Category: Uncategorized

I’ve just finished my therapy for the week with Lee and several things came up. I will probably have several journal entries to share once my fingers and my mind are finished as there as several things I want to write on to see what comes up.

First is that I am harming my self. I need to recognise this for what it is and be honest with myself about it. For many, when they read or hear that someone is harming themselves what they picture is likely to be cutting my wrists or legs, a very common form of self-harming. But there are many other ways this can manifest and for me this is picking. I have picked, scratched and chews the skin on my fingers to the point of bleeding and infection and have been left with very sore areas, with red raw skin and scabs. I also scratch and pick at my face, my scalp and the back of my shoulders, and my upper arms. I, through discussing this with Lee, is likely a result of frustration, anger and probably sadness.

Of course this confused me because as you’ve read I have many good things happening, not necessarily things i imagined or hoped would happen, but ultimately they are positive. Like my Debt Relief Order (DRO) for one – I’d never in a million years wish to have filed for this insolvency service to clear my debts, but unfortunately the condition of my health left me unable to continue handling my debts as I was when I had a steady income. It’s not the route I would have wanted to take, but ultimately, it has removed the burden of stress from my shoulders, a burden I do not have the capacity to bare. So it’s a good thing.

Yet here I am picking at myself, or snacking unnecessarily to try and distract from the picking. The reality is that while these good things are happening, I still should not be in this position. I often find myself wishing I had cancer, nothing fatal, maybe a stage 2 cancer. Because at least people have heard of cancer, at least there are many treatment options, at least there is funding for more treatment options to be researched. At least when someone finds out you have cancer you don’t then have to explain what it is to them or justify why it has brought your life to a standstill. 3 times this week alone I have had to explain my condition to medically trained professionals, I’ve had to explain in detail what has happened to my since the Pfizer vaccine to justify why I am on pregabalin and why they need to action my prescription request. I’ve had to explain why my mental health is suffering, and to the extent my suicidal thoughts go, in order to answer their question on why my antidepressant dose was increased despite the fact that it increases the high effect from the pregabalin. I’ve had to explain, again in fine detail, why a ‘headache’ means that I spend 80% of my time led in bed in a dark room, unable to work, walk Bella regularly and how some days its so bad I can’t do anything more than nothing. How the exhaustion from this constant pain and the impact not training has had on my mobility means that some days I can barely get from my bed to the toilet, or that I avoid going downstairs when I desperately need a drink. Instead, I lay there, dehydrated, busting for a wee, and leaving it until the last possibly minute to go.

I waste the majority of every phone call or appointment with a doctor running through all of this just to get the medication I so desperately rely on to bring my pain down to an 8/10. Hardly seems worth the hassle, right? Especially when you realise that I have to inform a medically trained professional on something they know nothing about, and then trust them to make the right decision on my ongoing care or medication. Knowing that the only knowledge they have is what I’ve jsut relayed to them.

This is a lot of my frustration – that I have such a rare condition, a condition that’s also very rarely seen this severe and debilitating. A condition that is severely under-researched, under-funded and unheard of by most. I started sharing my journals because I wanted to help others – and I know I have helped some. I’ve helped my loved ones understand me and my situation better, I’ve helped some with mental health struggles feel less alone, I’ve helped those with my condition who have shared some of my posts with their loved ones so that they can be better understood. But what I have failed to do is shed light on this disease, to make it seen and heard, to make it relevant and to find help and funding to find better treatment or to find the cause so that someone can find the cure. Yes, I have played Russian roulette with treatment options, but they’re treatment options that those responsible for my healthcare didn’t believe would help me in the first place. Yet, I felt forced into trying them, because unless I did the surgeon wouldn’t consider surgery. Imagine being told ‘we don’t use this to treat Hemicrania Continua because is very rarely works’, right before having 31 injections around your face, head and neck – starting with one right between the eyes.

So yes, I am grateful that me and my small time blog has helped some people, but its not enough. The power of social media is incredible and immense, it can be hugely damaging too, but it takes a lot of time, energy and funding to truly have your voice heard – especially when you’re sharing a blog from just one person who’s suffering. Its easier to gain traction and interest when you’re shouting about something that has impacted most people. But unless more people like me write what its truly like to have Hemicrania Continua, and the sufferings, challenges and allowances that come with such a condition, then all people think is ‘it’s just a headache’. And then they suggest you take more paracetamol. I’m grateful that those who surround me understand me and my condition so well that I don’t have to worry about any of these frustrations with them. But I don’t know that that is enough for me, because I want to achieve more from my suffering and I need somewhere to channel this frustration.

