My Invisible Disease by Michelle

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When the invitation came to “Write your Story” as part of Lymphoedema Awareness month, my initial thoughts were ‘I don’t know where to start, it will be too long and boring, do I want to go over all that again’. It’s such a mixed bag – it has been painful, presented many challenges and also some good opportunities, like connecting with all of you now!

Long story short, I had endometrial cancer 13 years ago, I recovered and five years on I felt like I’d passed through the ‘danger zone’ and was doing fine. I went to some hot springs, got in to sooth a sore back and the next day my leg began to swell. That was almost 8 years ago.
I knew what it was because I’d been given a sheet of paper when I left the hospital warning me to watch out for signs of Lymphoedema. I just didn’t realise it could appear so long after my surgery.
What I have found out about lymphoedema in the last 7 plus years has taken determination, courage and a tenacity to not give up in the face of consistent messages that there’s no cure, your only options are DLT, MLD, compression garments, and don’t get bitten by anything!” Like probably most of you, felt reluctant to take that lying down and so started the long search! I did find other things that would help along the way, like hydrotherapy, rutin powder and a low carb diet, to name a few. I’ve also been assessed as suitable for LNT but at present the only surgeon doing this surgery in Australia is not comfortable with transferring to the groin, which is where they need to go to make a difference for me.

Which brings me back to, how do we stay positive and not give up when the doors turn into walls? Rather than go into the physical aspects of the struggle with lymphoedema what I really want to talk about is how it impacted me emotionally and psychologically. Just in case I’m not the only one🙂 First was the impact of realising that ‘I’ve got this thing but no one seems to know much about it’. GP after GP stared blankly when I said I had lymphoedema. I found a massage therapist who had been trained in lymphatic drainage massage and had developed a small business providing massage, bandaging, compression garments and creams etc. I had to travel 7 hours by car to see her. None of this was subsidised and represented a substantial cost upfront and ongoing. I wrote to Lymphoedema experts to see what else I could do. I ended up frustrated because the bottom line was, there was not much other than the standard maintenance therapies that seemed to work.

I recently asked myself, what is it about lymphoedema that makes it so invisible as a condition within the medical model? I’m not sure, but I’ve wondered if lymphoedema is seen as a blip in the otherwise positive story of saving people from cancer? Perhaps medicine doesn’t really want to acknowledge that a surgical intervention may have created something worse than what it was trying to cure. I’ve had people say to me ‘well, at least you survived’ and this is true but it’s not the whole story! And this is the main point I want to make, it takes an enormous amount of inner strength to keep moving forward when you’re left alone to find your own solutions, cover the cost of treatments and garments, deal with the constant worry of cellulitis, the sense of isolation from your healthy friends and wondering where will this all end, how will I manage old age? At times this has felt truly overwhelming!

One positive thing my GP did recently when I went into a mini melt down during a visit, was to suggest I have a mental health plan (in Australia this is subsidised sessions with a psychologist). At least mental health is subsidised! I mean, initially I was horrified. The GP thinks I’m nuts!!!! But the truth was that I was starting to sink under the struggle of being an ‘invisible’ person with an ‘invisible disease’. So I went along for a session and it turned out that this psychologist specialised in Mindfulness meditation. I signed up for an 8 week course and that made a huge difference to how I was coping. I still struggle at times but meditation gives me a reprieve, a place to let go of the struggle. I’m not saying meditation is for everyone. It seems there are as many things that help as there are people with lymphedema. The main thing for me really was to acknowledge that I was struggling and that I had become isolated. Having people who understand you is so important. Forums like this blog site are good for breaking down our isolation. I’ve come to see how important that is!

My hope is that there will one day be proper resources allocated to lymphoedema, that others will not have to spend years piecing together a picture of what will help them cope. I hope there will be good emotional support for those facing life with lymphoedema, more research and clinical trials of possible solutions.

In the meantime, it’s good to know you are all out there. I’ve been so impressed and inspired by people’s stories of courage on this blog site! By Michelle

Thanks so much Michelle for sharing your story with us prior to Lymphoedema awareness month.. Helen

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https://lymphnodetransplant.wordpress.com/ Thanks

5 thoughts on “My Invisible Disease by Michelle

  1. I had the LNT Deceember 14, 2015. Dr. Lee in Florida did the surgery great doctor. LNT replaced in my Groin.. The volume in my right leg before surgery 64.37% a month later 31.7%. and I have had Lymphodema for over 25 years. God has truly blessed me.

  2. Michelle, you are not alone. I am in the same boat with you. I don’t know anyone personally who has what I have. That is one of my wishes, to actually meet someone (or more) that it going through what I am going through. My second wish is for a cure! By the way, unlike you, I was not given a sheet warning about Lymphedema. I was told nothing. Mine came from flying across the world without a compression stocking. It would have been nice if someone had warned me of that. None of my doctors told me. (and I live in a cosmopolitan area!)
    Good luck to you!

    • Hi Pam … You are never alone we are all here to help and support… Where do you live maybe some one is near you?? I was given a bookmark when I left hospital but I did not take much notice of it as they did not say how important it was!! I went on a plane trip and had a sauna and that was it … Lymphoedema!!! It takes its toll both mentally and physically … Take care Helem

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