"Health brings a freedom very few realise until they no longer have it" - Bronnie Ware

Let's sort out some of the worries that we may come across while dealing with this chronic pain from an invisible illness that still a lot of people do not understand.

Chronic pain can kill you. No, but it can have a major impact on your quality of life. Seek help before the despair sets in. Talk to a friend, your Doctor or a counsellor. Certain situations may prompt suicidal feelings if the pain becomes unbearable. Don't let it go this far. Take your pain seriously.

Dwelling on pain won't make it worse than it already is. The psychological suffering that comes with physical pain can certainly make you feel miserable. Dwelling on the pain in your mind can help emphasize it.

Note that although we may look healthy a recent study of the US Census Bureau showed that approximately 96% of people who live with an illness have an illness that is regarded as invisible.

Depression is 15-20% higher for the chronically ill than the average person. (Rifkin,A)

Anywhere from 30-50% of women with Endo experience infertility. It is claimed to be one of the top three causes of infertility. One of the most treatable yet the least treated. (American Society for Reproductive Medicine)

The lack of visibility to this illness can be both a blessing and a curse. Because there is no way for people to know when we are in pain we don't get offered seats on the tram or the bus, to gain that little bit of respite. Yet we don't have to face the prejudices that many people with visible illness' or disabilities face.

It's difficult for us to ask for help. Because we've become so good at hiding our pain,wearing that mask asking for help can seem like failure. But everyone needs a hand once in a while. It's ok to say you're having a bad day.

Endometriosis wears us out! We get so sick and tired of it that we're sure others are sick and tired of it too. We just want to withdraw from the world for a while. Verbalising this comes easier to some than others. Practice it so you don't wound those who are close to you. They will understand that you need some time. Just don't stop communicating with people. They will wonder why you've become so isolated and feel as though you are cutting them out of your life. In future when you feel like you need to withdraw tell at least one other person but don't forget to resurfuace.

Gentle well timed "education" can help your loved ones, spouses, partner etc to deal with this life-changing illness.

Be honest with your family and friends. Tell them what you can and can't do. Maybe you can't do that 4 hour shopping marathon but one hour on a good day is better than you cancelling all together.

Be aware that there are going to be people along the way who will question your limitations and just not be able to understand what you're going through. If you have acquaintances who undermine your self image, your health and general well-being it may be time to re-evaluate your relationship with these people. You need to protect yourself.

Look after your mental health. It's every bit as important as your physical health and can have a major impact on how you view situations.

Be good to yourself. Relax, learn yoga, meditation, tai chi perhaps or even simple breathing excercises. These can all help to improve your mood and indeed aid you in your anxious times.

XxxX

Keeping faith

4:10 a.m Sunday morning. I'm woken from a deep sleep by pain. I immediately stumble into the kitchen to fill up my hot water bottle, mental note really need to get a new heat pad. Groggy and uncomfortable I try to decide whether I should try to occupy myself with a movie because I know I'm not going to get back to sleep. I take my painkiller's hoping they will take the edge off and decide to climb back into bed and read my latest JD. Robb on my Kindle app to distract myself. I manage little cat naps, dozing on and off until the heat is gone and I need to refill. It's approaching 8:00 a.m when  I finally manage to drift off and I get a few hours rest. 

infertility.about.com

I decide that I need to get out though and push through the pain. Secured with my painkillers in my bag, my remedy I have been taking which is of more use than most pills I've been prescribed I go to visit my Mum and have a lovely afternoon with her. My pain is mainly centred on my left side, around my left ovary. It's the more active spot and there are times I would love to have a camera to hand to see what's actually going on. I know, you're thinking that I should go and have a lap done but it's not really that simple in my situation. From what I've been told they (Doctor's) can only roatate the ovaries so much before they become damaged plus with stage IV they know it's going to just grow back so they are only willing to operate if I want to conceive straight away.

More and more I have begun to establish my own faith. I trust in my belief's and when I'm at my worst I'm finding out more and more that that's what's getting me through. To know that it wont always be this way, that there are good days and bad and to know that I have to love and understanding of my family and friends is something I need to show more apprecaition for. Recently I got so bogged down in my own thoughts. I allowed my fears and old issues to overwhelm me and instead of talking I tried to shut the world out and "fix" myself. When you have a chronic illness you feel as if you are always giving out or moaning that there is something wrong with you and then on top of that for your mental health to suffer well let's just say I became consumed in sorting myself out and making myself a better person that to the people on the outside it seemed as if I was trying to cut them out of my life. 

