…And Then My World Blew Up.

That’s what happened. After my last post when I gave my first video update my world blew up. Just a couple of weeks after making the video and confidently stating that I could still walk without mobility aids, I once again began to need a wheelchair to walk more than a few feet. A month after that our home was made suddenly uninhabitable when a contractor hired by the landlord sprayed an unlicensed unregistered pesticide in our apartment, causing me to go into a severe MCAS crisis. 5 days before Christmas with a massive winter storm barreling down on the region and our family was homeless. My health, which was already in rapid decline, spiraled downhill even faster. By the time we had found a safe home after sleeping on a leaky air mattress in my granddaughter’s room at my daughter’s place for a month, I was once again primarily bed bound, unable to attend to my most basic of needs. Like I said… my world well and truly blew up.

The intense trauma of being made homeless and the severity of my illness took me and my family into an intense period of grounding and healing. Until recently there was no time, energy or space for anything extra. I began to take a step back and look at the more memorable moments as we passed the one year mark after our world was turned upside down. For a year that I spent the majority of my time either in bed or otherwise horizontal elsewhere in our apartment, there has been no lack of noteworthy happenings.

Previous to us becoming homeless and my health taking a nose dive I had begun to do volunteer work with Massachusetts MECFS & FM Association but had to put that on hold. One of the hardest parts about doing advocacy as a person with ME is that our illness makes it difficult to consistently do the time consuming and energy intense work that is needed. Through much of my life activism in politics, social and environmental causes have been something that I have participated in as much as my health allowed. I was able to attend the March For Our Lives rally at our state capitol in my wheelchair in March which marked my first political action since I started again to use a wheelchair. In the spring connected through social media with other people with ME in the area to organize a Millions Missing event in Burlington, Vermont. It was a powerful day of gathering to raise awareness about ME and call on our representatives in Congress to fund research into biomarkers, treatments and cure. I was proud to not only help organize the event, but I also gave the keynote address, which you can hear in this video below.

Unfortunately I was unable to finish the speech. You can see at the end of the video that I stop speaking rather abruptly. I struggled with great fatigue and emotion as I spoke and reached a point that I could no longer continue. The following day I recorded the rest of the speech from my couch – at the start of what would be a months long crash – the result of the exertion of the planning and participation in the event. A high price to pay, but when it is my life that I am spending my precious health resources on, it is a cost I must afford. I’ve posted that video below.

The summer was long and rough but by late August I surfaced for a quick trip out of town to celebrate my birthday and do some traveling with my husband. A few nights in Quebec City followed by a family visit in Boston brought much needed change of scenery. It had been years since we had been able to do any traveling, which is one of our most beloved activities. My manual wheelchair was difficult to push on the steep hills and cobblestones of Quebec City, causing both my husband I to yearn for me to have a power wheelchair, something I had already been dreaming of before then, but we made the best of it with the manual chair and thoroughly enjoyed ourselves.

Winter hit early and hard which brought with it another increase in the severity of my symptoms. In early December once again we headed to Boston where I saw a specialist and underwent some specialized testing. This yielded some valuable information and the start of a new medication. New answers. New hope. Two things that don’t come often with ME. Today, three months after starting the medication I am happy to report that I am feeling some positive impact. It is early days, and as it always goes with such matters, improvement can be followed by further decline so it is with cautious optimism that I integrate the changes.

So there you have it. This is what happened after my life blew up. This is where I am today.