Neuromuscular clinics provide specialised care for neuromuscular
conditions, including SMA. Coordinated care through a
neurologist is recommended, and SMA clinics offer proactive care.
Personal stories
Strengthening your ‘You’ve got this’ muscle!
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Posted by: Michaela
“Hey hey, I hope you are all doing well. It’s me, Michaela – back to strengthen your ‘You’ve got this’ muscle. I want to tell you about my big fat leg. Why do I call it this? Well, because it’s huge and it’s the only thing I dislike about my body.
To give you some background, I have recently dealt with my foot becoming quite deformed as my bones aren’t as strong as others and are significantly smaller. As a result, I sustained three breaks in 2020 – in my hip, knee and ankle. In doing so, I relocated my dislocated hip of 10 years and with it began a journey I never expected with lymphoedema.
This change has been far from easy, and I’ve cried many tears about it and what it means for me –including how my socks and trousers no longer fit.
This led me to have a heart-to-heart with my long-term support professional who worked with me prior to my deformity. I explained that I was struggling with her practical mindset; that my existing clothes wouldn’t stretch enough, so they wouldn’t fit my enlarged foot/leg. It was great that she understood me and ended up seeing my frustrations as an opportunity for her personal growth and a way for her to adapt her approach with me.
Unfortunately for me, and sadly from her perspective as well, things were as bad as we thought. A lot of my former clothing no longer fit or stretched past my foot, including my beloved track pants with tight cuffs.
As this problem became more apparent, my support professional and I decided to seek assistance from a seamstress in attempt to find a solution to adjust some of my clothes, and we both figured it couldn’t make things any worse. However, to our dismay, the seamstress stated it would cost $80 to adjust any clothing and that the style I desired would not be possible.
This may not be the experience for everyone, but it left me feeling quite shattered, and my support worker also felt bad as she had initially suggested this step. In addition, I was embarrassed that I’d expressed this problem and already gone this far looking for an answer through the seamstress – only for us both to realise it wasn’t going to work and we would need to go back to the drawing board.
I then decided if I can’t wear socks, maybe I’ll still find some suitable shoes. I really wanted a particular brand/style, but when I asked, I soon became aware they are a narrow fit and would not be wide enough to place my foot in. But as I turned to leave the store feeling disheartened and with no outcome, to my shock I sighted a pair of trackpants that might fit me!
I have personally stretched a million trouser cuffs in 18 months, but despite them all being too tight I wasn’t willing to throw away all hope. I am far too stubborn for that! So, to my absolute amazement, this single pair of trackpants were on a sale rack in my size and height, and the foot was stretchy enough to wear!
Keeping in mind that when I recently asked other brands for assistance to make more adaptable clothing that could fit my left leg, the measurements were overly complex: Waist: size medium; Legs: size large; Length: extra small, with left leg circumference of 17 inches. So, you can imagine I was even more ecstatic to see the tag on these trackpants I had found stated they were regular fit! I was so pleased that a major brand had made a pair of trackpants that worked for me and they were available in a regular store.
So, when life feels hard, or if you feel down by not being able to wear what you want, trust me you will find a win. For me, that was a regular fit. While this was not an overall solution it was a light at the end of the tunnel for my quest to find suitable clothes that I enjoy wearing. This is something that’s important to me and reminded me to tell myself ‘You’ve got this!’.”
