I get out of bed and my head is fuzzy, I’m most definitely not awake. My dog, Clifford is sound asleep on the bed next to me. I turn around and reach for the bedside draw, I take my daily medication for my thyroid. I stand up, my feet hurt, all through the muscles and in the joints, I walk towards the kitchen to get a morning cup of tea. It’s about 9am, I’ve had about 10 hours ‘sleep’. I never sleep well, and I wake up every day feeling like I need to go back to sleep again. I have a strict routine of going to bed around 10pm every night (or most nights) and I wake up around 9am.
Going to bed is tricky, I have a hernia in my stomach, this means that I must make sure all my dinner is digested before I go to sleep, otherwise it comes up through the hernia and I vomit it up. In fact, the idea works with every time I eat. I can’t lay down, or even bend repeatedly otherwise the food comes up. I’ve had the problem even from cleaning, hanging out washing and burlesque or dance practise (bending over etc). My bed is also elevated at one end. This means I also must eat dinner by a certain time, to get to bed on time. I also must make sure I take my evening meds for anxiety at around the time I eat dinner. The meds hit me a couple of hours later and helps me get to sleep. Sleep, wouldn’t that be good? I have sleep apnoea and spent a couple of years at the dentist working through this. I wear an ‘appliance’ when I go to bed, it’s like a mouth guard, it holds my jaw in place and helps me to breathe when I sleep. It also helps with the incredible jaw clenching that I do every night. I usually wake up a minimum of 5 times a night and am restless through-out. Getting to bed on time is a feat within itself sometimes.
Why would I share all this? Because sharing is caring. No, because sharing is educating. It’s also information that I hope brings greater understanding to who I am, and it helps people who like me and care about me, to understand my behaviour. I can hear particular ‘friends’ saying I am whining, well, fuck you. That’s all I have to say. Life is hard and tricky, and I don’t necessarily have many people to talk to, despite being surrounded (or seemingly surrounded, at times).
At Christmas time 2017 I had a couple of seemingly minor things happen that were extra hard for me emotionally. They sent me into a kind of meltdown. Christmas is not fun and easy. I know that this is the case for many people, I am not special here. In my family I have become the main adult, the supreme adult. The central person that will organise any kind of family event, for my small but now complicated family. It never used to be complicated, but age, various illnesses and individual quirks have developed over time. That’s a lot of pressure. It never feels like it’s about me as such, it’s always about bringing people together and providing an opportunity for relationships to continue to grow. For the people I care about to get together. In recent years my parents are ‘hard’. I must manage my parents. Not something that anyone who hasn’t had to do, can understand. It’s not something anyone else looking in can see, because it’s about the intricacies of relationships that have existed forever. I have never had children, so I don’t understand first hand parenthood, however, I don’t think anyone really knows what it is like to become a parent to their own parents until you do. There’s also relationships with siblings and partners to consider at any family gathering.
So, I had this melt down. Anxiety overcame me, and I was a mess. I couldn’t really express this to anyone. I tried to tell my partners, but I don’t know if they understood. I seemed to be a mess over ‘nothing’. I ended up at my GP in early January and I asked her ‘okay, so I do all these things to keep myself balanced, but even when I am good I am not, I’m always so exhausted and it’s been going on for years’. She said, ‘You have chronic fatigue, there is nothing left to check, everything seems fine, great in fact’. We talked a bit about how to balance the energy, she explained that in her experience people with chronic fatigue are often high achievers, who like things to be a certain way. I have never considered myself a high achiever. In fact, it feels like everything I have tried to do I have failed at (in my version of what success is, this is something I know logically to not be true). Other people tell me I am a high achiever. I dunno.
