Happy 1st of May to you all – wherever you are in the world.
I say happy as I’m sending it to you even if you feel shit … vibes to everyone whether you’re having a wonderful day or not so much. I’ve had a bit of both today and naturally that’s prime writing time for me, quite cathartic and hopefully a little useful. Even if only to one other soul out there – my blog isn’t that popular after all LOL.
I’ve been having what I call a “wobbly day” today and it left me thinking about how much I relish the community I’ve found in my phone (it’s ok they don’t live in my phone).
I felt like it was important for us to have a discussion about this.
Firstly lets face it, whether it’s a chronic illness, temporary ailment or worse we often look for a place where we can find information from others who are/have experienced it.
GREAT FIRST STEP – providing you’re lucky enough to find a balanced group of people being genuine about how they are affected (emotionally and physically) whilst also remaining productive, supportive and at times positive. The reason I highlight this is after joining my first endometriosis group years ago I wanted to fly to space and not come back. Not for a surreal new experience or because I am an Alien, but just to get the hell away from everyone. It was very heavy and whilst there was a lot of reality and truth to what people were saying/sharing, it felt like negativity and depression was being bounced off more of the same. Hey I want hard facts as much as the next person – just not over and over again multiplied with fear, self loathing and a horror story or too. This isn’t conducive to finding a way to live with these things.
I want a place to rant I can’t deny that, a place I can come for some accessible empathy and sympathy when no one else wants to listen or understands, but I want this to be more of a rare occurrence. I’d also like to feel empowered, find new elements of control in areas I didn’t know about.
Can I change my disease’s … No!
Can I find a way to manage them as a part of me so that at least half the time I don’t feel completely lost to them … Yes!
I write this today as someone who spent the first half of her day crying because on top of my conditions I have a slipped disk, this equals excruciating pain, not a lot of leaving the house and currently physio is has stopped making progress. Alongside this my pain management support requested months ago is literally months away … oh and did I forget to mention my job is in jeopardy. You can’t be fired for being sick but you can be let go if you’re not seen as beneficial to the business anymore – it happens, it’s reality and there’s fuck all I can do about it. I am doing my physio exercises religiously, I eat well, look after myself, will myself better … I am giving 100% and I have no more.
Despite all this it’s not a time to go into myself even deeper, I know because I have been there many times in the past. Yesterday I lay on my back starring up and the ceiling and its cracks, then for a millisecond the movie Donny Darko popped into my head (SPOILER ALERT – but if you haven’t seen it after all this time, why the hell not?) the end as the plane jet smashes through his roof onto the house with him inside. I mean … shit … I freaked myself out. I totally want to be here, I love so much about my life. I randomly have waves of realisation that one day I won’t be here and it truly saddens me. I want to embrace life in full and enjoy it, grow old and have enjoyed my life – being happy. I’m realistic – I am not struggling to access basic human nesessities or keep a roof over my head (currently). To be honest even with all the pain I’ve endured with my endometriosis and pcos I have never imagined things this morbid until yesterday. It’s like my slipped disk is the straw that broke the camels back, so to speak.
I’m sure others can relate.
During a time like this it makes sense to reach out for sure, but it you were returned with more negative stories and energy, further fear about “never getting better or finding a way to manage” imagine what this could do to your state of mind. I’m lucky, I have training to help identify these shifts in myself and seek out safe support. It’s taken years of practice after coming from a place of never wanting help, doing it my own because I am “strong” not weak. Well I can tell you from the bottom of my heart, that if I didn’t allow people in even after all the abandonment and crap, I would have a lot more bruises and cracks in my little beater than I do. It’s a strength to let people in and I am not selling fairy tales and bullshit, I know this to be true.
I feel like I’ve digressed but it was for a good reason, or a least a reason.
It’s not pity party, that is not why I’ve shared this moment with you. What I want for you is to be able to consider what you need in your darkest moment.
It could be many things, a hug, a snack, a change or scenery, a friendly face, the list is truly endless.
Part of this for me was finding the right community and I don’t necessarily just mean a group for your condition. I mean ANYTHING. I have many hobbies, things I am passionate about and through these I have made friends I never would have otherwise. Ok I may never meet some and yes we need to be SUPER SAFE when it comes to anything on the internet. However these random friends from eclectic groups are invaluable. They might not understand my condition fully but the right people don’t need to, as I said you can’t fix it after all. Having places to feel a part of something, share an interest and still feel able to be honest through times when you may need support is powerful.
The thing is everyone has an individual experience of the same disease/situation. Therefore whilst there is an expectation to feel understood or on the same page, it’s not a given. So branching out and being a part of several communities has been really helpful. It’s not for everyone, I hear that. I simply want to plant a seed for those who can grow it and find it helps nourish them emotionally.
I am in no way hating on the wonderful groups out there for endometriosis, pcos, or anything else. I am a member of several (after getting rid of all the morbid ones), I’m simply sharing an idea to branch out. Some of you may be stuck at home and considering trying something new, a new hobby, I really do say go for it.
So as I said before, Happy 1st of May.
I’m off to eat chocolate, do some more dam physio and have a cuddle with my love as without them I’d be lost.