This is a guest post from my husband Brett.

Today, 6th March 2019, is World Lymphedema day and most of you reading wouldn’t of ever heard of this, this includes myself until recently.

January 2019 was the time i finally got a diagnosis of a condition I have been suffering with for the last 8 years, since 14th March 2011. This is called Primary Lymphedema.

For further information on all lymphatic issues this website is a great reference.

Lymphedema (LE) has a primary and secondary status in the UK and this is how it is determined:

• Primary lymphedema is a rare, inherited condition caused by problems with the development of lymph vessels in your body.
• Secondary lymphedema can occur when any condition or procedure damages your lymph nodes or lymph vessels. This can be surgery, radiation treatment for cancer and infection. Infection is most common in tropical and subtropical regions and in developing countries.

At this time I had some swelling in my left ankle which I thought was a result of an injury from running, which i had just started to do. I kept an eye on this and a month later I still had it and now I was unwell. I had a temperature of 39.1c and couldn’t even get up. Lisa had enough and dragged me to the doctors who straight away said that I have cellulitis in my lower left leg and off to the hospital I went. (Cellulitis is a very common bacterial skin infection which gets extremely hot to touch and is very painful).

My condition got worse and worse and as I had been untreated for so long it was tough for the doctors to treat successfully. After 4 days I still wasn’t responding to IV antibiotics and daily I was visited by surgeons in preparation for amputation, as they where concerned it would manifest into a flesh eating disease and if it got to this the survival rate is very low.

They wanted to try one last antibiotic, as it was so strong I needed to be isolated into a separate room away from all the other patients. Thankfully we saw results in the next few hours and It was incredible how fast it worked. Leg saved and this was the start for a very long and frustrating 8 years.

Since that first episode I have had a ‘flare up’ 8 more times and the story is always the same. I either have a trauma to my left leg and this can be a cut, blister or even a bout of athletes foot and then the tell tale signs start. I get either very tiny red dots on my leg, extreme pain in my groin where the lymph node is swollen and fighting infection or a temperature of 39.1c – it doesn’t matter in what order I get these I always end up with all of them.

The picture below shows top left me cycling 45 miles and the remaining pictures are the four days that followed with me being unable to walk.

The trouble is the bacteria in my leg spreads so quickly I have a couple of hours to get to the hospital, but knowing these signs help.

I have had a break from flare ups from June 2015 – July 2018 and now it has started again.

I now had more than enough of this and decided to seek private medical advice and within a matter of a month I had the answer I have been looking for after so many years. The NHS really did their best in looking after me but as this condition is classed as a rare disease and disorder not many doctors or nurses know the signs or have the knowledge to treat it effectively. Every time I went in as an emergency, except once, they saw me quickly and treated me extremely well.

I was lucky enough to be seen by Professor Peter Mortimer at the Parkside London hospital in Wimbledon. He, without a doubt, changed my life with the explanation of my condition. The long and short of it is that my lymph nodes on the left side of my groin do not work and this causes the lymphatic system in my left leg to fail. Now I know what you are thinking is that why do I have primary and not secondary LE and the results of my tests showed that my right side groin lymph nodes are ‘weak’ as well so it was something I was born with and these infections have brought it to light.

Now having this condition I do have issues to deal with. I have to wear compression wear everyday and my leg swells to at least 50% more than it should.

The other thing Is that this is a condition not many people understand or have ever come across before and don’t have an idea of what the issues are so I will try and educate the best I can.

• swelling can come and go in a matter of hours or last for days
• it’s painful – not a sharp pain more of a big bruise when swollen
• the pressure it causes is unbelievable and feels like my leg is going to burst
• flying is not pleasant at all
• leg is heavy

They are the most common feelings for me.

Currently I am having my leg wrapped twice a week to control the swelling in preparation for a medical grade compression garment that I will have to wear for the rest of my life. I am also on medication for this.

To manage this condition I have made many life changes and this has really helped and these include major diet changes (no meat only fish), lots of veg , no dairy and lots and lots of exercise and I can not recommend this enough. The exercise has seen me, over the years, complete multiple sporting events as I will not let this condition dictate my well being or life.

The biggest difference is the unconditional help and support from Lisa (Fat Girl Fit) and her willingness to do anything to make me as comfortable as possible. I wouldn’t be able to do this without her.

