I Don't Know About You, But I'm Still Feeling 22

Tonight as I sit here in my cozy bedroom with my little lanterns providing soft light to my thoughts, I'm musing about the coming year.

No, it's not New Year's Eve, but the eve of the celebration of the day of my birth.  Tomorrow, I turn another year older, so in a way it feels like a mid year New Year and another fresh start.

What do I want from this year?  Well, I would like to be cured of my chronic illnesses, but magic wands are still in the early stages of research and development!

Seriously though, what would I like to see happen this coming year?  Some thoughts...

• For my health to improve further, or at least stabilise.  This would provide me with a more stable platform to live my life by for sure, and would also make planning for the near future just that little bit easier!

• To find a medication or treatment to relieve or at least manage my symptoms.  This really has been an ongoing struggle for me, and I've never found anything that works really well for any longer than about 2 weeks at a time.  If that could change, it would be lovely.

• To do well in my final University papers and graduate in July!  It's only a short course, but I am so proud of myself for achieving this during 2016 despite all of the challenges life and my health have thrown at me.  Now to decide if I want to do the follow on course...

• Get back into my guitar playing, and sing more.  Guitar has fallen by the wayside recently as I have just been too fatigued to work on it, but I'm hoping to get back into it soon.  Music is one of my greatest joys and is a wonderful form of stress relief, so I will make more of an effort as energy and my Uni schedule allow.

• To develop a greater acceptance for where my life is at, and to be at peace with the fact that I'm exactly where I am meant to be.  Long term goal this one, but with my faith, family support and perseverance, I'm determined to be more accepting and patient with myself.

• Make sure I nurture my body and love it as much as I can in every way possible.  To feed it well, exercise regularly, rest when it tells me and just to take great care of it.

• Figure out a practical career path.  The Physiotherapy dream is still burning bright in my heart, but at the same time it feels as if it's fading away from me.  I know I would make a brilliant Physio (not to blow my own trumpet), but I'm coming to terms with the fact that pushing myself into 4 years of full time University study may not be the smartest thing to do!  I'm not ruling it out, but could really do with a solid Plan B in case it doesn't work out the way I have always hoped it would.

• To get back into art and creative pursuits more.  I am loving my University study, but it's exhausting me to the point that I don't really have the energy to do much else!  So I would like to find a little bit more of a healthy balance in my life between my study, online, real and creative worlds.

• For my family to know how much I appreciate them.  Saying thank you never feels like anywhere near enough of a repayment for all that they do for me on a daily basis, so it's kind of a wish really, but I hope they know in their hearts how grateful I am to have them in my life.

• To one day be well enough to take my brother out on an expedition like he has done for me so many times, and to just laugh and have fun with him without being in pain or having to find a bathroom.  That would be nice.

• For people to see me as normal, and to see past my illnesses.  I'm still a lovable, creative, kind person with a pretty good sense of humour, and I would like more of the people in my wider circle to realise that and treat me like they're talking to me as a person, not just someone with illnesses.

And just to live another great year, taking as many opportunities that come my way as I can, having fun, getting to know more people and just living the most beautiful life I can.

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.

Losing Control

I cried this morning.  I'm not ashamed to admit it, because it's perfectly healthy to express your emotions.  To those girls out there who bottle things up and keep everything on the inside until it becomes utterly overwhelming, know that it's not weak to cry if you need to, no matter the circumstances.

Anyway, onto today's post..

Today I just wanted to be normal.  To have a normal amount of energy and stamina, and just be able to go out into the world and do things like everyone else can.  Today was a day that I mourned the loss of my old life, and reflected on the new and different, but still good life that I live today.

Living with a chronic illness not only changes how you live and the things you're able to do, but also to an extent it changes who you are.  For me, in the beginning all of this change and uncertainty it was very difficult to take in and adjust to. I would like to say that I have gotten better at accepting change in my life, and the constantly shifting landscape of my health, but some days I definitely still feel like a fish out of water!  I've been reflecting on change and control of life over the last couple of days, so I thought I would write a few of my thoughts here...

Let's all face the facts here - we all crave control in our lives.  Control of what we do, where we go, what we wear and what we say and how we act towards others are just some of the things that we get to decide on each day.  A lot of these decisions we don't even consciously register in our minds, because they are made in a split second by the pre-frontal cortex in our brain.  Having control of different facets of our lives makes us comfortable in the knowledge that we are in the driver's seat, and helps us to 'live in our comfort zone'.  Everyone likes to feel like they're in their 'comfort zone', am I right?

Comfort is therefore the complete opposite of fear.  Fear generally rears it's head when we are facing change, or coming to terms with something, for example a new job, house move or the start of a course of study at Uni.  In all of these 'new things', there is an element of loss of control on our part, because we are jumping into something new and unknown that we haven't done before.  So the feeling of loss of control and fear of the unknown come together, and pretty much make us freak out!

You may be asking 'What the heck does all this rambling about control have to do with chronic illness?'  Well, in a way the same principles of loss of control and fear apply to chronic illness in the same way that they do in most people's everyday lives.

Thinking back to before my Endometriosis diagnosis, I had a job that I loved and was forming a 'plan' in my mind about what I was going to do next regarding Uni etc.  All of this came crashing down around my ears as I got more and more unwell, had to leave my job and became this creature floating around in pain all of the time!  Getting the diagnosis helped for sure, because then I knew that it wasn't all in my head and that I was being taken more seriously now that I had a medical 'label' so to speak.  

