Saturday, April 8, 2017

Having Mono at 33 With Chronic Conditions, Grace and Frankie, Celebrating LIFE, and 'Gettin' To Livin''




I knew something wasn't right. In February our family had a bought with Strep. Of course, being Strep, all of us were incredibly run down. My daughter and I seemed to be specifically exhausted. I thought it was just because we were taking longer to heal. But then, my normally bouncy Extrovert would often come up to me during the day and lean her head against my chest and just stand there. She would want extra snuggles. She asked to lie down...which was a shocker to me because this gal stopped napping at nine months old. She is the one who never wants to sleep for fear of missing out. She was the one who originally gave me sleep deprivation and even when she's sick she rarely naps. Something was very wrong.

A friend mentioned Mono and I thought about it, but didn't want to add another "diagnosis" to our seemingly "collector conditions." But after a month of her being off and complications of more strep and constant sore voice and throat for her, I took her in. The first doctor in Emerg swabbed her for yet another bought of Strep (even though she finished antibiotics for the first four weeks ago) but didn't test for Mono because they said it was unlikely. So I booked her into the clinic. We were at emergency because I thought her throat was closing up - it was so visibly swollen...so I didn't push blood tests at that time. At the clinic I made my argument and as an afterthought I asked to also be tested. The doctor said I looked pretty good for someone who would have low Ferritin AND Mono but she allowed me to be tested anyway. It is typical for me to present symptoms differently. I can look like I am functioning well and be very sick.

The next day we were visiting the therapist and he gave us our results with, "Your family is always full of surprises." Both of us were positive for Mono and my Ferritin had dropped one more point to a three. My first thought was, "Of course it's positive...of course I have Mono...why not? I seem to have everything else!" Followed by a deep urge to laugh (which I did later.) He asked if I had been feeling especially exhausted and I shrugged and said, "Exhaustion is my normal...not too much more than usual..." Because I am so used to being tired, and every day is hard for me because of this fact, I don't like to mention it in daily conversation. Everyone says they are tired. I didn't want to join the masses of complaining even if I had a legit reason. I want to LIVE my life. I know I make generally good choices to combat being busy ect. so I am not one of those people who are tired because I over schedule myself. I am tired because of my bodily conditions and I dislike drawing attention to this fact unless I need support or am writing a blog post. He replied to my daily tired statement, "With a ferritin of three being tired is pretty typical." But then as my thoughts caught up to me I realized the ridiculousness of my statement. I was WIPED. But technically this therapy appointment was not for me, so I moved on and concentrated on my hubby.

I can't believe I am 33 and have Mono. I have never had it before actually which is a shocker considering the fact that my body tends to be a breeding ground for all things depleting. Looking back on the last month it makes a lot of sense. I forgot that every night I felt like I was dying. I was scared to go to sleep because I thought I may never wake up and I wasn't sure I wanted to because sleep seemed like the most beautiful concept in the world. I also had these "hot flashes." I thought my hormones were going crazy. Turns out these were night sweats and typical with Mono. I am a person who is always cold. I am never hot, so this was a new fresh hell for me. At night I would strip off layers but in the morning I would, once again, wake up freezing. I was always so thirsty, especially at night when I had the fevers and I would constantly wake to headaches and nightmares. I took my temperature the other night and found out that indeed, I was also suffering fevers, which in hindsight explains a lot from last month. I wish I knew then...
(I also kept wondering why I had puffy eyes like in this picture-turns out they are also a symptom.)

Then there was the need to nap. I am like my daughter. I only nap if I just had a baby, have the flu or if I have a very bad time of the month (with low ferritin the heavy bleeding does me in.) I was napping after city trips and falling asleep when I would lie down on the couch...and the sleep felt like it was never enough. When the annual time/ clocks changed, I thought I was sleeping until eleven because I couldn't adjust. Yet, this sleep didn't feel like enough either. I felt like a teen again. I thought it was odd that I was sleeping the mornings away in the Spring, when usually that is when I prefer to wake earlier. My neck was also constantly swollen but I thought it was my lower thyroid nodule somehow affecting the lymph system higher up. My upper left abdomen was constantly hurting (which I brushed off as my annoying Lyme stuff) and my muscles were even more sore than usual after a walk ( again I thought it could be another Lyme flare.)

