Tag: self-help

Bella and I.

I feel like I’m holding onto a lot so I’ve come to write and see what comes up.

I had therapy Wednesday which was a great session and much needed. In truth over the last 6 weeks or so I’ve been handling a lot with family and my own health. It’s been a balancing act that I truly failed at and as a result I’ve just been running at constant capacity and still having to keep going. Of course my head had been on fire as a result.

I finally got word that I’m in for reprogramming on April 24th and it couldn’t come soon enough. This programme just hasn’t done a thing and I largely expect I’d have felt the same had the device not been on at all. Except I’ve had a tender head on top where the stimulation is running. So I’m not chuffed and very much looking forward trying again. I wish there was a way I could make sure it’s right this time, I wish I understood it more and understand why when we have got it to work incredibly well it suddenly stops. I wish, I wish, I wish.

Bella had her health check and vaccinations Thursday. This gave me an opportunity to update the vet on changes with Bella and understand these changes a little better. When I understand it makes it a lot easier for me not to get too frustrated and annoyed – which every pet owner does at some point! The best way to describe Bellas behaviour the last month is manic. Crazy tantrums which is yapping, yelling and deep barking at least 10-15 times a day – this is also sometimes accompanied by a heavy paw landing on top of me when I try to ignore her.

I know it sounds awful to say that I do try to ignore her sometimes but the truth is that I always know what she’s asking for. She’s always been very expressive and I know immediately what each tantrum is in aid of. The trouble is that sometimes there isn’t a demand behind the tantrums now – not food, not a blanket, not going out, not attention. It’s just letting off steam, often when she’s feeling anxious or confused. So as soon as I know it’s letting off steam, I let her get it out.

But back to the manic. I explained to the vet this is largely around food and she’s become quite insistent that she’s starving, neglected and never fed. In truth she’s getting more food because of this – but because she gains weight very easily the food she gets extra is carrots, cabbage, broccoli and any other dog friendly veg knocking around. So after more explanation and questions the vet explained to me what’s making her so manic.

Bella is forgetting that she’s eaten, some days mere minutes after finishing her dinner. And because her brain is forgetting it, so is her body – meaning it isn’t telling her she’s full once she’s forgotten. So whilst I haven’t been getting particularly mad at her, because we always have veg for her to eat, I can’t deny that living with Oliver Twist isn’t challenging when she gets quite worked up over it.

Of course the last month I’d say I’ve seen – including what I’ve discussed – quite a dive in her dementia symptoms. She’s been waking me every night, the extra tantrums and food. But she just won’t settle. She’s agitated quite often and the only time she’s calm and relaxed is if I allow her to lie on top of me in the evenings. A 30kg weighted blanket, who flops around like a beached whale with her sharp elbows. But she’s calm. I don’t allow it every evening, but more often than not I give in – it’s something else she’s quite manic over and ignores all versions of ‘no’ she’s ever been taught. I give in, not because it’s comfortable for me, but because if that gives her the few hours of calm she’s craving then that’s ok with me – to hell with the bruised legs.

Over the last 3/4 days she has been a little calmer and she hasn’t woken me up for 4 nights now. However, the decline cannot be ignored, especially with the extra lumps and bumps that keep appearing. She’s been plagued with fat lumps for years, mostly the size of a pea, excluding the golf ball on her chest. So she’s in next Friday to have a starved blood test. They’ll do a full panel and just make sure there’s no other red flags that could have caused this decline along with making sure her body is tolerating all her medications.

So I’m worried. I’m always worried about my soul dog, but now I’m extra worried. In fact I’m terrified because I don’t want anything else to be wrong with my sweet girl, I’m not ready to make any tough decisions. And I’m worried because if something does come up I genuinely have no idea how I’m going to pay for further treatments, tests or medications. Thankfully the vet has agreed to put the bloods through the insurance under the claim for her dementia so I don’t have to pay the excess, but I do have to cover 20% of the cost. So please cross your fingers because my girl doesn’t deserve anything else – she already pops as many pills a day as me!

So that’s where I’m at. I just feel like I have a lot on my shoulders again and the stress does my health no good.

That being said – I’ve accepted an invite to join my brother, his fiancé and their kids at legoland for a day at the start of May. As you can imagine this is going to come with huge consequences, which is why doing a whole day out like that is rare. Most of the time I just don’t consider the risk being worth the reward – it sounds callous but the consequences really will be unbearable. So I’ve also made the decision to hire a mobility scooter for the day. This should hopefully make it more manageable and less exhausting or taxing on my body. My greatest hope is that the kids see me as the cool Auntie with the go kart.

I’m sure I’ll come with more updates or happier news at some point, but for now I’ll end with the positives that have come from these heavy situations. Because while it’s been heavy, both my therapist and I agree that I am and have coped remarkably well. And then I burst into tears while saying ‘I really am coping’. Happy tears, tears of shock, because this time last year I really wasn’t coping and wouldn’t have coped with everything that’s been going on. But I am. I have my therapy where I deload, but it’s just that; deloading. I don’t need to process, seek advice and extra support or have a safe place to admit that I’m drowning – because I’m not. My health is making it hard, these things all take their toll. That’s the part that’s the problem, that’s the part that I’m perhaps not always coping with. But mentally and emotionally I am coping and I am ok. I have dark thoughts quite often – they come to visit like an old friend. But they don’t bother me now, we greet each other briefly and continue on in separate directions. They never stay and I don’t fear them now. Because I know I’m ok. When my head is a 10/10 and I fleetingly wish that I could just end it, I remember that it’ll soon be tomorrow and tomorrow will be different. Or in a few hours it’ll be time to take my evening meds and then it’ll be bedtime before I know it – and I know I can cope a few more hours until then.

