For those that have read my first “Fingers Crossed” blog entry, I thank you. I wrote it a very long time ago and it describes the beginnings of my diagnosis journey with Rheumatoid Arthritis and my experience with Fibromyalgia.

When I wrote it, I was a bit younger. My conditions were not as well managed as they could be and I was still struggling with my symptoms flaring often. A few things have changed since then and I figured that it was about time that I wrote a sequel to update anyone that may be interested in finding out what has happened up until now.

Well, let’s pick up where I left off with the story. It was 2021 and my medications were working the way they should but I still hadn’t fully accepted my limitations. Perhaps I never will in some ways. I was a new father, I was only just learning about my diagnosis. There were many unknown variables that I wasn’t sure I’d be able to ever deal with. Several things have changed since then and I think it’s about time that I opened up about how the last few years have gone. There have been many developments.

After my diagnosis of RA, a painful auto-immune condition where my body over-reacts to simple things like wear and tear, infection, and injury, I received my diagnosis of Fibromyalgia. Doctor’s were unable to directly associate my symptoms to any one specific condition. So though my symptoms of RA were well managed according to medical professionals, I was still experiencing the sensations of widespread and unpredictable pain.

My fingers and toes continued to feel like they were breaking, my spine and ribs were always sore, and I would get shooting pains throughout my entire skeleton which would cause me to jolt upright in agony. I wasn’t sleeping very well because of it and I feared that there may be more to the story. I wasn’t wrong.

My last blog left off with me working for my father in a machine shop. The pandemic was in full-force but my conditions had begun to settle down a bit. I wasn’t quite convinced of my safety but I had begun to learn more and more about my conditions and realized that it had left me vulnerable. I did end up contracting Covid after all of my avoidance and it left me bed-ridden for 8 days straight. When I say bed-ridden, I mean I slept for an entire week with only a few waking hours during the entire stent. I experienced vivid hallucinations, nightmares, and pretty much had the worst of it. It reminded me of a time when I was younger and I must have experienced my first flu. My temperature was high, I was sweating through my sheets and soaking my mattress, my wife had fears of finding me deceased whenever she came into the bedroom to check on me. It was quite the experience. After physically recovering, I experienced wild mood swings and it took quite a long time to get back to “normal.”

My father was considering winding down his work, and I was quite difficult to manage, so I decided to seek alternative employment doing something a bit more tailored for my interests. Though I was very thankful for the opportunity and experience that he provided me with, I felt like I needed to get out on my own and stop leaning so heavily on my family. It was a lot of pressure to be putting my well-being on those I love and I knew that they would want me to be independent and self-supporting. They have always been encouraging and for that I am eternally grateful.

A family member of mine ended up moving and I offered to help them pack up and clean up their apartment. During the process, I realized that some of my previous experience in warehousing had come in handy. I packaged items carefully and got them ready to ship, I took apart and neatly packaged furniture, took items to donation, and shipped many others to their new address. It reminded me of when I helped a friend’s family curate a cluttered estate and it got me thinking.

“I wonder if there are any companies that exist that help those living with clutter beyond their control?”

I began to explore options and ended up finding a company in Edmonton that helped people living with extreme clutter and hoarding behaviors. They also provided seniors with concierge services in various ways. I myself being a “stereotypical male” with extensive experience doing labour, warehousing, and sales found a way to fit into a caregiver role with some of the most vulnerable people from our population. It would also help my autoimmune disease situation because I knew that I couldn’t expose myself to large crowds so working one-on-one with people that were already isolating made for a perfect environment for me to be more safe.

I worked with them for quite a while, but unfortunately it wasn’t full-time work. The hours fluctuated and there were no benefits provided. The company decided to focus more heavily on their respite and concierge services rather than hoarding and decluttering which was my favorite part. I began seeking a different place of employment that would perhaps be a better fit.

Now, in the past as a sales executive I had really enjoyed my role. I had spent nearly ten years with the same company but because of all of my conditions and the changing environment I was finding myself “bouncing around” which didn’t make me feel very comfortable financially. Eventually, I started taking a look at the things that really mattered to me and I narrowed down my focus. I began to look for my “dream job.”

