Learning to Live With It

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.

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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.

gin-2126375_960_720But 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

Support Groups

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.

Counselling

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

female-865110_960_720Writing 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.

Pain Diary

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.

pain diary 2018If 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.

Self-help techniques

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.


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30 thoughts on “Learning to Live With It

  1. Your posts are so positive and you give your readers so much hope and coping techniques for chronic pain. I like the idea that you can still have a great life despite what ails you. So inspirational and helpful

    Liked by 1 person

  2. You are so inspirational. I love this honest look at feelings you may experience and how to deal with the ways a chronic illness can affect your life. You have so many great suggestions here.

    Liked by 1 person

  3. Positivity for something not so positive! I am so glad that you’ve been able to provide a list for others on how to deal with such negativity in a positive and productive way!

    Liked by 1 person

  4. I love the finding new options to achieve the same tasks you once did, or at least even a modified version. My husband and I do that sometimes with tasks around the house. I’m short and fat (I know, not medical conditions, just genetics and a love of food) and some things are harder for me until I lose weight. So he’s always asking how we can do something that works for me. I love that you remind others that doing things like that are great. Having a chronic condition doesn’t mean the end of the life you once enjoyed. It can still be achieved, just not in the same way.

    Liked by 1 person

  5. I like how you opened with something positive, Spring, and you ended with hope. It’s always encouraging when people who are going through a very hard trial can still see the beauty in life. I was thinking, though, you don’t really explain in your article what the illness is. I think you named it but I never heard of it before and maybe other’s don’t know what it is either. So maybe for those of us who stumble upon your page in the middle, like this post, a simple explanation would be helpful. I’m just curious, that’s all.

    Liked by 1 person

    1. Some of my earlier posts describe my illnesses in more detail. I should remember to put links to them in newer posts.

      Like

  6. You are such a positive person and I so appreciate that. I cannot imagine how frustrating it must be to have a doctor say, “learn to live with it.” I’m glad that you’ve found help through Facebook groups and, of course, writing. I know writing is my biggest form of therapy as well!

    Liked by 1 person

  7. I love the idea of exploring new ideas! It gives you hope! also, so important to get a support group-people who are going through the same struggles as you.

    Liked by 1 person

  8. I like your post. It is honest, real and vulnerable. I had a rib dislocation once for 6 months. And i would have given anything to get rid of that pain. So in some ways i can relate to you and in some ways i cannot. I am not sure if our GP or medical science has all the answers. But you have mentioned many ways of dealing and accepting it. Thanks Jerry Godinho

    Liked by 1 person

  9. I love that they have support groups for almost everything, many people don’t have a lot of shoulders to lean on if any, so it is nice people are willing to step up and help support one another. Managing any kind of illness can be difficult but having options like this is so helpful.

    Liked by 1 person

  10. I can’t speak from experience as I am not living with any health issues at the moment, but don’t give up! We only have 1 life to live and we have to live life to the fullest!

    Liked by 1 person

  11. I know it must be easy for us to say and so difficult to actually handle such heartbreaking moments when it comes to illness. But despite that there are outlets through which one channelizes their strengths with positive and satisfying achievements.

    Liked by 1 person

  12. Sorry I did not like all of this. To say there is nothing else we can do about this…is to give up. To say just write down what bothered you and throw it away, such as a Doctor stating the infamous , “there is nothing we can do about this”. I would say don’t give up get a second opinion, do more investigation. Nope I will never accept ” there is nothing else we can do about this!! ” Maybe you can write it and throw it away. But don’t ever give up!!!! I suffer from Chronic Migraines and Trigeminal Neuralgia. Thank you for reading my opinion.

    Liked by 1 person

    1. There’s a big difference between accepting reality and giving up – and the reality is there are limitations to what medications and surgeries can achieve. Recognising that, and managing the emotional impact of it, is not giving up.

      Like

  13. I like this. We always need to look for signs of Spring and if we look hard enough, we’ll find them.

    You are correct – not all doctors are created equal. Most of them hate that they can’t help us more. They didn’t study medicine to not treat people. They want to help us, so it is probably difficult for them too when they can’t actually do more for us. We do have to learn to live with our health issues, and you’ve given some great suggestions to help people do just that.

    Liked by 1 person

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