So while everything is a lot I am ok and that’s a wonderful thing to be able to say.

I am her.

Today I’ve had to charge my phone twice. FB memories told me that 4 years ago today I posted a video online of me training during lockdown. It was a silly video in which I geared up and walked up to the (out of shot) bar like I was going to war. Of course by war I mean the platform at a competition. I set up and proceeded to lift with sheer grit…two 5kg dumbbells. I wanted to make the world and my loved ones laugh during such a dark and trying time.

So I decided to share it with UKCVFamily, where I now try and make a smaller community feel a little joy since most of us don’t get to experience this enough anymore. This meant downloading an app to download the video from my instagram, as I haven’t got it on this phone. And that’s when my battery started to get depleted.

I have spent 5 fucking hours scrolling through every video, it’s written blurb and all comments since the start of me sharing my fitness journey.

Today I’ve revisited every good lift, every bad lift, every injury and rebuild, every competition and every wonderful show of support and love. Of course it took me into a very dark period of my life in 2020, but also saw the start of me rebuilding both in and out of the gym. Until the vaccine.

I watched myself squat 120kg for 3 reps, and today I often struggle to do one rep without weight and my legs shake often when going up/down stairs. I benched 70kg and bashed out reps at 60kg, today my arms shake when I have to push myself up of the floor where I’ve fallen or got myself stuck picking something up and I can only safely use a kettle with enough water for two cups. The closest I get to deadlifting now is when I’ve dropped my walking stick and have to pick it up, or putting Bellas food down for her.

I became British Benchpress Champion just 4 weeks after a bad lift left me with a herniated disc in my back and I couldn’t walk properly. I won my last regional qualifier just 12 hours after I tried to end my life. Time and time again I came back and I achieved more. I rebuilt myself over and over again, each time stronger, more controlled, happier.

I’m nearing 3 years of this and I still can’t figure how to rebuild. In fact my health continues to decline, my rebuild becomes harder with each week that passes.

On Monday I had a 90 minute appointment with a specialist rheumatology physio. It was a truly humbling and humiliating experience where I had to disclose the most embarrassing symptoms that affect my health, mobility and overall dignity. I was at one point asked if I’d considered a commode downstairs. However I was also told that I was doing much better because I’ve been able to cut down on therapy, despite my physical health being worse. My argument that I’ve been able to reduce therapy because I’ve found myself a part of a wonderful support group, volunteering for charity and because I just can’t afford more sessions, fell of deaf ears.

Yet mentally I know I have improved because last time I found myself going through the showreel of my previous life I went into a deep spiral and I cried for days. I also didn’t manage to view so much of it. But today I went through it all, not because I wanted to, I just got stuck on one of those loops. It has impacted me mentally. It does make me sad, I am horrendously sad right now. It does make me jealous of that woman who just couldn’t see how loved and adored she was, how strong she was, how fucking resilient she was. She was like a fucking cockroach that just couldn’t be defeated. But I also know I am her. She’s still within me, dormant, waiting for her time.

I don’t know how to fix me yet. I mean some days I physically can’t even get out of bed. But I’m not done. I’m realistic, I know I’ll never be that active and that strong again. But I really am sure that one of these days I’ll find something or someone that can help me live again, beyond merely existing. Perhaps next week I’ll win the lottery and I’ll put everything into fixing myself and others like me. But also perhaps next week I’ll get to walk Bella – I’d be equally grateful for that win.

Tonight, I’m going to allow myself to feel everything I feel; the grief, the sadness, the pain and the gratitude. Gratitude that I went on that little journey through time today to remind myself that the same person who achieved all those things is still within me.

1 year of not being alone.

Today marks 1 year since I found and joined UKCVFamily and a lot has happened between then and now.

It may seem an odd anniversary to be remembering, but for me it is one of the most important. I never planned to be here, not in the physical sense though that too, I mean this situation was not in my life plan. But you can’t plan for everything, life has its own mind to some extent.

Every person goes through some rough patches in life, some more than others. Each experience unique in its design. I never considered myself to be someone that had experienced many rough patches, despite having health issues since I was young. But then I realised I wasn’t mentally well, and not until it was nearly too late. But I healed. And then the world was shut down and I continued to heal. Until the vaccines were introduced.

Many of my friends, family and readers will know that the time that followed this was one of those rough patches. The ones you cannot plan or foresee. Despite my previous healing I would repeatedly think and sometimes plan to not continue my journey. It was too hard, too heavy and too fucking painful. My every waking moment was and is consumed by extreme pain.

I don’t know how I got through the bulk of this time on my own, feeling like no one else in the world understood what I was going through. The world saw the odd report about bereavements, but where were the stories of others like me who daily felt so unwell that they could only assume they too weren’t supposed to survive but somehow did? I’m lucky to have had such an incredible support network and therapist that managed to keep my head just far enough above the water.

