As the new year begins, I dream of better days ahead. While I no longer set New Year’s resolutions I can sort out my feelings and focus my thoughts for the coming year. I’m starting the new year exhausted. Everything I do takes a toll on my body. Everything is so much harder for us lupies to accomplish, making even the simplest tasks a major ordeal requiring rest. The holidays are rough on everyone but for us lupies it’s brutal. Can’t life be a little easier and less hectic?
Unfortunately chronic illnesses are looked down upon. And, disability is a dirty word. I wish people knew how much my life resolves around lupus and its companion illnesses like Sjogrens, hypothyroidism, Reynauds and IBS. I wish that people understood that I share my health issues to educate those around me in hopes they understand my circumstances. I do not educate for pity or sympathy. I am not an attention seeker. I discuss lupus to help others who are dealing with the same maladies. It’s important for me to try to help others with my experience. I share information to educate, to explain in a matter-of-fact fashion in hopes to ease a fellow lupies struggle.
Lupus came without invitation, without forewarning, without my consent. Lupus tortures me day after day, year after year. My livelihood was taken away along with a good portion of my dignity. It robbed me of my social life, took away friends and caused isolation. I’m no longer able to do what I’d like. Instead, lupus dictates my daily life. My capabilities, how I feel, on any given day, lupus is the decision maker. I’m not lazy. I didn’t do anything to cause this condition.
I wish for many things in this new year. I dream of better days. I hope for the best possible outcome in every situation.
I want to go places and have fun. I’m yearning for easy days filled with health, happiness and grace. I want support. I want to be amongst family and friends.
I wish for strength and the ability to care for myself and others. I wish for the independence lupus has stolen from me.
I wish for stability. Lupus wreaks havoc in my life, and sometimes in the lives of those around me.
I wish I could plan for the future without worrying about what unexpected lupus symptoms will bring chaos.
I wish I could feel the freedom I experienced prior to the traveling circus of lupus settling in permanently.
I wish to regain the peace that I once felt.
II wish for a place to escape the pain and worry, a place to find peace.
I wish I could run and play, live my life without the shroud of darkness lupus brings.
I wish lupus didn’t affect every aspect of my life. Lupus affects my mind, body and causes my soul to feel weary.
Lupus has stolen my happy healthy life from me, yet I choose to fight back. Lupus steals my energy. I’ve missed out on family time due to the traveling circus of inflammation. I’m tired of being resilient. I’m tired of fighting. I’m patted on the back for how well I cope and how many times I get up after I’ve been knocked to the ground. Lupies fight every day for health, for some sense of normalcy but mostly for mere survival. There’s no battle cry when we go into battle because it is a daily battle. There’s no grand inspirational speech to build us up before the battle because the fight is never ending. We’ve all had days where we feel we can’t survive another day however we choose to fight! Fight the disease, the stigma of chronic illness and the insensitivity of people.
I choose to find control where I can. I’m forced to make course corrections several times a day. I focus on gratitude for the things I can do. There’s always something good in each day. I choose to surround myself with supportive caring people. I choose to live the best life I can, within the limitations lupus has put upon me.
Lupus has taught me many lessons over the last 30 years. I’ve learned not to take anything for granted. I’ve learned courage and perseverance.
I do not walk this journey alone. God will ALWAYS be there to guide me through even the toughest of times. Never give up. Have faith. Keep hope in your heart. Trust in God or whatever deity guides you. Every day I pray, mostly I pray for grace and mercy.
The holidays bring joy, laughter and traditions but in actuality it increases the probability of a lupus flare. While we practice being vigilant on a daily basis, it is quite a task trying to keep the traveling circus of inflammation under control. Living with lupus means living with uncertainty. Stress is bad for everyone however for lupus sufferers, it lights us up like a Christmas tree! In addition this all takes place during peak cold and flu season which increases the risk of illness that comes with treatments like immunosuppressive therapy including steroids and/or biological treatments. Exhaustion is a mortal enemy too, but for anyone with an already unpredictable autoimmune condition it can be devastating. With the added stress of the holidays, it sets lupies up for the perfect storm that can cause massive destruction. Those consequences I would rather avoid! Management is a necessity! It all begins with self-care.
Plan Ahead is my motto. It’s easy to lose track of time so I schedule my activities even the minor ones. I have a prep day which includes rest and a recovery day for every outing otherwise my energy levels get depleted more quickly than usual then my mental health suffers. Also, we need to manage whatever we can, from how we shop, to where we go, to who gets our time and energy. This is in addition to our regularly scheduled doctor appointments, prescription runs and insurance inquiries.
Here are my top 12 tips and tricks:
1- Be thoughtful of the consequences of your actions by knowing your limitations. As much as we want to be ‘normal’, we are not like everyone else. We need rest periods and to pace out our activities. Personally I try to avoid lengthy store lines so I order items online and use shipping and curbside pick up. Online shopping has helped me tremendously. I avoid the crowds, the item gets delivered to my door or sometimes it can be delivered directly to the gift recipient! It decreases my exposure to germs and saves my energy for socializing with those I love. Plan activities such cooking, decorating and shopping. Ask for help with cleaning, cooking, decorating and anything else that can be outsourced. Family and friends could pitch in to accomplish the many holiday tasks, even simple tasks like gift wrapping helps when my hands are stiff and painful.
2- Be social but not to the point that your health is sacrificed. Pick and choose what you’re up for. It’s ok to say no especially if it’s going to run you ragged. Set boundaries. Be flexible if you’re too tired on Monday move activities to Tuesday.
3- Emotional health is equally important as physical health. Keep an open mind. Put life into perspective and live your life to the best of your ability. Be grateful for the things that you have and can do. Learn to let things go. LET IT GO.. like the song says. Let go of feeling broken, unworthy and any past mistakes. Move forward and promise yourself you will do better and be better next time.
4-Sleep is crucial in maintaining optimal health with a minimum of 7 hours. No electronics 1 hour prior to bedtime. Wind down with relaxation techniques and soothing music. Make time to rest and relax by scheduling rest periods throughout the day including nap time.
5- Nutrition is essential to immune system health sooo Eating healthy is part of maintaining balance. Holiday activities are usually centered around food which creates another challenge since nightshade foods can trigger a flare. I’ve learned through trial and error which foods can trigger a flare so know your triggers Watch your salt and sugar intake, those are major pitfalls Stick to whole fresh foods and avoid processed foods, alcoholic beverages and high sugar/salty treats. Don’t forget hydration! Drink at least 64 oz of water per day. If you’re going to a pot luck, bring foods that you can eat.
6- I believe vitamins are useful. Increase vitamins C and D which are known to boost your immune system. Use supplements as directed and consult your physician. I take 1,000mg of vitamin C and 10,000iu of vitamin D daily and niacin. Remember don’t take echinacea or elderberry since it can cause a Lupus flare.
