5-part Series: The Truth about my Life with Multiple Chronic Illnesses, Part One

Welcome! Thank you for stopping by to see what’s new in my world. This month I’ve decided to dedicate my Tuesday blogs to sharing the truth about how chronic illness has impacted my life over the last five years. You’re probably thinking…but isn’t that what you already do? Well, yes and no. What I’ve never shared here before is that I often skim the surface of my reality, for you. I’ve always tried to be emotionally responsible with other people’s feelings, and telling the truth here, I fear, would be upsetting or uncomfortable so, I try to keep it light, as best I can, while being as honest as possible. This works fine normally, but it doesn’t allow my true realities to come to light. So, in honor of still being here after five years with this unwelcome guest illness in my body, for the next five blog posts I’m going to let the truths flow freely, as well as share with you how my symptoms impact my life. If you aren’t interested in that and just stop in for my little watercolors at the end, that’s totally okay, just scroll down, they’ll be down there. 😊 Lastly, rest assured my normal posts will resume in August.

For those of you that have been around since the start of my blogging adventure you likely know a lot of what I will share, but as I said before, this might be a little more ‘oversharey’ than normal. With that, you’ve officially been warned, now let’s get started.

Five years ago, this week, I was on top of the world. I’d just finished homeschooling my son, 8th thru 12th, he graduated with honors, and it was OVER…yay! Homeschooling is no joke, folks! It took a lot out of me, but I don’t regret a single moment of it. I was thinking about switching jobs, same field just a different firm (more money). I’d been waiting to get my son out of school before switching employers just in case I had to work overtime (homeschool was done at nights). I was also thinking about maybe going back to college at night to chase after my own dream of becoming a Licensed Marriage & Family Therapist. I was super healthy, or so I thought, happy, and ready to turn a corner in my life. I’d been eating a whole-food, organic, no dairy, no sugar, no gluten diet (you know…the one they recommend for MECFS) for about a year and a half and was feeling great! My fibromyalgia, which I’d had for 10 years at that point, loved that diet and my pain (my only FM symptom) was pretty well controlled. Things were good, life was good.

In fact, on the 4th of July we parked over a mile away from where we were going to watch the

Fourth July 2014
4th of July 2014

fireworks and enjoyed the stroll like it was nothing. I wasn’t a big drinker, maybe a few times a year, but we drank champagne (in water bottles … shhhhh😉), while watching the fireworks from a picnic blanket on a sandy beach. It was a lovely evening. I had no idea that would be my last time out like that, my last time feeling great and celebrating one of my favorite holidays. Honestly though, had I known, I wouldn’t have changed a thing.

There were signs early on, signs my body was out of whack, things I was ignoring along the way. The first sign started in January. We had a TERRIBLE flu sweep through the house in January. Worst one I’ve ever had, my son actually ended up in the ER from it with dehydration. We did eventually recover but I noticed ever since that flu that once in a while when I would walk at night (I walked every night) I would feel off balance for a step, but then it would pass. It’s actually the way I always feel now. It was concerning enough that I brought it up in my annual physical in the beginning of that year and the doctor referred me to a Neurologist. My first visit to that Neurologist (I’d only been sick with MECFS for a week) was solely to discuss that issue, as I still thought maybe I had a flu. That symptom was eventually diagnosed as a vestibular disorder after some of the worst testing I’ve undergone thus far. Little did I know what was coming down the pipeline. A few of the other symptoms that started to rear their ugly heads were closer to onset: Gerd (air and bubbles were literally bubbling up from my stomach and I still get this especially when flaring), restless legs at the end of the workday, especially if I had to work overtime (same as I get at bedtime now when I push too hard), air pressure build up behind my eyes, which I still have and can actually press and pop out (the air not my eyes 😉), yep yuck, and then finally right before I came crashing down I started to get anxiety, at home and at work. The confusing part? My life, as I mentioned above was transitioning into a great place, so the anxiety wasn’t making any sense. In reflection I can see there were internal alarms going off but being the push-through-it kind of person I am, I just kept going.