But then suddenly I wasn’t alone. My mum texts me from work one morning with a photo of an article and from that I would never feel so alone again. That very same day I went back online, as I had weekly, to find a support group of others like me – only this time I had their name; UKCVFamily. I filled out the membership questions and to my great surprise I was accepted into the group. It shouldn’t be a surprise, but I feared that with the doctors refusing to acknowledge the V as causation that I might not qualify. But I soon realised they’d never dare to be so short-sighted.

The support I’ve received has been phenomenal. The support I was already receiving was and is phenomenal, but finding others like me was incredible. Suddenly I had another army behind me, cheering me on and pushing me forward. I received responses full of love and encouragement, but also deep understanding. Through treatments, disappointing health appointments and even my wins, they were there for it all.

In July I joined founders and other members in London to tell my story to MPs in parliament and help get their support of our group and all vaccine injured across the UK. This group was so incredibly inspiring, achieving and opening doors like I’d tried to do the year before. But they were really doing it! I immediately felt at home among them when I got off the tube and I wish I could have stayed with them longer. I felt whole.

Later in the year, post surgery, I joined the admin team. I volunteer and help moderate the group and keep everyone safe, including the group itself. This hasn’t just given me more purpose, it’s brought me closer to so many and no matter what is going on or how bad I feel I get to be a part of their fight. Every day I get to help others, with a group of people also intent on helping others, despite their own prevailing health concerns. We operate as a team, we work together through the lighter stuff and the darker stuff. We laugh together. I didn’t realise quite how much I’d missed laughing more.

This year has flown by really. Thanks to the group I have significantly cut down on therapy sessions and have found others like me. My highlight would have to be meme Friday – a day we all come together to laugh. Not all health related, but the ones that are often appeal to my dark sense of humour. But that’s my favourite day, not my favourite thing about the group. It’s the fact it’s beyond welcoming. Like when you’re with your closest friends and you can share anything and everything, even the intrusive thoughts you were taught to never say aloud. There’s no judgement because everyone understands or has thought similar. There’s no one looking at you like you just ruined family dinner, again. If you could see them they’d be looking at you like ‘fucking same bro’. But that’s why zoom socials are held so members can truly see and hear this deep understanding.

My role within the team is evolving and one thing I can say with absolute certainty is that I was meant to be here right now, in this situation with these people. These saviours. I was meant to be doing this, helping people with this group of heroes I’ve found myself a part of – giving purpose to all the lessons that I’ve been through.

My every waking moment is still extreme pain. I’m not always happy, but I’m also not always sad. I understand now that that’s exactly how life is supposed to be. No one can be happy every moment, but they can be a peace with whatever they feel that day. I am at peace right now. I still have heavy days, I still have angry days, but I’ve come to realise and accept that they are just days. No more powerful than my happy days and good days. But every single one of those days I get to share with this group and team. And every single one of those days I get to help someone else, regardless of what kind of day I’m having. That is powerful and meaningful. But then that is UKCVFamily.

Lessons and love.

I’ve just had a wonderful therapy session. I feel I’ve done my ‘growth’ and learning. Now my focus is on putting it into practice and continued therapy on a 5-6 week basis gives me a place to go where I can discuss what’s been going on, my wins and losses and where I can improve. Having that place to touch base helps me reorganise my thoughts and identify where I’ve fallen short without fear of judgement, especially from myself.

Recently you’ll know I’ve been far too active and as a result I’ve been feeling awful. It also means I’ve been feeling horribly disconnected from everyone as I haven’t been able to see people regularly. The isolation is real ya’ll!

It seems as though I feel like I’m making good progress and getting myself into a stable routine and schedule that I can maintain. Then something comes along – like ordering a bed that arrives super fast, where all routine is lost and I feel I have to push through and do so much. That breaks my good cycle and it’s hard to get back into it or even see that it’s happened. That’s where I’ve been, I didn’t realise what had broken the cycle or that it was broken and that’s why I’ve been feeling out of sorts.

Now I’ve identified I can focus on getting back into healthy routines of one task or one social visit per day (not both) followed by a rest day which can include self care, like a bath. I have to keep myself healthy so I can have a few visits per week, which in turn keep my mind and soul healthy, which make me feel better and lighter. It all impacts each other and I need to be extremely mindful of that. I cannot cram and then crash – it’s very bad for my mind and my overall health.

This also means that the safeguarding course that I’m doing needs to be tackled differently to how I studied as a teenager. I cannot pretend I have ages to meet deadlines and then cram everything in last minute. My health cannot take that type of learning. I never really learned how to work any differently growing up, but now I must break this pattern for the good of my health. Because this course and my volunteering mean so much to me that I must make them achievable and accessible.

I’ve also been exploring other treatment options further and will hopefully be taking further steps towards that this week. To take control of what I can, where western medicine is not helping.

I also wanted to share some lovely experiences I’ve had. Friday night I went for dinner with friends, despite feeling horrendous and not up to it. But I had to eat, right? It was wonderful, the food and company were great and I felt so connected. It was exactly what I needed to break my cycle of misery. It meant I felt up to doing a few bits on the weekend so double win!

