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.

So Many Ideas...

Blogging is a strange thing to me.  In the first place, I never thought I would start a Blog for lots of reasons, including the fact that no one would probably read it, and also that I'm quite a private person, so didn't think I would have it in me to spill my thoughts onto the internet!  But I took the plunge and started, and I'm still coming back, so part of me must enjoy it...

The truth is, hardly any people that I know in real life know that this blog exists, basically because I haven't really made a point of talking about it.  I think part of it is shyness, and the other part is a fear of being judged by others about the fact that I write about my health issues and life in general and post it on the internet.  I'm pretty sure that most people would think that was one of the strangest thing you could do when you have a chronic illness, to write about it for the world to see.  I know, even reading those last couple of sentences back makes me think 'What the?  Why on earth am I writing about my Endo journey online so that a whole lot of strangers can read it?'

Strangely enough though, writing about what's going on in my Endo life on my blog is soothing.  It's quite cleansing to write about my frustrations, health concerns and issues that I think are important, and I guess a Blog is just somewhere to try and put that jumble of thoughts together.  Quite often, I feel the need to let off some steam when I have a lot of thoughts running around in my brain, and blogging is just one of the ways I manage my stress levels when everything gets to be too much.

Although, in saying that, I'm not a very good blogger really!  If you keep on scrolling down my Blog pages to have a peek at older posts, you will notice that there are quite a few gaps in the dates.  In some places, it looks like I haven't written anything for months!  This is not the case though...

My Blogger account is full of draft posts - yes really!  When ideas strike, I open up the web page or app and jot down a title, or a few sentences that I think would make a good post.  But, as with many things when you live a life with chronic illness, that's often as far as it goes, despite my best intentions.  Those ideas don't always make it to the blog for many reasons, including lack of energy or focus to write, loss of  inspiration or motivation to write on that topic, or just plain old writer's block.  Basically, sometimes I feel the need to blog it out, and other times I can go for many weeks quite happily without feeling the urge or inspiration to write at all.

I could commit to writing on a certain day of the week, or writing so many times a month, but I'm just not going to do that.  My Course of study starts tomorrow, and that's something I will definitely use deadlines and planning for, more so than other things like blogging where it is a choice whether or not I choose to do it that day.

 I don't need the added pressure and stress that comes with yet another deadline to meet, or the disappointment of not doing what I promised myself I would, because that just doesn't help my emotional state of mind.  There are many things I do regularly and commit to, and I just don't want blogging to start to feel like a chore - I want to enjoy it, and be inspired to write when the feeling strikes.

So, I'll write when I write, and if you don't hear from me for a while, don't worry!  I'm still around, probably just dealing with a downturn in the health department or a short term, acute case of writer's block :-)

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...

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.

                              

30 Things About Living with Endometriosis You May Not Know

I'm in quite a bit of pain today.  The new Pill that is supposed to be helping with my pain did reduce my pain a little for a few days, which was a nice break. However, the last few days, the pain has escalated again and I am struggling.

Blog surfing is a good distraction technique and I discovered this list of questions on a couple of other Endo Blogs, so I thought I would give it a go.  

For me, some of these questions are quite personal and reveal more about my illness and how I manage it.  Feeling a bit shy about sharing, but here goes...



1. The illness I live with is: 

Endometriosis.  This is a painful condition where tissue that normally lines the inside of your uterus - the endometrium - grows outside your uterus.  In Endometriosis, displaced endometrial tissue continues to act as it normally would - it thickens, breaks down and bleeds with each period.  Because this displaced tissue has no way to exit your body, it becomes trapped and causes severe pain.  Surrounding tissue can become irritated, eventually developing scar tissue and adhesions - abnormal tissue that binds organs together.

I also have Adenomyosis, which is a condition in where the Endometrium (uterine lining) implants itself inside the muscular wall (myometrium) of the uterus, where it's not supposed to be.  I have been told that my uterine wall has a Venetian Blind appearance, which is an odd description, but is how Adenomyosis can appear and show up on an Ultrasound Scan.