‘It never rains, but it pours.’

It’s an old saying, usually heard in a negative context when the universe appears to be conspiring against you. Today it’s in a positive context.

I know I posted a blog a mere few hours ago, but the universe have continued to bring things back. The 3rd thing on my wish list of returns – an appointment with my neurosurgeon. The post came through and I instantly saw the dominoes menu on the floor. Obviously I did my usual and picked it up to check the deals on a fast food place I never frequent, and put it in the recycling. Going back through the hall, I had t spotted letters hanging out the letter box. A brown one which can never be good. But it was good, it was finally an appointment on 8th feb at Southmead. I honestly couldn’t be happier.

I’m also overwhelmed, it’s a lot to happen in just two days, but it’s a good overwhelmed. All I need to do now is trust that my surgeon will agree to proceed with the implant as I have tried all non surgical methods available, as he requested.

Another positive for today is that having done the drive to and from Bristol yesterday I predicted today would be a little rough. But as it happens, today is just an average day. My pain is at its usual 8/10, no shocks of pain, not a significant droopy eye. Just a big standard normal day. I couldn’t have predicted it, and it’s a welcome surprise. Especially given I have to wash my hair!

I said yesterday I’d done all I can do and now I had to trust the universe to bring things back to me. That trust turns out to have been well placed.

Yesterday at the vets, they checked out Bellas eye and the cyst that has appeared. The cyst has grown down and now it would be too risky to operate on it. As it’s benign and out of her line of sight we’re going to leave it be. It could mean that at some stage the eye will be compromised, but for now she gets to keep it in all its pale blue glory.

Today, just two days after my DRO application was submitted I received an email. My application has been approved and in just 12 months my debts will be gone. I will have a clean slate, and hopefully I will be on my road to recovery by this point too.

My therapist set me an exercise before new year, to put together a visualisation board. I’ve started it, but it’s in my head in and the notes in my phone rather that physical. Of course I started with having my own home – I can’t help but think how liberating it would be to have my own space, or my own design, as a young woman finding her place in the world. Next up is my next steps. I’ve spoken before how I might not go back to engineering. Truth is the construction industry comes with a significant stress load, even when you’re on time you’re still up against it. I loved what I did, but it was also restrictive in terms of being stuck at a desk everyday or not have the time or money to travel. It also didn’t fulfill my purpose of helping others. Instead I’m considering going to university to study therapeutic psychology. It covers the area of psychology I’m most interested in and allows me to choose a career in this field that includes being self employed. This allows me some freedom to create a work-life balance that suited me. Because what I want from life, when I begin to be, is to be a stress free as possible, with the financial freedom to do the things I want to. My bucket list items of places to travel, adventures to do and adrenaline to seek. I’ve spent 29 years denying myself all of these due to believing I didn’t have the time or could afford or justify the cost – I won’t deny myself like that anymore.

Now, I will trust to universe to keep bringing back to me. To allow me to begin to be again.

Many things will be happening this year for me, many things this week alone. I like to try and balance my time, ration my energy. But this is one of those weeks where I just don’t foresee the right balance or rationing. Instead I see the following week being a right-off. This bums me out because it means, aside from more pain, that I’ll be fairly unlikely to be up to doing a lot else other than resting. But it’s just a week.

Today I have to drive myself and shells to Bristol to see the specialists that have been dealing with her eye. There’s a chance I might be coming back alone and she’ll be having a sleep over after more surgery. Normally my dad drives me there and back for her check ups and surgeries, but as he’s bogged down with work I’m going to have to drive myself. Unfortunately, the drive alone will bring a heavy consequence, let alone the emotional weight if she ends up in surgery. But it cannot be avoided, and it’s a consequence I will always be willing to pay.

Thursday my dad has booked us to go to Autosport International at the NEC. Some of you will have read the cost of me going to a car show late last year. It was a lot, not just the endless walking, but the early wake, the movement or the long car ride there and back, and the late night. It’ll be a lot, because for me even just sitting upright is a cost. But, I seldom do these things, and it’s not often I get to spend time with my dad outside our near daily coffees. It’s something we both enjoy, and something under normal circumstances I’d be excited to do. But it comes in a week that just happens to already be busy for me.

