If I had 3 wishes.

A friend sent me in the direction of Kate Bingham this morning, suggesting I could ask her any questions I have or ask for her to support my fight. She was the head of the Vaccine Task Force, in charge of bringing a vaccine to the British market in a race against other countries. I said I wouldn’t even know what to ask her or how she could support me. How do I need supporting? What can she do? What questions do I want answers to?

The truth is I don’t know the answer to any of those questions. I struggle asking for help, which it turn makes it hard for me to acknowledge where I need help. So instead I let my mind talk me out of deserving help.

I know I am part of a minority group – perhaps several. A minority who has this horrible condition and a minority who have been negatively affected by the vaccine. I know I’m not the only one impacted by the vaccine but should I continue to allow my mind to use that as a reason to deem me unworthy of help? Unworthy of putting myself out there, exposing myself and my woes to world, in order to access help. Because that’s what my mind is doing. Why should I be more worthy of help than others in these minority groups? But on the other hand, aren’t we all worthy of the help we need?

If I was to rub a lamp and have a genie ask me my 3 wishes I know the first thing that would come to mind is that I wish to have help with my debt. But it’s MY debt, why should I ask anyone help me with that? But it’s also my biggest stress right now, it weighs heavy knowing I have just one month before my credit is severely damaged for 6 years. With my car not selling I have no way to deal with this stress myself. So my mind says that is the more immediate worry to make a wish for.

But should that be my first wish? I feel I should be wishing for my pain to stop and be on the road of rehabilitation. But I also know how much I’ve gained from this journey through pain, the time that it’s granted me to find myself. To heal my demons and know how I want my life to be on the other side. But maybe there’s a part of me that doesn’t feel the finding, the healing or the planning is quite finished. Or perhaps I’m just not quite as scared as I thought I was to see this journey through its natural course. Because the fight it has forced me to find within myself has helped me grow immensely as a person. That I still have to have help to assert myself and my needs to my healthcare team perhaps says to me that I need more time and more experience in finding my fight and asserting myself. I should wish that this never happened to me, that I never had the vaccine. But if I hadn’t I’d probably be the same people pleaser, allowing my life to be led by others and not living a life for myself. I wouldn’t have started to find my true self because I’d be sat in therapy discussing the normal stresses of life and work. I wouldn’t have addressed the most important issue of who is Chloe Price.

Now for my third wish. I honestly don’t think I have another. Despite everything, my situation, my worries, my pain and that of the ones I love, I truly don’t think I’d wish for anything else. Because for everything I’ve lost I have gained so much more, it’s just not always easy to see that. It’s not easy to see past the pain or stresses unless I’m feeling particularly reflective. Perhaps I’d wish that dogs lived as long as humans. That I could share the rest of my life with Bella as she will share the rest of hers with me. That neither one of us feels the grief of losing their soul mate. For she has shown me more about resilience, about being present and grateful, than any other experience could have taught me.

N.b: I know I discuss my debt a fair amount in my journal, probably because it takes up so much of my mind at the moment, but also because I know it makes me feel shame. Shame that I ever let myself get into debt, shame that I haven’t cleared it, shame that I let it get out of control. Mostly shame around the person I was at the time that created this debt out of trying to fit in and be something I wasn’t. But I’ll never remove these parts of my blog. I will discuss the things that bring me shame and discomfort. Because if debt makes me feel shame then I know it makes others feel shame. As a society, the majority of us have debt, whether that’s from car finance, phone contracts, unexpected vet bills, gambling addiction etc. The point of my journal is to share the good, the bad, the ugly and the shame. Shining a light on it so as someone else doesn’t feel quite so much shame just by knowing they aren’t alone.

Thank you.

I started sharing my journals because I’m no longer afraid to share my experiences or my struggles. In truth I find it easier to talk to no one in particular than talking to someone face to face. I worry all the time about sounding miserable or a burden. It’s something I discussed with my therapist.

In one of my earlier blogs I discussed the traditional of saying ‘hey how you doing?’ And not in Joeys voice. The worry about whether the person means it, or are they expecting a ‘good thanks, you?’ Are they truly prepared to hear the ‘not so great’. It’s something that worries me greatly in these situations. But my therapist said there’s a huge difference between offloading or ranting and being honest while taking responsibility. For instance rather than saying something like ‘my life is terrible, I’m in so much constant pain and I’ve got no meaningful existence and just everything sucks right now’, what my response should be is ‘I’ll be honest, I am struggling with my situation and the pain that I am in. But I’m doing the work in therapy and I’m fighting for a treatment that will help me get my life back on track.’ See, I took responsibility of my situation.

Anyway I’ve side tracked a little too far. What I wanted to discuss is that through sharing my journals on my blog, through talking to no one in particular, I am having a lot of meaningful conversations. I have people reaching out to me and I’m seeing friends and we’re having these really open, vulnerable and honest conversations. I’m discussing with people things that have or are helping me and vice versa. I’m having people ask about therapy, how am I finding it, does it help, where do I find a therapist. I’m able to have the uncomfortable conversations with people around me that are part of my healing process, part of helping find who I truly am.

This is what I wanted from my blog and I didn’t really know it. I’m not educated in the field of mental health (right now) but I’m able to talk to people from a place of experience. Some people feel that, while they aren’t ready to publicly discuss their struggles, I am a safe place to come to. And let me tell you, it means the world.

The point of my blog was to help others. I needed to find meaning and purpose in my current suffering in order to feel a lot less hopeless, helpless and suicidal. And with each message I feel I’m achieving that, I am helping others. I received one such message last week where I was told reading my blog helped the person feel a little less alone. I mean what more could I ask for?!

So I guess I wanted to thank everyone – Everyone that spends time reading my blog, sharing it or discussing. Because you’re helping me find my purpose. You’re helping others find a little peace or a safe place to talk. I know it’s just a little blog that doesn’t get a huge amount of traffic – but even that small amount of traffic is helping others and helping me.

Not my burden to bear.

I wanted to use my blog to help others, by sharing my journal entries with the world in that it may just help one person. I had a message last week after my mental health blog to say that the person felt a little less alone after reading it. That is my goal, to help people feel less alone. I share a lot on my current situation with my Hemicrania Continua. But it’s not all I can share, my journey has come in waves over the years and my head is just one part of it. So over time I hope to discuss a little bit of it all, in no particular order. I just write what I feel like writing, when I feel like it. This one came to me in a dream last night, and that’s why I’m here writing about empathy.

