build an emotional survival guide

After much stress and needless worry my monthly visitor arrived last Friday night, it seems that my week spent worrying if my period would ever return was the calm before the storm; aunt flow arrived with all the fury of God’s own thunder. Friday evening was painful but I woke in the early hours of Saturday morning convinced my right ovary was going to explode. I lay in bed contemplating going in there and cutting the damn thing out myself; the extensive knowledge of the female reproductive system that I have developed over the years as an endo suffer made me believe I’d have done a good job digging the ol ovary out. I opted instead to reach for my trusty pain meds. By the time my alarm went off at 8am I was sufficiently dossed up on my usual cocktail of codine, naproxen, buscopan, tramadol, and paracetamol to numb the pain down. I got up, made my way to the bathroom and like a fool I proceeded to wash my hair – this was obviously more exercise than my fragile right ovary could handle because she decided to throw a sh*t fit like nothing I have ever experienced (which is saying something). I came in, sat on the edge of the bed and rocked back and forth, unsure what to do next. With Chris’ help I gathered my thoughts, found some strength and started routing for my oxynorm (it had been a few weeks since I have had to resort to my oxynorm). With my oxy friend completing my morning cocktail I began to lull into a woozy state of unorthodox comfort, I got my heat pad on and started to feel like I could stumble through the day.

My brother and girlfriend were home for the weekend so I spent a lovely weekend with my family being well looked after. I maintained my cocktail all weekend and kept my heat pad semi permanently attached to me. By Monday the pain was lessening, my right ovary continued to throb right the way through until Wednesday but I no longer required the tramadol or oxynorm. Initially the level of pain I got scared me quite a bit but having read around I am lead to believe the first two periods following excision surgery can be particularly bad. With this in mind I don’t believe the endo is to blame, I am quietly optimistic that the beast is dormant after the surgery but I guess time will tell.

But I want to take you back to the early hours of Saturday morning... As I lay awake contemplating my one woman ovary extraction I was reminded of how incapacitating pain can be, not just physically but emotionally. Pain can create a hopeless helplessness that is rather isolating, it can also create a dependency on others that can make you feel weak and vulnerable. For me I see these thoughts as irrational, I don’t really believe I am hopeless, helpless, weak or vulnerable – quite the opposite in fact but maybe I am just egotistical. However when I am in the clutches of pain I cannot rationalist my thoughts, I can’t always chase the shadows of negative thoughts, I can’t address the negative feelings. All my energy goes into keeping the pain away: into breathing exercises, into keeping a smile, into putting one foot in front of the other, into reassuring people around me that I am managing – so much so I forget to keep enough energy to reassure me that I am going to be ok, that the pain doesn’t really change who I am or how I truly feel about myself, it’s just that at that moment I am focusing solely on my physical needs not my emotional ones. As I lay awake that Saturday morning and the thoughts of helpless vulnerability crept in I turned around and nuzzled into Chris, like a tiny bird whose fate he held in his hand and I was completely comfortable. It has taken a lot of work to get to this stage, but here I am and I am glad I am. I decided to write this diary entry to encourage every woman to begin working on an emotional survival guide to get you through the dark days and nights.

From most women I have spoken to and for myself one of the biggest struggles we have faced was feeling vulnerable and dependent on another person. It is not easy to need someone, to actually fully depend on another for everything: making food for you, cleaning up after you, carrying you to the bathroom, helping you wash, getting your medication, holding you up as you try to move, having to be chaperoned everywhere you go. Depending on someone can really make you lose your sense of worth, it can make you feel useless, like a drain. It is so important to challenge these thoughts, meet them head on and don’t let them manifest. For me, I always say, communication is key to helping get over this hurdle. My negativity manifested itself as me continuously apologising every time Chris had to help me which I talked about in ‘I am not sorry, I am thankful’. I explained to him why I kept saying sorry, I explained how I felt insecure and vulnerable, I explained how I felt useless and like a drain. I was honest with him and since then he says thank you to me when I help him, things I do every day that I didn’t know helped and supported him. You are most likely doing a lot to support and help your person (be it your partner, a family member, a friend), they wouldn’t be there for you if you weren’t there for them. You are useful, helpful and important if you can’t see why get them to tell you, talk about how you’re feeling.

Another fear I faced was that Chris would begin to see me differently; I wasn’t the attractive young woman he fell in love with, I was becoming a needy dependent to be looked after. This fear ate at me, my self-esteem and my body image. One night when I cramped up in the bath Chris came running to help and I sat in a bath, crying, asking him not to look at me. I was ashamed and embarrassed and genuinely believed if he saw me naked and incapacitated he would associate my body as being like a patient and not his womanly girlfriend. When he got me back to the bed and dressed in my jammies I explained all this through uncontrollable sobs. I couldn’t even look him in the eyes in case I seen his inevitable rejection. When I did finally meet his gaze he looked so confused and perplexed. He explained that none of what I had said had crossed his mind. It was all about context, there are times when things are seductive and times when they are not. He asked me did I still find him attractive even though I’d seen him vomit, even though I’ve seen his face covered in blood from a nose bleed, even after getting to see and know him in all the gross and gory ways living with someone lets you see and of course I did – so why couldn’t I see it would work the same way for him. Talk about what makes you feel insecure and scared, I honestly believe it is the best way to help you see yourself through another’s eyes which can make all the difference.

