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

It’s okay to have a quarter-life crisis at 22

It’s okay to have a quarter-life crisis at 22

I just want to preface this post by saying I know I’m in a much more fortunate position than some people. I haven’t been forced to take a job just to make ends meet, and I have been given the gift of time to find out what I really want to do. However, this hasn’t made the past few months feel particularly easy.

No one really talks about the ‘post-uni blur’, unless you are lucky to leave with a job lined up, most people seem to finish their studies and are met with this overwhelming question of ‘what now?’ In some ways it still hasn’t hit me that my degree is over, mostly down to the fact my graduation is in February, but I feel like I’m stuck in some form of limbo before moving into a career.

Now, I feel lucky as BIMM were so big on us gaining actual work experience, I’ve not finished with only a degree, I have some great experience to show for it. I genuinely feel confident in applying for jobs, so I don’t want this post to just be about finding work because I’ve spent the past year driving myself crazy at the thought of working.

I feel as though I’ve gone through quite the identity crisis recently. I’ve spent a long time resenting having CFS/ME as I feel as though it’s stripped away most of the things that made me feel like me. I spent my entire childhood as a performer, and more specifically a dancer, and when I wasn’t doing something in the arts I was doing sports. I spent my entire life being extremely active, and now I barely manage to walk 20 minutes without needing to stop and rest for a while. The rational side of my brain knows this isn’t my fault, and wallowing around won’t change anything. However, on the bad days it feels like I’m more of an illness than a person.

I promise I am going somewhere with all of this and I have learnt a lot over the past few months. I’ve never really believed in ‘finding yourself’ or anything like that, however I guess I always thought a job would help define my identity. But being in an odd limbo of no longer being a student, not having a salaried job and no hobbies, it’s been a bit surreal. I’ve found myself feeling quite insecure in who I am.

On the flip side of this, I can see this as a great opportunity to work out what I want to do. Cal and I have had lots of deep chats about the future and been making some exciting plans which I’m sure I’ll talk about soon! Whenever I’ve spoken about this with others they’ve felt the same and I don’t think anybody every really knows what they’re doing in life. I think it’s all a waiting game and a bit of trial and error.

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

The positive side of invisible illness

The positive side of invisible illness

Now this may seem a strange title, however I promise I am going somewhere with this. It’s so easy when you have any type of long term health condition to get bogged down in the negatives of it. Which lets be honest, there are MANY, I am not going to lie having any kind of illness absolutely sucks. There’s no doubt in my mind that life would be a hell of a lot easier if I didn’t have CFS/ME, but I really do believe every cloud has a silver lining, this is just a big ol’ cumulonimbus and the lining is more of a thread. Nevertheless, I spend so much time talking about how important it is to stay positive, and I am generally a very positive person, so I thought I should write about some of the positive things to come out of this illness.

My Relationship is unbelievably strong. Granted, Cal and I have always had a great relationship, but we’ve also had a lot of tests to pass. We spent the first two years long distance and now we live together, it’s hard to ignore the pressure having a disability puts on both of us. Credit where credit is due, it can’t be easy being with someone with an illness, yet Cal never seems bothered by it (or he’s just VERY good at hiding it). I’m not exaggerating when I say if it wasn’t for Cal I wouldn’t be finishing my degree, I am so fortunate he chose to move to Brighton when he did because otherwise I would have had to move back home, I simply couldn’t look after myself without some form of care. On a bad day, Cal is my carer, whether it is bringing me food when I’m bed bound or helping me get changed, I have to depend on him. I spent a long time worrying that this would have a negative affect on us, it certainly isn’t easy but it’s all about balance, so when I am well we make up for it.

I’ve learnt the art of prioritisation. It goes without saying that it’s important to be organised with your time, but this really comes into play when you have an illness like this. I have to prioritise and be realistic with how much I can handle, now don’t get me wrong this is something I’m still awful at but it’s all about baby steps, prioritisation is probably one of the most useful skills to learn and now I have to master it.

I’m a bit nicer to myself . Strong emphasis on ‘a bit’ here as I have much more work to do on this, I’m a long way off where I’d like to be but it’s all about building a foundation. Now as someone who’s battled with depression since I was 16 ~ if not younger ~ I’m terrible for beating myself up over little things and putting a front up to everyone. Since falling ill I’ve had to stop being so hard on myself because I’m already tired enough and facing a constant battle in my head isn’t going to help.

If there’s one thing I’d like you to take away from this post, it’s that no matter how horrid a situation is, there will be something good to come out of it. I’ve said it before but 2018 really was the worst year of my life, I faced battles I never thought I would, but I know I’ve come out a much more resilient person for it. If I can do it, so can you.

See you next time pals x

8 Films That Have Inspired Me

8 Films That Have Inspired Me

Something a little different from me, however I was recently inspired by a podcast to write about some of the films that have inspired or influenced me in any way, some are just favourites of mine.

