I’ve been living with endometriosis for almost 24 years now. I can vividly remember my first period. I was staying with my granny and I spent most of the day crying from the pain, throwing up and wondering what the hell was wrong with my innards that they would revolt on me. This was my period for quite a few years – well actually it got much worse – hooray for morphine injections! You get the general idea. Lots of pain, random fainting and collapsing from the pain.
Over the years my poor insides have been put through the wringer, to the extent that I’ve had two laparoscopies and I’m seriously considering having it all removed once I’ve been brave enough to come off the pill for long enough to hopefully get pregnant.
One of the joyous side effects of my endometriosis is a dicky tummy. My IBS is a fun one. When I need the toilet, I really need the toilet. Particularly after having my insides lasered! As you might imagine, when you develop this sort of problem you become very aware of all bathrooms available when you’re away from home, just in case. I may look entirely fine and you may pull a face at me when I sometimes give in and use the disabled toilet, but I really cannot wait. Thankfully years of pilates is helping, but it won’t always.
Along with an awareness of bathrooms comes anxiety. Something that grew over the years but again, I’ve had help dealing with. I have to have an escape route, just in case. I generally get overwhelmed with large crowds of people because they might slow me down or I might get boxed in. The fight or flight instinct is always just on the peripheral.
One such incident? A rather epic Fatboy Slim gig on Brighton beach – back when they were allowed! We had a friend come down especially for it too. I’d been feeling a bit pants and I knew I was due on in a few days, but generally I can deal with it as long as I’m ready. I’d taken the painkillers, I’d psyched myself up. I was going to go and really enjoy myself. I still had almost a week, so I should’ve been fine.
I doubt I’m alone on this front, you’ve a big event on that you really want to go to, so you convince yourself that you’ll be fine. You can do this. It’ll be grand.
Turns out it won’t be.
There were a few warm up acts and we were all enjoying the wonderful sunshine and the general vibes. There was a crowd but it was nice and open, although not everyone had arrived. Then we started to get closer and closer to Fatboy Slim coming on stage. More people were arriving by the minute and our wonderful side spot that we’d manage to secure, well it started to feel like a bit of a bad idea. We were getting shuffled sideways even more and it was becoming a bit hectic.
I kept breathing and telling myself it was fine. The aches started to get worse and I was becoming more tired. The positivity I’d been feeding off was disappearing fast and was being replaced with the anxious feeling that I wouldn’t be able to make it to the bathroom if I needed it, there was only a row of portaloos on the other side of the stage – rookie error, we should’ve stayed near them. Didn’t matter, with these crowds there would undoubtedly be queues and as I look fine I can’t always get to the disabled ones! I was also worried that if the pain got much worse I just wouldn’t be able to stand much longer. I didn’t have the strength. All of this was going round in my head, mingled with waves of pain.
It got too much, I started to freak out a bit, I felt trapped and I had to get out. There was just no way I could deal with it all. So I kissed my husband and our friend goodbye (yes they tried to help but I wasn’t having it and I told them to stay) and I made a break for the exit. It took me about 20minutes to get out and all the time my breathing was speeding up and the pain was getting worse because of the stress of it all. I walked about another 10minutes away from the crowds and I sat down on the kerb and just breathed.
We’d paid a fortune for tickets, queued to get them and were so delighted! Now I was missing out but there was just no way I could go back in. Instead I went home, thankfully a short walk away, I made myself a hot water bottle, took more of the stronger painkillers and tried to get some rest.
This is just one of the gigs I missed out on, never mind nights out, parties, other fun life things. On so many occasions I have organised myself so it shouldn’t arrive on an event. Turns out my body doesn’t care and it will do what it fancies. This was very apparent on our recent adventures travelling! It interrupted our surf lessons! I was mid pill packet on that one too!!
I guess it could be worse. Although it did take me 13 years to finally get it confirmed and I’ve been haunted by the words of the various surgeons – “you should’ve started trying for children years ago” (when I wasn’t anywhere near ready). Or when they described how all the legions and adhesions were slowly freezing my pelvic area – which I can feel with every step I take. I’m thankful that I’m able to live a relatively normal life, that I’m not sick and in massive amounts of pain every day. Yes, I can feel it on an almost daily basis, but I keep moving forward.
How can things be made better? I guess if people knew more about it, that you don’t necessarily look ill, that it’s exhausting and that we really do need the bathroom when we say we do, we’re not exaggerating. That sometimes just sitting down for a bit will help. That we may be anxious in crowds and we’re not freaking out in a bid for attention. You try worrying that you might collapse under the next wave of pain and that you might then get trampled by an overexcited crowd!
Now I mostly stick to smaller more intimate gigs. I go to venues that have lots of facilities available. It’s just too exhausting to do big concerts. Of course I’ve made a few exceptions – Foo Fighters being one of them – but they were well organised events in arenas. You have to think of these things when you live with any kind of chronic pain illness.