….without having a nosebleed.
I have HHT. I’ve written about it a few times previously, but if you need to catch up, head this way first. I have daily nosebleeds. Sometimes it’s just a 5 or ten second trickle. Sometimes it’s 40 mins in my boyfriends bathroom and it’s exploded all over the sink, the tiles, the floor and me. The gift that keeps on giving.
Lots of people have nosebleeds. I get them because HHT causes my blood vessels to form improperly. They’re a big old tangled mess. It’s a hereditary condition and my dad, brother and two daughters have it too. Needless to say, we go through a whole load of toilet roll in our house.
HHT is a royal pain in the arse. When it’s not causing life threatening symptoms, such a liver failure, stroke and pulmonary issues, HHT likes to find an outlet to bleed like hell, without any warning. I’m a fan of sharing just how frequent and severe my bleeds are on my social media. I believe it helps to raise awareness of the disease, which in the UK is massively underrepresented.
Filtered pics and trigger warnings aside. My HHT gets me down a fair bit. A fellow HHT sufferer posted in a Facebook group that she’d lost a loved one to HHT over the festive period. If that wasn’t bad enough, her state of heightened emotions meant she’d suffered horrendous bleeds of her own, every day since. It’s hard going.
While there is no cure and treatment is still very much in the developmental stages for HHT, having each other is the best medicine right now. People who understand what living with a potential ticking time bomb disease feels like. It’s not great, but an understanding ear and virtual hug means the world.
Sharing tips on how to stem bleeds quickly (tampons up your nose – winner) or what questions to ask your ENT, vascular or genomics specialist (can I see what you just pulled out of my nose please?) and the odd message of support, it’s all we’ve got.
I want to share some things with you that I can’t do. My HHT dictates what’s good on a daily basis. Some days I can ride my bike to work. Some days I can ride my bike to work but I arrive looking like I’ve been involved in a road traffic accident, covered in blood. You get the idea.
Debilitating is the word I’d most associate with HHT. Frustrating is a close second. Here’s why.
Ten things I can’t do without having a nosebleed.
1 – Blow my nose. Nope, don’t even thing about it. Guaranteed a double nostril downpour, for sure.
2 – Sleep on my right side. After multiple laser surgeries, my right nostril is now weaker than the left. If I lay on my right during the night, the pressure builds in my nose and it’ll pour all over my pillow and bedding.
3 – Take a hot shower. Yep, hot water and my nose simply do not mix! Team lukewarm over here!
4 – Blend foundation or concealer on my nose. Nah, red, blotchy and interesting it is. Not worth the risk.
5 – Sauna or steam room. Again, nope. Is that my temperature creeping up? Incoming nosebleed it is then.
6 – Bend/lean over. This sounds utterly mad, but even if I so much as lean off the sofa for the remote, my nose is going to go.
7 – Rush. This one is particularly troublesome because I’m not exactly the most organised person. The morning school run, in the rain, laden down with bags and flutes and pe kits and lunch bags has resulted in many a HHT fail. I think our school friends are used to seeing me covered in blood these days.
8 – I’m going to say it. Sex. I’ve bled on my other half a couple of times at the worst possible time. It’s not a consistent problem but it’s not exactly great. Luckily he’s awesome about it.
9 – Strain. Again, ewww but true. I know that anything that builds pressure will result in a bleed. I’ve got a lot of love for leafy greens and less awkward chats with my consultant about toilet habits!
10 – Brush my teeth. I do it twice a day, so obviously I run the risk of two bleeds each day. Which then makes me feel sick and light headed. Plus, if my nose bleeds into my mouth, or my lips or tongue bleed, then yes, you guessed it, I have to brush my teeth again. Such fun.
So there you go. A little insight into the daft but annoying as hell limitations of having a vascular disease. If you’d like to find out more about HHT, head to www.curehht.org.
Kate Reilly James 