Yesterday I finally got to see Hannah and Ivor after several weeks. Not to mention my doggy bff Ed. I feel to have such an incredible connection with each of the people in my life, a different connection with each that gives me so much. I feel so full and wholesome when I can maintain these. Ivor has grown so much, he’s wonderfully healing for the soul with his big beautiful eyes and inquisitive nature. And I felt pretty good yesterday, or my version of good, which meant I felt so present and had a really deep catch up with Han. I’m incredibly grateful for this time, it’s rare I feel as alert as I did and it made our time together even more special for me. And of course my man Ed, I feel we just get each other, which means I get to see his happy wriggling butt whenever I go round and celebrate him being the best big brother by giving him a bottle to chew. Simple pleasures that make him wriggle extra fast with happiness. I’m grateful to have spent an afternoon as happy, fun Auntie Chlo. I title I will cherish forever for all the children in my life who make me feel awesome. And even managed to squeeze in a really nice visit with my Grandma before my inevitable crash!

I feel, despite breaking my healthy routine, I’m making positive steps. To be able to identify the cause of my unease and actively work to get back on track to maintain my health, to then maintain my connection with those I love and who love me. For now that is my purpose, and it’s the best I’ve got. And right now that enough. It’s more than enough. It’s not what I once had, and that’s sucks, but right now it really is enough and I’m grateful to be here for it. I was meant to be here for it. These lessons and connections are what I am meant to be here for- they are my purpose and goal now.

Out of whack.

I feel a bit out of sorts at the moment. Like I’m constantly trying to catch my tail. My head seems to be a bit more stable, which is a good start and a sign that this programme is starting to perhaps take effect. I’m still not able to adjust I don’t think – I’ve lost track of time if I’m honest. But as I am allowed to use the constant programme, I’ve experimented by turning it on when active and I must say the consequences of the activity are significantly reduced.

But still I feel out of sorts. I’m restless, yet I desperately need to rest. It’s like I have adrenaline coursing through me that just won’t allow me to properly stop. I’ve been too busy of late, something that’s been out of my control. Following the great clearance of my room and my new bed I had to catch up on my safeguarding course. I’m doing it as part of my role with UKCVFamily, and, while thoroughly interesting, it’s quite heavy and highlights the extent of my cognitive decline. It’s not been easy, but I’m getting there. Thankfully the funding college is very supportive and allows me to extend deadlines to allow for the excess downtime my health demands. So I met my deadline last week for unit 1, and then had a few days of deep suffering before going to see my brother on the weekend. It was a great day and I love seeing him and his family, especially when there’s a roast beef involved! But the 5 hours of driving killed me off. Sunday I rested, ready to take Bella to Bristol on Monday to have her very expensive eye checked out. It’s still stable so that’s fab news! Yesterday I took mum for some tests and now I’m in bed. I’m desperately trying to rest but I feel out of sorts and fidgety. A bit like when you’ve forgotten something but can’t put your finger on it.

When I’m like this my tremors and shakes are worse, and I get easily frustrated with myself for making regular typos or being clumsy. Though it’s not really clumsy, just normal function through the tremors isn’t so easy. On these days I normally decide the kettle is out of bounds, though I often don’t notice that I’ve poured boiling water on my hands until the next day when I wonder why they sting a bit. So it’s easier to just stay away. I am frustrated, I need to be studying and getting on top of some admin, but I also know my body needs to rest and whatever I do will only infuriate me further. But the buzzing feeling inside just won’t go away, though it won’t go away if I do something either. With this I do also feel a strange sensation in my head, a little woozy is the best way to describe it. Dizzy but not dizzy, faint but not faint. Strange, but I wouldn’t be me if I wasn’t a little strange.

These are some of the things I’ve been unsuccessful in getting help or assessments over. My main focus since the V had always been my head pain because it really was the most overwhelming issue. But I have been trying for over a year to get some answers and help on the rest, to no avail. So for now I just have to accept being buzzing and also useless!

On the bed – I’ve not once had issues getting in and out of bed. No more grunting and straining, no more crawling to the bathroom. It’s been the most wonderful investment into myself and I’m glad I spent the money. It seems minor, but it really did use up excess energy to get myself up or down, so being able to eliminate that struggle has had a huge benefit. I bought a rather large footstool, which helps both Bella and I onto the bed some days. For Bella everyday as she’ll do a damage jumping from this height, and despite the dementia she seems to have finally accepted using the stool.

I think the biggest win is the help that I got from Kalie and Laura to clear my room and make it a much cleaner, clearer and manageable space. Every day I’m able to reset my room and within minutes it’s clean, tidy and calming. I also get to reset my bedding daily which not only helps me in my OCD but also means I’m getting a little exercise in everyday. You may laugh at thinking it’s an exercise, but some days even just going downstairs to grab a drink registers as intensive exercise on my Garmin! So all in all it’s a win and I’m grateful for all the help I received as I can now manage to keep this space the sanctuary I need it to be. My dad also came and put my tv on the wall so I could ditch my desk, clearing the space of more clutter. I do need to make a new shelf to go under the tv, but it’s not a necessity right now. I made my other scaffold shelves and know it won’t take long to sort another, it’s just not a priority worth spending spoons (or money) on.

