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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

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Let’s talk about names

 

People that have known me for over three years will notice I’ve changed my name from Ellen to Ells, it started as simply a nickname but soon developed into my full time name. Don’t get me wrong, I will never legally change it as I’m sure there are times in my life where I will go by Ellen, I also wouldn’t want to out of respect for my parents after all they chose this name for me.

I have always gone by a few names, people may not know that my full name is Ellen Jayne Sivakumaran, I mainly go by Ells as I’ve never really been a fan of Ellen. Majority of my family call me Ellie, although they also speak Tamil and I found out when I was 19 that Ellie (probably not spelt like that) is rat in Tamil, so my family had been calling me rat my entire life without me knowing. My Dad calls me Elsie as he’s always called my sisters and I by nicknames, personally Elsie is my favourite sometimes I wish I’d decided to just go by Elsie but I also like that it’s my Dad’s name for me. I call my Dad papa majority of the time and I’d love to say it’s a really sweet story as to why but it actually started because he has terrible selective hearing and overtime he just started to stop listening to Dad. I do think it suits him as well, Papa gives you the image of big, cuddly and happy guy, and my Dad is certainly a great hugger.

The nickname Ells was started by my sisters when I was younger, and I then changed my social media names to Ells to keep them private from people that only knew my by Ellen. It slowly became habit that people would call me Ells and now I even introduce myself as Ells. There is a big part of me that cringes when people call me Ellen as it almost doesn’t feel like me anymore, not to get too deep, there’s only a select few people that call me it now. It’s not as if I have an emotional connection to being called Ells, but there’s an element of being called Ellen that reminds me of being in school and I feel like a very different person to who I was in school. In some ways it makes sense to me to be called something different as I am different.

Most of what this all boils down to is habit, I am used to being called Ells now just like I am used to being called Ellie by my family and Elsie by my papa. Maybe it seems insignificant to some people but it’s important to me and I think people should respect that I want to be known as Ells. Your name is one of the first things people learn about you and it seems strange how little control you have over it, not saying that we should decide our own names, just that we’re allowed a bit of artistic license with them.

See you next time pals x

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What I wish people knew about CFS/ME

I wouldn’t wish this illness on my worst enemy, but sometimes I wish people understood what it was like to suffer with CFS/ME. I thought I would talk about some of the things I’d like people to know.

It’s not a choice

I know it may sound obvious, but I think it’s easy for people to just think I’m being lazy or emotional when actually whatever is happening in my body is for more complicated. Believe me, if I had the choice between spending all day lying down or being able to get through the day without stopping to rest, I know what I’d pick. Even when it’s a joke it still stings if someone calls me lazy, it’s not like I have an option.

The FOMO is gutting

It’s a cliche but honestly the fear of missing out can be a horrible part of this illness. There’s nothing worse than watching your friends be able to do whatever they want whilst you’re so restricted by an unpredictable illness.

I don’t want sympathy

I understand this illness is pretty rubbish, there’s no sugar coating it, there’s nothing fun about being chronically ill. However I’ve never needed people to feel sorry for me, all I would ask is for their support.

Ask me questions

When I first suffered from CFS/ME there was a lot I didn’t understand about the illness, it’s obvious that people who have never heard of it are going to struggle to wrap their heads around it. The best thing is to just ask me any questions you have, or go search online, the better you understand the easier it will be to help.

This is a serious illness

Although it’s not always obvious, this illness has literally changed my life. In the past year I’ve had to completely change my career plan, the way I live, my diet, my social life and keep a positive mindset. It’s not just feeling tired, my body has so many symptoms that I’m still discovering today – a fun new one that has emerged – my jaw clicks and locks like there’s no tomorrow when I’m tired.

I’m very good at hiding my fatigue

It’s a talent I’ve accidentally mastered, I think it’s an automatic response to just put a guard up, pretending I am feeling okay rather than admitted how ill I actually do feel. Don’t get me wrong, there are times I can’t hide the fatigue, however majority of the time I’m feeling a lot worse than I’m showing.

