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6 Steps to Achieving Your Goals With Chronic Illness


If you have a long-term health issue, it can take years to get diagnosed. You may feel depressed when the doctor cheerfully says, “Good news, the tests are all negative.” “Yes, right, great news, there is no sign in my body that I am as ill as I feel,” you think.

Then one day, at what feels like just another appointment, the doctor says, “We’ve found something,” and you discover what has been plaguing your life for months (possibly years) has a name. There is this weird moment of joy – “I’m not imagining it and making it up” – and then grief – “Damn, there really is something wrong.” It can be hard to take in everything the doctor says, so by the time you get home you are already Googling what the illness means, misreading the help group pages and worrying about the side effects of the medications.

 

Within a few weeks, it’s rolling off your tongue as you tell people what they’ve found and how you are coping. And within months it’s become second nature. It becomes, well, part of you. However, should it define you?

I often meet clients who want to work with me because they are looking to achieve more and build their confidence, and yet a long-term health condition has been getting in the way. I think because I use digital media to showcase how I can handle lupus, two other autoimmune diseases and a plethora of other fun stuff and still achieve success no matter what state my body is in, people want to learn more.

So, should your illness define you? In my opinion, our illnesses are an opportunity to refine us. Here are my top tips to getting what you want out of life when you feel like your illness is defining you (and not the other way around!).

1. One Step Ahead

While others ignore their bodies with the assumption it will always be there and it will always work, you’ve probably learned (the hard way!) that your body needs respecting. So while others work 24/7 to get what they want, you are going to need to be a bit sensitive about it. And to be honest, so should everyone else – they’ve just not had the hard health lessons you have. It’s not about working harder, it’s about working smarter.

As I speak about in my book on fear, in one of the chapters I look at the fear to take time out, the smartest thing I ever did was to learn to outsource, automate and employ. A general idea to consider is if it is something you do regularly and find yourself not really thinking about it, then it’s likely elements of it will be able to be automated, outsourced or given to someone else to do. There are tons of smart apps and tech that can take some of the hard work out of daily life.

2. Plan

While everyone should plan what they want to achieve because you are far more likely to achieve it that way, not everyone does. And while some are still able to achieve, if you have long-term health problems then planning what you want to achieve helps you get there faster. It’s not just about planning work goals; plan social ones as well as health ones. However, never have more than five actions to do at any one time.

3. Be Realistic

I’m all for thinking big and achieving our big ambitions. However, in my experience, people tend to overstretch themselves and attempt to achieve too much, or like a pendulum swinging so far the other way, they create tiny goals you could achieve before breakfast. Be realistic with your goals. They need to challenge and stimulate you. Not demotivate you and make you feel like giving up. Structure in rest time and things that protect your health.

4. Diary It

On top of planning your actions and being realistic, you need some form of a diary so you appreciate time. Learn to appreciate how much rest you need after a busy day. If you need a whole day, schedule it. If you know you can’t work at all, don’t. The “I will just do this” approach will always backfire, because time slips away and before you know it you need to be on family mode or cooking an evening meal and not had the rest you needed. Your rest is as important as anything else when it comes to success with a long-term health issue. And remember no one need know you are not out taking over the world. If you were with a customer or in a meeting, you wouldn’t answer your phone, so treat your rest time with the same level of respect.

5. Sort the Stress

As someone with a long-term health issue, stress can hit you harder and faster. Learn how to manage your stress levels. Learn to recognize how you breathe – from your chest or your stomach? Deeply or shallowly? How do you speak? Are you feeling it in your voice? Does your throat feel closed? How does your back feel and/or shoulders? Are you carrying your stress around in tired and achey muscles? Our bodies hold onto negativity and bad days and it can build into a real issue. Introduce yoga, mediation or mindfulness to your life. Not for you? Explore classical music, get outdoors, stroke a pet, indulge in art or reading. Whatever you do, listen to your body’s ability to deal with stress. Long-term success will need it.

