For those of you who haven’t met my mother, you should. Welsh (though normally sans accent), dangerously intelligent, and usually hiding herself and her core of steel behind a pile of books, she will lull you into a false sense of security with her quiet, doting vicar’s wife act and big green eyes, then pull the carpet from under you with a pithy remark, or a flash of her sparkling wit. While I will happily engage in a full blown screaming match with my father, even I cower at the possibility of doing the same with Mum. She’s the real dragon.
Growing up, I thought my family were totally normal in their level of dysfunction. The fact that my mum didn’t run after us, and occasionally used a walking stick never really crossed my mind. She had more than enough ways to control 3 kids under the age of 5 (I never said she wasn’t mad…); she could silence us with a look, and get us back by her side with the very tone of her voice. In my teens, I (and my brothers) started to become fiercely protective of her on her electric buggy – a protectiveness which was probably unnecessary, as her driving (and inability to look when reversing) was and is generally the most dangerous thing for miles. I never really appreciated how difficult things were for her – she just got on with it. Mum was the first disabled woman to read Law at Cambridge, and yet the addition of a pair of crutches or a wheelchair do occasionally leave people speaking to her VE-RY SL-OW-LY. She’s polite enough to carry on as per normal, and let them realise in their own time that she’s FAR more intelligent than them. My Mum is pretty incredible.
Two weeks ago, I had an appointment with a Rheumatologist, a doctor who looks at systemic conditions, and this generally means they focus on joints, with conditions such as Arthritis coming under their remit.
If you’ve seen me recently, I’m wearing one (or occasionally 2) knee braces. As a kid, I was always getting ‘bad sprains’ of my wrists and ankles, and once had to take 6 weeks off work nursing after a fight with a particularly aggressive Pump Stand, which tried to dislocate my left wrist. At a Toga and Tequlia Party in the medical Fresher’s week, I dislocated my knee dancing, popped it back in, and necked a few more shots of Tequila before carrying on; it wasn’t just the hangover that hurt the next morning. On the last day of my Moroccan Holiday this year (ooo, dead posh), I woke up unable to move my head, crying in pain. Turns out a couple of my vertebrae probably decided to go for a wander (I had been demonstrating ‘Proud Mary’ to the Boy the day before…). Combined with the fact that ALL of my joints happily bend the wrong way (I have the best party tricks) and I can still do the splits aged 27, my Rheumatology lecturer suggested I should probably get a referral to see one of her buddies. Given I’ve been having chronic knee pain for over a year now (and in my insanity, ran a half marathon on them), I thought I’d give it a go.
The lovely doctor asked a series of odd questions; (“Can you do the splits? Do your thumbs bend that way? Do you scar easily? Do you have stretchy skin?’ – yes to all), and got me to perform my circus acts, and had a look at my naughty knees. ‘You have Hypermobility Type Ehlers Danlos Syndrome’, she said. “Try saying that when you’ve had a few”, I said. She sighed.
So now I have a referral for hydrotherapy and a leg brace assessment (yes, more sexy leg wear), an explanation for why I often feel like my shoulders and elbows are in the wrong place, and why I have a love affair with NSAIDs that threatens to come between me and my stomach lining. My own brand of EDS is probably quite mild; I’m not in a wheelchair, I’m trying to avoid crutches and sticks (my braces are more than attractive enough right now), and I just ran a bloody half marathon for goodness’ sake (though I’m told my running days are over. Obviously gutted).
Unfortunately, this all came through for me in the middle of a massive knee flare up, and I currently feel more disabled than ever. I can’t stand in theatre when I’m watching operations. Buses are my nemesis; I have become incredible at glaring at people sat in priority seats. I went to a gig the other night, struggled to get up all the stairs (no lift in the O2 Brixton Academy), and couldn’t see much because I couldn’t stand, surrounded by beautiful things dancing as if they hadn’t a care in the world. I find myself ‘speed-hobbling’ everywhere, because I don’t want to be late, because then people might feel sorry for me. I’m grouchy at social events, because I’m trying to work out when I can next take painkillers, and I’m exhausted from all the speed-hobbling. People see the brace, and introduce themselves with “What the hell did you do?!” – “Hi, I’m Hannah, nice to meet you. I’m a part-time Bear Wrestler. Sometimes things go wrong!”
I don’t want people to see my ‘gammy leg’; but I want them to know to help me. I don’t want them to know I’m in pain; but I want them to appreciate that I’m not just being a moody cow. And I’m a bit scared, if I’m honest. I’m lucky to have been diagnosed while (reasonably) young; I can get physio, and drugs, and support if I need it. But I know that people with this often do spend time in wheelchairs. I’ve always been the ‘healthy one’ of the family. My ticker keeps ticking and my legs keep working. Now that’s not the case, my identity is changing, and I don’t like it. You don’t really see many wobbly doctors, let alone surgeons.
When I’m a bit lost as to what to do with myself, I generally give myself a challenge. When my brother died at Christmas, I ran a 10K and a half marathon in his memory for the BHF (and my knees are SO grateful). Now running is over, and people keep telling me to swim. I HATE water. Getting my face wet genuinely terrifies me. I tried the local pool the other week and ended up crying in the shallow end. Classy (wet) bird, me. So I’m going to make myself learn, and I’m going to complete a challenge. Maybe swimming Loch Ness (though probably in a pool…). Oh, and I’m going snowboarding over New Year, even if I need to drug myself up. Take that, wobbles.
My Mum doesn’t have EDS (she can’t even say it, so has taken to calling it ‘Los Angeles Syndrome’ – sounds far more fun). Her brain and her legs simply had a falling out, and don’t talk much. But I’m really grateful I have her, because she makes this wobbly business look easy.