We did it! The Chronic Pain Couple got through a really tough 6 months.
As I’m enjoying a rare child-free night at home, the timing is right for me to share with you our recent journey and the lessons we learnt in hope that you can also find yourself on the other side of a rough patch with a stronger sense of hope and more love for your partner than you thought possible.
It all started the day I came across a beautiful old building on the other side of our town. Actually, the rough patch probably started earlier, on the day my toddler fell and knocked his two front teeth out but I’ll have lots of time to write about that over the next 3 to 4 years until finally, his adult teeth bust through.
So, let’s begin with the old office building that when I saw inside, knew had to be the home of our second health clinic. Johann (my husband) and I always enjoy having a project and my treatment was going to plan so it seemed manageable.
That was until my face exploded the day after we signed the building over to our company. Well it didn’t actually explode (which you probably gathered, since I’m writing this post…). I developed a serious infusion allergy which caused severe swelling (think eyes and ears swollen shut),urticaria (hives), psoriasis and widespread costochondritis (rib cage inflammation & pain, all symptoms added on top of my usual spinal, jaw, enthesitis and adenomyosis pain). I have a high pain tolerance but this was a real trial for me.
The day the builders started working on the new offices, it was confirmed the psoriasis and costochondritis were permanent, what are the chances of the side effects being permanent? According to research, <1% apparently! Fantastic…
We decided to persevere with the opening of the clinic, managing the situation by stripping back our extra activities (social media was first to go) and outsourcing more than we’d planned (mostly to our wonderful co-director). Josh our toddler unpacked boxes, and gave us free pillow, toy and electrical cord checks. But in all seriousness, we prioritised my treatment, family time, couple time and seeing our dream of the second clinic through. During the preparations and first months after opening, I trialled 3 new treatments, had a long hospital stay due to a second medication reaction (more details in my next post), a bucket of corticosteroid injections and a steady diet of steroids. The whole process was balanced out by a lot of rest though. Many evenings were spent as a family on a large bed we (permanently) set up on the loungeroom floor. ‘Cute, did you and Josh have a movie last night?’ visitors would ask.
It turned out it was worth reprioritising life to see the process through! We now have the most amazing team (along with our team at the first clinic of course), who are a delight to work with and are bringing a lot of hope to our community. During the recruitment process, it was made clear that chronic pain support for individuals and couples is an area we’re passionate about and we’re excited to be supporting more people with chronic pain each day. We understand that persistent pain is life changing and know good mental health for you during your pain journey and your partner, is vital for a great relationship.
Of course, I only share this with hope you’ll be encouraged to still discover your dreams while enduring persistent pain and reprioritise your life so your limited energy is used on activities you’re passionate about. You can still achieve big goals with persistent pain, you just need to master prioritisation, rest and asking for help.
A number of changes were made to assist us in achieving our goal while experiencing significant setbacks. Here are my favourites that I hope you find helpful:
To ensure 12 months from now you have no regrets, make a list of your priorities and goals. Realistically plan so you’re able to achieve more of the items at the top of the list. Most likely, if you experience persistent pain and want to achieve a big goal, you’ll need to drop some things from the bottom of the list.
Have your partner write a similar list and spend an evening deciding what goals you share and are realistic.
If there are barriers to your goals, write them down and problem solve each one.
If you decide to conquer a big goal that’s time consuming (like ours), consider saving time by preparing meals in bulk on the weekend. We prepared most weekday meals on Sunday together.
To achieve your goals while enduring chronic pain, get in the habit of continually assessing if what you’re working on is moving you closer to your chosen goals. It’s easy to get off track with projects. Remember rest is an important part of seeing your project through.
Schedule time to solely work on the project. We scheduled 4 blocks of time a week. Don’t check emails or turn your phone on during that time, it needs to be uninterrupted time.
Schedule rest into your diary. Taking care of your body and mind is your job. If you schedule it into a shared diary with your partner, it’s easier for you both to plan and accept the rest time.
Although you may not feel well enough to invest in another person, you need to put your partner as a priority. Ensure you have quality time weekly and save some of your best energy for that time with them. During our busiest time, we agreed the clinic preparations and resting was more important than new experiences and adventure (in the short term of course). This meant we enjoyed several months of date nights at home and were creative with our dates (e.g. setting up a backyard fire pit, having dinner delivered, watching a new TV series together). Don’t underestimate the time and energy that’s spent on planning an adventurous date, getting ready and travelling. New experiences are really important for a couple to build strength and excitement into a relationship but if you have mutually agreed on a big goal, that might be enough adventure you both need for a short period of time.
Outsource and simplify your life. My family can tell if I’m busy with a project just based on my hair style. I love to curl my hair. If I have a big project though, I can’t see the project through if I live like a person without pain and continue with my daily routines, being a mum and working. When I have a big project, the 10mins I usually spend on curling my hair is the first time to be repurposed. Don’t let yourself look back over the last 12 months and realise you prioritised your morning routine over a big project. You might think 10mins here and there doesn’t significantly change your progress, but for someone in pain it changes everything. Do the washing once a week instead of everyday, simplify your morning routine, do bulk cooking so you can use your dining out/take-away budget to pay a kid to mow your lawn.
A treatment related tip: Before starting a new treatment, write down the pros and cons and why you’ve decided to go ahead with it. Most medications and procedures have side effects so you can’t beat yourself up about your decisions after treatment if you have it in writing that it was your best or only option.