A smooth sea never made a skillful sailor.

memegenerator.net

Sleep is overrated right? I did manage to drift off around 3:00 a.m but then woke up just after 4:15 a.m and could not sleep. I had a pillow under my legs as they kept cramping all night. My calves are literally so sore when I'm moving. Even having then elevated my ankles hurt and then the spasms shoot straight up  my calves. Then there's the thigh pain. Literally, a lot of people don't realise the other aches and pains that get triggered when you're having a flare up. My shoulders feel like I have a bag of potatoes strapped to my bag, especially between the shoulder blades. Tender breasts, not to mention a lovely heat rash under them which I'm currently staving off with  Zinc Oxide.

To keep with my promise I made this year below you'll find three photo's of me over the course of this morning. Honestly, I've had a little cry because the pain has just floored me. My back, pelvic area, ovaries, abdomen, just everything is so sore. I'm hoping that this all just means that my body is still regulating itself as I am off treatment at the moment.

Feeling completely overwhelmed 8:00 a.m

Meltdown over. 

Exhausted and fed up 9:15 a.m

Please, I just need a little break 10:43a.m

OK, I had to take a break there. Using my breathing techniques after I had a little outburst. Sometimes, although I try to stay positive in my mind my situation just drowns me so releasing that energy and letting it go rather than bottling it up is the best way I've found to deal when this happens. It's not a regular occurance because I do tend to let things build in my head (which I'm working on) but dealing with it, just recognizing the emotions I feel is a much healthier way of coping.

So I am once again partially horizontal, attempting to study but honestly can't concentrate. Irritated and frustrated but I am reminded time and time again that it's only temporary. Just like a storm this too shall pass.
Meanwhile, I will read, try to nap and hope I feel a bit better later on. Looking forward to seeing my Mum this evening. The weather is looking good enough for a BBQ and of course the World Cup final is on. Mum is up for Germany, Rodney Argentina so that in itself will be entertaining for me.

Summery blue toenails. Cramped and swollen legs elevated now.

My wonderful boyfriend Rodney is starting his holidays today and I'm looking forward to spending some quality time together. I don't care if it rains.

Wishing you all a lovely, restful Sunday. Love to my endo Sisters and thank you for all of your kind words and support.

XxxX

Even the orchid has an Endo face...

pinterst.com

During the night the pain began. Slowly at first, just a small ache. Nothing to moan about. Gradually, the pain increases. I can feel it right down to my ankles which are now swollen. I elevate my legs for a time before attempting to go about my day. I think I manage pretty well, getting study done, some household chores and I even manage to gett my wall art up before I start feeling that overwhelming tiredness. The fatigue appears as if from nowhere, yet I know it's been building. My legs are sore and my ovaries are beginning to pull. It's time to get my water, pillows and a nice cup of tea. I settle in, as comfortable as I can get and manage to write up an assignment.

ladycarehealth.com (I'll let you know if this works for me)

As I am writing this post I am somewhat horizontal, packed up with pillows and cushions to keep my legs elevated (courtesy of Rodney). Dinner has just been made, which I can't even eat because I'm so bloated and uncomfortable there just isn't any appetite there. A movie "Afterlife" (fairly decent) is about to go on before we watch Brazil -v- Holland (I've a soft spot for the Dutch) play for third place in the World Cup, which of course they win.I have taken painkillers of course but we're all used to our usual merrigoround with Endo. Keeping myself calm and trying to remain relaxed is the key for me here so the pain doesn't take hold.

strikerno9.blogspot.com

Hoping to have a BBQ tomorrow, with my Mum coming over to watch the final game of the World Cup with us (Germany -v- Argentina, Ozil -v- Messi,) I've promised Rodney I'll cheer for Argentina although if Ozil does score I will be quite pleased. Let's hope it's a fair and intersting game.

Being completely restless I decided to watch "Cracks" after falling in love with Eva Green as you do when you watch Penny Dreadful.

thegeekiary.com

I must say she's only continued to get better with each role I've seen her in.Yes, I know I'm not really discussing Endo here but one can only attempt to describe pain so much until it becomes upsetting. I found the following on twitter and just had to share it with you lovely ladies.

(twitter.com)

I will wrap this ramble up with a goodnight to you all as the clock approaches 1:00 a.m. Beyond tired now I will head to bed, sit the pillow under my legs and read my latest JD. Robb until sleep comes. 

Till tomorrow, football and hopefully a less painful day.