Friday, following therapy, I have a physio assessment. This is following my referral requesting hydrotherapy. I’m really looking forward to this, not in an excited ‘this is gonna be so much fun’ way, but in a my joint paint is nearly equal to my head pain and I could really do with some help with that kind of way. My hands, back and feet are the biggest problem for me. My hands hurt from my wrist to the tips of my fingers, and at the moment I have a job to write with a pen or do my paint by numbers. I have the same kind of issue in my feet, but thankfully I’ve no reason to write or paint with those. The negative is the worse my joints are the more I click, not deliberately either, though I do click to relieve the pressure I feel. This also includes my jaw too, which is also impacted by my HC pain. All clicking and hurting. It’s like being an old lady, the trouble is that I have to be extra vigilant to ensure nothing pops out of place or dislocates.

Anyway, fast forward to Sunday, and I’ll be driving my mum and I to Wolverhampton to visit my brother and his family. Unfortunately, due to her eyesight and the likelihood of driving in the dark I’ll have to be the driver. I’m also a very bad passenger, particularly with my mum. I’m really looking forward to this and am so excited to see their new home and their kids. I feel nothing but love when I’m with them, and much like when I was a kid and my brother came to stay, I still think he’s the cool big brother. I just hope that between the car show and physio, that I’ll be able to recover enough to a, safely drive, and b, enjoy the day!

Obviously I also have my therapy sessions scheduled. Yesterday my DRO application was submitted, so I’m also a bundle of anxiety waiting for the decision on that. But I’ve done all I can, now it’s up to the universe to bring it back to me.

As I say, a busy week my my standards, very quiet by a normal persons. But it’s just a week, and it’s a mix of things I have to do, things I need to do, things I want to do and things I just can’t control. So while it’s too much, it’s well balanced.

I’m not sure why I wrote this one, probably because I can’t stop thinking about how much I have to do. But I think I might start writing a little more about things I do to cope and manage, not just my pain, but my depression and anxiety, or even my joints. I have certain things in place, and very practices, that I’ve adopted in order to help me cope better. The sorts of little things that might help others.

Hello, and welcome to a new year.

I wanted to share a few bright things to start this year on a good foot. First off – my NYE. It was my favourite to date. I spent 80% of December stuck in bed, so I was determined to get around to see my friends, even if, like Cinderella, I needed to get myself home before midnight. It started at Hannah’s house. Her home was filled with her family, partner, and a couple of friends. The whole house was just bursting with joy and love and I felt every ounce of it. Cooking together, laughing, playing games, and checking in on each other’s Christmas celebrations. It was beautiful to be a part of it. Then I popped a few doors up to see my goddaughter Amy and her mum, Laura, who’s a very old friend of mine. It was brief but heart warming as I hadn’t been able to see them since mid December. Then I jetted off to Darcy’s, where her and her partner had a few friends round to see in the new year. I saw some old friends and we laughed, and played around and ate. The lads went off to watch lad shit on YouTube and us ladies just basked in each other’s company, full of laughter and even a tequila shot. It was another home filled with love and joy and, again, I felt every part of it. I left a little before 12, later than I thought I’d last, and I got to spend the big moment with my mum. The woman who has been my career, friend and supported for these last 18 months. I’ve never felt so loved, and yet it was so simple.

Since then, I’ve been blowing up my neurosurgeon’s secretaries phone until she finally answered this week. As a result I’m now 2nd place on his year long wait list and they’re booking 6 weeks in advance. So it won’t be long before I get an appointment letter, and should be seeing him in just a few months. Light at the end of this dark and painful tunnel. Finally a step closer to getting the implant.

