The disease that I have started many years ago but had only recently been diagnosed in January 2020, and the only way I can describe the pain element of it is this.
Imagine having a golf ball that has fluid around it on your groin/armpit/breast/waist, sometimes multiple golf balls sometimes just 1. You have to walk around all day with it and not drop it for 72-96 hours and as the hours progress someone slowly starts poking you with a screwdriver that has been held under a flame. To begin with it’s manageable because the area isn’t sore yet from the constant rubbing. But after 24 hours you can’t take a step up a curb without it crippling you. So u lay in bed hoping for the ball to just drop and the ache and tension and poking to stop. Now you think laying in bed is an easy option. But remember u can’t drop the ball. The ball chooses when it wants to drop. So you now lay in an awkward position to keep the pressure from said areas. You close your eyes hoping to get some rest from an exhausting day of not dropping anything watching every move to prevent the screwdriver feeling and you now feel a little calm because you are safe in bed…. Then bang. The screwdriver is back. Hotter then it’s ever been stabbing and holding it in the same place then letting go to relight the end to then touch you again. You don’t get any sleep because the minute your body relaxes it’s like an invitation for the screwdriver. It’s now 5am and your busting for the loo, not wanting to fall to the floor in the few steps it takes to get there If it’s the groin affected. Or if it’s the armpit and you can’t wipe yourself because u can’t stretch to reach with no one there to help.
Awaiting the doctors to call back from triage you know it’s antibiotics and subtle pain relief is the answer. They want to see you. So you start the day knowing the pain threshold has now risen by at least 4 from the previous 24 hours. A family member helps you walk the stairs because the drop of a single step brings back that screwdriver, now at a pain level 9/10 Struggle to get in the car because u can’t sit on the area without causing pressure. Backs hurting now along with thighs as the awkward positions you try To sit in to avoid the pain. Stand in doctors leaving against a wall to hold you up. Your name pops up and you manage to stumble through.. let’s have a look they say…
The doctors report…
Boils and abcess and scarring. Abx given
Patient looks well.
You start to cry. The pain is unbearable and you know it’s gonna be a good 24/48 hours for antibiotics to work and get some relief. Making the same painful journey back home it’s now a waiting game with the pain level at solid 10. No relief.
48 hours of laying in bed crying in excruciating pain wanting someone to just give you a break and release the golf ball/balls, mentally exhausted from worrying about work and the pressure your putting on the family member that has stayed with you to help knowing you can’t stay alone. You wonder if it’s all worth it?
And then you smell it, you feel it, the euphoria of the tension dripping down your thigh along side the nausea of knowing what the smell is.
The golf ball has dropped!!
Feeling positive you make your way to the bathroom to try and clean up the mess and ensure it’s all out….
What do you see ?
A gaping hole the size of a ten pence piece where the golf ball was.
Now the pain is at a 5. Sore in the one area that now you need to dress and keep clean so you don’t get another infection. That’s a good 5-7 days for the hole to close and leave a scar ready for the next one.
In that 5-7 day wait you now have a new golf ball….. either next to the older one or in a completely new place of the body…
And we start all over again. The only difference in this story is that not all of them get relief from the antibiotics. Sometimes it’s a quicker process and the golf ball drops when you are at work. Or shopping. And the embarrassment is just as high as the pain relief at 9/10.
People look at you funny. They can smell it. You go bright red because there is no hiding the fact that it’s you that is giving off that odour.
I’m sorry if this seems imaginative or hasn’t got enough detail to someone reading it but this is the only way I’ve found to be able to explain myself when people ask are you ok you look shattered, oh your moody today. Above is the exact reason why. Then the emotion takes over because I’m fed up of explaining myself and feeling like I’m always complaining. I feel like I’m a burden at work and with friends and family.
Not everyone wants to understand what’s wrong. But trying to explain is me telling them why I am the things listed above. Moody. Lazy. Exhausted. All things I’m told I look on a semi bad day. But then days I’m actually feeling better then the last 24 hours as I’m able to leave the house without falling in pain. So it sets you back into the mindset of what’s the point.
And before you know it I manage to get a good nights sleep with no golf balls or burning screwdriver or horrid smell, stained clothing or bedding, no tears and ready to face the day.
Shower myself feeling good and as I towel dry self I see it. A new golf ball. Red hard small lump. And I just sit there deflated. Mentally preparing myself for the next 72/96 hours.
Thank you for taking the time to read this and I hope it gives you an insight into what people deal with on a daily basis with this disease. A Disability that is well and truly hidden and not a lot of medical consultants have any knowledge of.