So, its been a while guys. Life has really gone from 15 wtfs per hour to almost per second.
So, the last you heard I was probably still in my permanent strawberry walrus phase- one that has been a delightful reminder of how my body really isn’t a fan of just being around anything.
So, fast forward a few months- my apologise, and we are at a level of managing the problem and having a potential diagnosis (hooray)
For all of you wondering, we are now on a working diagnosis of mast cell activation syndrome- something that is, by all accounts, an absolute bastard. It’s not the worst, and I am counting my lucky chickens its nothing more disasterous- but it is a humdinger of a problem to have.
Basically put- my body reacts to everything, for no reason, whenever the hell it wants to. So, I am now more antihistamine than human- call me the histahuman from now on.
I still get bouts of strawberry walrus goodness to remind me that life isn’t simple- but in comparison to where I was this time 4 months ago, we are winning!
It is a case of good days/bad days, it flares up incredible amounts of pain when it decides to buddy up with the good old autoimmune arthritis- but I mean, a creaking, cracking, hive covered 30 year old is life goals for some! Don’t deny it!
I’m going to get pretty honest with you all right now. This summer was really hard- harder than I had ever imagined!
Before I start, and really dive deeply in to how what happened this summer really changed me- I cannot go forward without saying how unbelievably grateful I am to some of the incredible people who were there for me. Who would continually check on me, even when I was bad at replying. Who listened to me when things got hard, who showed kindness even without really knowing me!
Nothing I can ever write, say or do can ever begin to explain how amazing you all are. I’m hoping if you’re reading this, you know who you are and know that right now I will forever be grateful to have the pleasure of you all being in my life, whether that be in person or virtually- you made the journey far easier than it was. You will never understand how much of a difference you made.
I am going to be a bit brutal when it comes to how my brain worked this summer. It took a toll on me that I didn’t see coming. That made me get to the point, where whilst recouping at my sisters, I had some really really stupid thoughts. Thankfully a greyhound and a nephew kicked my butt and made me realise that in the grand scheme of life- what happened was really shit, but not worth those thoughts. So I am going to be truthfully honest with you about how much this impacted on me. I know the posts before were laced with humour- and they were all genuine- but you’ll see how I went from writing some good humoured blog posts, to being stood in a field not feeling strong enough to carry on another day.
If this is triggering for anyone, please stop reading now.
What has happened, definitely made me look at my resilience differently. I remember listening to a good friend of mines Ted Talk (big shout out to the gorgeous Dan Smith- follow him, he’s a delight). He spoke frankly about how its ok to not be ok… but what did that really mean? What are our coping mechanisms in the worst moments of our lives- and what the hell do we do when those coping mechanisms disappear in an instance?
We see the posters, we hear people saying “I’m here for you when you’re not ok” but when it comes to the dark gritty moments of stupid thoughts- I realised all my resilience and coping mechanism had suddenly disappeared and left me. Dan eloquently explains the impact this can have.
Now, for some, this may seem over dramatic. I know by no stretch was I the sickest of patients, I know it was a bit dicey at times, but realistically- I’m walking out of this with a condition, that with time, I can cope and live with. I’ve not been given devastating news, so why was I at the lowest I have felt in a very very long time.
Now, I know myself. I have suffered with real debilitating depression- I’ve known the isolation and the thoughts your brain can give you when you’re really not well; but I was at a point in my life where I had thought I had moved through this.
I can hear you all already shouting “for god sake you’re a nurse, you know this can happen at any time” but my non rational head thought I was past this. But each day I missed my normality, I felt my identity slipping away,I couldn’t make even the simplest of plans-I didn’t know what my body was going to do next so how could I plan anything? I was turning 30 and my original plan was to go and get crazy (responsibly) merry in Ibiza with the big sister, but I could barely make it up the stairs without sounding like I had an 80 a day habit, I was reacting to everything- so the fear of what could happen so far away from anyone who knew me, terrified me. I barely wanted to get on a train for 2 hours, because, god forbid this happened on a train with no one to help me.
I was becoming a recluse, I didn’t want to see people, I didn’t want people staring at my skin as it reacted to seemingly everything and nothing all in one go. It was making me lonely, which is insane, because I have never had as many people reach out to me as they had. The compounding factor of hitting the big 30 having not hit the milestones I had pressurised myself to in my life definitely it made it worse.
So, I hit my rock bottom- my job felt it had been taken from me, my confidence, my freedom, my joy- all gone in one fail swoop, then the straw that broke the camels back came. A dress! Yes, you read that right, a bloody denim dress.
I had had months and months of high dose steroids- which inevitably meant that I put on a ton of weight and started to loose my hair. So, I try on this dress for my first proper night out ( to a pub for dinner with the family- not the wild Ibiza style thing I was planning on)- and it didn’t do up! Queue a full Britney circa 2007 breakdown minus the shaved head with some excellent KimK ugly crying. So my sisters greyhound got pulled out for a bloody long walk whilst I cried the entire way around a very large field and I contemplated if existing was actually worth it anymore. I stood there thinking that no one would really miss me, and the ones that would, would eventually move one! This may seem like a really extreme reaction to a dress not fitting- and you’re right, it probably was. But at that point, all I could see were the failures in my life.
