My Journey and ME

Basic Stuff

Name: Don
Country: Canada
State: Saskatchewan
City: Langham
Gender: Male
Education: Four Year Degree
Primary Illness: ME/CFS
Diagnosis:
- Chronic Fatigue Syndrome (ME/CFS)
- Fibromyalgia (FM)
- Postural Orthostatic Tachcycardia Syndrome (POTS)
- Irritable bowel syndrome
- Migraine
- PEM (Post exertional malaise)
Year Illness Began: 2021

Functioning Interrupted

Former Level of Functionality: 100

(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)

Current Level of Functionality: 30

(Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods.)

Work Interrupted

Former Occupation: Heavy duty journeyman Mechanic
Job Responsibilities at Former Occupation:
Repair at maintance of a variety of commercial semi's
Years of Work Lost: 2
Current Work Status: On disability

Income Interrupted

Yearly Income Before Becoming Ill:
CA $70,000
Yearly Income From Disability:
CA $18,000
Minimum Current Annual Income Loss:
CA $59,255
Total Projected Economic Losses For Years Not Worked:
CA $149,607

Other Interruptions

Certified Disabled: Yes

Finances:

My parents or other family members have provided financial support
This illness has severely impacted my ability to financially prepare for retirement

Work:

I left my job or retired early

Most Impactful Loss

I believe it has affected the quality of my relationship with my wife and children.
My overall mental health has suffered a great impact.

My Story

We all have our remembrance dates, maybe the wrong word to use. The day you knew something was going on, most putting it down to maybe the flu to start with but knowing something isnt right, After the first few visits to the ER with being told everything looks normal and thinking i sure dont feel normal.

This is just abit about my journey and im sure its going to sound familiar to some people. I also want to say ive known people who have suffered a long time with ME and ive not really understood the toll it takes and im sorry for that, i certainly understand now.

Post October 12th 2021 is when it started for me. Before then I worked out in the gym 2 hours every morning, getting up at 5am. I would then head to work, energized for a 10 hour shift, coming home to play with my 3 very young children and I enjoyed it, That's who I was. I even competed in some charity 10k marathons, you could say i was as fit as a butchers dog.
October 12 2021, it all changed.
That morning I struggled to get up. I eventually went downstairs to put on the laundry. Decided not to go to the gym as I felt warn out, thought maybe I was coming down with a cold or something. I struggled to get back upstairs thinking I was having a heart attack but it subsided but I was left exhausted so I called into work and told them i wouldn't be in that day and went to bed.
I think around the 14th I had to go to the doctors after I ended up crying and panicking in the foot well of my wife's car for no reason whilst picking the kids up from school. I remember feeling very scared and having a terrible night that night and going back to the local doctor. He said I was having panic attacks and that my heart beat was irregular. My blood pressure was high. He gave me anti depression and anti anxiety medication and diagnosed me with anxiety, i remember thinking that isnt me, i rarely even use to get worked up and i hardly worried about things. I let people feel my pulse at work and I found it amusing at first cause it was like morse code, Then it started affecting me were I would need to go home half way through the day. My wife and I decided to move back to the city as the job I was in was slightly stressful but nothing I hadn't dealt with before but I was advised that it could be a contributing factor to my issue, stress.
I got a job in the city we're I had worked before and knew the guys there and loved it.
I was a heavy duty journeyman mechanic of 30 years and loved my job.
Just after Christmas that year I started struggling with laying underneath semis and holding things above my head. I would have panic attacks at work and my boss would drive me home were id pass out from exhaustion. I started missing days and had frequent visits to ER with heart issues, palpitations and a heartbeat that would become slow, at one point my blood pressure went high and my oxygen level dropped to about 86, my pulse was 36. I didn't know what was going on, it was scary. I went by ambulance to the ER and spent 5 days on the heart floor. Eventually they decided i needed an heart ablation. I went to a cardiologist who, cutting things short decided I needed this ablation. So all booked and the day came to get it done, laid on the table ready for the operation
The nurse shaved my groin ready for the instruments and the doctor decided my heart rate was too high and the palpitations werent really serious enough to carry out the procedure. He decided that the issue was second to something else. I visited many specialist and had many tests. The tests all came back good except high ferritin and high CK which eventually became lower by themselves. I stopped going to ER because every test came back normal except for things related to lifestyle. I was diagnosed with type 2 diabetes which I think was because my diet just became unhealthy due to beening too tired to prepare healthy food. Eventually got that under control. In the mean time, symptoms such as PEM (post exertional malaise), I tired going back to the gym but managed 3 minutes on the running machine and 3 on the bike, the aftermath was not good, brain fog, body pains muscle, joints and bone, nerve damage in my arms and hands, crazy fatigue where I had to sleep 2 or 3 times extra a day to then get insomnia. I also started having mood swings and getting upset and angry due to missing out on family activities, changes of medication and just not being able to do things that use to interest me. Finally after a visit to rheumatologist, 3.5 years since becoming ill, which unfortunately I missed the first appointment due to fatigue and well just thinking it was a waste of time out of experience. He said that he'd read my extensive medical file and that he was now diagnosing me with Myalgic Encephalomyelitis and fibromyalgia which at first thought was that it was a cop out but after doing some research decided it sounded about right. He also added, looking at the timeline and seeing a pattern said that he couldn't say for sure but there is a likelihood that it my be linked to the covid vaccination, Anyway i asked "so what do I do then to get better" his answer was well its not curable yet and really the only treatment so far is pacing and just thinking positively which was tough to hear.
Now I found it difficult too pace looking after 3 young children and my Wife being a full time nurse and student. As a stay at home father now it was my job to tend to household duties and I felt guilty when not being able to complete them, Sometimes pacing just didnt fit in so I find myself burnt out on most occasions.
After this years school summer vacation ends in a couple of weeks and the kids go back to school it might start to get easier as the they are all at school full time so maybe I will be able too pace better then, we will see.

My wife suggested we go to Mexico,as a family we had never been abroad, I would usually have been excited about an adventure like that but now I can't spend more than 30 minutes on the local beach without consequences, even just sitting on a chair in the sun, something that would sound wonderful to some people but it caused me heat related fatigue and I had to go home and sleep after an intense skin itch and a cool bath, so that trip might be on hold for abit but don't want my Family to miss out.

Trying to find the correct description of this fatigue, I guess it feels like all the energy drains from you for example, leaning my head on my arms and my arms can't take it, the muscles start to hurt and spasm, my elbows feel like they might explode then literally the strength pours out of you and your left with trying to keep your head up when your neck feels the same as your arms.
Anyways I've read lots of articles on Myalgic Encephalomyelitis and CFS and I guess the original treatments have been updated with more accurate information as not to do more harm to the patient. There has been research funding in Europe, the Ramsey research fund with help of The ME association which have lots of downloable information, is helping find biomarkers to help understand this disease better and hopefully leading to a more positive and effective treatment fingers crossed 🤞
I wrote this, I guess blog, firstly to get it off my chest, the mistreatment, misdiagnosed and misguidance. Secondly to support you guys that are currently going through this process and there are people out there going through similar situations. Your not crazy like the Doctor said, the only reason why you've had to take antidepressants and anti-anxiety meds is because of the situation. You're not invisible, you are seen its just unfortunate that you have to go through this process so you can learn your new normal and adapt.
Not really sure how to end this rant except getting off my soap box and saying there will be tough days, but hang in there Warriors, you are in my thoughts.

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