It has been a few years since my original diagnoses and in this time I’ve learned quite a lot about what it means to have a chronic illness. I also have a considerable amount left to discover. After landing myself in the hospital for a while for multiple pulmonary embolisms, I quickly strived to find my new normal. I needed to know what to expect from each passing day.
After months of “Oh! I feel great! This must be my new normal!” to dealing with my severe lupus issues, I’ve discovered I will most likely never have any type of “normal.” This depressed me and caused me quite a bit of anxiety for at least a year. I was afraid to make plans because I wasn’t sure what my normal would be the following week. Would I be up for an hour at the gym or would I be fighting my chronic fatigue and light sensitivity? I will never know. For example: on New Year’s Eve I was hoping to do some type of exercise every day of 2017. I was beyond excited as my normal had been moderately OK for about three months. I had the flu a few times, but no serious problems. To my surprise, I woke up on the first with an awful feeling. I went to my doctor only to realize I had multiple infections, serious concerns from my doctor and as of today, the 11th, I can barely get myself out of bed. My chronic fatigue strikes again, leaving me exhausted even after more than nine hours of sleep. This was in no way my normal New Year, but I’ve accepted it as my current normal and I’m doing my very best to be a parent, wife and blogger. I know I’m missing deadlines, and I know I’m not putting as much effort into playing with my son as I did a few weeks ago, but taking it easy is required when your normal isn’t the best.
2. I know that when my medications have a chance to do their job, I will be better. Even if the side effects aren’t fun, I’ll be OK.
3. I know my normal will change again.
4. I’m doing my best.
Even when I feel like my health and life are out of control, I have to bring myself back to reality. This is my normal, and while it’s consistently inconsistent, it’s mine. Knowing this, I make plans but I acknowledge I may not be well enough to make it. I’m flexible with my normal and my family recognizes my changes and bends with them. It’s in no way perfect, but normals don’t have to be steady. Once a person or even a family recognizes that fact, it gets easier to deal with chronic illness, at least in my opinion.
If you have chronic illness, how do you deal with your ever-changing “normal?”
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Many of us with chronic illness lose a hobby. Our realities change. We have new lives with new components to learn, understand and contend with. We have to adjust our way of thinking and adapt to the new “us.”
So how do we deal with the loss of our hobbies and passions? It’s hard to go through a life-changing event, as getting ill is by nature, and then to have our escapes, the things that make us happy, stripped from us at the same time.
Whatever our hobby was, most of us will have similar reactions. We miss it. We might think about it, even when thinking about it only serves to make us sad, and we will probably be a little bit angry at the world. We may dwell, and accept that there is nothing else we can love quite as much.
But then, when we are done wallowing, (and however long it takes, that day does eventually come), we can pick ourselves up, dust ourselves off and carry on. We can find new things to be good at, to be proud of, to love and to fight for.
Maybe it’s art or writing or music or acting or something much more simple, like spending time with family or watching films. We can discover, through our new passion, that we can be passionate about other things.
Do we stop missing what we’ve lost? No. We don’t. But do we accept it and understand that maybe we lost it for a reason – to lead us on the path to this other great thing? Yes, I think we can, because we can see a light, because there is something else to make us smile, and because the world is still turning, we are still breathing and there is still happiness to be had.
To have a disability or to be chronically ill is not easy. It is incredibly hard. There will still be struggles, you will still have days when you want to give up and cry – and some days that is what you will do. But you still have the capacity for happiness. There is still joy, and even if you haven’t found any quite yet, you will, and in the meantime, there are others quite a lot like you to remind you it is there and waiting.
It doesn’t seem that long ago that I wrote tips for keeping cool in the heat; in reality, it’s been over six months! For many of us, the winter weather has set in, and we are now dealing with the cold. Those of us who are chronically ill often have a difficult time regulating our body temperature. Because of that, it’s important we learn how our bodies react to the heat and the cold. Figuring out what works can make a big difference in our comfort and, at times, our health.
1. Keep a pair of socks near you at all times. Better yet, keep some in every room. Because I have a hard time regulating my body temperature (thanks, dysautonomia!), I tend to get extremely cold feet. But, in a matter of minutes, my feet will get hot, so off come the socks. I repeat this “exercise” several times a day. As you might guess, this is a recipe for missing socks. So, I solved the problem by keeping socks in the end table drawer in the family room, in my nightstand and in the bathroom. Fuzzy socks are the best, except when they’re not. Because my feet get so hot, I always have some regular footies available too. I know, I’m so high maintenance.