It’s a desired trait. You often hear people say ‘have a little more empathy’. And it’s funny to me that what is considered a desired trait is one of my burdens. Empathy comes in varying levels. Some people have very little, others have far too much. I fear I fall into the later category. It’s something that I have to continuously work on, to try and maintain some degree if separation in order to protect myself. But I often fail with this.

My empathy is on a level that really impacts my day to day. I can sit down with a friend and know that something is wrong. I know whether they’re feeling anxious, worried, sad. Because I feel it too. I pick up on other peoples energy so easily. If someone is so overcome with emotion that they’re crying, before I know it I’m trying desperately not to cry, not to feel their pain. Because I do, and it’s so hard to stop that. It often lands me in situations where I have to remove myself because it is not my place to break down, it’s not my place to be overcome with someone else’s emotions. It’s also probably why I have in the past been a people pleaser, a yes man. Because then I don’t have to feel their negative emotions.

It’s also why I have such difficulty telling others when they’ve hurt me. I know that horrendous feeling of guilt or pain knowing that I’ve hurt someone, never intentionally, but it’s a part of life. So if I tell someone they’ve hurt me, I suddenly feel that emotion, that weight of guilt. But I need to learn that it’s not my responsibility. I cannot be responsible for someone else’s reaction or feelings. If someone does wrong by me, and I need to raise that issue with them, what they do or feel next is NOT my responsibility.

And I wish that this was just an issue when I am with someone. But it’s not. I don’t need to be in the room. It can happen when I’m watching tv. A perfect example, and it’s absolutely ok if you laugh at what I say next, is when I was watch Jurassic World: Fallen Kingdom. If you haven’t seen it, there is a spoiler coming up and I won’t be held responsible for your reaction. So the volcano is erupting, and they manage to sneak onto the boat as the lava is engulfing the last of the island. And there on the dock is some dinosaurs that followed them down the mountain to the boat. Dinosaurs that didn’t make it onto the boat and the camera fucking stays watching them, the ones left behind, abandoned, as they too are engulfed by the lava. Now when I say I balled at this, I mean I was full on can’t catch my breath sobbing. Because suddenly my whole body was feeling the abandonment. I hurt, because I have felt abandoned, betrayed, neglected. And suddenly here I was, inconsolable, because I was feeling what I would have felt in the place of the dinosaurs – because I don’t know if dinosaurs feel that stuff. So now you can go ahead and laugh, but for me I had to change movies. THAT is the level of my empathy. That a fucking cgi dinosaur, on a fictitious island, with fictitious lava, absolutely broke me.

I guess a lot of the empathy I feel is based around feelings that I’ve experienced first hand. But that something totally make believe could break me like that, that I can pick up on what someone is feeling without them disclosing it in anyway. How does someone protect themselves from that? Well, it largely comes down to trying to maintain a level of disconnect. Trying to rationalise with my mind that these aren’t my feelings to feel – they are not my responsibility. Not allowing myself to be fully absorbed into whatever I am watching. And they all have one thing in common – I have to remain present. In the real life moment I am experiencing. I won’t lie I haven’t mastered this. I mean I am quite good at remaining present, this has come through years of practicing mindfulness, and I feel a really strong mind, body, soul connection. But it doesn’t always come easy. And it doesn’t always protect me from feeling what other people are feeling. Growing up I used dark humour to deflect, often in very inappropriate situations. Now I have more awareness and, while I still love dark humour, I also know when it is and isn’t appropriate. Maybe one day I’ll master the art of protecting myself from the weight that empathy on this level brings. For now, it’s definitely a work in progress, with regular failures. But that’s how we learn. When I master it I’ll let you know the secret.

If you could start again, what would you do?

When I found my therapist Lee I was in a terrible way. I’d completed the SilverCloud online cbt course I was referred to by the doctors and it left me in a really dark place. I found myself constantly battling suicidal thoughts and feelings not understanding where I’d gone wrong. I thought I’d gotten myself to a good place with my mindfulness practices and then suddenly I didn’t want to live anymore.

I’ll be honest and say I don’t really remember those early days with Lee. So much has happened in these two years it’s hard to think back to that time. Perhaps it’s memory, perhaps it’s a mental block. A time I wouldn’t like to return to. Lee incorporates mindfulness practices into our therapy. We meditate, we tap, we realign chakras. Each session varies – sometimes we just chat about anything and everything, sometimes I sit and sob, sometimes I’m in a really detached place and don’t manage to get a lot out when I probably need to, and sometimes we even laugh. Lee has this wonderfully calm energy, she makes you feel immediately safe within sessions. It’s like chatting to a friend rather than therapy. But she somehow always knows the right things to ask or to say that get you fully opening up.

I’ve often logged into a session thinking I feel ok, then a mere 10 minutes later I’m a blubbering mess discussing some deep trauma I didn’t even know I remembered and stored for so long. It’s done in a good way, in a safe way. By bringing these things to the surface, facing then head on, shining a light on it so that trauma is no longer feared. I cannot tell you how much fear, anger and resentment I’ve been able to let go of in these last two years.

Through finding Lee I have started to find myself. See my whole life, or at least as much as I can remember, I lived based on other peoples needs. I always put others needs ahead of mine, in every decision, every action, every thought process. My perception of who I needed to be to be accepted, my need to ensure everyone else’s needs are met first and foremost. So I never got to find myself because I was to busy changing to conform for other people. I’m now 29 and just starting to feel like people are meeting the real me.

I’ve held a lot of resentment around my current situation. My inability to work, to have any form of meaningful existence, to no longer be able to train or walk my dog often. To have found myself disabled all in the name of protecting others. It’s hard not to have resentment for that. But if I keep a hold of that resentment, that anger, all I am doing is driving myself to a darker place. This is something Lee has managed to guide me though, because that resentment and anger doesn’t serve me. I can’t change what’s already happened. I can’t hop in a DeLorean and undo having the Pfizer vaccine. It’s done, and I have to accept that. But that’s also something Lee and I talk through, the fear that if I accept my situation, does that mean I’m giving up my fight for a cure? It doesn’t, I know that now. But mental health is not linear, some days I feel that resentment and anger rise up. Other days I feel like I truly accept my situation, but also maintain the drive to fight to get my life back. It’s a strange balancing act, but so long as there are more days of acceptance than there are days of resentment then I’m making positive progress.