7- Have faith and practice gratitude. I find that before bedtime and early mornings are peaceful hours to pray and/or use meditation techniques. We still have so much to be thankful for.
8- Cold and flu season is upon us so frequent hand washing is a must! Use warm water and soap to thoroughly wash between fingers and entire hand. When you don’t have access to soap and water, use hand sanitizer gel. I keep a small bottle attached to my purse and one in my coat pocket.
9- Comfortable clothing is essential. Choose breathable fabrics like cotton. Hormones and fluctuating body temperatures are unpredictable and uncomfortable. Wear layers so when you’re cold you can add a sweater or if your too hot you can remove it. Itchy or improperly fitting clothing makes me irritable and uncomfortable.
10- Be useful. Help one another, a friend or neighbor. IF you’re feeling lost and alone, volunteer. Personally if I can find a way to help others it gives me purpose and takes away my loss of control.
11 – The end of the year is time to inventory medications. So evaluate prescriptions and supplements then refill anything running low. This time of year can pose new challenges trying to reach physicians and office staff. Just a reminder that pharmacies and health care providers have shortened hours due to the holidays.
12 – Fixed incomes bring many challenges but especially around the holidays. Just remember to balance monthly expenses with out-of-pocket medical expenses and additional holiday costs like presents and specialty food purchases. A fixed income tends to cause me to rack up extra credit card charges that leave me stressed when the bill comes due in January. Consider adding some homemade items in place of pricey store bought gifts. Personally, I always make homemade cookies but those cost me time and energy and money to purchase ingredients.
Each and every day is a gift. Let’s make the most of what we have and enjoy our loved ones during this blessed season.
Wishing everyone a healthy and happy holiday season🌲
Be thoughtful of the consequences of your actions🥂
I refuse let lupus win. I choose to live my life to the best of my ability. There are good days and bad days but I choose to focus on the good things. I have learned to find happiness in small pleasures that life offers and embrace the present with gratitude. I am grateful for so much; love, laughter, kindness and life. Everything I am and everything I have is a gift to embrace, a blessing. I have a loving family and a few genuine friendships that have lasted over time. They love me for who I am even though I can’t function on every one else’s level. My body is not healthy but I can a take care of myself and perhaps, on good days, I can help someone else.
While at my church meeting, the group of older ladies were all complaining about their aches and pains and life’s challenges. One of the ladies didn’t complain at all. When she broke away from the group I followed her. I asked her, “what’s your secret that you never complain?” She quietly replied, “when you serve others you forget about your own problems and worries. When I’m busy I don’t think about anything except doing and that makes me happy.” Then she added, “Worrying and complaining don’t solve anything.” Then she took my hand and said, “God made our hearts and hands for service.” That day I decided to change my perspective from stressed to blessed. It was time to stop complaining and live.
That’s when it all changed. I no longer have pity parties for one. I’m not as angry or unhappy. I no longer postpone my happiness, waiting and hoping that someday, when things get better I will do this or that. I will be thankful for what I have right now. I have a place to call home. I have food to eat. I have clothes to wear and heat in the winter. And I can help someone with something! I don’t have the energy to move mountains but I can serve others. Whether it’s a phone call of support to a friend or just being a good listener or even a sincere compliment to a stranger. I can cook a pot of soup to bring to a sick neighbor or cupcakes for the little girls next door. Those little things won’t solve the world’s problems but they can make a difference in someone’s day.
I’ve stopped waiting for the weekend, waiting for things to get better and trying to putt off living until tomorrow when things get better. One of my favorite quotes is, “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” There are too many days that my body does not cooperate and I’m feeling useless. On those days, I try a little harder to find the good in life. But every day, I choose living because each day is a gift and precious. I’ve learned to appreciate the simple pleasures in life, to live in the moment and be present. I’ll keep trying. I won’t give up and I won’t give in. No matter what, I am a survivor!
I use a few quotes for my daily inspiration:
“I will bless you,” God says to Abraham, “and you will be a blessing. . . . and all peoples on earth will be blessed through you” ~ Genesis 12:2
“If we think only of ourselves, forget about other people, then our minds occupy very small area. Inside that small area, even tiny problem appears very big. But the moment you develop a sense of concern for others, you realize that, just like ourselves, they also want happiness; they also want satisfaction. When you have this sense of concern, your mind automatically widens. At this point, your own problems, even big problems, will not be so significant. The result? Big increase in peace of mind. So, if you think only of yourself, only your own happiness, the result is actually less happiness. You get more anxiety, more fear.” ~ Dalai Lama
“Hope is being able to see that there is light despite all of the darkness.” ~ Desmond Tutu
“If the only prayer you ever say in your life is ‘thank you,’ that would suffice.” ~ Meister Eckhart
“Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so, let us all be thankful.” ~ Buddha
“Being relaxed, at peace with yourself, confident, emotionally neutral loose, and free-floating – these are the keys to successful performance in almost everything.” ~ Wayne W. Dyer
“The best way to cheer yourself is to try to cheer someone else up.” ~ Mark Twain
“As we express our gratitude, we must never forget that the highest appreciation is not to utter words but to live by them.” ~ John F. Kennedy
“I have noticed that the Universe loves gratitude. The more grateful you are, the more goodies you get.” ~ Louise Hay
Hope I helped you see life from a different perspective. Remember these five simple rules to be happy:
BAD LUCK or misfortune is an unfortunate state resulting in unfavorable outcomes.
KARMA is about a person’s belief in you reap what you sow or what goes around comes around.
FATE is God’s plan or “written in the stars”.
HEREDITARY means conditions passed down through genetic code.
How often do you say “what did I do to deserve this?” I say it way too often! I have lupus and some days I feel cursed. I know that I’m a good person. I don’t believe I’ve been cursed nor have I wronged anyone to deserve these trials and tribulations. I know I don’t deserve to have my body fail me day after day when I go out of my way to care for and help others. Maybe I was a horrible person in a previous life and it’s coming back, in this current life, to take a bite out of my butt? Quite possibly it’s hereditary and I’m destined to live my mother’s life. I don’t have an official familial history of autoimmune disorders however my mother had multiple ailments including fatigue, joint swelling and kidney failure. When I first got diagnosed with Lupus, over 25 years ago, I felt relieved to finally have answers. It only took approximately 8 years of testing, 5 different doctors and many many years of persistence knowing “something” was wrong.