2.Use a heated mattress pad or blanket. It’s no secret to my close friends and family that I’m in love with our heated mattress pad. We had one for our queen-sized bed, and when we recently purchased a king, I bought one for it – that’s how much I love it. There’s nothing like climbing into a warm, preheated bed. Those who have muscle and joint pain with their chronic illness usually find heat therapeutic. We’ve had an electric blanket in the past, but I much prefer the heated mattress pad; everyone is different though, and many people prefer one over the other. Regardless of your preference, do some research before you buy. Both types usually come with dual controls for larger beds and some have a preheat setting and/or an automatic shutoff after so many hours. While I’m mostly happy with our new heated mattress pad, it’s not as good of quality as our previous one. The pad doesn’t want to stay on the bed (the elastic isn’t that good) and the controls seem to be cheaply made. Lesson learned: I will research a bit more before I buy another one.
3.Use throw blankets. Throws are a must for keeping warm in the winter. We have one each on our sofa and love seat; plus, I have a basket full nearby. Besides providing warmth, they also add some color and texture to the decor of your room. Throws are useful in the bedroom too. At times, I love to wrap mine up around my shoulders and neck. They’re also good to cover up with if you just want to relax on your bed and not get under the blankets. You may also like to have an electric throw. Mine quit working and I haven’t replaced it, but I love them so much that I really like to give them as gifts. For Christmas, I gave one to our oldest daughter and one to my cousin.
4. Dress for the outdoors. Depending on where you live, that could include gloves, a hat and scarf and boots. I have to admit something: I haven’t always been very good about wearing gloves. I know the importance of them and I did teach my children to wear them, but until recently, I just went without them most of the time. What changed? Raynaud’s, that’s what changed! If you aren’t familiar with Raynaud’s, here’s a definition from Mayo Clinic:
Raynaud’s (ray-NOHZ) disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud’s disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas (vasospasm).
Raynaud’s can be very painful. It’s important to protect your skin from the cold, and not just outside, but when reaching into a freezer or coming in contact with cold temperatures in other ways. I no longer go without gloves. I have several pairs in my car, my purse and in the house. In addition to your hands, protect your head. It turns out mom was right, wearing a hat is important. A lot of body heat escapes through your head, so covering it up can help keep your whole body warm. Sometimes the hood from your coat isn’t very good, so buying a well-fitting, warm hat is necessary. A good scarf can keep your neck and face warm and can be a good protector from the wind. Invest in a good pair of boots. Raynaud’s affects my feet too, so I have some well-insulated, waterproof, comfortable winter boots. Of course, I have several pairs of stylish boots to wear out on the town, but they aren’t nearly as warm and comfortable as my winter boots.
5. Dress in layers. Layering your clothing really does keep you warmer, both indoors and out. If you are going to be outdoors for an extended period of time, you may want to research the ins and outs of layering. A simplistic explanation is to make sure your outer layer is waterproof, and your inner layers wick moisture away from your body. Layering for indoors is really a matter of what’s comfortable for you. I usually wear a T-shirt with a button-down flannel shirt. If I get overheated, it’s easy to roll up the sleeves on the flannel shirt or just take it off. I have long underwear that I have worn indoors on occasion, but generally I save it for those rare times I will be outdoors for a while.
6. Keep your home warm. No one wants to pay an exorbitant amount of money to heat their home, especially those of us who need their homes to be warmer for health reasons, so it’s important you do everything you can to weatherize your house. Many utility companies will come to your home and do a free energy audit. This will show you areas that are losing heat. Sometimes, a solution to energy leaks is easy; other times, it’s a bit more complicated and expensive and may include insulation and replacing a heating unit. Simple things you can do include purchasing insulated drapes, weather stripping and caulking around windows. A programmable thermostat is a good way to save money on your heating as you can set it to a lower temperature when you’re away or at night. A half hour or so before you get home or wake up, it can be set to go up a few degrees.
7.Spend more time in your kitchen. Unlike the summer, this is the time of the year when you want to heat up your kitchen. Baking, as you probably know, can definitely heat your house. So, break out your cookbooks and research some recipes on Pinterest. While you’re looking for things to make, find some soup recipes. Soup and hot drinks can really warm you up. Besides the kitchen, using your dryer can also heat your home. So, you may want to time your laundry tasks for those times when your home is the coolest.
8. Prepare your vehicle. Keep extra clothing, a blanket, first aid kit, jumper cables and a phone charger in your car. Also, it’s good to have some water bottles and snacks just in case you get stranded. It’s not likely, but why not be prepared, just in case? Make sure your car is serviced before the colder weather hits so it’s safe and runs efficiently. If you plan on traveling, consider buying an electric throw for the car; it plugs into the 12-volt outlet just like a cell phone charger. This comes in handy when you’re always cold and others in the vehicle aren’t. If you aren’t lucky enough to have a remote starter, warm your car up a bit before you get in.
Some chronically ill persons aren’t bothered by the cold. You may be more affected by the heat. In that case, you might want to review my tips for keeping cool in the heat.
