Realisation

Even though I was diagnosed with Endometriosis in 2005 and had most likely had it for several years before that I never really accepted that I was living with a chronic condition - and all the ways in which that can screw you up!

Every so often, say every couple of years on average (but sometimes far more frequently) I go through such a dark period. I get depressed and find myself unable to cope with anything. At uni I approached the doctor about this and was brushed aside as "suffering from stress". And I believed her. Throughout my adult life in fact I have had people respond with similar things "It is just because of your job, changes in your life etc". Don't get me wrong, I know that the circumstances in my life make it harder to cope - but I'm sure I shouldn't feel this bad.

It has only been recently that I realised that despite having a boyfriend who totally adores me and a job that I not only love but cannot imagine not having I was still utterly depressed. I truly mean it when I say I love my job - I am finding it so difficult at the moment to cope as I am exhausted beyond belief due to the symptoms of my endo and after a couple of weeks at work I am flagging desperately, and yet the thought of cutting my hours to cope or making changes to my responsibilities fills me with such great sadness. So it's not as if I am unhappy in my work as I have been in the past, or lonely because I have a great boyfriend who cares deeply for me... we're even now getting ready to move into a gorgeous house and have more money than we have had for the past 10 months! I should be so happy - and yet I feel empty and the only feeling I seem to be experiencing is sadness, so deep it hurts and makes me want to do nothing, even though doing nothing makes me sadder.

And this is why I am now realising that I am not a naturally unhappy person - in fact T has always said how optimistic I am (last year through all the problems I still managed to look forward with hope - it was only when I started on the injections to start the pseudo-menopause when I lost that hope). I can be worn down by circumstance but usually rise above it and now when I look back at all the times I have felt so lost, alone, scared and empty it has been when I have been having problems coping with the effects of my endo. Which sucks. Big time.

I go to the gynaecologist next Thursday, who is expecting me to be 4 months along with the menopausal injections when in actual fact I had them for one month, stopped in November and am still suffering from insomnia, mood swings, more pain than I was in before and complete exhaustion - not to mention the odd bit of paranoia. I missed Christmas and New Year due to feeling crap both physically and emotionally and now, at the end of January, have struggled to get through the last couple of weeks. And yet, I still find it hard to be vulnerable and let people help...

I guess because I never realised it was an effect of the endo I felt weak and couldn't let myself be open to the possible hurt of being told yet again (even by friends) just to "get on with it"and "cheer up". It hurts to open yourself up to people and tell them you are sad or hurting to have them brush it aside or just get fed up of it going on for so long - because sometimes it does go on a long time. Far easier not to bother - and that is the pattern I created and now need to break. Let me explain - I worry constantly about how my moods will affect T - will he get fed up of me, will it be too much for him etc. No matter how much he tells me he will never get fed up he does admit he cannot understand what I'm going through and that is hard for both of us. What is worse is the fact that in recent weeks I have felt distanced from him because of what is happening and that scares me and makes me so sad.

I don't want to burden him with having to deal with it alone and whereas I began the treatment last year with the intention not to tell many people I have ended up telling most of my colleagues because it has affected me so badly I couldn't hide it. And yet I find it so difficult to say "I need a break" or "I can't do this today" and want so badly to be normal that I continue to do all I usually do on a normal day. Like yesterday - my supervisor asked me how I was and when I said I hadn't slept and was exhausted he sat down to talk to me but I became my usual defensive self when showing how vulnerable I am and brushed it aside with a "what can you do?" shrug and he left it at that. Then I felt rubbish for wasting the opportunity to tell him I didn't feel I could cope with this and that at times because the more I think about it the more I tell him the more he and my manager can help me come up with strategies to help me cope at work. He made me go home early, as did another colleague, anyway and even though I as grateful to leave I felt like a failure for not being able to make it through a whole month without taking a day off and cried all the way home. T then rang my supervisor to tell him I wouldn't be in today and I am planning on trying to set up a meeting with him and my manager after my next hospital appointment to discuss work and some strategies to help me cope on bad days.

I felt a bit better after reading a factsheet by endometriosis uk which gave me the following statistics:

• 82% of women surveyed have lost days of work due to endometriosis in the last 5 years
• On average, endometriosis patients lost 6 days of work each month
• About a third had to reduce their working hours, retire or have lost their jobs as a result of the disease
• 43% of women affected are afraid to tell their employers in case it affects their job prospects

That last one I agree with - even tough I have told my employers about it I have tried to carry on regardless and have turned up to work even when I shouldn't have because of fear that it would affect my job. My direct supervisor and manager are great about it but with the council planning on job cuts due to losses in investments now feels like the wrong time to show weakness! Also, if I begin doing less of a job, will that make them think they made the wrong decision to hire me? It's quite alarming to see that so many women lose work or time at work due to endo and yet it is so often a taboo subject. I told my supervisor how hormonal I was once and all the women at work told me (and always tell me) "Oh he won't have wanted to know that" - I personally think my supervisor is cool because he actually cares for all of his assistants which is so clear to see in the way he deals with us all and he has never brushed me aside when I have, on occasions, spoken to him about it (not in great detail but just to say - "yeah I'm emotional today, can I do something in the back office rather than facing awkward customers!")

The statistics leaflet also stated:

"Seventy three percent of the women surveyed felt that endometriosis had adversely affected their relationships with their partners, their friends and their children."

This makes me feel a little better over the way I have been with T - honestly I love him dearly but not in the same way I did before - it's like I cannot cope with all the emotions of it all and I HATE that because I cannot imagine my life without him yet at the moment I need him to be more than he can be and that puts such pressure on him. I cannot tell you how much this grieves me but knowing that almost 3/4 of the women surveyed felt the same pressures makes me feel a bit better knowing it is not just me alone causing this.

Ok so if you have made it this far, thanks for bearing with me - I know it can be tough to understand all this if you've never experienced it - after all when my mum (who has M.E) used to tell me she was tired and couldn't do things because she hadn't slept I used to be quite dismissive (oh to my shame) but now that I have experienced the effects of insomnia and what being tired really means I can relate much better. I just needed to get it out today.