But to be honest, my feelings of fear and loss of control only worsened, because now I had this new, scary diagnosis and I really had no idea what I was going to do.  So, similar to what you may experience in an everyday sense, I was basically plucked out of my life by one of those metal cranes like in a toy vending machine, and plonked into this whole new medical world which I had no idea how to navigate!

Over the past 2 years I have adjusted and it has become easier to live this new and different life of mine, but still, the goalposts are constantly shifting and there is always one thing or another to deal with.  I'm definitely not some shiny, brave chronic illness person who feels no fear and has a magic wand to solve all her problems!  Some days it all just seems like too much to cope with, but mostly I work through the fear and just break down into steps how I am going to cope with or manage what is happening to me in that particular day or moment.

An important part of coping with this is to have a support network around you, so that you know you have someone to talk to if you need to.  I'm incredibly lucky to have a supportive family, a few close friends I can confide in, and my Endo Angels support group who are always here to support me and lend a listening ear.

Comment below and let me know if you too have feelings of fear and loss of control in your life.  If you do, know that everyone does no matter what their situation, and it's perfectly normal!  It's just about finding some coping strategies that help you to work through whatever you may be going through.

Gee, this post feels like I'm totally rambling!!  But, it's what has been on my mind lately, so I thought I would come here and share...

Flying the Endo Flag

Sometimes you just have to stand up.  You have to be the brave one who gets out there and lets the world know.  Once someone starts, others will follow but there is always one person who starts the ball rolling and is the first link in the chain.

This week that person has been my Endo Angel friend Brooke.

She has decided to organise all of us Endo girls to complete an awareness project, which is based on the idea of the Chronic Lyme Disease awareness website 'Suffering the Silence.'  The idea is that you paint on your arm the name of the disease or chronic illness that you have, take a photo and share it on social media to raise awareness of all the health conditions out there that fall under the banner of 'invisible illness.'

Invisible illnesses are the ones that people fight every day, but you can't see.  We may not be in a wheelchair, on crutches or have any visible outward signs that we're unwell, but on the inside we are suffering just as much as others with recognisable illnesses.

Endometriosis is a classic example of an invisible illness.  The support group that I started about 6 months ago now has over 100 members, and if you browsed our profile photos on social media, you would see that we look like beautiful young women and appear completely normal.  But the internal battle that we fight daily is anything but pretty.  The chronic pain, nausea, draining fatigue, insomnia, bowel and bladder issues, interruptions to work, study and social life - I could go on.  But the point is that none of these symptoms can be seen by the average person, which leads to negative comments like 'It's all in your head' or "You look fine, so why are you still sick?'

This is the reason why we need to put ourselves out there and raise as much awareness as we can.  Why, when people ask us what is wrong with us, we try to educate them a little bit about our invisible illness - Endometriosis.

When our awareness project is complete, I will post it here for all to see.  I will share it with my friends via social media and email.  You know why?  Because I'm not afraid to stand up and say "Yes, I have Endo."

Awareness is one way of helping ourselves.  The more people hear about and talk about Endometriosis, the more chance there is that people power will make change to improve the healthcare that we receive, and one day bring about a CURE.

So, How Are You Doing?

That question that every chronically ill person grows to dread...

"So, how are you today?" or "Are you feeling better today?"

On the surface, it sounds like a lovely, caring thing to say, and in most cases it is.  When my immediate family and close friends ask me these questions, I know that they genuinely care about how I am and want to know how I'm getting on.

But as time goes on, you do grow tired of being asked if you're any better by some people.  Those people that just don't seem to understand that your illness isn't going away.  Those people who wonder if you're making it all up because despite having multiple surgeries and seemingly trying a new medication every week, you STILL aren't better.

It seems callous to say this, but it feels like when they ask, they just the instant gratification of knowing they asked you, and don't actually want any details of how you're getting on with your health.

I have developed a response for when those people ask how I am.  I just say "still here" and leave it at that.  Often they immediately change the subject and talk about something else (usually themselves), but surprisingly sometimes they have a different response.  Once in a while, they actually continue on a conversation path about my health and ask more questions.

Not sure if this is the reason, but I like to think that it's because they're so surprised by my response, that they can't help but want to know more...

June Thoughts

Tonight I'm exhausted having spent a few hours with my Granny to help with her stroke rehab.  It's hard work, but I push through the exhaustion and keep going because I can see the results in her cognitive ability, speech and just the smiles on her face.  That and the fact that apart from Mum and I, there isn't really anyone else contributing to try and help her regain what she has lost.

Anyway, that's not why I'm here tonight...

I'm here because I've been meditating on the stage I'm at in my life right now, Endo wise and just in general really.  Doesn't help that I'm going to be turning another year older soon either, as that time of year always brings on thinking about and reflecting on the previous year.

To think that the past year has brought no real achievements for me in my personal or professional life at all scares me.  That I haven't been able to work, volunteer or study because my health has been so bad.  The only big thing that I've really achieved in the past year is to be in hospital less often, only around 3 times in the past 12 months, not counting the numerous GP and Outpatient appointments!

Just the realisation that days are continuing to pass me by and I'm not able to make any really big life changes because of my body is hard to accept.

But I guess at the end of the day, this is what God wants me to do right now.  To focus on myself and to rejuvenate and heal my broken body and mind.

A good and beautiful friend of mine, who I actually first met in hospital last year, has sent me some messages lately that have meant a lot to me and sometimes brought me to tears.  She is helping me, through her encouraging and positive messages, to come to a place of acceptance with where I am at in life right now.

S, you may have no idea how much your messages are helping me right now, but I just want to thank you from the bottom of my heart.  People might say that they're only words, but it's how you interpret them that counts   Thank you so very much for supporting me, it means so much to me.