Adenomyosis is NOT the same as Endometriosis.  However, many women who have Adenomyosis also have Endometriosis.

Just like Endometriosis, the cause of Adenomyosis is unknown.


2. I was diagnosed with it in the year: 

2014 


3. But had symptoms since: 

2007 


4. The biggest adjustment I've had to make is:  

There are lots of answers to this question, but what immediately springs to mind is getting used to being in hospital and seeing doctors on a regular basis.  Also, having to tell the whole story about this year over and over again because they say they 'want to hear you tell it in your own words' when they could just take the time to read my file, even though what is quoted is quite often incorrect.  I have broken down in tears trying to explain to doctors about everything that has happened, because I try to live each day as it comes and reliving everything is painful and hard for me emotionally.


5. Most people assume: 

Most people haven't heard of Endometriosis and don't know that it exists. Those people who like to think they know about it, think that it just means you have painful periods and the rest of the time you are fine.  This is definitely not the case as I am in pain every day and have other symptoms including nausea, sleep issues, bloating and chronic fatigue.  Also, pain relief doesn't work well a lot of the time, so when people say "Oh, just take a Panadol", it doesn't work like that.


6. The hardest part about mornings are: 

Waking up in the morning and due to the fatigue, not feeling like you have slept at all, even though you have.  Then getting out of bed and your body realising it's awake, which is when the pain and other symptoms really start to awaken and kick in.  Also, wondering how today is going to be as you have no control over it.  Will this be a good day and will I manage?  Or, will this be a crap day where I'll have to grit my teeth and suck it up?


7. My favourite Medical TV Show is: 

I don't watch Medical TV Shows very often, since my life this year pretty much is a Medical Show all of it's own.  However, when I do watch them, my favourites are 24 Hours in A & E, One Born Every Minute and The Night Shift 


8. A gadget I couldn't live without is: 

My phone.  It's where I do most of my blogging and emailing and how I stay connected to the outside world and also has lots of music loaded onto it.  Music is one of the things I rely on as a distraction technique and I can tailor what I listen to depending on my mood and my pain levels. 


9. The hardest part about nights are: 

Sleeping has been an ongoing problem for me since December 2013 and I haven't had a full, decent nights sleep since then.  I am now on medication to try and get me to sleep, which does help, but still can't replace the deep natural sleep that I used to have.

Pain and other symptoms can feel much worse at night after my body has struggled through a long day.  There is nothing else to focus on lying there in the dark, so it can be hard to distract yourself and ignore the pain.


10. Each day I take 6 tablets: 

6 is a normal day for me at the moment, but depends on what other medications my doctors might be trying or if I am on any natural supplements. On days when pain or other symptoms are worse, additional meds may be required.  One day, I would like to be taking 0 tablets, but I will take what is necessary to control my condition and get me through the day, as long as my sensitive body doesn't have too many side effects.


11. Regarding alternative treatment I: 

I've been to a Naturopath and taken multiple natural supplements, but after a few months I realised that nothing was really making a difference, so I have left the natural remedies behind for now.  I am receiving some natural healing at the moment alongside my prescribed medications.  I'm just hoping that my Gynecologist can help me to manage my pain soon. 


12. If I had to choose between an invisible or visible illness I would choose: 

Invisible.  As hard as it is to try and explain an invisible illness to people and no matter how frustrating and isolating it is, at least I don't look really sick all the time (although some days I do).  I appreciate being able to look in the mirror and look okay because if I looked the way I feel, it would scare you and everyone would probably take one look at me and run away screaming :-) 


13. Regarding working and career: 

I had to take Term 1 of this year off my job as a Teacher Aide at a school for young people with special needs, because I had been in hospital twice already and knew I would be having further surgery.  I have since had to leave my job altogether and have not worked at all this year as my illness has really kicked my body around and being in pain and having no energy makes working impossible right now.

