Originally posted 22 August 2016.
Let’s go back to school
Hands up who knows what lymphoedema is? Chances are, you have absolutely no idea. Ok, so hands up who knows what the lymphatic system is? Some of you may be slightly more confident to raise your hands for this one. Well, let me break it down for you, just in case. In short, the lymphatic system helps to defend your body from infection and to get rid of all the crap inside your blood. When it gets damaged, or blocked up, it causes lymphoedema. According to the Lymphoedema Support Network, recent research suggests that lymphoedema affects at least 240,000 people in the UK. That’s just under a quarter of a million of us.
I say us, because I have lymphoedema. I have it in both legs and feet, but mainly my right foot. This is in conjunction with the postpartum fallen arches that I endured. This means that my right foot is always slightly wider and fuller than my left and it swells even more when I’m pregnant, on my feet for ages or when it’s really hot i.e. when I’m on holiday or during the Summer here in the UK, i.e. the times when you want your feet looking as pretty as they can be. This means that I am somewhat restricted as to what footwear I can adorn my feet with. This also means that I have to wear compression stockings to keep it under control when it gets really bad. This also means that I have regular check ups with a lymphoedema nurse to make sure it is well managed. I haven’t always had it, and that is probably why I find it so annoying, but I have had it for over ten years. It is a bitch.
There are two types of lymphoedema: primary and secondary. Those who were born with some damage to their lymphatic system have primary lymphoedema. This is usually pretty bad. Apparently, I have primary lymphoedema, although it wasn't triggered until I was in my 20s. Luckily, although it has impacted on my life at times, mine isn’t too bad. Secondary lymphoedema can be pretty bad too. The NHS Choices website describes it as “caused by damage to the lymphatic system…often due to an infection, injury, cancer treatment, inflammation of the limb or a lack of limb movement”.
Fashion. It ruins lives.
So, what was the damage to my lymphatic system caused by? Fashion. Or more specifically, shoes and my love thereof. That’s right. I bought a pair of shoes that I had been lusting after. They were too tight, but I figured they would stretch. I wore them to work the day after I bought them. By the time I had got to work, I had blisters on the backs of my ankles and the top of my right foot. I went to Boots and bought those Compeed blister plasters and tried to tough it out for the rest of the day. I couldn’t. By lunchtime, I had to admit defeat. I went to the market at Strutton Ground and bought me a pair of £10 pleather driving shoes. They were ugly as hell! But they relieved the intense pressure on my feet and I loved them for it.
My right foot swelled up soon after this episode and never ever recovered fully. The irreparable damage had been done. Thankfully, I had private health care and managed to see a specialist who diagnosed me with secondary lymphoedema. I was devastated. Every resource I found told me that there was no coming back from it and that all I could do was to manage it. I was in my mid twenties, I had a great set of pins and I loved shoes. It was the greatest disaster I had experienced up until that point. And, to top it all, it was self-inflicted. I had no-one but myself to blame.
The struggle is real
So, fast forward a few years to what this means for me now. Well, I have built lymphoedema care into my routine. I’ll tell you more about that shortly. And my vanity has led me to refuse to wear any shoes that make my foot bulge. I even had to give away my beloved Nike Rifts. I shouldn’t really care, as I’m 99.9% sure that no-one is inspecting at my feet to make sure they aren’t bulging, but I do. Now, my shoe collection is entirely made up of converse (lo and mid), brogues, mid-shoe boots, chelsea boots, Birkenstocks and flip flops. I also have one pair of gladiator-style sandals that I can just about get away with.
Actually, that’s a lie. I have two pairs of strappy sandals for special occasions. My feet bulge out of both, but I’m not a child, so I can no longer get away with teaming chuck T’s and a party dress to a wedding. It’s just not as cute once you’re in your thirties.
I find myself looking at other women’s feet. Alot. Especially when they are wearing strappy sandals or beautiful heels. Not in some weird, foot-fetish kind of way, but more in some weird, pity party kind of way. Like, how comes they get to have normal feet and wear pretty shoes and not have to worry about a foot and leg skincare routine? No fair.
So what is this elusive lymphoedema skincare routine?
