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LM: How did you first learn about Lipoedema and when did you first suspect you may be suffering from it?
CL: My education about Lipoedema and my suspicions that I may have it began at the same time. I had been struggling to understand why despite all my efforts to shed weight I could only ever lose it from my waist up. I had been told the cuff I had formed on my right ankle sometime in my late 30s was a “pedal oedema” and would disappear if I lost weight. Except it didn’t-after shedding almost 40 kg it was still there.
I always had heavy thighs and thick legs from puberty. One night I was extremely upset that I had continued swelling in my legs and researched and found Lipoedema. I saw my body in the photos looking back at me!
Initially my symptoms were mild. I was a clumsy child, I’d always have a twisted ankle or I would bruise easily. It would hurt to be touched, especially on my upper arms. I would find random bruises on my legs and early on my legs would cramp . I had no shape to my legs and no definition in my ankles and thick thighs. Looking back I can see my mother and grandmother had early stages, my aunt on my mothers side also shows signs as does my sister . None of them had or have been formally diagnosed.
LM: What are the main challenges that Lipoedema has presented from an overall health and lifestyle point of view?
CL: My main challenges are standing and walking long distances. I really miss cooking and photography as that used to not only be my career but a creative outlet. I miss wearing really cool shoes. I miss dancing. I miss spontaneous outings as I need to consider seating and accessibility .
Not long after diagnosis despite all my training as a Transformational Therapist I really experienced what is known as the dark night of the soul. I was grieving so much. The loss of independence was a massive change as I had always been the one who held everyone else together. I was a people pleaser and I felt I had let down the team. My mindset did not help my pain levels at all. I fell into a spiral of “well if I’m never going to be thin then I’ll just give up” - Not something that I would normally do but I just felt like I had let my body down, that I wasn’t worthy of love, that I wasn’t even worthy of life. I am not afraid to admit I was self harming and taking way too much over the counter pain relief. I was unaware how close I was to not being here until I had a moment where I was so over my own victimhood. I am so fortunate to have remarkable family, friends and an incredible GP Dr Nora Sadek who could see there was still a light inside me that could serve this community if I’d only realise that this was in fact a gift to me. I had so many tools from my training as a coach and therapist that I could utilise if I could only forgive myself and find compassion.
With that I began my way back by creating Carry It Well - the Body Compassion revolution that I hope with time will encourage everyone to embrace their chronic conditions and concentrate on celebrating their abilities. Taking part in the recent photoshoot reminded me of how much I have to offer in the way of self esteem, self love, self confidence and most importantly self COMPASSION and forgiveness that I hope to create some great content and tips that I know helped moreover come the “mourning” period so many women face after diagnosis.
I am currently noticing a slight progression of lipomas in my ankles cuffs as I progress into menopause. I am making some adjustments to my supplements, food and movement to make sure I am doing the best I can to stifle its progression. I am also determined to shift some non-Lipoedema weight with guidance from my GP and a dietician. I am 4 years into conservative management and I am always experimenting with different routines and regiments to find the most effective regime.
LM: What brought you to see Dr Lekich and what are you hoping to achieve in your Lipoedema journey from here?
CL: I came to Dr Lekich to confirm my suspicions that I had Lipoedema and to determine what stage I was at. I was also diagnosed with Lympho- Lipedema which made sense as I would occasionally have swollen feet . It was a relief to know it wasn’t all in my head. I was actually terrified that I would not be diagnosed and that my fat legs were just fat legs so it was a relief to know that this was not entirely my own doing.
I really hope to see a cure in my lifetime. With the current research it is looking promising. For me financially surgery is a way off unless the Government recognises surgery as life saving rather than cosmetic. Until then I will continue with my conservative management plan, watching what I eat, keeping as active as possible, connecting with allied health services as necessary especially physiotherapy, having regular MLD and when I can't attend I dry brush every morning and use my vibration plate, along with wearing compression as often as possible. I do find it a struggle some days.
I will continue to raise awareness and share my heart and soul on social media along with a book I have in the pipelines. I will be working on a self compassion workshop in 2022 that I will be happy to share with our Lippy Lady Community.
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