  1. The Parent Trap

The Parent Trap was easily one of my favourite childhood films, I remember just always wanting it on even if I was just playing. The story line revolves around to long-lost twins meeting at summer camp and deciding to trade places in order to get their parents back together. I have to admit I have only seen the later remake and not the original, but the fact they managed to create twins out of Lindsey Lohan blew my little child brain. It’s just such a feel good film, I love the soundtrack as well and the scenery throughout. 10 year old me wanted to grow up and live on a vineyard, even though I’d never drank wine, because of this film.

2. Moana

My next children’s film had to be Moana, now as a childhood my favourite Disney Princess film was always Pocahontas, that gal is a strong independent woman. However I had to give Moana the edge for this list as I truly did become obsessed with it at the start if uni, the animation and music are truly beautiful and it never fails to make me feel summery. Don’t get me wrong I LOVE a rom-com, but I think there’s something so valuable in showing children a female lead without a love interest, the friendship between Moana and Maui is captivating enough.

3. Mamma Mia and Mamma Mia Here We Go Again

These two films will hardly be a shock to anyone that knows me, I loved the first film and I didn’t think it was possible to like the second as much as I did! I remember going to see Mamma Mia at the cinema and loving it because I already loved ABBA and all the music, and throwing in the Greek setting was just spectacular. I am not oblivious to the cheese factor with Mamma Mia, and that’s where I think Here We Go Again is so cleverly written, it keeps an element of that cheese but there is so much more depth and emotion to the storyline. Lily James is literally stunning throughout, I want her wardrobe. They feel so special to me as I know how much my family love ABBA, I could write a whole blog post on my obsession with these films but I won’t, and Slipping Through My Fingers is such a powerful song (it’s actually mine and my mum’s song).

4. Rent

My other musical mention had to be Rent, I first watched it whilst in sixth form and I literally fell in love with it. I just had the soundtrack constantly on in my car. I’ll give a little background as I know it’s a less known than others in this post, it’s set in New York during the AIDS epidemic and follows 8 characters over a year as most live in near poverty. Also want to give a special mention to Jonathan Larson, he wrote the original stage musical and the morning of the first Off Broadway preview performance he passed away unexpectedly, so never got to see its reception. If that isn’t heartbreaking I don’t know what is. The musical, particularly the lyrics, is so powerful and celebrates life despite the sorrow. I could say a lot more about this musical but I shall refrain from ruining the story for anyone who wants to watch it.

5. My Sister’s Keeper

Admittedly, this is a bit of a random choice for me as I haven’t actually watched it in years. However, it is a film that I often reference and always remember, it focuses on a family with three children, one who has had cancer from a young age, the parents chose to have a third child to be a donor for the child with cancer. I think it’s such a clever concept that brings up a lot of moral and ethical questions. How far should parents be willing to go to save their child? Where do you draw the line? Obviously it is a very sad film, but I think it’s an important topic especially as cancer affects everyone. If you have watched the film I would highly recommend the book as it’s obviously in a lot more depth, but I’ll warn you the film is a nice version of the book!

6. The Last Song

As previously mentioned, I love a rom-com, I went to see The Last Song in Sydney with my sister and we expected to just to see a happy, easy-going rom-com but left in tears as it was so much more emotional than we expected. The film takes place in a small seaside town, with two children visiting their estranged father for the summer, it’s a Nicholas Sparks novel so obviously focuses on romance, however there is a lot more meat to the story, it shows the powerful relationship between father and children and it has a lovely message of forgiveness. Also think Miley and Liam have insane chemistry, obviously because they were actually falling in love but still worth a mention.

7. Notting Hill

Now this is a total (not) guilty pleasure, like I said I love a rom-com, and I love this late 90s era of Julia Roberts films. She is genuinely so stunning and graceful throughout the film, and I love seeing Hugh Grant be a bit more awkward than he usually is. The film as a whole, is just an easy watch, it’s feel good and set in such a cool part of London. I remember last year Elle and I were watching it in the lounge and slowly but surely nearly all the boys had come to join us and were loving it. I have to give a special shout out to My Best Friend’s Wedding as I was really torn between the two, in the end I asked Cal which I mention more and he said Notting Hill.

8. Random Film I used to watch on Sky Go

Technically, I shouldn’t count this as I can’t remember it’s name, however I used to be obsessed with this film that was on Sky Go. All I remember is that the main character was a guy who was having problems with his partner/wife as they couldn’t have children and I’m pretty sure they separate during the film, and then he finds out he actually has a son called Phoenix and keeps it hidden from his partner. Eventually the partner finds out, the mother of the son is diagnosed with a terminal illness and it ends with her reading a letter to Phoenix. It sounds cheery I know, but it was really good!! For the life of me I cannot remember it’s name and it has bothered me for years that I don’t know what it is, I have even tried googling ‘films with a character named phoenix’ and never had any luck, so if anyone knows what this film is, PLEASE LET ME KNOW!!!