Most importantly, I now no longer feel my wonderful candle collection is a waste to burn on a messy room. I always felt my room and the chaos it was didn’t deserve to have good wax wasted on it. Now I get to burn all the lovely scents I’ve collected, though it’s still hard to choose from my 30+ candles. But now it doesn’t feel wasted as sanctuaries deserve a calming scent to match.

So that’s where I’m at. A lot of ramblings about nothing in particular as I’m feeling out of sorts and my thoughts aren’t particularly coherent. I hope you’re all well, and I must apologise as I still haven’t managed to catch up on my messages. In truth everything has fallen behind, this is actually the first thing I’ve written since my last post because I’ve just been empty with nothing left to give. I will catch up and I’m grateful for everyone being so patient and understanding!

I’m still standing.

I should probably let you all know I’m still alive – I know my posts showed I was in a dark place and then going MIA isn’t great. But I’m here and in a slightly better place mentally.

Wednesday I had reprogramming. I now have two programmes – one in the background of my head (root of the nerve) and one on the side (to cover nerve branches). I have to stick at the current settings for 3 weeks. If then I still don’t feel an improvement I can switch to every 3 minutes. If I then get overstimulation pain I can turn back to every 6 minutes until it settles. On worst days I can also turn to the continuous programme for a few hours in the morning – I’ve done this a couple of times since and it has helped a little! I asked if it was normal to switch between programmes and was advised that they have a patient with a day programme, night programme and a programme for when they are in public. So basically there’s a lot more we can try but I have to trust the trial and error process. It didn’t stop working because of the cutting out (that’s a normal due to nerves moving with the head and therefore not having full contact at all times). It stopped either because my body got used to the stimulation or it decided it was too much stimulation. So I’m trying to trust the process, even though I’ve still been confined to bed since. My pain is more steady with both programmes, still too high, but less additional stabby pains. So I guess it’s not all bad!

My greatest news is that I have finally reached my savings goal and yesterday I ordered myself a new bed. One that I’ll hopefully find easier to get in and out of, one I’ll be able to change the bedding myself on, but also one that’s an ottoman so I can hide some clutter from my room and make it homely and comfortable. Cause it feels like I’m living in a car boot sale stand right now.

I don’t really think there’s much else to report on so I won’t bother waffling. But I didn’t want to tell you about a book I read by a friend, Caroline. Also V injured, she has achieved many things in her life, including being the co-founder of UKCVFamily the group I volunteer for. One of her other achievements was her efforts in supporting the peninsula that was devastated after the 2011 tsunami in Japan. At the time she was living in Japan herself. She wrote a book about it called One Month In Tohoku. It was incredibly inspiring and was really what helped raise me from the dark place I have been in. Well worth a read if you’re interested in hearing about the spirit of the people who were impacted and all Caroline managed to do to help them and truly become one of their community. I’m incredibly proud to know her and be a part of the group she has contributed towards and continues to fight for. A truly inspiring lady!

So anyway that really is all I’ve got now. I’m grateful for all who have checked in, and I will get back to you when I have a bit more energy! For now I will continue to rest and continue my quest to find more treatment options that may be worth trying and how I can fund them 🤍

Inadequate.

It’s not easy to understand someone with a chronic illness; to understand what they feel, what they think and what a day looks like for them. It’s why I share my journals. I know I’m just one person, but one person can help others. To give them a window into a world that is hard to navigate and even harder to fathom.

I think becoming so unwell is much harder to deal with when you’ve lived a life as an able bodied person, whose ailments didn’t prevent her from truly living. Of course that’s an assumption, but I have always been unwell, unwell was all I knew so to manage it just became normal. But I was never quite this unwell. My body never betrayed me to the level it does now. Now my health makes me feel inadequate in every way. My contribution and abilities are inadequate, and what I get to experience of life is inadequate. And while there is hope with this implant, the truth is that every time it stops working and I’m once again faced with near solitude in a dark room it gets much harder to cope with each time. The mind gets darker faster and the heart feels a little cold. It feels like I lose a little piece of me each time.

Quite often I’ve been locked down for so long that when I do eventually emerge outside these walls again I find the trees are a different colour, the season has changed and the world seems a little alien. It’s the same, of course it is, it’s all familiar and I know it, but it also feels a little strange and like something is different and I just can’t figure out what. But eventually that feeling goes and it feels normal, until the next time my health prevents me escaping for a while.

To not be able to live how I once did is soul destroying and so I don’t let myself get lost in thinking about it for too long. But when each time I’m thrown back into levels of pain no human should ever know exist it’s harder to keep those thoughts away. Each time it’s harder to not succumb to the fear that you won’t recover this time; that they can’t fix it this time. That the last time you had a good day will forever be the last one.

You could say it’s irrational, given that we know how well the implant can work for me, but what if this time the wires have moved a little too far to be able to use the most effective contact points? The truth is that I just can’t fully trust a device that only seems to be able to provide relief for 10 days at a time before I have to arrange another visit to the IT guys. But when it can take 6-8 weeks before I get to see them, suddenly 10 days seems woefully inadequate. When I still have to spend a good 40% of those days in bed recovering and resting.

