Moisturise, Moisturise, Moisturise

Hello there!

To moisturise my legs I've been using Vaseline's Aloe Vera Light Moisturiser. But recently I found Dr Organic's Moroccan Argan Oil Body Lotion ( to be excellent. It does have a strong smell however which may not be something you'd like.  But I actually like the smell.

I find that the moisture lasts more than a day. So practically I can miss a day without worrying about it.
But it is quite expensive at £7.99. But it is worth it.

Anyway, that's it for now. I'll write more later.

Bye!

Pain, pain and more pain

I haven't written anything lately mainly because I've been experiencing excruciating pain. The garments on my right leg regularly collect down to my knee. This causes the skin behind to sore and angry.  If left unattended become a graze or possibly a wound.

Well it became a wound quite quickly. So I had to get my big tub of Sudocrem out!

At work, it was regular and long visits to the loo.  Usually it is to let the wound out in the open for some relief. After 10 minutes then it is back to pulling my garments and getting back to work. Thankfully the folk at work are understanding, which helps a lot.  But the constant worry and pain has been giving me headaches.

I've been able to have a couple of lazy Saturdays, thanks to my family. This went a long way to helping the wound heal.

After a fortnight things are finally back to normal. Things are manageable now.

Happy New Year - Goodbye 2015 and Hello 2016 and Travel Tip!

Hello there,

It's been a long time since I wrote something. I always wanted to include a picture with every post but that has prevented me to write anything. So I decided to write without including pictures, unless they need it of course.

This new year, I was fortunate to spend it away from home. But staying away from home always poses problems. How could I ensure my legs are elevated? Could I even elevate them? Would the "hosts" like my peculiar requests?

So I decided to go "low-key" and wear my garments to bed. I thought that would be the most easiest and "unobtrusive" way of ensuring good health of my legs. I wouldn't need to bother anyone.

Normally I wear two garments on each leg, Ven Dur Level 3 and Goldpunkt Level 3. So I decided to wear just the Ven Dur as that gives the most effective compression at the lower leg and it is comfortable enough on its own.

After two nights - I have to say wearing garments to bed has been a success. So from now on, if I have to stay somewhere for a short period like one to two nights then I'd wear comfortable garments to bed.  I don't think my legs can handle days in a row in garments.

I hope that helps!

Thank you - Elaine Melsome

My utmost heartfelt and eternal thanks goes to Elaine Melsome, the wonderful lady (and specialist) who works at the Mount Vernon Cancer Centre in Northwood, Rickmansworth, UK.  I would say without her I wouldn't exist - I'd be in the hands of inexperienced doctors.

Thankfully I do not suffer from cancer.  She also suffers from lymphoedema, she is also a former nurse. After retraining she decided to run the Lymphoedema clinic with the proviso that she takes care of non cancer patients as well.  The treatment I get would have been, this will sound horrible, reserved for cancer patients only.

It is only because of her tenacity, courage, determination and enthusiasm that I get cared for by the clinic.

Just recently through some miscommunication I've been referred back to my GP from Mount Vernon. Through little fault of my own, I missed an appointment that I wasn't aware of.  Hence the hospital decided to criminalise me for wasting valuable resources.  Apparently I've missed four over the last three years, the letter that I received read like a criminal rap sheet.

They are simply not aware how much I value my lymphoedema appointments, they take planning and preparation to attend.  It just pains me that I'll have to jump through hoops again in order to get care from Mount Vernon again.

Welcome back to me...

Hello Me!

It's been a very long time since I last posted anything. I need to make amends.  I keep thinking that each post should have a picture of some kind and I suspect that has been hindering my progress and preventing me from posting anything.

So from now on I'll post things that won't have a picture and I sure hope you don't mind. There's a lot I need to say so without further ado. You'll be reading my first post back..

Travel tip - wiggle your toes!

Hello there!

This tip is for those who suffer from lymphoedema in their legs..
For those who are travelling (and not driving) - I found one of the most effective (and non-gimmicky) way to ensure that your leg is active is to simply wiggle your toes.  

You'll find that you can actually get tired of doing for five minutes or so but I've gotten so used to it that I can do it continuously for 20 minutes and more..  Seriously I've seen these contraptions that you can get that you do various things with your feet and legs but I found that this simple exercise is the best.

When I was 7 - a nurse told me to constantly wiggle my toes.  When I find myself in situations where my legs are still - I wiggle my toes.  I'm pretty sure that this tip has helped with the healing of various operations that I've had in my life..

Start wiggling your toes!

