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Meet a woman who is a Spoonie

My beautiful friend Zoe is creating a new writing venture called ‘For The Sisterhood’, and I was so incredibly happy to be her first interviewee! The article is beautiful, and I’m so excited for the future of ‘For The Sisterhood’. Have a read of the article, then head over to her site and follow her journey for more stories featuring wonderful women ūüôā

For the sisterhood

‚ÄúSPOONIE‚ÄĚ An individual who suffers from a chronic illness

I first met Caroline in 2015 after my own diagnosis with Endometriosis. She was the creator of Endo Frenz, a group for women under the age of 30 years who were either diagnosed with Endometriosis or were suspected of having it.

This page was a way for young women to discuss any possible issues they were having whether it be with health issues, relationships and friendships, or issues with managing pain, as well as finding ways to uplift one another on some of our toughest days.

It was clear from the very beginning, that Caroline, no matter what she was facing, was positive and always focusing on everyone else. This is what I admire about her.

As well as being diagnosed with Endometriosis, Caroline’s other health issues include, Adenomyosis, Interstitial Cystitis/Painful Bladder Syndrome, Gilbert’s Syndrome, Scoliosis and fatigue as well as…

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My New Home

To my long standing readers, welcome to the new home for my humble blog!

To any newbies who have stumbled across my little corner of the internet, hello and welcome!

Why did I decide to ‘move house’ and transfer from Blogger to WordPress, I hear you ask?  I think really that it was time for a change.  A new look and a new home for a brand new and ever changing stage in my life.

So… if you want to, I would love it if you would hang around and travel this journey with me, as I figure out how to actually use WordPress (ha ha!) and also as I share my thoughts on Endometriosis, the universe and everything.

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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…

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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.

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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.
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Being My Own Cheerleader

I know the title sounds cheesy, but that exact phrase was what sparked the idea for this post really, so I’m stuck with it!
Before your imagination starts running wild, no I have not joined a group that wears short skirts and waves pompoms in the air while chanting slogans for football teams!
The word cheerleader applies to chronic illness in my mind as a way to describe supporting yourself.  To cheer yourself on and be a strength that you can draw on when you need it most.
In the 2 and a bit years since my Endometriosis diagnosis, I have ended up with an unusual kind of team on my side, which is made up of immediate family, a few close friends, doctors, other medical practitioners etc. 
But although I have my ‘team’ around me, I have learnt that you can’t survive the day to day chronic illness life by solely relying on your team mates.¬† Sometimes they get tired, burnt out or just let you down when you least expect it.¬†
So, although the team is an important part of your support network, a lot of the strength and will to carry on has to come from within. 
It has to come from you.
Believe me, some days it feels almost impossible to carry on, and you feel like there is absolutely nothing left in the tank.¬† This feeling of being down and hopeless can last anything from a few hours to many days in a row.¬† It’s so important to let yourself have some down time, because it is exhausting being your own cheerleader and always willing yourself to carry on.¬† Don’t let your brain tell you that you are weak for shedding a few tears, or having a day where you just need some time alone to process things.¬† It’s completely natural, because let’s face it, no one can be happy and brave all of the time!
But it is also important to reboot.  To use that inner strength and courage to bring yourself out of a dark patch.  To see the light again and bring that positivity that lies inside all of us to the surface, even if it feels like it is buried deep within you.
Today may be a bad day, a hard day, an impossible day…
But tomorrow is a whole lot of new, a clean slate full of possibilities.  So dig out that inner cheerleader and help yourself through whatever is going on in life right now.  Once you see the light again and realise that what you do have is precious, you will feel more positive and the burden that you carry every day will feel a little bit lighter.
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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.