And then in July I got a virus, or something. A coworker had been really sick but had come in (grrrrrrr) and she was coughing all over the place and sounded horrible, and I suspect I got her virus. I kept working, you know, as us over-achiever’s do. I felt myself slipping, getting worse. A couple days in one of my superiors suggested I go home. So, I did, and that was my last day. I continued to get worse, and terrified, absolutely terrified. I think I had three available sick/PTO days. As a single mom, no income was NOT an option. My boyfriend and I did/do live together but we have never shared finances, and I was solely responsible for my portion of the household bills as well as my own bills and my son, including food and life. I remember sitting in my doctor’s office sobbing, absolutely sobbing. I saw my life unraveling before my eyes. She thought maybe I just needed some time off to relax and recharge. She signed me out for a couple months and sent me off to several different specialist for the fatigue, flu-like feeling, dizziness, and breathlessness. My labs all looked perfect, I looked healthy, I was just so tired I couldn’t get out of bed, or function normally, I couldn’t drive, I couldn’t walk without feeling like I couldn’t catch my breath, and my brain was oddly foggy. Just to clarify, I went from supporting three attorneys, with thousands of cases rotating through the docket, and homeschooling my son after work, to not being able to get out of bed, speak in full coherent sentences. I was forgetting things I just said, and consistently feeling like I’d just been hit upside the head. Something was going terribly wrong with my body, and nobody knew why.

So that was the beginning. Since then I’ve seen 29 health care professionals and have been diagnosed with Blepharitis, Cognitive disfunction, Dyspepsia, FM, Frozen Shoulder, Hypotension, Interstitial Cystitis, MECFS, MTHFR (genetic mutation), Normochromic anemia, Osteoarthritis, Pernicious Anemia, POTS, Tremors, Memory loss, Migraines, Anxiety, Depression, and Vestibular dysfunction (Central Nervous System and Inner ear). When I began I had one diagnoses, fibromyalgia, and none of the others. I have not had ONE DAY where I’ve felt as well as I did the day before I fell ill, not one. I’m sick every single day. Next week I’m going to talk more about my symptoms, what they are, how they impact my life. My health has been steadily declining, but emotionally I’m stronger than I’ve every been. I’m kiss-the-ground thankful to be here every day. It’s been said that if you don’t heal within the first five years, you’re likely not going to. Well, that breaks my heart, but foundations like Open Medicine Foundation continue to fill me with hope.

Lastly, I know I don’t owe anyone an explanation, but here goes anyway. I’m sure people wonder how I can paint and post on IG as frequently as I do. My drawings are only a few inches. I start them early in the day and work on them for a few minutes at a time throughout the day, otherwise my hands cramp up and start to pop out of joint. They are often the only thing I do that day. If I’m not spinning with vertigo and can hold the pencil and paint brush, I doodle and paint, from bed. There are many reasons why I force myself to continue on even when I probably shouldn’t; I guess the top three are that it makes me feel like I accomplished something, it helps me interact with the world, and so my son and BF will have something to look at after I’m long gone. Below are a few more of my doodles, some are new, some are older (I repost older paintings on IG when I’m unable to paint). If you made it alllll the way down here. Thank you for sticking it out 🌸

28 thoughts on “5-part Series: The Truth about my Life with Multiple Chronic Illnesses, Part One

  1. marlene

    Thank you this really helped me today. I’m coming up to the 2 year mark of almost the exact kind of story. Got up….by the time i went to bed that night…. (i certainly didn’t know it that day) but life hasn’t not been the same in Any area of my life. I thot things like that only happened with an accident & paralyzed or something dramatic like that. Never really got it or even thot about it. So it was just a relief to “hear” the plain truth. Not the raw, raw you go girl stuff…just
    a bit of yeah…. “so this happened”…and someone else is the one telling the tale.

    Liked by 1 person

    1. Thank you for stopping in, and sharing your thoughts. I’m sorry you too are on this journey. There’s a lot of sugar-coating going on out there but the truth is, it’s extremely difficult and some days feels completely impossible. Hoping today has been kind to you 🌸

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  2. I am so very sorry for all the crap your body is putting you through. I have to say that I was thrilled to see that you homeschooled your son! I am homeschooling all of my children and have graduated one. It is so overwhelming and there are days I am not sure I can do it anymore, but like you wrote, I wouldn’t trade it for the world……….I am so blessed to have watched them every step of the way. Thank you for encouraging me today!

    Liked by 2 people

  3. Thank you for sharing your story. It’s so important that you write about it as it helps others dealing with similar issues. Homeschooling is so much work! What a gift you were able to give to your son. Thank you for sharing your art, it always brightens my day. I hope for a cure. I’m looking forward to reading the next post. Lots of love and hugs!

    Liked by 1 person

    1. Thank you, Beverly🌸 It’s exhausting and emotionally challenging but it feels like it’s time to share it all too. I’m thankful for my memories pre-illness. My heart breaks harder for younger people, who aren’t able to have all the treasured memories I hold so closely. Hoping today has been kind to you 🌼

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  4. Thank you so much for sharing your story Mishka. I know this can’t have been easy to write, as it probably made you relive things you’d rather forget, but sharing what you go through on a day-to-day basis has the potential to help others who may be going through something similar. I look forward to reading the rest of your series dear friend. As always, I loved seeing your beautiful artwork. You’re so talented — I want to be like you when I grow up.😊 Seriously, though, you are extremely talented. Sending hugs your way!

