The Melancholy Princess trapped in an Infertility Tower

Today my deep profound sadness is back. 

The sadness is always here at the moment but not always so deep and profound. There is normally a trigger. When I was researching all that there is to know about a hysterectomy prior to my surgery I saw all of the articles and mentions of depression. I didn’t read them. I didn’t think I needed to. I didn’t think it would happen to me. 

Yet here I am.... a Melancholy Princess trapped in my Infertility Tower. Ok that was a little dramatic but it sounds a lot better than a barren 33 year old woman trapped in her bedroom doesn’t it? I must strive to see the fun side and the flip side to all of this. 

Yesterday I had an osteopath appointment to treat my neck pain. Typing for long stretches last week during my take home exam really hurt my body. Also sleeping for such long periods afterwards wouldn’t have done me any good either. My neck and back were in spasms and were really bothering me. 

Not bothering as in annoying. Bothering as in preventing me from being able to turn my head and having a constant headache that was unresponsive to any type of pain killer or muscle relaxant. That kind of bother. My osteopath is such a good doctor and treats you so well you don’t need to see him all the time unlike scam stories I have heard about osteopaths. I haven’t seen him for over 8 months which meant he wasn’t aware of my hysterectomy. 

As I lay under the duvet (because I hadn't got out of bed yet) and made the appointment just the thought that I would have to tell another person in my life that I have had a hysterectomy brought tears to my eyes and the sadness set in. I can’t even say the H word without choking up and crying. I get a pain in my heart, I close my eyes and I hurt.  It seems that these tiny little moments are what trigger the deep profound sadness and once set in lasts for days. 

I hate endo.  I hate telling people that I have it.  I hate having to explain it because they don't know.  I hate thinking about the surgery. I hate telling people that I’ve had it. I hate waiting for their reaction. I hate telling my friends that it didn't 'fix me'.  I hate the raise of their eyebrows when I tell them I am still in pain.  I hate what they tell me (good or bad).  I hate that I feel violated. I hate that I am angry. I hate that I am sad.  I hate that I no longer have control over my life (or destiny) which is ultimately the thing that I am finding most hard to deal with. 

Now that’s a lot of hate! 

Dr Dreamy recommended a month or so ago that maybe I should see a counsellor and talk to someone.  At first I was quite taken back.  He was always firm with me that I wasn’t depressed clinically but rather depressed because I was in such excruciating pain and because I was suffering and recovering from the trauma of a long term illness and the recent surgery.  The weeks then months after my surgery he saw a different person.  

A fragile, vulnerable, angry, sad woman desperately struggling to keep her head above water.  So I did what he wanted me to because I trust him.  I went to 'see someone'. 

I did some research on the types counselling and also looked at my psychology textbooks from the first year (and only year) I did of psychology and also the numerous textbooks of my Dad’s.  I was only interested in talking about endo how it has impacted on my life and the recent surgery and now the surgery to come.  I don’t have anything else that makes me depressed and if there is it is collateral damage from the endo. 

I came across Gestalt Therapy and knew this was the one for me.  It is for right here right now and has a holistic approach.  It really appealed to me.  I believe supporting local businesses and found someone local that was a Gestalt Therapist.  I called her up explained my situation and background and she made time for me. My first appointment was rough. She was astute, intuitive and ‘got me’ straight away.  I also liked her straight away.  She was a bit of a hippy and she had fantastic art around the place and was burning fantastic oil.  I later found out at the end of my session that she was an artist and had done all of that brilliant art herself. 

She was the one that pointed out that I couldn’t say the H word without choking; the one that told me I had gone into shock; the one who told me I needed a creative outlet (like this blog) to express all of my emotions; and the one who realised the control and vulnerability issues I have.  

She validated my feelings and that is what I need right now because I am not getting it from anyone besides my fellow endosisters and infertiles.  I felt relieved after my first appointment. I don’t cry in front of people and I nearly cried with her.  Nearly.  I think she will be able to help me as much is possible. 