The problem with having chronic conditions, is that when you are sick it is tough to know if it should just be brushed off as a flare up or be checked for something additional or a run of the mill illness. I find that I have to be constantly in tune with my system. Every morning and evening I do regular "scans" of my bodily functions. It's what a person with chronic illness has to do to survive. I am eerily in tune with my body. I knew that if my daughter was positive for Mono, I would be too (because it is my lot in life to catch everything....plus I drink out of her water- yup whoops) and thus I am glad I pushed for my own blood work. Even if there is no treatment for Mono, it is good to know one is not going crazy with new symptoms and there is a solid reason for additional suffering. I am making my husband and son do testing next week because they have also been run down. My husband missed a week of work last month and I thought it was due to grief, but now I need to rule out of it was more or not...

Here is the kicker of this though. I was JUST getting myself back on track with life goals, health foods, and regular exercise. My physiotherapist rotated my hip back into place four weeks ago and I have not been the same since. I am often in pain, and if I would have known I had Mono, I would have been even more insistent that she leave my hip as it was. Walking is such a pain now and I hope that my slowly healing body will eventually adjust. I feel like I am eighty- but even that is not right because I watch the eighty year old women next to me in physiotherapy and they do BETTER than me. I often have to stifle giggles at my apparent weakness and their strength. Those older people are amazing. Plus, one of my favourite shows "Grace and Frankie" is about two close to 80 year olds who are gorgeous, fun, stunning and living life well. My husband often says both Grace and Frankie remind him of me in personality. He said it's odd because it is like the two sides of my personality and the conversations I regularly have, are mimicked between both ladies and they say and do EXACT things I have said and done. It is uncanny, the similarities. I can relate to both of them very heavily even though they are both very different. My put together, controlled, socially aware self is Grace, and my hippie, uncontrolled, boho spirited self is Frankie...but I WISH I had their energy and bodies! I would seriously trade places with women who are decades older than me. So thus, I realize this isn't about age.

Dolly Parton is another older woman I deeply admire. Her attitude, her energy, and her body exude joy and embody the spirit I want for life. Her song "Better Get To Livin'" always reminds me of my priorities. I do many things "right." I have researched diet and follow a mix of Weston Price and Mediterranean and GAP (depending on needs.) I go to physiotherapy even though I hate it. I force myself to walk because my weight has gone up despite eating well. I consume the right minerals and vitamins, I have low toxicity in my environment and the people that I surround myself with, I practice forgiveness, I have healthy boundaries and engage in beautiful moments with my loved ones. I steep myself in gratitude daily. I seriously love my life even with these conditions and we have a healthy amount of Hygge going on in our home too. Despite all of this, in the end, I have to engage in the GRACE to ACCEPT that this is my life. And I better get to LIVIN' in whatever condition I can show up in. I am doing my best. Life still happens even when you are taking empowering steps to live well. Some people look at this as depressing, and sometimes I admit I feel a bit depressed about it. That is normal and ok. But on most days, I realize that my dark circles are a winning mark of showing up and also a reminder that it is also ok sometimes to NOT show up. "Life's a dance you learn as you go, sometimes you lead and sometimes you follow, don't worry about what you don't know, life's a dance you learn as you go."- John Michael Montgomery

