Living with a chronic illness means that I have to schedule my time outside of the house almost militantly. I never have appointments or events on consecutive days because I have to give my body time to recuperate. I also never plan too much for one week.
There are weeks when I am free from hospital appointments, so I like to make sure I plan a day of going out and doing something I enjoy – which let’s face it, is usually shopping. I actively try to plan a ‘me day’ like this once a week if I’m able to. This either includes joining my boyfriend on a dog walk, going shopping (told you!) or photographing myself in an outfit for my Instagram account.
To some people it might seem bizarre to plan a day out like this, but when you’re living with chronic pain and usually spend seven days a week indoors, you have lots of time to think about what is important. And going out to do things that don’t involve seeing a doctor is really important to me.
Pre-planning is essential
Going out isn’t as easy as just getting up, getting ready and leaving the house. There’s a whole process that takes place and every outing has to be scheduled in a few days before. I could never wake up, jump in the shower, wash my hair, style it, get dressed and then spend the entire day out - just writing that filled me with dread.
It’s an absolute no-go for me to venture out the same day that I shower. I know this seems unthinkable to many, but something as simple as a shower can be exhausting and painful with my conditions. I might as well be asked to climb a mountain. I usually shower at night so I can go straight to bed afterwards. There’s zero chance of me being able to leave the house after that.
Taking that into consideration, I have to plan my bathing times around when I’m going out, so that I’m fresh for my outing and don’t look like I’ve been dragged backwards through a hedge.
Schedule in rest days
Other than bathing, I make sure I have a few full days before and after each outing to rest. I schedule up to three days before so I’m able to conserve as much energy as possible to enjoy the day that I do go out. I then take another three days after so I can rest and not worry about rushing to do anything else when I’m running low on power.
This again all depends on the event or appointment. If I have an appointment with my GP, I don’t usually need to spend three days before and after recovering – I’d only usually take a day. This is because a single, routine appointment does not require too much effort.
But something more taxing adds a whole new level of complexity. Some time ago I was filming with a brand in London and had to spend the week before totally chilling out. I knew that I’d be having a really long day and I didn’t want to push myself beforehand and risk not being able to perform on set.
I also left the week after completely free just in case I flared up, and it’s a good job I did, because I really paid for it. During the day my shoulder was playing up and although this wasn’t anything I couldn’t handle, by 11pm I was really struggling. I eventually realised I’d dislocated my right shoulder, and my neck, left shoulder and hip went into spasm. The pain was excruciating and I ended up with a hot water bottle on my shoulder and hip.
It took me four days to fully recover and get back to the normal pain level that I’m used to managing.
When I finally felt better, the cycle of planning started up again.
Conserve energy for the important things
My life with chronic conditions is all about pacing and planning as it’s really important not to push myself to the point of agony. Sometimes that can’t always be helped, and sometimes that’s okay.
That day I spent filming in London was an amazing, once in a lifetime experience, and if I didn’t allow myself to go because of the pain it might’ve potentially caused, I would have missed out. Although it did cause me a lot of discomfort and although I cried that evening because the pain was so intense, the day out and the memories I made were so worth it.
Don’t be too hard on yourself
I have accepted that I’m going to live a life in pain, but I refuse to let it stop me from experiencing amazing things. Yes, I plan my week meticulously, but I do this so I can enjoy life’s simple pleasures, like walking (wheeling) my dog or going out for lunch with friends.
Planning also helps me to have some control over my otherwise chaotic and pain-filled life. I have no choice when a flare up happens, when I might dislocate or experience a migraine attack, but I can control my diary. And I can try to make things as easy as possible. However, as much as I organise my days, I can’t plan a fall or an unexpected flare up. So I’m not too precious with my diary and I always allow myself some leeway.
If you can plan your week and you can schedule rest days, I highly recommend it. Yet remember this is not set in stone. Always allow yourself to move things around and have an extra day in bed if you need to.
There’s nobody you have to answer to but yourself. And your health and wellbeing is the most important thing.
UK/MED/19/0166 July 2019