Right now, writing this, I know that I actually feel grateful for my situation. See before I got ill my sessions with Lee had gone to once a month. Yes, I was in that good a place. I was looking forward to a summer out of lockdown, with my friends and family, continuing to find myself and let the real Chloe be seen. Looking forward to using all the tools Lee taught me to combat anxiety and fear. A life where I could control my social anxiety. But then I took the vaccine and my plans and hopes fell to the sidelines. I was absolutely broken. After just over a month I increased my sessions with Lee, I was not coping in this pain and disappointment. Through these last 16 months Lee has helped me want to survive, she’s helped me find meaning in my suffering. She encouraged me to start this blog, to use my want to help others to give me a purpose while I can’t continue my life as it was.

Back to what I said, right now I’m grateful for this situation because it’s given me the gift of time. It’s stripped my life to the absolute basics, removing all distractions and obligations that come with adulthood. I can’t work, most days I can’t get out of bed, I can’t sit and watch tv, I often can’t drive. So I’m left with time and not a lot of things I’m capable of doing to fill it. It’s given me time to continue finding myself. Time to reassess my life and identify the things that really matter to me. Through my sessions with Lee I’ve battled through suicidal intentions time and time again. I’ve said before how I don’t speak up for myself. But she’s helped me do that, along with my friends. I’ve sent out many emails and letters demanding to be seen and heard, demanding for the help that I need to find a treatment that works.

But it’s not just this situation Lee has helped me with. Let’s not forget the fateful journey to Eastbourne. The catalyst. Through my sessions with Lee we’ve looked into why I am the way that I am, or was. Why were everyone else’s needs more important than mine? Why weren’t my boundaries being respected? Why wasn’t my voice being heard? Why was my anxiety crippling my ability to make connection? Why was I ending up in abusive relationships time and time again? Why did I end up on a cliff in Eastbourne? We’ve been through it all. Lee has helped me have the difficult conversations with myself, with my family, with my friends. She’s helped me understand myself. We did a lot of inner child work, a lot to honour little Chloe. To ensure that she never goes unseen or unheard again. That her needs are met and respected. I’ve never been one for lying. I hate it, like a really deep loathing. I find now that while I’ve always tried to be honest, I often chose to keep my mouth shut. Because I didn’t want to lie but I didn’t have the strength to tell the truth either. To say someone has hurt me, to be there for my friends and family in the most honest way possible. To ask them the uncomfortable questions and talk about the uncomfortable truths. It’s why I know the friends I have are friends for life. Because through this honesty we help each other grow and flourish and be the best versions of ourselves.

I don’t know what my life looks like on the other side of this journey. I know now the things that matter. I know that time matters, because we don’t have enough of it. Time with friends and family, time with Bella, time with myself. Connections and maintaining those are vital. Love is vital. And I don’t mean you gotta have marriage and kids and blah blah blah. I mean you have to live with love, love for yourself, for nature, for the planet and everyone in it. Whatever you do, do it with love. Someone’s annoyed you? Raise it with them, from a place of love. Making dinner? Make it with love. Find the joy in all the simple things. I know that helping others is truly important for me. I know that I want to minimise my stress as much as anyone can, because I don’t tolerate it anymore. Travel is important. I never made enough time to travel, I always had an excuse not to. To not take holiday from work and see the fucking world. What a waste! I want to take more photos. Don’t get your hopes up, it does not mean I’ll be using my phone more, I still hate technology and I’ll never enjoy texting. I mean I want photos to document the memories I will make. Because like time, memories fade.

Before meeting Lee my life was not my own. My life was what I thought others needed of me. It’s sad in fact thinking back to how I lived for over 27 years. The things I missed out on, the things I’ve regretted, the things I’ve allowed to happen to me. It’s truly very sad. And perhaps one day I might share a little more on that, but I’m not quite sure how right now. But I met Lee, and she’s guided me to a place where, probably with more guidance still, I will move forward with a life that is true to me. A life full of love and memories. Making time for the things I love, listening to my inner child and her needs, listening to what’s in my heart when I need a little guidance. Lee has provided me with this, and my current situation has provided me with time to strip everything away ready to start again. Chloe Price take 2.

The above is probably very jumbled but the point I wanted to make, if the above isn’t clear, is this – I’m 29, in a horrible situation that many wouldn’t survive. But I’m also 29, ready to live a complete different life – my own life. My own life with my own values. I have a voice, and while sometimes I still need a little help, I’m prepared to use my voice. To voice my needs. To ask for help if I need it. I’m 29 and I’m excited to live something totally different, to do things totally different and with the drive and tools to combat any suicidal thoughts. Because I now want to live and am ready to truly live. I now understand the traumas I have been through, the things that lead to who I was and how I lived before. Now I have the strength, tools and support of a therapist to deal with anything that comes in the way of living this new life. THAT is the power of therapy.

Cherish your wins.

So I’m having a hell of a day and I wanted to share. See sometimes from bad comes good, and you’ve got to take your wins when you find them. Especially when you’re in an extended period of suffering – cherish your fucking wins!

It started off with having to call one of my creditors. Everyone dreads these conversations, but if you’ve ever had them then you know actually the people are lovely. I always come away from them feeling such relief and calm and today was no different despite the subject. Currently my income still outweighs my outgoing. I lost my income due to not being able to work back in May. Since then I’ve had to sign up for universal credit, esa and pip. I’ve no shame in saying this, I did at the start. But I am entitled to this. My situation is not my doing, it’s a consequence of my circumstance. However, my debt was mostly my doing. There was some financial manipulation involved for some of it, but it’s still my debt so there’s no making excuses. Because my outgoings are higher than incoming I’m not able to pay towards my debts. These are non priority payments. My nil payment plan on one of them ran out today, and yesterday I was supposed to have a health assessment to grant me more money but it got cancelled. So I had to call them with no news, no change sir, I’m broke sir, help me sir. And he did. He was fantastic, we laughed, we got serious, he supported me. He made sure I was ok in every other aspect, mental health, physical health, treatments. Amazing. And he offered me a further 3 months breathing space. A diamond is what this guy was.