6. Accountability

The hardest thing I personally feel for someone with big goals and a long-term health issue is keeping yourself accountable. Not to get things done, but to slow down. I’ve learned that in actual fact because in order to do the above, the most important thing I need to do is have faith I’m getting to where I want to go. Keeping me accountable are the right people who won’t encourage me to overwork or attend too many events but also won’t say, “Leave it, it doesn’t matter.” They are the ones who accept I have goals and want to achieve them and I just need someone to keep me accountable to the things I’ve said above.

black and white photo of two friends smiling

Of all the things I could say to someone with long-term goals, the last thing I would say is be nice to yourself. My Dad’s favorite saying is “Mandie, if you were well you’d be dangerous” because he knows what I used to achieve before I got ill. This used to really annoy me; however, I’ve learned to reframe the negativity out of that statement and turn it into a positive. No matter what, my Dad (like so many others) sees my true potential, and on a tough day when I am in agony, feeling exhausted and like giving up, that is a priceless statement to hold on to.

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Why It's So Important for Us to Talk About Chronic Illness


If you’re anything like me, early on in your diagnosis (along with the many other emotions going on) you felt a sense of fear and shame when thinking about discussing your new illness with others. I justified not talking about it by telling myself that my lupus didn’t define me and I didn’t want people’s pity, or to be judged and perceived as “weak.” The truth was really more along the lines of – I didn’t want to talk about it because talking about it made it real; if I could fake being healthy to those around me, then maybe this wasn’t as serious as my doctors were making it out to be. Regardless of the reasoning, I have learned there is such value in educating people on the realities of chronic illness and sharing your story.

At some point after getting sick, I would venture to guess that everyone living with a chronic illness has felt alone and isolated from those around them. For me, I was 20 years old and anytime I went to see my specialists I was by far the youngest person sitting in the waiting room. My friends who were my age weren’t dealing with serositis and near constant pain – they were in college, partying and living the life of 20-somethings. My coworkers weren’t having to regularly use their leave to go to doctor appointments and go get lab work done on their lunch breaks.

All of this led me to feel completely alone and like nobody around me could relate to what I was going through. I would stress myself out thinking about what would happen when I didn’t get better. What would happen when I finally did tell people? What would they think? Would they judge me? Would they think I was weak? Would they think I was exaggerating my symptoms? Would my friends push me away because they couldn’t relate to me anymore? Would people stop wanting to work with me because they didn’t think I was up to the challenge anymore?

 

These are the things that would keep me up at night, playing out the worst case scenarios in my head. And unfortunately, in some cases, the answer to those questions was “yes,” but in the overwhelming majority of the time the answer to each of those questions was “no.” As a matter of fact, as I slowly started to open up to the people I was closest to, I was met with an overwhelming bout of love and compassion. I had friends who, when I couldn’t make it out or had to cancel plans, would show up at my house and just sit and watch TV with me while I was curled up on my couch. I had coworkers offer to drive me to appointments if I needed it, and who still regularly call and check on me. I had an overwhelming number of people rally around me; it was the most humbling experience.

Eventually, I got involved with a few online support groups for lupus and fibromyalgia. I would share my story, and was able to see all the people around the world who truly understood what I was feeling and dealing with; suddenly I wasn’t alone anymore. I could share my story and feel completely understood, and I could learn from other people and their experiences.

In these groups, I started to notice that every time I would share what I was going through – specifics about my symptoms, what doctors said about those symptoms, good experiences, bad experiences, etc. – people would reach out and tell me about what they were going through, experiences they have had, symptoms they had experienced, treatments that had worked, and so on. Whether it was to answer a question or offer advice about something I was dealing with or how sharing my story had helped them in one way or another, there were these beautiful patient communities that could lift my spirits and answer questions about what I was experiencing. It was beautiful.

I started occasionally sharing information about lupus and chronic illness on my personal social media pages, and I was surprised at the number of people who would reach out thanking me for sharing the information. They would tell me things like “I have a friend/family member with lupus, but I don’t know much about it” or that they had no idea what lupus was and how it has affected people’s lives. And after a handful of these reactions, I realized how important it is for us (as chronic illness fighters/caretakers and loved ones of those fighting chronic illnesses) to get information out there and educate people on these diseases. There are over five million people around this world with lupus, and there are still people who have no idea what it is (I was one of them!).