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Living with chronic illness is hard. Though perhaps living alongside someone with chronic illness is even harder. For the ones who knew me before chronic illness, it’s probably near impossible. So, there are some things I want you to know that, hopefully, will make it a little easier for all of us. The first thing to know? I was sure it would be easier for me to write all of this down once rather than explain it every time I need to. So here goes:
1. The days I seem fine are the days I most need you to remember I’m not.
Something hurts pretty much all of the time. Usually two or three of my symptoms are present at any given moment and I’m very used to that. Just because I’m not talking about it doesn’t mean I stopped feeling it.When I do mention it, it’s probably because it’s gotten way worse than the “normal” level of that symptom I’m used to feeling. On the days when I seem fine, it’s only because I haven’t said otherwise. I need you to watch me smiling through a conversation and look deep enough to notice the parts of my body I’m trying to ignore. I promise if you practice, you’ll get really good at noticing. I always tuck my hand under my hair to put a finger on my ear when the ringing gets loud and the stabbing pain comes back. I shuffle my feet under the table when I’m fighting vertigo. I stop making eye contact when my body forgets how to regulate temperature and a wave of heat hits my face. I start leaning on things and wiggling my fingers when, mid-conversation, my heart lets me know I’ve been standing too long. And I slouch and scroll through my phone mindlessly not to be rude or disconnected, but to distract myself in the moments when five or six or ten symptoms decide to come all at once. I am always feeling something, even if it’s not at all visible.
If I let you know every time one of my symptoms was bothering me, we wouldn’t have time to talk about anything else. So I usually won’t say anything about what I’m feeling unless you ask. And a lot of the time, I want you to ask. If I start the conversation, I feel like I’m being a burden. If you start the conversation, you have already let me know I’m not.
3. I need you to try to understand what I feel, but also understand that you never fully will.
Believe me, I know it is impossible to understand how something feels if you’ve never felt it before. It’s also impossible to understand how something feels for someone else even if you have felt it before. But it is not impossible to be aware of and appreciate what it might feel like. Please don’t tell me you know how I feel, even if you truly believe you do. Ask me what you can do to better understand what I go through. Tell me you don’t know what to do or say, and you’ve just said the right thing. Slowly, I will help you understand, but I can’t if you already think you do.
4. I only need one thing from you, but it’s a big thing: empathy.
Sometimes I wish I could give you all of my symptoms for a day, because that would be the only way for you to be truly and deeply empathetic in the way I need you to be. But empathy can also be learned by listening to me, seeing me and living alongside me. Get online and read about dysautonomia or Ehlers-Danlos syndrome or mast cell activation disorder or Meniere’s disease and then tell me that you did, and you will automatically be on my list of the most empathetic friends and family I have. Be an observer and a good study. Remember what I’ve told you here, take note of all the little things each day that you might not have noticed before reading this, and then remember them. Become as good at catching onto my symptoms or bad days as I am at hiding them, and I promise I will notice and greatly appreciate your efforts.
Most of you will never reach a place where you can be truly empathetic toward me. And that’s OK. But the best way to try is to be aware of how the smallest things you say and do can either have an incredibly positive or unbelievably negative impact on me. Put an extra few seconds of thought into the things you say around me. Especially the things you might want to complain about around me. I want you to be honest and unashamed about expressing what you’re feeling with me. I don’t want you to feel like you have to walk on eggshells around me. But, be mindful.
Realize that though I too try to practice empathy, it is sometimes difficult for me to hear you complain, since one comment about how tired you are or how your back hurts may feel to me like you’ve forgotten about or minimized something I feel and keep quiet about every day. If, in the moment, you feel like you can manage without saying it, then don’t say it. Or, at least acknowledge my experiences too. I want to be able to relate and empathize, but I will shy away from bringing up my own struggles for fear of overshadowing you (see #2 above!). Help me make a mutually safe space for sharing without competing or comparing.
Empathy isn’t always about actions and the right words. More often than not, it’s about deliberate inaction and no need for words. It’s mostly about knowing what not to say and realizing that sometimes, the best thing you can do for me is to sit silently beside me in the moments when I’m hurting. I know you will never truly understand everything I feel. But you will hopefully always be learning. And the more you learn about how to be there for me, the more I will let you be there for me.
5. If you read this whole thing, you’re already much further along than most! Thank you for that.
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This month marks my second year out of employment due to illness, and I must admit it has made me reflective upon what could have been. Life has not been without its hurdles, some thrown cruelly my way though unrelated to my own personal health. But that is not what I wish to focus on. Although it seems a little PMA (positive mental attitude – something I usually have trouble maintaining as a staunch realist), these are the things I have learned.