I’ve been trying to sell my car to clear my debt. Now I don’t want to, let me make that perfectly clear. This is my dream car, and she’s mine! But I don’t get to drive often, and never far. And by selling the car I can clear my debt entirely. I have no other options. My other debt nil payment plan runs out in December, after that it’s a default and a 6 year mark on my credit. It’s what will happen with the other one in 3 months if I don’t raise the funds, or find myself able to make payments, to keep my credit clear and remove this enormous stress which is no doubt impacting my health. So it’s a choice of being debt free (if the car sells) or keeping my pride and joy, keeping my debt, debt stress and damaging my credit score. It’s a no brainier. Well it was in theory. Today I’ve received a message and someone finally wants to come look at my car. I won’t lie to you, there was a moment – Just a blip – Where I thought, tell him it’s no longer for sale. I didn’t, because debt. But I was pretty tempted. My pride and joy is also the final part of independence I have. Parents especially end up driving me most places – it’s like I’m 14 again and being driven to a nappy night or a ‘sleepover’ where we drink in a field till we pass out. But when I do think I can drive, you bet your ass I’ll use as much fuel as my head will allow. Despite this, I know this interest in my car is a good thing. It’s my only way out of this situation, so I guess it’s giving me independence in another way.

Next on the list – my mum, the smart old dear that she is, made an invention for me. I struggle with my head pain so bad, particularly at the moment because covid has got me good. My head pain spreads to my neck, my head feels like it’s too heavy for my head. We don’t have a shower, and often it is too painful for me to lean back in the bath as my head and neck are unsupported. So she’s rolled up two towels tight and zip tied them in place. It floats – and my head and neck are supported and for the first time in forever my head feels weightless. No neck pain, head pain is still thumping it’s tuneless beat round the top, side and front of my head and faces but no pain at the back. This has made me feel so much better just to get a respite from some of it. Anyway, that was 3 hours ago and I’m still here. Floating, tapping into my journal, shrivelling.

Also on the covid front when I say it hit me hard I mean I’m not in hospital – I assume they wouldn’t let me bath for 3 hours. But it hit my chest, my breathing was pretty rough, my head has been unbearable, everything either tastes of sick or nothing at all, and I wasn’t able to stomach eating or much drinking for a few days. Anyways covid is on the mend, I had a toddlers dinner last night, tasted nothing but I enjoyed the sensation of eating it nonetheless. So my head – I take 200mg pregabalin, 300mg made me too high, and it doesn’t do a lot but it’s better than nothing. The other day I was like I’m going to take a little more and see if it helps. I’m talking 25mg here’s, a micro-dose if you will. What a fucking error. I’ve never been so high in my life. I could hardly stand or walk, my eyes were just rolling free will around my head. Like I had no control, I could stop them. Obviously I woke a few hours later in my chair and I carefully made my way to bed to sleep that off. So I emailed my neuro this morning, asking what else I could do. Which I know I’ve tried everything they’ve got to offer, but something might have come out overnight- you never know. Obviously she said I’ve tried it all, should ease alone with my covid. BUT she has said she thinks my next port of call should be a pain clinic. I hope it’s not instead of seeing the surgeon, but maybe they might just be able to do something to help me cope in the meantime.

So there’s my wins for today. Sorry I waffled, but I waffle in all my journals and by this point I probably shouldn’t be apologising anyway. I hope you’ve had wins today, it doesn’t have to be big – it could just be making food, getting out of bed, lying in a bath for 3 hours. But these are still wins and they should be celebrated as such.

The Power of Therapy and Friends.

What a broad title. I could probably write a book on the power of therapy alone, purely from my own experiences. But I’ll try and limit it to a mere dissertation on one key subject – mostly.

For most of my life I felt like I didn’t fit. I was a square while the space available was for a circle. I didn’t fit at school, I didn’t fit outside of school. This I found was more of an issue when trying to form friendships, because I would try so hard to be a circle. My perception of who I needed to be in order to fit in with a group. So I’d bounce between all the different groups at school, never quite fitting into any but like I was accepted at a distance. Id say and do things that felt so so wrong in a bid to be accepted, to find my place. To find somewhere that would fully accept me. Of course it never happened, because I was never myself and I didn’t even know who I truly was. I’d made myself malleable, which also made me easily manipulated, and easily bullied.

The truth is it wasn’t just the doing and saying things that I thought I should be in order to be accepted that made me unacceptable. For years I had thoughts and feelings that I could never understand. At times, and hand on heart this is the truth, I worried that I’d turn out to be some psychopath that they make documentaries about. Not that I’d be that infamous, but that one day I might turn out to be that messed up. I thought there was truly something wrong with me. My deepest fear was that someone would see through to the real me and confirm that there was something wrong and disturbing about me.

But those thoughts were a product of my environment. I went to an all girls school as a day student, though a large population were boarders. The majority of which were international students. I’ve met some of the most wonderful people I know there, but I’m not in touch with any of them. Because I wasn’t me, and so I didn’t fit. But as most can agree, teenage girls are worse than teenage boys. I suffered some horrendous bullying which had a massive, and lasting impact on me and who I am. Particularly in my later years at the school. But during my early time there, there was a lot of homophobic comments or suggestions that as I said – made my thoughts a product of their environment. Made me believe that there was something wrong with liking women as a woman. That there are dos and don’ts . Don’t make eye contact with her or she’ll think you’re into her and come onto you. Don’t sit near her, she’ll touch your leg and try it on with you. Because of her electric toothbrushes are banned. They even made up lies constantly about things some girl did that proved she liked women, as if this was the greatest sin. You see I then developed a fear of eye contact, and physical contact even if accidental. Particularly if it was accidental.

I didn’t realise as I went into adulthood that I was suffering from severe social anxiety. Anxious that I didn’t fit in, anxious about eye contact or physical contact. Anxious about someone seeing the true Chloe – the weird, potential psychopath, being all awkward. The fear of being outed as this version of me I truly thought I was.

