Please introduce yourself – say as much as you feel comfortable saying about who you are, what your disability is [and whether it is acquired – and at what stage of life]
My name is Sommer, I am a 42-year-old, first time mum to a baby girl named Hayze. I live with a disease of the central nervous system called Multiple Sclerosis (MS) and also have a diagnosis of psoriatic arthritis.
I was first diagnosed with MS in 2015, following years of unusual debilitating symptoms and doctors’ visits that told me there was nothing wrong. Eventually, over a period of a few days in hospital, I became progressively paralysed down the right side of my body and diagnosed with MS.
Since 2015, I have fought the ups and downs of MS and its continual relapses, while navigating my way through government bureaucracy to maintain my full-time employment.
My career as a Social Worker/Clinical counsellor has seen my predominantly work with children and families. Then in more recent years I have engaged in social justice work for people with disabilities.
I am currently on maternity leave and enjoying my newborn baby whilst balancing life and MS.
Talk about your experience of disability as a daily experience – how you feel
I am essentially diagnosed with relapse remitting MS. Which is a term that quite often bugs me. Many people presume that relapsing MS means periods on symptoms and periods without symptoms. Unfortunately, I suffer from daily MS Symptoms that range from numbness, tingling, weakness, heat intolerance, migraines, bladder, and balance issues, (I could go on and on).
Navigating MS has been a journey of its own. I have now had multiple immunotherapy’s that leave me more susceptible to other illnesses and diseases. I have had to be significantly mindful of the risk of covid-19 for example (more so than the average person).
I have significant issues with maintaining my home, personal care and being able to continue to work full-time. But I’m also not in a position where I can just stop working. So, I find myself to be constantly battling to stay ahead or dreaming I would win lotto.
List up to 6 things arising from living with your disability that are a pain in the butt to you
#1- My right hand – only works sometimes. If I am tired, too hot, or just not having a good day my right hand simply doesn’t function. This can mean that I can’t write/type or even sign my name. I can have a massive tremor that results in spilling drinks and food (usually all over myself).
#2 – Travelling – Travelling used to be the activity that I loved the most. Nowdays, I have to plan weeks in advance and then I’m usually so frustrated at the availability of accessible accommodation and activities that I get fed up and cancel my plans. Hotels do not cater for my needs, airports/planes and transfers are a nightmare and now to add to the difficulty I have a baby requiring a pram and a million other difficult to transport items.
#3 – Baby Items – I have just discovered a whole new world of items that are not accessible to parents with disabilities. I literally need someone to help put my baby’s pram up and down, I need help with her capsule as it’s that difficult to get out of the car. Product packaging may be child proof, but it is also that not accessible for a person like me with a disability.
#4 -Having to explain myself over and over and over again. I recently took a secondment role where I clearly noted (time and time again) that I could only work from home due to the distance/location of the role, my MS and affiliated complications. I gained the role and then spent the next 12 months continually rejecting the request to come into the office and continually explain that I would not be able to travel due to my health.
#5 – People comparing their experiences of fatigue to my MS fatigue. Not the same thing! Full stop. Don’t argue with me! The number of times people have commented that they are tired and understand my fatigue and compare their own fatigue to mine. The most frustrating and insulting conversation.
#6 – Dealing with the NDIS. The most inequitable yearly experience I have to endure.
Is there an upside to living with your disability? Feel okay about saying no.
No.
What one thing would you like the reader to understand about living with a disability
That having a disability is hell. If you or your support system are not able to communicate your needs and be heard – you will be 1000% lost in the system.