Initially, I felt blessed but now my condition has progressed and that feeling has faded to tolerance and perseverance. Lupus warriors, know what I mean. I’m on 16 different medications to treat my Lupus and overlapping accompanying ailments. I’ve tried to educate family and those people around me so they understand a little bit about my condition but it’s difficult for people to understand that I’m experiencing health difficulties when I look normal or ok. It’s not like breaking an arm and having a cast or walking with a cane where everyone can see the disability. No one truly understands unless they have walked in your shoes. A wise friend told me one day you will tell your story of how you overcame everything you went through and it will be someone else’s survival guide.
And there is was… there was my reason for enduring. I’ve survived to show my niece how to live life with lupus. My 36 year old niece has now received a diagnosis of autoimmune disease and quite possibly it is lupus. Tests are still pending so that part has not been diagnosed… yet! She called me in elation, that she finally got a diagnosis. Her latest exams confirmed positive for autoimmune after a year of run around and the inescapable answer of “we don’t know” or those “symptoms are too non specific to diagnose”, essentially saying you’re crazy. While she was thrilled to have a label she asked me to walk her through the then what scenarios. I explained, it’s all about treatment options and limitations. I talked her through treatment options like plaquenil, steroids, and methotrexate. Lupus fatigue is debilitating and learning limits and pacing yourself to help combat that fatigue is essential to survival. And how I even hesitate to join in on activities because I never know how I’ll feel from one hour to the next. She understood that and has witnessed it. But there’s always the underlying questions of how will it improve and why is this happening?
After our three hour chat, she finally understood that her very strange symptoms that she’s been having had a name and unfortunately the diagnosis isn’t as temporary as she initially thought. I explained to her to embrace this “new you” and explore that deep seeded need to find answers and what treatments are best suited for her body. I explained stress management and the need for self care. Unfortunately, it became extremely evident that this will never be over nor is there a cure. That is difficult for anyone to accept. I emphasized my mantra; Love me for the things I can do. But don’t hate me for the things I can’t.
When our call ended, I sat down and cried. I had hoped that my lupus diagnosis was a fluke since my mother was not formally diagnosed with lupus. I prayed that this crippling condition would not to be passed on through generations by genetics. While I was happy that my niece will receive proper medical treatment, my heart ached knowing the life that lies ahead for her will be unpredictable and complicated. This illness that has cursed me for the last 25 years has now been passed to another generation. That thought is so devastating that I just cannot find the words. I can only hope and pray that in the near future the medical community finds a cure. Until now, no one considered the serious sequel of heredity. Once again the world, my world has turned upside down. And now I worry about my precious newborn granddaughter getting this horrible illness. I’m heartbroken. Statistics from the Lupus Foundation of America show, 20% of people who have lupus, a parent or sibling already has lupus or develops it later. About 5% of children born to a parent with lupus will develop the disease. That Includes putting them at increased risk for adjacent autoimmune diseases like sjogrens, reynauds and hypothyroidism, all of which I’m afflicted with.
My mother taught me that believing in GOD and his plan is always the answer. Perspective makes me look for the life lesson or some sort of blessing in disguise. I am here to show my niece how to be a survivor, a warrior. I have endured in order to teach her how to cope and be her support system. I can help her learn that our experiences make us who we are. No one has a perfect life. No one chooses to have a chronic illness. In the end, it is up to us how we choose to deal with what life brings our way. Everyone has experienced failure and disappointment. Mistakes are part of the learning process. It’s how we deal with what we have that makes a difference in living a happy life. Becoming emotionally strong enough to let go of failure and learning from our mistakes is a part of our life journey. Personally, I focus on what I can do. No sense in wallowing in the I can’t, or the past. When my mind says go but my body says no, I must adjust accordingly to survive. I have good days, bad days and sometimes a mixture all in one day. We can learn to become stronger from our challenges.
While I’ve been through hell, invisible forces, angels, divine intervention, whatever you want to call it, seem to have guided me through. Sometimes blessings don’t come in the way we think they will, sometimes they come in disguise. I know a lot of people feel the same as I do regarding life’s tragedies and traumas. I have found there are lsilver linings in the dark clouds. In Romans 8:28, “And, we know that all things work together for good to them that love God, to them who are the called according to HIS purpose.
I feel that fatigue is one of the worst symptoms of lupus. My best description is that it feels like walking around wrapped in a weighted blanket. Everything takes extra effort. Even the easiest of tasks become difficult. Unpredictable fevers are a close second. The fatigue and joint pain associated with lupus can make life debilitating It makes it more difficult than a normal person’s life to do simple tasks or care for your family. I’ve had to miss out on activities and ask for help on a regular basis, not just when my symptoms flare. The traveling circus of inflammation has interrupted many plans and I’ve had to cut back on activities that normal healthy people take for granted. People that are healthy rarely understand the struggle us lupie warriors face.
Ninety percent of people with lupus experience some degree of fatigue. In most cases, it is severe enough to interfere with daily activities which leads to lack of physical activity and sleep disturbances. The traveling circus of inflammation literally stops me in my tracks. Rest is essential to recovery. The more I try to push through chores or activities, the harder it is to recover. We just need to remember that when we’re resting we’re doing what our body needs to heal. And sometimes that is literally all I’m capable of doing. There are days when a shower and breakfast are the only tasks I have the energy to accomplish. Some people with lupus need up to 12 hours of sleep per night. Sleep is directly related to cognitive function and productivity and to brain fog too. Also be sure to get plenty of rest by scheduling frequent rest periods throughout the day.
Fever is a common manifestation of lupus and occurs in over 50% of patients. Most patients spontaneously run a low-grade fever. While the fever is under 101.5 F it can still cause chills and body aches. The random fevers literally stop me in my tracks. All planned activities get cancelled at that point and need to be rescheduled. Also, this unexplained fever may be the only warning sign that a flare is eminent. Of course, there’s acetaminophen or ibuprofen to treat the fevers as needed.
There’s a war waged within us that causes the fevers and fatigue. Along with general over-the-counter analgesics, our bodies need rest. While a healthy person thinks a life spent resting might be fun, in reality, resting becomes quite boring! For my own sanity, I need to keep my mind and hands occupied while awake. Between the fatigue and fevers, it’s easy to fall into a rut and become a couch potato. I know for a fact that doing even the easiest of activities can become tiring so I like to have a variety of restful options. On bad days, I sleep, watch tv, read and listen to music. Listed are some alternative activities that don’t require too much physical exertion while trying to focus on mind, body, and spirit.
Meditate and Practice Deep Breathing
They can lower your heart rate, blood pressure, and breathing rate. It’s a form of relaxation that allows your body and mind to be revitalized. Meditation helps you feel relaxed and calm. You learn to be present in the moment. Try using a meditation app or sitting alone so you can focus on breathing. The key is to close your eyes and focus on breathing then turning inward. Only five minutes of meditation per day can make a difference in how you feel including some mental health benefits too. I include prayer in this peaceful time. For me, I connect to a higher power, God. For those of you that are believers, whichever deity you follow, this is a perfect time to connect.
