Making Life With an Invisible Illness a Little Bit Easier

Making Life With an Invisible Illness a Little Bit Easier

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.

Prioritise comfort

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.

Be realistic

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.

Communicate selectively

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

A Little Trip to Sicily

A Little Trip to Sicily

At the beginning of June I went away to Catania, Sicily with one of my best friends for a few days. It really was the perfect trip to just relax and eat some amazing food! In all honesty we chose Catania quite randomly, I was just looking through Airbnb to see what was reasonably priced for that time of year and stumbled across Catania. Now if you’re the kind of person who likes to go away and constantly do things, this may not be the city for you. I would 100% recommend a day trip if you’re nearby because it is still a gorgeous city, however it really isn’t that touristy.

One of the main things I liked about Catania is it actually felt like a very authentic Italian experience, although most people understood English, a lot of the time we were spoken to in Italian which made the trip a lot more interesting. Honestly, I really enjoyed the peacefulness of the city. I was actually able to walk around the whole time, it was nice that we had time do everything we wanted to without compromising on anything. One of my best pieces of advice I have for travelling, is make sure you like where you’re staying. You don’t have to spend a lot of money to find a comfortable place to stay, but I know with my CFS/ME I spend a lot of time relaxing and resting there.

In our Airbnb, we had a great outdoor space to chill in, we must have spent most of our time away there. It was so nice after being out and getting tired to come back and be able to rest without feeling like I was spending all my time in bed. The trip was the perfect way to just relax after finishing uni. I learnt a lot during this trip, I had a really hard experience with a group of passengers on our flight making me feel uncomfortable for having special assistance. Fortunately, it didn’t put a dampener on our trip but I hope in the future people are more accepting of invisible illnesses, and I know I am less likely to be tolerant of discriminatory behaviour.

See you next time pals x

Managing a setback

Managing a setback

On my CFS/ME course they use the term setbacks to talk about anything that creates struggles for us when managing our illness. To a certain extent, the past month’s events have been a huge setback in my illness, I have become significantly more poorly, but it has been really hard judging when to let myself feel sad and grieve, or when it is impacting my illness and making me feel worse. 

In my previous post I spoke about positivity and how important it is to remain optimistic with this illness, it serves no value to feel sorry for myself. What I’m really struggling with at the moment is remembering that in the past year I’ve lost two people very close to me, anyone without an illness would be struggling to and I have to be kind to myself because I have to manage an illness and manage bereavement. 

My plan for the next few weeks is to put myself first as much as possible and put my illness back at the top of my priorities. It’s okay to be a bit selfish in these circumstances. If someone I knew was in my position, I’d be telling them to put themselves first, so I should take my own advice. 

See you next time pals x

A little positivity

A little positivity

It’s been a hot minute since I wrote a blog post as I sadly lost my Grandma at the end of October, so needed some time to process and recoup. I don’t want this to seem selfish but obviously this has taken a huge toll on my fatigue, it doesn’t take a medical professional to connect stress to illnesses, I have seen a huge decline in my health the past few weeks. On the other hand, I think it’s important to remember that there is a reason for that, I’d come so far with managing my fatigue and was actually going through a very healthy patch, there’s no reason I can’t go back to that.

One of the biggest things I’ve learnt with CFS/ME is how vital your mindset is, now I’m not saying I never have days where I don’t feel down about being ill, I just know how important it is to keep positive. I count myself lucky that I am able to keep motivated to get as well as I can, it would be so easy to just settle and believe that I’m always going to be this ill. It took me a long time to get to this place, a huge part of it was accepting that I am chronically ill.

I pride myself in being optimistic, particularly as someone who has suffered with depression for years, it’s never prevented me from being hopeful for better. I will put my hands up and say I am guilty of getting easily frustrated when people are pessimistic, I’ve just never seen a need for it. I understand being realistic however there’s a difference between the two, it must be so draining to constantly think negatively. Maybe it’s because I have spent years teaching myself to separate the negative thoughts that come with depression, so therefore don’t understand why someone would voluntarily always take the cynical side of things.

I hope this post will help some people that find themselves stuck in negative thoughts, even I find it draining when someone is constantly moaning so goodness knows how they feel. It’s okay to be sad and to moan but you have to be able to pick yourself up and focus on what is really going to help you. A little positivity can go a long way.

See you next time pals x