I am not a professional writer (just in case you didn’t notice!) and the purpose of my blog is for me to be creative in the way that I talk about my endo and what it has done to my life in the hope to communicate all of the emotions that I am feeling throughout my recovery because I am not coping. 

I am not coping with the fact that I have endo and have had it for such a long time and I am not coping with the surgery and my new infertile status.  I will write from time to time all the ridiculous things people say to me and how bad I feel.  I will also write about my sadness and feelings of melancholy. 

These feelings were sudden and unexpected which is why I am finding it hard to cope. In a sense I am in shock and am reeling from it.  Can I somehow be suffering from a post traumatic disorder of some kind?  Perhaps that is something I should raise with my hippy counsellor?

Back to the osteopath appointment.  So there I was naked under a hospital gown and telling my osteopath (who also studied medicine in the USA) about how dangerously sick I had become and how I had to have a hysterectomy.  I wasn’t searching for sympathy.  I never am.  I was simply advising him because he is a medical doctor and he also treats my body.  I think he ought to know that something significant has happened to my body so in the very least he can make a note on my file.  Wouldn’t you think that is being responsible?

Most of the time when I tell people about the recent surgery it is clear that I am still not coping or have come to terms with my loss.  I try to fake it but can’t.  This is new this inability to control my emotions for I am always so controlled.  It is clear because I choke up and can’t speak the words properly and tears well up in my eyes. When I say the H word I quiver and swallow.  I also can’t say other words around the H word and I absently put my hand over my neck.  

Human behaviour is so very interesting isn’t it?  Sometimes it gets worse when people are so full of compassion that they too are upset.  I continue to be surprised at how compassionate some people are that they notice these things and how kind they are to someone who is truly suffering.  Some people, some strangers have reached out to me in such a way that I will never forget.  I have found support in the most unlikely of places.  And none in the places where I expected to.  Unfortunately I am also continually surprised at how thoughtless and ignorant some people can be as well. 

After telling my osteopath his advice in a rather matter of fact way was to go and visit a friend of mine who had children, spend the night there and then I would feel better about not being able to have children.  He didn’t ask me how I was recovering or how I felt about the surgery.  I couldn’t believe it.  A patient of his has major surgery and that is what he says? I honestly could not believe that he had dismissed my horrific illness and subsequent surgery with such a flippant stupid remark. 

 Then he proceeded to ask me what surgery I had originally to give me endo.  Baffled I said none and that I had visually proven endo since I was a teenager (which I have told him many times before!).  He then said to me that endo is obtained normally from surgery.  WHOA!  My blood started pumping through my veins and I felt like I could get violent.  I can't stand seeing people in positions of authority who have NO IDEA.  Clearly his medical degree is bogus and his bedside manner leaves a lot to be desired.  I couldn’t believe that he knew so little about endo and further that he would treat a woman in such a way. 

When a young woman tells you that she’s had a hysterectomy due to severe illness and she hasn’t had any children and isn’t married – you do not dismiss her or belittle her.  At least not this woman!  Maybe I am just extremely sensitive at the moment.  Maybe he was trying to make me feel better.  Maybe. 

That still doesn’t address his ignorance to a significant disease that affects so many women.  Am I too sensitive?  Do I need to back down?  Are my expectations of people a little too high? I don’t think that they are but perhaps I need to be pulled down a peg or two?

I was able to study for the rest of the day with my neck all massaged and cracked back into place.  I am truly in a state of panic about my exam next Friday.  I have hardly done any work on this subject and this week I lost two whole days to endo and migraines and one to extreme fatigue and depression.  I can’t rely on myself to be able to study every day.  

I am going to have to really try hard to focus and motivate myself to go through the work that I need to learn.  I actually should be revising not learning. I can’t bear the thought of not doing this exam again.  I can’t bear the thought of failing a subject.  I am yet to do that and I am very close.  It is 75% of my mark so I need to pass. 

