Megs Blog - Our Life With Horses

I've just got back home from another hospital visit, the 5th I think in 3 weeks. Not all for the same reason, which somehow makes it even more frustrating. Another Consultant taking their very busy time to go through with me what is happening, on Tuesday I had a lot of prodding and poking leaving me very ill afterwards, today was just a long clinical history "again" and a question, how do you manage?

That one sat a bit harder, we do manage, I juggle, I work when I can, I sit under hot water bottles, I take painkillers and other medication, I get up an hour earlier than I need to, to allow my daily meds to"kick in", Olive gets used to seeing her mum curled up in a ball on the kitchen floor as I was yesterday morning, or crawling onto the sofa where she hears me say for the millionth time "mummies just not feeling to well".

We manage, Tim (my long suffering husband) takes over, he cooks, cleans, checks the horses, hays the horses, mucks the horses out, he takes Olive to school, Picks her up, he watches me pull myself together every day, find another coping mechanism and push on.

"I'm lucky" I hear myself say to the Dr, I can manage my time, "I can work from the sofa, my husband steps in, if I have to cancel work I loose money but we juggle and manage, I'm lucky to have the flexibility to do this and the support"

But as I hear myself say this I also feel myself scream, I'm 41 years old, I'm not old, our managing isn't normal and I'm done with this life of meds, illness, exhaustion and walking through treacle....surely there's a way to change this?

More meds prescibed, thats two more daily meds ontop of the 5 I already take and the two more prescibed on Monday for another problem, the bags I pick up fron the dispesory every month are now two large plastic bags full of medication, thank goodness for the NHS but seriously, is this what it's going to look like for the next 40 years? Will I be lucky to even be here then the way this is going?

Current prognosis is, my joints will get to the point where movement is a real problem, I may have to have some bigs ops on the way to manage other issues, and what with meds and rest life will be a challenge. But I'm alive, I am lucky, I have an amazing life and I hate feeling like I'm moaning.

But today something shifted, as I walked back across the carpark, another MRI booked, more followups coming, my phone rang, "Hi it's Tracey, I'm calling to book your ultrasound for your kidneys" another issue I have to manage, another appointment.....there's got to be another way.

I ring Tim, we've done this before he said, before we got married we pulled you back from the brink of this life, we can do it again. "It's inflammation, my body is just so inflamed, EVERY thing I have is a form of inflammation just springing up in all different places. If I can get on top of the inflamation, surely my symptoms will decrease, I don't believe in "cure's" I believe in remission and holding the tide back, lets just see if we can hold this tide that feels like it's coming full force back for a few more years" I say.

He is right we did do it, we delved into this world pre-marriage, pre-pregnancy, pre-very serious illness and I was the healthiest, happiest and most energised I've ever been. Somewhere in all of that though I lost that me, I think it was when I was being pumped full of drugs to have my life saved, something shifted then, I lost the old me and didn't really know how to deal with this new, very vulnerable me. I was trying to be a mum whilst also trying to survive, illness became our world and hasn't seemed to leave...I want it to go now.

So today I mark a day, I'm shit at big changes and I know this will be hard, so I'm writing it down here, for myself to be accountable and also so I can't convince myself that I was fine before....

It's the 9th January and I want my health back, I'm strong, I'm fit, but I'm not healthy. I will start with food, nutrition, I will start with getting goodness back into my body and removing this bloody inflammation that is killing me.

Don't worry I won't just stop the meds, but my aim is to not add many more, and maybe in a year to be carrying less from the dispensary...let's see what this journey brings.