One of the hardest things about living with chronic illness(es) is that it’s exactly that: chronic. You know it’s never going to go away, and while you may have periods of time where you feel slightly better, eventually it gets worse again. There is no break, no pause button, let alone a cure. Sometimes those things that help can be exhausting and equally painful, such as surgeries and therapies. It consumes your entire life, and it can be difficult to learn how to not let it take over your life.
Everything Changes
Around ten years ago, my diagnoses started to roll in – although my symptoms had been coming and going for much longer. A brief summary of some of my conditions – and sadly, I will most likely forget a few – include:
- Fibromyalgia
- Bronchiectasis
- Chronic migraines
- Long QT Syndrome, SVT (Supraventricular Tachycardia), Incomplete RBBB (Right Bundle Branch Block)
- Functional GI Disorders and a stomach hiatus hernia
- Cervical spondylosis, protruding discs, scoliosis
- Hypermobility and a grade 2 ATFL (anterior tibiofibular ligament) sprain/tear
Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). His idea is that diagnosis wise, I have them, but it is my body and only I can determine how accurately these encompass my symptoms.
Someone like myself who has multiple diagnoses that require a lot of specific treatment and care is referred to as a person with ‘complex care/health needs’. This makes life a little harder, as my doctors don’t really communicate much with each other and I end up having to point out that I can’t have certain medications or do certain things because of other conditions. While I have gotten used to it, it can be difficult when I’m particularly struggling with one thing and am tempted to just go ‘oh well I’ll risk the heart attack and take these just to be in less pain’!
Dancing Through Life
When I was younger I loved performing. In fact, I still do – my dog frequently enjoys my performances of various songs from musicals I love when I have the house to myself. Up until I was sixteen I did a lot of dancing, and it dominated a lot of my time, which I loved. I like to be kept busy! I also did a lot of acting and singing and playing the piano. The ATFL sprain, which was initially thought to be a simple, minor sprain, put a stopper to that (along with the beginnings of regular palpitations and arrhythmia).
When I initially stopped dancing, I truly believed that in a couple of years time I’d get back to my normal self and start dancing again. I was also having a lot of regular back pain, which doctors always brushed off. Who doesn’t have back pain these days? When I was at drama school, the pain just wouldn’t go away and I always seemed to be unwell. Eventually, this ended with me in hospital for a week, using a Zimmer frame to slowly get around, and I quit drama school (I didn’t feel too bothered by this) and my job working on the London 2012 Olympics ceremonies.
In September 2013 I went to University. While there, although I continued to be in constant pain, had at least one million chest infections (alright, one million is a mild exaggeration), and a minor surgery, I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle, respectively. I’m really happy that I managed to do them, because I absolutely love musicals and they made me so happy! I also did a lot of yoga at university, and I’m so glad I did that while my body was still capable.
The Winner Takes It All
After leaving university I lost a lot of who I was, but I forced myself to keep being that person. I worked full time at a restaurant for a year, where I had been part-timing for two years while I studied. I went on tour for three months. I worked for a catering agency for a few months, taking every shift possible without regard to the fact that all humans need a day off sometimes. I forced myself into shoes that hurt my feet, to carry plates with hands that had lost all sensation and pick up crates of drinks with searing sciatica. I toured guests through famous sets with a grin on my face, spewing knowledge through the brain fog.
That year taught me so much, and although I did have a lot of fun and have so many fond memories – I wouldn’t put myself through it ever again. My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health. Perhaps I was in denial about how bad my health really was, hiding it under the smiles and appearance of an able body? I could carry the heavy things and walk all those stairs and work fifteen hour shifts – by sheer force.
Who benefited from all of that? Certainly not me. Sure, I earned decent money and got to go on great holidays and buy nice things. But ultimately, that didn’t help me. Having money didn’t make me less ill. It helped with purchasing things that I need, but I barely had the time to use them since I was always at work. Bubble baths were my savior. I somehow managed to go on dates, meeting for lunch or dinner before I had to go to work, applying eyeliner to distract from my tired eyes. Obviously, that fizzled out after a few months. I no longer had the energy to go for lunch or meet up or do anything except get home and sleep until I had to work again. People were always telling me ‘I’m sure you’ll feel a bit better when you’ve got some rest’ – but I neither believed them nor had the time to rest. I knew my body didn’t have a ‘get well’ mode anymore, so I didn’t stop.
