Hello fellow lymphies! I am going to try to keep a very simple little blog as I am having real success with my le as part of a programme I've built for myself in the past few years, and so I hope that it might be useful to others to see what I am doing and how it is affecting me personally.
I have had le for about 20 years now, it came on when I was about 19, I was a very slim very active student with a 24 inch waist then very suddenly in the course of a year balooned up to a large size 22. Retrospectively, around this time I gave myself concussion from a nasty knock on the back of my head, and nasty whiplash too, and so this bad new neck alignment caused a nasty blockage in the back of my neck, pretty much the worst place someone with primary LE in the family could hope to damage. At this time we had no idea this condition existed. I got such a swolen neck I could barely swallow and it was so visible my GP clearly thought I had something very nasty and sent me for an ultrasound. But she didn't find the answer and so we remained purplexed until thankfully my great Aunt was diagnosed and passed this info on to my mum, and a diagnosis from Dr mortimer soon followed.
Little generally happened for 15 years after that, I struggled along with terrible fatigue, an older looking shadow of the person I am today. I feel like I lost of lot of years to the disease at this point. Thankfully somewhere in the lyphy fug I found my lovely gent I am with today. I worried myself about explaining the lymph, how could I tell him one day I would be huge and disabled, constantly ill, splitting skin. One day he said to me 'I hope you don't mind, but I looked into this lympheodema, and there is help you can get. You should have stockings, and I found a lady who does MLD locally, I would like to pay for the first session for you'.
And so our adventures began! And here we are down the road, 18cm smaller around the waist and a similar reduction overall with a little way to go to find the girl under the lymph.
I'm going to try to put posts here of what we are getting up to, and how its effecting, and that will be a nice record of where we are but also I hope it might be of some help to people looking for the next idea on how to move forwards positively with this condition.