I recently went to speak at an CFS/ME group I was a part of last year, and it was a real reminder of how far I have come over the past year. At the meeting I had to give one piece of advice for all the partakers and I said, ‘there’s always another option’. When you have an illness that affects everything you do in life its easy to feel as though you’re looking down a corridor of locked doors. Having been in that position many times, I can promise you, you’re not. Sometimes you just have to take a different path to get to where you want to be. This applies to the simplest things, whether its walking to the shop and you need to stop and rest or something longer term. Work out a route that works for you.
In terms of illness, I am still going through rough patches, but I’ve picked up a few things that make general life easier. I thought I would share some advice that are in some ways specific to CFS/ME but can be used for anyone suffering with an invisible illness.
A massive part of this is physical comfort, but also your wellbeing too. Wear comfortable clothes, find a balance of making yourself feel like you but not comfy edition. When I first fell ill, I had the tendency to just wear joggers and pjs all the time, whilst there’s nothing wrong with that, I became incredibly anxious that I always looked like a slob. If I know I have a long day ahead or I’m feeling particularly fatigued, I will make sure I’m not wearing anything too restrictive. On the wellbeing front, I will make sure who I’m interacting with are people I feel comfortable with. This all boils down to you as a person, but I know if I have a plan coming up that I feel uneasy about, I will spend days if not weeks feeling anxious leading up to it. Eliminate anything that’s causing you any extra stress.
If you have a jam-packed day planned you might feel you have no choice but to power through, when really you need to pace yourself. Obviously, some things are unavoidable, but spread your plans across your time wisely. When you have a busy day, plan rests or let someone know who can help you if needs be. It can be tempting to think that you will pack all your plans into the morning and then rest during the afternoon. While this may work for some people, it’s likely you’re just going to crash and burn out. Be honest with yourself, if you think you’ve got too much on shift your plans. No one will expect you to make yourself ill to see them, and if they don’t understand, they’re not worth your time.
I’m a big believer in being open with people, don’t be afraid to tell people what is going on but really think about who you’re talking to. You don’t need to tell everyone you meet, frankly there are some people that just won’t understand. Yet if you do find someone you can trust, open up to them, remember no one is a mind reader. 9/10 people will want to know how they can help you, but if you don’t tell them, they can’t. I spent a long time thinking that I couldn’t talk about my illness because no one understood it the way I did. CFS/ME can be such an isolating illness so if you don’t take the opportunity to build a strong network, it’s going to be a harder battle.
Give yourself time
Allow for extra, if not double, the time it takes you to do things. Even if you don’t need it, it’s better to have and not need, than need and not have. I find if I split up tasks and rest in between it’s much more manageable. For example, I used to struggle with getting ready for bed as I would find I’d be so tired by the end of the day the whole process was hard work. Now, I try and divide the process up through the evening. I’ve always been the kind of person to get into my pjs as soon as I get home, but now I’ll sit and take my makeup off and sort my hair out over the couple of hours that we’re watching TV before bed. Then by the time we’re actually going to bed all I have to do is brush my teeth. It may sound like an obvious thing, but people underestimate the difference it can make.
Focus on the short term
As someone who is very future focussed, I struggle to see the here and now. Over the past two years, I have had to learn how to focus on the short term. It’s really easy to get bogged down in the ‘what ifs’, ‘what if I’m not going to get better?’, ‘what if I can’t work?’ and ‘what if I have to live like this forever?’. None of these questions have an answer worth thinking about. When we fall ill, I think we can’t help but wait until we are better again. You can either waste your life waiting for something that may not come, or you can focus on what you can do in the short term and let the future pan out as it will. Take each day as it comes, or if you’re naturally a planner like me, focus on things month by month. At the start of the month, I will breakdown plans I have lined up, things I want to get done and just some general goals I want to achieve. I don’t really care whether I achieve them or not, they just help me stay focussed on what is happening now.
Don’t be ashamed
I personally think this it the most important thing on the list, yet I am still terrible for this. When I was first ill, I spent months (I still do sometimes) torturing myself thinking ‘I’m 22 I shouldn’t be bed bound for half the week, my life shouldn’t be like this’ Not only is that false, it doesn’t help me in anyway to think like that. The negative mindset doesn’t change anything. I can’t count how many times I’ve told someone I have a chronic illness and they’ve replied saying they do too. If they were in my shoes, I can’t imagine ever looking down on someone, so why am I doing it to myself? Instead of feeling frustrated or sorry for yourself, try turning it around and think ‘what would I say if it was my friend feeling this way?’. It might sound cheesy, but it can really help put things into perspective.
If you’re suffering with an invisible illness, I hope these tips can help ease your life a little. Remember, your health and wellbeing should always be your priority. See you next time pals x