My husband and I are constantly making jokes, puns, or just spouting heavy sarcasm at home. The subject doesn’t matter, as we can find a way to make most situations funny. It can get morbid on occasion, but that’s how we work. I have no doubts my husband takes my diseases very seriously and the playfulness we have between each other are our way to bring joy back into my bad days. I believe it to be one of the reasons we do so well together. When I’m ill and can barely move, he can still make me laugh even if it hurts. Heck, I’ll probably make a joke about how he just makes me laugh because it hurts. It keeps our life full of laughter even when it seems there isn’t a reason to be happy.
Last week, my husband called me a hamster. This isn’t the first time we’ve called each other silly pet names. Without missing a beat, I returned “Your mother was a hamster and your father smelt of elderberries!” I thought that was the most logical reply, obviously. He laughed, but when he explained the reason he called me that, it hit home. Our jokes have never moved past the “humor” phase with me until this moment. He looked at me and said something I’ll never forget.
“You’re a hamster. When you first see a hamster, they’re cute, they seem relaxed, and they look happy doing their own thing. When you actually look at it, you can see that most of them are just little balls of anxiety and stress. Just living gives them anxiety. You’re anxiety wrapped in adorable.”
Of course, he meant it as a joke, but it opened my eyes more than I think he realized. I’ve been under a bit more stress than normal recently but that doesn’t change my pretty constant state of anxiety. It has really skyrocketed since my pulmonary embolisms a few years ago. I’m continuously thinking every ache or pain is another clot. Pair that with regular pain from my diseases and you have a hamster. I’m a wreck about my health, home, friends, and most of all, I’m a terrified my diseases are damaging my family.
I attempt to be the best mother and wife I can be while also being chronically ill. When I can’t be, I get anxious. This doesn’t mean I criticize myself or that my husband blames me. No, I know there is nothing I can do when I’m flaring. I try to keep doing my best with what my body is giving me at any moment. My anxiety still goes through the roof when I see dirty dishes in the sink or when my son complains that I’m boring. Though I try to hide it, my husband and those close to me see it without issue. So, I suppose I agree with my husband. On the outside, I may look like I’m comfortable and that I know exactly what I’m doing, but I’m just a hamster. If you look closely, you’ll miss it.
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When we met I was newly diagnosed and spent the better part of my days between hospital beds and my couch. Just a few months prior, my whole world had been turned upside down. I was forced to withdraw from college, forfeit my dream internship, and move home to my parent’s house. Not only was I battling this new illness I had never heard of prior to my diagnosis, I was also grieving. Everything I knew changed and every plan I had for myself was ripped from my finger tips. I began to resign myself to the fact I would never find someone to love me. It was bad enough watching my family get swept into the mad chaos and uncertainty of chronic illness, how could I ever ask someone to willingly step into that mess with me?
But then I found you. If I made a list of every attribute I wished for in a partner, you had them all checked off and more. You were too good to be true. I told you right away how sick I was. I figured it would be easier to watch you go sooner than later, but you stayed. You took my hand, saw the darkness ahead, and said, “Don’t worry, we’re in this together,” and you meant it. You made the drive every weekend to come visit me even if we were confined to my bed watching Netflix all day. When I felt well enough, you planned incredibly thoughtful activities for us to do together. You knew my limits and you never pushed me. Instead you took the weight off my shoulders and said, “Let me help you.” But you didn’t baby me either and when you knew I was strong enough to accomplish something, you cheered me on and encouraged me every step of the way. You made it very clear that you didn’t see my illness: you saw me and my illness just happened to be a part of who I was. You were there through it all — getting a GJ feeding tube, being too weak to leave the house, yo-yoing to each extreme with my weight due to medications and treatments, and having panic attacks in your arms to going back to college to finish my degree, starting my own little business, and finally learning to cope with my new “normal.”
The past three-and-a-half-years have been, for lack of a more clever analogy, a roller coaster. Not only did you hold my hand through the ups and the downs, you acted as the bar that held me in my seat. Without you, who knows where I would be. I think it’s safe to say we both knew going into this it wasn’t going to be easy, but I also think it’s safe to say you couldn’t love me more perfectly. Thank you for loving me and my illness. The unconditional love that pours out of your heart and soul leaves me constantly overwhelmed with the amount of gratitude and respect I have for you. I have never know a human being so undeniably full of all the things that are good in this world. My chronic illness will always be taking me on never-ending loops and pushing me full speed ahead down steep drops, but I know you will always be here. Hand-in-hand. And if you ask me, that’s the best kind of medicine.
