Aging it happens to all of us but aging with chronic illness has its own special circumstances. Regardless of disease or disorder we are aware of the changes and decline of age more acutely than most. By thirteen I was well acquainted with crutches, wheelchairs, x-rays, and bone scans. By age nineteen id been through more gastroenterologist’s, scopes, barium, and scans than most sixty year old’s. That’s a lot of medical experience for less than two decades on this earth and yet it only continues to grow.
None of these things are surprising to me, much is even expected. That is something you learn to accept in a dysfunctional body. A life in part of being the Guinea Pig, pin cushion, and learning how to cope with the next dysfunction. It would be easier to accept these realities if medical staff could remember their end of this long standing arrangement.
We seek their experience, divulge our symptoms, endure sometimes painful and humiliating tests hopefully performed by someone with more than a grain of decorum and compassion if were lucky. In return for those sacrifices of the patient the doctors are supposed to seek answers. Not merely the easy or expected answers and this is where the failure lies. Let me elaborate for a moment.
When I was thirteen and my knees were in incredible unrelenting pain and increasingly unable to bear weight I received no answers. There were blood tests, x-rays, and bone scans. They eliminated cancers, only saw mild arthritis, and then they stopped looking. I was no better off than when I came to them in fact I was worse after injections of radioactive dye, various drugs, having my limbs pulled and positioned for multiple scans, and several hospital stays filled with ignorant doctors and nurses who had no idea how to handle a out of the ordinary issue other than to belittle my situation and pain.
Only recently now at twenty-six years old am I beginning to unravel that situation. How a normal growth spurt in someone with a connective tissue disorder can end up infinitely more complex than typical “growing pains”. That it was likely the pain I experienced was from constant subluxations and possible dislocations of my joints. With tissue to lax to hold things in place and changing bone surface during growth phases my knees were about as stable as the end of a Jenga game. Yet somehow it eluded multiple doctors and technicians that their patient could move her knee caps far outside of the normal range of motion with the mere force of two fingers.
This is aging with chronic illness. Being misdiagnosed and misunderstood due to the digits of your age rather than the merit of your symptoms. We often aren’t expected or textbook which leads to frustration for both doctor and patient. While doctors can dismiss us or discontinue care we are stuck with the same symptoms we came with but no more understanding or answers.
When your left in the situation on your own its discouraging. If doctors wont help you who will? As the saying goes you have to show up for yourself because there is no white knight coming to save you. You research, you network, you find every medical supply shop within five zip codes. Thankfully now in the age of google on your phone you have options and the weight of customer reviews to aid your choices.
Still it seems there are as many options out there as there are problems that sent you seeking them. When it comes to braces in particular there is often little to no insurance coverage. This leads to a costly road of experimentation and failure. For instance upon noticing my carpal bones dislocating from the force of chopping a sweet potato a few years back I began looking into something to stabilize my wrist. It took me multiple trips to drug stores, general stores, and medical supply trying on dozens and over time buying six different braces until I found one suitable for regular use all at my own cost. This is not only frustrating but costly on a limited budget of someone trying to survive on meager disability payments. Financial restrictions restrict quality of life when your reliant upon external aids to hold your body together. Especially so if your in a situation to need custom devices such as the knee braces I’m still awaiting a referral for fitting.
Whatever the cause when your body comes with a “very limited” lifetime warranty your in an endless battle for means to cope. My current arsenal includes a variety of canes, impending forearm crutches, a wheelchair that needs an upgrade, two wrist braces, several sets of compression gloves, Oval 8 ring splints, and a variety of shoes depending on what joint is the most unstable that day. Then there’s the average accessories of the aging such as eye glasses, electric can opener, and many tools with over sized easy grip handles. Not things I imagined myself toting around before fifty much less before twenty-five.
The premature wear and tear has more than financial tolls to pay. Going shopping you have to strategize. How will I get there, can I drive, arrange a ride? Will my chair or crutches fit? Is there room for my gear and my groceries? Who closes first the pharmacy or the market, can I make both today? If the isles aren’t wide enough or there is construction how can I effectively get to the goods to buy? How many and where are the nearest restroom with a accessible stall? If I need to rest before I can get home will my food spoil? Dividing your lists based on the weight and volume of what you can feasibly carry rather than what you’d prefer to get at the moment. When I get home will I be able to reach to put away those paper towels or will they spend the weekend on the garage floor obstructing the washing machine till I recover?
What are the tools you find most effective in helping you adapt? Are you able to receive coverage for these aids? What lifestyle changes have you made to ease your days?
I’m 42 and only found out this year that my lifelong litany of medical woes has been due to Ehlers-Danlos Syndrome. As my symptoms have progressed significantly in the past few years, I’ve had to start looking for lifestyle changes like you mention. It took a long time to stop being ashamed of the fact that grocery shopping is now so draining mentally and physically that I’m nonfunctional for the rest of the day–how useless am I if I can’t even buy food and then cook it for dinner in the same day? However, I have finally accepted that grocery deliver through Peapod is not embarassing–if friends and family can’t understand that this is necessary and not an indulgence of laziness, then I’ve accepted that this is their failure, not mine. I’ve learned that the weekly cost of using Blue Apron–which takes away the work of choosing menus, shopping for ingredients, and overbuying things like produce when I’m only cooking for two of us–is SO worth it when it means I am cooking three meals a week with healthy, fresh vegetables and can feel like I am contributing by feeding my husband well. By eliminating the chores that wear me out, I have saved energy that I can now put toward the most essential parts of daily living. Does it just look like I’m being lazy to other people? Maybe. Do I care? Not anymore. Well, at least most of the time. I’m working on it.
Hello Amy! Im so glad you have found good coping resources to make your life more manageable. Those delivery services can save so much unnecessary stress and help you save “spoons” for the activities that best benefit you. Acceptance self or others is a long road im glad your finding some peace in what you need to do.