Hearing these words from the doctor was a relief. The last few years had become harder and harder. I felt like I was crawling through life. Everything felt so damn hard and I wondered if I was ‘normal’ or not. I approach my 50th birthday, which is in a couple of weeks. I had spoken to a few friends over time who were close to my age and everyone seemed to have a plethora of issues which made life hard, many of them physical issues. One friend managed to turn her health around and discover things about herself and now she is better than ever. This doesn’t or hasn’t seemed to be the case for me and/or a couple of others I know.
So, the doctor telling me I had chronic fatigue felt like permission to roll over. To stop trying at everything so damn hard. Since then (a couple of months) I have hardly been able to move. I have had body aches and pains that hurt so much, for days on end. My feet and ankles hurt every time I stand up. I’ve basically had flu like symptoms, and a really, foggy head. I have an appointment and I will be going back to my GP to talk about this further. Basically though, from what I have read and what others tell me, it’s about managing energy as this condition is not curable. A lot of people these days know of The Spoon Theory written by Christine Miserandino. This idea came from living with little energy or ‘spoons’ and is something many people get the gist of now. Christine Miserandino was/is living with Lupus which is an autoimmune disease. The idea of the spoon theory has been applied to many chronic illnesses and rightly so, although autoimmune diseases (in my experience so far), really are their own kettle of fish.
Absolutely EVERYTHING uses energy, in my experience – Walking even only metres, uses energy; Carrying anything uses energy, one tin of veggies weighing a few hundred grams can feel like an enormous weight; Loud sounds use energy, in fact sound begins to hurt and make the whole body go into aches and pains. A noisy restaurant on a couple of occasions recently, hurt me physically. Pushing a shopping trolley uses energy; Driving a car uses energy. Also, energy is not only physical; Making phone calls or interacting with anyone uses energy; Reading uses energy; Trying to navigate through instructions or learn something, uses energy. I have suffered a severe brain fog at times and not been able to do anything that requires ‘thinking’, read a few sentences and instant foggy head and headache.
I know at this stage I am very lucky. I am not bedbound, many people with chronic fatigue are bed bound, and many get to a point where they can’t walk. I acknowledge people who live with this and can only say it’s damn cruel and I am sorry you must deal with this.
Have I mentioned that chronic fatigue also carries a huge amount of stigma? Hurrah! (not). Often, it’s a diagnosis that happens when all other underlying reasons for symptoms have been investigated. Many people don’t believe it’s real. It’s a ‘it’s in your head’ or there is a reason for it which hasn’t been worked out by doctors because they are too ‘inept’ or lazy. Now, this could be true, in some cases, but that doesn’t mean that the person with it, hasn’t tried.
In the past 6-7 years I have consulted many medical practitioners and had many tests; I have been to a gynaecologist a few times; Been through menopause; Had umpteenth blood tests; An internal ultrasound; Ultra sound on bladder and kidneys; Been to an ear nose and throat specialist; Worked with a holistic dentist over 2.5 years; Been to a dietitian; An immunologist; A Counsellor; A psychologist; Had a gastroscopy; Had a couple of gynaecological procedures; Had two sleep studies done and had allergy tests … and I that’s not everything. I have seen a medical professional of some sort about every six weeks for the past 6 years. To get my medication right for my mental health took a lot of time, as did getting my thyroid meds right.
Apart from my low acting thyroid and my hernia I have a very restricted diet due to food intolerances; I manage anxiety and depression (and take meds for both) and I use progesterone cream to manage hormones. I use a nasal spray a couple of times a day, every day for the constant sinus infections and viruses I keep getting. It all takes a strict regime which it is easy to throw the balance of out. Half an hour late with my nightly meds or dinner effects everything.
All of this and I am still exhausted.
Now I am trying to understand how my body works and how much I can do. I find that I need to be in bed about 10 hours a night. I get up and wake up slowly, it takes a couple of hours before I feel I can ‘think straight’ and sometimes that doesn’t happen. Walking fast makes my legs turn to jelly and too much walking ends up in pain. After waking up for a couple of hours I might ‘do something’ that something could be anything from a bit of light housework…. I try to do one thing a day. Grocery shopping is hard and is the only thing I can do that day. This is because of the combination of it being physically hard, the noise in the shopping centre, driving there and thinking about what I need to buy and negotiating/working out money. I do these things, then I have lunch. Then I sit down again and rest. I intend to get into podcasts, but now, it’s Netflix and crochet.