    Liked by 2 people

    1. Thank you, Terri🌸 It isn’t easy, so emotionally draining, but also important to share the raw truth once in a while. And thank you for the compliment. I still don’t feel any talent or artistic ability whatsoever. But I do feel like I’m having fun and at the end of the day that counts for something 😁 Hoping you have a lovely, peaceful weekend 😎

      Liked by 2 people

  5. I’m sure you have your reasons for worrying about oversharing or sounding doom and gloom, but I hope you are able to let go of those reasons and continue to share. As I am sure you remember especially in the beginning, the only thing scarier than getting a new symptom, is feeling completely alone and understood. Thank you for sharing!…. I recognized maid of the mist from my trip to Niagara, did you get to go on the boat?

    Liked by 1 person

    1. Thank you 🌸 you’re so right, it was terrifying to feel so misunderstood and alone. I had no idea there were millions of us in the same boat. At least for July I’m removing the filter as best I’m able.

      My mom and I took my then two year old son on the maid of the mist in 1998. My mom begggged me to go, she was the adventurous one😁 We had a blast! Such fond memories 😊 Did you have fun?

      Liked by 1 person

  6. Oh Mishka, you have this part of your story so honestly and openly, it makes my heart ache knowing how much you’ve struggled, how much so many of us struggle with ill health and the knock-on effects it can have on everything in our lives. When you wrote ” I have not had ONE DAY where I’ve felt as well as I did the day before I fell ill, not one. I’m sick every single day” I nodded and realised this is something that those without chronic illness don’t seem to ‘get’. Our baseline, which is unique for all of us, is still far different to what we used to experience before illness came along. Even if we’re doing better one day than we were the day before, that doesn’t mean we’re well, it’s just a case of being back to our baseline (meaning still sick, still in pain and dealing with the usual symptoms). It makes me sad but it’s also a lovely way of viewing your art as something that lasts, something that others can look at, your mark you can leave on the world – much like your words imprint on the lives of all of us who read them, and for that I’m grateful. You’re a blessing, Mishka.  ♥
    Caz xx

    Liked by 1 person

    1. Thank you for your sharing your thoughts🌸 Even in constant illness I think we forget to show ourselves compassion. Being sick every single day is rough on the body, and the heart. The body knows it shouldn’t feel sick, those feelings are an indication that something is wrong. It’s mentally draining at times to say to yourself, no you’re fine when your body is like ummmm no, not fine.😳

      You really have a beautiful way with words! Thank you for sharing that part of you here 💕

      Liked by 1 person

  7. Pingback: 5-Part Series: The Truth about my Life with Multiple Chronic Illnesses, Part Two – Crafts, Chronic Illness, and Adulting

  8. I am so glad you are sharing your story! I will keep following along, was off WordPress for a while but am catching up now.
    It is hard to read about all the pain and loss you have experienced, yet it was helpful in getting to know you better. Your story is furthering my understanding of myself as well as others suffering from chronic illness. These ‘silent’ illnesses need MORE awareness, and to be taken more seriously than they are, and hopefully your bravery and vulnerability in sharing will help raise awareness so that eventually there will be answers and cures.
    I hope and pray you keep on writing and painting and living as well as you can, friend. ❤️

    Liked by 1 person

    1. Thank you for taking the time to read through my journey. It’s not easy to write and I imagine not a real feel-good experience to read. But it’s as you say, we need more awareness. Invisible illnesses leave people so incredibly isolated and lonely. That’s no way to live. Every day is a new chapter for me. I find goodness, peacefulness, and happiness in the tiniest of moments. Hoping today is kind to you and thank you for sharing your compassion with me. 🌸

      Liked by 1 person

  9. Great post! Thank you for sharing your story.

    It’s amazing how quickly life can change. So many of us were so active before our sick lives began, which makes it that much harder to accept our new lifestyles. Looking forward to the other posts.

    Liked by 1 person

    1. Thank you, Lindsay, for stopping by and reading my ramblings. You’re so right, we learn quickly how life can change in an instant, definitely learn to enjoy the good times and certainly no longer take them for granted. Hoping today has been peaceful for you 🌼

      Like

  10. Pingback: 5-Part Series: The Truth about my Life with Multiple Chronic Illnesses, Part Three – Crafts, Chronic Illness, and Adulting

  11. Pingback: 5-Part Series: The Truth about my Life with Multiple Chronic Illnesses, Part Four – Crafts, Chronic Illness, and Adulting

  12. Pingback: 5-Part Series: The Truth about my Life with Multiple Chronic Illnesses, Part Five – Crafts, Chronic Illness, and Adulting

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