A Period of Patience

patience

noun

1. 1.

   the capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious.

   "you can find bargains if you have the patience to sift through the rubbish"

   synonyms:

   forbearance, tolerance, restraint, self-restraint, resignation, stoicism, fortitude,sufferance, endurance;

They say patience is a virtue, and when you have a chronic illness it is definitely an attribute that you need on your side.

For me, being patient has pretty much been a permanent state of mind for the last 4 years.  Patience waiting for appointments, for treatments to work (or not), for surgery, and most of all just for something to change for the better, to improve.  In fact, I've probably been trying to have patience for a lot longer than that, as I always hoped that in the years prior to my endometriosis diagnosis that my health would change and the pelvic pain I experienced would gradually ease and go away.  All the doctors said it would improve as I got older anyway - how wrong they were!  

Positive change is like a little bit of sunshine - if you can find some small improvement, it helps you to remain patient and optimistic that more positive changes may happen in the near future.

If instead you are seemingly stuck feeling the same way all of the time with no improvement to your physical or mental health, then patience can be harder to maintain.  Your calm and patient self tends to become elusive, and instead you feel constantly irritated, upset, angry and out of control.  I have felt just like this many times during my health and endometriosis journey, and it is a truly awful place to be.  It is so hard to get yourself out of that negative head space as well - people telling you to 'snap out of it' have no idea how it really feels to feel so controlled by your state of mind.

At the moment, I am feeling a bit stuck, because I'm dealing with constant bleeding, intense pain and the need to take regular pain medications (and anyone who knows me well will understand how much I hate taking pain meds!).  I am disappointed to be in so much pain currently, but have to keep my patience and perseverance going, and remind myself that I am only 10 weeks out of major surgery for my endometriosis and that 'good things take time' as the Mainland Cheese TV ad says.  But this time, unlike other dark times in my life, there is an abundance of hope that things will gradually improve.

As my Gynaecologist said to me when I attended my post operative appointment a few weeks back...

                  "All we need now is time and patience".

Sick, Sick, Sick

I'm so sick and tired!

Sick of bring chronically ill

Sick of feeling stuck

Sick of putting life on hold

Sick of feeling like I have no control over my body

Sick of being treated like a medical mystery instead of a whole person

Sick of trying to take care of myself and not feel any better off for it

Sick of being poked and prodded

Sick of being judged and patronised

Sick of doctors treating me like I'm some kind of nuisance

Sick of being ignored

Sick of not being taken seriously

Sick of doctors telling me that all of this must somehow be my fault

Sick of poisoning my body with medications that don't help

Sick of people telling me it's all in my head

I'm just so sick of everything...

Turning a Corner with a New GP

Today was the first day in quite some time that I came away from a GP appointment feeling somewhat happy.  That's an achievement considering how my last few appointment have gone!

So, I took the plunge and went to see a new GP today, in the hope that she would be more helpful and empathetic than my current one.  Well, she's not exactly new because I have seen her a few times when my GP hasn't been available, so we're not complete strangers.

The GP I have been with for the past 18 months started out ok, but as time has gone on it has felt more draining and less productive going to see her, as she has just acted in a sarcastic way and not done anything really helpful for me.

Although I'm not naive enough to think that any GP can cure me, all I ask is that they treat me if they can, suggest things for me to talk to my Specialist about or just give me some support and empathy along the way.  You wouldn't think that could be too much to ask, would you?

But sadly, it's not that easy to find a GP who has all those attributes rolled into one nice and friendly package, or not that I've found anyway!  So heading into an appointment with a new GP today was a bit nerve wracking to say the least, and I was practising my meditative breathing in the waiting room.

In the end, walking out of that appointment I felt like a weight had been lifted off my shoulders.  My new GP,  Dr S, was kind, friendly, empathetic and she even noticed a couple of changes in my physical appearance, even though the last time I saw her was in early January!

She suggested a couple of things to bring up at my Gynaecology appointment next week, went over my current health situation, and had even read my notes before I arrived to see where I was at!

It was a real breath of fresh air, and hopefully our Doctor-Patient relationship will stay that way for a good long time yet.  

In the back of my mind I know that it might not last, and that over time she may get a bit tired of caring for me, but all my hopes are pinned on this not happening.  Hopefully as long as I try my best to take care of her, she will do her best to take care of me.

I'm Not An Inspiration

Lately a couple of the lovely young women in the Endometriosis Support Group that I run have told me that I'm an inspiration to them. 

It's a weird thing to hear, because although I know it's meant as a compliment, it also makes me feel a bit uncomfortable to be honest. 

There's this whole impression people have that anyone who, for example, is in a wheelchair or has cancer is inspirational, and in some cases they're put up on a pedestal and told how brave they are etc.

What I want you to know is that I (and most others with chronic illness) don't want to be 'inspirational' or be made to stand out just for living my everyday life. Yes, my life is very different from yours, and yes, I struggle, but I'm not here on this earth to be a role model or inspiration to anyone. 

I just want people to acknowledge and try to understand how my illnesses affect my life, and support me as best they can.

But I don't feel it's right that I should be called inspirational over anyone else. All of us humans are just trying to live the best life we can, and all of our circumstances are different. There's no fair way to compare any one person to another person, because we're all different and unique, and that is what makes the world such an interesting place. If we were all the same life would be dull, and they do say that variety is the spice of life after all!

And really, I don't feel like an inspiration in myself, and a lot of days I actually feel inadequate because of my illness. I feel like I'm not doing enough, or being enough or using my time to it's fullest potential.

But I'm doing the best I can with what I have in this moment, and that's all any of us can do.

I'm not an inspiration, and I'm quite happy with that. I'm just one sick girl with a laptop, trying to make her own way in this crazy and diverse world.