I am talking lot in this blog about being unwell and how this affects you. The other big thing on top of this is the constant micro aggressions because of my various layers of ‘difference’. Non-binary, polyamorous, pansexual, queer…. the micro aggressions occur daily, and this is like having a new bruise inflicted every time this occurs
Last year was a difficult year. Among other things, I lost my job due to a restructure at work and we had the plebiscite about same sex marriage, here in Australia. After losing my job I muddled through a few ideas but basically couldn’t manage anything, the types of jobs I am qualified for, are not advertised and going out and looking for them felt like climbing Mount Everest. So, I am currently not working, and I don’t think I can. Fortunately, the partner I live with, can support me financially – almost (with some help from my other partner) – it’s going to be tough to pay the bills, but I am hoping that over the months I get some balance and work out income. A lot of people in my position end up having to live away from their partner, so they can claim financial support (from the government).
So why do I suck as a friend?
Well, the thing is, this fatigue has basically been around for many years. In the past years I have been in a couple of jobs that have taken a lot of energy, and I have also put energy into my art – which is my world. Without any art I would dry up and die, okay that’s melodramatic, but I would not do well. It’s important to who I am as well as my mental health. My art has had a focus on burlesque performance and drag. Looking at social media it looks like I have been busy doing lots of performance and around lots of people. I have done a fair amount of performance, and it is true to say that it helped my mental health immensely especially a few years ago. My health got in the way of me doing as well as I would like with my performance. I was never able to attend classes outside of ‘daytime’ hours and I couldn’t go to shows to participate in and be part of the community, because I never had the energy. I felt like I was really pushing it to do what I did.
Each show took a lot of energy, to just get there, to the point of performing and then performing itself. My days, weeks, months consisted of going to work, coming home, collapsing. Trying to get in a bit of performance practise, which became harder and harder, then doing a show.
Over the last few years I have connected with or tried to connect with a few people and this has been genuine from my perspective, however the pattern is the same. I have felt a connection, reached out to the person/s who have agreed, yes, we should catch up…and then I never do. This is because I simply have been struggling to ‘get over the line’ with work, with the few shows I have done, with life in general. I have and still feel a lot of guilt about these opportunities that feel like they’ve gone. Also, there is the longer-term friends who I have barely managed to see. I feel quite sad and disconnected from real connection. It has never been that I am ‘too busy’ for the person, it’s always been ‘I am too busy for life’ for anything. The last few years have been like walking in knee deep sand, I can’t seem to get anywhere, and everything is so hard. At Christmas I fell into the mud.
Now I can only walk a few hundred metres a day, I must have everything as quiet as possible around me, I can barely read anything and learning anything new is hard. If I walk too far I get pain through my body, if I am in a noisy environment I get pain through my body, if I try anything too mentally challenging I get pain through my body.
I am finding these changes very hard. My art, my burlesque and performance were things, that for me, defined me. Now I can’t participate, in any way. It was always hard, and I never achieved what I wanted to achieve, now I very much doubt I ever will. It’s hard looking at social media and seeing everyone else’s successes. Seeing the social connectedness between participants. I was also quite central many years ago in the LGBTIQ communities. I don’t feel connected there either. There is much to be said for being around ‘your own people’ as a validating experience that removes isolation. When you can’t have that parts of your being disintegrate. It was very hard last year when Australia got the same sex marriage vote and hundreds of my queer friends took to the streets, hundreds of non-queer allies took the streets, and I was watching through social media, feeling very lonely on my own, because I didn’t have the capacity to join them.