When I first began seeking medical help for variety of issues, I began to experience doctors who were very dismissive of me (citing everything from age to weight to existing health issues), would not refer me for evaluation with specialists, refused to order x-rays or ultrasounds to investigate the possible root of my symptoms or prescribed drugs to me without explanation. This frustrating doctor-patient relationship started in my early 20s, and because neither myself nor my parents had any prior realm of knowledge to draw from, I was in the dark about the rights I had as a patient, what types of treatment or dialogue should not be accepted and where I could go to file a complaint against my doctor or their staff.
When you are a generally healthy person who may experience a bout of the flu, stomach virus, sinus infection, urinary tract infection or some other easily curable condition, you are more than likely not going to see your primary care doctor on a regular basis. However, those who have chronic health conditions that require regular and emergency visits, frequent monitoring, periodical reassessments, lab work or testing, you become the patient who your doctor and their staff know by face, voice and name because of their regular interaction with you year-round.
Chronic conditions – especially ones that include pain – can become problematic to deal with, especially from the doctor and their staff’s perspective because it is quite difficult to prove how much pain someone is truly in. Also, most people who have a chronic ailment where pain is involved often become isolated and even depressed because of how their quality of life changes and how hard it is for people to accept an invisible illness. There are even patients who try to abuse or manipulate their doctor and their staff to get prescribed pain medications, dosage changes, etc., which can be indicative of a drug dependency or addiction which is very dangerous and does often occur.
If you do not believe that you fall into the above-mentioned categories and think you are being discriminated against, mistreated or not properly diagnosed, you do have rights as a patient. To file a complaint against your doctor’s staff, you would want to verbally speak with the office manager and follow up in writing by stating the date, time and name of the person you spoke with and what the conversation was about. Then thank them for their time and attention to the matter and carbon copy the actual doctor or physician’s assistant who you are the patient of. If your complaint is about the actual doctor and not their staff, you would want to put your complaint in writing and send via mail or email to your state licensing board. You may even be able to speak with someone over the phone before doing so to see what types of complaints they would consider for investigation.
Nowadays there are websites that allow patients and former patients of a medical practice to rate or grade their experience with their doctor and their staff. You can do other possible future patients a favor by sharing of your experience via an online review. Here is a link to help you get started sharing your patient experience online.
You have the right to fair, equal and unbiased treatment as a patient. You do not have to accept mistreatment because you are fearful of retaliation from your doctor or their staff because you have decided to speak up for yourself and take the appropriate actions to see that an issue of mistreatment is appropriately investigated and stops. To learn more about formal complaints that you can file, visit the American Medical Association’s website.
I encourage you to become an empowered patient who seeks to educate yourself about new information and research in regards to your condition and who strives to ensure that you are being fairly treated as a patient. You deserve to be the best you possible and that includes receiving access to the best medical treatment possible.
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I don’t believe anybody can fully understand what it’s like to be chronically ill until it hits you. I know I sure didn’t. I’ve started to understand now why taking it day by day is so important. If I think about my future it makes me feel very frantic and leaves me distraught, my main thought being, “Am I seriously going to have to put up with this pain the rest of my life?”
Here are some things I miss since becoming chronically ill:
1. I miss being able to watch people either on or off TV and not constantly thinking about how my body would feel if I did the same movements.
2. I miss not having to explain to people why I can’t join in on a particular physical activity, why it’s important to park the car closer or why I have to stop doing certain activities early. Main point: I’m tired of feeling like I constantly have to explain myself.
3. I miss not having to worry about or be scared of weather changes or anticipate knowing how they’ll affect my body for the next few days or more.
4. I miss not having to take so many darn pills and question if they are even doing anything.
5. I miss being able to relate to people easily instead of getting frustrated with those who don’t get what being chronically ill is like.
6. I miss not being able to be diagnosed based on what a doctor can actually see, such as a broken bone on an X-Ray.
7. I miss doctors not questioning how severe my symptoms actually are, not thinking I’m just trying to seek medication or just labeling me with something off the top of their heads to get rid of me instead of actually taking me seriously. Basically, if they can’t see anything they think it must be in my head.