It just seems like such a waste of a life. I know my mind will become a safer place when my pain eases again. Right now I cannot help but feel like an inadequate member of the human race. I cannot even care for myself. The best contribution I can give is sharing these journal entries – a glimpse into my pitiful existence and my journey through surviving these thoughts – along with my volunteering for UKCVFamily. The volunteering helps immensely, it truly gives me a sense of purpose where I can otherwise find none. I know my contributions help others like me find the support they need. I know that I am strong enough to help others, even when at times it can feel impossibly heavy. When I can feel impossibly heavy. I hope I can someday do more for our cause, I hope I can become an old lady able to recount her part in making the world a little better even for just one person. For now my energy must be spent on making the weight on my own shoulders a little lighter.

Believe it or not I consider myself to be in a very fortunate position. I know many who do not have the support around them that I do. I’m also very fortunate in that I have a wonderful therapist and I’ve managed to squirrel a little money away so that on Monday I am able to message and ask for my next session to be brought forward if she can squeeze me in. I am just not able to cope with this trauma alone, for that is what I’m going through; trauma. I will always be grateful to the friend who sent me Lee’s details for she has saved me time and time again, ensuring I have the tools and the strength to get through these periods. The NHS couldn’t/wouldn’t help me but Lee never faltered. I also now know when I need more support, I know when it’s time to call in for reinforcements. And I’m lucky that I am able to afford to do so right now.

I hope one day when I’m old and grey, and this period will seem but a blip in my life, I will be able to look back and be grateful for this time. The lessons it’s taught me, the time it gave me to find myself, the true strength and resilience I have shown and the wonderful people it has introduced me to. Along with the deeper connections I have made with those who surround me, for they are truly the heroes in this story. It takes a village to survive the darkest times life can give you and I’m very lucky to have one. And so my glimmers revolve around my time with them, and if the best I have to give back is buying lunch or an occasional 20 minute meal, then for now that has to be enough and I look forward to being able to resume these moments.

A brief respite.

I must admit I’m rather fed up now, I’m sure you guys must be tiring a little of reading the same complaints too. But I share my good and bad so others know that if the best they have today reflects one of my bad days then they are not alone and for people like us it’s perfectly normal and ok to have these thoughts, feelings and experiences.

Yesterday was marginally better, which was a blessed relief. But I hoped that would be the case as Thursday evening I changed my settings from stimulation every 6 minutes to every 3. I hoped that given the implant cuts out when I turn my head that I wouldn’t have pain from overstimulation. My assumption being that I’m not receiving full stimulation – hence my current state of hell – so by changing it to every 3 minutes I might get some relief. And I did get some relief, but I also spent most of yesterday trying to ignore the increasing tenderness to the back of my head. Alas it grew to be too much by the evening and I had to turn my device back down to every 6 minutes. The overstimulation won this round.

My dad came over with lunch yesterday and it was lovely to see another face and get some social interaction. But the visit really took a lot out of me – though given the choice I’d have still chosen to have lunch with my Dad. It was lovely, he told me about his first morning of HGV1 training, we checked in on each other and we really laughed. I mean at one point I even peed a little and I haven’t laughed like that for some time.

Through lack of hair wash and generally having an itchy scalp I decided it was time to give in and wash my hair. But the boiler had other ideas and decided tepid was the best it could heat the water to. So instead (thinking I’d fixed the problem) I had a very rapid wash in a cold bath. By then I was exhausted, cold, and in a lot of pain.

Mum finished work and to try and ease my scalp she helped brush my hair (and give my head a good scratch). It doesn’t matter how old you are, having someone brush your hair is lovely!

We had dinner and I reluctantly turned my device down and settled into my heated blanket to try and get the chill out my bones.

This morning is awful. I don’t recall waking in the night and I’m always asleep around 9-9.30, yet I am at a really deep level of exhaustion. The cat woke me up at 7.30. I must have moved and Pru saw that as invitation to dive under my duvet to attack whatever creature was daring to move in her domain – my feet. So off I went to do our normal morning routine – sorting Bella and myself with meds, breakfast etc and stopping Pru from bullying Bella into giving her her breakfast. The cat is a tyrant and I adore her. Back to bed I went. I don’t go back to sleep, but I do have to do this daily to wait for my meds to kick in before I can function further. Around 10-11am is when I know what my minimum pain levels of the day will be. Today it’s a solid 10/10. Truly I wonder why I bother popping all these pills, but I don’t wish to find out that my current 10/10 is in fact a 7/10. No thank you.

But I have two parcels that must be collected in the next 24 hours or they’ll get sent back – both at different locations and I need to get Bella some meat from the pet shop. 3 locations I need to visit today, yet I have been led here needing to pee for a few hours now and I can’t bring myself to visit that one location down the end of the hall. Bella is in one of her moods – the kind where she absolutely needs tucking in every few minutes because she won’t lie still, but the kind of demand that comes with the thump of a paw and a constant whine or grumble. She also really needs to go out, though she has 4-5 times already. But you can’t tell a dog with dementia that she’s already been, I mean you can’t tell any dog that anyway – they’d just look at you funny thinking ‘what the fuck is she trying to say?’

