APRIL 2018 UPDATE: I’m sicker than I’ve ever been. Way sicker than when I wrote this post, and everything I thought would happen in 2015 has happened. SIGH!
I bought a wheelchair in late 2017 because my mobility has been compromised by the addition of those two extra diagnoses I mentioned in March 2017.
My step count is still low. I’m hovering between 1,500 and 3,000 steps per day and we’ve discovered with my medical team that GET (Graded Exercise Therapy) does not work when you have ME/Chronic Fatigue Syndrome on top of Ankylosing Spondylitis. I’m walking when I can and using my wheelchair when I hit 3,000 steps.
This photo was taken last month in Kaohsiung at Lotus Lake after a three day vacation. Kaohsiung is a very accessible city by wheelchair and we got around fairly easily. It was a fun three days, but I got sick from too much activity about a week later, which is the norm for people with my conditions.
I’m captaining The Walking Spondies again for Walk AS One and Walk Your AS Off again this month and next, but we decided it would be best for me to resign from my job and volunteer work. This will allow me time to rest, and hopefully I’ll be able to fly home in July 2018 to see my family.
Here are a few 2017 posts I’ve written since I got my last diagnosis in February 2017 and when I last updated this article:
March 2017 Update: I stumbled upon this post today and realized it was written two years ago and nothing has changed. I’m sicker than I was two years ago.
I’ve developed additional issues with my health, including two new diagnoses that I’ll get around to sharing with you at some point. They are both secondary conditions to AS.
I am still involved with Walk Your AS Off and Walk AS One and we are all still working hard to raise awareness for Ankylosing Spondylitis.
This year, I am going to be relying on my team, The Walking Spondies, to walk for me as I can no longer do it for myself without causing damage. My daily step count has been at an all-time low of 1,500 steps per day since November 2016, and my doctors have advised me to rest as much as possible.
Walk AS One is our new non-profit charity organization with 501c3 status that organizes worldwide AS Walks and our group of volunteers finalized its status as a new non-profit it late 2016 after almost a year of hard work with six individuals, all of us are quite sick with Ankylosing Spondylitis.
We now serve as its Board of Directors and we are expanding quickly in 2017.
Today is World AS Awareness Day, and it is typically held on the first Saturday in the month of May. Today’s post is for the millions of people who suffer worldwide from invisible illnesses like Ankylosing Spondylitis.
Over the past month, I have been writing and posting about Walk Your AS Off, a global virtual event that has over 60 teams walking in locations around the world. We are walking to raise awareness for Ankylosing Spondylitis and its associated family of diseases.
May is our Official Walk Month, but my team, The Walking Spondies, has been walking and training throughout the month of April by walking, gathering together for walk meet-ups, and posting about our efforts. If you’d like to start walking for awareness and you’d like to join my team, please visit The Walking Spondies page on Facebook and leave me a message. I’ll send you details on how to join us.
Since I started raising awareness for AS and autoimmune-related illnesses on April 1st, some pretty amazing things have happened (to me):
- My posts about AS Awareness have reached readers all over the world.
- My posts have connected me with 8 other people in Taiwan that have AS.
- Most importantly – for me – I am now at Tzu Chi Buddhist Hospital, where I am receiving better care than I was at my previous two hospitals.
I don’t write or post about my illness to gain sympathy or attention. I write to bring these issues out into the public eye.
Autoimmune illnesses have been on the rise over the last 100 years, and most of them are labeled as invisible illnesses, which means you can’t really tell that a person is sick just by looking at them.
Many of us struggle to be heard, to be believed and to receive the support we need to live our lives.
My illness, for example, is severe enough that the possibility of being in a wheelchair is not far off. I’ve already been pushed around in a wheelchair on several occasions since falling ill. I’ve had to use a cane to walk. I’d probably be on disability as well if I didn’t work from home.
I spent most of November 2016 in a wheelchair. So far, 2017 and 2018 have been the same.
My wheelchair is a Karma brand. Isn’t that funny? (That’s Asia for you.)
For simplicity’s sake, I’ve broken down these facts into readable sections. If you’re interested in learning more about chronic invisible illness or about what I go through on a regular day, read on.