See you next time pals x

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How my relationships have changed

I decided to take a little break whilst I settled back into university and in all honesty I’ve been fairly unwell the past couple of weeks. It’s easy to remember how these dips in health affect me in the short term but they really knock me back emotionally for while, I find I’m very sensitive for the next week or so as I’m recovering. I made a very painful mistake in overdoing it on the 26th as I had my group session and university enrolment all in one day which meant I was out of the house from 9:30-5 without any breaks or food, and it’s taken a full week to feel better from it.

I thought I would write a post about how my relationships with people have changed since falling ill as I’ve had a lot of time to think about it recently. Now I am very fortunate majority of people around me are unbelievably supportive, even those who didn’t necessarily understand at first have taken the time to learn about it and try to be as helpful as they can. As with everything, there are a few who blatantly don’t get what it’s like to be chronically ill especially if they only see me at my peaks, which I understand. These tend to be the people that make things a competition, as though life is always harder for them, I find it’s easier to humour them and let them win the battle as it isn’t worth the energy.

I think the biggest change I’ve had to adapt to, is how dependent on everyone I am around me, I’ve always been very independent in looking after myself but with CFS/ME I have to depend on others. I have to ask people to help me with things and trust that they’ll be patient with me. As I’ve mentioned before, my boyfriend and I have I just moved in together, which is a blessing as I truly doubt I’d have been able to look after myself in a student house for another year. Don’t get my wrong, my housemates last year were angels and never failed to cheer me up when I was having a bad day but you don’t want to depend on them to wash your dishes or clothes for you. When I’m poorly Callum is effectively my carer, he will help me do everything whether it’s just fetching me things or helping me get dressed. I’m so fortunate to have someone who can look after me like that.

I’ve really learnt a lot about trust during the past two years, I had to judge who I could trust to understand my illness, especially how unpredictable it is. I’ve been very fortunate throughout my life to have had a handful of friends that I’ve grown up with that I knew I could depend on no matter what, but at university friendships are newer and being so far away from my family in Lincoln it was so important to me to know I have support in Brighton. I am lucky that at my university I have a big group of friends, majority of my course are all friends but even outside of that there are several people I know I could turn to in a time of need. I’m lucky to have formed a sort of dysfunctional family around me that understand when I can’t make social events or have to leave early.

I think it’s so important to surround yourself with positive people at the best of times, but the past year has really showed me how vital it is to have a strong support system around me.

See you next time pals x

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Let’s talk about animals

I’ve never been the kind of person to push my views on someone else, particularly as I feel people are very sensitive about vegetarians/vegans expressing their views. However I wanted to write a post on my views as it’s something I’ve discussed at length with my friends and family.

I’ve been vegetarian for 4 years now, in all honesty when I first turned vegetarian it was purely down to a dislike of meat not so much the ethical side, although in the past couple of years it’s something that has really meant a lot to me. As blunt as it sounds, I find it completely baffling how someone can be an animal lover but still enjoy eating meat. I know it’s down to disassociation, and I understand that to a certain extent it’s the circle of life, I just struggle to take someone seriously when they say they love animals but still eat them. Maybe that sounds harsh, but I simply find it hypocritical.

Since we have no WiFi currently I spend a lot of time watching daytime TV, particularly come dine with me. Several times on the show hosts have served meat from animals they raised themselves and named. At first I was disgusted as it felt so harsh, but after watching the guests reactions and one woman spoke about how she thinks if you’re going to eat meat you should be a conscious meat eater, you should be aware of where it has come from and the reality of how it’s ended up on your plate. That really resonated with me, although it’s something I would never choose to do, I do think people should be more aware of where their food comes from. No matter what people say animals are sentient beings, they may not have the same complex emotions as humans but they grow relationships amongst themselves and with other species.