In the background over the last month I’ve been trying to deal with my debts. December finally saw a decision made on my health assessment for my UC and ESA, which means my income finally covers my outgoings. As a result, I was able to get back in touch with StepChange to get their help. If you ever find yourself drowning or just overwhelmed by your debts, I truly cannot recommend this charity enough. Every person I’ve spoken to has been lovely and kind, understanding and nonjudgmental. So behind the scenes I’ve been working with them and whatever route I took my credit score would be damaged for the next 6 years. However, not dealing with it would also damage my score for 6 years and land me in court. So we went for option 3, to damage my credit score for 6 months and be debt free in 1. I opted to apply for a DRO, which is insolvency. If my financial situation hasn’t significantly improved in 12 months it’s all written off. The reality is that I’m still waiting for a consult, then I’ll be waiting for the actual surgery, then going through rehab. This isn’t a less than 12 month process. It’s been a bitter pill to swallow – that this is where my finances are at because I got a vaccine, but that’s not what this post is about. But it’s still hard to accept that I’m going insolvent, and a decision will be made on that in the next 10 days. It’s hard to accept any of what’s going on with me because of a vaccine, but I still have to face up to it all. And this, while taboo and something someone might judge me for, is a huge fucking relief. That when I’m better I might also get to restart life with a clean slate is enough to make a girl cry.

I’m glad I get to come here, with my first blog of the year and share good things and good energy. That’s going to be my focus this year, is taking the fucking wins. Jay Shetty put a post out the other day with an idea that each week he will write something good that’s happened on a bit of paper and put it in a jar. Then next NYE he’s going to open the jar and read them all. And I’m going to follow the trend, and each week I will fill my jar with something great that has happened for me. I might even write everything great that’s happened that week. And I started by writing about my NYE.

So here we are, another year coming to a close. We enter the year of my 30th, one of my best friends will become a mother and the other will become a wife. The year I should be having a nerve stimulator device implanted along with a pacemaker. A year that will hopefully see the rehabilitation of my body so I can restart a life beyond mere existence.

2022 wasn’t my year. In fact I’d love to scrub it from my existence, but alas such things are not possible. It was arguably the toughest year of my life to date. This situation started June 2021, so I only saw half that year go to waste. But 2022 was a whole year of my life wasted. It’s hard to think of it any other way. It was a year of suffering and sorrow. A year that saw those I love grow and flourish, while I watched longingly through the window. I wanted so much more from this year. In fact exactly a year ago I vowed that in 2022 I would heal and find myself again. I continue to make that vow for as long as it takes to become a reality for me.

But while as a whole 2022 wasn’t my year, it was a year I survived when I really didn’t think I would or could. A year with so many moments that I didn’t think I could continue, moments I wished I wouldn’t see tomorrow when I went I sleep. And so it signals a year that I fought through every one of those moments, 365 days worth of those moments. This year tested my strength in more ways than I could imagine or explain, and I passed every test. But not alone. I survived these moments because of what I surround myself with. I surround myself with love and kindness, patience and understanding. Beautiful traits of all those who surround me, who support me and cheer me on. Not to mention my trusty sidekick, my ginger shadow, Bella. My bug. My soulmate.

I know what I wish for myself from 2023 and I wish nothing but wonder and love for those I care so deeply about. I wish that for everyone else too, especially those who have supported me, checked in on me, shared their time with me and those who are reading this now. I hope your 2022 was worth remembering and holding on to, and I hope 2023 is even greater in every way.

Happy new year with love and light 🤍

I am so hard on myself sometimes. I berate myself for the thoughts and feelings I have, as if they are entirely unjustified. I pick at myself for the things I can’t do, for how I now look, for how little I achieve.

I was just, literally not even 2 minutes ago, watching tv and had a sudden thought. I am so fucking strong. Obviously not physically. See there I go with the nit picking again. But the fucking strength I have shown these last 18 months are incredible and, if I’m honest, inspiring. At least to myself. I fight through so much just to get from morning to evening every day. I fight the pain from this truly torturous disease in my head and from the condition I face with my joints. I’m in a permanent state of grief – grief for who I once was, a life I had and the things I could achieve. Grief for the physical strength I once had, the medals I came home with. For this bright and powerful young woman who thought she had all the time in world and the belief that the world was her oyster. A woman who had the strength to seek help and battled through therapy after an attempted suicide. To break through the very core of her soul and start to rebuild her true self. I battle the suicidal thoughts and somehow make through one day at a time. All the while, despite my body being broken and damaged in so many ways, it still fights to carry me to tomorrow. It still fights to endure the toxic medication I throw into it morning, noon and night.