FACTS ABOUT MY CHRONIC INVISIBLE ILLNESS
- Many people think I only have Ankylosing Spondylitis, but autoimmune illnesses tend to form groups. If you have one, you will likely develop another. I also have Fibromyalgia, and I suffer from ME (Chronic Fatigue Syndrome), and chronic ear infections and skin rashes. In 2017, I added severe IBS, CRPS and PTSD from years of being ill to the mix. My doctors are also keeping a close eye on me because they think I am in the beginning phase of developing diabetes.
- I was diagnosed in 2009, but I was presenting symptoms in 1999.
- I have been sick for as far back as I can remember. I have always had aches, pains, fevers, rashes and infections that couldn’t be explained.
- Most people think I’m happy and upbeat, but that is the old Carrie. She’s still there from time to time, but I don’t see her much anymore.
- Living with a chronic illness is the hardest thing I’ve ever done. Some days I’m strong, but most days are a real struggle to get through.
- Some days I don’t leave my bed or couch. Some days I can’t even sit up to eat. At times, I’ve spent several days in bed because I simply don’t have the energy to move or because I hurt too much.
- I suffer from autoimmune fatigue all the time. Imagine how you feel on the worst day of having the flu. That’s how I feel most of the time. My body is so busy fighting the pain and inflammation, I don’t have any energy left for anything else.
- Mornings and late evenings are really hard for me. It can take 2-3 hours for the pain and stiffness to subside and for me to get moving. At night, I often cry myself to sleep because I can’t get my body to relax.
- I take more than 15 pills and supplements a day to manage my condition. The next step is injectables and IV infusions.
- Some of the drugs that I take to manage my condition are used to treat cancer patients. Most of them come with horrible side effects.
- AS and Fibromyalgia are rated on the McGill Pain Index as extremely painful diseases. The pain associated with these diseases comes very close to the pain experienced with childbirth. The main thing to remember is that childbirth doesn’t last forever, whereas you can look forward to a lifetime of unending pain with Fibro and AS. Check out where my new diagnosis, CRPS (Complex Regional Pain Syndrome), is rated.
- Some days are better than others, but just because I’m smiling doesn’t mean I’m not in pain.
- One of the hardest things for me to accept is that I never know how I’m going to be feeling or when a flare will hit.
- I miss being able to run, jump, and dance. I often can’t do more than an hour of basic physical activity (walking) before I get fatigued. This was reduced to 2o minutes of walking or standing in November 2016.
- Gentle exercise and activity is good for people with AS. Walking helps. Contact sports definitely don’t help. Walking makes me sicker because my energy levels are depleted at the mitochondrial level. I’m like a half-charged battery when I wake up every morning.
- It is really easy for me to overdo things. I never know how much activity is going to land me in bed.
- This is my new normal. I’ll never be the person I was 10 years ago, but I’m still me deep down inside.
- It has been hard to give up my independence and to accept that I need help most days.
- It’s hard for me to say no or accept my limitations.
- Having a chronic illness is very lonely and isolating.
- Everyone thinks I’m strong, but I’m not. I wallow in self-pity a lot. I retreat into a cocoon when things are really bad. When you’re in pain and there is no end in sight, all you can think about is how to ease your pain and when it will end. There is nothing else.
- I suffer from brain fog, anxiety and depression because of these diseases.
- I also suffer extreme anxiety and depression because of the drugs and their side effects.
- Depression is a real danger for me. Sometimes I can’t see the light at the end of the tunnel. On really bad days, I think about dying.
- Nothing else matters if you don’t have your health.
FACTS ABOUT ANKYLOSING SPONDYLITIS (AS)
- Ankylosing Spondylitis is not old-age arthritis. It’s autoimmune arthritis.
- An autoimmune disease is one in which the body’s immune system mistakenly attacks normal cells.
- There are many types of autoimmune arthritis. You are probably most familiar with rheumatoid arthritis (RA), which happens when the immune system attacks the lining of the joints. This leads to inflammation that can affect the entire body.
- AS is very similar to Rheumatoid Arthritis.
- AS and RA are crippling and disabling.
- AS is arthritis of the spine that strikes young people, typically between the ages of 17 and 35.
- AS can also strike children as well. The youngest patient I know is nine years old. She has Juvenile Ankylosing Spondylitis.
- Akylosis means fusion, which may be fibrous or bony. Spondylitis means inflammation of the spine.
- AS is not a rare disease. It is more prevalent than Multiple Sclerosis (MS), Cystic Fibrosis (CF) and Lou Gehrig’s Disease (ALS) combined.
- Over half a million people in the US have AS.
