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.
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