Blue Monday. Typically the hardest day of the year for so many people for so many reasons.

I felt inspired to come to the blog this morning to share, but also equally terrified at the same time. Whenever I share about Chronic Illness/ Chronic Pain/ Chronic Fatigue, I am struck by the two sides of it. The juxtaposition of feeling release- not holding my daily reality back- sharing and putting the experience to words can be freeing. But on the other side of that amazingly positive freedom of expressing myself is the deep seated fear of being seen as attention driven, Looking for sympathy. The person who is always “down”. Someone who is not doing enough, or should be stronger in the face of my reality.

However, over the last bit, and with my newest diagnosis, what matters to me more, is supporting all the people who feel the same as me, whose reality is similar to mine. Staying silent does nothing positive for myself, or others in the same boat. So…with that said. The haters and nay sayers will no longer see me holding my tongue.

When I reflect on my journey with illness, I am struck by how signs were there that physically my body reacted differently than others during elementary, and high school. I felt shame over the fact that participating in sports made me absolutely bottom out- while others enjoyed it.

With that said, I didn’t think too much of it, and I certainly didn’t envision the twist and turns I would experience beginning in my mid 20’s and I definitely didn’t anticipate being fluidly disabled, and losing my reliable mobility by 37. Being diagnosed with a genetic and progressive condition, which most certainly at the time of writing this is altering my reality really quickly.

I want to share with the world that those of us who face our health declining, our mobility changing, or being totally altered really struggle with body grief. Imagine living your day to day and then suddenly that reality is altered. It may be slowly at first, or it could be as simple as waking up one day and finding yourself totally changed. What do you do with that? It is impossible not to miss the old you, your old abilities- no matter how much self love you have.

The goal of staying positive, and continuing to live your life to your best ability is a major focus for the Chronically Ill. In fact, in my opinion, it is a full time job. Yes, there is beauty everywhere, wonderful moments, great people, blessings. All these things become so much more important when facing pain that screams at you every second of every single day.

Let me say this louder for the folks in the back that doesn’t mean its a cure. It doesn’t magically quiet the screams from every single place in your body that needs love, rest, support and intervention. (In a world that makes it impossible to fully rest and destress) You go about your day all the while trying to honour but yet ignore the screams of pain long enough to support your people, to do your job, to pay the bills.

My husband and I are doing every single thing recommended by doctors. Physiotherapy twice a week, Osteopathy twice a month, Massage, Supplements, Medications, Referrals to specific clinics, braces, rest. I tire of being a patient most days. I tire of having to consistently advocate for myself. I tire of researching my own condition and then having to teach my doctors. I am tired of my husband needing to stress so much about supporting me because my ability to work and help support our family is slipping away. I am still trying to fit in my painting, not just because it became a business and we can use the income to support our family, but because I love it, and it’s the only thing I have found that transmutes some of the struggle.

I create the world I wish to live in, bright, energetic, colourful, vibrant, and in my mind- pain free.

Here is a peep into my diagnosis and the symptoms I experience every single day. (I also battled Chronic Lyme Disease and Co-Infections, but cleared that hurdle after a trip to Germany for treatment in Summer of 2020)

Current Diagnosis: Hypermobile Ehlers Danlos Syndromes, POTS, Dysautonomia, SVT, Cranio Cervical Instability

Symptoms: Headaches, altered vision, neck pain, spine pain, wrist pain, (can barely hold a paint brush these days) extremely poor circulation, insomnia, inability to lift my left leg, weakness in joints, injury from doing normal activities, swelling, elevated temperature, seized muscles, fatigue, nausea, unexplained bruising, limited mobility without creating more issues/injury in my body, word loss, confusion, fainting spells, racing heart, SVT attacks (racing heart and messed up rhythm in my heart beat), anxiety, pinched nerves, loss of feeling/numbness in my hands, arms, legs, feet, and L side of my back.

I’ll cut the list there, I’ve likely forgotten something, but the point is-

no amount of positivity can counteract living with these things on a daily basis. It just can’t.

I absolutely love everything about my life, my family, my friends, my house, my pets, my connections, my art business, my garden, animals in general, true crime shows, my sneaker collection, being creative with my kids. I am extremely blessed. I live an extremely awesome life even with my illness and my symptoms. I have so many moments each day of extreme happiness. I am warmed by these moments and grateful for them.

I suppose me sharing this today is my way of acknowledging Blue Monday in my own way. Speaking out about the state of my condition, so that if others are living the same, and feel unheard, unseen, or too nervous to share all of these things that society has told us makes us “less than”. That those people feel seen, and heard in my writings. That you know that you are not alone, Blue Monday or otherwise. So many people are in the trenches with you my love.

I also know that so many people are in the proverbial trenches and it’s not because of Chronic Illness. The last years have been hard on everyone. People have lost family, friends, felt more isolation, struggled with anxiety etc. Our realities may be different, but the struggle unites us. I don’t know if there is a single person these last years who hasn’t been affected and altered. Mental Illness is hard for people to navigate and find support, and so many struggle in silence.

On the go forward, you can expect the blog here to become more active, some will be health related, lots will be art and home decor related. My goal is to share all facets of my life in a complete and truthful picture so that I can really honour the nuances of living and striving for more, while being disabled and managing a chronic illness.

You can have a beautiful life and a very long gratitude list- and still struggle deeply.