- AS is difficult to diagnose in the early stages. It is the most overlooked cause of persistent back pain in young adults.
- The hallmark feature of AS is the involvement of the sacroiliac (SI) joints. My doctors were able to diagnose me with AS because when they took x-rays of my SI joints, they could clearly see the inflammation in that region. My doctor traced an outline on my x-ray for me and said, this is what AS looks like when it’s active.
- The average number of years it takes for a patient to be diagnosed with AS is 10 years.
- AS is a systemic and chronic inflammatory disease of unknown origin. It attacks your whole body.
- AS causes severe chronic pain, discomfort, and spinal stiffness.
- AS can damage other joints in your body, such as the hips, shoulders, knees, elbows, feet and hands. It also hits your eyes, heart, and lungs. Besides the joints, manifestations of ankylosing spondylitis typically involve the eyes — with uveitis, which presents as acute eye pain, blurred vision, and sensitivity to light
- Frequent gastrointestinal infections can occur with AS.
- Almost all cases of AS are characterized by painful episodes known as flares. Flares are followed by periods of remission where symptoms subside.
- AS flares can last for months or even years.
- Pain sufferers often are misdiagnosed, misunderstood and miserable.
- Inflammation from AS can cause new bone formation on the spine, which causes the spine to fuse together.
- In severe cases of AS, the spine fuses in a forward-stooped posture. This is why AS is also called Bamboo Spine Disease.
- Ankylosing spondylitis can be blamed for a “hunchback” appearance.2
- The exact cause of AS is unknown, but genetics plays a key role in AS. So does environment.
- There is no cure for AS.
FACTS ABOUT CHRONIC PAIN AND FATIGUE
- Chronic pain is defined as any pain that lasts more than 12 weeks. Acute pain is a normal sensation that lets us know we’re injured. Chronic pain can be acute pain and it can persist for months or even longer.
- Chronic pain is the number one cause of adult disability in the US.
- Chronic pain places an emotional and financial burden on patients and on their families and caregivers.
- A patient’s unrelieved chronic pain problems often result in an inability to work and maintain health insurance.
- A recent Institute of Medicine Report states that pain is a significant public health problem that costs at least $560-$635 billion annually.
- Pain, especially chronic pain, affects more than your body. It’s psychologically stressful and can lead to emotions like anger, frustration, and suicidal thoughts.
- Pain and stress are a vicious circle: Pain increases stress levels, and stress can make pain worse. This can cause depression and make it difficult to concentrate.
- Chronic pain not only hurts, it also causes isolation and depression.
- Chronic pain is a challenge to treat because it is not understood well.
- Chronic pain is devastating. It damages productive lives and tears families apart.
WHAT YOU CAN DO TO HELP A FRIEND WHO IS SUFFERING FROM A CHRONIC ILLNESS LIKE AS
If you know someone who is in chronic pain, you probably want to help. Many people aren’t sure how to go about it, and sometimes a general offer of ‘Let me know what I can do’, isn’t enough. There are ways to show that you care though.
- Offer to come and visit. Just because your friend can’t get to you doesn’t mean she doesn’t want company. Don’t be offended if she says she doesn’t want visitors. Some people, especially me, don’t want others to witness their pain. I often say no to visitors in my home because I feel like I have to entertain them. My home is the one place I don’t have to work at putting a smile on my face when I’m in agony.
- Don’t tell your friend that you know how it feels. Suffering from the flu, having a broken leg, or dealing with a bad back don’t compare to what your friend is going through. In fact, your friend might be feeling like she has all three.
- If you don’t understand your friend’s condition, ask her questions. She would rather tell you than have you ‘think’ you know what’s going on.
- Don’t give unsolicited advice about her health. Don’t wait to be asked for help. If you want to help, just do it. Drop by with some food or offer to help change the bed or clean up.
- Offer to take her to the hospital and sit through appointments with her.
- Don’t stop inviting your friend to events because you think s/he might be offended by your invites.
- Don’t tell your friend that she doesn’t look sick. (Nothing invalidates us more than having someone tell us we look great when we feel like we’re dying.)
- Try not to let your friend know that you feel uncomfortable around her. She is probably already aware of this. No one likes being around sick people.
- Show your friend that you support her by learning about her disease.
- Slow down and walk at your friend’s pace.
Want to do more or know more? Join my team, The Walking Spondies, and walk with us throughout the month of May to help us raise awareness for millions of people around the world who cannot walk for themselves.