The fog hasn't lifted...

Lately I feel like I’ve been wearing a mask…I put on the happy and confident face when I’m out in public. Sometimes I am actually happy and confident – so I fit the mask – but mostly I’m not.

Why?

In the past few months some events have occurred and some issues have arisen that have floored me in terms of my self esteem and self worth. I don’t want anyone to feel sorry for me especially, because this is just the way it is at the moment, and I will get through it, and many people have far worse things to deal with than I do.

I am going to share what’s going on though – because I want you to know that times like this happen to me and to everyone, and it sucks, but it is also a part of life.

So, here’s what’s going on:

A few months ago Kirby and I had a major falling out with one of our dearest friends. It was a complete communication break down and it has ended up with us not knowing if the friendship can be saved. I hope that it can be, but I’m not sure it will be. It hasn’t only been the loss of the friend, but also of her family. She has a husband who had also become one of our dearest friends, and she has two little girls who we had become very close to.

It’s thrown me in a way that I didn’t know I could be thrown. I feel lost, anxious, confused, hurt, sad, and wondering just who the hell I am and what my worth is. My motivation has dissipated – leaving me with little energy (mental or physical) to follow up on the things that are important to me. Even reading has become too much. And, as you know, writing this blog just hasn’t happened for a while.

This is not our friend’s fault – she cannot be blamed for the way I am at all. This is just the way my mind and body is responding at the moment.

In addition to this, my endometriosis has come back with all the associated pain and discomfort.

And I also have fibromyalgia. My fibro has me feeling like a complete failure. I am sore in all my joints, I can’t sleep because of the pain, and when I do get to sleep I sleep too much (like the other day I was up for a whole seven hours!), and the sleep is not refreshing. Apparently people with fibro don’t get quality sleep because their brains are wired to be on constant alert – so I can get nine hours of sleep but it won’t be quality sleep. My brain gets all foggy and I start struggling to finish sentences when speaking, or I mix up words, or forget a word completely – like the other day I was talking about succulents, but I couldn’t remember the word “succulents” – so I said “you know, those plants that take up water and keep it in their leaves”. For someone who loves words as much as I do this is very hard to take. My body (my legs in particular) doesn’t seem to do what I want it to do sometimes – if I want to pick up a pencil I may have to really concentrate on getting my fingers to move in the right way to pick it up.

I’ve tried all sorts of ways to address the symptoms of the fibro, but unfortunately there doesn’t seem to be any agreement on the best method or therapy among different professionals. So, that probably means a journey of trial and error until I find something that works, if I ever do. And to be honest, I feel too tired to bother at the moment. After all:

• in my childhood it was trying to find a way to stop me wetting the bed
• in my teens it was trying to find a way to stop having heavy, painful periods
• in my twenties it was trying to find a way to deal with depression, anxiety, and OCD
• in my thirties it was trying to find a way to deal with epilepsy, and to overcome infertility
• and, now, in my forties it’s fibromyalgia…

 I’m tired of having to try and find out how to deal with something every damn decade of my life – at least at the moment I am. I know that my inner strength will come back and I will unleash my inner wolf again…I have to. What’s the alternative? I give up? That’s not me.

Then, I can’t help thinking about what our kids might have been like. Hayley would have been 19 this year, and Jacob and/or Ruby 8 this month. How do I let them go? They are so real to me. How do I get to a point where I no longer think about “what if” they had been born? I guess I won’t…I know this in my heart, but sometimes I just wish I could have an operation or something that would make me forget that I ever wanted children.

I feel like a failure. I wasn’t able to have children, I don’t feel productive due to having depression, anxiety, and fibromyalgia, and I feel like I am letting everyone who cares about me down. I know that the people who care about me don’t see it this way, but I do.

My lack of self-esteem is killing me. I’m not writing, I’m not walking – I’m putting on a good show of being okay, but I don’t feel it.

I’m not depressed – I know that – but the fog is heavy.

I don’t know – maybe I’m depending too much on the fog to lift on its own, but instead I should be walking, in any direction, to see if I can find a way out of it. Maybe it’s a little bit of both – the fog and I both have to do something to get me out of it.

Well – that’s where I’m at at the moment. Hopefully next entry will be a more uplifting one.

I don't want a baby...

Surgery is over and I’m on day six of getting better. It all went well and while I’m a bit sore still and can’t do a lot of physical activity I do feel much better energy wise and therefore mentally and spiritually as well.

My surgeon found more endometriosis – quite significant scarring actually. And it may be that the pain I felt before I will still feel in the future. I’m reading a book called “Endometriosis and Pelvic Pain” by Dr Susan Evans at the moment to get some tips on lifestyle changes I can make to help me be as healthy as possible. I may go to the clinic where Dr Evans works as well as luckily for me it’s here in Adelaide, South Australia.