Journal Your Thoughts
Try journaling your thoughts and feelings in a notebook to reduce stress. Or start a gratitude journal. A gratitude journal is a great way to remind yourself of what you’re grateful for. It’s also a positive way to keep track of small accomplishments throughout the day. I started writing down what I was thankful for many years ago. It started with a book, Simple Abundance by Sarah Ban Breathnach. It has helped me tremendously to focus on the positive aspects of my life. Some days I make my blogging notes but only days without brain fog.so I can concentrate. Brain fog is another issue that has been discussed in a previous blog entry.
Read a Book
This also helps reduce your blood pressure and slow your heart rate. All of these calming effects are good for managing stress. Reading has been shown to decrease depressive symptoms too. Sitting down to read a book you’re interested in can help calm your mind and relax your body. For me, it provides an escape. I can focus on characters and get lost in their world while ignoring my own situation.
Listen to Music
Music has been linked to lower blood pressure and mood improvement. Depending on the type of music, it can pump you up or calm you down. Classical or easy listening music playing in the background can be soothing. Make a playlist of your favorite tunes.
Yoga is a great way to reduce anxiety and depression. There are studies that show yoga decrease stress response to your vital systems. A low-intensity yoga is best for stress relief. Do some stretches even if it’s from your bed. I stretch every morning before getting out of bed. It helps relieve the morning stiffness.
Talk About It
Talking to someone you trust can improve your mental health whether it’s a friend, loved one or professional. When stress or other lupus triggers flare up, you should have someone you can turn to. Overwhelming stress may make you want to keep to yourself but it’s best to talk about it so you can get it off your chest and let it go. I also belong to support groups on Facebook which is another source of like minded people. By responding to a post or asking a question in my support group I feel connected and have another lupus resource.
Spending time outside can really have a positive impact on how you’re feeling. It can lower your blood pressure. I know it soothes my soul. There are so many easy options to choose from; Connect with Mother Earth. Try Grounding and walk barefoot in the grass. Sit on your front porch, deck or balcony and listen to the birds chirp. Watch the sunset or sunrise. Look up at the night sky and search the stars and marvel at the moon. Take a drive and enjoy the scenery.
Distract with Creativity
Creative expression is a great way to manage stress. Again this is a distraction technique that can lessen your pain and calm your mind. You could try any low key crafting activity like beading, crocheting, knitting, needle point, adult coloring, and painting with acrylics or watercolors just to name a few. I love photography so I take pictures of flowers, sunsets and the moon.Not only does it provide a creative outlet but it reduces stress besides I can go at my own pace and sometimes end up with something beautiful. Although brain fog does affect my creativity since it hinders my ability to concentrate.
Set Some Goals
Write a list of goals. Just because you’re chronically ill, doesn’t mean you have to give up all your life goals. While we are no longer able to live a “normal” life, we can readjust our goals to accommodate our our new normal. Make a list of short term goals and long term too! We can live with Lupus within our limitations. Know your body, your symptoms and what causes the triggers that set off your flares. Get rest when you need it. Most of all, be kind to yourself.
I respond, “What aspect of my life hasn’t lupus affected!”
First and foremost, I’m constantly reminded of my mortality because my body’s immune system is chronically confused, attacking healthy cells. My body is unable to fight off even a simple infection. Besides, a simple infection can become a complex infection. A little cold can turn into much more for a Lupie. People with Lupus are prone to serious infections like pneumonia, and sepsis. In reality, any infection can spread throughout the entire body. So please, If you’re sick, even if it’s just a little cold, it’s imperative that you stay away from us Lupies.
It has affected my daily existence. My days are spent managing my illness whether it’s scheduling doctor appointments or following up with insurance payments or organizing my medications.
It has affected my capabilities, what my body is and isn’t capable of doing. The things that I once was capable of and now I can no longer accomplish. I was once an active ER nurse, now I struggle to take a shower or even get out of bed some days.
It has affected the foods I can and cannot eat. I stay away from nightshade vegetables like tomatoes and eggplants which are thought to increase inflammation.
It has affected the amount of medication I require to survive. The same medication that prevents the immune system from attacking itself also impair its ability to fight off infections. Too often, the medications have side effects in duality with treatment. While the medication can relieve inflammation it can cause nausea, muscle cramps and dizziness and even weaken our already compromised immune system. The drugs have side effects and that is included in how I feel.
It has affected all of my friendships, the ones I still have and the ones I’ve lost. Unfortunately, friends have gotten tired of waiting for me to feel better so I can go out and do fun things like shopping and attending festivals or concerts. Don’t even get me started on how it’s affected my intimate relationships! I’ve experienced tremendous loss in that department.
Its affected how others see me. How could someone not see you differently after watching me struggle to climb a few stairs or walk into a store.
It has affected that youthful idea of invincibility. I know for sure that I am not invincible. That has resulted in how I see myself and my self esteem or lack there of.
It has affected my aspirations. Too many dreams have been lost in the wind because they are no longer realistic. I have limited capabilities and feel locked in on a regular basis. The fatigue is overwhelming. Every actions requires a great amount of effort. The simplest of tasks take on a level of struggle.
In general, lupus has affected how I view life. For the most part, I try to plan ahead by doing damage control. I try to anticipate what can go wrong and plan accordingly whether it’s planning rest periods for activities or availability of handicap parking or scoping out the closest elevator and even packing extra medication.
While lupus is an invisible Illness, it has affected every aspect of my life. The loss is real so please try to be understanding and realize I have lost a great deal because of lupus. Be kind because the traveling circus of inflammation has not.
Most days I’m not on speaking terms with my body. After all, my body attacks me from within on a daily basis. It’s betrayed me on too many occasions to be forgiven. I’ve learned to not speak about what’s happening anymore and accept that while everyone around me tries to be understanding it is as confusing for them as it is debilitating for me. They’ll never truly know how I could look normal on the outside but feel wretched on the inside. In reality, many days the fatigue is overwhelming and I can’t move around my own house.
“I’m okay” is my standard response to how are you. My coping method is silence. Remember, You’re not obligated to answer to people who misunderstand the lupus battle. In the past, I’ve spoken with a counselor about how to deal with people’s lack of understanding. Over the years, I’ve learned how to be patient with myself. I realized that sometimes my pain and frustration are difficult to explain. Mostly, it is about coming to terms with my own life and limitations. Some days are difficult and I don’t want to bite off anyone’s head off. I’m just looking for support, compassion and a helping hand. When I don’t get the response I need, it’s disheartening. The fact that I need a nap after a shower is just a fact of my life and unfortunately difficult for others to understand. Every day for the last 25 years, I have pumped my body full of harmful drugs to alleviate uncontrollable inflammation. I’m furious knowing that this is relatively my only option.
