This post, I hope will be overwhelmingly positive after what was a great day on Saturday. I attended Endometriosis UK‘s information day and it was excellent! I found it fulfilling on many different levels. I wanted to try and gather everything I had found useful from the day in one place, after tweeting lots and taking nearly 20 pages of notes! You can see I was a massive keen bean from the start:
What has this got to do with work?
Well Endo impacts my day to day life and a large part of that is obviously getting up and going to work for the day battling with pain and fatigue. If you want to read more about that etc take a look at one of my last posts (although bear in mind I was angry after having surgery rescheduled so it sounds a bit ranty)
This also links with work because I have never done volunteering for a charity on this level before (helping with my local support group ) and this will inevitably help me build valuable skills for working with people generally. I have just submitted information to become a member of Endo UK and look forward to working with them more closely.
The info day itself
So not only did this give me an opportunity to speak with people with the same condition as me and get to know them and their stories but this was actually the first time I had traveled to London and used the underground alone. So massive tick in a box that would usually have caused me a lot of anxiety!
The day started with an opening talk from EndoUK and went on to talks from doctors, nurses and other professionals ‘in the know’ about endo (hey could that be a new slogan?) in the afternoon we were in sessions where we were split into groups to discuss different topics, one went over coping strategies and the other went over how endo impacts on people’s relationships. Both were really useful but the second session made me feel a little bit emotional.
It was great being in a room full of wisdom with everyone sharing their coping strategies for dealing with endo day to day. Some of these I had heard of, others I hadn’t. You can see the tweet below for some of the items we listed (the page was already jam packed and it just got fuller and fuller after this!) I have embedded tweets instead of the pics because some how that made them better quality/easier to read.
How Endo impacts people’s relationships
This session was particularly emotional. People were really open and honest about the things they experience with regards to relationships being impacted by endo, be that friends, families, partners or work.
Work was an area that was mentioned a lot. I am lucky to have supportive colleagues and my boss is very understanding but I heard about some people who have had nasty or dismissive managers. I also heard about the number of women with endo who had to change work arrangements or go self employed in order to be able to work around their needs.
It was so nice to see that people found my tweets useful and were sharing them. I think some people will get sick of my twitter feed from now on and possibly my facebook feed as well because I will be posting more about this because it needs to be in main stream consciousness! As we were discussing in our groups, government and/or health care professionals don’t always acknowledge endo as a big problem because it will seriously open up a can of worms if they want to properly address this problem and help people. One of the things we can do to help at least is educate people about it.
But is is a balancing act
While writing this post I have been having a particularly rubbish time in terms of pain and fatigue and feeling isolated despite all the awesome and inspiring people I met at the weekend (“if they can be strong, why can’t I?”) I have now joined Health Unlocked which is a forum for people to post in for support, I would advise other people make use of online forums such as those and the ones provided by EndoUK – that’s how I first got in touch with other people after I was diagnosed. I was lucky that I knew a bit about endo from one of my close friends but I have met people recently who have been diagnosed and have been left in the dark by their doctors.
It’s sad for me to think that despite the fact there are lots of people out there who can relate and are going through the same, if not worse than me I can still feel really isolated.One positive I can take is that the advice a nurse I spoke to on the day gave was put into action yesterday and I have managed to get a follow up appointment which is another step in the right direction to getting some treatment/help.
If anyone has found this post useful please share it on social media so it can benefit other women who have endo or similar conditions. Also do visit EndoUK’s website there is wealth of information of there and I keep discovering more every time I go on there. If you want to donate to them as well that would be amazing the money helps provide vital support for women with this disease.