One thing that concerned/s me a little is that my surgeon said that if the pain doesn’t go away then the next step may be a hysterectomy, but from what I’ve learnt about endometriosis, a hysterectomy won’t do anything to fix the problem. I think I’ll get a second opinion before going down that road as it’s not a simple procedure.

Well, as the title of this post says, I don’t want a baby anymore. Really – I don’t.

I no longer think much about holding our newborn or nursing him or her or changing their nappies.

Instead that longing has been replaced by one for our seven year old child. I wish our seven year old Jacob or Ruby were here with us. I wish they were moving from being a small child to being one with more independence and riding around the wetlands on their bikes with their own friends, who is going to school and learning, and perhaps playing sports. Who knows what they would have been interested in? I wish they were here so we could know them.

In my heart my children are growing up as the years pass by. They were newborns, toddlers, pre-schoolers, and now they are seven years old.

A few weeks ago Kirby and I both had gastro – as we were sitting in the lounge feeling sorry for ourselves I asked Kirby if he thought Jacob or Ruby, given they did not have gastro also, would have looked after us as best a seven year old could do. We both thought that they would have – at least some of the time. 

Then Kirby and I held hands and reflected on what might have been.

Back to it...

I knew it had been a while since I’d written an entry here, but I didn’t realise that it has been quite so long!

The last month and a half have been busy with a family wedding and work and so on. I’ve also been unwell. The pain in my side has become worse and I will be going back in for surgery in mid-June to see if that can be resolved. More of my beautiful fish died – it seems there has been a spike in pH in the pond which is now fixed. I’ve been sleeping a lot and have kind of been a bit of a hermit regarding my writing and this blog.

I’ve had a few things to sort out in my mind before I felt ready to write again.

In regards to my last entry, one of my readers asked about endometriosis and what the symptoms are. There are many symptoms, and one of the best places I’ve found to read about them is on the Jean Hailes website, and the video Understanding endometriosis is really informative and I’ve shared that with my family to help them understand what endometriosis is all about (it's the third resource from the bottom of the page).

Last weekend there was an article written by (yet another) a woman who had gone through IVF and talks about how difficult infertility is, has ended up having a child, and is telling the rest of us not to give up because “you know, miracles DO happen. I have one sleeping upstairs right now.”

I still find articles such as this frustrating. Really – who is this woman to tell us that miracles happen? How often, really, do miracles happen?

Well – at least this woman is trying to be positive and encouraging. On the flip side of the coin, some of the comments on the article were just down right cruel toward people who are struggling to have children. It’s fine to have a difference of opinion, but why be nasty about it?

One woman suggests that our wanting children is the same as wanting any “commodity” and that we have some kind of sense of entitlement to children, and from her “Buddhist” perspective desiring to have our own children is an EGO-TRIP and will only end up with our suffering. Many people pointed out to her that compassion is one of the key principles of Buddhism, but she didn’t seem to get that point. I had an interesting debate with her, but eventually gave up – there’s no point trying to talk with someone who just wants to be right.

Oh – and she also claims to have infertility envy. Yeah – you read right.

To be honest – just thinking about what she, and some others, wrote brings up the angry wild beast in me. I won’t share with you the names I want to call her that are rolling around in my head – but I’m sure you can imagine what they might be. I’ll just say that she’s a great big meanie-head.

Why am I sharing this? Because there are going to be times when people are going to say cruel things to us – we who want children so much but can’t have them. It’s like we deserve the judgement and criticism for wanting children more than people who don’t particularly care about kids, have them anyway, and then treat them like dirt.

It’s getting easier with time to let these remarks and comments go without latching onto them, but given what I’ve recently been going through the comments by this woman really stung. I felt fragile and anxious and stuck.

Ironically, it was thinking about this woman’s version of Buddhism that got me back to feeling settled again.

For some reason I wanted her to be compassionate to me, but she wasn’t being compassionate. I made it my mission to get her to understand my perspective, but she wouldn’t. There came a point where I could either go crazy trying to change the way things were or I could let it all go. So, I let the anger go and watched it float on by – and I still am letting it go and float on by whenever the anger about what she said arises in my mind.

I like to think of Buddhism in terms of a river. Your self is sitting on the bank of a beautiful clear river and all different leaves float by from all different types of trees. You try to control them by creating a dam, but that just stops the flow of the river and all the leaves come together and form an indistinct sludge. You try to capture the leaves using a scoop, but that just stirs up the river and the clear water becomes so murky that you can no longer see the bottom. You try to push all the leaves away from you with your hand, but they just stick to you instead. Eventually you learn that all you need to do is watch the leaves float by.

