A few years ago, I had had enough of disability to last me a lifetime. I have Ehlers Danlos Syndrome (EDS) which involves faulty collagen, which is the glue that holds our bodies together, so I am literally falling apart. Ehlers Danlos in my case, involves multiple joint dislocations and subluxations every day, generalised pain and fatigue, a seven year old migraine, a neurological condition called dysautonomia, and a wide range of medical problems involving my organs. I use a wheelchair. I also have autism, Complex Post Traumatic Stress Disorder (c-PTSD), anxiety disorder, dysthymia, and a few common medical problems such as asthma and sleep apnoea.
My two children also have EDS and autism and a handful of other medical problems between them, a couple of them severe. My husband has a disability and medical problems, some of which are severe. He also had a heart attack two years ago, and we are just over a two-year cancer scare.
Needless to say, our family spends quite a lot of time dealing with disability and illness.
Now, my husband is just the best. He is now my full-time carer, however even when he was working, he took over all physical aspects of caring for the house and children. When our babies needed feeding, he would go and collect them, and put them on my breast while I was still half asleep. It’s entirely possible I slept through some feeds entirely. He would then take them back to bed before crawling into his own. And my children both needed feeding a lot. Every hour or so to be exact. They are still terrible sleepers, ten years later.
Despite my autistic husband’s angel-like nature, he couldn’t organise a day in bed. Fortunately, with my Obsessive Compulsive Disorder, organising is my thing. It’s what I do. Having an organised home and life is what I need to do, or I end up on the lounge, unable to move, sometimes for weeks at a time.
So all this organising of disability and illness falls to me. I’m not complaining – it’s a more than fair share of the load. However it does get a little ridiculous at times, between all the medical appointments, specialist appointments, trips to the capital city for hospital appointments, therapy appointments (when we have the money), appointments at the school to engage both teachers and case managers in regards to support and accommodations etc., all the research required not only in general but also because a lot of our conditions are rare and there are no information leaflets our doctors can simply hand us, and no organisations to call to ask questions or receive support. There are medications to research, and keep track of, and take. At times, I have to research whether I can have an operation or treatment or not, because my specialist knows nothing about EDS, and the way it can affect your body differently than everyone else (and thus, the operation or treatment will affect us differently than everyone else). Physical therapies are the same – doing some therapies in the normal manner can damage us, so we ourselves have to research what to do, and then educate the therapist. We also have to have meetings and goal planning sessions with support case managers (from three different agencies, because our funding comes from different government departments). Then we have to have meetings with new support workers, and each time it takes an hour or two to go over all our medical requirements. Approximately every month, it seems one particular support agency has new forms about this, that, or the other, to fill out, or to get my doctor to fill out. The school has forms for me to fill out. The government has forms for me to fill out.
I’m really really good at filling out forms!
And all of this is FUCKING EXHAUSTING!!!
Add to this workload the fact that I’m incredibly physically sick, tired, in pain, and autistic to boot. An average healthy person would have trouble dealing with all this – and I know this because I read (healthy neurotypical) mothers with one disabled child bemoaning how difficult it all is. And although I slap myself immediately afterwards, I can’t help but think “swap ya!” I in no way wish to invalidate anyone’s feelings or pain, however that is the honest truth to it. That is my first thought.
My second thought is always that pain is pain, whether emotional or physical, and you can neither measure nor compare one person’s pain to another.
It would drive a person absolutely bonkers if they didn’t have a break every now and then. And as we can very rarely afford to take any kind of holiday away, I came up with another plan. And a catchy name.
Disability Free December.
During the month of December, I have a break. Unless an emergency presents itself, or an appointment with someone nearly impossible to see, or with a waiting list over a year long, I refuse to have medical appointments during December. I refuse to do any research during December. I still must do certain things – keep our medications on track, have meetings with schools, etc. – however I cancel anything and everything that I can without compromising our base care.
I have the month off. And it is bliss. I focus on Christmas, and spoiling everyone I can, especially my children. I laze around even more than normal. I try even harder to get out of the house and have family outings. We do our best to visit family, and we invite friends to visit us. One year I even held a Christmas Eve party, and I hope to again, possibly even making it a tradition. Some years I am too sick to put the effort in, however I always try to make the house as “Christmasy” as possible. I do my nails, and have long showers. I regroup and recharge. I even cook!!!
This idea of having a break is one I definitely recommend to anyone, whether they have a disability or illness or not. As I said before, we all have our own stresses and pain, and your stress and pain is just as valid as anyone else’s. If you need a break, take one, for however long works for you. Maybe you would like to take my idea of a “Disability Free December” and run with it, or maybe you would like to have another month off, or maybe you might prefer to have a few days off every month. At any rate, I strongly suggest that if you are finding life stressful, or if you are dealing with pain (physical or emotional), that you have a break. Pamper yourself as much as you can. Unless the issues are emergencies, they can probably wait a while. There is nothing wrong with rescheduling appointments, etc.
Take care of you first. That is the only way you will be able to continue looking after the people you love – and that list should include yourself.
- A Happy Box – a box filled with things that make you happy, or things to do to distract you from your worries (for those who self-harm, this idea can also be used as a distraction). Ideas include photos, music, magazines, books, colouring supplies, art and craft supplies, a pack of cards, fiddle toys, small stuffed animals, trinkets, spiritual items, or the essential block of chocolate (or equivalent).
- Paint your nails.
- Have a long shower. If you are worried about water consumption, skip a shower the day before. Or make your partner skip theirs *evil grin*.
- Get a haircut.
- Buy your favourite magazine, and read it at a coffee shop while enjoying your favourite beverage.
- Snuggle with a fluffy animal (either your own, or someone else’s, or go to a pet store or shelter).
- Buy a fish.
- Binge watch your favourite television show.
- Go to dinner with friends, or have them over for dinner, or ask them to have you over for dinner.
- Watch the sunrise.
- Watch the sunset.
- Declutter your home. Or a room. Or a drawer.
- Volunteer your time, either online or in person.
- Create a reading space in your home. Include a comfortable chair or bed, adjustable lighting to suit the mood and conditions, pillows, blankets, a table for a beverage and snacks, possibly a fence if you have children that will disturb you *evil grin*.
- Go for a drive and explore somewhere you haven’t been before. It could be three hours away, or three minutes away.
- Sit by a creek or river or waterfall if you are lucky enough to live near one. The beach is also good for most souls.
- Anything that makes you breathe deep and relax. These are only some ideas. Pampering is as individual as you are.
About Linda Wemyss
Linda is a writer, wife, mother to two children, and slave to two cats. She identifies as Autistic (diagnosed), and has Ehlers Danlos Syndrome, as well as a variety of chronic medical conditions. Living in sunny Queensland, Linda likes to scrapbook, make beaded jewellery and explore different art mediums (usually mashed together).
Read more at Linda’s blog here.