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.

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...

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.

Oh Boy - what next???

If you are squeamish or don't like graphic descriptions, it might be a good idea for you to press the back button and read a different post on my blog.  :-)

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Can't believe this.  I've been on the new pills for just over a week now and they have actually made the pain a lot worse!  What did I do to deserve this?  You take medication on the advice of a Doctor in the hope that it will help (or at least not give you too many nasty side effects) and then it just doesn't.  It's gotten so bad now that I have had to break out the Ibuprofen (which doesn't help much anyway) just to get me through the day.  This means that  things are really bad because I have quite a high pain threshold and can usually put up with quite a lot without taking any meds.

To get it out of my head, I am going to describe the excruciating pain that I am in here.  This is the best way I have thought of to accurately describe how this pain actually feels to me, so here goes...

It feels like someone has split my lower abdomen open with a sharp knife, thrust their hand inside and is trying to grab hold of my internal organs and pull them out through a small slit.  

That sounds like I'm exaggerating, but trust me, I wouldn't make something like that up.

The fact that I get side effects from pretty much every medication I have taken used to bother me, but now I just put up with it.  However, I was definitely not expecting pain this excruciating to turn up.

Don't feel like I have much left in my Bravery & Strength reserves any more, but I'm going to try to keep going and keep fighting this until I am well enough to get on with my life!

                           

Endo Empowered!

On the one hand, I am feeling a bit Endo Empowered lately.  It's like a little celebration every day that I can carry on with less pain than I've had since 2013.  To know that the Endometriosis, Adenomyosis and troublesome ovary are all under control on the pill is a good thing.

But on the other hand, there is the fatigue! The dark heavy cloud that I am living under every single day with what appears to be little or no relief whatsoever.  It's hard to carry on some days when you are so exhausted and lacking in energy, which in turn leads to being unmotivated.

As usual, it's swings and roundabouts in my Endo world.  My job is to just try and find the silver lining hiding under every cloud.

P.S.  Photo below is the view from my hospital window last year.  Pretty nice if you can get a window cubicle as it makes hospital life a little more bearable ☺

Inside the mind of a GP

I was hoping for a little support from my GP when I went to see her this morning.  Since this has all been going on for over a year now and I am really starting to struggle, especially with my worsening fatigue and racing heart.  You would think that a little bit of sympathy and support wouldn't be that hard to get - right?

Wrong!

Talking about my fatigue that has so far lasted 8 months (very briefly) - "You're just tired because your body is fighting some kind of unknown allergy.  "Here, take this antihistamine for at least 4 weeks (even though she's put me on it before and it kept me up at night with terrible stomach cramps and diarrhea until I stopped taking it) and then we'll see what happens.  Oh, and by the way, it will help with your nausea as well!" 

Talking about my mysterious bloated stomach - "Oh, you're probably constipated."  No I'm not, I know what that feels like from when all the pain meds in hospital made me constipated and I would definitely know if I was!

Talking about my ongoing pelvic pain - "Is it worse than before, or just the same as before?"  Yes, it's the same as before, but it was pretty bad before, so shouldn't you be concerned that it isn't getting any better?  "Oh, I'll just make a note of that."  Great, how is that going to help me???

All the "helpful advice" I got from her today was to be told that I was dwelling on my symptoms too much and that I should learn to distract myself and not focus on how I was feeling!!! 

Mum (who comes to all of my medical appointments as my support person and second brain since my memory is so rubbish) stepped in at that point and told GP that I was really positive and pretty much permanently used the art of distracting myself to just get through the day.  I also added that I tend to go and write down what symptoms I am experiencing (and at what level), then just go and do something else.  Basically, my attitude is if I'm dealing with less symptoms that day, then that's great and I will enjoy it while it lasts.  If it's a bad day, then I just do what my body can handle and settle for that.

There is so much frustration inside me right now, as I feel like I am being treated like a complete idiot and every time I go to see my GP they just say "Here's another tablet - try this" with no real explanation about what might be wrong.  Or alternatively just say there's nothing they can do to help (like my last ex GP), or tell me to wait until my next Specialist appointment, which could be at least  3 -  6 months away depending on how long I've had to wait.

My GP also seems to have a low opinion of me when it comes to trying new tablets.  She says to me to "make sure I give this one a good go" like I don't want to try anything new.  This is not the case at all - I will try anything!!!  Just because I had to stop the last 2 tablets that she put me on due to side effects including stomach cramps, diarrhea, extreme tiredness and blurred vision does not mean I am not open to trying new things!  It just means that those tablets obviously don't agree with me.  Then she asks "How do you know that those symptoms were caused by the tablets I put you on?"  Um, because I didn't have these symptoms until I started the new tablet, and after I stopped it they went away - isn't that logical enough for you?

GPs seem to have very little understanding of Endometriosis and how to take care of their patients who have Gynae issues along with other mysterious symptoms in my case.  Also, they never believe you when you suggest that your other symptoms including worsening fatigue and my fabulously bloated stomach (otherwise known as Endo Belly by some of my bloggy friends) could be related to Endo.  They just say "No, those aren't classified as Endometriosis symptoms."  I get better advice from my fellow Endo Bloggers and other young women who are going through similar things to me than I do from any Medical Doctors - isn't that saying something???

OK, enough GP ranting now.  Time for a song to remind me that I can carry on and that one day everything will be all right again.