Living with Pain

 Pain. We endure pain in many forms. Depending on one’s tolerance, will determine if it needs to be treated. When I was abled-bodied, I basically took Tylenol for headaches or muscle pains. Even when I had gallbladder attacks, I just took Tums and a heating pad to relieve my pain. 

Guillian Barre Syndrome (GBS) is a rare autoimmune disease affecting the peripheral nerves. 1-2 people per 100,000 per year are diagnosed with GBS. Depending on your GBS sub variant, will determine how to treat you or the severity of the residual effects will be. Recovery can be quick or it can take up to 2 years to recover fully. Then there are GBS survivors who after 2-3 years where residual effects become permanent (that’s me!). There are some sub variants, such as AMSAN, which will fall in the 5%-10% range of those diagnosed where recovery impacts the autonomic system and could have a life-threatening or fatal outcome (that’s me too!). Recovery outcome is poor and will have residual effects remaining. I fall in this percentage, as I had a cardiac arrest and needed a temporary pacemaker to stabilize my heart rate as I had bradycardia (slow heart rate). Other autonomic system dysfunctions I have are: blood pressure fluctuations, diaphragm dysfunction (inability to cough from the lower lobes of my lungs) and the inability to control my body temperature. My body is feeling one thing like cold feet but the reality is my feet are warm. I find myself asking my HCAs if a need an extra blanket to be put on my feet to make sure my feet are kept warm. Plus I have a neurogenic bladder and neurogenic bowel due to autonomic dysfunction. These last two diagnoses are commonly found in spinal cord quadriplegics too. 

If there are lessons from being diagnosed with GBS-AMSAN, make sure your chicken is fully cooked for starters, so you don’t get food poisoning. The other is it has brought to light things I couldn’t know when I was abled bodied. Growing up I didn’t know too many people who had a physical disability, until my sister Kathryn who had to have her left arm fully amputated when her cancer came back the second time. All you saw was her “ability” and not her “disability”. Fast forward to now, and I am now “walking in their shoes” of someone who is physically disabled. The barriers, the limitations one faces and how society of infrastructure has no idea how to make something “wheelchair accessible”. Case in point, the McDonald’s across the street from AgeCare-Skypointe, says it’s wheelchair accessible, but I can’t get through the front door. I was told by the manager, I could have a friend come inside to purchase my food or use the drive-thru. Can you imagine?! 2021 - and I can’t get into a place as my wheelchair is too wide. 

The big education and appreciation are of the people suffering from an invisible disease - PAIN. Someone who has to deal with pain on a daily basis can put a mask on, so that people are not aware what they really feeling. I have come to realize through this journey of living with GBS, you can build up a threshold for pain where you don’t need pain medication, but you do come to your limits and no matter what you try to do, the pain remains. There is not enough distraction to erase thinking of one’s pain. Constant pain can lead me to be emotional as you just want the pain to stop and the pain medication doesn’t even touches it. You become exhausted and you can’t keep your eyes open any longer as the pain makes you tired all over.

When my symptoms began on the morning of September 9, 2016, it was pins and needles with numbness. Nothing major - it felt as my hands fell asleep and it would only temporary. Wasn’t really painful, just a discomfort in my extremities. It was when my legs became wobbly with pins & needles that I knew something was going on. While waiting at the hospital to be seen, the autoimmune reaction began to spread up to my abdominal area, OMG that intense pain brought tears and sobs. It was worst then any of my gallbladder attacks. When I went to have my lumbar puncture later that night, I was paralyzed from the shoulders down by then. I couldn’t even hold then pen to sign my consent form! The next time I remember pain, was 6 weeks later when I finally woke up. Numbness, pins and needles were still present but the numbness seemed heavier or thicker which increased my feelings of pain. As the weeks and then months then years went by, this feeling has never gone away from my extremities. Sadly, I no longer believe this feeling will ever go away. What I have noticed of lately, my pain level has increased and medications are not really touching my pain. It sure does put a damper on my day. Some days the numbness, the electric shocks from my nerves as well as the pins and needles go up and down my arms and legs are so acute I have no energy to be transferred to my wheelchair. I just want to stay in bed and be anti-social as don’t want people see the pain in my face. 

When I was lying in my bed in the ICU, I would get excruciating knee pain. It felt like my knee was being being pulled under me as if I was kneeling or that I had my leg under the other leg. The poor nurses had no idea how to help me as when they took the covers off, my leg was sitting straight. I thought they were lying as I knew what I was feeling. Having no voice, as I had a tracheotomy at this point, didn’t help my situation either. After much time, it was explained to me that I was probably dealing with “phantom pain” which you hear from people with amputations. Of course, I was familiar with phantom pain from Kathryn’s experiences with an amputated arm. Thankfully, this type of pain is not constant, but I did experience that sensation last night. Not fun. 

With GBS-AMSAN, my peripheral nerves have been damaged throughout my body impacting multiple diseases of nerves (Polyneuropathy); my damaged motor nerves which has lead to my quadriplegia, and as mentioned above, my autonomic neuropathy. Aside from my paralysis, the sensory nerves cause me the worst of my pain. Even the slightest touch or pressure to my body, the tingling is electrifying and it begins to increase the thickness of my numbness feeling. This translates into my arms and legs to feel heavier and the best way to describe it is that feels if my whole body is just humming as the electricity goes through my body. The numbness heaviness is like wearing a heavy weight on my arms or a heavy winter boot. I basically wake up in pain (a dull feeling of pins, needles and numbness), in pain throughout the whole day and I go to bed in pain. Not fun and have I mentioned there is no cure for GBS? 

As I lay in bed tonight (January 1, 2023) at 900pm, I know my legs are laying straight and my arms are beside of my body, but my left leg feels like it is bent sideways under my right leg and it feels like as my leg has fallen asleep. The numbness feels thick as if I have heavy high boots that goes up to my knees. From my elbow to fingers, the numbness is feeling so thick that it feels like I am wearing heavy gloves that is weighing me down making it difficult to move my arms even slightly. When the pain is at it’s worst is when the electric shock impulses goes into a joint - urgh the acute pain catches you and all I can do is close my eyes and breath until the pain passes. The electric shock impulses at the fingertips or toes - again I find myself closing my eyes and taking a deep breath while grimness look on my face. Oh yes my face. My face hasn’t escaped from GBS residual effects - I have partial facial paralysis which means my lower jaw up both sides of my face are numb. When I get tired or have talked a lot, that numbness gets thicker impacting my speech and my neck feels thick too. 

When the staff get me ready for the day it is basically the worst part of the day because of the pain. The texture of the facecloth sets the nerves into activity sending electric shocks throughout my body. Then my numbness gets thicker making the nerve pulses more acute. I do try to push through the pain so I can get into my wheelchair but unfortunately on some days the pain is too much, I resign that I just ask to stay in my bed for the day. Having GBS continues to provide me with many lessons or an empathy to someone experiencing pain all day long. An on-going lesson is learning how to “accept a situation which I now have no control over and to find ways to adapt” so I can still enjoy my daily life. I succeed on majority of the days to find a way that, acceptance and adaptation. It’s going to be a lifelong process I guess.