It’s the middle of winter here in New Zealand, and we’re already seeing signs of new life all around. It’s a gorgeous, sunny day today so I’ve just had a traipse through my garden. It’s heaving with welcome signs of spring, like the purple flowers starting to put out their spears on the hebe shrub, and the yellow flowers on the succulent I don’t know the name of. It’s been looking a bit bedraggled this winter after a hefty prune in autumn, but its purple leaves are beginning to get that lovely polished shine like plums.
There’s the unwelcome ones too – dandelions poking their noses in everywhere and some scrubby, groundcover thing with pinky starflowers and suckers that will cover the entire lawn if it’s allowed. And one sign that should probably be unwelcome, but is very pretty – a patch of bright yellow flowers like floppy hats, growing under the cabbage trees. Probably I should rip it out by the roots and incinerate it now as I’ve a suspicion that it’s clover and that stuff will encroach like crazy, but the grass is so long it’s hard to see what the flowers are attached to.
In my ‘previous life’, before my health crapped out and I had to learn to eke out my energy with economy in mind, I’d have got straight out there today and mowed the lawn, dug out some dandelions and whipped all the weeds out from under the shrubs and trees while my husband built the raised beds we’ve been planning for veggies. They’ll need to be planted soon.
But it’s this life, and I’ve had to learn to live with it. I can plant and prune and weed and water, but any digging or mowing that needs to be done is my husband’s job these days. Some things are pretty easy to learn to live with though – sit in the sunshine with a gin and tonic and a gardening magazine while he gets his hands dirty? Don’t mind if I do!
Learning to live with it isn’t all gin and tonic and sunshine though. How many of us with chronic health conditions have heard the phrase ‘You’ll have to learn to live with it.’ from our doctors because there is nothing else they can do?
When you have a chronic condition that is rare and poorly understood or difficult to treat, that is progressive or has no cure, it’s not unusual for doctors to run up against a dead end in treatment. Surgery isn’t always an option. Patients might have allergic reactions to medications. Heavy-duty medications used for conditions like trigeminal neuralgia sometimes cause liver damage after prolonged use, and often become less effective long-term. There is a limit to what medications can achieve – they relieve symptoms but can’t necessarily reverse a condition, or cure it.
When doctors say you’ll have to learn to live with it, they are not washing their hands of you. They are being realisitic – they are out of treatment options.
But not all doctors are created equal. I’ve had some great GPs and specialists, some good ones and one that was a bloody disgrace. So sometimes they are out of treatment options because they don’t know enough about the condition you have – as a patient you may have to advocate for yourself for trying particular medications, getting second opinions etc. And sometimes they are out of options because there really is nothing more they can do to treat your condition.
It is hard to hear that there is no hope of a cure or a treatment for your condition. Patients are often angry, shocked, frightened, confused and, particularly if the doctors bedside manner is lacking, interpret you have to learn to live with it as the doctor being dismissive and cruel rather than realistic and honest.
Ways to Find Acceptance
We all need a sense of belonging, and all too often chronic illness is an isolating experience. Try and find a support group for your condition in your area so you can meet with other people who face the same type of issues.
Online is an option too – search for groups on Facebook that you can join. Or start one yourself.
Life changes, sometimes beyond recognition, when chronic illness comes calling. You may have to give up work. You may have to give up activities you love. You may find friends and family get impatient with you, or drift away.
A good counsellor will help you find a way through the tangle of emotions like grief, anger, resentment, fear that big life changes and losses incur.
Writing and Art as Therapy
Writing and art are effective therapies you can do for yourself at home. Some examples:
- write down all your negative feelings and thoughts – then throw the list away. It’s a good way to express things you can’t or don’t want to say to other people
- write a letter to whoever has upset or angered you -your doctor/family member/friend. Tell them exactly what you think of them and why. Then throw it away.
Throwing these pieces of writing away is a symbolic act of getting rid of the feelings that are dragging you down.
- write a list, focusing specifically on your health issues, of all the things you think should not have happened to you, all the things that frighten you or make you angry etc., all the things you hate. Then write another list of all the opposites – what happened that helped, what has made you feel happy or brave, all the good things.
Words can be difficult to find so art makes a good alternative. Any art activity makes a good distraction or relaxation activity, but there are also specially designed art therapy activities which help you work through your emotions.
Sometimes a doctor will ask you to keep one for a number of weeks to help them assess your condition. Pain diaries are versatile tools that help us get a detailed overview of our conditions and how to manage them. Have a think about what you need to include in yours. What I needed to record for EDS is quite different from the symptoms I needed to get a handle on for Sjogren’s Syndrome.
You might need one that focuses on pain, or fatigue. You might need to include hour by hour changes. You might need to include sleep patterns or diet habits. Find an app that suits you, or design your own.
If you are completing a pain diary for trigeminal neuralgia, recording the time, duration and intensity of attacks is a good start for helping you recognise any patterns in your pain. To get a comprehensive view of the impact the pain has on your life and of specific things that trigger your pain, you’ll need more columns. Include columns for describing the pain, recording what medications/treatments you have, food & drink consumed, activities undertaken, daily self-care tasks, temperature and weather, and general comments on your mood/sleep/stress. You’ll start to see which of these things are problematic, and to what extent.
NB: A diary is a good interim approach, but it does make you focus a lot of attention on your pain/illness, which is sometimes counterproductive. Once I had a pretty good handle on my triggers and the best ways of relieving flare-ups, I stopped keeping the diary and started focusing on more positive things.
I’ve written before about how breathing exercises, relaxation, Mindfulness etc help manage pain, and stress and insommnia. They are also great mood enhancers. If you feel relaxed it’s less difficult to tackle difficult emotional situations.
Explore New Ideas
You may get into a trap of thinking you can’t do the things you used to love because of pain, fatigue, etc. But very often, you can find new ways to do things – I can’t say I ever loved digging or mowing, but I do love having a nice garden. But now my husband does the heavy lifting tasks, and we are redesigning the garden with raised beds so I can be more involved in the planting and growing and tending.
What things do you like doing? List what makes them difficult for you. Then list some positive solutions – do the activity for a shorter time, get a disability aid like a walking stick, change the time or place you do them…
Maybe you do have to stop the activity altogether. Write a list of new skills/hobbies you’d like to learn. Arts and crafts, music, cooking, tying flies for fishing, learning the history of architecture… let your imagination go wild with possibilities.
Even in the middle of winter, if you look for signs of spring, you’ll find them.