Respite is one of ‘those’ words. A healthy and necessary concept but not necessarily easy to achieve. It is imperative to be able to have a break from something that is challenging, difficult, frustrating or ongoing. It is good on so many levels. For the soul, the mind, the energy levels, the body and those you mix with. Knowing you have a break or a rest coming up motivates you to hang in there and keep going. It helps with planning, prioritising and setting goals.
The Oxford Dictionary states the meaning of respite as :- a short period of rest or relief from something difficult
I think it is fair to say that respite is crucial for everyone and for someone who lives with a chronic illness it is imperative. However, and here is where it gets challenging, how do you get a break from something you can’t get rid of? Or if you stop doing the things you need to do for your condition, that it becomes life threatening? All of a sudden, respite seems almost unachievable, or in the too hard basket, scary, unknown and potentially fatal.
I get that the one thing you may want respite from you can’t have. Whether you want respite from the pain you are in, the fear you live with, the medication you take, the responsibility you carry, the equipment you take with you, the activities you have to do or the clothes you can’t wear. I get it!!!
However, there is a way to honour both the necessity to have a break and still be responsible and manage the demands of your chronic illness.
It is to discover what respite you can have.
This is crucial for surviving life with a chronic illness.
Yes, it will look different, yes it will require effort, yes it might look lame to others but I encourage you to make it meaningful and energising and wonderful for YOU. It is you that needs the respite so you are the one who is going to need to create it. If you work this out, then it will be worth more than its weight in gold for your journey. Life with a chronic illness is a marathon, this is not a Usain Bolt sprint race. You need to pace yourself to ensure you have the stamina and endurance to not just survive life but truly live it.
I am a very disciplined person so if you tell me to do something then there is a pretty high chance I will do it exactly as you say and I kind of like it that way, it leaves the decision making out for me (which has come from a fear of failure and getting it wrong – not helpful at all). However, this whole respite issue is something that cannot come with directions and a list of to do’s. Sorry!!
What I can do is give you some suggestions to experiment with and see if they work for you and if you still need assistance and guidance, book in a session with me and we can go on the journey together.
So here are some tips to consider when planning respite with a chronic illness
- Accept that it is going to take effort and planning to have some respite.
- Gather a tribe around you. They may be people who live with your chronic illness, they may be people who love and support you or they may be your medical support team. It is unwise to plan for respite in isolation. You will need help.
- Reframe what respite means to you. Uncover what it has meant for you in the past as it may need to be reframed with a new meaning. Don’t rely on what society says it means, it is highly likely going to mean something different to you with a chronic illness and that is okay and necessary for you being able to achieve it. Respite may be getting someone in to cook meals on a weekend for you, it may be sleeping without setting an alarm but having someone wake you for medication, food or fluids. It may mean exercising and having someone carry your medication or food or medical equipment. It might mean watching endless comedy shows with your bestie and laughing till your sides hurt.
- Spend time discovering what you believe about achieving respite and the likelihood of it occurring. Do you believe it is possible? Is it possible for you to enjoy it and get value out of it?
- Be creative. Respite is going to look different.
- Respite is not a once off event, it is about working out how many times you need it to keep going in this marathon. Is it a once a month, once a quarter, half yearly activity that you need to do to keep going? Factor it in to your diary to ensure you plan for it.
- Don’t give up!! If what you did didn’t give you the respite you need, do something different next time. This isn’t a destination to arrive at, it is a journey so enjoy it and all that is has to offer.
- Make it FUN!!! Life with a chronic illness can be very serious sometimes so ensure that your respite includes aspects that you enjoy and gives you pleasure. You so deserve it.
Much love, Lisa xx