My anxiety made me suffer more in group settings, particularly with people I didn’t know. I know now that due to my anxiety I have unintentionally hurt others through my actions. Actions sometimes purely due to anxiety taking control, and actions I thought I needed to perform in order to fit in and be accepted. But I didn’t know I had anxiety. And when I say it makes me sick knowing I’ve hurt someone, I mean it can literally make me sick. The knots and weight and ache in my stomach from the guilt of finding out I’ve hurt someone. Because I know what it feels like to be hurt time and time again. But because I didn’t understand that my anxiety or compulsion to conform was fuelling these actions all I could offer was a measly apology. No explanation , sometimes I’d give some excuse I’d concocted because I didn’t know why I did these things either. I can’t change what I have done or any hurt I’ve caused in the past. But I truly wish I could go back and explain myself truthfully at the time.

When I started college over 12 years ago I met two women who are my closest friends. They’re family to me and I would do whatever it takes to never lose them. One I’d met before, her sister went to my school in a different year and we’d met a few times when I’d go round to hang out or at parties. I walked in and sat with the one person in the room I’d met before, Hannah. Because it’s a lot less scary being in a room full of strangers when you know one of the people vaguely. The woman she was sat with was Darcy. Somehow I wasn’t scared or anxious around these two. I never have been, even though I didn’t really know them. My mind just told me these people were safe. I’ve been closed off in the past to some extent, to protect myself, but I’ve never felt the need to pretend I was someone or something else around them. I found my people.

It wasn’t until I was around 27 that I had a moment which made me subconsciously explore my thoughts and feelings. I met a friend of a friend, a lovely woman, who scared the shit out of me. I felt like every time we made eye contact she could see deep into my soul. I was both attracted to her and terrified in equal measure. I felt like my deepest fear had come true and she could see me for who I thought I was.

Gradually these thoughts and feelings became unavoidable, and then one night out after far to much tequila I asked Darcy ‘what if I like women?’. She informed Hannah of this on her way home – I think they knew that this was a monumental moment in my quest to finding myself. Between them they ensured that this didn’t go brushed under the carpet and forgotten about and we have discussed it at length over the years. My people, my safe space. But Hannah especially raised this plenty, as we lived together for nearly 4 years she saw first hand the depth of my anxiety and pain. The changes in me around different people.

It wasn’t until I was 28 that I finally discussed this with my therapist. It wasn’t until I was 29 that I came to a place of acceptance and understanding. AND THERES NOTHING WRONG WITH ME. I’m not a fucking psychopath. There’s nothing wrong with me and suddenly these intrusive and shaming thoughts have gone quiet.

See therapy has brought me to this place. A place of acceptance and understanding. I’ve finally found the real me and been able to accept her with open arms. This weekend I got to come out to my closest friends at a party – while sober. One of the women there, who I have hurt in the past due to anxiety driven actions, said she felt like she was finally seeing the real me. Let me tell you, the emotions I felt in that moment were crazy. I felt pride, but mostly I finally felt like I was an equal in that room. Just a beautiful group of women who were all, unapologetically, themselves. And suddenly so was I, thus making me their equal. I finally found my home, a space that I fit in perfectly just as I was. A space the universe held for me that was exactly my shape and size. I also felt I could finally forgive myself for all the hurt that I’m responsible for because I didn’t find myself sooner.

I still have growth to make. Wounds to heal and things to battle. My social anxiety has not vanished, and while these intrusive thoughts are a lot quieter now I’ve identified what’s behind them I still need to work through it further. See those intrusive thoughts didn’t just stay in one part of me. It wasn’t just don’t make eye contact with women or physical contact. They spread like the rot they were to other parts of my thoughts. Analysing every movement or action I make to ensure I’m not labelled something worse than someone who likes women. Fear around children, fear around taken men, fear during almost every interaction with anyone I came into contact with. Because those initial thoughts spread, and they created this fear inside me that there was some disturbingly wrong with me. I know different now, I’m not a psychopath, I’m just a normal human being. This is just the symptom of the rot that spread from what I had drilled into me growing up. The fear of the label. I’m bisexual, but I am not a danger to society. But that healing has already started, I’m so much more comfortable already around all sorts of people, because I no longer fear being falsely labelled because I’ve identified my correct label.

See the power of friends is this: I’d have never reached this place without meeting my people, sitting in an art class. Without them I’d have never met that woman who I felt saw through my charade. And without friends who were open and accepting without judgement, encouraging me to search for my true self, I’d have never reached this point. The power of therapy is this: without it, I’d have never found acceptance for myself, I’d have never loved myself enough to stop hiding and pretending. I’d have never fought to bring my true self into the light to be seen and open to judgement. Yet somehow I don’t fear this judgement and I don’t fear being seen. THAT is the power of therapy and good friends.

Mental health

This one will do what it says on the tin – the journey with my mental health. I’ve spoken about many things on my blog, and off my blog, but I’ve not discussed my journey with my mental health. And it’s a hell of a journey, so apologies if this is long. Even though all my posts end up being short stories.

I don’t even know where to start, because there never really was a start that I recognised. There was a turning point, a shock realisation, but not a definitive start. I guess winters I’ve suffered with what I referred to as winter blues since I was a teenager. I was just a little mopey. I always put it down to my parents divorce, it wasn’t peachy at the time. It ended up being separate Christmas’s etc. I assumed that was the cause of Christmas not being a festive time for me. Though that changed many years back, and while still divorced, they are on great terms and we share family Christmas once more. But my blue continued, perhaps wounds yet to heal.

I’ve been in 3 serious relationships in my life. In that they were seriously toxic and sometimes abusive. The second one in particular affected me mentally, it caused me to alienate my friends during the length of the relationship and it wasn’t until a year after that I felt sufficiently less embarrassed enough to get back in touch with them. Post relationship I was a wreck, he lived with me. The abuse went on under my own roof, and it was several months after I ended it that he finally moved out. I spent that time sleeping on the floor in the spare room. I didn’t recognise after that I was suffering from the mental damage caused. I thought I was just sad, as we all ate at times. When it’s just sad and not poor mental health. Looking back I now know I was wrong, it was poor mental health.