See you next time pals x

Travelling with CFS/ME

Travelling with CFS/ME

I recently went on a (very fun) trip to Berlin with Callum and a couple of our closest friends, sadly at the moment I’m going through quite a dip in my health with CFS/ME, so going on this trip was quite nerve wracking as I had no idea how I would be whilst we were away. I’m so fortunate that our friends were so understanding but I also decided to use special assistance at the airports. This honestly made such a huge difference to the whole process of travelling, both our flights were early in the morning and the lack of sleep really takes a toll on my fatigue, so knowing I had help going through the airport.

Anyone who is perfectly healthy is aware of how much walking is involved with airports, but for someone suffering with a disability it’s a really overwhelming thought having to navigate through a busy place on a time constraint. It made my day so much easier having help getting to the gate and plane as I knew I would get there in time and I didn’t have to use all my energy getting there. Anyone with a disability and concerned about airports, I strongly advise you use special assistance even if there’s a chance you will be well on the day, there’s security knowing you can use it if you need it.

I think the biggest tip I have is planning your day out to what you can realistically handle (I know for a fact Cal, Izzy and Ali are laughing reading this), however I find it’s better to plan less for a day and feel you can handle doing more than planning lots and realising you won’t handle it all or making yourself ill. One of the biggest troubles I have with travel is feeling like I’m missing out or causing others to miss out, I looked back at our big family holiday to Cyprus and realised I’m only really in pictures from the evenings as I was merely too poorly to go out and do things. The only day out I had was a trip to a water park (also the trip out we did in Berlin was to a water park, everyone HAS to go to Tropical Islands if you go to Berlin), and it really upset me at the time that I missed out on so much. Now I look back on that holiday and think of all the things I managed to do rather than what I didn’t manage, I read 8 books in the two weeks we were away, I managed to swim everyday and play cards with the family. Just changing this mind set really makes a trip seem so much more positive and it’s what makes me still feel capable of travelling.

I’d be lying if I never felt like I was holding others back from a good time, but I just have to remind myself that if roles were reversed I would only want them to be happy and enjoying themselves. It has taken such a huge toll on my confidence having to constantly judge what I can and can’t manage, particularly when I go through a dip in health, however I know it won’t always be this bad and when it is I just have to be kind to myself.

It’s not always easy accepting you need the help, however as soon as you do, travelling becomes so much more achievable and enjoyable.

See you next time pals x

2018: The year that changed my life

2018: The year that changed my life

It seems strange to be posting about 2018 when we’re already mid-way through January, but I felt I couldn’t return to writing without wrapping up my year in some way. 2018 without a doubt has been the hardest year of my life, aside from battling CFS/ME, I lost three grandparents within 9 months. Don’t get me wrong the year was not only bad times, I made some incredible memories, however I know I won’t remember this year in a positive light. If you had told me this time last year the position I would be in now, I’d have struggled to believe you. As strong and positive as I’ve felt throughout the year, it’s impossible to ignore the impact losing my grandmas and granddad has had on me. I am extremely fortunate as I grew up with all four grandparents living only 15 minutes away from me, aside from when I am away at University, I saw them on atleast a weekly basis. I am so grateful for all the time I had with them, however it has made losing them such an adjustment to my life as I feel the gap they’ve left.

At the end of March I lost my Grandma Fox which completely turned my world upside down, we had always been so close as a family, but all of a sudden our daily life changed as we went from seeing her nearly every day to not at all. Although nothing can really prepare you for loss, we were somewhat prepared, we were aware Grandma had a terminal illness so really got to cherish our last months with her. I still find it hard walking into Lincoln Hospital knowing she has gone after going so much to visit her. The saving grace throughout this loss was my Grandpa Fox, we became so close to him over the summer, especially Cal and I, he was so strong and positive but also not afraid to express his sadness. I think his attitude really kept us all going as he led the way in carrying on.

Only 7 months later my Grandma Siva passed away, it felt like being thrown back to the start of the process as I’d barely begun to come to terms with losing Grandma Fox. The only comfort in losing Grandma Siva was knowing she was no longer in pain and suffering after months of battling cancer. Again, although we weren’t unaware of how ill Grandma was, I still felt as though I had been robbed of time. This made it quite hard to accept and I felt such a conflict of emotions from guilt to anger to just utter sadness, I know now this is allnormal but at the time it felt like I was losing control of my emotions. Going through grief is a really strange time as you wish the you could stop everything and just allow yourself some time to recover and be sad, but the world carries on around you and you just have to learn to adapt.