Being a person that always enjoyed the outdoors, loved organization and working hard, but also enjoyed being of service, my friend suggested to me that I perhaps explore the idea of working at a local cemetery. It would allow me to be outside for most of my days, it would be essentially “stacking and sorting” people, plus I may even get to play with some fun equipment. I certainly enjoyed visiting cemeteries, I mean I was a ghost-hunter after all. So I applied and was pleasantly surprised when they gave me a shot at being a groundskeeper at a very busy location.

Early on in my employment, I began to feel better. My conditions began to settle and I felt right at home. The team was amazing, we had lots of fun while still providing an amazing service for families during their time of need. I got to be out in nature and learn all kinds of new skills. It was one of the happiest times in recent memory for me. I felt like I had landed right where I had wanted to be and wished that I had found the role sooner. If I had found that opportunity when I was much younger I don’t think I would have ever left. Eventually though, symptoms began to creep in which would begin to change all of that.
I began to flare again, sometimes for a day and other times for up to five consecutively. I became depressed because I hated missing work and I hated not being able to be relied upon. Previously, I was always the first to arrive and the last to leave. I would arrive early to make coffee for everyone and open up, I’d greet them when the team arrived, I would even offer to stay late and work extra, but now I couldn’t be that person.

I began to experience panic attacks every morning before work. I’d wake up in a state of fear and no amount of meditation work that I had learned from my addiction recovery would work. It wasn’t a typical anxiety attack, it was something much less within my control.

My pain symptoms began to creep back in and it was like I was going through my early diagnosis all over again. I was scared. Was my RA making a come-back? Were my medications no longer effective? I feared having to swap medications all over again because I knew exactly how extreme it was and how it affected my family having to witness me go through it. I was suicidal when I went through my first diagnosis and feared that my mental state may relapse back into that dark time in my life.

What was happening to me?

I was referred to a pain psychotherapy firm based out of Calgary by an amazing social worker at Family and Community Services. It was a zoom call every couple of weeks with a professional in the field, I trusted him right from the start and our bond grew more and more as we worked together; we still meet virtually to this very day. We began to explore ways to understand my symptoms and identify the sources of my “phantom pains.” I eventually learned about something called neuroplasticity and through guided meditations, constructive criticisms, and insight he challenged me to explore my symptoms not through a lens of fear but rather through a lens of curiosity. I had always enjoyed working on my mental health and spiritual growth so I got right to work and began to learn more and more about how to identify exactly what was wrong with me. My pain began to subside greatly, but the panic attacks continued each and every day.

Eventually, I injured myself. I had grown accustomed to being in pain so I had ignored many of my symptoms to “push” through so all that I could and continue to be productive. During one of my more drastic flares, I went to see my doctor to get a check up and get another doctor’s note. I knew there had to be more to the story so he gave me a full physical examination, complete with full-body x-rays and blood work. It turned out I had broken my leg sometime in the past couple of weeks though I had no recollection of how or when, and it had set itself and began to heal. Had it not been for the x-ray tech calling my doctor to ask why I hadn’t arrived with a cast or crutches, I wouldn’t have even known. The widespread pain that I lived with each day had completely hidden the obvious. To me, it was just noise within the static of sensations that I dealt with on a daily basis and I had been walking around and doing hard physical labour with a completely broken bone all without even knowing it. That part scared me a bit, what if it had been my neck or spine?

When the bloodwork came back, it showed I had high thyroid levels so I was sent for an ultrasound. I had also been having some difficulty swallowing so my doctor thought it may be best to get that looked at. I am so thankful for my doctor because without him, I’m not sure where I would be today. During my visit, the lab-tech was training a new technician so they were running their scans over my Adam’s Apple and discussing what they were seeing on the screen. I heard them mention nodules on my thyroid but at the time I had no idea what that meant. I tried to avoid googling it just so that I could hear an actual run-down from a medical professional rather than getting worked up over what it may mean.

After about a week, I had returned to work and was sitting in a backhoe. When a funeral service was “grave-side”, we knew that the ceremony was coming to a close, we would respectfully wait in the distance for them to return to their vehicles before we approached to fill in the grave and tidy up the surrounding areas. My phone rang, and I answered. It was an endocrinologist calling me.

“We have received your test results and have a diagnosis.”