- My body was broken
- I couldn’t do my job
- I was single and with no prospect of a relationship
- I failed at my relationships in the past
- I didn’t have kids
- I was the last single girl in my friendship groups
- I was fat
- I was ugly
- I was useless
- I was worthless
- I had no end in sight to constant pain and discomfort
- I offered nothing to anyone
This is just the list I only now feel comfortable sharing- there are so many more. Many of these thoughts are always sitting in the back of my head- but normally I can quash them, or at least make them less vocal, but not this time. Every failure, every goal I had ever set and missed came flooding in to me, but that was then compounded even further with my normality being turned upside down.
Now this is not the first time my normal has been pushed- I have literally changed my life over night by moving from London after a decade living there to Manchester, where I knew one person- but I was in control of that massive difference in normal. This was a new normal I had no control over. A new normal that I couldn’t see a positive in. One that made every day harder because of another problem. My brain couldn’t cope- It was out, completely out- and there was no way of me pulling myself back.
The only reason it never happened was because Lulu the greyhound was with me. Lulu is a beaut- she really is an absolute lady, but get her in a field and off a lead, and she’s gone. My sister would never forgive me, and probably kill me (awkward…) if she lost her dog. She is the love of her life. I couldn’t do that to her… yet me not wanting to be here, in my head at that moment , wouldn’t be a bad thing for her. I stood looking around this vast empty field, thinking of what I could do, how I could end all of this, how I could stop being a disappointment to my family. It is now terrifying looking back on how determined my brain was to push me to think I’d be better off not being here.
So I walked back with every intention of leaving the dog at the house and going back- but as I got back to my sisters, there was a cup of tea waiting for me, and the biggest cuddle from my nephew. My sister looked at me and just said “You’re not ok”. I cried, a lot. No, I wasn’t ok, and I thought no one could see that! We chatted and although I never told her how bad my head was, she already knew, but she also knew that talking about it in that moment wasn’t what I needed. I needed a cuddle with my nephew, and a reminder that it was ok to be angry, that no matter what was going to happen, it was never something I was going to have to cope with on my own. That was enough to stop me. I couldn’t imagine never seeing that gorgeous boys face, never having another conversation with my sister, never joining forces with my brother in law to laugh at my sisters insanity.
That day, a dog, a baby and my sister saved me with the simplest form of humanity- a cup of tea, a cuddle and the moment of seeing through someone’s front.
I probably should have gone to my GP, but at the time, I felt that would have been the worst thing to do. I just needed to talk, and I didn’t want anymore tablets, I was already on over 20 a day at the time. So I did something really out of character for me- and I told my sister I couldn’t carry on like this much more. She got it and she did everything she could to help me, but never changed the dynamic of our relationship. It wasn’t all made about me being sick- both physically and mentally. It was trying to just do day to day things, without bringing up the strawberry coloured elephant in the room, but acknowledging it when I needed to.
The amazing work of so many people highlighting mental health, and it being ok to talk about it is amazing- but I still don’t think, on a human and personal level, we know what it means to not be ok. I still hid it, It has still taken me a couple of months to even write this- because I was afraid of backlash, or judgement. I tell everyone that their mental health is not their weakness- its their strength, but for me- it was my weakness. I felt like I couldn’t be unhappy, I felt like if I said I was struggling, the response I would get was “its ok to not be ok”- for me, that’s not what I wanted to hear. I wanted people to be angry with me, I wanted people to understand that this pressure I was putting on myself to be ok with not being ok was making it worse. I wanted to someone to see past the phrases and the inspirational quotes and see that this fucking sucked, and I wanted to hear someone say it was shit so I didn’t feel like it was all in my head.
It’s not something that is easy to explain.Even one that I can remotely put eloquently, but for those who do feel this way- they totally get it.
I am not saying that things like “its ok to not be ok” are not incredible at helping to normalise and start the mental health conversation. But for some of us fighting them- it can be infuriating because we are not ok about not being ok, and we want people to understand that too!
I, by no means speak for the mental health community- my mental health has very much been based on the situations I am in. I am lucky enough to understand my triggers and how to cope when things are starting to get to much. But as someone who deals with my own mental health on a daily basis, yes, I want to know its ok to talk to you, but I don’t need it plastered all over the walls of every where I go. I don’t need to have the constant reminder that I’m not doing ok with not being ok; because that makes me feel like more of a failure. It makes me feel like I should embrace not being ok- and for me, that makes me worse. Coping with situations and stress and being ok, is my coping mechanism- so when that’s also taken away from me, I am someone who needs to be angry about it and have people being angry about it too.
I may have a controversial view on how I feel about my own mental health- and please do not mistake my own experience for how I think others should deal with it. But everyone’s coping mechanisms should be embraced, and if being ok is a coping mechanism then that shouldn’t be seen as a bad thing either.
Whenever I see something mental health related, I always end my tweets with #MyInboxIsAlwaysOpen because I want people to want to talk about it. I am so pro people opening up the conversation- but just remember, some of the people facing it are not as simple as a quote on a poster, or an inspirational message posted once a year on mental health awareness days.
It’s hard coping with anything related to your mental health. The more you talk about it, the more normal it gets- that’s without a doubt; but I guess I wonder if instead us needing quotes or posters or campaigns- we need people to just be a bit more human. If you see someone struggling, tell them you can see it, and just let them know you’re there. I was at no way in a place to discuss what had gone through my head that day with my sister- but her seeing me as a struggling human being, was enough to reset me that day. I know that is an incredibly lucky thing, and maybe I am the exception that this works for.
I guess what I’m trying to say is, be kind, see the human in front of you for exactly that. Take away the unconscious bias, take away the perceptions and just ask them the simple question of “Are you ok?” It could be enough to save a life.