I am constantly dropping in and out of veganism and truly believe one day I will make the complete switch. There’s no reason I haven’t stuck to it other than pure selfishness as I choose to eat whatever I want, regardless of what has been sacrificed for me to have it. Majority of my day to day food is vegan, bar the odd pizza or chocolate (lol), however it’s something I could easily commit to. There are so many myths that we grow up believing, we do not require a huge amount of protein, for thousands of years majority of people survived from mainly carbohydrates as it was all they good afford. The obsession with protein simply relates back to how cavemen would hunt to seem macho, however their diets were mainly grains provided by women, not to dive into feminism but obviously it wasn’t until recent decades that what women provided was worth a lot. Meat was previously a sign of wealth as only royalty and the upper class of society that could afford it.

I’m not saying we should all never eat meat as I know it’s just not practically going to happen. I do think we should reduce the consumption of meat and dairy because even if the thought of it being actual animals isn’t an issue, it’s still hard to face the conditions in which animals are kept in. Even if they claim to be free range. I think there’s a huge stigma around vegetarianism/veganism which I understand as it is often overbearing, on the other hand I think a lot of the stigma originates from denial and people wanting to stay ignorant from the truth.

I hope this post doesn’t offend anyone, I’m simply expressing my opinion. If you think about it, it’s very rare that humans – nowadays – have the hunting instinct. I don’t know anyone that sees a sheep or cow and wants to pounce on it to slaughter and eat it, when they do they tend to be classed as psychopaths. I’m sure that comes down to disassociating the two, but it’s still a reality.

See you next time pals x

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My CFS/ME bucket list

When I first thought of starting a blog, the last thing I wanted was for it to turn into a pity party, I don’t want to come across all ‘woe is me’. Don’t get me wrong it is absolutely grim that I suffer from this illness, I wouldn’t wish it on my worst enemy. However, every cloud has a silver lining and I like to think of myself as an optimistic person. Getting diagnosed was the start of getting closer to recovering (something I addressed in my last post), it’s impossible to not think of all the things I want to do when I get better or even if I do recover.

One of the things we learn about CFS/ME is the idea of a baseline, I’ve spoken about the cyclical nature of the illness and how it can come in waves and crashes. The technical term is ‘boom and bust’, you have booms of highs and busts of lows. The idea is that you are able to find a baseline – a middle point where you don’t get spikes of illness. That sounds like a dream to me right now, although it’s hard to imagine not having the boosts I can surely live without the busts. Over the past few months I’ve started to curate a bit of a list of things I’d like to do once I’ve recovered / whilst I’m recovering.

1. Get a pet – most likely a rabbit

I know my mum is properly reading this absolutely cringing, however anyone that knows me will know my love for animals. I completely adore my cat and I had a rabbit whilst I was in school that I loved with all my little heart. I think animals are so therapeutic, I’d love to have that with me whilst I’m living in Brighton. I honestly think it would be so good for me to have something I’m responsible for, something to motivate me to get up and do something when I’m struggling.

2. Go Ape

Now this is a very random thing, but I have wanted to do an outdoor activity day like Go Ape for months now. There’s no way I could do a whole day of such adrenaline filled activity if I did manage to I think I’d be very ill for days after. I used to be so active and I miss being able to have a busy day without worrying about how long it would take me to recover from. If I am able to find a baseline that works for me, I could possibly construct a day that I’m actually able to do without feeling dreadful.

3. Get fit again

It’s completely understandable why I’ve lost all my fitness over the past year or so since it feels as though all I’ve done is lay in bed for most of it, however I really miss exercising and going to the gym. I miss being able to jump on the treadmill and just run for 20 minutes like everybody else, on a good day I manage 7 minutes straight now. Part of this is down to how CFS/ME affects your body when you exercise, it has lots of repercussions like the inability to regulate your temperature. I’d love to get build a routine with exercise in that works for me and allows me to rest without feeling like I’ve taken 3 steps back.

4. Get a job

This may sound like a big one, but I only mean a part time job, for the past year I’ve watched all my friends work and it just feels so frustrating that I can’t work myself. I’m sure majority of people would happily not work, and I’m fortunate enough to be in a position that I’ve managed without working so far. However I’m nearly 22 and haven’t worked since I was 19 now and would love to gain some independence back, and start saving money up – especially with both my sisters getting married next year.

