Guest post: What It’s like Living with Stiff Person Syndrome by Amber
Hello. My name is Amber and I am excited to be able to share part of my story with you. My husband Shawn and l live in the beautiful state of Oregon. I love photography, all things vintage, thrifting, kayaking, all things tea and going on adventures with my husband.
I have been on a 13-year healing journey all stemming from an auto collision in 2006 when my father, his girlfriend and I were going salmon fishing at the Oregon Coast. We never made it. A dump truck pulled out in front of us to turn around on the freeway.
It has definitely been a long journey and I have overcome many different diagnoses. I have not worked since 2008 and I have been on permanent disability since 2011.
In this space, I would like to share with you my most recent diagnosis called Stiff Person Syndrome. Prior to the diagnosis, I had never heard of it. It is a rare acquired neurological disorder, a one in a million diagnosis. The exact cause is unknown. Stiff Person Syndrome is believed to be an autoimmune disorder. For more information visit: https://rarediseases.org/rare-diseases/stiff-person-syndrome
My new primary doctor is in Siletz, OR so we end up going to the beach after the appointment to process all the new information and spend some time together as we head back home.
Everyday Life with Stiff Person Syndrome
I deal with chronic widespread pain, fatigue, stiffness and mobility issues. When the fatigue becomes worse I experience mobility issues ranging on a spectrum of one leg dragging, shuffling both legs, trying to drag both legs across the floor to not being able to take any steps, stand up on my own or move at all. I get stuck and can’t take any steps or move. I have no physical energy to move. Extreme stiffness of my spine, legs and limbs accompany the pain and mobility issues. I also deal with noise and visual sensitivities that increase all of the symptoms. Physical fatigue and brain fatigue, “brain fog”, also play a big role.
When I am at my worst I often find it takes extra effort to speak and to breathe in and out. I don’t have enough energy to talk. It physically hurts my inner system to take in breaths and to breathe back out. When I am at my worse my husband has to help me move to the bathroom and then physically lift my legs into bed. After lots of rest, I return back to my “normal”.
I have learned to ask myself “Is this worth it?” when deciding on attending social events or outings with family and friends. At this point, outings with friends are very limited or rather non-existent – unless you count my husband (as my best friend). When I am having a better day we like to be out in nature and go on little adventures. A lot of my friendships are now with new friends through online support groups. I do have a couple of longtime friends who occasionally check in on me.
Family is very important to me so I try to attend holidays, birthday parties, family gatherings and events like my little niece’s Tee ball game no matter what, knowing I will have to rest the following days and have increased symptoms. I am getting to the point however that I am unable to host family and friend get-togethers as I used to and have loved to do. The worth-it question has to be asked because any time I choose to leave the house or participate in an activity I know that I will pay for it later. This is known as Post Exertional Malaise (PEM).
Every day I wake up I feel unrested and in pain. I have learned to take inventory of symptoms, regroup every morning and go from there. If getting up to go to the bathroom and I physically can’t walk or my walking is slowed down I know it is going to be more of a resting sort of day or a stuck in bed kind of day. If my walking is my normal, I know that I can be up and do more things around the house. I also have to take into consideration the fatigue and brain fog.
I practice a technique called “pacing” where on better days I am up for 90 minutes and then I set a timer and do a 30-minute undistracted rest break. No phones, laying down in a dark room. This doesn’t take the pain away but it definitely helps stretch out the little energy I do have.
I’m mostly housebound during the week while my husband is at work. I try to stick to a routine and I have found out the routine can happen early in the morning and if I have to be in bed longer I can still do the same routine in the early afternoon. I live my life on a day to day basis. Taking one day at a time. I do enjoy alone time but isolation is a big factor in the lives of those who live with chronic illness. Especially if you are caught in a flare and have to spend more time in bed than usual or are unable to get out during the weekend for a change of scenery.
Life Before Chronic Illness
Prior to dealing with a chronic illness, I was very independent and rarely asked for help. I was able to do everyday tasks around the house and grocery shop on my own. Now I have to set boundaries on household chores, do a little bit and rest in-between. I am unable to grocery shop on my own. I use a wheelchair in big stores and if I have the energy I use a walker in smaller stores. The bright lights, business and all the people instantly increase all of my symptoms.
My husband is my sole caregiver. We go to stores together or he goes on his own when I am unable. He takes excellent care of me on the flare days when I am stuck in bed. He is amazing and so patient. My mom is also available to help when needed and helps in various ways.
I used to be a dancer, I grew up dancing. As an adult, I was still taking tap classes prior to the auto collision. I am unable to dance now. I’m a doer by heart so living with a chronic illness has taught me to slow down and enjoy the simple things in life. I have had to discover the little things in my life that spark joy and keep them close to me.
Looking back before my chronic illness journey began, I would have taken more advantage of getting out there and experiencing more of the world. For me, this would be local and world travelling. I live in Oregon so there is so much to see and do here nature-wise. Locally, this would entail being out in nature. More camping, hiking, discovering all the parks, waterfalls, trails and beauty that is out there waiting to be discovered.
The ultimate thing I wish I would have known before is that this is going to make me grow in every area of my life. This is going to bring change. I am going to become stronger in my faith. My trust in my God is going to grow immensely and that I am going to make it through some pretty crazy situations. I am going to develop a backbone for when things don’t go as planned that prior to I would have broken down and cried. I am going to grow in perseverance and experience a peace that passes understanding as I endure the seasons of waiting and the unknown. My journey is going to make me more compassionate and kind towards others. I am going to have a deeper desire to help and encourage others which led to starting a blog. Ultimately, my ongoing story is going to help and encourage others who are going through similar situations.
Thank you to Georgina for allowing me to share my story and what it is like living with Stiff Person Syndrome. To keep in contact with me or if you have any questions feel free to connect with me. I would love to hear from you. My blog is www.makingitthrough4110.com and you can also find me on Instagram (@makingitthrough4110).
Love and Prayers ❤
Learn more about Amber and Stiff Person Syndrome
To read her full story: http://www.makingitthrough4110.com/2017/12/my-story.html?m=1
To read the year that led up to the Stiff Person Syndrome diagnosis: http://www.makingitthrough4110.com/2019/05/the-story-continues.html?m=1
Stiff Person Syndrome seems very similar to Fibromyalgia. Read Stacey’s story about living with Fibromyalgia to see how.