Orthostatic Tremor is a rare, progressive movement disorder that causes unsteadiness when standing still, due to a rapid tremor affecting the legs and trunk. The tremor is sometimes described as having ‘shaky legs,’ and it improves or disappears when walking, sitting, or lying down. This may cause people with Orthostatic Tremor to attempt to sit again or walk immediately after standing, for fear of falling. People with OT also experience tiredness, physical exhaustion, muscle stiffness or weakness, and pain. The cause and cure of OT is unknown. (National Institute of Health)
I have been living with OT since 2021 after the second stent was added to my aneurysm in March. Diagnosed in December of 2022. Every time I stand up, I feel very unwell, a bit like severe jet lag. After a few seconds of standing up, my legs start to (invisibly) shake, like a violent shiver, and after about a minute, my feet and legs start to cramp, and my back starts to burn and sting as I try to hold myself up and try to stop the feeling that I am falling.
OT is a constant problem that affects my quality of life. If I stand more than two minutes, panic sets in and it feels like I’m going into a panic attack. The feelings subside the moment I sit down, but it leaves me feeling totally exhausted and depleted, and I need some time to recover. Orthostatic Tremor is a hidden disability, and it comes with varied emotional, mental and physical challenges for me.
Emotional challenges cause me to often face emotional ups and downs due to the daily struggles and frustrations I encounter. I experience feelings of frustration, isolation, and sadness, stemming from my condition. Coping with OT involves managing the stress of concealing my challenges from others, fearing judgement or misunderstanding.
I often feel frustrated, annoyed and upset when trying to do normal everyday activities, like showering, getting dressed, making the bed, cleaning, cooking, dishwashing, doing the laundry, shopping, standing in queues, talking to someone anywhere, having a photo taken, taking a photo, trying to cross the road, walking slowly, help-your-self buffet meals, and even hugging someone can all prove difficult for me.
The challenges I face can make everyday tasks more demanding and that affects my confidence. I feel overwhelmed and sense a feeling of inadequacy when I struggle with tasks that others find easy.
Although my hidden disability may not be immediately apparent to others, it can still cause physical symptoms and limitations. I experience chronic pain, fatigue, and balance issues that impact my daily life and can significantly affect my physical wellbeing.
Living with OT I also face social challenges, as others may not understand the nature of my condition. I encounter skepticism, disbelief, or dismissive attitudes from those who cannot see my disability. This lack of acknowledgement can be emotionally and mentally draining for me, leading to feelings of isolation or being misunderstood. Because OT is invisible, it is hard for people to understand what is happening to me. I look ok, so those who are aware of the condition often forget I have it.
As time has progressed with my OT, I've become more sensitive to noise, lights, crowds and unfamiliar places, which cause me to feel extremely overwhelmed. It has changed my relationships with many friends and family, as often they do not understand the changes that are taking place in me. I find myself having to say "no" to events I want to be present at, yet I know how it will affect me, and how long it takes me to recover. OT often leaves me feeling anxious, frustrated and depleted, withdrawn, sad.
Symptoms are worse when I have poor sleep or I’ve overdone my level of activity, and pushed myself beyond my limits, and any kind of excitement can cause me sheer exhaustion. It just makes me hate my life living with this rotten disease!