5. Go on a city break

Granted this is something I’m sure everybody would want to do, however I’d love to go to a city and be able to roam around all day exploring. I was so fortunate that for my 21st birthday my boyfriend took me to Milan, and don’t get my wrong we had an incredible time, although it was impossible to not feel like my illness held us back in doing as much as we would like to. I recently went to Cyprus and at least three days were spent in bed resting and sleeping whilst my family were out exploring the island. At night I would have to lie down on a sun bed whilst we all sat together after dinner. I would love to just enjoy a new country/city without missing out on things.

6. Start singing again

This is something I can realistically start at anytime, however it’s a case of actually making the effort to practice and relearn technique all over again. I’m counting on the fact that once Callum (the boyfriend) finishes his masters he can help me practice and learn again. A little backstory, Callum plays piano and is currently drowning in Debussy, but in a few days he shall be finished and I can rope him into playing for me. I really miss singing and I think it’s something I will always want to have as a hobby.

See you next time pals x

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The start of recovery

Unfortunately, I missed a blog post over the weekend as I was busy moving into a new flat and I am yet to get any wifi. However, it does mean that my post today is far more interesting, as I attended my first group session for self management of CFS/ME yesterday. Before I get into this post, I just want to state the obvious that I won’t be speaking about the other people in the group for confidentiality reasons. I just want to share some of the things I learnt and how I hope this group is going to help me.

I have been brave in calling this post ‘the start of recovery’ as although that is an obvious hope for me, it isn’t a realistic goal at this point. To avoid any confusion, people often recover from CFS/ME, but quite often they will have relapses and fall ill again. In an ideal world, I would recover from CFS/ME and never suffer a setback again, but that’s not a realistic approach. It is likely I will get better from this level of fatigue, but the cyclical nature of this illness means I will fall in and out of bad patches. Ultimately I want to be in a position where, if I am relapsing again, I will know exactly how to manage myself and not become bogged down by my illness.

I think the most helpful thing about the group is knowing other people going through the same thing. I’m lucky to have my sister to support me as well, but whilst I’m living down in Brighton it’s nice to build a support network around me. CFS/ME can sometimes feel so isolating, particularly when I’ve had to cancel plans; there’s been times when I’ve convinced myself I’m making it up as there are so many random symptoms. It’s funny how the odd ache or pain or even IBS can all relate back to CFS/ME. It is far more than just tiredness.

I learnt something new about the illness yesterday, it links to the HPA axis hence all the confusing symptoms. The HPA axis is the three main glands: hypothalamus, pituitary and adrenal glands. These regulate a lot of your bodily functions, so when suffering with CFS/ME so much of your body is affected. This little bit of information was like a lightbulb going off in my mind, like all of sudden everything started to make sense and I could understand why it feels like a million different problems.

The session also made me question why I suffered with CFS/ME, often people suffer from a virus or infection then develop CFS/ME, however I can’t pinpoint anything specific that triggered my illness. There are some predisposing factors, if you are a woman you are more likely to get it, and your genetics may play a role (which would make sense as one of my sisters also suffers). Stress and lifestyle could also influence your likeliness to get it, I just wrote a blog post all about my performing past and although it was thoroughly enjoyable, maybe all the stress of exams and studying coupled up with busyness has finally caught up with me and manifested itself as this illness. Maybe my body is just burnt out from those years of not letting myself take a break. I can’t give a reason as to why I suffer from CFS/ME, I don’t want to get caught up thinking about why, however I am grateful to fall ill whilst I have time to take off and just focus on myself.

See you next time pals x

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Let’s talk about performing arts

Now I feel there is more than enough content out there giving advice on performing arts and sharing experiences, however I often get asked why I decided to change course and not perform anymore.

For anyone that may not know, I’ve performed pretty much my whole life. I started dancing when I was 4 and took up musical theatre when I was 8, I didn’t stop performing until I started at BIMM. I didn’t consciously choose to completely stop, it simply didn’t fit in my timetable and I couldn’t afford classes down in Brighton. Before transferring to BIMM, I did a foundation year at Sussex university and wanted to do a drama degree, however during that year I soon realised that degree wasn’t for me and found myself searching for a new career path.