And it’s not just lupus – there are so many people struggling every day with chronic illness, and the amount of people who have no idea what some of these diseases are is shameful. Could you imagine if you started talking about cancer and someone told you they didn’t know what that is? This lack of information is where misconceptions come in, where judgment comes in. Within the chronic illness community, there is always talk about the ignorance of some people who are lucky enough to not struggle, or know someone struggling, with a chronic illness. Well, this is one way to help change that…sharing facts about our illnesses and what it’s like to live with them can help change that!

All of that being said, I would be lying if I told you that opening up to people about my health struggles was only filled with love and acceptance. There were people who judged me. There were people who questioned whether I was exaggerating. There were people who offered nothing but their unsolicited (and uneducated) advice and passive-aggressive comments. There were people who distanced themselves from me because I wasn’t the same person I used to be. There were people who were supportive in the beginning, but as time went on and I didn’t get better, got tired of my excuses for not leaving the house and my life not going back to normal.

And even having experienced all of that, I still believe it is so important for those of us living with these diseases to talk about it! When you keep pieces of your life bottled up and hidden from those around you, it puts a wall up and isolates you from those around you. I have never wanted lupus to define me, but – like it or not – it is a part of me and I have a need to talk about it just like I would any other part of my life. Who better to educate than those who are living it? Who better to lean on than others who wake up and face it every day, just like you do?

friends sitting on a bench at the end of a pier

So don’t be afraid to talk about it, because it is so important! Don’t be afraid to share information with someone who knows nothing about it. Don’t be afraid to ask for advice from people who are living it too. Don’t be afraid to let your story inspire and help others. And don’t be afraid to find your tribe, your people who you know you can depend on, and tell them what you are going through. You will be surprised at how much of an impact sharing your journey has.

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To the Woman on the Bus Sitting in a Disability Seat Because She Was 'Tired'


A while ago I was waiting for the bus, and it took a while to get on because this lady wouldn’t get up because she was tired. Luckily some other people from the other mobility spaces got up, but I’m not always going to be that lucky, because I live in a major city where there are plenty of wheelchair users who take the bus, and that space she occupied would be the only one I could take. She, on the way to our destinations, talked loudly about how she was tired and how I should just wait for the next bus. This is my letter to her.

Dear Ma’am,

I know it’s an inconvenience for you that I have to take the bus, but I need to because I cannot drive. At the time I was riding the bus I wasn’t seizure free, and to this day I still don’t know how to drive. It’s an extreme inconvenience to me having to wait for another bus, not knowing if the spaces are taken by wheelchair users or people like you who sit in the disabled spaces but won’t get up. If I can’t be sure I can catch the next bus, I could be in major trouble trying to get home after a busy day or trying to get to the doctor’s office on time. Missing an appointment can be very bad for my health, and could result in a hospital visit.

 

I know you don’t know this but, if seats lift, don’t sit. Those seats are prioritized for people like me who use wheelchairs, scooters or walkers or are disabled. For many of us, it’s a fire hazard and even downright dangerous to make us sit out of those spaces. That’s if we even can get out of the wheelchair in the first place.

I know you are tired. I am too, but please do not take it out on me. I shouldn’t have to wait for another bus if there’s a spot for me on there, just like you shouldn’t have to wait for another bus if there’s a seat on the bus you can sit in.

I have MCTD, and for me my joints hurt. A lot. Sometimes I’m in excruciating pain and have to use a wheelchair, but sometimes I don’t need to use the wheelchair and I prefer not to because it’s a pain to get around sometimes. I often find myself having to find the accessible entrance or the elevator.

I also would like it if you kept your ranting to yourself, because it’s very hurtful for people like me, and adds to the mental strain of being disabled. I’m not disabled by my body, but by society who ignores me to the point where entrances are hidden, or I am a victim of gatekeeping because I don’t fit society’s expectations of what a disabled person looks like, acts like or sounds like.

Sincerely,

A wheelchair user

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When Lupus Makes You Cancel Your Plans


I planned to get a lot done today. I wanted to start prepping my vegetable garden beds for the fall while we had some nice weather today, move the remainder of my potted plants into the house, get some cleaning done around the house, and make some progress on my crochet Christmas presents for people.

Like I said, this is what I had planned for the day – but this is not what the day had planned for me.