8. I miss having other things to discuss besides my health. I don’t know what else to discuss since it’s such a huge part of my life right now.
I understand that I’m going through the stages of grief right now and I know it will take some time to accept this new obstacle in my life. For now though I will continue to take it day by day.
When you live with a chronic illness it affects your attitude, your outlook, and your mental and emotional health. Some of us wear our ailments outwardly. Some of us have no visible symptoms at all. We may find ourselves feeling insulted or even humiliated from time to time, by how others treat us.
We get earfuls of advice from loved ones, who mean well, but just do not understand what we are going through. We may lose friendships and sometimes even family members. We may leave the workforce temporarily or permanently. We might experience the loss of a marriage or significant other, and we may even lose ourselves.
Through my many years of navigating with my chronic health conditions, without an actual diagnosis, I struggled to continue to lead a normal life. I kept pushing myself to do things that I felt I should be able to do, and the push-back from doing so cost me tremendously every time.
I became very distant from others and eventually was isolated. I felt alone, empty, sad, terrified, frustrated and angry at myself, and at all of the doctors who I had sought out for help to learn what was going on with me. I felt guilty about calling off from work more and more until I was rarely there. I felt guilty because I was no longer able to be a dependable co-worker, employee, friend, minister, wife, mother or daughter.
I did not like the person I was becoming because of my health. I didn’t know who the person looking back at me in the mirror was anymore. Most of the time, I wouldn’t even look at myself in the mirror. Not only did my health change, but my physical appearance changed, too. I struggled as a woman of faith with why I had to suffer so tremendously in a way that was exhaustively and endlessly painful.
Then one day I realized that it wasn’t my fault. It wasn’t my fault that I had experienced a physical trauma in my life that may have triggered some of my chronic health conditions. It wasn’t my fault that I had to call off from work because I was unable to function and do basic things for myself like get out of the bed, stand to take a shower, cook, do laundry, tidy up my place, drive and go to the store. It was simply not my fault.
Once I understood that these chronic undiagnosed health conditions were not my fault, I was able to forgive myself and forgive others for any mistreatment, negative words or conversations. I forgave them for them not knowing what I endured for many many years on a day to day basis because I live with mostly invisible illnesses and had conditioned myself to suffer in silence.
If you can relate to anything that I have said, I want you to take a moment and forgive yourself first and foremost, and then forgive everyone else who does not know what it is like to be you. Whether these people are your relatives, your spouse or partner, your children, you co-workers, church members or doctor and their staff, forgive them. There is no reason for you to live with un-forgiveness in your heart towards yourself or anyone else.
You are a warrior. You have proven time and time again that you can make it through each day that you live. You are incredibly strong, smart, beautiful or handsome, and even though you are going through what you are going through, you have the ability to impact others whom you may come into contact with. If you operate in un-forgiveness the impact you have will be a negative one. But if you operate in forgiveness, you can have an influential and positive impact on others.
Give yourself and others the best gift you can possibly give, which is forgiveness. Now that you’ve done that, continue to strive be the best you can despite the mountains you may have to climb in your life.
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If you’re a spoonie it means you have a chronic illness that probably limits the amount of energy you have each day. You might not be able to do everything you want without crashing later, so saving energy (“spoons”) wherever you can becomes crucial.
Since every spoonie has his or her own tricks and strategies to conserving energy, we asked our Mighty community to share their best “hacks” that help make their lives easier. From getting through a busy work day to saving spoons while showering, this is what real people with chronic illnesses do to manage exhaustion.
Here’s what the community told us:
1. “Shower chairs are an incredible invention. Use them!”
2. “I plan the next day every night before I go to bed with a notebook… what to wear, what to take for lunch, what kind of schedule I have for work, pack any essential items I may need, and etc. It makes the mornings so much easier to have a plan because if I am stressed or anxious it all just gets worse, and if I don’t have a plan and my mind gets all fuzzy then I am just a frantic, confused mess.”
3. “Have stools in the kitchen. Sitting and cooking or washing up is so much easier!”
4. “My slow cooker! I have a family of four to feed so almost every day I slow cook! I put it on in the morning when I still have a few spoons because by 5 p.m. I’m all out of spoons. I also like to precut and have organized foods in the fridge for my boys — that way if I’m not feeling well after I pick them up from school they have food they can just grab.”
