Treading Water

The transition from my ‘Lympho-mania’ state continues and it has become ever-easier to resist the cacoethes. The immediate and churning emotional response of a month ago was temporary; let’s face it, it was just too draining to keep up indefinitely and it was never going to be something that I could endure for more than a brief time. It was clearly sink or swim time and I’m glad to report that I am gently treading water quite happily. In fact I’ve reached a surprisingly contented place.

Patience has never been one of my virtues but one thing I’m exceptionally good at is following a plan. If I was completing one of those personality questionnaires where I had to select words to describe me, meticulous and its many synonyms would feature prominently (fastidious, painstakingly precise, rigorous to the point of obsession, are just a few adjectives that have been levelled at me in the past!). Not for nothing does my Coach refer to me as ‘Robot’ – I have a knack at doing everything exactly as instructed. That’s not to say I’m a rote automaton; I need to understand the whys and the wherefores first, but then I can take on a task and follow it to the letter. This has been a life-line in the past three weeks and has almost completely removed emotion from the equation; life has been easy.

Training cycle №1 is over. For the number-nerds reading this, some figures for you; training hours have come out at 15:35 in week 1, then 16:20 in week 2 and, a finally 13:20 in what was an easier week 3. Associated weekly Training Stress Score (TSS) is 915, 900 and 769 respectively. I finished this 3-week cycle with a Chronic Training Load (CTL) of 98.1. The target is to maintain CTL around 100 during this 12-week testing phase, so Coach is doing well in her role of managing the bigger picture too!

Levels of anticipation are high as I embark on the next cycle. This means I can add the next layer of ‘lympohoedema management’, and all the exercise that I do from now on will be with the added benefit of full compression on my swollen leg.  Two of the four cornerstones for treatment of lymphoedema are compression and exercise, and I’m genuinely excited about combining these on a full-time basis. Up until now I have been wearing full leg compression for recovery and compression socks during exercise, but not both together. It is my expectation that we will see a clear improvement and I hope to be able to report good things in the coming weeks.

As an aside, I’ve also got a truly thrilling prospect in the pipe-line, so watch this space for a special update in the next couple of weeks.

Clean surf – becoming balanced

“Clean or glassy surf is a smooth water surface with aesthetically balanced waves”

What I hoped to acquire in the last week was equilibrium. The plan for managing my lymphoedema was in place, and all that I had to do was be objective and stand back from the emotion. For the most part, this was achieved and I have enjoyed a satisfying or ‘aesthetic’ calm. Two weeks of the twelve week testing period are complete and we have obtained some decent baseline measures. Training stress, although high, has been kept constant and at a level that is sustainable for this 3-month testing period. I am shattered and at times feel shrouded by a web of fatigue, but all athletes will testify that these efforts do bring rewards and most of us subscribe (much to my father’s chagrin) to the adage that “what doesn’t kill you, makes you stronger”.  

A formidable task, and one that I will have to deal with for another week, has been keeping to the minimum techniques for controlling my leg swelling. When we were planning the testing protocol, Coach Helen probed to see if I could endure the first three week period completely devoid of ‘lymphoedema-management’, working on the principle that we introduce the training stress and see how bad the reaction was. Now, I can see where she was coming from, and for academic rigour I fully understand her asking the question. However, we both knew in our hearts that this would put an unhealthy strain on my mental resources, and agreed to compromise on certain ‘baseline’ methods. This has meant me holding back on controlling the edema. I can’t deny that there have been times when I’ve not wanted to do it the precise way and be patient, it’s tough knowing that I could be doing more to reduce the swelling and yes, I’ve wanted to snatch at things to make it better straight-away. But, it is in my nature to be meticulous and I have managed to keep to the plan. That is the most satisfying part; thankfully my state of equilibrium is stable, so when I have a wobble, I am able to return to a restful and pleasing place.

