Just beyond Dinas Mawdwwy in the north of Wales, nestled at the bottom of a great sloping hillside there is a beautiful quaint cottage. Surrounding the cottage, acres of green bracken punctuated with grey mossy rocks and arching trees can be seen from the kitchen through it’s rustic stable door. A huge fireplace warms the house through, though you need to be careful not to bash your head on the low hanging beam just above it.
In my very first few blogs of Left Leg First I described the nasty encounter I had with cellulitis last summer. The cottage described above is that same cottage I retreated to upon being discharged from hospital. It’s a very special place for me and for all my friends and we have visited it every year for the past decade. It’s a peaceful place full of character and every piece of furniture seems to hold a different story and a different memory. The mugs hanging from the rack never seem to change. The beds creak and the cupboards are full of dusty boardgames with clues to answers I’ve rarely heard of. A freshly brewed pot of tea always sits on the table and muddy boots, damp jumpers and raincoats hang in waiting by the door.
Trips to Wales focus on quality time together through shared meals, bottles of wine, bonfires and of course, long country walks. Traditionally, we start our day with a fry-up of epic proportions. This year, fifteen of us headed to the cottage making breakfast comparable to a royal banquet. More recently, we introduced a fancy dress theme and this year’s theme was genres of music. Naturally, I chose Glam Rock, smothered myself with makeup and donned a long black wig.
For me, Wales 2018 was the first time I had visited with an understanding of my lymphoedema. The year before I was fresh out of hospital so everything blurred into one hazy weekend and the years prior I neglected my leg completely as if it didn’t exist. I still had an incredible trip, as always, but it was different this time because of my leg and how I now choose to respond to it. Things that I have always done in and around the cottage suddenly exposed my lymphoedema which was a strange thing to experience. From the big things to the small, my leg often sat at the forefront of consideration, poking my decision-making and dictating the state of play. I’ve learned over the past year to work with my lymphoedema, not against it. It’s not actively trying to ruin my experiences but it will do if I act as if it isn’t there.
What that does that mean? It means I now weigh up whether doing something is worth the pain in my leg. Perhaps it would be smarter to skip the activity? Perhaps it would be smarter to skip the activity but not worth missing out on the fun? If it is worth the pain then I tend to be comfortable with it, not annoyed, as I myself knew what I was getting into.
However, it gets a little more complicated than that. If you have lymphoedema you’ll know that one of the most common triggers of pain is merely standing still. You’d be amazed how often you are stood up in a remote cottage in Wales. Now not only was I balancing the activities that were deemed fun or unmissable (like darts or walks), but also the activities that are mandatory. Washing up, sweeping the floors, cooking or laying the table i.e. anything remotely helpful. To those on the outside it can look like you are “happy to have a leg that works when it suits you”. You can stand up and play darts, yet you can’t make a round of tea? You can go for a long hike, but yet you don’t help with the washing up? These are the kind of thoughts that pinged around my head every single hour. It comes to a point where you are almost exaggerating the pain in your condition just so people don’t question your motives.
The strange thing is these are my childhood best friends. I’ve known them since the age of ten and i’d trust them with everything and anything. However, I still feel guilty for enjoying myself. As if they’ll think i’ve been acting if I play table tennis. It’s bizarre and more often than not a figment of my imagination. But, then again, where is the line? Why should I be waited on? Why should I not wash up when someone has cooked a lovely meal for me? The reality is, I did wash up, tidy up, make fires and drive people places. But it always feels like i’m not doing enough and if I do anything, whether it’s helpful or for fun, that it means my condition is not as bad as I make out.
I don’t make a fuss about lymphoedema. I talk about it openly but never about how it really feels. You’ve got to live with it to know, like anything, and often it’s just plain awkward to talk about. My friends ask politely, sometimes bluntly. They can be offensive in what they say but not out of disrespect but out of a lack of awareness. It’s not my job to explain nor do I have the energy, so I shouldn’t be surprised with some of the questions, jokes and comments that come my way. But that’s a different matter that I will discuss in a future blog which will cover “relationships”.
So, back to Wales. What are some of these usual “Wales” experiences that have been influenced by lymphoedema? Remember the huge fry-ups I mentioned? Maybe it’s just age but i’m not sure I can eat like that anymore. That twinned with drinking alcohol seemed to cause a lot of issues with my leg. Dehydration and a lack of vitamins being the main factor. On one of the days it seemed to stretch out my baggy trousers and was hard to the touch. In fact, a friend even said “wow you’re leg is so hard”. Not only was it hard, but it hurt. That meant I missed out on “sports day” as we call it. I sat that one out. It wasn’t all bad though, I just read by the fireplace with my leg raised. But the point still stands that it wasn’t an issue a few years ago. When going on a walk, I took extra care when passing through thorny or rocky patches incase I cut or hurt my leg, which I did, or incase I split my stocking. I did the one walk, then the next, then another and enough was enough for me. That’s when chores and indoor activities became awkward and difficult. The old cottage floors are dirty and dusty – it’s a part of it’s charm. I wore slippers at all times to protect my feet as they are a real problem area for me. One night, a friend wore them outside and they got soaked through and covered in sheep poo. That was them done and meant getting my feet and socks filthy for the remaining days.
Finally, my leg now seems to define me. In many ways it is harmless and good fun, but after a while it can wear thin. We all aim jokes at each other in our friendship circle, that’s how we function, but many of the jokes fired at me seem to focus around my leg. A lot of the banter involving me usually contains a reference to my leg. For example, one drinking game that involved voting for a member of the group by pointing at them after a question was read out brought to light that that I would be first to be eaten on a desert island as some of my friends have always wanted to know what my lymphoedema tastes like. Strange bunch, I know.
But it’s not all bad. My friends are inquisitive and intelligent people. They often want to know more but aren’t sure how to ask. When they want to ask a serious question they mostly ask in a considerate matter which I appreciate. One friend asked with care if I struggle to find trousers. As it happens, I do, and I really appreciated that they cared. It’s a learning curve for them as much as it is for me. Although this condition is difficult I can’t help but feel I’d be no different if I were in their shoes.
I guess in the same way that Wales has changed for me, I have changed for them and the more we have these conversations the more we will all learn.