It has been a while since I have written a blog post. Not because there has been nothing to write about, I have just been working on myself and needed some space to do that. I think I want to start writing again though. Writing is a good way for me to process my thoughts and feelings, and sharing them with you all helps with the conversations about our lives.
The question “how is Kevin doing?” is always a hard one to answer but I finally feel like I have some good news to share when people ask! I no longer need to search in the back recesses of my mind to give an answer but can honestly say “better then he was!”
June and July were two very rough months. It was a pretty low point in our journey and we were not sure where to turn or what to do next but we are praising God that since August he has been doing so much better, to the point that we were able to shoot two weddings in three weeks (one of which we needed to travel for) with no real hard crashes! This new level of high is one I don’t really think we have seen in the last three years of marriage and I will confess I am living in it with bated breath wishing and praying for it not to end.
Let me back up and tell you what has been going on and what we believe has been the beginning of the hopeful end for us!
In January 2024 we went down to Hamilton hospital to a pain clinic there. Kevin was diagnosed with Fibromyalgia. This was a shock and it was hard for us to process this news, harder for Kevin then me. There were several things that made this news hard to hear. This is not a diagnosis that is given to men very often, Kevin is not in a lot of pain (which is the primary symptom of Fibromyalgia) and we have been given a diagnosis so often that we did not agree with that it is kind of hard to take anything at face value. Most of all, this was hard news because there is no real cure for Fibromyalgia. A little while later he had a meeting with a social worker who, when hearing that Kevin doesn’t have that much pain, was unsure about this diagnosis as well, she was also willing to listen about the Lyme diagnosis and connected Kevin to a Registered Nurse. Kevin also got put into an informational virtual meeting group about a class he could take on managing fibromyalgia. This class seemed way to intense for him at the time when given the information but he was interested. the pain clinic then set him up with a Physiotherapist as well as an Occupational Therapist in hopes that they would be able to get him to a point that he would be able to take the classes. This has been a huge game changer. We are now, some what convinced that fibromyalgia could be the primary diagnosis, I will do another post on what it is and why we now agree with this.
The first month was intense with a lot of appointments (sometimes 3-4 a week) and a lot of new routines. He did so well in applying what they were asking him to do. He learned that he stops breathing whenever he is concentrating on something. And his need to push through and get as much done as possible to “catch up” on good days is not as productive as he thought. These last 8 weeks have helped both of us manage his disabilities so much better!
He is learning to stop often to take a quick break, even just for 2 minutes, to check in with his body and mind. He is learning to do breath work and simple exercises multiple times a day to help regulate his nervous system. He is learning that his brain is an amazing organ that has been too effective in keeping him safe. He is learning that healing your brain takes a lot of patience and practice and gentleness, you cannot fight your brain when trying to change it. He is learning that there is hope, even amongst a diagnosis as scary as fibromyalgia, in fact more hope then we received in the last 3.5 years. In this dark diagnosis, the one with no cure, the one that should bring shadows and fear, there is now a small light at the end of this long dark tunnel.
We do think Kevin may have had Lyme’s at some point in his life but that Fibromyalgia might be the key to answer some or all of those issues. Stay tuned and I will try to keep you all updated more regularly. Thank you for all of your prayers and support in the last 3 3/4 years.
