My husband is living my dream
As you might have learnt about me, I have endometriosis. I believe to be among those more fortunate because I can mostly function in daily life – often limited and suffering inside, but still, I can move about, I can keep my job (with hybrid work though) etc.
I keep learning, studying and developing myself as that's one of my deeply engrained values. From time to time, I have a rush of motivation paired with a boost of energy and I can do some more activities, sports and "extroverting" (which I sometimes regret agreeing to later😊). But I still cannot do many of those things as 'putting a brave face and doing it anyway' does not work for us - girls with chronic illness – because we pay for it later; in energy dips, augmented pain, nausea and neglected household chores, piles of laundry and other things that are suddenly out of the question on the fatigued days.
Endo – how we 'endo girls' call it - is a chronic disease, which - even though it is something we are aware of - takes a while to process and accept it.
I personally sometimes feel like an impostor, partially because I'm not totally incapacitated by it. But it's there, present silently every day in the things that no one sees on the outside. Maybe, besides my husband who notices my paler-than-usual face when I'm drained of most of the energy. I think, he sees it before I even realize it how far I'm exhausted already, because I kind of got used to that 'sensation'.
At some points I think that maybe there is a course of treatment that will alleviate most of the symptoms. Well, brace yourself, as I'm going to tell you otherwise. This is a wild ride and as no one experiences it the same way, I can guarantee you that no one had a smooth journey with it either. Perhaps we can talk about it another time.
And in a lot of it I'm lucky in another way because I have a very supportive husband, who accepts me the way I am. He is not judging or assuming and often takes on extra responsibilities to lift the pressure off me.
But I envy him.
Even though he is also affected by this systemic issue in our household and often tired from the uneven distribution of responsibilities, he still has the energy to do stuff. The stuff that I loved too and – in my humble opinion – I wasn't so bad at it either. One of those things is SUP (Standup Paddleboarding).
I fell in love with SUP the first time I saw it in a newspaper – some color magazine about sports. Maybe it was that open water scene that promised freedom but also fun. Or maybe it was that cute short neoprene swimsuit with patterns and colors I immediately dreamed of wearing. No matter what it was, that sparked, I was hooked and basically signed us up (never having tried it before) to an alternative triathlon with SUP as one leg of the race substituting the swimming.
I dream and go back to those days often - a marathon on a frozen lake in Siberia, two triathlons in one year, sleeping in a tent before a race. It seems unreal now. And sometimes I took it for granted, which makes it harder.
In all honesty, I feel super proud of my husband that he still takes it seriously and to training even in some gloomy weather conditions. He even did an accredited SUP instructor course and is now internationally certified trainer. This was also my big dream... But I keep telling myself that he is anyway better suited to be a trainer as he has more patience that I do, so it probably worked out for the best. 😉
And yet I'm proud of myself too. I found it difficult at times to accept that I cannot do things I could do before. However, I took a decision that meant that I had to let something go and just go easy on myself, and you cannot imagine how big of a relief it has brought.
When colleagues started planning a group run, I wanted to join. With my history of running and forming running groups at previous jobs, I really knew how much fun it can be. But weeks later I hadn’t even touched my running shoes as I was struggling with the treatment that made me feel worse again.
It took time and quite some acceptance work alongside inspiration from other women in endo community, but eventually realized that I do not have to run. I can walk. There is no shortage of walking events in the Netherlands, so I quickly found my alternative. I checked in with my values, let myself off the hook and somewhere in that I found more breathing space and new motivation.
Have I made peace with it entirely? Honestly, no. But I am realistic and know that this is not a linear process. What I found on the way though, was a little more room. Room to breathe, to move differently, to let things take a different shape.
If you find yourself in that process too – grieving the version of you who could – just know that it is possible for this weight to lift, even a little. No need for huge effort, just enough to let some more light in. I truly wish that for you.
Till next time.
Stay rooted,
Dominika
Dominika on the SUP on Loosdrecht lakes; some time in April 2017. But who can remember?