As a human I know I'll make mistakes and learning that it's ok but not to hurt people on the way. I have no problem in apologising for my actions and the things I have said and done that have affected certain relationships. I will just try my best each day and keep talking so my thoughts don't get out of control again. Dealing with this is one thing. I know it's never going to go away but I need to make the best out of my situation. 

www.experienceproject.com

Today I am having a very bad flare up. I've my study materials beside me as well as my copy of "Human Chain" by Seamus Heaney. I'm not going to let this pain win. I collapsed while cleansing my spare room with Frankinscence but a slight graze on my hand is nothing to worry about. I will not take this lying down. I will however respect my limitations when I'm in this amount of pain and trust me I'm not likely to climb a ladder or do any heavy lifting today. But there are things I can do. I can stay positive. This is only temporary. I can enjoy my book, study and write. It's all about perspective and faith. I will light my candles and cast my spells and that too shall bring me comfort. 

One day I hope I will find a solution, a compromise where I have a quality of life, where I don't have so many bad days, where my body feels like my own again and where my dreams can be put into action. Until that day comes I will keep my faith. 

Hope you lovely ladies are all keeping well. 

XxxX

Lack of Respect? Decide for yourself.

Late last night a friend drew my attention to this article and asked me a very interesting question. Why is it that people don't show more compassion for Women with Endometriosis?

My first reaction was that they don't understand. A lack of awareness perhaps. If it's not happening to them then they're obviously not thinking about what it could be like for someone else.


He then came back with the argument that people show compassion for many other illnesses even though they may not have experience with them so what makes this so elusive, so hard to wrap your head around. Why is it that when most people hear that you have Endo and you begin to explain what that entails that the reaction is "oh, so it's just like  a bad period then?"



According to Dr. Zorba Paster it's due to a lack of respect. Read here for yourselves his perspective oon why there needs to be more understanding for this chronic illness.

http://host.madison.com/news/local/ask/dr-paster/dr-zorba-paster-endometriosis-symptoms-aren-t-in-your-head/article_c71461ce-8439-5f7a-bc3c-0e2188e46124.html

Rambling and a thank you!

Back in the saddle, so to speak. I've been very overcome with emotions this week. From good to bad, happy to sad. It's been quite the rollercoaster but I think I have, mostly a handle on myself. Old anxieties have crept up from the crevices of my mental filing system to test me once again. Although my legs have been like jelly, my hands shaking uncontrollably I've got through these recent bouts of panic. My Endo seems to have settled again which is great cause for happiness. It really does feel as if my body is fighting back to regulate as much as possible and after all these years of treatments and side effects I am absolutely thrilled to have some sense of normailty. I have been using some relaxation techninques I've learned over the past few years and also meditating.

Yesterday I was going through old paperwork, deciding what to keep and what needed to be thrown out. I stumbled upon a gag present of a giant lollipop that I know to be at least four years old. Unopened but still,  I was turning into a bit of a hoarder. So the clearing out and cleansing process was begun. There were a few minor stings, one in particular caught me by surprise. I stumbled upon a pair of booties I had bought some years ago. They are still in the bag with the receipt. It's strange the things you forget about and yet the effect they can have on you when you find them. It got me thinking. I'm not where I thought I would be at twenty-eight but I'm not doing badly either.

The past two weeks I have been really unwell. I had quite a bad chest infection and was on antibiotics plus the Endo flare. I then had three cysts burst on my left ovary. It completely drained me of all energy. I couldn't concentrate on studying. The information was out of my head the moment I read it, nor could I go out because I physically couldn't move due to the pain. I fell twice. The first time I got a nice whollop on my cheekbone, thanks to Arnica cream and tablets though I didn't bruise and the redness is pretty much gone now. The second time I just grazed my hand but my head took a nice bang. Other than that I've been doing as I was told. Heavy bleeding=elevated legs=plenty of fluid=iron=rest. The formula the hospital always drilled into me. When you have chronic pain like this some days are inevitablly worse than others.

It got me thinking of the whirlwind this year has been so far. I look at the calendar and wonder where the months have gone. I'm at a completely different place than I would have thought even six months ago physically and mentally. It's been like coming up for air (corny, but it's the only way I can think of explaining it). I've been through some changese and since this year's Endo March I've found greater support and understanding and have reached many more people with this blog than I ever thought possible. I think really what I'm trying to say is that I am grateful. For every one of you who read this, whether you've been with me from the start or have just begun the journey yourself. For my very understanding family and friends, my Mum and Bobi especially. For my boyfriend, who from the beginning, when we were just friends would read my blog and has never made an issue of my Endo. I know I f**k up sometimes. I can be an awful scatterbrain. I get overwhelmed by emotions and sometimes zone out into my own thoughts.

I have weaknesses, flaws and I'm going to make more mistakes long before I'm through here but I am grateful for the wisdom I have gained through each life experience. My tastes have changed of course. I'm learning each day and will never know enough to satisfy myself. I have promised myself though to make the most of each good day because you never know what tomorrow will bring. I feel spiritually I am finding my centre, a place where I feel connected and at ease with my beliefs. My curiousity leads me to seek out answers that most likely aren't available to me and yet I'll still look. It's about the adventure. A wise woman in the form of my Mum has a saying "what's for you won't pass you". It's become something of a motto for life really and it's a nice positive way of thinking about things.