XxxX

Hope, strength and an Endoplation

Many of you are trying to conceive, some of you may have already so congratulations. For the rest who wonder if we'll ever experience that particular joy my advice is to keep your chin up. Almost every other day I see women on my support groups announcing their pregnancies and continuing to support and wish the rest of us luck. There is one thing we can all hold onto through our difficult times whether or not your aim is to become pregnant. There still remains;

The bonds we have created because of and in a way despite this illness are incredibly strong. Most of us will never meet face to face but we outline the most intimate details of our lives. Why? Because it's not giving out, complaining or moaning. Simply swapping information with someone who is going through or has gone through what you may be experiencing at that particular point in their life. However, sometimes explaining to people can be a right pain. How do you make others understand?


Whilst browsing through my usual support group pages I came across this photo and thought I'd share it on with you all. It gives a really good explanation of Endo or Endoplation if you will, what we go through and comes very close I think to describing how it feels. Please, take a moment to read it, share with your partner or familial support. Maybe even that friend who doesn't quite "get it". I believe this is a very powerful statement and by educating people we can hope to not only create awareness but perhaps even to help some other women get diagnosed. Who knows?

Ours is a battle. A constant, uphill struggle. Yet many of the women I have met with this illness are among the strongest I know. We can cope with a lot more than we give ourselves credit for and while the emotional pain of infertility can't be overlooked we strive to fight on.

Love to my Endo Sister's as always,

XxxX

Awareness-Body & Mind

After another rough night I am feeling worn out today. I was up and down like a yo-yo last night. Not finding comfort anywhere, too hot, too cold, I couldn't get comfortable lying down, sitting up pacing up and down just wishing for the pain to pass so I could get some rest. It was a pretty bad night. I'm doing what I can right now which is to keep myelf hydrated and to look after my diet (I tend to skip meals especially when I'm studying, a bad habit I've fallen into), practice my breathing techniques so my anxiety doesn't overwhelm me when the pain gets really intense and to remain positive.

"Your body hears everything your mind says"- Naomi Judd

Yes this is indeed my normal but I think rather than getting down about it learning to understand my limitations is helping me a lot. To be aware that there's a reason why I feel this chronic fatigue. It's nothing to do with laziness or an unwillingness to move. It doesn't mean that I cannot do things. I just have to set a pace and try to avoid getting frustrated with myself on those really bad days when I literally am unable to move or even concentrate on anything.

Being aware of what is going on with your body is something I have found really helpful. It's funny how much pain we can push through yet when do we say enough is enough? There are so many women still undiagnosed, still suffering because they are just pushing through their pain, getting through each day as best they can and although very admirable it doesn't need to be this way. 

the familypatch.com

Creating awareness and educating people about Endo is one small step in the grand scheme of helping Women worldwide to finally realise that it's not ok to be in so much pain all of the time or to have these unbearable, uncomfortable and sometimes emabrassing symptoms. 

The next time you have a minute alone take a moment for yourself and really listen to your body. Was that pelvic pain there yesterday? Has it been getting worse or better? That dull ache in your back become more persistant? Frequent headaches or even shoulder pain can indicate that there is an imbalance. We are designed in such a way that our system alerts us when something is out of order so that we can attend to it much like you would a cracked brake line. It's something that we all overlook as our lives grow busier and the wonder of technology takes us further from  nature.

flikr.com

I personally feel that it's beneficial to reconnect from time to time. Get in tune with yourself. Walk barefoot in the forest, along the beach or even out your back garden. Don't have a garden? Sprinkle some sand or muck on your patio, balcony or floor. Allow your feet to sense the earth again. It will rebalance you and you will feel energised by this simple way to get in touch with the natural world. We've become so busy between laptops and smart phone, tablets and 3D TV's when do we actually take the time out to simply clear our mind?

I find meditation quite useful for me. When my mind starts to fill up with thoughts and worries, when I feel I am starting to lose control I try to meditate and practice my breathing excercises at the same time to get a hold on things. For me this form of relaxation therapy suits me as there is no fear I will collapse and injure myself because I will sit or lie out on the floor. The risks are very low to me so I feel safe, enabling me to relax easier (it has taken a lot of practice and I've had a few bumps along the way). It might not rid me of the pain but I feel it helps to prepare me mentally for the challenges physical pain brings. 

weefolk.com

If I tell myself I can handle it, then surely I will. There are times of course where I feel like it's a never ending cycle and sometimes I'm convinced the clock is ticking backwards just to screw with me. But, all in all I feel that at the moment I have my head wrapped around this thing. I wont let it bring me down. There will be good days and bad ones. But I just need to remember that the bad ones are only temporary. I'll leave you with one final thought. A quote I came across and if nothing else it will get you thinking. 

"Natural forces within us are the true healers of disease" - Hippocrates

endometriosisawarenesskw.weebly.com

Hope my Sister's are all doing well. 

Love & hugs 

XxxX 

"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