As soon as I woke up I knew things were not going to go as I expected. You see, I have had a terrible week… my joints have been more achy than normal, I had a massive migraine after an infusion on Tuesday, I had a few days of my pericarditis along with some palpitations rearing its ugly head, and I’ve just been feeling more run down than normal. Then this morning I woke up feeling exhausted, my joints screaming, and a low-grade fever… all signs of the beginning of a lupus flare.

Rather than getting to everything on my to-do list, I moved the plants inside, took a shower, brushed my teeth, put on a pair of sweats and favorite “flare day” T-shirt and climbed back into bed. I’ve got my computer, my favorite rose water spray, lots of fluids, and Netflix… everything I need to take it easy and rest today.

This is one of the things about lupus that has been very tough for me to come to grips with. You can have as many plans, schedules, and timetables as you want, but when lupus tells you you’re not doing anything today – you’re not doing anything today. And that’s exactly what you need.

I look at lupus as a relapsing, remitting illness, in the sense that you will have days and weeks when you’re able to get things done. You may have some aches, pains and fatigue, but you’ll be able to manage your symptoms – then, out of nowhere, you will relapse by having a flare-up, and your symptoms will knock you on your ass. No matter how much you fight it and push back against it, those bad days are going to come. There’s nothing you can do about it and fighting it only makes it worse. Because of this, you have to learn how to ride the wave. Take advantage of the good days, but be able to let go of plans, expectations, and judgment when those bad days arrive.

Lupus is a disease where your body is, in the simplest terms, attacking itself. When you get the flu, part of the reason for the fatigue you feel (and the reason you are told to rest) is because your antibodies are fighting against the foreign invaders, trying to rid your body of the bad stuff. When you have lupus, those same antibodies and your connective tissue are attacking you, leaving you feeling flu-like symptoms on top of whatever way lupus affects you. So, as you can imagine, with all that going on in your body – you need to rest and recuperate when your body calls for it.

Being able to take each day as it comes and accept your body’s fluctuating limitations is such an important lesson for anyone struggling with lupus, or any type of chronic illness. There will be days where you have to cancel plans. There will days where dirty dishes will have to sit, piled up in the sink. There are times when you’re going to have to use that grocery delivery service, rather than running out to the store. There are times when the most you will be able to do is brush your teeth and move from the bed to the couch.

You have to be willing to let go of what you thought you were going to accomplish that day and remind yourself that these things are not selfish, lazy, or whatever judgment your brain comes up with. This is what is going to get you to those “remission” days quicker. So if, like me, you are in a full blown flare, or your chronic illness has you feeling run down, grab a blanket, put your feet up and bust out the Netflix… this is exactly what you are supposed to be doing today!

Follow this journey on Lovely Lupus Life.

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The Beauty and Agony of Hindsight After Being Diagnosed With Lupus


Though it took me some time to realize, there were certain things I lost in the instant I was diagnosed with lupus. The saying goes that we never know what we have until it’s gone, and for me that couldn’t be truer. There’s a whole other life I would’ve had without lupus, a range of possibilities and opportunities that are now out of my reach. But I never could’ve known how much I once took for granted if I hadn’t lost it all first.

If you had asked me at the beginning of last year what my life would look like now, my reply wouldn’t have resembled anything remotely close to my present reality. Though most of the major parts of my life – my job, the university and my inner circle of friends and family – remain the same, what makes life are the little things, and from then to now, they couldn’t be more different.

 

The girl I was in January 2016 would’ve expected me to be approaching the halfway mark of a primary teaching degree, likely playing netball and working in my little coastal café. What she never could’ve expected was lupus and all the horrible, wonderful and life-altering things it would bring.

There are so many aspects of life I never expected. I never knew I would grow to envy others for the simple ability of waking up easily most mornings. I never dreamed I’d long so desperately to be able to identify myself with a simple word like “healthy,” or that at times I’d feel so old at 21.

What I do know is that there once was a time when I led a life so many – including my present self – dream of having, and I never truly appreciated what I had while I was given the chance.

Hindsight is such a beautiful, yet agonizing thing. I wish I could go back and retrace moments, not to change them, but to appreciate them for how incredibly special they were.

I’d spend all day in the sun at the beach just to once again have the chance to relish in a guilt-free moment I’m no longer allowed to love. I’d go exploring overseas, to know the feeling of easy travel without dietary limits or boundaries. And I’d stay out all day before dancing my way into the wee hours of the morning, with the knowledge that nothing is coming back to bite me as a consequence of celebrating life exactly how I wanted.