Travel tip - elevated mattresses

This is for those who suffer from lymphoedema in their legs.  Years ago my dad was always trying to find out ways to improve my life and he had the idea of keeping my legs elevated so that the swelling (now lymph) will subside naturally while I sleep.  At the time, I had almost given up living with my condition, I didn't like the regular operations and hospital appointments - I never gave much heed to his advice and ideas.  Plus we didn't know at the time that I had lymphoedema.

He and his friend decided to make a bed out of steel beams with reinforcements in the right places to support my weight.  My dad thought of adding a wedge of some kind at the end of the bed for the mattress to rest on.  He'd hoped that a slight elevation will help my legs. The elevation was about 10 degrees - a slope ratio of about 1:6 - I have to say it worked wonders on my legs.  Now I insist on having a wedge under the mattress on any bed that I regularly sleep on.

Therapists would suggest putting your legs on top of pillows, invariably by the end of your sleep you'd see those pillows on the floor.  Heaven knows what use they were and you'd notice no discernible difference to your legs.  Putting something under the mattress to elevate it the mattress is a much better and stable solution.

Nearly everyone in the world sleep on flat beds - so going on holiday adds to my worries on how I'd cope with my legs.  My tip would be to get anything you can get your hands on and put them under the mattress.  During my last holiday, I had stuffed several pillows, bed throws and cushions under the mattress.  This alone made me worry less about my legs and my legs were stable during the entire holiday.  I suppose the same sort of technique can be applied to help with lymphoedema in the arms.

To summarise - when on holiday, stuff pillows and cushions under the mattress to provide elevation for your legs.

My bed with the wedge

The wedge itself

I've discovered shorts!

Welcome back!

This summer I have discovered shorts!  You may be thinking what's so special about them.  I've never worn shorts since high school plus my legs weren't in a state I could show them off.

One of the problems that I have from wearing compression garments on my legs is that they usually slip down and when they do they can cause pain.  I have to find a toilet or a secluded room pretty quickly in order to pull them up away from my knee privately.

With the warm weather - wearing three layers of 'clothing' (two compression garments and trousers) was getting pretty painful and sticky.  My therapist suggested I use a water spray - basically spray it on the garments making them slightly wet. This helps my legs feel cooler.  This was all well but I still had the problem of the garments slipping down.

Whilst in Sainsbury's I eyed a pair of shorts, I just wondered what it would feel to wear shorts.  I mentally anticipated weird looks and stares if I had worn them.  Would people think my fashion sense had gone out the window?  Or would they think what's this fat bloke doing wearing black tights under his shorts?  Despite feeling and anticipating embarrassment and ridicule I decided to buy a pair.

Oh what a relief!! I wish I had bought a pair earlier! Now I can position the garments so they don't collect up at the knee.  I did get a few odd stares from the family but then I thought I'd go and show the world.  I guess you only live once...  I had a lot of weird stares.  But all in all people just got used to it seeing me wear them  I just thought they'd wear the shorts if they had to wear garments like me, but I wouldn't wish that on them..

Thank you - Schiebler

To begin - I need to thank a few people and companies that make my life better.  In no particular order I would like to thank Schiebler the makers of the compression garments that I wear.


Go to the Schiebler website to find out more about them.  It's to the fine people working there that there are comfortable compression garments available for Lymphoedema sufferers to wear.

Just so you know - this blog is not endorsed by Schiebler in ANY WAY!  Seriously - I'm just fortunate enough to wear their garments.

I could remember years ago when I wore some rubbery garments made by a company I won't mention that used to dig into my ankles and the cavity in my right leg causing undue distress and pain. Driving was a painful experience for me - the garments would eventually slip downwards and it would feel like someone is cutting my ankle and knees with a rusty knife.  Every now and then I would shed a tear because of the pain they'd cause me.  I knew without them I would have to endure much bigger legs and constant bouts of cellulitis.
I had months of prolonged open wounds that I cannot get them to heal.  I resorted to stuffing tissues and used long-distance calling cards to prevent the garments from digging in.  I used to spend hours trying to devise ways for them not to cause me pain and creating wounds.  My heart would skip a beat when in the evenings when I take the garments off to see a new wound despite my efforts to prevent them in the first place. 

But for now - no more crying of pain and worrying about wounds - I'd like to wholeheartedly thank Schiebler for improving my life and making it worth living.

There are more people that I need to thank - so stick around for future posts.