No words will ever express what it feels like to know that you’re completely incurable. I’m devastated that my body has been through hell, inside and out. And fighting mad that I have to convince my doctors that I am sick. It’s frustrating and demeaning. I experience brain fog on a regular basis so I certainly do not need the dazed and confused feeling attributed to pain killers which most doctors think we’re seeking. Prednisone and aspirin keep the wolf from knocking down my door.
Is it too much to ask to live a relatively normal life? No. It is not. Here’s some tips for living with lupus:
1. Never give up and never give in! Develop a heart of the fighter because refusing to quit works. I will continue to fight each and every day I can. While I’m unable to achieve my to do list, I refuse to quit. I’ve learned to pace myself. I learned strength from my mother. I watched her body fail her for years and I watched her fight. Fight for her life and for her family. She always had a kind word and helping hand. I learned a lot about her during the last few years of her life. I witnessed her courage to overcome her limitations. She had a never give up and never give in attitude. You HAVE to fight with will and determination.
2. Fix what you can and compensate for the rest. Many symptoms are not fixable however sometimes I can find relief. While my hip pain is a permanent symptom, I finally saw a physical therapist and she worked diligently at increasing my strength and reducing the pain to a tolerable level. If I stay within my limitations, the pain remains tolerable. The reality is I can’t do what I want, when I want and sometimes not at all. That leads us to acceptance. You ARE allowed to have bad days. Although, you’re not obligated to hide your illness in order to make other people comfortable.
3. Accept what you can no longer do and live within the limitations. Sometimes it requires daily focus. In reality, it requires the ability to refocus on simply doing the best you can each day. My abilities vary day to day based on multiple factors such as fatigue, pain level, sleep disturbances and palpitations. Acceptance rather than anger serve you much better as hard as that is to accomplish some days. It is NOT your fault that you are sick. You don’t have to apologize for something that is out of your control. You are NOT obligated to explain why you are unable to do the things you used to do.
3. Respect your limitations. You are NOT obligated to do everything a healthy person does. You ARE allowed to know your limits. When you finally venture out for time with friends or family, respect your limitations and do not forget to stay within your schedule. If you don’t you surely will pay harsh consequences. If I push my limitations I will pay dearly and end up in a flare or increase my pain level. It’s the old adage, one day of activity requires 3 days of rest in bed or worse. You ARE allowed to stay in bed when the fatigue is so overwhelming that you can’t accomplish anything but get up to go to the bathroom.
7. Stop beating yourself up over what you can’t control. Accept the limitations and move on. Lupus is a chronic illness. It’s self defeating and depressing. Those feelings are hard to deal with. I try every day to make that day better, more productive and less painful. In spite of my limitations I always try to do my best. It’s difficult to accept the reality that my best isn’t what it used to be and that goes back to perspective. I have to accept my new best and let go of my old best. I try to help others to get the focus off of me. Remember, don’t be too hard on yourself and It is NOT your fault if other people leave you because of your lupus fight.
5. Perspective… Half the battle is putting life into perspective. Is this life threatening ? Am I really dying or is that just the emotion you’re experiencing? I go through a checklist; A B C’s if you will. I’m breathing. Is it regular or compromised? My heart is beating. Is it regular or rapid and irregular? Can I stand up? Feet on the ground or dizzy and unable to stand? If I’m not okay then I call my rheumatologist or if anything is life threatening 911. If I’m essentially alright, it’s time to evaluate emotions and what other factors are present. Your mind might be expressing emotions causing more drama. Don’t “what if…” Don’t worry about tomorrow, the weekend or a lifetime. I try to refocus, to be present and rest to calm down a bit. My mantra is “You are okay. Just breathe. You’re not a quitter!”.
6. Be realistic! When you’re low on energy the littlest of missteps sets off emotions. I can’t tell you how many times a simple spill has brought me to tears. Just picking up a glass of water can be challenging some days due to increased wrist pain. If the cup slips from my hand or spills, the effort to clean up a mess puts me over the edge. Realistically, it just a spill that can be cleaned up and not the end of the world.
7. Take it one day at a time and stay positive. The traveling circus of inflammation is always challenging but you’re stronger than you think. Spending the day on your couch can feel like an eternity. Remember that even though you’re in pain don’t let it consume you. It’s just a moment in time. Try not to put too much value on that moment because better moments are always ahead. Remember, life isn’t about waiting for the storm to pass. Life is about learning to make the best of what we have and dance in the rain.
The summer months bring unavoidable heat that cause sweating and uncomfortable rashes. Most people with autoimmune issues experience heat intolerance anytime the mercury is on the rise. Heat-intolerance increases the risk of overheating. Some lupies struggle to regulate temperature, resulting in the body feeling unbearably hot and unable to cool down. They can experience symptoms like excessive sweating, nausea, fatigue, dizziness and vomiting. Prednisone, the devils tic tacs, add to the problem. In addition, hot flashes, night sweats and dehydration are common.
Summer heat adds to my every day lupus challenges. Those of us with heat intolerance may have an underlying medical condition called dysautonomia which affects the body’s autonomic nervous system. The autonomic nervous system helps regulate body functions, including our response to heat. Naturally occurring nitric oxide in the blood dilates blood vessels. Vasodilation (widening of the blood vessels) happens when the body’s temperature increases. Vasodilation allows the heat to be carried by the blood to the skin surface where it can be released into the air. For Lupus Warriors, too much heat is released from blood to skin during vasodilation which causes overheating. It’s very common for Lupies to unexpectedly experience an intense overheating episode when temperatures are high. Direct sunlight compounds that problem. Lupies go out of their way to avoid the sun for fear of flares and rashes however, no matter how careful we are it’s inevitable.
I was a sun lover who enjoyed sunbathing, swimming and scuba diving prior to my lupus diagnosis. Now that I have an autoimmune disorder, I tend to dread the sunny days of summer even though I enjoy my time in nature. Awareness and planning can help us enjoy beaches, pool parties and barbecues. Any time spent outdoors requires planning, appropriate clothing and shade.
Here are my tips to stay cool:
~ When outdoors, try to limit activities to before 11am or after 3pm which avoids peak sunshine when the sun’s ultraviolet (UV) rays are strongest. That means stay indoors, use air conditioning and fans during the hottest hours of the day (11am to 3pm).
~ Seek shaded areas whether it’s a canopy or trees. Be prepared by using an umbrella if shade is unavailable.