It was just a sudden realisation that I am still strong and powerful. That one day the world will be my oyster once more and I will have the time to spread my wings. When that day comes I will have one hell of a story to tell – the story of a woman who despite all odds survived a time in her life that could have broken even the strongest of hearts, minds and wills. That I am all of these versions of me – past, present and future – my power and strength is just channelled differently in the present. It’s channeled in a way that will ensure my survival and rebuild. My future self will also hopefully be more humble than this post makes me sound, but I figure I dig myself out enough that I deserve to blow my trumpet once in a while.

Of course this strength doesn’t just come from me. The strength given to me by all those around me, through their love, support and guidance is probably just as responsible for my resilience as my inner strength. Thank you. Any and all of you who have played a part, even without realising. Even the lady in one stop who asked if I was poorly and then wished me well in the most genuine manner.

I feel I write about my overall feeling and not about what’s contributes to it, aside from my situation. I wasn’t even sure I wanted to write again, but I spoke to Hannah this evening after she read my blog. I’ve been honest with those around me about the fact I’m struggling but not to the extent. It felt so good to be fully honest, in an open space where there’s never been so much as an ounce of judgement.

It’s not that I don’t want to be here anymore, it’s that I don’t want to be in this here. I don’t want the here that has all this pain, this exhaustion and hurt. I wish so much that I was free to live again, to experience life and all its beauty. To go to work, to make any arrangements I want without a second thought about there being any consequences. I want to travel and love, to explore new places with Bella every day. To run along the beach with her or have a cocktail night with my friends. To love and trust my body again.

With having no idea when I’ll be seeing the surgeon for a consult and no sign of my pain clinic or hydrotherapy referrals it means I’ve lost a timeline. Before it would be that I’d just have to make it to ‘this’ date for that appointment, then the next date and so on. Now all I have is ‘just two more days until I see’ whichever friend I’ve arranged to see, or whatever is in the diary to do. These are my new life lines, my new goal survival dates. Putting that hope onto social events puts so much pressure on them, that when they get cancelled I’m not just a bit bummed. I’m fucking devastated. Social events get rearranged or cancelled, it happens. Work shifts change, something comes up that needs to take priority, people get ill. It happens, so I try not to put too much pressure on the event to be my lifeline. But I do, I don’t know how to control that. It also means that I drive or continue to do social events that I myself am not up to if I’m having a particularly bad day.

A standard day in my life looks like this – wake up 7-8am, pain 8/10, let Bella out, do Bellas meds, do Bellas breakfast, make coffee, take my meds, return to bed. I don’t return to sleep, I lie in a dark room with my kindle after 5-10 minutes of stretches. Get up again around 11-12, make a tea and head back to bed. (On a bad day I will also take extra meds at this point. 3-4 days a week my dad and I will meet either at mine or his for coffee or lunch and 1 day a week walk Bella). Anyway…back to bed to read kindle, I try to paint but usually only manage this for max 2 hours a day or two a week. Then read again until 4.30/5 when my mum finishes work. Then hear about her day, switch off from too much detailed info, then sort dinner. Most days this is mums doing, at least once a week I sort dinner, usually something simple to manage, ie pans and woks and not the oven. Then we eat and tidy up. I take more meds. We watch 2 episodes of whatever series on the tv until 9pm. Let Bella out, give Bella her meds, tuck Bella into bed, tell her ‘night Bells, I love you’ and then get into bed. Some nights here I add in stretches, on the others I meditate. Lather, rinse, repeat.

Can you, just for a moment, imagine how fucking boring that is for just one day. Let alone nearly every day. Imagine that being the most you are capable of each day without risking more pain.

