Day 6 of Endometriosis Awareness Month

Day 6 of #theendophotochallenge2018


Years with Endo.

I've been diagnosed through surgery with Stage IV Endometriosis for almost 15 years now.

However, I've been suffering for 23 years with strong symptoms and have been dismissed along the way, at one point the professionals had me believing that the pain was all "in my head".

Even after I was diagnosed people still didn't believe how badly I was suffering bar one and she knows who she is. She has stuck beside me through every treatment decision, fought hard for Doctors to take me seriously and ultimately get me my diagnosis.

She has been through every up and down with me, talking surgical and treatment options over with me time and time again to make sure that I could live with my choices as over the years the sacrifices have just gotten bigger and not necessarily for the best. But up or down, stormy or calm she's always been there when others have scoffed or simply walked away because my diagnosis was just "too much for them to handle".

You need a support system with this disease, wherever you can find it, but you need one nonetheless.

Stay positive and I'll see you tomorrow for the next challenge.

Andie

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

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 

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

#1 after Primolut (Warning, bad Endo face)

I'm glad I made the most of my painfree time. Because here comes the flare up and the pain.

So I've just started my first period since coming off Primolut. It was 27 days, not bad for me. I'll take that all day but it's still early days yet. The first day which was the 19th wasn't too bad pain wise. I was in pain but I still manage to leave the apartment and spend a lovely afternoon with my Mum and Sister. That evening though I began to feel very uncomfortable,  too hot, legs were cramping and I knew I needed to get home.

The night of the 19th was horrible. The pain kept me awake. It felt like both ovaries were being pulled, stretched and twisted. The bleeding as usual is heavy, a lot of black clots which sometimes are painful to pass. I was exhausted yesterday. Literally had to crawl to the bathroom I was in that much pain. What worries me is the painkillers I am on aren't doing anything. I'm not getting any relief this time. I tried having a bath, it just irritated me more. Tried breathing exercises for the waves of muscle contractions and this was somewhat helpful. It helped to focus on my breathing to get me through those intense bouts. Like a ripple crossing my pelvis, the contractions come and go but are so extreme they have made me collapse and cry out with pain.

I also tried meditating, just clearing my mind and using some relaxation techniques I have learned. It was like being interrupted by a demanding toddler. The pain wants my attention all of the time.

I'm thinking I may try the Castor Oil Packs. In this weather keeping a heat pad on its so difficult. You run the risk of dehydration if you're not careful :-) Plus with the hot water bottle I accidentally burned my leg and it blistered. Don't want blisters on my stomach.

The boyfriend keeps telling me basically how he has no faith in the treatment here in Ireland and believes the only way for me to find relief is through surgery. He wishes strongly that I would visit his homeland and see Doctors there.

I'm not sure. I've reached my limit with Doctors to be honest. Treatments that haven't worked and now feeling like my only option is progesterone or nothing.

I'll look for an alternative thanks.

Hope you ladies are all hanging in there.
Love

XxxX