I have two main physical disabilities that affect my everyday life. A summary on both is below. Hold tight: it’s a lengthy one!
Cerebral palsy is something you may see me talk about on this blog. Truth is, cerebral palsy is an umbrella term to describe several diagnoses that affect a person’s movement and co-ordination. Cerebral palsy is acquired due to a neurological (brain) injury, acquired before or soon after birth. Sometimes the cause of these injuries are unknown, but cerebral palsy is more likely in premature and multiple births.
The type of cerebral palsy I have can (confusingly!) be known as both hemiplegia or hemiparesis, but I usually refer to it as ‘hemi’ to keep explanations a little easier. Hemi affects one side of the body – usually one arm or limb – and can mean it is difficult to control the movements and coordination of the affected side. In my case, I have spastic hemiplegia affecting my right-hand side, where I struggle to use my right hand and arm – particularly my fine motor skills – and where my right leg has reduced movement and lack of balance when compared to my unaffected side. Spastic refers to involuntary muscle spasms of the affected side, and my affected muscles are usually ‘tight’ as the muscles have a higher tone. Spasticity not only contributes to a lack of coordination and movement, but can also be painful. I control the painful spasms with baclofen, which can help reduce spasticity and therefore ease the pain when necessary.
I have had many different treatments to help me to maintain mobility, improve coordination and soothe the painful effects of cerebral palsy. These include intensive physiotherapy, occupational therapy, neurological assessments, a tendon lengthening operation, splints, serial casting and the use of painkillers and baclofen. More detailed posts outlining my experiences of cerebral palsy can be found through the search bar.
Scheuermann’s Kyphosis or Scheuermann’s Disease refers to a condition that affects a young person’s vertebrae (the bones that make up the spine) where they grow unevenly, causing an abnormal curvature. As well as the abnormal curvature, affected vertebrae may have schmorl’s nodes, which are protrusions of vertebral matter that appear as dimples on the vertebrae. It is usually seen in the upper (or thoracic) spine.
What are the symptoms?
Most young people present with a rounded back, and a mixture of musculo-skeletal pain and neuropathic (nerve) pain. Individuals also deal with stiffness around the apex of their curve, and fatigue. Doctors were initially very dismissive of my pain, but there is more understanding in the medical community nowadays.
What are the treatment options?
This depends of the severity of the curve and whether there are neurological complications. My curve fell into the moderate-severe category when I was initially diagnosed, and although surgery was an option for me (more on that below), I was given a boston brace to wear 23 hours a day. This was eventually replaced by a more form-fitting brace. They were made of rigid plastic and the aim is to prevent the curve from advancing. Mine wasn’t really effective, and I found the whole experience very uncomfortable.
To find posts discussing my experiences of Scheuermann’s Kyphosis, type into the search bar to search my previous posts.
TW: mental health symptoms, talking about dissociation, flashbacks
For a long time, I was treated as if I had generalised anxiety and depression. As with many people, however, this diagnosis changed and evolved into something else.
A couple of years ago, my mental health conditions were re-diagnosed, and I have what is known as Complex PTSD (or c-PTSD). This condition is a result of multiple ‘complex’ traumas (as opposed to one, large trauma) that occurred over a period of time and in my childhood years.
At present, I don’t want to get into the details as to what caused this, but I will aim to explain how cPTSD affects me.
The term complex PTSD is a fairly new one, and is differentiated from PTSD as the condition is caused by multiple traumas that usually occur when the person feels like they can’t escape (so if they’re children or in an abusive relationship as an adult) and where they experience many traumas. This differs from PTSD, which is caused by a traumatic event rather than ongoing multiple events. cPTSD isn’t officially recognised in the latest DSM, but doctors are becoming increasingly more aware of this. It is not very easily treated, but there are a variety of treatments around to help manage the symptoms.
cPTSD has the hallmarks of PTSD in that people can experience flashbacks (auditory, visual), irritability and difficulty sleeping as well as others. But cPTSD has a profound effect on one’s perception of themselves, where they often have very low self esteem, or have suicidal thoughts. They may feel like they don’t belong, have frequent periods of dissociation and not feeling ‘present’, and may also cope in one or more of the following ways: flight, fight, freeze or fawn (I highly suggest reading Pete Walker’s work to understand this). Individuals also experience emotional flashbacks, where the person experiences feelings that happened during the time of the traumas, sometimes unprovoked or triggered by something that the individual associates with the past. Bessel Van Der Kolk’s The Body Keeps the Scoreis an excellent insight into this. cPTSD can have devastating effects on a person, and each individual is affected in a different way. In terms of how I experience cPTSD, I have a constant need to be busy or to be ‘doing’. I also have auditory and emotional flashbacks, dissociative episodes, very low self esteem, nightmares and poor sleep and OCD. The condition is intrinsically linked to everything I do and effects everything I am.
What treatments have I had?
I use a combination of medication and specialised trauma-focused therapy.
How do I try and manage my condition?
Working to improve cPTSD is a long, long journey, and I suspect I’ll be on this journey all of my life. I have a constant need to feel safe, and am working to make my environment as safe as possible. I am actively having to learn how to relax because I am always on edge, and am working to practice self-compassion. Keeping busy keeps me from having constant flashbacks, but it is not productive because it is masking my trauma and is currently an unhelpful and unhealthy behaviour. I am working on how to prioritise my time, and trying to learn how to self-soothe and criticise myself less. I am also trying to work on being more ‘present’ and grounded, but I spend a lot of my time dissociating or not really ‘here’. My older mental health posts can be found with ‘anxiety’ and ‘depression’ tags, but newer posts (from the publication of this page) will be tagged cPTSD, complex PTSD, CPTSD etc.