All of the leaves represent different emotions – anger, sadness, happiness, love, guilt, joy, satisfaction. None of them are seen as “better” or more “worthy” than others and none are meant to be latched onto or pushed away. They are what they are – you see them, you feel them, you appreciate them for what they are, you may even act on them, and then you let them go.

This is what I try to do with my emotions – but it’s not always easy because I’m human!

The anger comes around, I see it, I feel it, I act on it if I am able and it would be healthy to do so, and then I let it go.

I’m going to leave it there, except to suggest that, if you are interested in a book that I have learnt a lot from, have a look at “The Antidote: Happiness for People Who Can’t Stand Positive Thinking” by Oliver Burkeman.

I just realised that I mentioned this book in April last year – so you can be assured it’s a favourite of mine!

The letter...

I went to see my doctor not long after my last blog entry. And my apologies for the time between entries! I’ve a couple of big projects to do and I haven’t been feeling too brilliant – although much better now.

Back to the doctor. She was amazing. I told her how I was feeling and that I wanted to go and see a counsellor. She agreed it would be a really good idea and we worked out who would be best for me to go and see. My doctor also offered to spend time, right there and then, talking about the endometriosis and how I was feeling about it all.

I won’t go into all of it, but she basically validated what I was feeling – which was very important as I now realise. To have someone who doesn’t have a personal link to me (as family and friends do) say that my thoughts and feelings are rational was so comforting – I’m not crazy! At least not on this issue…

My doctor suggested that I write a letter to the IVF clinic that we went to and let it all go. Write exactly what I feel and say exactly what I want to say – let it rip and use all the angry words I want to use without any holding back. And then, if I wanted to later, I could write it in a more appropriate way and actually send it to the IVF clinic manager.

I wrote the letter about a week after seeing my doctor. It was really therapeutic. I started off with my incredibly angry words, and then through the letter ended up claiming myself and my healing back.

I have decided to share the letter with you as it shows the thought process that I went through while writing it – from unbelievable anger at the clinic to claiming my own self again. I have blacked some of the letter out due to the words not being necessarily appropriate!

I will still be writing to the IVF clinic formally and seeing a counsellor, but writing this letter now has been an important and valuable first step in working through these messy emotions.

Stuck...

Frankie's response to my dancing...

I’ve been busy this past week, and I’ve actually enjoyed myself quite a lot – even though most of what I’ve been doing has been housework! It’s amazing what a good music soundtrack can do to make housework more tolerable! Although when I’m dancing around the kitchen with a broom my cat, Frankie, tends to hiss at me – I guess she’s not a fan of my moves…

Kirby and I went to the Adelaide Clipsal V8 Supercars on Saturday and that was awesome. We watched the race and wandered around looking at all the displays of old cars, and new cars (the type that we would never be able to afford!), and taking in the atmosphere. It was very hot! 38 degrees Celsius (around 37 degrees Celsius equals 100 degrees Fahrenheit). But it was great.

So things are going well, except I have a sense of feeling stuck in some areas of my life – particularly in regards to my writing. I want to write, I know what I want to write, but somehow, when I think about it, my anxiety rises. It’s almost like I don’t deserve it…or maybe I’m worried that I will fail at it…I’m not sure.

I’m having a lot of dreams about babies and the other day I said to Kirby that the baby I lost in 1998 (six years before I met Kirby) would have been eighteen this year. I actually said “Hayley would have been eighteen this year.” I’d never called that baby anything…so I don’t know why I’ve called her Hayley now. It was a very early miscarriage and it wasn’t confirmed at all, so there is a chance there was never any baby, but I do believe I was pregnant as my period was three weeks late and was very heavy when it came, and normally, at that time, my cycle was like clockwork.

I’ve still been crying and feeling upset about the whole endometriosis thing and finding myself thinking about that a lot. That’s happening less and less though.

I’m doing okay with the regular, every day things, but I feel as though there is a block which I am stuck behind that is stopping me from getting on with the other things – the things that make me who I really am.

So, I’m going to go see a counsellor.

I’ve gone from being so confused and sad that I know I need to see one, to feeling really good and thinking I don’t really need to see one. To be honest, I’d rather not go. I want to be able to work through all this on my own with the support of my family and friends. But, I can’t.

My family and f

riends are there without a doubt and they can talk to me, support me, and provide endless hugs, but I need to talk to someone who is independent, can assist me in viewing things differently, and can guide me toward regaining my motivation (or perhaps it’s more to do with overcoming anxiety or feeling I deserve to follow some of my dreams regardless of whether I succeed or not).