When I was growing up all I ever wanted to do was perform and I always had that goal set in mind. I worked so unbelievably hard to get that goal, I just loved to be on stage and to be in classes learning dances, songs or plays. It was what kept me so focused in school and determined to do well. There was never a time when I didn’t know exactly what I wanted to do when I grew up, I always felt I wanted more than what Lincoln could offer me. Whilst growing up, I would do a standard day at school but then everyday I would come home have 1/2 hours to practice whatever I needed to and eat before I had to be out the door again to attend a class. During my GSCEs my only day off was a Saturday and that was usually taken up by revision.

Before I start getting into why I changed my mind, I just want to make it clear that I still adore performing and have absolutely no regrets that I dedicated so much time and money (thanks Mum and Dad) to it as I would never be where I am without it. There will always be a huge part of me that wishes I still performed, I can’t listen to a song without imagining dancing to it, I can’t cook dinner without singing along to a film soundtrack (mainly Mamma Mia) and I can’t help but recite lines along to tv shows with as much conviction as possible. I’ve always said if I won the lottery I’d set up my own dance company and just spend my days choreographing piece after piece. However when I went to university and reality set in I had a change of heart.

Now deciding to completely deviate from everything I’d worked for growing up was not a decision I came to easily. I remember sitting on the beach with my friend Ash hysterically crying as I had no clue what I wanted to do with my life and felt as if everything was spiralling out of control. I’d never been in a position where I had no direction but suddenly I was and to this day I still am, every time someone asks me what I want to do with my life I list about 5 things before just admitting I have no idea. When I found out about BIMM and the events management course it felt so right as I loved going to gigs, I loved music and I was still going to be in the midst of the performing industries. I remember being so fearful to tell my family, although I knew they would be so supportive, I couldn’t help but feel like I was letting them down, we’d all worked so hard to put me in the best position to do what I want.

I think the main reason I decided to not go into performing was the pressure, I found myself constantly wanting to be better and I was obsessed with body image, I couldn’t just enjoy an achievement because there was always a way to improve. I guess it just brought out the perfectionist in me. In light of everything that’s happened over the past year I think it was fate I took a different path, I can’t imagine suffering with CFS/ME and being as busy or active as I was. I would never say never to going back and picking it up again as it really is a love of mine, and as much as I miss it there are so many elements I’m glad to be away from. It is so hard judging friendships when you’re also competing for parts and I found a lot of people I encountered in musical theatre to be so two faced, obviously not everybody was, it just seemed to be those people who got parts or marched their parents in to demand parts.

I would be so surprised if I ended up working in a different industry to the arts, I’ve been so lucky to revolve my life around them I can’t imagine anything different. If I were to go back into performing I think I’d want to mainly act, it was always something that came naturally to me and I regret not focussing on it when I was younger rather than spreading myself too thinly. Although I love dancing, I always got lumped as just a dancer which was so frustrating as I felt I was never given an opportunity to improve on singing in public, I never wanted to just be a dancer and didn’t have the choice anyway after injuring myself so much.

I have such a love affair for performing it will never vanish from my life completely, but I have little regrets deciding not to train straight from sixth form. Maybe in a few years I’ll decide to go to drama school, I have no idea what the future holds, but for now I need a break.

See you next time pals x

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The hardest part of CFS/ME

For me, the hardest part of CFS/ME is accepting just how ill I am. I think part of the problem is due to the process of diagnosing the illness, you can’t just take a blood test and diagnose it straight away. It’s a process of eliminating everything else it could be, hence why it takes so long to diagnose. In my case my diagnosis took a year to get, which isn’t horrifically long compared to others, but it wasn’t until about 8/9 months down the line did I actually start to accept what was wrong. Every visit to the doctors just led to another possible reason for being ill that could be simply fixed, I guess that kept my hopes up that it wasn’t a more serious problem.

