So, I did the right thing and went for a walk…. baaad idea đŚ I wish something in life could be easy.
Tag: endo
Who am I?
I feel like I’ve lost the essence of who I am.
Friday night I met a gorgeous, funny and exuberant lady. Her energy was contagious. She reminded of my pre-endo me.
I don’t know if it’s the pain or the medications (probably both) but I feel like I’m not the Alex I used to be.Â
I used to run around the school grounds in order to accomplish my weekly tasks – I was a member of many, many groups. I used to be a social butterfly. I used to love going out. I used to love trying new things. I used to love theme parks and walking and meeting new people. I juggled multiple jobs whilst studying full time.
Now, I sit in a chair and hope someone will come and talk to me. I feel like I’ve got nothing exciting to talk about – I usually end up bring the mood down. The thought of walking around a theme park makes my uterus cringe. I desire to go new places and try new things, but the energy it takes makes it almost not worth it. I have left my job and about to study part time.
I don’t laugh as much. My “jokes” don’t make people laugh any more, but make them seriously worried about my mental health, “is she serious?” Well, at least my dark humour is funny to me, right?
I have so many dreams that are left untouched and as I get older and as each treatment fails, they become further out of sight. When I try new things, I am now more likely to fail than succeed.
This seems depressive – but I feel like a different person now and I actually miss the old Alex and I’m sure those who know and love me do too.
Bleh
what a joyous moment when you realise that nausea has become a daily symptom. Thank you endo, thank you.
Even at this stage [when severe pain has overtaken ones life], most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.
Centrelink Battles
So, I’m not “sick enough” to get any disability support and my husband earns too much for me to participate in their “prove to us that you are too disabled to work” program. And when I say he “earns too much”, what their maximum weekly income before tax is, is the same as what he earns after tax. For example (hypothetically), if the maximum income for my partner can be $300 before tax, my husband earns about $300 after tax.
This has been frustrating to say the least.
Then, reading the Endometriosis Australia research page today, I found this:
⢠The average cost per woman per year from endometriosis was calculated in a study across 10 countries. We have no study to work out the average cost in Australia. The key points from that study were as follows;
o Severity of the stage of endometriosis did not reflect the severity of the symptoms
o Quality of life was impacted by symptoms, the main culprit being pain. It impacted on productivity levels at work as well as non-work related activities including, housework, exercise relationships, child caring, shopping and study.
o Average cost of endometriosis per woman per year
⢠Total â $12,094.25AUS)
⢠Lost work productivity â $7950.28 AUS
⢠Direct health care costs â $3929.70 AUS
o The cost of endometriosis reaches further than the personal costs for a woman with endometriosis. It has a wider impact on the community. Lost productivity is twice the cost than the direct health care costs to a woman with endometriosis.
Something to think about….
Back to the start
After more research and speaking to other woman with the same or similar issue to me…… I must return to the specialist that told me there is nothing wrong with me… His suggestion was to lose weight and see a psychologist. Apparently the chronic pain has “just been in my head” and my real problem is obesity. NOTE: I WAS NOT OBESE BEFORE THE PAIN STARTED!
Sorry, sore spot.Â
I need to vent. I have a month and a half to reconcile myself with the impending consult, praying he wakes up on the right side of the bed and has some compassion for breakfast. I don’t feel like paying another $180 for 15 minutes of aggravated physical pain and emotional trauma (okay, I may be over-reacting…)
Stop the Guilt
So, I woke up at 12:15pm. I don’t start work until 4pm. I am in pain.
Even though I could have gone back to sleep, my guilt got me out of bed. Now I’m up and in more pain. Too much pain to do any real work and to write any more in this blog. But will someone please take the guilt (of doing nothing) away?
Gluten Free
I’ve been gluten free for 3 weeks now, no change in the pain unfortunately.
This change in my diet is horrible, I miss soft, delicious fresh bread and the pink cupcake from my favourite cafe. Now, inevitable, which I have been avoiding has some – losing the dairy! Chocolate, ice-cream, hot chocolate and Irish Breakfast tea with a dash of skim milk – gone. I am amazed at myself for getting through my first day. An “everything free” packet chocolate cake will be one of my closest and most expensive friend, me thinks.
Eventually I will lose soy. sigh. Normal medicine hasn’t worked, so giving natropathy a try. Endometriosis and PCOS really has infiltrated its way into every part of my life – not even the food I eat is free from it.
Has anyone else with endo/PCOS found it helpful? Not just changing to an eliminated diet, but also herb/vitamin supplements?
And to leave on a positive note: I have found love and relaxation in The Mentalist and Boston Legal đ
Endometriosis (re)Defined
Pretty sure the REAL meaning of endometriosis is:
“live in chronic pain until you hit menopause or get yourself a hysterectomy.”
OR
“get your hopes up and have them crushed.”
Vote?
Laparoscopy
So, I had a laparoscopy nearly 2 weeks ago, with the hope of emerging pain free (after recovery of course). The last one I had gave me 6 months relief, which is what I was expecting this time….Â
Now, I understand it has only been two weeks, but 6 days ago I was feeling great and thought I was cured from this wretched chronic pain. Unfortunately, after Friday, the pain has escalated, and it’s agony. Only by the grace if God have I been able to type this after completing hours of work.
So, what now? Wait with hope that next week will be better? Begin planning to make extra adjustments in my life that I was avoiding, in case the surgery worked?
On top of this I need to now manage another diagnosis, which came to light a few weeks ago… but more on that next time.
The moral of this blog: endometriosis is unpredictable, unrelenting and uncontrollable. On the plus side, I continue to rely on Jesus to get through life every day, literally.
Breaking Stigma 