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When Life Gives You Chronic Illness Lemons...

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We all know the saying, “When life gives you lemons, use them to make lemonade.”

It conjures up the notion of strength, determination, optimism, resourcefulness, resilience.

All characteristics I’ve drawn on to deal with the “chronic illness lemons” continuously thrown at me. My lemons often feel like tennis balls in one of those practice machines. You know the ones that keep pumping out the balls, so you can practice your forehand or backhand. I also feel like I could open a factory to produce my own brand of lemonade given the number of lemons I’m juggling.

I know I’m not alone and I can feel many of my readers nodding with great understanding.

Lemon Juggling

There are days when my lemons all come at once. I need to be a circus juggler. I often talk about my bone pain, from my broken bones and bone disease, as it’s generally all-consuming. However, I also have a pesky stoma, niggling trigeminal neuralgia, chronic sinusitis, bladder issues, significant hair loss, gastroparesis and rheumatoid arthritis. These are my main lemons.

Additional lemons are often thrown in like vertigo, nausea, chronic fatigue or just unexpected life events. These lemons sometimes, no actually often, all play up at once. They don’t care if I’m tired or have to get ready for an appointment. They don’t care if I’d like to relax while watching a movie or a favorite TV show. These lemons love to interrupt, disturb, poke, prod and generally misbehave, when I definitely have no desire to make lemonade!

So, what can I, or any of us do, on lemon juggling days? We can only try to find a way to make lemonade!!

My Brand of Lemonade

We are all unique, so my brand of lemonade will likely look a little different to yours. I want mine to be clear, not cloudy. I want it to be a little sweet but not sugary. I want it to be soothing, comforting, refreshing. I want it to have ingredients that will complement the lemons and remove the sour, acidic taste they have if left raw.

There is the key.

A range of ingredients all working together will help manage my lemons and make my lemonade special, unique and right for me.

My Lemonade Ingredients

There are a few key elements to my lemonade. Some are tangible and some intangible. My intangible lemonade ingredients are so important:

  • Faith — not just my faith in God but faith in my medical team;
  • Hope — tomorrow will be a better day;
  • Love — a great reason to push through. Love for my husband and family;
  • Trust — in medical advice, carers;
  • Courage — ability to not give up;
  • Patience — realistic expectations of myself, of others and of processes;
  • Determination — resolve to push through pain and achieve goals (even basic hygiene needs);
  • Peace — keeping stress levels under control;
  • Optimism — always finding a reason to smile and be grateful.

Each of these intangible ingredients help me move through the barrage of lemons which are trying to prevent me from achieving a goal.

Each of them help me find reasons to keep going when there is every reason to stay in bed and pull the covers over my head.

My tangible lemonade ingredients include:

  • Medication
  • Bed Rest
  • Pacing
  • Gentle Exercise
  • Good Diet
  • Relaxation Time
  • Fresh Air
  • Writing
  • Connecting with family and friends
  • Good Hygiene
  • Grooming — Nice Clothes, Hair or Headwear and a little makeup
  • Tidy Home
  • Schedule of all tasks/ appointments/ birthdays/ special events etc in my phone

All of the above are crutches to lean on to keep me organized and give me a sense of control and well-being. When life’s lemons are pounding you from every direction, these ingredients, both tangible and intangible, will provide a navigation map. If you have them in place and ready to mix, they will ensure you can create a lemonade to drink in your time of need, and conquer what seems insurmountable.

A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

An Additional Ingredient Creating a Lemon Twist

Sometimes we need an additional ingredient. Something is just missing from our lemonade and it doesn’t quite taste right anymore.

I recently tried adding a very new ingredient. Medical cannabis! I’m at the end of my resources in terms of pain medication. Nothing is working anymore and I’m at the palliative stage of my treatment. It doesn’t mean I’m about to die, although some days it feels like it. It means we have run out of options. There is no treatment and no cure and even surgery to hold me together is now off the table, so to speak, as my bones are too unpredictable.

Thankfully Australia is allowing people, with certain medical conditions to access medical cannabis legally under the Special Access Scheme. The downside is, it’s at the patient’s own expense, and is likely to be two or three years away from being added to the Pharmaceutical Benefits Scheme (PBS). The good news for me, aside from the cost, I was approved under the scheme to start using medical cannabis.

The Therapeutics Goods Association (Health Department) prescribed me an Australian made product called LGP Classic 10:10. It’s a combined product with 50% THC and 50% CBD. This combination is likely to be the best for chronic pain. I started on a low dose twice a day and was advised, if it wasn’t working, to increase the dose every three to four days until I reached 1 ml twice a day. I was monitored fortnightly by the Cannabis Access Clinic Doctor and was encouraged to know if the first product didn’t work, there were numerous others to choose from.

I needed to draw on some intangible lemonade ingredients too. I need hope. Hope it would work. Hope the Australian Government will recognize the need for this medication to be approved as a PBS product. I simply couldn’t afford its cost ongoing if it’s not.

I was watching the TV show “New Amsterdam” and one of the patients could no longer afford her insulin to treat her life-threatening diabetes. She said to Max, the hospital CEO, “I can’t afford to live..

Those words just hit me so hard.

“I can’t afford to live.”

The script writer couldn’t have penned more powerful words. The sad thing is, so many people living with chronic illness are in this position.

It’s not a TV show, it’s our reality.

I was so grateful for the opportunity to add this extra ingredient to my lemonade. I was feeling optimistic it would make a difference and trusting our government will eventually do the right thing, and make the changes necessary to legislation to make it affordable for approved patients.

Unfortunately my hope was short lived. I reacted badly to the two products I tried and simply couldn’t afford the costs associated with continuing to try further products.

My long term hope remains. If the product is eventually subsidized by the government, I can try again. It’s a “Lemon Twist” scenario. Eventually I’ll make sweet lemonade out of this situation and that’s OK.

How’s Your Lemonade Tasting?

If you feel like the lemons are being fired at you from every direction, take a break.

Breathe. Cancel all activities.

Make some time to just sit for a while.

Once you’ve done that, it’s time to make some lemonade.

What are your intangible ingredients? What do you need to give you emotional well-being. This is an important starting point. When we don’t feel strong emotionally, it’s makes it so much harder to deal with the physical issues.

What are your tangible ingredients? Write them down, even the ones you know you need, but don’t have yet or aren’t doing yet. This lemonade needs to contain all the things you know are good for you.

Once you’ve got your ingredients sorted, it’s time to gather them together so you can turn your lemons into a lemon twist. It’s a process, it may take time weeks or months maybe. It’s your recipe and it’s a roadmap to get you to where you need to be, to handle the lemons that life throws at you.

Let’s raise a glass together.


Getty image via YelenaYemchuk

Originally published: August 21, 2020
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