Until I went to my parents for the Christmas holidays and actually had consecutive days off. I was exhausted. I knew then that something had to change. I could not continue forcing my body into these extremes, and wasting time that should be spent with family and friends desperately trying to recover from the pain by myself. I suddenly realised I was losing far, far more than I was attempting to gain.
Me and the Sky
In January 2018, I started to work at a special needs college through an agency, having wanted to do something different. I had worked with children and young adults with disabilities for around four years by then, so I was really happy to be in this setting. Although I had spent my entire life vowing never to teach, I quickly started to enjoy doing this job. I have worked in three different classes, and have been the teacher for all three at this stage – something I never thought I’d do! While the job is definitely stressful and exhausting, getting to push the boundaries of what society limits young people with learning difficulties and disabilities into is incredible.
Teaching and supporting young adults who have had barriers constantly put in place opened my eyes up about my own way of living with chronic health conditions and disabilities. When I take these students to their work placements, or see them achieve something they couldn’t do a year ago, I realise I need to have that level of advocacy and encouragement for myself. If I am telling people to use their mobility aids, or finding adaptive equipment so they can make themselves a drink or a sandwich, why have I been ignoring the fact that I ought to be doing this too? I have this knowledge and ability to teach people how to do useful life things, yet I am not doing these same things for myself.
It’s strange being able to work but not being able to do things like wash my own hair on a regular basis. I suppose I put all my energy into doing my job, and every so often I’ve got the energy to make myself dinner after work – although more often than not, I end up putting something in the oven while I shower. Usually with chips as a side, or pasta on a better day. But mostly, I am grateful for the change to, for a few hours a day, box up my own problems and focus on doing my job – because the job certainly requires a lot of my attention. Of course, I need breaks and I need the occasional time out for a migraine, or I wear slippers all day because my feet are too sore for shoes. I am aware that one day, maybe sooner than I’d like, I will not be able to do this job. This is only something I have recently accepted, and am working on being okay with. For all I know, that could be this year – or it could be twenty years from now.
Being able to work with complex care needs is (aside from a blessing and an extra load of stress) almost like being able to ‘do it all’ – and yet it’s far from it. If my colleagues are exhausted, stressed and in pain, what does that make me? Yet I’m fortunate to have good support at work – aside from having on site nurses for the students and a safe place for my medication, we have an Occupational Health nurse who helps with risk assessments and work adjustments/advice to management so that I can do my job safely and effectively. Without this, it’s unlikely I’d be doing this job.
Mama, I’m A Big Girl Now
We can all agree that twenty six is definitely an adult age – although I, along with most of my friends, still nervously laugh at the idea of being an adult. Responsibilities? Doing things? Earning money? Saving money? What on earth was wrong with just going to school for a few hours a day with your friends and then doing the fun things with some pocket money you maybe had to wash the dishes to earn? Either way, it’s an adult age, whether I like it or not.
I spend a lot of time at my parents’ house – despite the rent I pay for my own apartment (although at the time of writing I don’t have my own place thanks to a horrible experience with awful property management and a collapsed ceiling). Sometimes this is by choice because I do like to see my parents and my dog. Especially my dog! Her name is Holly and she is the most loving staffie you will ever meet. Anyway, I spend a lot of time at my parents’ house, but not necessarily by choice.
Going to my parents’ house, while a long drive from work, means there is dinner for me at the end of the day where I’d be too tired to make it myself. It means somebody can wash my hair, and pick up prescriptions when I’m too exhausted to do it myself. I spent about two months recently commuting after leaving my apartment, and it was both exhausting and a blessing. I would not do it again though.