Then you add in some seasoning – how each day climbing or going down the stairs seems to get harder. The stairs get steeper or higher. My knees feel like they want to pop out at each riser. Then the pressure sores I get from being led in bed so long (but this makes a huge difference to my pain), so have to ensure I regularly flip over. Flipping over sounds easy, but then you add in the intense back pain. I badly injured my back lift a few years back and this pain has returned and makes flipping a significantly more arduous task. It also means that I walk at the same pace as a snail. If I take too big a step of go off balance this causes twinges in my back. But like most joint conditions some days are better than others, so catch me on a rare good day and it looks like I’m walking normally. Also as a result of my joint issues occasionally I have to pop a shoulder back when I wake up in the morning. These joint issues were resolved by weight training, it’s why I started it. After being told I’d probably be in a wheelchair by 40 I decided to train my muscles to support my joints. Now I’ve seen a lot of muscle waste I seem to be back on that trajectory. Then you add in the movements that cause a surge in my head pain. This includes the movement of my head from walking, bending down to pick up something I’ve dropped. This has to be done as a squat while holding something for support so I’m not bending forwards. The need to have my head supported when led or sat down, or again see a surge in pain. This is a huge part of why I end up with a 2 hour time limit on social events. Then the motor skills affected by my meds that can make using a knife a hazard, particularly if something requires chopped onions or other things cut small or small items cut. It also meant that I’ve had to repeatedly practice handwriting exercises because I couldn’t control a pen any better than a 5y/o. Then the fact that my pain and my meds mean my mental processing speed is reduced, I don’t have the mental agility to do my job even if I could concentrate through the pain. I mix words, stumble over sentences and can often take me two or three times to get a sentence out.

All these things have become a part of my daily life. Allowances I make that I don’t even have to think about them anymore, in fact I’ve probably missed a fair amount of what has become routine or habit.

I think this is what I struggle with when discussing my health, is that it’s not just a bad headache. These things often aren’t seen and I can confirm I rarely discuss them. All of this is why I struggle to want to be in this here. Because this here is fucking hard work whilst it’s also doing absolutely fuck all. I’m not certain I’ve ever truly explained that except during health assessments or appointment. But how could anyone want to have the above as their groundhog day with no known end date? What would you do to cope with that?

Anyway I want to end this entry with a win I didn’t share last time. Aside from clearing my room and binning a whole bunch of crap, it’s also been 4 days since my last cigarette.

Today is a tough day. I really pushed myself this weekend. I spent Friday, Saturday and Sunday clearing my room. It’s been a mess for a while, and I have serious issues when it comes to throwing useless things out. So it was a huge process – first clearing everything off the floor and sorting through it. Then moving or removing all furniture so every inch of my carpet could be cleaned and hoovered. Ever last spec of dust and dog hair removed. Then it was the work surfaces, and the dreaded drawers. By Sunday I was in agony, and it was drawer day. Saturday I took extra meds and worked high but it’s not a vibe. So I went with the pain Sunday which made me grouchy and ruthless and mostly just binned everything bar hair and make up items. My room has felt so claustrophobic for so long and just hasn’t brought me peace. Now it’s my sanctuary again, it’s clear and clean and I can burn all candles and it not feel like I’m just spraying febreeze over dog shit.

But now I’m in agony. I can’t get a grip on my pain and I’m trying to force myself to just stay still and rest. But my mind makes this a much harder process. My plans for this evening aren’t able to go ahead, and because of my pain this isn’t a bad thing. But mentally it would have been good for me. I have plans to see people over the next two days which I’m really looking forward to.m, but for today I find myself in another Groundhog Day. Just another day, in a lot of pain, stuck alone in bed. I tried doing some painting for distraction but I’m just not physically up to that energy output.

I don’t want to feel like this anymore. I either don’t want this pain or I wish I was detached again. That’s my main issue, I complained about being so detached but suddenly I’m not. Which means I’m faced with my reality and it’s not a very good one. In fact I’d say it’s not a reality anyone would have should choose. But I don’t get the choice. I’m trapped here and I so wish that I wasn’t anymore.

I really thought trying to get my shit sorted this weekend would help me somewhat. To have a sanctuary that didn’t bring me negative energy, but it’s me. I’m the negative energy. I am however truly thankful that I accepted my therapists offer of an extra session per week. Because it means I have therapy tomorrow, and I couldn’t think of anything better for me right now.

I’ve also not shared my journals much. I’m aware how dark they are at the moment, they’re as negative as my mind and feelings. And I don’t always want to put out negative energy. You get back what you put out in life. But people also feed off what you put out. I always wanted to share my blog in the hopes that one day it may help someone else. But when all I have to share is more of my suicidal ideations it concerns me for others in my place. I want to be able to give those people hope that while it’s shitty and tough, it’s possible to get through it. But I’m not going to sit here and try and force that hope on others when I don’t have it right now. Im truly not certain about how I’ve come this far, and I’m even more uncertain about how I continue. That’s not the hope or help I wanted to bring, but then I also promised it would be the truth.