As a person I am a people pleaser. I’ve done things I’ve not wanted to do, because it’s what the person I’m with wants. I didn’t tell people when they’d hurt me, I didn’t stand up for myself. I’d stand up for others, but never myself. I’d never address my own needs, because I thought others needs were superior to mine. I was easily manipulated, easily submissive and easily ignored.This has played a huge part in the demise of my metal health.

In 2019 I was in the 3rd relationship. I remained guarded and took it slow before I felt like this person had good intentions. From my view, I was sorely mistaken. And then manipulation and gaslighting really picked up heading into the winter, particularly financial manipulation. My “winter blues” were particularly bad that year. The relationship became increasingly bad through into the new year by which point my friends sat me down and addressed the concerns they had for my mental health. Of course I told them it was just my usual winter blues, it’ll pass.

As I said in a previous post, I lived with Hannah for nearly 4 years and she saw during that time that my mental health was not just winter blues. It was something that impacted me in all seasons. So she of course pointed this out to me and said I don’t think this is winter blues, this is serious and we’re concerned. Fast forward to the end of February 2020. I was not in a good place, but I still didn’t recognise this fully. My relationship was really damaging by this point, and the person got a thrill out of kicking me when I was down – called it just making jokes. 29th of February I was competing in Eastbourne and I was mentally getting messier by the day. I had to weigh in the day before and I decided I wanted to be alone at this competition, told my partner I was going alone. So on the 28th I drove down first thing, very early, ready to weigh in at 9am. I weighed in and took myself off to get the biggest breakfast I could find, as is tradition after all my weigh ins. Throughout the entire morning and afternoon I was getting guilt trips and vicious messages from my partner for going alone. Zero support, just abuse. He knew what he was doing. Looking back I now know I was what would be described as manic, and probably had been in that state for a few days. I didn’t want that to ruin my trip. Every qualifier competition I pick a new destination to go to and explore it with my family the day before my comps, after weigh in. So I told myself I was going to do that even if I was alone. I’d scouted out a few places prior to the trip, starting with beachy head light house. I’m not sure if you can remember but that weekend was horrendous storms, torrential rain and exceptionally high winds. So I headed off, driving up the beachy head cliffs. The wind constantly threatening to roll my car off the road the closer I got to the top. And suddenly I was calm. Pure, blissful peace. A good place to die.

That was how I felt, I was suddenly at peace and knew what I needed to do. I couldn’t see for torrential rain, low clouds etc etc and I wasn’t sure I was on the right side of the road so I pulled into a lay-by around where the lighthouse should have been, right at the top of these cliffs. I got out with the wind trying to force my door shut on me and a car pulled up. Coast guard – it’s not safe up here miss, you need to turn around and head back down. Through the rain that had soaked me through they couldn’t see the tears streaming from my eyes. Yes of course, sorry I was lost. So I got back in my car and turned around, they’d just driven off and I pulled into the lay-by opposite the one I’d just pulled out of. Still this feeling of calm, peaceful determination. It may sound selfish but I had no thoughts of anyone else, just a need to maintain this peace. So once again I got out my car, but as I was facing the other direction to before, the wind didn’t try and blow my door shut of me, it blew my door the other way. It snapped the hinge and suddenly I was trying to hold onto the door that the wind continued to try to rip from my car. I got out and used my weight to pull the door back round, quickly jumping into the car. The door wouldn’t shut, it was completely out of line, along with the broken hinge. The first thing I could think of was to use all charging cables, crack the windows a bit, and tie it to the pillar, between the front and rear door. All the while I sobbed. Deep, heart wrenching sobs. And I couldn’t stop them. Door semi secured I just sat and balled. I eventually called my insurance who told me I had to remain where I was, in 70mph winds threatening to roll the car, and recovery would come get me. I then called my dad with some bs story about I thought the wind had thrown something at the car and I got out to check for damage etc. I was only on my way to a pub that had great fish and chip reviews. He would then start making his way to Eastbourne, as it was a non fault ‘accident’ I wasn’t entitled to a hire car via the insurance. I was still sobbing. I called my mum, sobbing, and I recall saying ‘I just wish this wind would blow me over’. I think she then knew what a state I was truly in. She got my brother to call me, making jokes about turning my door into a kite. My sister called and as a fellow mental health sufferer immediately knew where I was, in a deep manic state. After 3 hours of bouncing between family members on the phone I suddenly no longer felt safe on the cliff and instead drove my car the half mile to the pub where the coast guards were based. As they’d been checking on me every half hour I think this was a relief to them too.

A post on my therapist blog, www.tomlintherapy.com, discusses a little more about the mental state when you’re suicidal. It describes it better than I ever could: “you are not there for me In that space, your love or existence doesn’t matter to me. That may sound harsh or brutal, but if you think about anyone that has ever committed suicide, if they were thinking about how much they loved someone or how much that person loved them. They wouldn’t do it! For some reason when our mind enters that space all the things that matter to us and the things that could help bring us around just can’t enter with us. Its like there’s a no entry sign at the door for all of it.” It’s a very sad truth, in that moment all we are thinking about is finding peace, wanting all the pain, hurt, anger, and everything else in between, to stop. The reality is the the love an existence of our loved ones mean EVERYTHING to us, but we just can’t see it or feel it. It’s like it’s in a different dimension that’s inaccessible to us.

Anyway. Some 7 hours after my initial call a recovery truck arrived. He drove me to my air bnb and even retrieved all my bags (which is a lot for a comp weekend!) and brought them into the house for me so I didn’t have to be in the rain. A truly lovely man. On the way to the air bnb he remarked how it was a nice change to recover a car complete with driver from those cliffs as often he’s collecting empty cars from those that have committed suicide there. All I could say was ‘huh really? That’s sad’. Not like I was going to admit it. And I didn’t admit it for nearly a month. The following day, after approximately 2 hours sleep, some stogy chips and a beer for dinner, and a banana for breakfast my dad and I headed off to my competition. Also worth noting, this was all off for my usual comp weekend routine. I have a big breakfast post weigh in, then dinner and lunch are nutritious meals, zero alcohol, 8 hours sleep and a gentle but fuelling breakfast with chicken dishes for food during the comp. So it was all off, as was I. I met some wonderful people at this comp, my coach Mark was there with his son Eli and it was an amazing atmosphere. No one knew what I’d tried to do the day before. I just got into my normal comp routine, won, cried again and headed home with my dad. Pretending to curse whatever the wind had thrown at my car that made me stop 🙄