 If I have some good notes and if I am able to identify some issues and analyse the cases I should be able to just pass. I  will by next Friday have some good notes.  Fingers crossed.  I pray for at least 4 days of good study.  I find studying at night the most productive for everyone in the house (Mum, Grandad, Niece 13 and Niece 4.5) are sleeping and the house is quiet which means no disruptions! 

This morning I had planned to get up early to get some early morning study done and take Niece 13 to an orthodontist appointment.  I was awake at 5 am due to excruciating pelvic pain.  A severe endo flare started last night and it made a good sleep impossible.  The red raw burning evil pain that cripples me and doesn’t respond well to pain killers.  I heated my heat pack and swallowed my morning dose of OxyContin then took a large dose of OxyNorm hoping that the immediate release drug would ease some suffering.  I lay in bed and prayed for some relief. I prayed that I would be able to get up, drive my niece to her appointment then school, and finally be able to go for a swim. 

I got to my gym before 8am after running Niece 13 around.  It is still a little too cold for me to go into the surf so I have been going to the pool at my gym.  I can’t wait until it is warmer.  Last year I was at the beach and in the surf every single morning!  The pool was empty (as it always is) and I swam, kick boarded and ran in the water.  It was killing me.  The pain was incredible.  My arms were heavy most likely from all of the painkillers I had to take just to get out of bed.  But the water felt amazing.  

At one stage I just stopped and floated around in the water.  Just floating and listening to my heartbeat.  It is moments like these that remind me that I am really Australian (even though on first generation!) for the love of water sports and just being in the water.  I forced myself to swim some more.  I then went upstairs and did a great set of squats on the bosu, ab exercises on the swiss ball, pushups and work on my upper body finishing off with some Feldenkrais. 

I am determined to the point of obsession to have my body stronger and healthier for the next surgery.  I did exactly the same for my last surgery and I recovered well physically despite the immense pelvic pain.  I spent a further 40 minutes in the sauna and steam room as a reward for getting up and moving despite my agony.  I have never used sauna and steam rooms until recently and I am finding them relaxing and invigorating. 

I know people find it hard to understand that I can claim to be in agony yet somehow manage to swim and go to the gym to do a workout.  I know people that are perfectly healthy that can’t do this.  But the thing the separates me from those people is not the endo.  It is my mental determination. I literally force myself. 

I think this stems from studying classical ballet from a young age.  The principle of dancing through your pain and incorporating a strict regime despite anything was instilled early and has stayed with me.  I once danced with torn ligaments in my right ankle, with broken bleeding toes - yet still kept going.  

This mental determination also helped me trek through the Himalayas to near Everest Base Camp even though I had been bleeding for over 30 days and had severe cramps.  Being able to do these things despite the endo and despite the pain further serve to add to the endo mystery.  So I guess sometimes the sufferers are responsible themselves for the mystery of our illness. 

I don’t want to give the impression that I am somehow boasting or that I full of myself because of these sporadic successful achievements for I know chronic pain sufferers and endo sufferers that are unable despite their own mental determination to even attempt to swim a lap of the pool or lift a weight.  What I want to do is to highlight that we are all individuals with individual levels of pain and determination and more importantly, recovery. 

I thank G-d everyday for the blessings that I do have.  I thank Him for the days that I am able to be active for there are days when I simply can’t get out of bed let alone drive to the gym or the beach and swim.  On those days I am under the duvet, in the foetal position, clutching a heatpack, scoffing pain killers, sobbing and crying, praying for relief.  If there is a slight chance that I will be able to and if the pain killers work enough in my favour then I will try.  And I work through the pain because I know my body will be better because of it. I glide through the waves of pain. I push through the stabbing pain. I find it ironic that the more my body debilitates me the better I am to it. 

I made a beautiful fruit salad this afternoon with fresh mangoes and every other delightful fruit available.  I must go and stuff myself full of it.