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My New Chronic Illness Mantra on Honoring My Body's Limits

I’m beginning to realize I haven’t been afforded the space from the people in my life to appropriately grieve for the life I’ve lost since being diagnosed with lupus and fibromyalgia. Since my health has declined so dramatically over the past few years that I have lost the ability to even maintain a basic level of gainful employment, things have been heartbreakingly difficult. Although I was able to fight for and win the disability benefits I and my child so desperately need, the monthly stipend paid out to me by the federal government is not even enough to meet the basic needs of a family. The loss of my personal agency, loss of my ability to provide for myself and my child and the loss of my personal life have all been devastating.

Is this something that you ever stop grieving for? When I look out at a beautiful sunny day, I remember when I used to plan an impromptu drive out to the wilderness to hike, take my bicycle out on my city’s numerous and beautiful trails or just bum around with a delicious lack of plans, packing only a sense of adventure.

Now my autoimmunity is triggered by the beautiful sun, causing skin-scarring rashes, fatigue, fevers and chest inflammation. I can still hike if I plan to devote myself to rest for days before and for many days after, as well as steeling myself against the terrible pain I will endure in my joints and muscles both during my “enjoyable hike” and the days afterwards, during which I’ll be bed-bound. Bumming around just doesn’t work anymore, because I only have a couple of hours of productivity before crushing fatigue and terrible pain sets in. I need to have a plan of action for getting my daughter ready for and to school, caring for my dogs and completing the most basic of household chores, such as essential cleaning, grocery shopping and paying bills.

I know I’ve turned into somewhat of a recluse and I often have terrible anxiety when I think about leaving the house, whether for errands or enjoyment. I know no matter how tired or in pain I am when I leave, its only going to get worse. Depending on the environmental factors, such as sunlight, temperature, chemical smells, loud noises or crowded areas, I might only be able to cope for an hour or two. I’ll be clenching my jaw, trying to power through the pain, fatigue and brain fog. I’ll tense my muscles, unconsciously trying to muster the psychic strength to fight off weakness and severe pain.

Wouldn’t the constant worry of being in terrible pain while losing your mental faculties to brain-fog be enough to cause any person to fear leaving their house? Forget about enjoying what I’ve left the house to do, I’m flat-out trying to survive and make it through. Of course during my entire time out I’m attempting to seem normal, trying to engage socially to fill the empty void that my social life has grown into and maintain the outward appearance of a functional person.

This whole time, I’ve felt like I’ve been doing something wrong. That I’m a bad person for not wanting to leave the house. That I’m ruining my family’s lives by not wanting to hike, camp and generally enjoy the great outdoors. I struggle with feelings of being an inadequate and unexciting wife, a bed or couch-bound lump of a person with a dusty house and a depressive attitude.

But wait…I do want to enjoy the great outdoors. I don’t want to have a dusty house and schlepp my pain-wracked body between bed and couch. I sure would like to go out with my spouse for cocktails and a show, but I can’t escape this body that pain inhabits alongside my personality and soul. My new “normal” is swollen joints, painful breaths, frightening dizziness, ugly rashes, fevers, sores, vomiting, diarrhea and crippling headaches. It sounds like hell, doesn’t it? Unfortunately it’s not a spiritual concept but my actual, every day life.

Am I really doing something wrong by not participating in the activities I can no longer bear due to physical illness and disability? Why is fulfilling others’ expectations of who I should be more important than fulfilling my body’s need for rest and quiet? Am I really in the wrong for not ensuring I meet everyone else’s needs while I am expected to struggle in silence? I’m not only expected to struggle though, but also to put on a fake, brave face of enjoyment. I understand that for healthy, able-bodied individuals my list of symptoms sound impossible to experience regularly and survive.  I guess that’s why I’m so tired all of the time, which no one around me really seems to understand.

No, my daily grief is swept under the rug. The times I break down and refuse to go outdoors when the shining sun causes my body to attack itself, the times my frayed nerves can’t handle a loud show or the times my vital organs are under attack from the ravages of lupus are when I’m cast as the kill-joy holding others back from their fulfillment.

