This is one of the last images I see every night before I go to sleep. Less than seven years ago my bed side table was adorned with framed photos of my children and macaroni art work. Since that time it has been visited by a myriad of experimental prescription medications to battle inflammation, blood clotting, pain and swelling. Over the years there have been allergic reactions, misdiagnosis of epic proportions, too many blood tests to count and enough medical appointments to fill my calendar daily for a year. I am thankful for free health care.
I truly love my life. I have learned to be grateful for things big and small. I have days when my husband has to help me up the stairs, but I have days I can jump with my son on the trampoline. Some nights my body spasms are so bad I can’t catch my breath, and some nights I fall asleep soundly on my husbands chest. There are times I will physically and emotionally fall apart in a hot bath to spare my family, and other times we all play cards and laugh for hours. Yes I have physical limitations, yes I am in constant pain, but I wouldn’t trade my life for anything.
I still remember the exact day when I was sat down and told the words. “Great news, we got the tests back and even though your MRI shows you did have a small stroke, you don’t have MS or Lou Gehrig’s……it’s Lupus. I know he continued to talk, I have no idea what was said. The edges of the room blurred and the ringing in my ears was piercing my brain. “Am I not too young to have a stroke?”” Why did I have a stroke?”” What is Lou Gehrig’s disease?”” Why did they think I had MS?”” Don’t people die from Lupus?” These questions were firing around the walls of my brain at light speed, yet not one fell out of my mouth. I sat in that room with my hands clenched to the exam table. My heart was now pounding so hard in my chest I thought it would explode. The tears started welling up in my eyes as I thought about my future. I painfully walked into this doctor’s office almost three years ago. I had fired my previous physician of nineteen years because he couldn’t provide me with answers to my failing health. Here were my answers and now I wanted nothing more than to shovel them back into the abyss with which they came. Sometimes ignorance is bliss. My doctor shook my hand and tried to reassure me that I had nothing to worry about. He informed me that we would get all of “this” sorted out. I was offered anti-depressants, pain medication, and told to rest. I declined the anti-depressants and within 48 hours my entire body was covered in hives from the codeine. I was off to a great start.
My doctor rallied around me with a plan of action. It almost resembled a super hero movie. He informed me that a team of specialists would all need to see me and then they would all come up with the best possible plan. Captain Cardiologist will fly in with his treatment plan, in six months to a year. Please await a call from The Hematologist Hero, approximate wait time is eight months and they will discuss their plan of attack. Next up, Rheumatoid Rescue Man who is in high demand so expect a one year wait. I am thankful for free health care. I was also hopeful because I finally had a doctor that was listening and wanting to help. I was just unaware this was all going to take almost three years total.
When you suffer from chronic pain and you don’t know the cause, you truly believe all you want is a diagnosis. You no longer want people telling you it is in your head. You want to have a name to attach all of this unbearable pain to. You want something to take this crippling pain away and have your life back. I would like to tell you what I have learned since my diagnosis.
- You may never get a diagnosis, and that is okay.
- Your pain is real.
- Your pain belongs to you and nobody else.
- Stop feeling the need to justify your pain.
- You are responsible for how you react to people and your life with chronic pain.
- You need a solid support system. Spouse, family, friend, or online group.
- You need a great doctor, so if you don’t have one you trust, please find one you do.
- Eat well. This is a hard one for most, because pain can cause nausea . Make what you put in your mouth count. Now more than ever you need vitamins and minerals.
- Let yourself rest. It took me years to learn to listen to my body. It will tell you when it needs a break. If you don’t listen it will shut down.
- Exercise. Here is what I have to say on this topic. When we are in pain it is very easy to curl up and be still. Nobody likes to move when they hurt. Remaining still for too long is the worst thing for you. On those rough days even a short walk around your house or back yard is enough. Swimming is one of the best exercises for people with chronic pain.
- Be kind to yourself. We all know how easy it is to get down on ourselves. This is not an easy life, so we need to find ways to cope. There are lots of on-line support groups, lean on your family and educate them, talk to a therapist who specializes in chronic pain, or try a new hobby ( distraction works great for me on high pain days.) Trial and error. Try lots of things and find what works for you.
- Always remember you are the one in control. If you don’t like the answers you get from one doctor, keep going. I have seen many, and until I found the ones that had the same goals in mind as I did, I kept searching. Yes you can fire a doctor, they work for you.
- Your physical health has a direct correlation to your mental health. I cannot stress this enough. Stress will make you more sick and cause your pain to be worse. When we put our bodies through too much stress, physical or emotional, our body releases the hormone cortisol. Having a constant elevation of this in our bodies causes numerous health problems. Most importantly it increases chronic pain. Take care of your mental health.
- Last but not least, be patient. You have to change how you think about life now. You are not suffering from anything. You now have to learn to LIVE each day. It will take patience each and every day to overcome the obstacles. I am not suffering from Lupus, I am living with it.
Those days when you cannot wrap your brain around the intensity of the hot, searing pain in every joint. When the world has faded out and every nerve is raw, every muscle is tightened. When you aren’t sure if your own legs can hold your body weight. Those moments when you are shaking, getting through second by second, breathing through not knowing how to make it. When you see clumps of your hair in the shower, or you are upset with yourself with having to cancel plans because of pain. I have been there.
People in chronic pain often find themselves withdrawing from important friendships and relationships. But research has shown that social isolation activates the same pathways in the brain as physical pain (Eisenberger, 2012). Loneliness and isolation hurt—literally. This is just one example of the many ways physical pain can impact a person’s physical, emotional, and social health.
We need to keep talking about chronic pain, and supporting each other. Be kind. We are not in this alone. We do not need to feel shame, embarrassment or defeat any longer. Let’s stop waiting for the next famous person to come along and shed light on a chronic illness. Embrace everyone, love everyone and support everyone today.
Much Love ❤