Unorthodox treatment 2 - The Karate Chops

During early 2003 weighing almost 24 stones I began investigating ways in which to alleviate my condition and make my life a little more comfortable. I just could not rest on "put your legs up and eat less salt" as being the ultimate advice to live my life by..
After trying out the zen chi machine and having bought a dud one - I knew that I had to give my legs some vigorous shaking (in some way) and I couldn't just do it only by jumping and walking, being 20 stones plus doesn't help, so I enlisted my brother-in-law to help with my experiment.

My brother-in-law practically has hands of steel and people enjoy his lovely head massages, including myself.  With me lying down, I instructed him to essentially perform sustained periods (continuously for 10-15 minutes) of 'hard' karate chops on my legs. After the chops - I'd place my foot on his shoulder and he'd 'roll' my legs side to side and then afterwards massage downwards. The chops and massage were 'hard' and at times discomforting - I would scream with pain but I realised that some discomfort is worth it in the long run.

I'm pretty sure that this really helped but I unfortunately I didn't document my progress. However I do think  together with this and the walking I had managed to lose almost 10 stones by the end of 2003.

Unorthodox treatment 1 - the Zen Chi Machine

During the early parts of my life - my consultants and pretty much all the doctors I came across had told me that I suffer from Lipodystrophy, which is essentially abnormal formations of fat.

In 1999, after numerous liposuctions and a major debulking procedure (Thompson's) - I was left with legs with hardly any change in size but with lots of scars, skin graft marks, some nerve damage and a cavity.  I am then told that I suffer from Lymphatic filiarisis, which is caused by mosquito bites (more on this on a later post).  One of the consequences of having this is Lymphoedema and in its worse case Elephantiasis.

In 2003, I decided to do something about my weight.  I thought perhaps my ailment could be diet related despite being informed that diets will have no effect whatsoever.  I was explaining my condition to a colleague, who was keen on alternative therapy, he then invited me to his house to try out his Zen Chi machine.  At this time I was wearing tracksuit bottoms almost exclusively for five years and my legs did exhibit the onset of elephantiasis.

After, what I remember, a nine minute session I felt strangely dizzy and energetic at the same time. After a night's sleep I realised that my leg had shrunken in size.  I now knew that either shaking or movement is key to my leg's health so I set out to get myself a Zen Chi machine and also to start walking (running was too much for me then).

Unfortunately, having paid for a 'real' Zen Chi machine I received an 'advanced' but flawed version of one.  The company refunded my money and said I could keep the machine but it wasn't any use to me - it was just too fast.  The 'real' Zen Chi machine is white in colour and has a mechanical timer based controller rather than the digital one.  Plus the 'real' one has only a single speed whereas my one came with 10 speed settings with the slowest one being about three times as fast as the speed of the 'real' one.

I could safely say that without that experience I wouldn't have been motivated to move about and as a consequence get slimmer and healthier looking legs.  Although they are not as small as most people's but I'm eternally thankful of having them.

If you do decide to get a Zen Chi machine - remember to get one with the mechanical timer and a single speed. But I'd only recommended it only if moving around is difficult..  Otherwise you should start walking straightaway...

Oh, before I finish I did not suffer from lymphatic filiarisis, apparently it was a popular prognosis which doctors used to describe how people get lymphoedema...

(I'm no expert in lymphatics or anything - I'm only disclosing what I found useful to me)

Daily ritual - Part 1

Hello there!

Every now and then I have a lazy day where I just sit in bed all day and not wear any of my garments on my legs.  I call them "tights" so from now on I'm going to refer them to as tights.

But pretty much for 99% of my days I have a ritual.

This part is the actual wearing of the tights - but before I do that I moisturise parts of leg particularly the knees and the top of my toes.  These tend to get dry pretty quickly.

I wear two tights on each leg.  All my garments are custom made by Schiebler they are based in Germany.  The light brown ones are called "Venn" and the black ones are called "GoldPunkt (Gold point)".  The brown ones go on first.

Here they are:

The Venn are level 3 (out of 4) and the GoldPunkt are level 3 (out of 5) - so my legs are pretty compressed.  Now you know why I like those lazy no-wearing-tights days..

Here are my sexy legs:

I'll talk more about my sexy legs later - I'm seriously lucky with the ones I have.  

See ya

Welcome

Hello there!

Well done for making it here. I'm so pleased.

A few things about me before we get started - I suffer from Lymphoedema.
A disease that affects millions of people and yet there is no definite cure for it. Thankfully with a lot of help, which will be detailed later in future posts, I have managed to keep my condition manageable.

My hope is to help others suffering from lymphoedema, I shall dispense with the few tips I have and provide insights in to my life in living with this disease.

Here goes!