Month: December 2022

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?

I wrote yesterday a little about how I’m alone in my journey. Today I feel I want to write a little more on that. I don’t want what I say to hurt others, particularly the feelings of those I care most deeply about or who have shown unwavering support, but I fear that it might have already, or might do so. I don’t mean for it to happen, I know I’m in a darker place and it’s not intentional, but I promised I’d be honest in my journal and honest with myself and others.

I feel, or rather I know, there’s a part of me that in envious and perhaps sometimes resentful of those around me. I want to make it absolutely clear that I would never and will never wish my situation or my condition on any other person – whether I know them or not, whether they are deemed the worst of human kind, I just wouldn’t. The resentment and anger is also my responsibility and I do not wish for anyone to fill their life because I’m jealous. I’m the biggest cheerleader for those around me and these feelings I get do not change that. I will always wish for the best for my people and push them to be their best selves. I’ve said before how grateful I am for the support I receive, for the love and patience shown to me. That it is what keeps me fighting, keeps me putting one foot in front of the other. And that is true, because without that, without them, and without Bella, I honestly don’t think I’d have anything to keep me going – anything to make me want to keep going. I know that’s heavy, but it’s my truth.

That being said, my journey is my own. A path only I can walk, others can give me a gentle shove in the back to keep me moving forward, but they cannot walk it with me. They have their own path to walk down, for some it’s a path into growing a family, others a path that will lead them down an aisle in a beautiful white gown. Everyone’s path is different and no one else can walk it – it’s exclusively theirs. I think that’s where my resentment and envy lies. What I see is people giving me support and love, brief periods of time spent together, drinking coffee or sharing a meal. Then we go back to our respective paths. When that happens what I see is them moving forward, growing and blossoming on their path. Others get to go to work, share homes with their partners, go out for dinner and drinks. They have a beautiful future ahead of them and they get to plan and prepare for it. Their path to me is bright and beautiful. I on the other hand, upon returning to my path, am faced with a blank darkness. No plans, no future.

I think what I’m saying is they get to keep moving forward. That’s not to dismiss anything other people are going through. I believe the saying ‘walk a mile in my shoes’ because no path is easy. An easy path would be terrible for anyone, without struggles and stresses there is no growth. But I’m jealous that they get to go to work, I’m jealous they get to share their journey with a partner, walk their dog and enjoy life on a whim. They can plan holidays, parties, family gatherings and futures. As I said yesterday, I’m stuck in no man’s land with no idea when to expect appointments to discuss next steps in my treatment. I don’t get to continue with life while I wait for these, because my condition prevents that. I don’t get to go to work and moan that it’s only Monday anymore.

I keep finding myself thinking about New Year’s Eve, and I go to pick up my phone and find out what everyone’s plans are. But then I think I can barely keep my eyes open after 9pm and when I drink it makes me high. It sounds silly, but I’d love to have a few tequila shots and let my hair down. But then the fear of how that might react with my pain or my medication stops me. Then I think fuck it, it’s one night a year, I deserve to let my hair down and party a little! But what if I get a hangover? What if there’s a bad reaction to my medication? What if the pain after is unbearable? What if I fall asleep? What if no one is interested in a half-arsed, might fall asleep, might end up in a state, New Year’s Eve party?

I know I won’t find out unless I ask. I also know that I don’t know what tomorrow looks like, so making future plans is difficult because I hate nothing more than the guilt of bailing on someone. I do have plans, a birthday dinner in a few weeks. Honestly I’m beyond excited for it. A night with the girls, out the house, celebrating another year of knowing a wonderful woman and all her achievements. I also know that I have to plan on the defensive, that I might have to take extra meds if it’s a bad day in order to make it. That doing so means I shouldn’t risk having a drink. That the days after will likely be uncomfortable at best. This is a worthy consequence, and so I’m just excited. The rest is background noise. But I wish that background noise wasn’t a part of my life or thought process anymore.

I’m a little fed up I guess. I’m fed up of only being able to read, fed up of this house, my room I have no energy to tidy and having nothing else to fill my time that doesn’t come with a consequence. I’m bored of being bored and I’m fed up of my time mostly being spent waiting for someone to be free to spend a few hours with me. I wish more than anything I could just bundle Bella into the car and drive somewhere new and explore for a whole day. Yet I know most days I can’t even walk in the fields opposite the house. I feel the best years of my life are being wasted and I’m powerless to change it.

I’m in a bit of a rut at the moment. I can’t seem to find the healthy balance my body and soul needs. I don’t think I’ve been able to find a ‘balance’ since this all started but I’m struggling now more than ever.