So my weight may be a few sizes larger than I normally prefer again, but I'm still beautiful in my own way. I may have dark circles that require a daily triple application of make up- but am I not lucky enough to have that make up in the first place? And hey, I'm still holding myself up and that is something! I am willing to make a better way and not sweat the small stuff, and still there are things that hurt. Luckily, Mono gets better which is more than I can say about my Ferritin or Lyme. My husband is slowly being healed through therapy and meds and we live in a time where this is a possibility. We are also a family lucky enough to have a therapist who used to be a practicing surgeon and family doctor, so he can help us with all of our myriad of issues. And he also finds us fascinating and fun... I think that's pretty awesome. I have more support than most people who suffer a lot more than I do, and so I refuse not to shine when I can. Sure, some days I feel like I'm a train wreck, but in general, I am in awe of this pretty amazing life I get to have despite all the hardships. What's even better is that I am considered "disabled" and in ways I am...I am considered a odd member of society which I wouldn't change for the world, even though I would change MANY aspects of society, and I think that those very mental differences are what enable me to be this positive during life trials. Of course I feel depression at times and sadness and frustration- I accept normal human frailty and emotion...but my point is, that I don't wish to wallow in them for long unless I am in a depression and then I allow myself to feel that too. Each expression is legitimate...if you are in a pessimistic phase right now, I have other posts on that and that is ok too.

Yes! I like to have reasons for feeling crappy but those reasons are not excuses to get in the way of living my best life. They are simply inner understanding for limits, boundaries and love. Even if that best life means napping more, sometimes being confined to bed, and regularly releasing pain. I am still alive and that deserves a bit of celebration. It also can be extremely painful, and I don't want to minimize that, but I have other posts on that...In this post I want to say...I am still worthy because I exist. I am still a beauty even if I do not meet the standards for typical beauty. I am still a member of the human race even if I relate more to alien life. I am still ME even if I was unable to do anything. Ableness does not equal happiness...it can but it's not everything. What I believe in fighting for- is worthiness and BEING...for you, for my children, for my loved ones, for the world, and for myself.

"Come on sing it- oh it feels so good to be alive...Living your life in this quick moment, and you never ever think its gonna go away but I'm here to say, yea I got things to do, yea I got mountains to move...feels good don't it? You've only got one life -live in the moment."- Meghan Trainor.

My mountains may be just getting out of bed, recovering after a shower, forcing myself to walk with my kids, balancing my hubby, or making sure that my children feel my attention even if I don't have a lot of it. Moving mountains does not mean you have to make a large mark on the world, or be a "normal, contributing member of society." Find your specific mountains and celebrate your unique movement of them. Because you are HERE NOW and ALIVE and this is enough for me to applaud your existence. You have worth. It may show up differently but your worth, simply from existence, is there!

With Love and Celebration;


Song Choices: Life's A Dance- John Michael Montgomery (https://www.youtube.com/watch?v=bLrnwnNycoQ), Better Get To Livin'- Dolly Parton (https://www.youtube.com/watch?v=MKeulwZ3sGE), Good to Be Alive Meghan Trainor (https://www.youtube.com/watch?v=TBby1bOoA3A)


Skip the intro and go to the one minute mark for the song:

2 comments:

Anonymous said...

Aaahhhh mono!! I caught mono when I was 19 and it sparked the beginning of the my so-called life plans bursting into flames and being destroyed. I went through the entire gamut of physical symptoms that took months to get over but it also triggered the chronic depression that I live with to this day. I was in university full-time and was so rundown I couldn't get out of bed in the morning for class - well, let's be honest, I barely made it to afternoon classes either(!). I would get up but just felt so tired and defeated before I even got dressed. At first everyone said it was a result of my body being physically rundown but after the sore throat went away (erythromycin ftw!) I was still bone tired, anxious and horribly depressed. I happen to believe in the kindling theory with regards to my mental illness and I think the mono was my particular firestarter. Unfortunately the depression never burnt itself out and I still struggle. I guess the reason I wanted to reply to your post is 1. To say hi 2. To empathize with the experience of mono and the crappy symptoms that seem to go on and on and 3. To let you know that a common symptom is a lingering depression. Obviously you know your family best but I understand that its been a challenging year for everyone and I just want to spread an awareness that depression is also a symptom of this illness so you're not caught unawares. Anyhow I hope everyone is feeling better-

Kmarie A. said...

Thanks that is so good to know...I have been depressed with the lack of energy and being unable to do the little I was doing in the first place. It has been hard actually...thank you so much for empathizing - the symptoms do seem to go on and on!!!! and I can see myself having a lingering depression. Sigh. Thanks for the heads up!:)