~ Use appropriate sunscreen, the UVA and UVB rays could set off a flare. Look for a sunscreen that offers broad-spectrum protection as well as an SPF of 50-100 to protect your entire body and reapply every two hours when you’re outdoors, or after swimming or sweating. Always protect your skin from sunburn. Sun protection is even more important because UVA and UVB rays don’t just burn your skin, they worsen lupus symptoms, too. Apply sunscreen protection even when you’re just riding in the car or indoors near windows. The sun’s harmful rays penetrate through windows.
~ Keep cool! Ice-cold drinks can cool you down from the inside out. Stay hydrated with plenty of healthy drinks such as filtered water flavored with lemon, fresh cucumber, mint, or ginger. Avoid alcoholic beverages in hot weather.
~ Choose light-colored, loose fitting clothing. Loose clothing allows air to circulate over your body’s surface. Hats keep the sun off your skin. Wear protective sunglasses, 100% UVA and UVB. Wear a wide-brimmed hat that protects your nose, ears and neck. Buy clothing that’s rated with an ultraviolet protection factor (UPF). Use long-sleeved bathing suits with UPF. Protect yourself with a bathing suit cover-up when you’re not in the water. If you don’t have a UPF bathing suit, wear a T-shirt or other long-sleeved cotton shirt while swimming. Wear light weight clothing like long skirts, pants, and long sleeves when outdoors.
~ Stay cool by using air conditioning to avoid overheating. If you do get overheated, take a cool water bath or shower to bring down your body temperature. Fans circulate the air and help you stay cool. When outdoors, try wrapping a towel soaked in cold water around the back of the neck. Or use one of those high tech cooling fans around your neck. Avoiding strenuous activities during hot weather or in warm rooms.
~ We all need vitamin D to be healthy however I do not produce enough vitamin D and supplement it with daily capsules. We need to stay healthy and build a strong immune system by using supplements. Take your vitamin D capsule! Do not go sunscreen-free! Lupies fear rash and/or flare. I personally do not go out in the Sun between 11am-4pm. I love to garden and limit my time to 15-20 minutes a day but after 4pm or early mornings.
Be aware of emergency situations and when to seek immediate medical attention. Heat stroke is a life threatening emergency. Symptoms include the inability to cool down after being removed to a cool area, inability to sweat, a body temperature over 103°F, confusion, or loss of consciousness. Call 911.
Higher outdoor temperatures increase your body temperature, which can bring on a lupus flare. Stay safe by wearing your protective clothing, use air conditioning, stay out of direct sunlight, on excessive heat temperatures stay indoors where it’s cool. People with heat intolerance need to be cautious in extreme heat. This sensitivity increases their susceptibility to heat-related illnesses, such as heat stroke. Happy First Day of Summer🌞😎
Let me start by clarifying that lupus is unique to each and every one of us lupies. One person may have mild symptoms of a simple rash while others may have severe involvement that affect heart, kidneys and lungs. Also, autoimmune diseases come with other autoimmune issues such as Sjogrens, Hypothyroidism, Hashitmoto’s Thyroiditis, Inflammatory Bowel disease and Vasculitis to name a few. So it’s a cluster of problems with one affecting the others. For example, when my lupus flares, it can set off a chain reaction that travels systemically effecting different organs and areas on my body. Hence the name includes the word systemic, Systemic Lupus Erythematosus (SLE). Lupus is an invisible illness that most people know nothing about.
What does it feel like to have lupus?
It’s complicated! My body is at war within itself where the fighter cells attack healthy cells. It’s a downright mutiny happening every day 24/7 and every day I pray that the combatants do not win. For most people, it’s a given that they will feel well unless they come down with a cold or flu or trauma/accident. In reality, I never know how I’ll feel one minute to the next, let alone know how I’ll feel each and every day. Fatigue is guaranteed and it’s debilitating however the severity varies. Some days it takes effort to get out of bed and don clean pj’s while other days I can take a shower and complete a few light chores. Everything takes effort and requires more time than your average person. I do not get to live a normal active life. On a good day, my symptoms are still there but I can “push through”. When I enjoy a day out and about or lunch with friends, I pay for it by being incapacitated for a couple days requiring recovery time.
Let’s talk about the fatigue. It’s the most common and debilitating of the symptoms. It feels like walking around with a weighted blanket almost suffocating heaviness. Everything is an effort and I struggle to move every day. This fatigue is life changing. Even if I rest and get 8 hours of sleep I continue to feel tired and worn out, absolutely exhausted. I can prepare a meal but need to rest afterwards Needless to say, I’m worn out easily and usually need a nap by the middle of the day or late afternoon. I’ve learned to budget my energy allowing frequent rest periods, what I call “do-a-little-sit-a-lot”. , It can be alienating when you suffer from an invisible disease. I don’t have the energy to maintain relationships these days. Most people don’t understand anyway. I’m careful who enters my inner circle because I’m self conscious and fear judgment.
The next most common symptom of lupus is pain and inflammation. Joint inflammation was one of the first signs that led me to seek advice from a physician. By the way, it took about 10 years to diagnose my lupus due to random joint pain that resolved with over the counter anti-inflammatories. Joints affected are usually wrists, hands, fingers, elbows, feet, ankles, knees, hips and even my shoulders. The swelling affects each joint causing it feel like the space is overfilled with fluid and loose like it’s going to dislocate. The swelling that accompanies that joint pain is painful when the skin to the affected area feels like it will burst. I’ve had cortisone injections to just about every joint mentioned above. During a flare, I suffer from extreme joint pain and weakness. (During a flare the “normal pain level increases exponentially. It’s a different kind of pain than the “usual” pain.) Hip pain is the worst of my joint pain and is the only symptom that occurs symmetrically. Both hips hurt, burn and have limited range of motion. This directly affects my mobility making movement difficult and painful therefore It’s painful to walk, There are times that due to severe hip pain. I can barely walk let alone make my way up stairs. I’ve literally crawled up the stairs to my second floor bedroom because the muscles are weak and it’s just too painful. My hands and fingers are affected too. My knuckle joints and wrist become tender and swollen. It makes it difficult to hold a cup or glass and button my shirts or pants. So I’ve learned to plan ahead with sports bras, pull on pants and shirts along with slip on shoes. Lupus affects the nerve endings in my body, causing my thighs, calves and feet to burn and tingle. Numbness and burning with tingling sensations run up my arms and down my legs. This frequently happens in the evening or during the night. It makes sleeping difficult.
Fevers are a common side effect of all that inflammation. Fevers occur often but lasting approximately 12 to 20 hours. They occur mostly in the evenings lasting throughout the night. It completely incapacitates me as my aches and pains become amplified. This happens at least once a week and more frequently as the inflammation increases. Fevers at night also contribute to lack of sleep.
Insomnia plays a part in how my day will unfold. Pain can keep me up at night and sometimes I toss and turn trying to find a comfortable position that eases my joint pain. Often I use pillows to support my arms and legs. Lack of sleep affects my ability to do anything and everything. It obviously adds to the fatigue.
