Man and woman standing on kitchen counter mounting a lampIt’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.

Woman with blonde hair, glasses and blue t-shirt lying in sofa, looking at camera. 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

 

Photo credits:

All photos taken by Ingunn Westerheim.
Two of the photos featuring art pieces from the exhibition “Antibodies” by Josh Kline.