It is very easy to get caught up in all the things you can’t do and forget entirely about everything you can, it is easier to remember your failures than your achievements. When I am having a good day I like to do something I missed doing on a bad day. When I have missed nights out and haven’t had a chance to throw some shapes on the dancefloor because of a flare, I always make sure I take some time to dance when I can. I have danced around my bedroom, living room, kitchen and bathroom just because I can. Chris and myself have two stepped away many an evening. Loosen up and remind yourself that you do have good day too. I keep notes in my phone (I keep meaning to get a mason jar and some nice paper for this) and every time I achieve something that I didn’t think I could, every time I catch myself smiling because something has made me happy I note it down and read it back when I am feeling low. My notes read something like

“Today I was able to wear my favourite jeans, suck it endo belly”

“Today I had plans to meet X for coffee and I didn’t cancel”

“Today my bro said ‘love you sis’ on the phone”

“Tonight we sat round watching trailer for upcoming films we would like to see”

It is important to mark your achievements and happy memories – they don’t have to life changing moments, they can be the simple things that make you warm and fuzzy. If you’re more organised than me, go get yourself a mason jar and some nice paper!

If I am being 100% honest I have found that after numerous occasions of cancelled plans I become very defeatist; I am in pain, I cannot go out for coffee, food, cinema and therefore I can do nothing, so I cancel the plans, retire to my room and resent my stolen youth. I become very black and white about being able to spend time with my friends, there is no grey shade, there is no middle ground – but this isn’t strictly true. Sometimes I can think outside the box and make plans that work. Last Friday I had plans to go to my friends for dinner, she text that morning to make sure I was still good to come and I said I was starting to feel sore so she aptly replied that the dress code for dinner was PJ’s and slippers, when I got to her house she had a mini hot water bottle for me. We curled up on a seat each and I had a wonderful evening. So you can’t go to the cinema, have a movie night in. So you had plans to go to the pub, have a cocktail slumber party. So you were going to go to a restaurant for dinner, light some candles, order in dinner, put on some background music. Try to create an evening customised to your endo needs, I know it’s not the same but if we were honest with ourselves it’s better than nothing and we need to take what victories we can.

So, if you do one thing this week be pro-active and build a survival pack to tide you through the dark times. Since my endo has gotten particularly bad I have become very conscious of how important it is to focus on the good things in your life. I have made an effort to build and reinforce the foundations of what creates a happy me, now the pain doesn’t quite hurt like it used to… emotionally anyway.

x

facebook.com/theendodiary

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  • This rings true with me also. My endo pain is nowhere near as bad as you but I also find myself apologising constantly. If I need him to take our daughter to swimming and ballet lessons as my pain is too bad. If I can't bear him to touch me as I hurt. I apologise for being down and grumpy when I am in pain. He accepts all that and tells me not to keep apologising. I helped him through a severe bout of depression and he reminds me regularly of this. I think we do it as we know sometimes things are better than they are then at that moment you need help and support. He often reminds me of our wedding vows where we said for better or worse, in sickness and in health. They stay and help because they love us. We have to remember that too. I hope today has something good you can write down. I'm suffering today after a night out with lots of dancing. Lots of abdominal pain this morning. Not sure if it's linked but I'll deal with it xxx take care of yourself x

  • I hope you're feeling better and have recovered from your night of dancing! It's really encouraging to hear how other couples work through the endo challenges, you're husband sounds like a true gentleman.

    I hope you continue to help each other.xx

  • Thank you for this post Reen_Bean

  • Thank you so much for sharing this, I can identify with so much of this! It can be very hard and isolating to go through all of this, I had a period when I couldn't cope and nearly broke up with my boyfriend because (in hindsight) my symptoms and attitude around them made me want to be on my own, luckily he was stronger than me and we got through this, and have now bought a house together and are very happy! If anything my symptoms are actually worse now, but having (and acknowledging and appreciating) his support, and being sensible with my limitations has made life so much better overall. I am now struggling more at work, but I have been focusing on the bigger picture more and although am in more pain and struggling so much more with fatigue than before I am happier, laugh more and more comfortable with myself than I have been in a long time. I don't have the nice paper and jar, but I am very pleased that I have spent a few hours this weekend preparing my room for redecoration which I couldn't have done at one point!

    Thanks again!

  • Thank you for taking the time to read it. I think there isn't much information about the emotional side of endometriosis, so I always thought I was alone in how I felt. It has been so comforting to hear another woman has felt the same, thank you for your honesty back.

    Well done on working through everything with your boyfriend and congratulations on your house!xx

  • Thank you! This forum has really helped on occasion, particularly posts like yours! I don't even know if I have endo, a lap last year (non-specialist) said not, but have now got a specialist appointment for Jan for a second opinion, but the symptoms are so close that whether or not that is what I have, this seems to be the place to come for support! I think the emotional side becomes more important over time, as it is so wearing to have an ongoing condition such as this, that sometimes the symptoms in themselves don't seem to be so debilitating at one particular time or when explaining to others, but when you multiply this day by day over time it's indescribable the impact it can have! It sounds like you've got a great partner too - I say sorry too much too, but you're so right about the thank you's going both ways! :)

    xx

  • I had my first laparoscopy at 16 and they didn't find any endometriosis apparently. But I was diagnosed last July at 25 with endometriosis, so extensive it would definitely have been there when I was 16. You are definitely right to get a second opinion. Good luck with getting a diagnosis for what's consuming your life so much. Let me know how you get on.xxx

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