Anyone with a chronic illness/chronic disease will know how HARD it is to pace. We know that the spoon theory is out there but what does it really mean? Some days some tasks seem to take up more spoons than others. We often run out of spoons by the late morning and have already crashed and burned before lunch. We want to have high-flying individuals, living life to the fullest and being able to keep up the pace. This really isn't the case, everything has to be planned out, thought out, organised and that zaps the fun out of everything. On the good days we push too much and over-do things because we get excited and on the bad days it seems that often tasks take longer and we are far less productive. Which is irritating to us. Nailing the pacing game, is an never-ending learning lesson. We have to learn adapt as quickly as possible and listen to our bodies over the outside world. We face a lot of judgements, in whatever activity we are doing and this really does affect our mental health because we don't want to be seen as the lazy one. Balancing out our own needs and silencing others is something that doesn't sit well with many of us. We really do struggle. Over time, we become more irritable and often silence our own feelings rather than the judgements and expectations. We expect ourselves to be the fully fit, active and productive 25 year old our friends are. We don't want to be the odd-ball, the one that seems to not be 'kick starting' their life because they are moaning about health issues. We aren't moaning though, this pain and struggle really IS our life and we wouldn't wish it on anyone. It is hell. So what can we do when we need to pace a lot better? 5 steps that I think may be helpful are:
1. Communicating: talking, sharing and being open, honest and truthful about your symptoms, pain and suffering is key. If you want to keep the judgements and expectations realistic and not upsetting to you. You must give people the opportunity to TRY and understand. People can then also offer support and help, which too many of us is a major life-line.
2.Mindful activities: whatever you fancy, that is seen as a hobby to you. Something you can use as a positive escape, calm the mind and have time out of 'life' but still being productive. This may mean taking more yoga classes, mindful colouring, cooking and so on. Make the activities enjoyable but also something that doesn't zap you too much.
3. Be realistic: appreciate that you are VERY POORLY and you are not the 20 something year old person, like your friends. You do need time out, you have to pace, you need breaks, you have highs and REAL lows. You have to really listen because it could be really dangerous for your health.
4. Understanding: it's beyond hard, we lose a lot of people - friends, family, loved ones and it is hard but if people don't understand or TRY to understand you have to let them make their judgements and leave. You can't be explaining yourself or the actions you have to take to protect ourselves and health from burning out.
5. Be flexible; we can't predict how we will be day to day. Each day is a new challenge, a new fight. Always different. We don't have a crystal ball and we don't know what the future holds.
I guess it is a learning curb and we have to learn on the job. We will make mistakes. We will lose friends through lack of understanding and we will still crash and burn. We just have to stay true to ourselves. Make sure we do as much as possible to aid our health, not hinder it. We are warriors and no matter what anyone tells us. We shouldn't doubt or question ourselves.
I want to hear from you though, what are your tips for coping, dealing, balancing and living life with a chronic illness?
Please share your the rules you live by.
Thank you for reading.