Tired, fatigued or just lazy… ?
It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning nightmare. Needing help with most of the practical stuff because of my disability, doesn’t make it any better. For every box that needs to be moved or carried, every lamp that needs to be installed, every curtain that needs to be hung and every piece of furniture that needs to be unwrapped and put together, I need to ask someone else for help.
It’s stressful in itself. Fortunately we had a lot of good helpers this time. We had two independent living assistants paid by the town and a moving agency to help with the heavy stuff. And I got tired just from watching.
This time we moved to a newly constructed apartment, where nothing was in place. In addition came all the paperwork. And at some point, I found myself falling into a big black hole. One week after moving in, I was falling asleep at the dinner table and the only thing I could think about was my bed. Every day that went by I was more tired. It was like a spiral or a dark hole I was falling a little bit deeper into for every hour and very day.
I spent more and more hours in bed, but sleeping didn’t help! After going to bed before 8PM, I woke up 4-5 hours later. Because of lacking curtains, a new mattress, pain, stress and the thought of everything that needed to be fixed the next day.
After two weeks in this state I felt more or less like a zombie. I had aches and pains all over and poor breathing. So I called my doctor and told him that my OI-body was about to collapse, and that I needed some days off. My OI-body was not working with me anymore. It was working against me.
Fortunately, my family doc has known me for 25 years. He knows that I don’t skip work easily. He agreed that I should take it easy for the next 2 weeks. Afterwards I went to see my massage therapist and he found a lot of trigger points. Pain was radiating into my arms and fingers. That night I took a muscle relaxer and went to bed early. And I slept for 13 hours. Deep good quality sleep. Finally!
The next day I was still not recovered. But at least I felt more human than zombie. So what was the problem? Sleep quality? Pain disguised as tiredness? Stress? Laziness? Or fatigue? This complex word I have a very ambivalent relationship to. Because what does it really mean? And in what ways is it different from tiredness? And do people with OI struggle more with it than other people?
According to the study of dr. Heidi Arponen, included in this magazine, the answer to that is no. But could it be because the way the questions were asked? I have a strong feeling that people with OI struggle more with these issues than other people. But nobody has managed to document it in a convincing way.
Because every human on earth feels tired sometimes. It’s completely normal. But do they really feel fatigued? Who knows? Maybe life is stressful for everyone? Especially now with Corona, where many factors providing quality in life are put on hold and SoMe and news are driving us crazy. Is everyone fatigued to some extent?
Honestly, I feel there is a still a piece in this puzzle missing. I think people with OI are tired in a different way than other people. Both mentally, but first and foremost physically. And it’s probably a combo of overperforming at work, education and daily life activities, because “we want so hard to be normal”. Our muscles and lungs are poorer quality, which causes less endurance and poorer breathing. We also have a lot of suppressed pain we’re not even aware of.
Pain can create poorer sleep quality and make us less rested. The Finnish study also showed that a number of people with OI have sleep apnea without knowing.
We clearly need more understanding of the mechanisms behind the different kinds of OI pain and if they cause fatigue or not. These are one of the important messages we as patient representatives bring into the construction of the OI-module in the new European OI-registry (EuRR-Bone). In addition to research and registries, we as patients must be willing to provide the necessary data through surveys, signing up for registries and using wearables and other new and innovative tools.
But people are not the only ones who get fatigued. The last months I have realized that a number of the OI-organizations are struggling. It’s hard to engage people when face to face meetings is not an option. It’s hard to raise funds, host AGMs and to recruit and elect new boards members. Too many organizations are dependent on that one engaged person. When that person has lost the spark or suffered a burnout, the group might be left in a very difficult situation.
The OIFE is aware of this and we take it seriously. We are reaching out to our members asking if there is anything we can do to help. My advice is to work systematically with recruitment of new members, volunteers and board members throughout the year.
Find out who your members are and what they are good at/interested in!
We should also be better at providing positive feedback to those people who bother to do the work, who keep the wheels turning and who takes one for the team. Sometimes leading an organization can be a very lonely job. Make sure to give a pat on the shoulder to people who take on that job! And ask if you can do something to help. Sometimes it only takes a smile or a positive comment to motivate someone to keep on keeping on.
Hang in there and stay safe everyone!
Ingunn Westerheim – OIFE president
All photos taken by Ingunn Westerheim.
Two of the photos featuring art pieces from the exhibition “Antibodies” by Josh Kline.