Every day is guaranteed to begin with morning stiffness. The stiffness is debilitating, my joints do not bend without pain therefore stiffness and pain go hand in hand. The stiffness lifts slightly after I start moving. It takes anywhere from minutes to several hours. It I stretch with some simple yoga poses every morning, it loosens up my joints making it easier to get moving with less pain. The stiffness returns after sitting for long periods of time and my body locks up again. When I get up from a chair it takes a bit for me to be able to straighten up and start walking. It’s a challenge to accomplish tasks when my body is too painful to move. The level of joint pain and stiffness varies. Some days I can move with minimal pain while other days I’m bound to the couch because of pain that adds to immobility.
Taking Inventory…. Let’s start from head to toe;
I get headaches, brain fog, forgetfulness and trigeminal nerve inflammation which affects my right eye. The trigeminal nerve inflammation also causes pain along the nerve tract along the right side of my face from my right cheek to above my ear and over the parietal area of my skull. Headaches are common, they come and go frequently. When it’s severe, my head pounds and I can feel my heartbeat pulsing in my ears. Some days it’s so bad my head feels like it will explode. There are days that I’m easily confused by brain fog which causes difficulty forming a sentence or remembering a name or familiar directions. This is especially disheartening for me since I enjoy writing my blog and reading. This past year lupus caused inflammation in my eyes resulting in retinal vasculitis. That caused blurred vision and light flashes with eye pain. I was treated with methotrexate and prednisone.
Sjogren’s syndrome, accompanies lupus for some of us, causing dry mouth and eyes along with any other mucus membranes in the body. Due to the dry eyes, I require rewetting eye drops several times a day. In addition to eye dryness, there’s mouth dryness too. To combat it, I use Bioteen mouthwash as a lubricant. It helps to avoid cavities and mouth ulcers caused by the dryness. Lupus has attacked my thyroid causing thyroiditis and hypothyroidism.
My skin is sensitive and I need to be aware of the products I use. I’m super sensitive to the sun, called photosensitivity. When I’m exposed to UVA and UVB light I break out in a rash and the exposure can cause a flare up. I need to cover-up when I’m exposed to avoid problems. When I’m driving I need to wear long sleeves or sun screen in order to avoid getting a rash. Sometimes no matter how careful I am, I can still break out. When that happens my skin itches and tingles, it burns. When my lupus flares I can exhibit a butterfly rash across my face that covers my cheeks and nose. It’s embarrassing. When I have a flare, I can develop painful sores in my mouth and nose, making eating and drinking a challenge.
I’m nauseous every day! It’s terrible. The nausea is there if I eat and if I don’t. My stomach always feels upset. There are a lot of days that I eat rice, potatoes or bread since they’re easily disgusted but not nutritious. The BRAT diet of bananas, rice and toast is a staple in my life. I take zofran which is an antiemetic medication to decrease the nausea. Another pill added to my arsenal. Also, I need to monitor the foods I eat since some foods like nightshades can increase inflammation or cause a flare. Some days I have diarrhea. Inflammation can occur in the stomach lining causing gastritis. Also the large and small colon can become inflamed causing irritable bowel syndrome.
Frequently, I feel my heart beating wildly, causing me to feel dizzy, exhausted, and anxious. I have an idiopathic heart rate since lupus inflammation has found its way to my heart. Sometimes I experience chest pain with the usual palpitations. It is discouraging and makes me anxious. I’ve learned not to catastrophize however I can’t help but worry and my mind races, wondering, Is it a heart attack? Unfortunately, I’m all too familiar with cardiac complications since I’ve been through pericarditis several times. I start out in denial then, I assess old symptoms vs. new symptoms and if this is the usual pattern I then ride it out until it passes. If it gets worse or new symptoms develop I’ll go to the ER knowing those doctors aren’t trained in dealing with lupus. So, they’ll rule out anything life threatening and send me home without answers. I currently have pericarditis that’s being treated with high dose steroids and cytoxic agents and biologicals, all of which come with their own hellacious side effects. I’ll cover that in a different blog.
That about sums up my symptoms caused by the traveling circus of inflammation called lupus. Let me add, on really bad days, I feel all of these things at the same time. Even If I take my lupus medications as directed, my condition can flare. Flares are episodes when my symptoms exacerbate and I feel worse than “usual”. They can occur for months or years. Triggers include stress, overwork, lack of sleep/rest, sun and fluorescent light exposure, injury and illness like the cold or flu. Some triggers cannot be prevented. For example, a flare is stressful which leads to more stress that causes more fatigue and complications.
Lupus patients often refer to this disease as “The Wolf”. Lupus is Latin for wolf. In the 18th century, when lupus was just becoming recognized as a disease, it was believed to be caused by a wolf bite. We now know it’s not but lupies still use the term. I’m constantly wondering if the wolf is going to knock down my door.
Then there’s disease progression, it’s been a 30 year journey and new symptoms have developed but nothing seems to resolve. I don’t get a break from most of these symptoms and it can all become overwhelming. I spend hours managing my health; doctor appointments, picking up prescriptions, insurance inquiries and taking copious amounts of medicine. There are days I just want to cry. The disease takes its toll on career, friends, family and relationships. It literally affects every aspect of my life. Lupus affects of your emotional wellbeing too. It plays crazy mind games making me feel useless and unworthy. I never feel safe, never knowing what will be affected next or how bad it will get. Many days I feel defeated. My days are now altered due to my forced lupus lifestyle. Nobody would know the goals and aspirations I once had but because I’m too tired to achieve them. I did not choose this nor did I do anything to cause this illness. I have to admit that I’ve had days where I hate myself and my life. If I go too far down that rabbit hole it will lead to depression. I’m learning to accept that I’m not the me I used to be and take pride in my softer more laid back side of myself. I’ve learned to live within my limits, abiding by what my body can and can’t do. I’ve adapted my schedule and set boundaries. I rarely make plans with people because I have no control over how I may feel that day. My reply to invitations are we’ll see or maybe. I know it’s frustrating to people who don’t understand but I don’t feel that I can commit anymore. When I must commit to an activity like a special occasion, I rest up the day before and medicate ahead of time. Lupus is humbling as well. It’s chipped away at my self esteem. It’s not in my nature to ask for help but when I do reach out, I’ve exhausted my options to resolve the issue on my own.
I’ve learned to take responsibility as a patient by doing my part, learning as much as I can about my illness. I try to stay current on the latest treatment options. I’m also on a couple online support group sites. Every doctor visit requires prep time composing notes with symptoms and questions. Once seen by the doctor, it’s followed by some sort of new instructions in addition to the lab tests or procedures. I have a binder to reference my comings and goings, it’s extremely helpful to compare and review history however the digital portal to the hospital makes life easier since all doctors can see info with a visit summary and no binders to carry. I do travel with a quick reference sheet of history and meds.