I loved my job and my aim is to one day return to working with young people with special needs, although it may have to be in a different way now than how I had planned due to my ongoing health issues. 


14. People would be surprised to know: 

How much Endometriosis affects your entire life.  Your relationships with your family and friends, self-confidence, future plans.  So many things are affected and having Endometriosis can really take a toll on you emotionally - sometimes you just have to have a good cry and let it all out. 


15. The hardest thing I've had to accept about my new reality has been: 

Accepting that I am going to have to live with this for the rest of my life. I have had surgeries, and that has helped a bit, but I am never going to go into remission or be cured.  It's all about managing my condition and hoping that I don't require more surgery in the near future.



16. Something I never thought I could do with my illness that I did was: 

Talk about it openly and publish a blog on the internet!  I would also like to talk to some other Endo girls my age - who knows, maybe they will find my blog and say Hi. 


17. The TV commercials about my illness: 

Do not exist.  It's so frustrating that there is no awareness about Endometriosis when I have heard that it is more common than Asthma or Diabetes.  Women with Endo may be strong and put on a brave face, but we need support.  It is especially important for all of us to do what we can to start discussions about this, because I don't want any more young women to feel alone and like there is no one who understands.


18. Something I really miss doing since I was diagnosed: 

Going out whenever I want and for as long as I want, without wondering if I am going to be in pain and monitoring my activities due to my chronic fatigue.  I never had to think about these things before. 


19. It was really hard to have to give up: 

My 'free as a bird' attitiude.  I now have to think more about what I do and how I look after myself, which can mean that I miss out on family gatherings and events, or don't enjoy myself because of the way I am feeling.


20. A new hobby I have taken up since my diagnosis is: 

Blogging and Playing the Acoustic Guitar. 


21. If I could have one day of feeling normal I would: 

Spend the day with my close family and friends walking along the beach, going out places and running around with all the energy in the world!


22. My illness has taught me: 

Life isn't always fair and you never know what will happen and when.  I try to live each day as well as I can and appreciate what I can achieve instead of dwelling on what I can't do right now. 


23. Want to know a secret? One thing that gets under my skin is: 

People who try to push advice on you or convince you to do things when they have no understanding of your illness.  I know they are only trying to help, but sometimes trying to explain to them why it's not a good idea doesn't even make them stop and think!


24. But I love it when people say: 

The simple things like "I'm here for you" or "Let me know if there is anything you need."  Even a simple smile or hug can make all the difference. 


25. My favourite motto, scripture, quote that gets me through the tough times is: 

How could I choose just one?  Positive words and quotes are really helpful when I am feeling down and need a reminder to be positive.  This one was actually on another Endo Girl's Blog, but I liked it, so thought I would share it here.

 “... Whatever condition we are in, we must always do what we want to do, and if we want to go on a journey, then we must do so and not worry about our condition, even if it's the worst possible condition, because, if it is, we're finished anyway, whether we go on the journey or not, and it's better to die having made the journey we're been longing for than to be stifled by our longing.” ― Thomas Bernhard 


26. When someone is diagnosed I'd like to tell them: 

Wow!  Where do I start?  First of all, you are not alone, no matter how lonely your diagnosis may make you feel.  

You will need people who are supportive and will take the time to listen to you, so find a GP and Gynaecologist who you feel comfortable with.  It may not be the first doctor you meet (it certainly wasn't for me), but this is going to be an important, ongoing relationship, so make it count.   

Be open with your family and close friends when you are diagnosed.  It will help them to understand your limitations and support you better.

Research, but don't overdo it.  Yes, the Internet is a great resource and it can help you to understand your condition better.  However, be aware of reading forums and other places where women share their personal experiences, as everyone is affected differently by Endometriosis.  There are different stages of the disease and each woman will have a variation of symptoms in both their presentation and severity.  As Dr V has told me, there is a point when you just need to stop googling and focus on yourself.