Here is a guest post written by my husband after his achievement at the Outlaw Half in Holkham

Before I go into the race report I wanted to mention the following, take some time to really read the following for each discipline.

Swim: It’s OK to be last out of the swim.

Bike: It’s OK to use the bottom ring on the crank (granny ring as most cyclist know it as).

Run: It’s OK to walk on the run.

The reason I mentioned this is because everyone is always worried about two out of three of these. Most importantly you are on the start line and thousands of others are not and have not even signed up for it.

I finished my first middle distance triathlon, this is 1.2 mile swim, 56 mile bike ride and 13.1 mile run.  This is more commonly know as half ironman distance.  My finish time is at the end.

Swim – 1.2 mile

The swim was a bit strange in the fact that the water was not that deep, when standing it came up to my chest.  When I entered the water I was surprised to feel that it wasn’t that cold and this was at 06:30, after I found out it was around 19c.  The other thing was that everyone sunk in the mud at the bottom, it felt like I had moon boots on while waiting for the start.

We were off and it was hectic and all the mud came up from the bottom and you couldn’t see a thing, this cleared after about 150m, but I loved it.  It was an out and back swim and went anti-clockwise.  The only trouble I had was spotting the buoy’s, this was because the sun was coming up, I opted to just follow the person in front.

I knew the end of the swim was near as the water became cloudy and you could smell the mud.  Coming out of the purpose built pontoon OSB built I was surprised that I was not as dizzy as I normally am and I headed into T1.  This is were I transition from the swim to the bike.

T1

During this transition I took my time and prepared for the bike section.  One tip I was given was to have a couple of mouthfuls of full fat coke once out of the water, as it kills off anything you may have swallowed during the swim.  I gave it a try and was pleased I didn’t have an upset stomach like I have before.

Bike – 56 Miles

The start of the ride was on a hill that lasted just under 2 miles, this was to exit Holkham Hall grounds onto the public roads. Once on the roads the course was very undulating, it kept going up and down for most of it.  There wasn’t any major hills as such but there were inclines that just went on and on. 

As the bike is my strongest discipline I was very conscious of not going too mad.  I made an effort of not going over 200 Watts and tried to keep my cadence at 90 RPM.  This worked and helped rein me back in a couple of times I got carried away.

There was a few times on the course that it was fast to the point I was hitting 30 mph+ on the flat, I do believe this was down to my triathlon bike as well.  Nathan at Yellow Jersey Cycles in Billericay really did build an animal. Just to point out he is the only person I will let touch my bike and an amazing mechanic. www.yellowjerseycycles.co.uk get in touch if you need anything.

Coming to the end of the bike I spun my legs a bit faster to wake them up just before I entered T2.

T2

Entering Transition 2 to the cheers of my wife was amazing.  I felt good and was looking forward to the last part of this event.  Again I took my time and made sure I had everything I needed.

Before I left the area I noticed my friend Oliva who was part of a relay and was waiting to start the run.  I went over and wished her luck, she look surprised and said I was going the wrong way.  This did make me laugh as I just wanted to wish her luck.

Run – 13.1 miles

This was without doubt the hardest run I have ever done. It was disgusting.  The run consisted of 3 laps of a 7km loop, 3.5km of each lap was uphill. It was very hot as well. 

I walked a number of times and this didn’t matter as I knew at this point I would finish.

There were 2 feed stations every lap giving out water, flat coke, gels and other treats.

I did make myself laugh as I approached the 2nd feed station where I was offered a jaffa cake, straight away I said no and thought to myself you’re on a diet, then I snapped out of it remembered what I was doing so I had two.  I was laughing about this for a good few miles.

The thing that made the laps easier was that my amazing wife was there cheering me on at the end of each one and I stopped to give her a kiss every time.

On my final lap I felt good and kept with the ‘if I need to walk I will’ approach and this worked wonders. I approached the finishing shoot feeling great and to finish felt amazing.

This was the biggest event I have entered and I went in with the attitude of breaking it down into 3 events and not worrying about the next part until I was doing it.  It worked well for me.

My finishing time: it doesn’t matter, I finished and enjoyed the event.  I would encourage others to do this also.