I’ve said in a recent post that I’m finding myself more aware of my feelings again, particularly loneliness. Loneliness is a very complex emotion. See I’m not alone, I have support in every corner, and for that I’ll always be grateful. But despite the support this is my battle, and I truly feel like I’m walking into it alone – because for all the support I have, no one can actually help me. And I see how devastating that it for those around me, I see how much it hurts them to see my pain and be powerless to take it away. Nevertheless, their love really is what’s giving me the power to keep moving forward in the journey. Alone, but powered by the love, empathy and strength of everyone who’s supporting me.

I’ve been trying to battle the loneliness, or more like distract myself from it, by making sure each day I do something or see someone outside of my home. The trouble with that is it means I’m driving a lot more, which is not something I should be doing. I’m not dangerous, I’m not driving high, but I’m aware that my pain can often be distracting and driving without full concentration isn’t advised. So then I have to put so much more energy and focus into ensuring the road has my full attention, which obviously leads to more pain and exhaustion. It’s silly because driving for me is so relaxing and more of a hobby than a convenient method of commuting. But that was in my old life.

Anyway, excess driving aside, I’m struggling to stop and rest, particularly if I’m home alone. So I’ve been out more, doing more, seeing more people, trying to do some food shopping where I can. And despite my pain being a 10/10 for over a week now I just can’t fucking stop. When I try it’s not resting, I’m led there feeling my whole body and mind trying to fight to stay away from the darker places of my mind. So I’m not resting, it’s purely me restlessly led down. Then I give in, get up and force myself to leave the house and do something.

I’m so consciously aware of how easy it is for me to slip into a darker place, a deeper state of depression, and that scares the fucking shit out of me, because I know how hard it is to come back from. I also know how little fight I feel like I have left in me to do so. So I get up and try to stop that slip from happening. It’s a strange place to be in – knowing that I am inflicting more pain on myself by keeping busy and deepening my state of exhaustion. But I just can’t afford to slip.

It’s also strange that there isn’t anything in particular that is on my mind. My therapy is down to 1 session a week, because I don’t really have a lot to talk about. I enter my sessions not knowing how we’re going to fill the hour, but we do. We always have done, even if it’s just chewing the fat or meditating. But it’s difficult not having anything to divulge to help get me further away from this darker place I’m fighting to avoid. Because everything to say has been said. It’s just the result of my entire situation – my pain, my suffering, my finances, my boredom and loneliness. It’s all been said. And there’s absolutely fuck all I can do about it all.

My neurologist took a month to send a letter to my neurosurgeon requesting a consultation for me. The letter stated that my last two treatments didn’t impact my pain at all and that I’d had ‘partial positive response’ to Indomethacin since I saw him in April. I haven’t taken Indomethacin since January and can’t due to medication I take for my joint pain. And the last two treatments had a negative effect on my pain. I haven’t heard from the surgeon, I haven’t heard about my referral to the pain clinic. Everything has stalled and I feel I have nowhere to turn. I’m also still carrying anger and resentment towards my neurologist about the letter, it’s inaccuracies and its lateness, despite receiving it a month ago. I should have had time to see the surgeon before the year was out and she should have ensured what she wrote was at least accurate.

I’m also mad because I was reading back through my medical correspondence while putting together evidence to claim for the vaccine payout, and I saw my letter from my neurologist in July last year. Post vaccine my pain was between a 4-8 daily, generally sitting at a 6. I’ve spent 18 months trying to get a grip of my pain and all that’s been achieved is make it worse. I know I’m grateful for the NHS and the resources spent on trying to help me. Let alone what I and my dad have paid for each private phone call or appointment with my neurologist before I got her email address. But I’m also so fucking disappointed in the system at the same time. I feel so let down that I’m in a worse condition and I’ve had to fight and damn near harass my neurologist to get the ‘help’ I have received. That even now a blatant false statement was made in that letter – a statement that the surgeon might see and deem me a low priority case because apparently a medication I cannot take is helping me.

Like I said, I’m carrying a lot of anger and resentment which is not helpful in anyway. It doesn’t change things. It doesn’t fix me and it’s detrimental to my mental well-being. But if I let it go, if I accept that this is where I’m at, I feel like all the fight will leave me. I can’t afford for that to happen. So no, there’s nothing new to discuss in therapy, because nothings moving forward. I’m in a state of limbo, battling to keep my head above the water. I think that’s the best way to sum up how I’m feeling – I feel like I’m drowning. Everything has stopped moving forward and I’m stuck in no man’s land with no idea what or what is coming next. How long must I keep treading water trying to keep my head above the waves?