Living with JHS

In my previous post, I talked about the struggles and challenges of living with an invisible illness Those that can’t be researched on the internet, or advised by a doctor, because, unless you live with an illness/condition yourself, you’ll never know.

So, as promised at the end of last week’s post, here are my tips on how to cope with these struggles and challenges.

Limits. Learn and recognise your limits.
Living with a chronic illness can be hard, because our limits vary on a daily basis, depending on how many “spoons” (from The Spoon Theory) we wake up with. Often, it can be tempting to keep pushing yourself because you really want to get something done, regardless of whether you’re got enough spoons, but pushing too hard can lead to trouble. It can leave you in bed for the next few days and even less spoons to use. Know your limits and don’t push yourself.

Prioritise. Having limits means that you can often be left choosing which activities and chores to complete. Sit and write a list of everything that you want to get done. Once you’ve done this, you can work out which tasks are more important and need to be done first. That way, if you reach your limit and can’t do anymore, you’ve done the most important tasks and the rest can be left until tomorrow, or when you’ve got enough spoons in the basket.

Planners. Carry a planner with you. It means that you can always know what’s going on. Brain fog can play a big role in chronic conditions, so having a planner with you can make life a whole lot easier, and organised! My Filofax is my life. If I didn’t have it with me, I wouldn’t know what was going on half the time.

Phone. For those of you thinking that a planner is a great idea but, actually, you don’t think you’d be able to carry it around with you, your phone is the perfect alternative. It’s something that you always carry around with you anyway so utilise the calendar, reminder and memo apps that are on there! They’re great alternatives, without having to carry anything extra around with you.

Friends and Family. Friends and family can be a major part of your support group, so it’s important to make sure you pick the right ones to put into that support group. This network should include the people that you can most rely on; the ones who are the most understanding about your condition; and the ones who are there for you no matter what.

Self-Care. I wrote a piece on self-care that featured on bsrealtalk.com; my top ten tips on loving yourself. Check it out here.

Expectations. Let go of your expectations. This is easier said than done, but something that will help you in the long run. Having expectations means that you are going to feel disappointed and let down at some point. Stop this from happening by lowering, or even expelling, those expectations. Most people don’t intend to disappoint you, and it’s not fair to hold them to it.

Honesty. Living with a chronic, and invisible, illness means that, often, people don’t understand the struggles that you go through. Be honest with the people around you, rather than pushing them away for not understanding. Tell them exactly how you’re feeling; how bad your pain is; how hard a small task is to complete; answer their questions. This will help the people around you understand a whole lot better, and maybe they’ll be able to help you better too.

Hopes and Dreams. It can be frustrating to realise that your dreams may not happen in the way you wanted. That’s okay. Alter your dreams to accommodate for this. Don’t upset yourself because you can’t do something you’ve always wanted to do; try and find something else that you can do instead. Happiness is key.

It’s okay. Most of all, remember that IT’S OKAY. It’s okay to cry and be upset because you can’t achieve something; it’s okay if you can’t remember something you planned to do only an hour ago; it’s okay if you need a rest day or few. Whatever it is, it’s okay.
Remember, there’s always going to be someone there for you when you need them.

Well there’s a few of my tips on coping with a chronic illness. As always, if there’s anything you want to chat about, you can contact me. Have a great week.