‘Happiness can be found even in the darkest of times, when one only remembers to turn on the light’ – Dumbledore
When you’re diagnosed with a chronic illness, it doesn’t come with a guide. I had no one in my life that I could talk to that really got what I was going through. So I turned to online friends. There is an abundance of people online who are ready and willing to talk and help as much as they can. So I thought I’d share a little ramble about how being diagnosed with a chronic illness has impacted my life in ways I didn’t even think were possible. I hope that it might help someone who has questions or is worried they are the only ones who feel like they don’t have a clue what is going on. I promise you, you’re doing an amazing job!
Sudden body & mentality changes
Being on steroids for 8 weeks meant that I put on a lot of weight, I suddenly had terrible skin and my hair started to fall out. And even after being off the steroids for over two months, I’m still struggling with my skin, trying to maintain my weight and trying, with not much success, to stop the hair loss. The mood swings I experienced on certain medications were horrific. One minute I’d be happy-go-lucky and seconds later I felt like I could break down in tears. It was a huge shock to my system and I hated feeling like I wasn’t in control of the way I felt anymore. Luckily I’m now on meds which help control that and I have more good days than bad but it’s hard knowing that sometimes you’re not in control of the way you feel and there’s nothing you can do to change that.
Makes me question everything I do
Simple things, like popping to the shop, unfortunately aren’t that simple for me anymore. It can take all of my energy just to get dressed and some days I can’t stray too far from my bathroom so the idea of leaving the house becomes laughable. Going out for the day means I have to think about how long I’ll realistically be able to sit in a car, when and where I’m going to be able to eat and whether I’ll even have the energy to last the whole day without a nap. The first thing I do now whenever I go anywhere, is to make a mental note of where all the toilets and places to eat are. Things that I never had to really think about or question before have suddenly become my number one priority and sometimes its super hard to explain that to people.
Become aware of how different things affect me
Sometimes eating or drinking something that doesn’t agree with me can mean that I end up suffering for a few days or even a few weeks. I have brand new limitations and I’m still coming to terms with that. I can’t walk as far or for as long as I used to, I can get tired from just walking down the stairs, my body aches in a way I never thought possible, I sometimes struggle to stay focused and on really bad days I have huge mental blocks and struggle to even talk to people. I’ve never experienced anything like this before, and it’s even harder to deal with when people just assume if you’ll take your meds you’ll be fine. It’s never that simple.
Changed who I am
I have such a different mentality to that of a year ago and that’s had a huge impact on my life. I see everything differently now, everything comes with some form of an obstacle. I’ve had to learn to respect my limits and not push them and sometimes I’m not the upbeat, outgoing person I used to be. It’s frustrating knowing that something like an illness can change almost everything about you.
However, and I know this might be hard to believe, I have found some positives in this dark place we call chronic illness. When I look back over the last 6 months I notice glimmers of light and hope all of the place, it really is amazing to see how much can change, especially for the better, in such a short amount of time.
Appreciate time with family & friends
On super crappy days where I literally cannot get out of bed, I end up having to cancel plans that I’ve sometimes had for weeks. This means it can be hard to stay in touch with my close friends and family. However, because of this, I appreciate the time I do spend with them so much more. I have some of the most amazing friends, even though they live miles away and I won’t see any of them for another month, that have been so so supportive and just make me even more excited and much less nervous about going back to university. Every moment I get to spend with my family I am so thankful for, because they have been my rock through all of this and they have been nothing but supportive. Sure on the bad days I have to explain that they are going to have to be patient with me because I’m having a slow day, but they always are. They always listen to what I need and always try to help in any way they can, and most of the time the only thing I need is for them to be there waiting for me to have a good day.
Learnt how important it is to be open and honest
I’ve always been the sort of person who kept how they felt to themselves or put others first. The last few months this has had to change. Every day I have to consider how I’m feeling both physically and mentally. Sometimes something as little as popping to the shops could be the difference between me getting home and showering or going straight to bed. People don’t understand that sometimes even getting into the shower and washing my hair can feel like a mammoth task. But I’m learning how to tell people how I’m feeling and if I need something in particular. It’s mostly small things like letting people know that I’m having a bit of a slow day so if I’m quiet or seem to be a bit out of it, I’m not being rude, it’s because I’m having a rough day and there isn’t much I can do or asking people to slow down if they are walking too fast because I physically can’t keep up. Being able to be this open with people has been amazing and has helped me to no end. I’ve realised that unless you’re honest with people about if you’re struggling or having a particularly bad day there is no way for them to help you.
Made me realise how strong I am
There have been a fair few days over the last few months where I’ve woken up and wanted nothing more than to stay in bed and cry myself back to sleep. But I don’t because that wouldn’t help me. Don’t get me wrong if I’m having a bad day then I’ll let myself just chill and won’t pressure myself to get anything done. But I make sure that I still get up and shower, I make sure I eat, talk to my friends and watch my favourite movies. While I’m not doing anything that will make me feel worn out or feel any worse, I’m still engaging and doing things that make me happy. Now I know that I’m stronger than my bad days, this is my life now so I have to do everything I can to make the adjustments I need to make my life feel normal again and try to get back to the place and the person I was before all this happened.
Changed who I am
Yes, I know I’ve already said this but hear me out. Yes it has changed who I am and in many ways it doesn’t feel like its been a great thing but there are moments when I feel like its been one of the best things. I see things so differently now and I know that I’m going to have to work a bit harder to get the things I want in life, but I’m ready for that, I’m willing to put in that bit of extra fight because this disease in no way dictates who I am or how I’m going to live my life. I refuse to let this disease control me because I control it. It has made me strive harder to reach my goals and made me more determined to do the things I want to do. Its made me so much more compassionate to people because I understand now how something like being ill can effect you both mentally and physically. I see every day as a new challenge, and sometimes I’m not up to the challenge and that’s okay but some days I smash even my own expectations and that’s an absolutely awesome feeling. I amaze myself daily by overcoming tiny milestones on this new journey and that makes me so proud. So in some ways I’m thankful for everything that’s happened to me over the last few months because I’m the happiest I’ve been in the longest time and that is definitely not something to cry about.
Feature Image – Twitter