I’m Scared – Are You?

This is quite a hard post to write. I’m used to being loud and outspoken and angry and sarcastic, or sad, or positive and encouraging.

I’m not really used to writing out how scared I am, in blog format.

I’m terrified.

People around the world are dying in large numbers from this virus. It’s a full pandemic. And the callous attitude of many is really getting to me.

“It’s fine,” they say, relieved, “because only old people, only disabled people, only immunocompromised people are going to die. Everyone else will be fine!”

Thus they blithely wave a large section of the population into irrelevance. They don’t care. They don’t think we really exist. They don’t think we deserve to be alive. They don’t mind that we will die in huge numbers, because we’re ONLY disabled people. They’ll be fine, with their healthy bodies, their youth untouched by years or chronic illness, their immune systems neither unresponsive nor overactive – they’ll shake it off like a bad cold and survive while we die a horrible, painful death of suffocation and pneumonia.

The selfishness of such people is immense. They have descended upon the shops like a Mosaic plague of locusts, snatching necessary supplies out of our hands and hoarding them in ridiculous quantities they will never need or use. My friends desperately need disinfecting wipes to properly clean their mobility aids, yet all remaining stock of such items has been decimated by the viciously selfish and gullibly panicked. Medical supplies actually needed by doctors and chronically ill people have been stolen away by those with more money than compassion. I am sickened, horrified, infuriated to the point of tears by the sheer stubborn refusal of people to accommodate the needs of others even a little bit.

I always knew, somewhere in my mind, that the majority of abled people do not care about us, but this situation has made it so painfully obvious that I feel as though I’ve been kicked in the chest. My friends could very well suffer and die because these people can see only their own fear and have no thought for anyone else.

It’s a truly terrifying time to be a chronically ill/disabled person. I don’t want to die. I don’t want my friends to die.

We have to learn to look after each other, to stop putting human beings in a hierarchy of “who deserves to exist more”. We all deserve to exist! We deserve to thrive! We deserve to lead happy, fulfilling lives in whatever way is available to us. We are a communal species – it’s time we started goddamn acting like it.

The Stubborn Taurus Guide to Accepting Help

I’m a pretty stereotypical Taurus. I like comfort and safety, I love scented candles and fluffy blankets and velvet clothing, and I’m as stubborn as the bull that represents my sign. I’ve always been ferociously independent by nature, and I’ve always known exactly what I wanted, right from when I was a tiny two-year-old trying on shoes. My anxiety and the emotional abuse I’m still healing from have mellowed my decisiveness too far the other way to the point where I’ve been self-effacing for years and struggle to make decisions that involve or impact other people in even minor ways (hello, yes, I will spend two hours Not Deciding what to have for dinner in case the other person will be unhappy with my choice), but if it’s a decision that impacts only myself, I am extremely single-minded and usually get what I want through sheer determination and strength of purpose.

Unfortunately, life has conspired to make it very difficult for me to maintain the level of independence I would prefer. Strength of will helps when you’re chronically ill, but it can’t heal you or make you magically able to do things when your body just point-blank refuses to cooperate. In fact, it can even end up doing more harm than good.

I’m known among my friends and family for being incredibly avoidant when it comes to asking for, and accepting, help. The first winter after I left home, I was dirt poor. I was living on a truly abysmal diet of bran flakes (Tesco, 69p per box), milk (Tesco, 80p per 2 pint carton), and tinned rice pudding (Asda’s own non-branded version, 37p per tin), with the occasional apple or carrot for some actual nutrition. I was walking at least 3 miles per day between my house and the bus stop to get to university, often in rain and wind because England. My shoes got holes in the bottoms. I kept getting sick. It was horrible. But such is my horror of becoming a burden that my then-boyfriend had to practically fire up the thumbscrews to get the truth about my situation and convince me to accept monetary help from him.

Fast-forward 3 years: having moved across the world and completely burned myself out at university in the USA, my chronic illnesses have grown exponentially worse and are significantly impacting my life and ability to do … well, everything. I am finally having to admit to myself that there are many things I just can’t do anymore, and even more things I can’t do without help of some description.

I recently “caved” (see how I’m still framing this as some kind of concession or failure? It’s not a failure. Don’t be me) and bought a cane because I was finding it extremely painful and difficult to get up and down the two flights of stairs to our apartment, as well as struggling to walk and stand for anything longer than about 20 minutes. I wish I’d bought it months ago. It’s absolutely magic. Also it’s really cute because it has a metallic red rose pattern on it and I love it! (see picture 1)

Even more recently I finally allowed myself to use a motorised shopping scooter with a basket attached, in order to avoid being in huge pain at Walmart. (see picture 2) Again, I wish I had let myself do this before now. I held out, believing I could essentially grit my teeth and blag my way through the pain and danger of subluxation, but I should have just let myself accept the help.

I want other people not to make the same mistake I’ve been making all this time.

This is my Stubborn Taurus Guide to Accepting Help:

 

• Make sure you’re fighting the right things 

Fighting is important for some things, but if you end up fighting your own body all the time, fighting your limitations instead of learning to accept and work around them, you’ll damage yourself both physically and emotionally. Pick. Your. Battles. This also goes for not fighting the people trying to help you. Don’t push away your support network because you’re too stubborn and scared to let them be your safety net. They love you. Honest.

• Try not to see accepting help as a failure or a weakness

You’re human, the same as everyone else. John Donne said “No man is an island entire of itself” and it’s true. Giving and accepting help is part of being a community-based species: it’s what we do. There should be no shame or stigma attached to needing help.

• Your new mantra is “I am not a burden. I deserve to exist in as much comfort as possible.”