In my experience, with communities you must participate to be ‘remembered’ or to have your existence acknowledged. I had been very active in the queer community and pulled back for a few reasons (see my ‘me too’ blog). People barely noticed I was ‘gone’, I only had a couple of people ask after me, send me messages to check on my mental health. To these people I am forever grateful.
I expect the same thing will happen with the burlesque community. I haven’t been able to attend lots of things anyway, and it will be in a few years’ time, when people might stop and think ‘what ever happened to Sparklemuffin?’. At first, I was invited to lots of things through the Burly community in the last couple of years people stopped inviting me, probably because I never went. I couldn’t I was sick.
Things are hard now because I must totally redefine myself – or I feel I must. I have to find ways of existing that don’t sap my energy. Being a hermit will be the new black. Initially I had wanted to do the first few months of this year with all guns blazing. I turn 50 on the 15th of March and I wanted to do a few things that were a ‘fuck you’ to being 50, as well as a celebration of ‘how the hell did I get here and omg, I am still alive’. But, all of that has been pretty much scaled back to very minimal events. The things I was going to do for myself for my birthday involved participating in ‘bucket list’ events. I see many performers I have been around for a while, about to compete in or perform in competitions and events I would have strived to be part of and now I can’t. It’s also the annual Sydney queer Mardi Gras, another community that is mine and central to me, that I can’t really participate in as I had wanted. I wanted to get a new large tattoo, I can’t afford that. Everything is scaled back, and many people will only know it’s my birthday because social media will remind them.
Being sick sucks, it effects so many things. It’s hard when you don’t know you are sick. I’ve basically gradually closed the world off in a bid for self-preservation. This includes people. The pain is real, the desire for connection verses the need to ‘look after myself’ which is quiet time, mostly alone. It’s something many people ‘out there’ experience and it’s something that well, able bodied, able minded people don’t understand.
Enough doom and gloom. I am ‘only’ turning 50. I can’t physically do much, but there is and will be plenty more that I do, do. I need to learn the platform in which to do this. My ex husband thinks I should write a book, and indeed I do like writing (even if my grammar now sucks – a part of my health issues effecting my thinking). My aim to help myself financially is to start my own business, a small educational based business. I also want to do lots of crocheting, whilst I get that much needed rest. My grandmother is 93 and alive, so I would say I have lots more to do and I’m only halfway there.
Some advice for younger friends. Stop and appreciate your achievements – I’ve done some cool things, but just didn’t realise it at the time. Just dive in and do ‘stuff’, there will never be perfect conditions or ‘the right time’. Follow your heart, don’t spend a lot of time doing stuff you don’t like, including jobs and relationships. Everyone has something they like doing, it might be as strong as a passion or maybe not – find it and do it. Try lots of things if you need to, don’t worry about failure. If people don’t even try something, that’s a failure, not an attempt at doing something new that doesn’t go as expected. Get a handle on social media, use it for your own purposes and realise that it’s only a small window into someone else’s life, don’t go all FOMO (yep, have to listen to self on this one). Life never or rarely turns out as expected. Plans are great, and good to have, goals to work towards, but if life throws you a whammy, go with it. Don’t get upset about life not being as you expected. When I was in my early 20s I thought I would either be an old cat lady living by myself in my old age just making lots of art, or the other thing was I thought I would be married (to a man) possibly with kids.
I came out as same sex attracted at 36. At that time, I was married (to a man) and we wanted our own home and possibly to adopt or foster children. What has happened is I came out, met a woman, met another woman. Became a queer rights activist and advocate, also became an advocate for other people and human rights. Continued making art. Became a kick arse educator. Am Canberra’s longest standing Drag king and now Drag King Daddy. I took my clothes off onstage…… I do have fur children…….and all of that is only the beginning.
Oh…also, get your superannuation sorted. Even $5 a week. I have no money going into old age and I am still working towards that house – it had nothing to do with avocadoes.