This post is written by Michelle Curtis. She is a poet, blogger and freelance writer living in the greater Cincinnati area with her adorable Russian blue kitties and husband.
My husband, David, and I have joked for years about how we couldn’t string together a healthy person if you combined the two of us. We even tried throwing our son into the mix and still fall quite short! We knew this when we decided to get married 15 years ago.
As soon as I knew things were serious, I shared my health problems with him and my fears about the future and he confessed to some mental health issues he’d been through himself. We entered into our marriage with open eyes and a willingness to pick up the slack of the other in the areas where we fall short.
While fate was a bit cruel and I was forced into full disability when we still practically newlyweds, it’s been somewhat more kind where David’s health is concerned. As our conditions have ebbed and flowed, we’ve learned the dance of compromise. When my husband’s own health issues started becoming disabling, we shrugged, we hugged, and we pressed on. But the lessons haven’t stopped coming.
I have a trio of conditions that affect my whole body, from my mobility to my blood pressure and my brain to my colon. I have a list of comorbid conditions that read like entries in a medical dictionary. Life can be pretty tough sometimes when you have multiple disabling conditions. Having a life partner who is willing to help take up some of the slack around the home can be truly invaluable. Until recently, David has been that person for me.
Over the last decade especially, my husband has been a huge help, not only in managing some of the more physically challenging aspects of caring for our home, but also in caring for me. He’s helped me complete my massage therapy every week by taking care of the hard to reach places and even taking it over entirely during those times when I simply don’t have the strength and energy to do it on my own.
He plays nursemaid as much as possible when I’m stuck in bed with overwhelming symptoms or healing an injury to my fragile soft tissues. He runs nearly all of the outside errands, ensuring our place of refuge is well stocked with food, medications and the supplies I need to care for myself and ensure our household runs smoothly. He often did more than his fair share of the household cleaning and caring for our animals, as well. There are so many things he’s always done for me, I could write a post about that
Over the last two years, David started experiencing dizzy spells and other symptoms that have grown increasingly worse and his fatigue levels have grown until they broken clear through the roof. Despite our best efforts, no one has been able to diagnose what’s going on. Distraught and defeated, he had no choice but to seek leave. In fact, when we went to his now new GP about it, he insisted my husband not only stop working, but stop driving, as well. My rock was crumbling and it was up to me to figure out
how to take up the slack.
When everything came to a head, we were both a little more than worried about our future and our ability to keep caring for ourselves and each other. Two months in, and it seems we have more questions than ever with no more answers than we began with regarding David’s health. Soon we’ll have to request an extension of his disability leave, which will eventually run out. Of course we’ve been through this before, but it makes it no less nerve wracking.
In some ways it’s worse, given he’s been our only income earner in a decade.
But we knew this was coming and I’ve been preparing for it. Since I’ve found some solutions to some of my own health problems, I’ve been working toward building my career as a freelance writer and blogger. It seems things are breaking just in the nick of time. Since David’s stuck at home and no longer doing his physically intensive job, he’s even been able to help me with my efforts there, allowing me a little more time and energy to meet the demands of cooking, cleaning and shopping more.
11 Ways We Work Together to Make Life Work
Things at home have changed quite a lot and yet very little. We have some new rules. We’ve put an emphasis on patience and prioritization because we can’t just ask someone else. We use mindfulness techniques to keep the stress from piling up so we can be patient.
While I can’t magically change my ability or fatigue levels, I’ve been enjoying a larger spoon bank in recent months, so I have more energy to tackle some of the more physical stuff. In fact, I quite enjoy it. I also enjoy a very clean home, but it doesn’t always get cleaned, because in the grand scheme of things, a little annoying dust is by far
preferable to lacking the spoons necessary to put an evening meal together. Here are a few more things we’ve learned along the way.
1. Patience and understanding is golden, for yourself and each other. We always take the time to listen to each other’s complaints and we don’t compare our symptoms or issues. We just listen, ask questions for clarification and offer each other the compassion and understanding we have to offer.