I’m accused of being the person responsible for holding back everyone from living their lives, being the stick-in-the-mud and accused of being lazy or resistant. My spouse was frustrated with my refusal to hike after my one trip in the early summer caused a months-long lupus flare, resulting in skin-disfigurement from lupus rashes. She told me she finally realized I wasn’t going to be joining her on any more hikes because she “guessed” I couldn’t participate due to my health.

Hearing her say she guessed I couldn’t because of my health was heart breaking. The person who has stayed with me through it all is finally “guessing” I can’t do the things I once loved. I guess being legally declared disabled isn’t convincing enough that I’m having some serious issues. I guess giving up my career aspirations, missing out on family activities and being on a pharmacy’s worth amount of medication is still leaving my health status in a dubious gray area.

Bearing the burden of everyone’s disappointment in my loss of capabilities and having to be an understanding friend/spouse about everyone else’s frustration has left me burned out and unable to address my own disappointment and frustrations with my own body. You know, this body I’m stuck in until I’m dead and am unable to anything ever again? Lupus and fibromyalgia, it kind of feels like a mini-death I’ve been dealt, but I haven’t been able to vent to anyone or grieve for myself properly.

I’m really sorry I can’t do the things I want to and everyone else is upset because I don’t want to join the party. At least they have the option of opening the front door, walking out and meeting the day head-on without the knowledge that pain, exhaustion and anxiety are along for the ride or trailing just closely behind.

I had an epiphany today though. I’m not actually doing anything wrong or hurting anybody by needing to have a quiet, slow-paced and home-centered life. This thought popped in my head and I’ve been repeating it over and over, both mentally and verbally.

I’m not doing anything wrong or hurting anybody by honoring my body’s limits.

My limits are debilitating, it’s true. But my daughter still goes to one of the city’s best schools, participates in after-school clubs, enjoys lovingly prepared meals and gets lots of playdates at our house. My dogs still get walks, park trips and love. My spouse still has clean laundry, packed lunches and a wife that is always at home. Maybe I’m not the most exciting mom or the most singularly adventurous spouse, but I am unfailingly here for my loved ones.

My presence isn’t fulfilling the roles everyone has cast for me, but I’m really trying my best. When I do show up at an event, I’m doing it at a cost to my health. Of course, every day that I don’t fulfill my desires to attend any given event, I’m also doing so at a cost to my mental, emotional and social health.

I guess the thing I wish that those closest to me could realize is I’m not having too much fun either. I’m stuck between a rock and hard place here. Do I endure pain and misery which could catapult me into a medically risky flare, or do I stay home alone with just my dogs to talk nonsense to all day? Chronic illness is confusing, draining and can be a real life-ruiner.

I feel like I’ve been cast into stormy and unpredictable seas that now define my life. I must try to keep afloat within these waters without drowning. With chronic illness, there are a lot of perils to which one could succumb. Physical illness, depression and other metal illnesses, loneliness (oh the loneliness!), financial insolvency and loss of a sense of self.

Like Avril Lavigne’s song about her struggles with Lyme disease, I’m just trying to keep my head above water. Please don’t let me drown, or at the very least, don’t weigh me down in a leaden vest of your disappointments and a list of my failures to meet your expectations. I’m not doing anything wrong, I’m not hurting anybody by trying to manage my limits that change daily or sometimes hourly. I can hardly tread water in the turbulent waters of chronic illness under the weight of my own sadness, loss and grief. Please don’t make me carry your burden too.

To my fellow chronic illness warriors out there: I see your struggle. We often feel so alone.  We often feel like such a let down to ourselves and to those we love. Don’t stop showing up everyday for yourself, even if that day looks like not getting out of bed save for bathroom breaks and simple meals.

Have you ever considered that you also are not doing anything wrong and maybe we deserve more love, respect and support than we have been shown? Our illnesses aren’t our fault; we didn’t ask for this and we don’t need to be taken on a guilt-trip, no matter what the other person’s intentions may be. Chronic illness is the long-haul partner we never wanted and we have to play the long-game to get by day to day.

If you can’t find from others the compassion and empathy you deserve, you’re going to have to foster it within yourself, for yourself. This thought I’ve had is my new mantra. You also have the power to claim a sense of deserving the time to heal, recuperate and grieve for yourself without the nagging feeling of not being enough or doing enough for others.

Getty image by juli-julia

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