Trust yourself.  You know your body best and if you feel like things aren't right or you're not sure of a treatment or medication, don't stay quiet.  Voice your opinion and keep telling someone until they listen to you.  Doctors don't know everything (boy, have I found that out!), so ask questions and make suggestions as it will help them to help you.

Finally, having Endometriosis will be something you will have to manage for the rest of your life, but it's not a life sentence.  Everyone's Endo experience is different and you will still be able to live an amazing life, it just might be a little bit different than before.


27. Something that has surprised me about living with illness is: 

People's lack of understanding of how you can have an illness for a long period of time.  It seems like they think you should have just 'gotten over it already' when it's not always that simple.  Like when a member of my family phones up and says 'So, are you better today?' and I feel like saying "What do you think???"  Also, how much your life can change in such a short amount of time. 


28. The nicest thing someone did for me when I wasn't feeling well was: 

Probably my Mum, who has been with me every step of the way.  Sitting with me when I'm in pain and trying to calm me down when everything has just become too much.

Also, Nurse T in the Gynae Ward at my local hospital.  She could just tell by looking at me when I needed pain relief, a cold flannel or some anti nausea meds.  She also took the time to talk to me about everyday things, which definitely helped me to laugh and break the monotony of yet another hospital stay.  


29. I'm involved in Endometriosis awareness month because: 

Endometriosis Awareness Month isn't really publicised in New Zealand.  I would love to change that and build more awareness and support for Endo Girls everywhere.  I've been there, newly diagnosed and unsure, so I would like to help others when they need it most. 


30. The fact that you read this makes me feel: 

A little embarrassed, but mostly happy.  Thankful that you took the time to read a little bit about me and my Endo experience.  Also interested to know what you thought of my blog, so leave a comment or email me and say Hi. 

Diagnosed

I guess my Endometriosis diagnosis came as a relief to me, more than anything else.

No more wondering if what I had been going through was normal or not, because I finally knew that it wasn't.

As my health went further downhill towards the end of 2013, I was taking time off work nearly every month or cancelling my plans so I could be at home.  It was much easier to get through my perwor each month when I could just work through it and not have to be out putting a brave face on even though I was in severe pain and felt rotten.

Things got so bad that I ended up going to see yet another doctor about my periods in December 2013.  I was referred to a specialist just before Christmas 2013 by him, but he told me that I almost certainly had severe endometriosis.

That was the first time any doctor had ever mentioned Endometriosis to me and told me that it was likely that I had it in the same sentence.

I did know a bit about Endometriosis already, as my Mum had it and we had discussed the possibility of me having Gynae issues on several occasions.  Also, she was keeping an eye on me and what I was going through as she was fully aware that it was possible for me to have Endometriosis because of her history.

It was a relief to hear that something was probably wrong as when I had been to see multiple GPs and a couple of Specialist Gynaecologists over the years, they didn't really know if there was something wrong or not and just said to try different pain relief.

That was the beginning of my Endo diagnosis journey.  I will continue to write more about my Endometriosis diagnosis and the events since then in future posts.

Starting Point...

I have made the decision to start a blog about my experience with Endometriosis. 

I'm not sure at this point how much I will share about my journey, since this is a very personal illness, but I do know that there needs to be a lot more open discussion and awareness about Endometriosis.

Women (especially young women like me) need to feel that they can talk about this openly.  I know from experience that it is very easy to keep your pain and feelings on the inside and tell yourself that things are not so bad and that you can cope, but we need to start a discussion.

1 in 10 women suffer from Endometriosis.

That is a huge number, but there is still so little known about this in the medical world.  It can be very hard to get diagnosed in the first place, let alone followed up with good support and information.

If you happen to stumble across my little corner of the internet, then please leave me a comment and say hi.  If you have any Endometriosis related questions, then leave a comment and I will try and help with the knowledge I have gained this year.

Have a great day...