There are a few things that us lymphoedema sufferers, or lymphies, can do to help our lymphatic systems along as much as we can. I’ll take you through just a few of these.
i. Exercise and stay healthy: This is a basic that everyone, lymphie or not, should aim for. Carrying additional weight means it is harder for your lymphatic system to drain the excess fluid. Getting your heart pumping on a regular basis also helps with the drainage.
ii. Moisturise: If you have lymphoedema, you simply cannot allow your feet/legs to get dry and crack, as that is when infection can attack and cellulitis, which can be life threatening, can arise. Fortunately for me, moisturising is not a problem as I have always maintained a strict moisturising routine that involves a number of oils, potions and lotions. My nurse always comments on how smooth my feet and legs are, as she gently caresses them…*side eyes* erm, moving on.
iii. Kinesio tape: You know that brightly coloured tape that athletes sometimes ponce about in? Yeah, that. It can help to pull the skin up and help the lymph to drain, when properly applied. However, I have found that as I have black skin and MUST moisturise my skin, especially my feet, daily, it doesn’t adhere and, as such, is a complete waste everybody’s time.
iv. Elevation: Keeping your legs elevated while sitting at a desk for most of the day and still trying to look professional is almost impossible. But, not quite. Elevation is a must – the higher the better.
v. Compression Stockings: These are available on prescription or privately. The privately available ones offer much more variety. They are a bitch to pull on. Imagine flight socks, but about 500 times tighter. Like pulling on a wetsuit while you are already in the water. Something along those lines. For a while, my nurse tried to fob me off with the flesh-toned stockings. They obviously weren’t designed with my flesh in mind…
vi. Massage: You may have seen Manual Lymphatic Drainage massage advertised on Groupon, alongside the colonic hydrotherapy, and wondered what the hell it is…or not. This form of massage is helpful for stimulating the lymphatic system and promoting the flow of lymph throughout the body. It should only be sought from practitioners who are registered with MLD UK (see: http://www.mlduk.org.uk/) as these guys are accredited to deliver this highly specialised form of massage.
vii. Appropriate footwear: I always make a beeline for the wide feet section in any shoe shop. Or ask which styles come in wide fittings where there is no wide feet section. I remember when shoe boots first came onto the high street in shops other than Clarks and Van-Dal. I remember when I could first buy a pair of brogues in the womens’ side of the Office store (I miss you, Poste Mistress!). Then I discovered Grenson. Then heeled brogues became all the rage and I thought I had died and gone to heaven. The third trimester of my pregnancy with Kid 1 took place during the heatwave Summer of 2008. My feet, ankles and legs were as one. They felt so tight at times, I thought that they would burst. I went into work in flip flops. I worked in the City as a management consultant, but, I thought “f*ck it – needs must” and slayed the hell out of those Havianas. Anyone who dared to challenge me was directed, firstly, to my bump and then to Human Resources.
These are just some of the things that us lymphies have to go through. It’s a hard (and quite an expensive) life. But, I am one of the lucky ones, so I feel like a bit of a fraud at times. Where do I get off moaning when I can’t find a pair of shoes that don’t make my feet bulge, when there are others out there who are really suffering? I can get away with forgetting to wear my stocking a few nights a week. Some lymphies MUST wrap their affected limbs each and every night or face the painful consequences the following morning. Most of the patients that my lymphoedema nurse sees are either living with cancer or cancer survivors… my problems pale even further into insignificance.
So, why am I writing this? Well, use me as an example of the perils of not listening to your body. I know you might think those shoes are all you need in this world of sin, but if they are too tight – forget it. Take it from me and find another pair, because it’s just not worth it. I also know there are others like me, struggling to find a nice pair of shoes for a night out or their end of year prom or even just to wear to school or work. I’m not offering you a shoe alternative, as lymphie’s come in many shapes and sizes and you must do what works for you, but I want you guys to know that you are not alone. I can’t promise that it will get better for you, but know that there are others going through your struggle too. Just writing this has helped me realise that I need to get over myself. Keep living life, because lymphoedema doesn’t have to mean the end. And to those of you who are just reading this and thinking “oh, that’s interesting” or “thank God I’m not a lymphie”, please just be kind because the struggle is real.
If you are living with lymphoedema, or what might be lymphoedema, and want someone to talk to, please feel free to contact me, for what it’s worth, or one of the many instagrammers showing how life doesn’t end once you’re a lymphie. Some of the inspirational accounts that I stalk are: @lymphie_me, @ladylymphoedema, @capester1967, @meagan.barnard, @lymphielife and @lymphiebarbie to name but a few.
Or, for more professional advice, contact the UK Lymphoedema Support Network here: http://www.lymphoedema.org/
Cee x
PS. Massive thanks to Meagan Barnard, an inspirational lymphie sister from Across the Pond in the US (that’s her looking all Rosie the Riveter in a dress and with a flower in her hair) for very kindly allowing me to use her beautiful image.
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