This was my turning point. Not immediately, but it was the catalyst. I realised I was actually extremely far from ok and needed serious help. In hindsight, for the next month at least that I can remember, I was still a danger to myself and should have probably asked to check in somewhere. But I did ask the docs for help, who of course gave the usual spiel of there’s nothing wrong with you, it’s a chemical imbalance, we’ll do a prescription and get a metal health nurse to call. Which they did and eventually in august I got access to the online SilverCloud programme. During the period it took for this referral, I was punishing myself by denying myself food. As lockdown hit, I didn’t have much kit or motivation to train. When I did it was to take funny videos to post online, keeping up my ‘Theres nothing wrong’ facade. I then decided that I needed to reduce my calories in line with my reduced training. I lost 12kg in the first lockdown, dropping to 50kg, and a size 4. This was NOT healthy food restrictions and was probably closer to an eating disorder. I did however start getting into practicing mindfulness.

Looking back it’s a little amusing, I believed the docs when they said I had a chemical imbalance. As I started in mindfulness and guided meditation I thought I was starting to be in a really good place, though I’d often find some really horrible memories coming up in meditation. I was part of a peer mental health support group and even started doing videos on things I’d learned or was implementing to make each day, or even just each hour a little more manageable. I still practice mindfulness, and I meditate in a much safer way. But I was foolish to believe that I was doing well. I started silver cloud, and one of the exercises asked about past traumatic events etc. this really triggered me. I wrote in the section to the assessor that this had put me into a dark place with suicidal intentions again. I was told we’re here to deal with present issues, not the past.

I continued through the programme, they even had people call several times to check on my well being after I’d made comments about what this course was doing to me, but no actual help. More like just checking you’re still there, the assessor will address the issues further in her weekly report. Her weekly report was ‘glad to see you’ve checked in and managed to do this weeks exercises’. That was it, not a fucking assessment but a pat on the back. This was a total fail in helping someone in deep need of it.

A friend had recommended a private therapist called Lee. With no help coming my way from the doctors I reached out to set up an appointment. And this was the best decision I’ve ever made.

I didn’t have a fucking chemical imbalance, I had years of repressed trauma and pain that had been left to fester. Through the docs I had been assessed to have sever depression and anxiety, but Lee was the one to actually help me learn to manage these while also healing and working through what brought to that point on beachy head.

Im going to leave this one there. For two reasons, one – this has got very long. I wanted it to be authentic, I wanted to truth of my experience to finally be put into words. Second – Lee and my journey with her deserves its own post. She’s still my therapist, I currently see her twice a week. But someone who has honestly saved my life multiple times doesn’t deserve to be a foot note on a long ass blog.

Hail Mary

In my last post I discussed how unwell I’ve been feeling, and I realised the onset of it lines up with the start of the CGRP inhibitor trial I’ve been on. So I wrote a very lengthy email to my neurologist, with the help of Han 🖤. I detailed most of what I’ve been feeling, symptoms etc. I told her that the doctors had done a full blood work up and it was clear, so I asked if could it be the inhibitors causing these new issues. And if so, should I continue to the end of the trial.

Well her response has hit me pretty hard. She stated that clearly if I’m feeling worse I shouldn’t continue the trial, and that she’d send a letter to my neurosurgeon to arrange me an appointment.

I spoke about the fear I’ve been feeling at running out of time in this trial, running out of time before the implant became my only option. And in one email, containing just two sentences, my time ran out. I now have just one final, terrifying, Hail Mary left.

I’m a bag of emotions today. I was having nightmares all night about Bella – they’re always about Bella – and at 3.30am I gave up on trying to sleep as every time a new gut wrenching scene would unfold behind my eyes. Of course my dreams didn’t really have anything to do with Bella, my mind was just trying to highlight that I’m feeling anxious. I’m also feeling exhausted, scared, insecure and very vulnerable. I’m feeling everything. Too much in fact that I’m struggling to process it, to see what’s there and why. Because they’re all shouting over each other, too loud to be distinguishable.

I knew that this was coming and somehow that’s not at all comforting. If the Inhibitors are the cause of my increased suffering then, even if they were helping my head, they’re not a viable long term treatment option. I just thought I’d feel a bit happier seeing as this was the treatment I’d be pushing for. The one with the most hope, though also the one with the most risk – in theory. But I don’t feel happiness, in fact it’s quite sad that I have run out of options. There are no more fall backs. Which puts a lot of pressure on me wanting and needing this to work – which of course can create a whole heap of shit if something isn’t quite how I hoped it would be. Because there has been a lot of disappointment on this road.

But all I can do is trust the process and move forward to where this path is taking me. There’s still that one more option left to come and there’s every chance it could be the right one. I just need to have faith in this reroute and manifest the fuck out of that shit. Or with any luck I’ll find out the surgeon has come up with another option, Because having a back up tucked away would bring me a lot of relief from these feelings.

I’m scared.

I’ve had this deep rooted feeling, more like an impending doom, that somethings wrong with me. I tried to sit with the feeling, see if it was just because of my head and it wasn’t sitting right. They didn’t fit.

A few weeks ago I found a lump and eventually went to the docs last week, as it hadn’t changed, who referred me to the breast clinic. Over the weekend it suddenly changed and turned out to be a horrible infection. When the doctor said she was doing the referral I was like oh well, I knew there was something wrong with me. Obviously I was wrong.

Over the last year I’ve been chasing treatment after treatment, playing dartboard medicine to try and get my pain under control and get my life back. I’ve been afraid to settle and accept where I am. My mind told me that if I accepted where I am then I’d be stuck here forever. Like accepting where I am and still trialing treatments couldn’t go alongside each other.

The fact is I know I’m feeling off. I’m feeling a far deeper sense of exhaustion, permanently. My head is persistent and that good day I wrote about a while does appear to just be an anomaly. I’m getting cold chills, and I ache to the bone. I’m also struggling with my anxiety a lot more, particularly in social settings. It’s hard to know what is a symptom of my situation and what’s actually a symptom I need to check in on.