I’m not going to lie, it is hard being 21 and knowing I will probably never work a full time job – if I do it will probably involve flexible hours and working from home. Granted, it’s not as if I’ve seen myself as a 9-5 office girl but it would be nice to still have the option. Although I will get better from being as ill as I am, it is still an illness I will have for the rest of my life, I will have to constantly work at a routine that minimises flare ups as much as possible. There are lots of things you have to accept that don’t even cross your mind when you are healthy, like allowing extra time to get places in case I need to rest.

There’s other times when I just have to accept I will let people down like when I can’t make plans or I’m unable to do things I used to be able to. If I have a night out planned I know that will mean the next two days are a write off or at least a struggle. Sometimes I get so frustrated knowing I can’t do something, it feels like I’m losing my independence, but I have to just accept that I will have to ask people to help me. No one likes to think they can’t do something, its against your instincts.

Obviously it’s important to accept the restrictions of CFS/ME or else you tire yourself out more, but there’s more to it than that. It’s very hard to not get caught up searching for miracle cures that just don’t exist, I had to accept that this was my life now and I simply have to manage it as best as I can.

Its taken a while but I’m finally getting to a place where I can accept that CFS/ME will be a part of my life but it doesn’t have to ruin my life.

See you next time pals x

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Invisible Illness

Before I knew about CFS/ME I was certainly ignorant to the concept of an invisible illness. I was often guilty of judging someone based on their physical ability, for example if I saw someone park in a disabled space who looked perfectly able, I would be confused and sometimes question their right to park there. Unless I was having a particularly bad day where I struggle to move quickly, it’s unlikely you would ever look at me and think I was ill.

That’s where the idea of an invisible illness begins for me, physically I look able and healthy, but internally I’m battling a number of symptoms. That mainly addresses what the term means to general people, but for the sufferer I believe it relates to all the symptoms that can slowly build up over time without you noticing. When I started suffering with CFS/ME I dismissed so many of my symptoms as other issues that could be fixed, I thought the tiredness was just a side effect of IBS or the flu like symptoms were just hayfever. I suppose a big part of this was denial as I didn’t want to accept that this was a bigger long term issue.

Now I have been ill for over a year I can notice my symptoms flaring up without even questioning them. Most nights I reach a point where I am so exhausted but I’m struggling to sleep, I will then get so restless and will struggle to find a comfortable position. Lucky for my boyfriend, I know. At first I thought this was just a habit but now I know that it’s a sign I haven’t rested enough during the day. The idea of having an invisible illness doesn’t just apply to the external or the observers, it lies with the sufferer as well. It is easy to forget that someone is ill when you can’t physically see it, there’s no sign that they are suffering. Sometimes I wish we were like sims and the diamond above my head could turn orange so people knew I wasn’t well that day, that way I wouldn’t have to constantly explain myself.

Realistically, I have never met someone who hasn’t been understanding when I explain I have CFS/ME. But of course this doesn’t prevent me from being anxious at the thought of having to explain to a complete stranger why I am sat in the priority seat and unable to stand for long periods of time. It is tiring having to constantly remind people I am ill, no one that knows me ever questions me on purpose, it is usually a passing comment or they’re worried something else is wrong. It may sound dramatic but sometimes it feels like all I am is my illness, especially when it takes all my energy just to get up and go to the bathroom. On the other hand, there are days when I can put on a smiley front and let myself feel as if everything is normal. Those days are the ones that keep me going with this illness, the reminder that this illness is a cycle and I will have days where I am better, even if they don’t last forever.

Nearly every time I have told someone I have CFS/ME they tell me they never would have known, now this is either a compliment to all my acting training or I really do appear okay a lot of the time. Hearing compliments like that is honestly so helpful when I’m feeling overwhelmed by my illness, it’s a reminder that there are people out there that have no idea I am chronically ill, to them I am exactly who I was before I fell ill.

This post turned out to be a lot longer than I planned, I had no idea I had this much to say on the topic. I hope it helped you see things from my side of an invisible illness, see you next time pals x