But I can’t. My world consists of constantly second-guessing myself on every choice I make, whether it’s what I’m eating, what I’m doing, how much sleep I’m getting or how hard I’m pushing myself. Lupus has taken up a permanent space in the back of my mind, forcing me to question every decision.

I never appreciated how it felt to have every opportunity available to me, or what it was like knowing I had complete control over my life if I wanted it.

Now that I can’t have it, I want it more than ever. I want to be the one to dictate my meals and my sleeping pattern. I want to remember what it’s like to be completely certain of a choice because it wouldn’t have an impact on anything else, and to know that for the most part, my future was in my hands and mine alone.

This post originally appeared in Kristiana Page’s column, “The Girl Who Cried Wolf,” on Lupus News Today.

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Starting Over With Lupus


When I was diagnosed with lupus, I thought my life was over. It had shattered into a million pieces when I found out I tested positive for it. I knew nothing about it, didn’t understand it and therefore, my life was over. I didn’t know anything about it. I just knew it had been making my life miserable for a long time. The fatigue, depression, headaches, aches and pains, chronic rashes and other trials I’d been going through weren’t just me being a hypochondriac. I had a disease, and I was more afraid than I’d ever been in my life.

I had a wonderful doctor who helped me get through it in the earlier stages. And I went online and read everything I could about lupus. This gave me more headaches so I took my medicine and stopped reading. Reading about other people’s challenges with lupus just made me feel more depressed.

At one point, the disease caused my brain to swell and I began having seizures. It was while I was in the hospital that I had a good, long talk with myself. I decided then that I no longer was going to consider myself a “victim” of this terrible diagnosis. I didn’t think of myself as having lupus, and it certainly wasn’t going to have me.

In the year of diagnosis, I had been in and out of the hospital because I’d undergone several operations. I had a hysterectomy, my appendix was taken out, part of my colon was removed, and I had a spinal fusion that was supposed to correct multiple herniated discs in my lower back. The operation didn’t work, and my back only got worse after that. I could no longer work, and my life became an endless barrage of blood tests, doctor appointments, and constant pain.

To say that I’ve been challenged is putting it mildly. My depression became worse because I was angry that I could no longer do the things I loved to do. Going on roller coasters was one of those things. I couldn’t even go shopping anymore because the pain left me breathless and in excruciating agony. It still does. I’ve tried every pain medication and procedure under the sun, and nothing has helped. I was sick and tired of being sick and tired.

I remembered the pep talk I had with myself in the hospital and realized that not being able to go on a roller coaster anymore was not all that important to me. Shopping and going out were to be limited to one day a week.

I’ve lived like this for the past decade. Since then, I’ve struggled with Sjogren’s syndrome as well, among other autoimmune challenges. I’ve had bloody noses that have sent me to the emergency room and had my nose packed every week for almost an entire summer. But I’ve also published 36 books, became an ordained minister, and continue to pursue my education through distant learning and online courses. I love to do crafts, spend time with my niece and nephews, and cuddle with my sweet and adorable cat. My husband takes me out once a week to go shopping, and we eat at one of our favorite restaurants.

It took me a long time to realize that having lupus didn’t mean my life was over. It meant my life was starting over again. I was facing different challenges and I was in a situation I never thought I’d be in, but I’ve learned to see the blessings through the struggles. Had I never stopped working, I might not have pursued my passion for writing. I might never have been in a position where I am now, where I can encourage and support other people who are dealing with illness and pain. Because believe me, your life isn’t over. And I believe it’s true… whatever doesn’t kill you does make you stronger. Sickness doesn’t have to define who you are. You are who you choose to be and you can be and do anything you want.

There are days when I’m in so much pain that I can’t get out of bed. It hurts to even think. When these days come, I let them. It’s because I know there’s tomorrow and it might get better. Some days are just spent sleeping or watching movies. If that’s all I can do on those days, I accept it.

So let me leave you with these words… your illness isn’t who you are. It’s only part of you. Accept yourself, love yourself, and look forward to tomorrow. God bless you all.

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Photo by Ryan Moreno via Unsplash

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