I kept my eye on the grieving family awaiting the signal from the funeral director, it was a mother being interred and her children were near the grave placing dirt on the casket as part of their ceremony.

“We have found some nodules located on your thyroid that are causing hormone imbalances which is why you are experiencing hyperactivity, changes in your mood, and having panic attacks. You have Grave’s Disease.”

I burst into uncontrollable laughter; had I not been so far away from the family I would have felt horrible should they have heard me, thankfully I was far enough away and in an enclosed cab!

“It’s not really that funny Mr. Ackerman” the endocrinologist said.

I couldn’t help myself so I replied, “it is from where I’m sitting right now.”

I’m not sure if she found me funny or not honestly, I was only met with silence so I tried to break the tension, “does this mean I can stop test-driving all of the other autoimmune conditions now that you found one that fits?” More silence…

Eventually, after my chuckling had subsided, she explained to me the symptoms and causes. Graves Disease is an autoimmune condition where the immune system targets the thyroid and attacks it. It causes it to be over-active and pump out hormones into my system which results in things like anxiety, high metabolism, and engages my fight or flight response. It all began to make sense and thank god I had been doing my pain psycho therapy to help me be less afraid of what was being said. It was just another thing for me to learn about and at least I finally had a course of action to follow and a plan of attack.

I was prescribed methimazole and have been taking it ever since. So far so good, though it sometimes goes a bit heywire.

Because of all of my symptoms and anxiety, I still was unable to be a reliable employee. I kind of felt like my world was crashing around me and was a bit depressed. I was constantly in and out of doctors offices, making appointments or having to reschedule them due to my work schedule. I had to get regular doctor’s notes for days off which was just another appointment for me to try and make it to. Each month I was in at least 3 different doctor’s appointments and getting blood work done every three weeks, let alone other diagnostic tests whenever doctors needed more data. I attended regular pain psychotherapy appointments, began in-person counselling to better manage my lifestyle, and was given plenty of exercises to do in order to maintain any level of normalcy. I was still experiencing flaring and I was having difficulty getting simple things done around the house. I couldn’t keep up with all of life’s demands.

I also felt a great deal of internal pressure to perform. I had a great boss who was very understanding. I’m so thankful for him because he had an energy that I admired. I hated letting him down and making more work for him and the team whenever I was unable to attend work. It meant that he had to restructure the schedule to constantly accommodate me. Being there or not being there, plus dealing with whatever capacity I arrived with, was difficult for anyone to manage. I couldn’t communicate what was happening to me, hell even I didn’t understand it myself let alone share that with someone else, and each day brought long-conversations so that we both could understand what I was capable of and what I was not capable of. It began to take about a person and a half to do my job simply because of the administrative burden it placed on my employer. They did everything they could to help accommodate me but no matter what, it always resulted in more work and more time lost. It was inefficient and very costly to the company, a company that deals with grieving family’s money. It wasn’t fair to anyone involved and I never imagined that one person’s symptoms could affect so many people.

I had a very long conversation with my doctor. I wanted to continue to work but at the same time I felt so much pressure and regret that I couldn’t commit to anything past one day’s notice. I never knew what the next day would bring and when you are planning team projects or being part of a coordinated effort, other people depend on you being there. I couldn’t promise anything to anybody. I hate uncertainty and I began to become a nuisance. Together, we decided that, in order for me to be able to function in any sort of capacity and limit damage done to my body, I had to apply for disability insurance through a private provider so that I could focus on my medical requirements.

It took a while for me to get used to it. I had been so active in volunteering in various ways, I had been working full time, I had been a parent and partner with every ounce of energy I could muster. I had a lot of commitments that needed to be set aside so that I could focus and that required careful curation and sorting.

Over the past little while I have actually backed away from all excess extra-curricular activities and, though I may seem quite active on social media, I actually spend a lot of time resting. It’s not an option, either I plan it now or my conditions will make me do it when it’s the least opportune time. I have been learning how to adapt my world to fit my needs, learning my boundaries and participating in various therapies such as vocational and occupational in order to find out what I’m actually capable of without over-extending myself.