That feeling really came into play over Christmas as my Grandpa Fox passed away extremely suddenly a week before Christmas. I don’t think I will ever forget my phone call with my mum when she told me as I was just plunged into a state of disbelief, even though it’s been a month there’s still a part of me now that doesn’t want to believe he’s really gone. The last time I saw my Grandfather, my mother and I left his house saying how healthy he looked, he looked content despite everything that had happened over the past year, three days later he died instantly from a sudden heart attack. I’m still incredibly devastated at the loss of him, I still have moments of feeling angry that he’s been taken from us, however he didn’t suffer or even know what was happening which is what he’d said he wanted. The night before my father actually had an extremely vivid dream that there was a couple in our house and he watched them walking out the door, we know one of the last things my Grandpa did was buy and write a card for my parents thanking for them for all their support throughout losing my Grandma Fox. I can’t help but think my Grandma came for him, maybe that’s what my father saw, I don’t know what my beliefs around death are, but for now I’m finding comfort knowing they’re together.

I feel such a huge hole in my life at the minute without them all, however I know in time that will heal and it’s a credit to their characters. My Grandpa Fox used to say to us that everyone keeps telling him it’s going to get better but it isn’t, as heart-breaking as this was, my mum and I would say ‘It probably won’t get better, but it will get normal’. This feels realistic to me, at this point it’s hard to imagine feeling better about all this loss, but I know in time it will just become a part of life. It’s been so hard watching my family, especially my parents, keep going through this pain knowing there’s nothing I can do to take it away. You wish you could just wrap everybody in bubble wrap and protect them from anymore hurt. On the other hand, I got to enjoy 21 years of love and memories with my grandparents, which a lot of people don’t get to experience. So here’s to 2019 not necessarily getting better, but getting normal.

See you next time pals x

I’m back!

I’m back!

Well it’s been a hot minute since I posted on here, most of you know I recently finished my degree, so uni work really took over my life for a few months. But I’m back and excited to get back into writing as I’ve got lots of ideas for ME/CFS related posts and some random ideas too!

I have an exciting summer planned, ignoring job searching, with a lot of changes happening. To be quite honest, I just really want to have a relaxed easy summer. The past four years have felt like my life was going a million miles an hour, so much has happened and I’d like some time to digest everything. I’m in a lucky position where I can afford to take my summer off and enjoy my last break before starting work!

See you next time pals x

A lil CFS/ME update

A lil CFS/ME update

It’s been 7 months since I started this blog so I thought I’d do a little update on my CFS/ME, it’s been quite a hectic 7 months to say the least, but I actually feel I’ve made quite a lot of headway with managing CFS/ME.

The main thing I’ve been able to adjust is my routine, 6 months ago I would struggle to get through the day without taking a 2 hour nap, obviously that was extremely inconvenient. Days where I wasn’t able to have a nap would usually result in a day or two in bed, I was so fed up of being so restricted. It took a while but I’ve managed to cut out napping, I still have extreme days where I’m pretty much bed bound which just comes with the territory. Cutting out those naps has honestly made such a difference, I’m not going to lie it takes a lot of organising of my days and judging how taxing an activity will be, but it’s made it so much easier to actually do things. Just to tackle uni work I made a whole timetable for a month and it has definitely made me a lot more productive.

I think it’s made such a big difference living with Cal, don’t get me wrong I loved my years living in a student house and I really miss seeing everyone every day, but there’s no way I’d have been able to manage my illness being that independent. Since living with Cal simple tasks have got a lot easier, Cal can help me with cleaning, cooking and anything really. I know none of my housemates would have minded if I had asked for help, but it’s an issue of pride, no one wants to admit they can’t do simple daily jobs, whereas living with Cal a lot of the time I don’t even have to ask him.

That’s something that really hasn’t got easier, although I know I need to ask people to help me with things but I still find it hard and struggle not to get embarrassed. There’s been several occasions where I know it would have been a lot easier if I had just said I have a disability, for instance Cal and I were at a gig which we’d had planned for months but it was the day we came back from Berlin and I was SO fatigued. We ended up having to leave early as I was in so much pain from standing and I felt horrendously guilty for cal and upset we’d had to miss the end. Annoyingly, there were a couple sat on stools at the edge of the venue and a lot of the time they would stand up to watch, and if I had just had the confidence to say I needed to sit down then I probably could have made it through the rest of the gig.

I’ve really tried not to dwell on instances like that but it’s hard not to get frustrated with yourself. In terms of where I am with my illness, I feel I’ve come a long way physically, sadly I get a lot more joint pain than before, however I can see such an improvement from where I was 6 months ago. I know I still have a lot of work to accept and manage this illness emotionally, but I can see everything I have managed to overcome since being diagnosed and that’s what keeps me motivated to keep trying.

See you next time pals x