When you’ve learned that independence is the only way you can survive and maintain your self, the idea of being a burden if you ask for help is very hard to overcome. But the truth is that you are not a burden. Life is meant to be lived. You don’t deserve to be in unnecessary pain or privation. You deserve to have nice things, and you have intrinsic value as a living human.

• Find practical ways to make positivity easier 

This is a tricky one. I am definitely not an advocate for toxic positivity culture, where everything has to be sunshine and flowers 24/7 or you’re somehow a terrible person. Chronic illness sucks, frankly, and it’s not helpful to refuse to acknowledge that. HOWEVER, you can do little things to help make it easier to accept help – like finding a cane with an aesthetically pleasing pattern, for example. Chronic illness does suck, but it doesn’t have to be all doom and gloom.

• Learn how to tell judgmental people to f*ck off

This one should come fairly easily to the Stubborn Taurus – but in the struggle to learn how to accept help, it’s important not to lose sight of the fact that a) not everyone means well, and b) even well-meaning advice isn’t always good or useful. Sometimes you have to conserve your energy and tell people to f*ck off (either literally or metaphorically. If online, judicious use of the block button is advised. Real-life interactions can be more complicated.)

 

As always, this is a work in progress for me as it will be for you. I am still learning how to apply my own advice, and some days it’s harder than others. But it’s worth the effort.

If you have any other points to add to the Guide, let me know in the comments!

 

Picture 1 – My fantastic cane! 

Picture 2 – The scooter is a Good Friend. 

 

What Is a Writer? and other impostor-syndrome stories related to chronic illness

CW: Medical issues, reproductive health, blood mention

So, Where Have I Been?

You may have noticed that it’s been quite a while since I last posted here: nearly a whole year, in fact. Shortly after writing about the history of chronic pain treatment, I was struck down by a massive flare-up of my own chronic illnesses for around 10 months. I’m sure there’s a joke in there somewhere, but I’m too tired and annoyed to bother finding it.

I was fighting almost constant anaphylactoid reactions from April through to October, and just as the pollen season died down and took my furious mast cells with it, my PCOS flared with a vengeance. I bled heavily from the end of October to the beginning of January with almost no letup whatsoever. I was genuinely afraid for my life. The pain, weakness, lightheadedness, and brain fog were among the worst I’ve ever experienced.

I am finally getting myself sorted out with use of the progesterone only pill, but that’s coming with its own set of problems – it is exacerbating my connective tissue disorder and causing me a lot of pain and trouble with walking and subluxations. When you have multiple co-occurring chronic illnesses you sometimes have to choose the lesser of two evils, and for me the increase in pain and subluxations was worth it to not, you know, die from anaemia.

[For further information about my “constellation” of disorders (some diagnosed, some as yet unconfirmed by doctors), definitely check out the wonderful Oh TWIST! ]

Impostor! Impostor!

One of the more annoying results of all this health mess is that I have barely been able to write anything for a year. Extreme exhaustion, pain, and brain fog are not conducive to any kind of writing. But if I’m brutally honest with myself, the biggest hurdle in getting back on my feet as far as writing is concerned has been my own doubt.

I always thought writing was in my blood, but when your blood is disappearing from your body at an alarming rate and just thinking about what you want for dinner feels like trying to do an Olympic sprint through a treacle bog, you start to question everything. Even when the worst of the flare-up had died down, I didn’t feel like I could call myself a writer anymore. I hadn’t written anything in months! My Twitter friends and followers were extremely kind and helpful when I sobbed all over the Internet about my loss of creativity, but despite their positive, comforting words I still felt like a fraud. Some writers talk about inspiration not mattering as much as dedication and work, but what about when you don’t have the capacity for either? I was convinced I had lost my touch entirely and would never be able to write again.

Some of my friends pointed out that Twitter threads surely count as “writing” (and of course they were right), but my brain wouldn’t allow that because I hadn’t touched any of my various WIPs or my blog in months. My fanfic readers probably think I’ve gone back to my home planet or something.

Of course the actual pain and sickness and fear were the worst part of being severely ill for most of a year – of course they were – but at the same time one of the most difficult things was the constant feeling of slowly losing parts of myself. I could feel my energy, my creativity, my desire to do things just … trickling away, as if my brain and body had become an unplugged sink through which my whole self was draining into oblivion. When you lose the things you love about yourself, who are you?

 

Miles to Go

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

– Robert Frost, Stopping By Woods on a Snowy Evening

The road to recovery is a lot like trudging up a snowy hill. Sometimes you’re making good progress and then there’s a hidden patch of ice and suddenly you’re not as far along as you thought you were. This is especially true of chronic illnesses, because even if the bad flare-up has died down, you’re still not well, and “getting back on your feet” can look a lot different to when an abled person has been ill and is recovering.

It can be very tempting, as Frost writes, to just stay where you are, lulled by the silence into a kind of trance. The uphill climb is so difficult and the snow is so pretty and there aren’t any people to bother you. The darkness is alluring. But the problem with staying still is that you freeze to death eventually. Stagnation means a slow death, creeping infinitesimally toward the dark even without you realizing it.

You can’t know until you try. With the caveat that I’m not recovered but still recovering, I have to speak from my own experience and say that you just have to give your creativity a chance to come back. Don’t force it, but don’t deny the tiny flashes you have. Let them come naturally, organically, and listen to their small, bright voices. The snowy hill may always be there, and you may have to reconcile yourself to never actually reaching the top, but you can admire and enjoy the individual snowflakes as they fall, without stopping too long and freezing your feet to the ground.

It’s a struggle, but then isn’t that life and art all over?

 

 

[Image credit: SamuelFrancisJohnson on Pixabay]