Since I’ve begun creating this new life, I have reduced the effects of my flaring. I still have them but I no longer need to go through the process of explaining it to anyone. If I need rest, I rest. If I need to reschedule an appointment, I can do so free of guilt. It’s made life much simpler for me but my conditions still make me feel guilty for having an invisible illness from time to time. Others may see me as an active member of the community, involved in many things, working and living my life. In reality, I’m carefully managing my time. Calculating what I’m able to accomplish each day and severely paying for times that I overdo it.

I wake up in the morning, in a cold sweat, and I practice mindfulness. I sit peacefully in reflection of my previous day, things I did well and things I could have done better, and I take an inventory of what my body might be trying to tell me. I touch base with a few of my friends to make sure that other people are aware and I feel heard. Then I plan the day ahead so that I can be the best version of me for those I love. Some days, that means I have to rest. Some days it means I can do some light work around the house. Some days, it means I can be of service to other people. I have begun to find my stride.

No longer able to maintain a lifestyle of physical labor, I am learning new skills to be able to manage and supervise. It’s something that I am not used to and I never thought it would be such a task to adapt. I’m used to jumping into situations with both feet and accomplishing great things, now I have to carefully plan and adapt as I go so that I do not over-exhert myself. I can become overwhelmed very easily by stress, infection, injury, or sometimes even by thinking too hard. My “battery” becomes drained very easily though many of my symptoms have greatly subsided. I experience extreme fatigue early on in my day. Where I used to be able to have a full day of activity I now only have about 6-8 usable hours on average, sometimes even less. I have to fit a whole life into a quarter of the time. It really takes careful consideration to be able to focus on the most important things and protect myself.

In order to function and still have purpose, with the help of my insurance provider and healthcare teams, I have been able to start working towards building a new future for myself and my family. I have been able to build a new company and work for myself.

Now that I am able to manage my own time, free from having to report or adapt, I feel like I can begin to function outside of the typical nine-to-five box that I was trying to fit into. It has freed up my time and allowed me to focus on being productive once again. I never realized how much pressure I was placing upon myself to be able to be responsible to someone else’s expectations. I have learned some new skills and included various technologies to help me adapt as well.

Sometimes, I am unable to use a keyboard due to the dexterity it requires to type so I’ll swap to a smart-phone or voice-to-text in order to continue to do my work. I can take as many breaks as I need free from guilt to stretch or walk, or do some errands. I can work as I am able, meaning that sometimes I am not working during the day and responding to messages during hours that most people wouldn’t typically work. Because I can manage my own time, I’m also cancelling and rescheduling appointments much less often and I’m able to do the exercises and meditations necessary to calm my nervous system or address my symptoms. I’ve begun to find balance.

Returning to a previous industry, I began to work with people experiencing extreme clutter and hoarding once again but in my own way. With the support of my friends and neighbours, we have founded a company together, Neighbourhood Hoarding Solutions Inc., so that I have people in my life that know of my limitations and are not dependent upon me for income. I have been able to hire people to do the physical work for us and they also require accommodations on occasion for various reasons. We can work together and help others, doing the best we can with what we have as a group. It has given me a new outlook and purpose and though we are still in our infancy, I am finding myself with extended energy at the end of each day and a new sense of calm that I haven’t felt in a very long time. Many of our clients are experiencing physical and mental limitations as well, so if I ever need to reschedule or adapt, they are very understanding and always grateful for my transparency. It’s like I’ve found a new community to belong to and I’ve made leaps and bounds towards building a bright outlook and new life. I am hoping that, as I continue to grow and build new professional skills, I will be able to have even more success in overcoming many of the obstacles I am sure to face as my conditions progress.

I am “painfully aware” that not everyone has had the same privileges as me in their own experiences. I am so very blessed and grateful for what I have been given and I don’t want to waste it. I wish that everyone had paths available to them in a similar way to my own and I hope to be able to help guide others through their own experiences by sharing mine. We, the disabled, are diverse. There is no “one path” for any of us to follow, but perhaps people can begin to see hope or someone may be able to find something within my story that may help them in their own journey. Much of my inspiration has come from speaking with people that have walked the path before me.

The burden of fear is no longer a driving force in my world. I am nowhere near perfect, but I am moving in the right direction. I hope that whoever reads this is also able to find their way towards peace and unconditional love. We should all be so lucky, disabled or not, we are all in this together. Never a dull moment. I am excited to see what the future may hold.