Funnily enough it has been the exogenous factors that have knocked me off my ‘floater’ this week. By word of mouth, more and more of my circle of friends have been drawn to this blog, and have found out for the first time what the true extent of the condition is and how it has affected me. Their outpouring of sympathy and kind words has been truly wonderful. In fact some special people have been so genuinely upset for me that I felt a bit of a fraud! Maybe because writing this blog has become a cathartic release for me but I was overwhelmed by the response it provoked. It has been propitious as it has made me realise how paltry my condition is in the bigger scheme of things; it’s not serious, it’s not life-threatening, ok it may be life-changing but it is really just a nuisance, nothing more.  This is how I feel when I’m floating the clean surf.

That’s not so say that I haven’t also had a petulant episode in all of this and my confession is that I lost it while out on a recent group cycle ride. It might be going too far to say I’m a loner, but I’m pretty self-sufficient and never feel the need to train with others. For whatever reason, though, this weekend, I decided that I’d join in with an organised ride around Sussex. Mistakenly I thought it would be nice to have some company for a change. As we cycled and rotated around there was plenty of time for ‘small talk’; all the standard questions, how’s training going, when are you racing, are you going to Nationals? It really forced home to me that I didn’t want to explain my situation anymore; I didn’t want to relive it all again and again and again.  I guess I’d got into a pattern where I wrote about it and then buried it! The more I clammed up and gave monosyllabic responses, the more questions it solicited. By the end I wanted to shout NO, NO, NO to the questions, no I really am not racing, no I really am not going to Nationals, don’t you realise I’VE GOT LYMPHOEDEMA...... It wasn’t the fault of my fellow cyclists, how are people who are just acquaintances supposed to know? But, it was a rude awakening for me that there are factors outside of my control and that every now and then I’m going to be knocked into the ‘soup’ of churning waters of emotional wave activity. In hindsight, perhaps this is just as big a challenge for me? A salutatory lesson that this is a long journey that I’m only just embarking on.

A Zen state of mind - conquering the fear

“In surfing, when wiping out or being held under for a long time, prudent advice is to relax instead of fighting against the churning white-water. This can be an effective way to ward off mental panic.”

This is what I have tried to practise in the last week. Prior to that, with so much information flooding in it had been difficult to keep my head above water. I was drawn into the melee, thrashing around, trying to grab at every lifeline, every hope of defeating ‘the swell’. I didn’t want this to be happening to me, I didn’t want to deal with this for the rest of my life and, yes, I felt the panic rising.

Guides, pamphlets and DVDs covering lymphoedema management and self-help exercises dropped through the letter box onto the mat, and there I was, like a waiting hound, sniffing out all the information I could. I spent hours scouring websites, researching products, snatching at any techniques I could that might make ‘it’ go away, all to the point of obsession. I guess this response is not unusual, certainly it’s a characteristic that I have; when a dear school friend of mine died of cancer in her late twenties I spent two years thereafter devouring every book I could find about death and dying so I could rationalise how I was feeling!

Luckily sense started to prevail; I was wearing myself out and my poor partner was bearing the brunt. She even christened it “Lympho-mania”. I’m a great believer in fate and in the last two years my life has been enriched by my cycling buddy, Coach and on-hand Buddhist, Helen.  She was the one that came to the rescue.

I’m sure she could sense the unhealthy energy and duly set up a Coach-Athlete meeting, ostensibly to chat over ‘Competitive Goals for 2011 and Lymphoedema Management’ but more probably to get me onto a steadier emotional path. Over latte (soya, decaf for her, the full-on caffeine blast for me) we devised a plan. I relaxed, the emotional waters stopped churning and suddenly blue skies and bright sunshine were visible again.

 There wasn’t any rocket science in our plan; although as with anything to do with Helen, there is always scientific rigour and discipline (she’s almost as much of a maths head as I am). We listed my first goal as the HotChillee organised London2Paris event in June (www.londres-paris.com). (My 2^nd is the UK National Hill Climb competition in October, but more on that another time). 23 weeks between then and now; 23 weeks to control my condition and get me in peak form for riding 520K over 3 days at an average speed of 33-36 kph. Clearly the number one priority is to control the Lymphoedema, but what exactly does this mean. Well, we aim to find out. We have designated a twelve week testing phase, comprising of 4 blocks of 3 weeks. Keeping my training stress pretty constant throughout this period, we will introduce a different ‘management’ technique in every new block. We aim to quantify and document which work, and which don’t. We are in week one of the first three-week cycle and while it’s hard to hold back and not grab at techniques that I firmly believe will help now, at least this way I have a systematic plan to follow. And at the end of the 12 week period we will have a much better handle on controlling ‘the swell’ and will know for sure rather than just guessing. Then the fun can start; 11 weeks of building my fitness for London2Paris.