It’s a difficult position to be in. I know I should ask for help in collecting these parcels and dog food, but it’s also not in my nature. My friends and family do a hell of a lot for me, my mum in particular, so it feels very greedy to ask for more help. Especially help such as going to 3 different locations, because that’s very inconvenient for anyone. But I also know, like I’ve known for over a week now, that I am in no fit state to even consider taking myself. It’s hard to accept not being able to drive. As a petrol head and someone that just loves driving anywhere for anything, or even nothing, not being able to drive is a hard pill to swallow. Mostly because it seems that my list of things I can’t do is always growing and I hate not being able to do for myself. I’ve always had to do for myself, I was raised fiercely independent. It’s not in my nature to accept that I can’t drive or can’t wash my own hair, or can’t provide myself with meals. It’s why I ensure that everyday I provide everything Bella needs, except exercise. I can’t care for myself, but I will continue to do everything I can to care for Bella’s needs. Though I admit some days I really do wish for a day off from the constant tucking in, letting out and handling of tantrums. I do get it, I get her needs – I know what she’s asking for every time when others can’t read her signs. But I know every one of them, including the ‘I don’t need anything but I do really need to shout at you for 10 minutes’ tantrums. I can’t blame her, I’m bored and in isolation, which means she is also bored and in isolation. It’s not her fault, so I allow the tantrums and I do give in and tuck her in 99% of the time, even if it’s 11am and you’ve run out of fingers and toes to count how many times you’ve already tucked her in. It’s not her fault and the dementia really exacerbates the urgency of her demands. Everything is life or death. We had a very active life and saw the outdoors for hours at a time, now she sees the outdoors maybe once a week at best, once a fortnight at worst. It’s awful, truly awful. It’s the part I struggle with most, because dogs need outdoors, they need to run and rip grass and feel the breeze. It’s just something I’m not capable of providing at a level she deserves, so I will give, borrow and steal every spoon I can to ensure every other need is cared for.

I have gone on a tangent but I have such guilt over my ability to give Bella what she deserves so it’s something I write about often. And you’re probably wondering how I’ve shared so much this week if I’ve been so bad, but writing is how I process. It’s my coping mechanism so I absolutely have to write in order to safely get through these periods, only this time I’ve chosen to share them all with you. It was recently pointed out that my unshared writing is probably the most important, so I’m trying to not hold as much back because they are right.

But oh how the tables have turned in the last few minutes whilst I was writing my woes. Mums off out to Sainsbury’s to get a stair gate to stop Bella eating the cat litter (where one of my parcels is), she’s also going to B&M which is right next to the pet shop and she already had Bella’s food on her list. She’ll also be driving right past the newsagents that have the other parcel. I cried in frustration of not wanting to tell her what I needed help with, even though it was her who asked first. I got a firm telling off, that she asked because she wants to help and understands that I didn’t want to ‘burden her’ but that it was a load of tosh when it turned out she was going to all the places I needed to go for her own needs anyway.

This is my problem, I just always assume that I’m being a pain in the ass asking for things. I’ve always felt that way, I’ve always felt that if I haven’t got it in me to do something then why should I expect someone else to have it in them. So then I don’t expect that and I don’t ask it because above all else I just don’t want to be a pain in the ass when others go above and beyond to care for my needs already.

But now the pain in my head has grown from having a cry and stressing myself out over my to do list that really the best I’ve got is lying back down and hoping beyond anything that maybe I might be able to drift off and sleep through a bit of this pain.

I hope anyone reading this has a wonderful weekend 🤍

An extortionate lunch.

My pain seems to be receding a little today. I use the word receding because that’s what it feels like – my face and my jaw aren’t quite so bad, though my half shut eye will try to tell you otherwise. The pain is largely around the back of my head and a little over the top and side, as I say, receding.

I had my tuna roll for lunch. It can sometimes feel quite daunting making food from scratch, and I know that can sound quite silly to some when I’m just discussing making tuna mayo with sweetcorn and some par bake rolls in the air fryer. But as a task that is often too much for me it really can seem daunting because I can never fully predict its impact. For instance a few weeks back, when I was laid up for a long period like I am now, the thing that brought it on was half a bowl of washing up. Nothing wild, just a few plates and mugs that I thought I’d clear so mum didn’t have to when she got home from work. But that simple 15 minute task fucked me up for over a week.

So I made my roll and I’m in a bit more pain. I sat up whilst eating and remained that way for about 45 minutes. I don’t do upright very well, it always brings more pain, but I try to do this every day at some point. Now, as my pain is higher, my neck is sore, my wires are pulling and my belly is full, I can’t help but wonder just how many spoons I’ve just used. The task of getting out of bed and down the stairs is definitely a spoon. Then another spoon can be attributed to the making of said tuna and whacking rolls in the airfryer. I think the sitting up to eat and staying that way a little longer probably cost me two spoons. Which, personally, I find to be a fucking ridiculous amount of spoons. You could almost consider it reckless accounting. Or reckless spending.

Mums working from home today and while making my lunch she apologised because she hadn’t bought me any pot noodles. I immediately dismissed her apology, reminding her it was me who told her to stop buying convenient food. It’s not good for me, it’s just filling a hole with something that doesn’t nourish my body. I need to not have them to be encouraged to make better choices. Even if it does cost me some extra spoons.