It’ll be interesting. I’ve seen one counsellor before, but I’m not certain if I should see her again, or whether it would be useful to see someone different for a different perspective. I’ve got three days to think about it!

It will be an interesting journey I’m sure. 

Guilt...

He’s going to say I have nothing to feel guilty about – but I have been feeling guilty lately.

I’ve been feeling guilty since the surgery and when I found out about the endometriosis.

So, it’s true that I may not have had endo back in 2009/2010 when we were doing IVF, and it’s true that even if I did and it was treated it may not have made any difference to me getting pregnant. It is, however, the closest thing to an explanation as to why we couldn’t get pregnant that we have ever had. All we ever got from the IVF clinic was “unexplained fertility”, which left us wondering if the issue was with me, with Kirby, or with both.

It’s not that either of us would have blamed each other – there is no blame.

Well – I know that I wouldn’t have blamed Kirby, and I know that he wouldn’t have blamed me. So, feeling like I do at the moment doesn’t really make sense – but then how often do feelings and thoughts really make sense?

I feel guilty that it seems I was the one who couldn’t bring a baby into our lives and who couldn’t make Kirby a father. He deserves to be a Dad. He should have had a son or daughter to raise and nurture and discipline and be annoyed at some times and love and have fun times with and create memories with. And I couldn’t give him that.

I keep thinking that I should have known endo was a possibility, and that I should have pushed for more tests and investigations. But, how could I know that endo was a possibility if I didn’t even know what endo was?

I asked Kirby the other night if he would still have married me if he knew that I couldn’t have children. I regretted asking the question as soon as I did. I know the answer – he would have. Asking him that question was unkind.

But I keep ruminating about the unfairness that my inept body cannot give him a child. I guess I’m just going to have to sit with that for a while until it passes by. And I hope it does soon.

It's how I feel...

It’s been just over a week since my day surgery. It went well – except that I ended up staying in hospital overnight as the surgeon had to do a bit more to me than originally anticipated.

It turns out I have endometriosis, so the surgeon cleared that up, my blood pressure dropped, I was in more pain than I certainly anticipated, and I was admitted. Fortunately I only stayed one night and was able to come home. I am so thankful for Ashford Hospital here in South Australia – the best medical care I could have hoped for.

For the first few days I was limited as to what I could do – in other words it was bed or the couch. And the worst was not being able to have my cats on my lap and not being able to pat my dogs or play with them. I’m feeling much better now and slowly being able to do more and more.

At least I’m feeling better physically.

Mentally?

Spiritually?

I’m struggling big time. It changes from day to day – Wednesday was a not so good day, yesterday was a good day, today is a bad day.

It’s not the fact that I’ve had an operation that has forever taken the choice of trying for a baby again away from me (which is something I have accepted). The reason I am struggling is that I have endometriosis and despite going through IVF and seeing a gynaecologist back around that time with symptoms associated with endometriosis (like infertility – duh!) nobody even bothered to investigate it as a possibility.

If they had – if they only had – it might have been addressed and we might have our child here with us right now. I am really struggling to come to terms with this.

I know that there is a possibility that I still wouldn’t have become pregnant, but the fact that further investigation was not done at the time is just beyond my comprehension. Why didn’t they check? I had the fatigue, I had the pain in my abdomen and lower back, I had the painful period cramp, I had had miscarriages, and I damn well couldn’t have a baby. What went wrong? You know I even recall them saying that I didn’t have it as they couldn’t see it on any scans – well guess what – the only way to truly know if someone has it is to do a laparoscopy (like I had last Thursday).

I am so furious. I have tried not to be angry and to “let it go” knowing nothing will change, but that isn’t working so much and I feel like I am being eaten up inside.  Instead I am going to let the anger and grief and whatever other emotions occur have their space, and deal with them instead of trying to bottle them up. I will cry, rage, talk, meditate, just “be” out in nature, play with my dogs, hug my nephew, throw tantrums, consider how blessed I am, tell Kirby I love him, and swear my head off.

But I’m not going to pretend I’m fine.

That would be a lie – because I’m not.

One thing that I know will help me now is to say this to you who are having trouble having a baby – if you even remotely suspect that you have endometriosis, stand up for yourself and demand that it be investigated. And don’t let them put you off by saying your scans don’t show any signs of it – insist on a laparoscopy.

And please, please, please – if you do go through the tests and find you do have endometriosis, and it is treated, and you end up with that miracle in your arms – please let me know. It would help to mend my heart to know that something good might come from sharing my experience with you. And photos too please! Lots of photos!

My love, as always, to all my readers, and thank you for your endless support.