Hello lymphies!

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.

5 Replies

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  • Oh so glad you found a lovely man who saw the real you and loves you. Good luck with the blog!

  • As I am desperately trying to lose weight as I am a size 18.

    How did you lose the excess weight around your waist.

    Could you please share any diet tips or exercises with us please.

  • Hi Alfie19

    I am going to try to note bits as I do them, because I have tried to do big long posts before about all the things I do but I'm sure I still forget stuff! So hence deciding to try to post it a bit as I do it. I was kind of given the 'diet' line by even people I really respect about the disease but honestly for me it is lymph so I have found over the years eating well can stop the lymph going ON, but no amount of starving will make it come off. It has to be removed. Please let me be clear about that I am talking about lymph around the tummy, if there genuinely is fat there on people what I do may well be void in terms of helping you as going on a reduced calorie plan etc of course would then be very effective. Basically I had a CT scan on my tummy and so we became confident the material that was actually there, and so were able to finally in this last year make progress in tackling it.

    In terms of tummy lymph then in short my programme here is Pilates, and standard crunches planks etc, moving the muscle 'pumps' the lymph, and also I find the breathing helps open the cluster of nodes just under the bottom of the rib cage. If I miss this for too long a period these all get blocked and I find eating and breathing hard (!!!). Swimming, I do synchronised swimming which is like pilates in water so I have shockingly strong core muscles. The pressure of the water also moves lymph. I say no calorie controlled diet makes a difference, but I would say don't eat bread, just make it for special occasions a treat. I had a compression garment from the hospital but honestly I found the lymph could pool behind it as the waistband was the tightest bit, so now I use cheap overly tight control wear from high street shops. Asda do some great stuff I have a nice pretty corset type all in one thingy from them, about £12 I think! I went doen several sizes by wearing jeans which were too tight, after a few weeks it's pushed the lymph off! You see now what I mean this advice is no good for traditional fat, no amount of tight jean wearing will make the average person slim! For all of these things SLD is VITAL as is going slow, or I end up with 'my ass round my face' I laughingly call it, i.e. my neck gets blocked with all the lymph coming off me! Always remember it all has to exit to here.

    Its a little frustrating really because it goes to show and prove that if I had wrapping or something 20 years ago I would not have been this size all that time. Would that mean I had not become diabetic now? You have to wonder. NHS priorities alllllllll wrong, there is no saving by not treating lymphoedema.

  • Will look forward to reading your blog

  • Thanks Suzie Danger Girl

    I am now a size 20

    Tried numerous diets ie: Slimming World lost half a stone but expensive

    Cambridge Diet helped lots of vitamins but got fed up with shakes

    had to tell myself they were doing me good after a year weight started to go back on as I started to eat the meals I had missed the Fish and Chips once a month so I really need to watch what I eat. I find it painful to walk due to swelling in foot and ankle even when wearing compression stockings and

    the weight does not help I know but I am fighting a battle everyday and I get very low when I get depressed cos it is never ending having had this illness all my life I am now 61yrs I feel my body is giving up on me so perhaps I should not fight anymore and accept the problems so that I can lift the depression.

    At times I do not know what to do for the best.

    At least having my legs elevated I can watch TV and knit or do colour therapy or give support to others.

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