Sitting up I often assess exactly what my body is feeling. I like doing a whole body scan, it’s my favourite meditation and really helps me get what I’m feeling across to doctors and surgeons. I was thanked for my ability to describe minute changes in my implants stimulation during my last reprogramming. But I digress. What I feel in my head and neck when sitting up is that my neck just isn’t strong enough to support my head. My head feels impossible heavy. When with friends I will often have my head on my fist to add support so I can stay that little bit longer. And this isn’t a post op situation, though it certainly made it worse due to all the damaged tissue. This has been ongoing since the vaccine and the start of the decline in my mobility and strength. Which seems rather strange for someone who could bust out reps with 120kg on my back not too long ago. It’s why I’m still fighting the NHS because joint hypermobility just doesn’t account for the suffering of my body. And I’m very aware I only get one body. Perhaps when I pass and my soul finds a new body to inhabit it’ll be in better condition. But right now, with my, my, consciousness, I will only ever know this body and I’d really like to see it working for me again. Not least to see an end to my suffering and counting of spoons, but because with a functioning body I can really do a lot more with life and I think aside from ticking off my own bucket list, I can also play a bigger role in helping others who have gone through this, or are going through this, or will one day be going through this.

But until then I’ll be returning to my horizontal resting place to read a little more, whilst looking at the washing that I very nearly remembered to take down with me when I made lunch.

Laugh at the fart.

When someone becomes chronically ill, aside from the obvious changes to their life, there are sometimes other impacts that may not be quite so obvious. They may creep up on them, those around may not quite realise the severity or assume the change is an obvious consequence to their health.

The change I’m referring to today is their ability to feel joy. And not just feel it, but to accept it, embrace it and want it. That last one may seem a bit strange, but bear with me on this because it really is coming from a place of experience.

I’ve mentioned before that last year I had a therapy session, in fact I had many, that were focused on joy and fun. My sorrow at feeling like I’ve missed out on so much fun, that when I am better will I have missed it entirely? Will those around me, whose lives have continued, still want to repeat the fun with me when I am better able? We of course deep dived as we always do and got down to the root of the issue. This particular session started with ‘I don’t know how to feel joy anymore’. Later after much tapping my therapist asked ‘what stopping you from feeling joy?’ And without consideration my response was ‘I don’t think I deserve to’. A terribly sad statement, wouldn’t you say?

Of course, I know I deserve to feel joy and have fun. At least, I do now. But in that moment, and for many before, I didn’t believe I deserved joy. How could I possibly accept any joy into a life that is so surrounded by suffering? How could I allow my suffering and darkness the opportunity to taint the joy? How could I enjoy fun knowing the consequences it would have? So I subconsciously decided that joy didn’t have a place at my table. That’s what I mean when I said about not wanting to feel joy.

For those who have never felt this it may be incredibly hard to understand. I expect many who suffer depression might have an idea of what I’m talking about. Those who don’t know may assume their loved one is a bit down about their health and may not be in the mood to laugh. But how long can that excuse remain valid? I mean of course it is valid, but I mean at what point does it become a greater concern?

My goal, and it’s a very simple one, is to ensure that each day I get a dose of joy or fun. It can be as simple as sharing a meme, laughing when I see friends (truly laughing!) or playing with the babies, children and dogs in my life. All these things I can get my recommended 10cc of daily joy. I currently accept that fun has to be tailored to my health, and I continue to process the grief of that. But that doesn’t mean that I can’t bake with friends, do messy science experiments in the garden with god goddaughter, arts and crafts with friends or a zoom session with members of UKCVFamily. Dark humour brings me joy, and it is often in the most inappropriate times. But I don’t care, because if anyone deserves to make a sick joke at bad timing, especially if it’s about my health, then it’s me and anyone else who’s suffering.

I can feel my suffering and the grief and remorse that comes with that. I can feel my sadness and sit it. I can do some tapping and tell myself ‘I’m ok, I’m safe, and I love and accept myself exactly how I am’. It’s hard, it’s really fucking hard. Some days more than others. But I can now accept joy too. My loved ones are all willing to share joy with me and have fun at a level that I can manage.

I just want to say that this path is not easy. I’ve had health issues since I was a young teenager, but this situation that floored me happened 32 months ago and I’m still learning. I’m literally talking about a healing process that has only led me to accept joy in the last few months. Joy is new to me all over again, like the first time your kids laugh at a fart. I’m 30 and I’m suddenly that kid again, laughing at all the farts. (Not that farts ever stopped being funny to me!)

I’m incredibly lucky to have the support I do and to feel so much love. I know not everyone is quite so lucky so I hope my writing and sharing these battles helps others. Not just others suffering, but to give a voice to those suffering that can perhaps give their loved ones an insight to the internal battle they’re having. The greatest advice I could give is to give space for all your feelings, each one is valid, but remember that everyone is deserving of joy. Laugh at the fart. And maybe if you’re reading this and thinking of a loved one then perhaps arrange a little fun that is manageable for them. Help them remember that they can still have fun, it just looks and feels a little different now.

A friend shared a quote with me this morning that really resonated and explains why I write all this babble and share it so openly. Thank you Tracy.

I recover out loud so those that suffer in silence can see the threads of hope woven among those of pain.

JD Lynn