in my legs and arms, my legs tremble so badly I can barely walk (which makes walking down the stairs in my house scary), it’s difficult to sit or stand up, I have insomnia, difficulty swallowing, muscle spasms, speech and memory problems (I forget words, I say the wrong words in sentences, my speech is sometimes more slurred than a drunkard, and I do ridiculous things like try to put my folded laundry away in the refrigerator, or get into the passenger side of my vehicle when I’m supposed to drive). I get globus sensation, numbness in the right side of my mouth & jaw, painful tightness around my chest and back, blurry vision with floaters, dizziness, shooting/stabbing/tearing pains in various parts of my body at totally random times. I’m extremely sensitive to hot/cold weather (too cold = my body locks up completely and is in instant intolerable pain, too hot = I’m puking and too dizzy to walk), sometimes my feet get super cold even when kept warm, my right foot cramps and drops on occasion making walking require extra effort. I drop things often, I trip and fall from time to time, I’m super sensitive to sounds and smells, and a slew of other really inconvenient symptoms.

I experience constant pain, fatigue and several of the symptoms I just mentioned on a DAILY basis, but other times I have a “flare-up” and all the other symptoms join the party too. Sometimes these flare-ups will only last a few hours or a day, other times it will last several weeks (or even months). Fun, right?!

My neurologist recently doubled my meds and I became so sick and so dizzy that I couldn’t see or walk. Brent was ready to take me to the ER but I ended up vomiting up the medication (not on purpose) which started to give me some relief. I wake up every morning feeling incredibly nauseous and “hungover” from the meds, the pain is still there, and I really struggle to even get out of bed, hence the frustration.

This is my mobility aid (but at least it’s cute) that I gave in and got because sometimes I just need a little help. I haven’t used it in public much yet because sometimes I can walk totally fine, but then I’ll be sitting in church for an hour (or school for 6 hours) and when I try to stand up, my legs are like “Nah, we don’t wanna work right now homegirl.” So I worry about people thinking “she walked totally fine on her own just a minute ago, why’s she using a cane now?” I feel anxious over having to answer questions or hear comments like “You’re too young to need that thing!” (which is the exact thing someone said to me when they noticed it folded up and in my purse last week). But my teenage son assures me he won’t be embarrassed if I have to use it in public… he probably prefers it to him having to be my crutch on occasion. I’ve completed two half-marathons and one full marathon in recent years and used to enjoy running on a regular basis, so the drastic change of having to carry a cane around in my purse is something I’m having a hard time accepting.

I’ve started light workouts and going on light jogs when I’m able to, but then I pay for it the next day worse than imaginable. The physical therapist I was referred to a few months ago sent me away and refused to do PT with me because I was having a “good day” when he met me. In that quick 3 minutes (in which I wasn’t needing my cane) he determined I didn’t need PT “compared to his other patients” (who had physical disabilities you could see with your eyes). But ohhh, if he would have met me on one of my “bad days” I am sure he would feel like a real jerk for sending me away. Fibromyalgia is something a majority of people – even health care professionals – don’t fully comprehend. Just because you can’t see an illness with your eyes doesn’t mean it’s not there. Even on “good days” I’m in excruciating pain (again, I share this to let you into my world, not for sympathy).

How it affects my husband and kids:

They’ve heard me wince out in pain at times and cry inconsolably other times, which often leads to me having severe panic attacks (and I hate when they see me like that). This involuntary wincing is what gives me anxiety about going out to public places. My family doesn’t completely understand how I’m seemingly okay one minute and not okay the next (I don’t blame them, even I don’t understand this weird illness), but they are trying to. They help me up or help me walk when I need help. They have stepped up to help with a lot around the house and farm on the days I can’t do as much (Mikayla has completely taken on all responsibility with feeding the animals). And they get a good laugh when I mix up my words and my sentences make no sense at all. It’s like a game of who can figure out what mom is saying first! But poor Brent… evenings when I’m trying to fall asleep and mornings when I’m trying to get out of bed are the worst. I try to keep the pain to myself, but I can’t always be quiet about it. He’s incredibly patient with me, and I am grateful for that. We are taking the “in sickness & in health” part of our vows to a whole new level!

How it affects our farm:

Adjusting to my symptoms that are constant and to the ones that cause such a disruption during flare-ups has been challenging. It’s caused me to slow down, a lot, and with some things, hit the pause button completely. I haven’t been able to grow as much food as I wanted. I don’t spend as much time with the animals because even walking out to them takes so much energy most days. So, I do what I can when I can and I hit pause when I need to. My family steps up and helps take on projects around our little farm when possible. Things are moving a lot slower around here, but I’ve come to accept that (which admittedly has been a challenge because I’m the kind of person who’s always on the go or doing something 24/7). We will still accomplish the goals we have for our farm, it’s just going to take a bit longer than we’d hoped. But some good news… I graduated from Clemson’s SC New & Beginner Farmer Program in December!

How it affects my faith:

Slowing down provides more time to spend in God’s word and in prayer. I refuse to complain to Him about the pain and difficulties I experience because despite this, I am still so blessed, so I express my gratitude. I pray for healing and relief from symptoms, but also for acceptance of whatever His will is. When I’m feeling really sick, I focus on His goodness. It helps relieve my anxiety and keeps me from falling back into depression. Our time here on earth is very short, and in heaven, we won’t experience pain or illness, so I’m all good because this is only temporary. I chose contentment over bitterness. 

So, to sum it all up…

I took a break from YouTube because I needed time to adjust to the changes in my health (and we also started homeschooling 3 of our 4 kids, which is time consuming in itself), but I’m going to ease back into it because so many of y’all have said you enjoy us bringing you along our journey through our videos. I honestly didn’t think many people were actually watching, but now I realize how many of you were. And that is incredibly encouraging. So, thank y’all for that!

But at least now I can stop with the heavy editing (which is such a relief because I always dreaded spending hours editing) since I won’t be trying to hide my bad days anymore (although I’ve become really good at hiding how much pain my body is in). I would appreciate prayers for pain relief and finding a doctor who will truly get to the root of my symptoms, and of-course for my family for having to put up with me, but otherwise, thank y’all for simply being present in our lives, even if just by reading my blog or watching our videos. We really appreciate your support and encouragement. It inspires me to push through!

God has given me the most amazing family and friends and I feel extremely blessed!

XOXO, Jalena Dawn