Like most mothers, mine is very protective, especially what with me being so unwell. Every so often she tries to sway me to just stay here where I can be looked after, and I think this is something many with chronic illnesses face. I know some people do move back to their parents because they cannot handle living alone with the state of their health – and have the same push of benefits and drawbacks. Nobody really wants to still be living with their parents in their twenties, no matter how much you love them. Despite being unwell, we do have our own lives and like to do things our way. My agreement is that I’ll get help, such as hiring a cleaner and see if I can get somebody to assist me with things like washing my hair, and do online grocery shopping rather than drag myself around a store. I hate that I can’t do these things for myself, but it’s important to accept that in order to live independently I will need support with some aspects – and that’s okay.
Who Lives, Who Dies, Who Tells Your Story
I am so incredibly fortunate for my support system. From that perspective, I really lucked out. My family, friends and colleagues are understanding, supportive and excellent advocates. Whether it’s making me a cup of tea or taking me to a hospital appointment, or accepting that meeting up will involve me lying on the floor with a hot water bottle, they have never once complained or questioned things. Even at Christmas, when my family all flew in and I spent most of my time in bed because I was so unwell and couldn’t do anything on Christmas Day.
My little circle of close friends have known me for twelve years now, so they’ve really been on the whole journey with me. I still do things I love when I can, and having a wheelchair has definitely helped with that recently. It meant I could go to the beach with them, where they wanted to walk around the lanes and I knew I’d struggle. It also means when I have a low energy day, I don’t waste it on forcing myself to walk around somewhere and then paying for it big time later. It’s life-changing. But they also know I’m stubborn and will climb cliffs with them even if I have to crawl down them later, just so I’ve done what I love doing.
I only recently became more open about my health with everyone – probably only the last two years did I start to talk about it properly. Interestingly, people always end up coming to me and saying that their friend or colleague has something similar and give me a suggestion (certain massages or things like CBD oil) or say they were able to advise someone else with something I had told them. My mom even discusses me with her patients! Even though I don’t know these people personally, it gives me a further sense of extended community support. I’m not alone in this.
‘Get well soon’ may be an impossibility, and that’s not the easiest concept – no matter how often we say that it’s fine. Part of me will always miss the ‘old me’ who could do everything that I no longer can – but I also love the ‘new me’ who perseveres through every single day and discovers more things that I am capable of. Turns out, I love to crochet (except when it dislocates my fingers) and I still love to sing and play the piano when I can. I love that I have friends who enjoy meeting up for a cup of tea, or drive over an hour to my apartment for takeaway and movie night. My best friend came all the way down from Manchester and all we did was sit on my parents sofa watching many episodes of Friends and a meal out. You guys are the best friends this broken little blonde could ask for.
The online chronic illness community is also incredible – I recently posted a story about my ovarian cysts, which I knew little about as the doctor didn’t explain them, and suddenly everything was so much clearer. I felt less alone, less like I was in my own corner of impossible pain. I love being part of the Unchargeables team, sharing my journey on Instagram and getting to talk to fellow warriors every day!
Being unwell has almost consumed my life, but I will continue to resist it taking over every aspect of it. Whether it’s the occasional beach walk, dislocated fingers from making pies, or doing my job with an ice pack tied to my head – Vai is still here. Sure, I’m not getting any better – and I will have days where I feel ready to give up. I have days where all I can do is lie in bed doing nothing because I’ve lost all motivation. But the time comes around where I draw on my eyebrows, put on my big hoop earrings, and continue to fight. Sharing my story has helped me come to terms with many things and a sounding ground for new and old problems.
About The Author
Vai is
From the time my sister was 11 years old, she has had several different types of headaches. But this condition has turned her entire life upside down. While there has been some success with medications and oxygen therapy, it turned out not as successful for her. From the time she was little, she has been immune to pain medications; even simple antibiotics take longer to work on her. For the last several years since her diagnosis, Steph has really struggled to get answers. And of course, because cluster headaches are an invisible illness, it is harder for her to be taken seriously about how much pain she truly is in.
I also feel that the word “headache” should be removed indefinitely from the description of the condition. It may seem insignificant to do so. But I believe if we do that, it could get a wider spotlight put upon cluster headaches, thus, bringing it to the attention of the medical field and the general public. This could then lead to the start of a very long-awaited conversation on this neurological disease that has affected far too many people.
Blogger, disability activist, writer, poet, and podcast host.
By Kimberlee MacLean
