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.

How Do I Take Care of my GP?

This is a question I thought I would never have to ask myself!  Mind you, there are a lot of things I thought I would never have to endure or even think about, and a lot of those things have happened anyway, so I guess this weird thought should come as no surprise...

I have an ongoing issue with General Practitioners.  It sounds terrible to say, but I've been through a couple of different ones since my diagnosis just over two years ago, although I have been with the same one for over a year now.

The issue is that, for the first little while, they seem really caring, helpful and proactive in helping me with all of my 'complex' health issues.  They suggest things to try, and do their best to help me cope and obtain treatments or diagnostic procedures to try and figure things out.

But after a while, they seem to tire of me and become flippant, frustrated and not so helpful.  There are no more things to suggest (unless I suggest options myself and ask their opinion), and no more medications or interventions to try.  They start to tease me when I arrive with new symptoms, or when I dare to ask questions or share how I'm feeling in the hope of finding a little compassion, sympathy or support.

This quote from a blog post of a chronic illness patient really brought it home for me...

Once you reach a certain number of diagnoses, it's like they check out.  I can feel it.  When they see me coming, they begin to put off a vibe of annoyance and distrust.  It's heartbreaking.  I need them.  I need to be given a fair shot.  But they don't want to deal with me.  I'm too complicated.

To look at it from a GP's point of view, I can understand their frustration to a point.  I understand that it hurts them to know that they can't 'fix' me, and that they might even send me away following my appointment without being able to do anything directly to help with whatever I am dealing with at that time.  Here is a good blog post about working with chronic illness patients that has been written by a Doctor -

http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

But I'm not just there for a new prescription or in the hope that there is some new 'magic bullet' that will fix all of my problems.  I'm not that naive.  Being on the chronic illness road for over 2 years means that I have learnt a lot of things, including that there is no cure (and there won't be one in the near future either) for any of the health conditions that I am dealing with.

Sometimes I just want them to reach over, hold my hand and tell me 'That really is no fun, and I'm here for you.  How about we do some blood tests to see what your so and so levels are like?'  Or perhaps suggest what topics are most important for me to discuss with my Specialist next time I see her?

It isn't all about pulling out your prescription pad and giving us more medications.  It's about compassion, and that is what I think is most lacking a lot of the time at my appointments.  It is just a small thing to reach out to a patient and let them know that you acknowledge what they're going through is tough and that you are here to support them, but it can make all the difference to someone who is travelling a long road through chronic illness.

I often feel left adrift and on my own between appointments with the Specialist who is managing my health conditions, so support from my GP is paramount on a day to day basis to help us get through.

So to my GP, as well as trying to take care of myself, I will try to take care of you so that you don't get burnt out and dread seeing my name on your patient list.  But the effort goes both ways, so please try to take care of me too, and support me when I need it most.

Thank you.

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.