1. Find a good doctor – and keep them. When I first met my current GP we didn’t seem to “click” and argued over many things (more on this later). I decided I no longer wished to see the doctor in question and requested an appointment with anyone but him. At the desk, the practice healthcare assistant picked up that I was unhappy and said she would speak to him. I reluctantly made an appointment for the next week with said GP, aired my concerns and was met with nothing but kindness and compassion from him. I can honestly say that since that day we have had a mutual respect and an excellent patient-doctor relationship. I truly believe our initial differences have made our understanding of each other better than they ever could have been. All this is owed to the healthcare assistant who went above and beyond.
2. I am no longer afraid to speak my mind. As I said above, had I been afraid to speak my mind, I would have never ended up with such a good patient-doctor relationship. This also applies to other aspects of my life. Having the realization that I am physically unable to please everyone 100 percent of the time and gaining the confidence to speak out when I feel that something is unjust are things I would have never have dreamed of prior to my illness.
3. I know exactly who I am as a person. Having spent many days alone with time to reflect upon life, the universe and everything, I have come to know my own brain very well. I have flaws, but that’s OK. I have come to terms that sometimes I can be irrational, moody and generally unpleasant to be around. I also know that the love I have in my heart is bottomless, my views of the world are uninfluenced by others and I am strong.
4. I have learned to accept help. As many of us know, physical illnesses can go hand-in-hand with mental illnesses. It has taken me a long time to accept that this is not something I have to deal with on my own (see point #1!). It does not make me weak or less of a person.
5. When you get your meds right it is like a gift from heaven. Alongside my practitioner, I have finally found the right combination of medication to enable me to live a more fulfilling life. The road getting there was not easy, and this may not be my combination forever, but the times I wake up in the morning feeling normal feel so much sweeter than the days when I took them for granted.
6. I know what I want to achieve from life. Having a break from the working world, I have been able to reassess my career choices. I have recently completed a course in a field I would absolutely never have even considered prior to my contact with the world of healthcare. I will not go on to earn the salary of a city banker, nor do I wish to. Happiness is the most important thing to me, and having the time to consider what I really want to achieve has proven priceless.
7. I am closer to my friends and family than I have ever been. As soon as I became unwell and lacked the “party girl” demeanor I once had, many friends somewhat fell to the wayside. At the time this was upsetting, however, I have come to the realization that the friends who remained (even just on the end of the phone) are the real gems. I have been incredibly lucky to have such a supportive family network and partner. The things they have done for me and the love they have shown me can never be repaid.
8. It has made me and my partner almost unbreakable. Life can be cruel – it can take and take with no remorse. The things my partner and I have been through have enabled us to cope with almost anything thrown at us. I don’t wear make-up as often as I used to and my hair can be a mess, but he still comes home every night and looks at me like I am the most beautiful woman in the world. Bearing in mind that we were only four months into our relationship when I had to quit work, I’d like to think that it’s a sign of good things coming.
9. I know I have been incredibly lucky. I fully appreciate the time and effort others have put into my care. I have witnessed the kindness and goodness of others first-hand. It has given me hope, and I am currently applying for part-time employment. We all need to spread a little love and happiness – you never know the difference it may make in someone else’s day.
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My blog may be the only place where I refrain from talking about politics, which my friends and family can vouch for since most of them are very close to unfriending me on Facebook due to my seemingly never-ending posts about the current political happenings.
So the reason I’m writing about politics on my blog now is because it’s all about my health, and my health right now is being effected by politics — both in the most immediate sense of how stressed I am and the toll it has taken on my body (physical therapy the day after the election was rough to put it mildly) and the more theoretical looming idea of the possibility of the Affordable Care Act being repealed.
There are so many ways I have benefited from the ACA. Quite honestly, it’s the reason I currently have health insurance and, as an extension of that, healthcare.
First off, my parents are self-employed, so we purchased our health insurance off the exchange. And this year, I’ll have my own exchange plan, so I’ll have one in Pennsylvania.
Next, due to a combination of health reasons and the fact I was ahead credit-wise this semester, I chose to go to school part-time. Prior to the ACA, I would’ve been kicked off my parents’ insurance due to being a part-time student, leaving me in a Catch-22 situation. I was too sick to work or go to school, so I couldn’t get insurance. And not having insurance would mean I couldn’t get the healthcare I needed to get healthy enough to go to school or work to qualify for insurance.
Another big issue for me is pre-existing conditions. If I lost my health insurance before the ACA and didn’t get new coverage within 90 days, I would basically never be able to get my insurance company to pay for anything related to an already established diagnosis again. Basically, I could pay for insurance, but they would only cover preventive care for me.
Many people have told me to wait to see what Donald Trump actually does as president before worrying or getting upset. Here’s the thing, though: To be able to say and do that is a privilege. And to not be worried is a privilege I believe that minorities, the LGBT community and chronically ill people in this country currently don’t have.