Wednesday, 18 November 2009

Whatever happened to just being happy?

For those of you who have followed my blog due to endometriosis connections, I am sure you will understand the following blog post, for those of you who have not been affected by endo, I hope you won't see this post as a simple "moan" or "attack", it is simply a truthful expression of how I feel, right now.

These past few weeks have been tough on both me and Tim, and I cannot ever remember crying so much for so long. This past year has really taken it out of me and I feel ready to break, in fact I think I already have broken a little bit, based on the amount of tears that have spilled recently. And these aren't just my own, for poor Tim has had to try and console me, knowing that there was nothing he could really do to make things better. I am battling a "invisible condition" that even I forget is there making me feel so rubbish sometimes... sometimes I forget and think it is all my fault, that if only I could just pull myself together things wouldn't be so bad.

It all started about a month ago when suddenly my urge to have children turned up a gear. A friend at work told me she had dreamt I was pregnant, and then I dreamt we had a baby, two nights running... except the baby wasn't quite ours and we weren't prepared to look after it (as in we didn't have any equipment, feed etc, not that we didn't want to!) This sparked a whole rush a emotions, such as "I want children, now" and "what if we leave it too late to try and find the endo causes more damage and we can't have children?" and "I'm already feeling so ill now, how will my body cope with being pregnant?" and "what if this is all pointless worrying, what if we already can't have children?"... and so on and so forth. I began to get really depressed about how my lifelong dream of having children was becoming a nightmare - why should something so wonderful become a decision that has to be made based more on the best time healthwise and whether we have enough finances, rather than that we actually want children? Why does endo (and all those other factors that affect people's lives) have to screw things up?

As the weeks went on I got more and more exhausted. My immune system is low due to exhaustion and fatigue (I cannot count the times I have fallen asleep on the bus to work because I am so tired). I am working full-time, commuting which puts my days up to 12 hours out of the house and I am angry that I am doing something any healthy person would find hard, whilst trying to battle feeling ill all at the same time. When did society get so messed up that my generation is worse off than the one before? Why is no choice hidden behind a so-called "free-choice"... no woman really has a choice whether to work or not, it's not that easy. Most women have to work just to survive, and those who can come out of work have to make many sacrifices just to do so... whatever happened to family values (and by that I mean simply being able to put the family first, not having to).

All this was happening whilst a cold caught hold of me... a cold that just will not go away, dragging at my very little energy until I have none left and feel like I just cannot go on any longer. I fear for what damage I could do by pushing myself so far beyond my limits, yet I have no choice when I have to work just to pay the rent. We have no choice, Tim and I, we have to fight on. But what happens when you just cannot fight any longer?

We are left with dying hopes that our appointment with the gynaecologist tomorrow may come up with some solutions for us. I cannot take feeling this low any longer, and I cannot take knowing the adverse effects my mood has on Tim. We are a young couple and life should be fun, not a struggle every day. My manager asked me in my performance review where I saw myself heading and what aspirations I had for the future... I've been told a few times I'm not ambitious enough, but you know what, my greatest ambitions are to be healthy and to have a family, what is wrong with that? Why do we have such a focus on careers and achievements and "having it all"... whatever happened to just being happy?

I know this feeling is, in the big scheme of things, only momentary and that things will get better, but it becomes harder and harder to hold on to that hope when each day just drags us down that little bit further. I grasp desperately at solutions, but none of them work and the guilt that I feel for putting so much pressure on Tim and myself to make our lives easier is unfair to us both. Sometimes I wish we just had a fairy godmother who could come and wave her wand and make everything better... please think of us tomorrow as we head to the hospital for our appointment, for the gynaecologist is our one hope of finding a solution the root of this whole mess - the endo!

3 comments:

Bithya said...

I am so sorry to hear what you have been going trough Amanda... I can relate (a lot actually..its not children with me ...but other dreams I am not sure I can fullfill ...also had the cold-thingy...lasted for 3 weeks before now finally its kind of gone). Dont know what to say...thinking of you... a lot... and hope the appointment tomorrow will bring good news!

Big Hugs

Jeanne said...

Amanda,

Don't ever worry about whether you sound like you're complaining or not. Even if I didn't have endometriosis, it would not faze me if you did what you did here... simply wrote honestly about your life. In fact, most blogs I follow (endometriosis blogs or not) do just that... tell the truth. Never be afraid to tell the truth. It is your blog. You control the content. :) I'm really sorry you've been having such a hard time. I have lived with endometriosis for 27 years now and I "get it". The questions you raised about fertility are ones that haunt many of the 89 million women on this planet who have endo. You are not alone. I know it may be small comfort that you have so much company. I know that you, like me, wish there were NOT 89 million women with endo in this world.