5. “If I have four things to do in a day, I only do two, maybe three — that way I feel in control when I stop, rather than letting the pain and/or exhaustion dictate when I stop and make me frustrated.”
6. “I also have baskets under the coffee table with extra meds and things to keep me busy like knitting and coloring when I am stuck on the couch all day. Don’t worry, no kids around to get into the med basket. They’re fabric, nice-looking baskets, too, so people often don’t notice what’s in them. I also do the same for my meds in my closet. A nice pretty basket organized by specific meds so my husband can just grab the whole thing for me instead of rifling around looking for something.”
7. “I order from Amazon on a program called Subscribe and Save. The same time each month I get an automatic shipment of things I buy regularly, like dog food, vitamins, personal care items. This saves me time and money. Leaving the house is always a pain day for me so these shipments keep me from having to go out. It really is very helpful to me.”
8. “The CareZone app has spots to write your symptoms, a medication scanner so you can have all of them in your phone and a calendar to track appointments and it even sends reminders. There’s also an option to get your prescriptions delivered to your door which is nice, but [I] have never tried.”
9. “I suffer from short-term memory problems, or brain fog. When I think of something for later, I often record a video of myself explaining my thoughts. That way, I can reference it later when I struggle to think, ‘What was I supposed to remember?’”
10. “Lots of batch cooking. I spend a day or two whipping up things that are healthy and go in the freezer. Then I can take out something and have multiple meal options with minimal fuss and energy.”
11. “When you tell people you don’t have energy to tackle all your chores at once, they often tell you to break it down by room. Tackle the bathroom one day, the kitchen the next, etc. Well, sometimes I don’t even have energy for that much work. So I break it down by task and order of importance, and then I tackle those one step at a time. If I can only clean the toilets one day and have to put off the other, non-pressing chores, so be it. I’ve come to peace with the fact that my dwelling is never going to be spotless, and that’s perfectly understandable.”
12. “Phone and tablet cases that hold them up without you physically holding them are great. We all know the priorities of still needing to use technology even at our worst.”
13. “I have wellness Wednesday. I take that one day of the week to shut down and rest. I will juice, yoga (if I feel like it), detox bath, and for dinner, I eat super clean. I just allow myself the whole day off. I also use Amazon Prime as much as possible and Kroger ClickList for my grocery shopping. It has been a lifesaver.”
14. “My hack is ‘No.’ I had to learn it for myself, for others, for everything. No, you don’t have to shower today. And it’s OK. No, I can’t cook for ____ work function. No, I can’t direct traffic at school. No. And no with no excuses. ‘I’d like to but no, I can’t. I’m not sure how my body will handle that so I’m going to have to decline.’”
15. “I can’t sit on park benches or stand for long periods of time. So, I keep a camping chair in my car — that way I can take my kids to the park or pool.”
16. “I put together an ER pack for when it’s time to go with all the essentials.”
17. “Fancy leggings and tunic tops I can wear at work and feel comfortable.”
18. “Give yourself the same love and compassion you would give someone you love or even your childhood self dealing with this.”
19. “Something I’ve been doing lately is rolling around on my office chair. When I’m too sick to stand I can vacuum, clean, change room or do many things in my makeshift wheelchair.”
20. “Become very deliberate about grocery shopping, meal planning, and cooking/food prep… When I shop, I meal-plan three to four meals during a shopping trip, then I write a rough schedule for meals for the week so I can have things pulled out of the freezer if need be, and I don’t have to think too hard/process things when I’m not feeling well.”
21. “Have Poptarts and Gatorade by the bed for those days your body can’t fathom getting up.”
22. “If you suffer from sensory overloads (autism, fibromyalgia, etc.) or chronic migraines/headaches, wear sunglasses inside so you don’t have to be in a pitch black room. (Though, if it’s not enough and need to be in a pitch black room, do so and ignore this advice).”
23. “Asking for help. Sometimes its so hard to do, but my friends and family have been amazing to me. I have been carried, pushed around in my wheelchair, helped to eat, drink, change my clothes, wash my hair. They have even helped me care for my children. My support network is my everything.”
What spoonie “hacks” make your life easier? Share in the comments below.