2. Trust is absolutely essential. We have to be honest with each other about how we feel and whether or not doing something is going to cost us too much and we have to accept that our partner is just as honest. On those days we’re feeling alright, but a touch lazy, we owe it to the other to pull ourselves up by our boot-straps and do for ourselves, and our partner, if necessary. On our bad days, we have to be completely clear on what we can and cannot handle.
3. If you’ve been in the role of caretaker, it may be difficult to accept help from your disabled partner. You need to let go of the idea that you’re the caretaker and begin seeing yourself as part of a care team. Don’t argue when your disabled partner does for you, even if it feels uncomfortable at first. Just accept that you’re both always going to have to do the hard thing every now and then and it only makes it harder for them when you argue.
4. If you’re a pro at disability and your partner is just getting starting, be patient. Even if they took the journey with you, it’s completely different and they need to learn the same lessons you did. No amount of compassion can replace living it firsthand, so try to think back to when it was you and what you needed and do your best to fulfill those needs.
5. It’s okay to say no and not push yourself too far. We both have conditions featuring chronic fatigue and overdoing it every day can lead to a horrid flare.
6. Conservation is king. We owe it to ourselves and each other to avoid flares at every cost. Choosing the fun thing that’s going to deplete one of us completely is simply no longer an option. We have to tailor our entertainment and lives in a way that avoids this at all costs. This keeps the emergencies down and us more prepared when the emergencies do hit.
7. If energy conservation is king, prioritization is queen and compromise is prince. We each have our own agendas every day, but we’ve learned to check with each other so we can pick and choose. Likely, some of the things on our agendas are conflicting and we often help each other see the flaws and choose the most important items on the list. We prioritize in the following ways from greater importance to least:
a. Health related needs (hygiene, self care, therapy, movement, treatments, healthcare
b. Essential household functions (cooking, pet care, dishes, trash)
c. Job related work
d. Cleaning (bathroom, kitchen & laundry cleaning come first)
8. Be flexible. We come up with a list of things we want to accomplish every morning, but
inevitably things get pushed. Symptoms crop up that interfere, things sometimes take longer or are harder to do than anticipated or we just flat need a day off. That’s okay! Just stay calm and go with the flow. Things will get done eventually.
9. Don’t let clutter build up. With both having anxiety disorders that feed off of chaos, we benefit most from a clean, clutter-free environment. I learned very young that if I never leave a room, empty-handed, the clutter rarely builds up. If you’re heading to the bathroom, drop off those shoes in the bedroom next door. If you’re going to the kitchen, take your dishes with you. Headed to bed? Take your socks and hoodie with you. Put things away when you’re finished with them and you never have clutter!
10. Don’t let the joy drain from your lives. Chronic illness is stressful and serious and it’s very important that you’re in your best health to tackle whatever comes next. Part of that is still taking pleasure in the things you both enjoy, maintaining healthy intimacy in whatever way that works for you both, and working to maintain laughter and curiosity.
11. Communication is your best tool. You can’t address issues unless you’re willing to talk about them. If you open up and approach things as a team, it’s amazing what you can learn and accomplish together.
With these tips and a little creativity, you can make a relationship with two disabled people work. We may have gone into our relationship with open eyes and I still don’t think we could have possiblyanticipated much of what we experienced. If you truly love and support each other, you already have what you need to succeed.
If you still find yourself struggling to make life work, speaking with your doctor about the types of assistance you may be able to utilize to alleviate any gaps. If you feel like you have what it takes to tackle life alone together, but you’re having some communication issues, consider a few sessions with a counselor, who can act as a mediator in these discussions and help you to work on fostering better communication skills in your relationship. We go to our doctors for health advice. There’s nothing wrong
with utilizing helpers of all kinds!
I hope if you’re facing a similar situation with your partner that what I’ve shared today has helped. What are some lessons you have learned? We’d love to hear your ideas!