I will say, though, that I have found enormous comfort from fellow endometriosis patients. I cannot emphasize how much it has helped me to network with fellow patients. To me it has been imperative.

The crying could be related to pain, hormonal issues, anxiety surrounding the fertility questions you posed, concerns about work, stress... or all of the above. Who wouldn't cry with all of that to worry about? At the same time, it's important with chronic illness not to get to a point where despair takes over. That's where the coping skills become so crucial. "The coping skills?" What coping skills, right? Well, that differs from person to person. Some techniques are obvious and others more subtle.

For example, for some people taking in and appreciating nature can be very helpful. (I know you have talked about this). Others may not be as "at home" outdoors. Many people find music to be very healing. Deep breathing exercises, progressive muscle relation exercises, and meditation can all be helpful. These are just a few of many examples of coping mechanisms or methods to promote relaxation. They are all free.

As far as coping with specific symptoms, there is a whole world of alternative medicine options available. Sadly, most doctors pooh pooh these. One that you and I have talked about a little is acupuncture (which helps me greatly)! There are many others. What type of coverage you'd have or what cost is involved where you are, I don't know. All I know is that Traditional Western Medicine (TWM) alone was nowhere near sufficient to address my needs. I am grateful to the fellow patients who had introduced me to everything from homeopathy to physical therapy for pelvic pain to meditation.

For me, complementary medicine has helped me so much more than TWM alone. I've had 7 surgeries and played guinea pig with various medications that were supposed to help me with endometriosis. I look back and wish I had tried new things earlier. I wish I had broadened my perspective much sooner. Hindsight is 20/20, of course. I just wish I knew then what I know now.

It's unfortunate that your friend/co-worker's comment about the dream seems to have triggered all of this emotional pain for you. Obviously if it hadn't been her comment... it would likely have been something else to trigger this fertility anxiety.

After all, how can you not get concerned when you witness endometriosis patients around you having such difficulty getting or staying pregnant? I spent many, many, many years torturing myself with fertility worries. By the time I had met my husband, I'd already had 4 surgeries for endo. Let's face it... the reality is I felt like damaged goods and I was scared sick that I would not be able to get pregnant.

To be continued (won't fit on Blogger)...

Jeanne

Jeanne said...

Amanda,

Here is part 2 (cont'd from above due to Blogger character limit):

On our first date, I told my now-husband about my endo. I could see this was no ordinary first date and that I was about to dive into a very serious relationship. I wasn't about to hurt him or me by shying away from disclosing the fact that I have endo. If this was a deal-breaker for him, I needed to know up front. Fortunately, it wasn't a deal-breaker. I am very fortunate in that, after all my years of worrying, I was able to get pregnant and carry to term. I know I am very blessed.

Obviously, I can't tell you what will happen with your fertility. No one can tell you that. There are doctors who like to pretend they can be some sort of odds-makers with these things but the reality is one can't predict it. No one wants to feel forced to make decisions about when to try to conceive based on how they think their potentially-infertility-inducing illness is doing. :( It's a very difficult situation to be in.

I hope your cold is gone or near-gone by now.

As far as "what happens when you can't fight any longer?" is concerned, I just wrote lots of comments on this very issue to J on this blog post: http://autoimmunelife.wordpress.com/2009/11/19/how-much-longer-can-i-survive/

Her post (above) is titled "How Much Longer Can I Survive?" Sound familiar? We all wonder things along the lines of "how will I go on?" at certain points. (I don't limit that to endo patients. Everyone has their struggles). Some people seem to have more than their fair share of struggles. Life, as we know, is not fair.

The fact is that you are a very strong person! You will get through this and you will move forward. It may not always be easy or fun. OK... let's face facts and say it WON'T always be easy or fun.

That said, if you feel that the change in your moods warrants treatment, please get it! There is a very high rate of depression amongst the chronic illness population. There are very effective treatment options available. Don't be afraid to get any medical help you might need.

THANK YOU for posting Alicia's badge to her adoption site! I posted a link on her Facebook wall to your blog. I am posting all "badge-posters" that come to my attention. With her rabid following, the badge could get posted widely if everyone pitches in.

I know it's hard. Hang in there!! :)

Peace,

Jeanne

P.S. You know where to find me if you need an ear. :)

Post a Comment