A New Year – A New Challenge

What’s so new about this? Loads of people will have greeted the start of 2011 with good intentions, new goals and fresh motivation? Every amateur athlete knows how this feels; we all do it every year. Driven to achieve, we set ourselves bigger and better challenges. For me, this has taken on a different hue though as on December 14^th, after 18 months of intermittent swelling in my right leg, I was diagnosed with late-onset Lymphoedema. 

This is a condition that has no cure and if you really want to see the alarming consequences, just Google “lymphoedema” and click on “images”; I scared myself senseless doing just this.

The report of the lymphoscintigram scan that confirmed the diagnosis added to my fears, words like ‘grossly abnormal’ jumped out the page at me, as well as the additional blow that my left leg was also at risk of developing oedema at some stage in the future.

This blog is my journey, how I am dealing with the initial diagnosis and, over the coming months, my experiences trying to navigate the choppy waters of finding information, sourcing help and developing coping strategies. Some of you may find it helpful to read my story if you too are coming to terms with Lymphoedema, some of you who’ve gone through this may be able to help me, and others may just be curious.

A bit about me; I’ve been a competitive athlete for many years, a runner turned triathlete, turned marathon runner, and now re-invented as a cyclist when in 2007 an Achilles injury put an end to my running days. I don’t mind saying I was pretty good, as club athletes go, and have stayed competitive even well into my forties. You can see from the photos that I’m slight and in the last 20 years my weight hasn’t fluctuated much from an average 53kg. To be frank, yes, I have a strong fixation with body image, what athlete doesn’t?  This is the real heartbreak for me. I hate the thought of getting fat, I hate that I can’t conquer the swelling in my leg, and coming to terms with this is where my struggle will lie.  My performance has also tailed off in the last season, an additional blow. Nevertheless, exercise does help and if I had to choose between an ailment that meant I’d have to give up training or one where activity is encouraged, it’s not hard to work out which I’d opt for. 

The first day of the diagnosis, I immediately took positive action. I’d been told that exercise and compression were the best ways of controlling the swelling, but I was already doing both of these. Obviously the compression tights I was using were not powerful enough. I needed help and a good friend of mine, Simon at the TriStore in Eastbourne, was the first to the rescue. He recommended Zoot (www.Zootsports.com) compression recovery tights that are medically designed and boast a graduated degree of compression from 30-35 mmHg at the ankle to 18 mmHg at the waist. A swift order was dispatched. At least I felt I was doing something.

The second day I descended into an emotional well of self-pity. I alternated between anger and depression. Not a pleasant day.  Even rationalising how much better off I was than many people around the world didn’t help. I just wanted to feel sorry for myself.

The self-loathing didn’t last long though and with the help of my buddy and cycling coach at http://www.pbscience.com/, Dr Helen Carter, we started taking other lines of action. She made contact with experts in the fields of competitive cycling, sports science and medicine to see if there were other athletes with this condition. I started the process with my GP for a referral to my local Lymphoedema clinic and joined the Lymphoedema Support Network (LSN); a London based charity run by people who live with Lymphoedema that is the largest information provider about the condition in the UK. I signed up for every factsheet that I through relevant! If you’re interested, find out more here, http://www.lymphoedema.org/Index.asp.

Things got better when a few days later the factsheets from the LSN arrived and the tights from Zoot made it through the post despite a virtual standstill of deliveries caused by the worst winter conditions the UK has experienced for many years. It was quite a feat to get the tights on, but the difference they made straightaway has given me hope (thumbs up to Zoot, your tights DO live up to your marketing hype). Another friend, massage therapist Tracy, has helped to shift the swelling, and although the effect of this is temporary, it is sort of under control. There are still bad days, and I need to learn so much more, but I’ve taken the first baby steps in coming to terms with this horrible condition, and I’m sure not going to let it beat me. A new challenge but one I am equal to.