As a person with Post Covid19 Syndrome (Long Covid), fatigue is one of my main symptoms that has left a prolonged impact on my daily life. It’s affected my ability to do basic actions, work, play and engage with other people. It is very similar to other post viral conditions like CFS/ME, POTS, Lyme disease and fibromyagia. As numbers of people diagnosed with Long Covid are increasing, the need to discuss how to manage fatigue is becoming even more relevant in our communities. So, these are my thoughts on how to manage fatigue if we choose to engage in rope play.
What is fatigue?
Fatigue isn’t just feeling tired or sleepy. Resting or sleep do not eliviate symptoms. It’s where the slightest of physical, mental or emotional exertion leads to extreme tiredness. It’s like someone has taken your batteries out of your body and you can’t move. The body can feel heavy and in pain. Trying to move feels like you’re moving with sand bags attached to every limb, and your brain just can’t process your environment with any speed.
A person suffering with fatigue can suffer with relapses that can last for hours, days or even weeks. A sudden stressful event can use up all the energy reserves and we feel wiped out. This can lead to further phyisical harm, because the heart and lungs have to work extra hard to do the simplest of tasks. It can also put strain on our mental health because we can’t do what we want, and sometimes need to do. We need others around us to support us as best they can, which isn’t always easy to ask for because we don’t want to feel like a burden or nuisance to others. However, your health is far more important than your embarrassment, and caring people will understand that your health and well-being needs matter.
Playing with others?
Finding understanding and compassionate partners can be difficult, should you choose to do rope with others. Not everyone understands fatigue. So, if you experience it and try to negotiate it into your play, it’s really important that the person you are playing with understands what it is and how you choose to manage it, according to what you know works for you. (Please see the resources links below if you need help with managing your fatigue.)
Look for:
- Someone that takes the time to listen to your needs and will be proactive in meeting them.
- Someone that is willing to do any extra reading/research to learn about what you are experiencing, if they are not already aware.
- Someone that shows they care by taking your health needs as a priority, rather than just getting their play and wanting to move on before you’re ready.
- Someone that is aware of how your energy levels will be affected by physical, mental and emotional factors, and are willing to negotiate these in your play.
- Someone willing to understand your aftercare needs, which may fluctuate and need various amounts of time and strategies to manage the drop within a fatigue context.
- Someone that can manage an emergency situation should you need medical attention, both in terms of getting you the help you need and the emotional impacts of that.
Other tips:
- Find a time and place that suits you. Some environments at certain times of the day/week/year can involve a lot of sensory stimulation that can drain your energy stores, so factor that into your energy management strategy.
- Do not feel pressured into any previously set plans with your partner(s). Good partners will understand your need to go slow or not play some days.
- Do not feel guilty for having needs. Your needs are part of you and is not something to be ashamed of. You do not need to apologise for who you are.
- Pace yourself through the play session, planning in rest breaks, and even compete “switch off” moments if you need to recharge at any time. Make sure your partner is aware of this need and supports it.
- Plan your play according to your energy across a week, with other activities you usually do, to avoid a crash and burn.
- Do not push beyond your base line for that week, no matter how tempting, if you are not ready for it.
- Remember to keep about 25% energy store at all times, for your general daily living needs. Don’t run on empty.
- Think about how ready you are, and if any life events have depleted your energy stores, thus affecting your play needs.
- Factor in plenty of down time after playing in your aftercare plan. And make sure your aftercare is a permanent part of your pre-scene negotiations process.
Finding it difficult to play with others?
That’s OK. If your body cannot manage interacting with other people, because you need to keep yourself safe and well as a priority, there is nothing wrong with that. In fact, you’re doing other people as well as yourself a huge favour by minimising your risks of playing, and modelling good self care practice.
Self tying can be a good alternative. You are in control and can listen to your own body’s needs. There isn’t the additional external pressure and extra energy that is involved with communicating and playing with other people. You may also find self tying an empowering experience, because we’re giving our body what it needs, and can feel deeply connected to ourselves in the rope we create.
But if you need to rest, rest. Rest is so important. It is what we need to survive and thrive, if we suffer with chronic fatigue. It is part of our lives. I like to consider rest as an activity, something I need to plan for. We live in a world that tells us to push through and strive for more. However, my fatigue has taught me that that belief is not true. We don’t have to listen to that message. Slowing down, listening to our bodies, and showing ourselves as much compassion and kindness as we do to other people, is part of being human.
I hope this helps those suffering with chronic fatigue and their partners. Please share any other ideas you may have. Thank you.
Resources:
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
https://meassociation.org.uk/
Recovering from Long COVID Homepage
Cover image: single column tie on a horizontal bed post, reflecting how long term health conditions can leave us feeling stuck to our beds. All work by Dea Nexa.