I got an email reminder to get me to place an order of the third dose of my current treatment. My third dose in due October 7th, and is the final jab in my 12 week trial. It means that I am just 5 and a half weeks away from the implant being my final treatment option. It’s a treatment I have far more hope in. And currently I’d say the CGRP inhibitors I’m trialing are a failure. Last week I even went to London to visit a cranial osteopath to see if he could help me.

He did help me. He said my head was a mess, that there was so much tension throughout my face, skull and neck. That he’d never seen anything like it. That through his hands my invisible illness was in fact visible. It took my friend highlighting this for me and I’m so grateful she did. But unfortunately the manipulation he performed has not helped me.

So my hat of tricks is now empty. Which means unless my final jab miraculously works, then I’m 5 and a half weeks time I’m left with one option. As I said, I have a lot more hope in the implant. But I’m starting to notice an additional feeling of fear along with the feeling of something wrong. Perhaps this feeling of impending doom is because I’m near the end of the road where a seriously invasive surgery is my last playing card. Perhaps the feeling of there being something wrong is because I’ve been filling my body with poison for years in treating this condition and more so over the last year. My feelings are probably perfectly normal of anyone faced with this decision, but I need to find a way to calm them down. I need to find a way to accept my current circumstances while also not giving up on my hope and fight for a treatment that will work for me and get me back on the road to rehab and recovery.

Too much of a good thing

I haven’t been writing recently, hence the lack of posts. It’s not that I don’t have anything to write about, I have lots. But sometimes I feel really detached and sometimes disassociate. I think it’s a coping mechanism to protect myself mentally, which of course can be a bad thing sometimes. But not always. I get overwhelmed so easily that I detach more, and recently there’s been a lot on, not all bad, but even the good can be overwhelming and so I detach.

First off, I was looking at recliners as my last post stated. And then one afternoon I got a knock at the door with a man telling me I’d bought a recliner and he was there to deliver it. I had not bought said recliner, and after a strange two Ronnie’s sketch on the doorstep her set up the chair. I called my mum to find out if she was the anonymous buyer, she wasn’t. So I tried my dad, checking whether he was in one of his many floral shirts as the man said it was a woman who bought it. It was dad. So I tried my friend Han, who was the anonymous purchaser along with Another friend, Ricky. So I sat crying in my chair, thankful that I had therapy in a few minutes.

I find it very difficult to accept help, even harder to ask for it. We all find it awkward at birthdays unwrapping gifts with all eyes on you but it’s something that gives me mad anxiety. And so the gifting of this chair totally overwhelmed me. I don’t know how to say thank you, I even offered to give them to money back. I’m truth I felt so thought of and seen. They saw my needs and helped in a way they were able to. And now I’m able to sit up, albeit reclined. But I’m upright, not led down permanently. And it’s SO comfortable. I’m so comfortable. Which means the world because being in constant pain with both my head and my joints means getting comfortable is near impossible, or at least it has been. So to Hannah and Ricky, thank you from the bottom of my heart.

Then my friend Darcy helped me too. I’ve been putting off selling my car. I need to because I need to clear my debts which I currently have no way of paying off with my current income. But my car is also the last bit of freedom I have. I’m not able to drive often but I’m so reliant on others, having the car there makes me feel a little less trapped or dependent. And of course I absolutely love it. I finally have it and took it to a car wash for a valet and then went to Darcy’s for coffee. And she offered to take photos of my car so I could sell it. This was something I felt a lot more comfortable accepting, and Darcy is an amazing photographer, so of course I accepted. Now my car is up for sale and I think it was just having her support and help really made it much easier for me to get on and advertise it. So Darcy, again from the bottom of my heart, thank you.

THEN I got an email to state I’d got tickets to see Live at the Apollo for their Christmas special. I applied in April, thinking I’d be better, and totally forgot. I didn’t think I’d be up for it, in fact I wasn’t. But as my Dad said, I’d be mad at myself for not trying. So on Wednesday I was in London. We had to leave at 8am and mornings are my absolute worst time and giggling about in a car does not help my head pain one bit. But I took my walking stick, which by the way helps me far more than I thought it would. I don’t walk very fast now because of my mobility and I’m a little wobbly, which again sets my head off. But it keeps me a lot more stable and in turn my head does not immediately scream in pain. So the stick was a winner! Anyway, we did it. I pushed through the drive, the incredible show, lunch and lots of walking and standing about. I’m still paying the price for it now, 4 days later. But I had a wonderful time with my parents and sister. While the tickets were free, it was a way for me to say thank you to my family for all they have and continue to do for me after the crappy last year. And again, Darcy and Hannah, thank you for helping out with Bella on the day! See, I’m surrounded by wonderful people and for that I’m always grateful.

Last weekend on The Friday evening I got a call from my brother asking me what my favourite crisps were and what tea I liked. He then announced he’d be down the next day for a surprise visit with his partner and kids. They arrived with fresh bread and meats from a Polish deli, which I cannot recommend visiting enough. They also gave me a huge box full of tea, body scrubs and butters, hand cream, face masks, choccy biscuits and fluffy socks. FYI, whenever I see my brother I cry. Every time without fail, and then when my 3 year old niece came in with this big box shouting ‘present’ at me I of course cried again. We had a wonderful day, eating, relaxing, exploring antique shops and Polish Deli’s. It was perfect and so good for my soul. So, again, thank you to them for making me feel special and full of joy.

I also had Bella at the vets for a check up on her eye after 3 emergency surgeries to save it in April. And got told it looked like she might need to have another emergency surgery after finding a growth on the eye. So we booked another check up for 3 weeks time where she would likely be sent for surgery. I’d been taking regular photos of her eye in that time and emailed a batch over to the vets for review. They got back to me quickly, which obviously made me panic, until I read it and saw that the appointment would be pushed back another month as the growth didn’t appear to be growing rapidly. So bad news followed by incredibly relieving news!

You see there’s been a lot on. It’s been overwhelming, lovely, joyous and exhausting. In no particular order. But I feel it’s all been very full on, in a good way, but it’s been in a way that I’ve felt very detached for the last few weeks. I still do, but I woke today and just felt like writing about that. Writing about the good and explaining my absence. Writing about it has just reinforced how lucky and grateful I am to be surrounded by such incredible friends and family. Each of whom play such an important role in my life and bring me joy in every interaction.