Maybe in another 18 months my story might be complete, I might be on my journey through recovery and this blog will be filled with ‘told you I’d make it’ posts. Like a nice round off to the journey. A beginning, a really tumultuous middle and a wonderful end. But right now to read my blog we’re in a trough and that’s not an enjoyable experience for the readers I currently have. I mean I don’t have wild numbers of readers, but they are spread all across the globe. But I also use my blog as a way of allowing those close to me a true view of where I am without having to get all emotional trying to tell them in person.

I truly value writing. I still find it cathartic but I’m just not sure this is the energy I want to put into the world right now. Maybe I’ll continue posting or I might take myself on a sabbatical for a little while.

Therapy for the week is done and we’ve put together a checklist of things I need to do. Shock horror it’s a list of my kryptonite – asking for help from others. It started with accepting help from my therapist in the form of an additional session added in each week.

The truth is while I’ve written I’m in a darker place at the moment, that darker place is suicidal in places. There is only so much suffering one person can endure, and enduring it without accepting or asking for help makes that suffering a much heavier weight to bare.

They’re a two parts to me. Chloe 1 who is suffering alone in a dark place, with dark and intrusive thoughts, full of resentment towards others for moving forward with their lives. There there’s Chloe 2. She’s full of unconditional love and acceptance for everyone. She’s light and has hope that something will happen to fix my pain. The trouble is they aren’t talking to each other. Chloe 1 is dominant and shouting at the top of her voice, drowning out the efforts from Chloe 2.

So my checklist is to try and tune more into the darker thoughts and feelings and then slowing space for Chloe 2, my bright soul, so step in and ease away some of that darkness. I must also seek help from others.

I’ve spoken about how I’m doing too much to try and not be say still but I haven’t the energy to be able to maintain that or cope with the subsequent pain increases. So I need to see people little and often, bin off my 2 hour rule and fit in even just 10-30 minutes with people. Thereby being able to maintain seeing someone everyday but in a way that doesn’t drain me or inflict further pain on myself. Even just someone to go for a 15 minute walk with Bella and I to embrace the beauty of nature – to remind me the world is still full of wonder.

Then I need to ask help with putting up the Christmas tree, because believe it or not that is actually too much for me to do alone. I also need help with my room. It’s the place I spent 80% of my time. It’s a bit messy, it’s cluttered and it’s just become a negative space for me. I need to switch that so it’s more of a sanctuary again. A tidy clean space, smelling of one of my many beautiful candles. I need to remove the clutter and make this space feel less claustrophobic. I need to breathe life into my surroundings.

Then I need to call the lovely doctor I had the other week – or at least try and get an appointment. I need something in place now. I need hope and something to look forward to, something that will help move me forward and aid my rehabilitation. Something to get me moving and heal the damage being done to my body. I also want to seek out a support group, some people who are also suffering with intense pain that I can share a moment with weekly. I have Kathryn, a friend I made from the Hemicrania support group on Facebook. It’s incredible how similar we are and how are conditions are, I truly believe we’d actually be friends even had we not connected over this horrendous disease we share. I just wished we lived closer together!

I don’t do well with asking or accepting help. Even now, 18 months later I feel terrible that my mum does so much for me. She’s sees it as she is helpless, she’s doing nothing more than she’d be doing for herself if I wasn’t living here. As a mother she feels helpless, seeing her child in such pain and feeling powerless to do a damn thing to take it away. But what my mum sees as not helping to me it’s everything. She feeds me, cleans for us both and even helps me wash my hair when I can’t. She’s going to help me with my room on Friday. She does so much. As does my dad in an entirely different way, he sees me every day just to break my day up. To ensure that I’m not alone. He shares time with me and gives me a safe space to speak openly about how I feel, and vice versa. He gets me out the house for some days out or has lunch with me. They do more than I could ever ask of them and my mind still tells me it’s too much to accept gracefully.

And there lies my problem – I don’t know how to even accept it. Yet now I have to ask for it. I’ve spent 18 months shouting for help from doctors and specialists because I don’t deserve to be where I am. I don’t deserve this pain, I don’t deserve this situation and therefore I have had to fight for every ounce of help I’ve received from healthcare. But I truly wonder why I have the fight in me to demand of help from specialists and yet no fight or conviction to ask for help from those around me. Those who often ask how they can help and I brush them off. Why do I insist that I must do this journey with no help when I already have to do it alone?