Treatments are different based on the severity of symptoms and not all treatments work for everyone. We’re all individuals and what treatments work for one doesn’t necessarily work for the others. Some people like myself are sensitive to certain medications having hypersensitivity reactions that cause adverse effects like swelling, vomiting or allergic reactions. Anti-inflammatory drugs, anti-malarials, and steroids, such as prednisone, are used to treat lupus. Cytotoxic chemotherapies similar to those given in the treatment of cancer are also used to suppress the immune system. In addition, treatment options have been slow to hit the market. Until recently there weren’t any new drugs developed in more than 50 years. Quinine was introduced in 1894 while most modern treatments for SLE appeared in the second half of the 20th century: glucocorticoids (1948–1952), quinacrine (1951), cyclophosphamide (1954), hydroxychloroquine (1956), azathioprine (1957) and mycophenolate mofetil (1980s). Progress is being made, at the end of the 20th century and the beginning of the 21st century Benlysta was approved by the fda to treat lupus specifically and Saphnelo was released in 2021! However they both come with serious side effects. Just once, I’d like a medication to solve the problem instead of trading one set of symptoms for another. Better yet, I’d really love a cure!!
My world view is very different from everyone else’s. Everyday life issues become exaggerated for lupies. Every task requires more energy to complete. I don’t have the required energy to get through the day let alone the added energy to deal with life’s unexpected problems. The complexities of this disease is that it requires a tedious balance between survival and a conscious choice to creating a life well lived. I like this phrase, a delicate constitution with the heart of a Fighter. It describes lupus warriors. If you’ve read this far,
I appreciate your patience and that you took the time to listen and learn. I started this blog 6 years ago on the 20th of the month of May. 64 posts later, I’m still trying to educate and express my feelings about lupus. I do not write for sympathy but in hope of creating awareness and understanding.
The universal chart used to rate pain indicates different levels of pain on a scale from one to ten, with ten being the worst. Coinciding with that scale are different facial expressions from smiling to crying. However, for someone who has a chronic illness that scale comes with some perspective. Considering lupies walk around feeling like they’re stricken by the flu and accompanied by joint pain on a daily basis, that pain scale really isn’t applicable. It requires perspective.
Prior to being diagnosed with lupus, conveying my pain level to nurses and doctors was easy. Before becoming chronically ill, a good day didn’t include pain. That changed when I began experiencing joint pain every day, the traveling circus of inflammation arrived and put down stakes. There is always a joint, muscle, or tendon that hurts accompanied by fatigue and nausea. Now, on a good day my pain levels hover around four on that pain chart and I’m able to tolerate even push beyond the pain because it has become my normal. It’s amazing what a person can learn to live with and compensate for.
Lupus is considered an invisible illness. After all, the average person cannot see the exasperating symptoms we’re experiencing. Also, there are occurrences when doctors and nurses have doubted or dismissed my pain because I don’t look like I am in as much pain as I claim. They second guess that I’m not feeling as bad as I claim because I’m not crying in pain. It takes a tremendous amount of unrelenting pain to make me cry. I no longer cry when experiencing minimal pain levels which years ago had me in tears. Menstrual cramps would have me doubled over in tears in my younger days. A sprained ankle or wrist would make me miserable. I cannot say that lupus and chronic pain have dulled my senses but I must admit that chronic pain has numbed my entire existence. It doesn’t mean that I don’t feel pain instead it’s a different level of pain that is added to my baseline pain level I’m already exhibiting. The problem with learning to adapt and live with higher pain levels is that it’s terribly hard to explain.
Let me just say it’s complicated. It seems to me that the more pain I experience, the more I shut down. Too often, I fake being well so not to upset the people around me. Also, I have learned to protect myself physically and emotionally. I’ve learned to live within my limits. Crying or becoming upset increases my stress level which causes my lupus symptoms to flare.
Those who live with chronic pain hide their pain more often than they express it. One more thing I need to mention is just because we’re out doesn’t mean we’re not in pain. We may take full advantage of a good day but will pay dearly for it for 3-4 days after.
What would be helpful for chronically ill patients is if we had a new type of scale. It’s all a matter of perspective and trying to convey the big picture is challenging. I wake up every day in pain, somewhere in my body and most days with multiple places in my body. There’s a baseline pain level but there’s fatigue that goes with it. Then maybe, nausea or diarrhea are holding you hostage to a toilet so you can’t leave the house. Maybe you have brain fog and difficulty finding the right words to express and struggle putting a comprehensive sentence together. Maybe you are dizzy or lightheaded therefore you can’t stand or walk around well. Maybe you’re having palpitations and cannot function at all. None of the above are covered by that 1 to 10 pain scale. I think there should be a “scale” to asses functionality. We need a qualitative and quantitative measurement that can tell people how well we’re able to describe our circumstances. Pain would be a factor, but it wouldn’t be the only measure. It could be used in conjunction with the current pain scale. It’s so important to accurately express our situation to healthcare professionals and what level we’re being afflicted on a day to day basis.
I base my functionality on useable hours, functionality and how much disruption I experience in my day.
Let’s start with Zero: no symptoms, no disruption or impairment
1 – no noticeable limitations and functionality is normal
2 – occasional symptoms with minimal impairment
3 – consistent symptoms with minimal disruption
4 – noticeable symptoms with impairment and disruption to routine
5 – moderate symptoms which directly affect functionality including disruption to routine
6 – moderate symptoms consistently disrupt function and unable to accomplish tasks due to symptoms
7 – moderate symptoms preventing normal function like a simple shower
8 – severe symptoms that limit activity to activity of daily life (adl’s) tasks like getting back n forth to bathroom and getting out of bed and basic self care
9 – severe symptoms which require help with essential functions; assisted adl’s.
10 – need immediate medical attention and unable to function due to symptoms
Note our normal pain level, that we’re accustomed to some level on any given day. We’re used to a certain amount of pain throughout our day. The presence of that level of pain becomes our new normal and any new pain is in addition to that pre-existing pain. Most of us walk around with a baseline of 4 or above and every number after that the amount of pain goes up exponentially. Whatever number we say, it’s compounded by the pre-existing base level. Realistically lupies don’t belong in the ER. They don’t know what to do with us unless there’s something they can treat like organ issues such as heart, lung or kidney problems. In a previous blog I wrote about useable hours. Perhaps that’s a place to start with physicians and nurses. To any healthcare professionals out there reading this I’d like to add believe us when we tell you we’re in pain. This is not a ploy for attention. And, please try to remember that our pain scale is altered and try to put yourself in our shoes so you can see it from our perspective.