Is hope safe?

I think it’s difficult to talk about how hard it is to have hope, when it is also the thing that keeps you moving forward. But, if you know me, you’ll know I’m going to give it a go! 

As someone with chronic illnesses, hope gets me through the day. Whether that be hope for tomorrow to be gentler, or hope that one day I’ll be able to afford my own home and be able to live independently – which of course means I hope to find a way to generate an income.

I no longer hope to get better, I simply hope to not get worse. This change for me felt necessary, because hoping to get better meant bitter disappointment that would often send me into a spiral if I didn’t catch it in time.

It’s nearly been 5 years since my adverse reaction to the Pfizer vaccine, and I held so tightly onto my hope that at times I required therapy three times a week. I didn’t cancel my gym membership for nearly 7 months because I hoped this would be temporary. 

Then I fought, I used the hope I was clinging so tightly to, to fight to get help and treatment and tests and referrals. And every single appointment left me with a fresh wave of anger, disappointment and grief. I developed medical PTSD, genuine trauma from these appointments because I was clinging onto that hope so tightly. That’s not to say the trauma was my doing, but it left me vulnerable to the dickheads I’ve met on this journey.

Next month I have an appointment with a FND specialist at Southmead and in therapy last week I spoke about how hard I find it to be hopeful. What do I feel instead? Trepidation, mostly. 

While most around me are feeling hopeful that this is going to be the door that opens up avenues to progress, treatment and rehabilitation, I am almost rooted to the spot by my fear of disappointment. Even while the doctors tell me how hopeful they are, I find it difficult to contain my snort of derision. 

I may not have seen this specialist before, this for me is an entirely new department, but the raw memories of what my hope has done to me mentally and physically are ever present as I draw nearer to the appointment. I hope I don’t get gaslighted or ridiculed, I hope I go in with an open mind and open heart, but I know I’m approaching this like I would a sleeping tiger. Gently, careful not to leave myself open to attack. 

To prepare, and be armed with everything they could possibly require, I need to form a list of all my symptoms to date, including the ones that have eased. This means looking at my health as a whole, going back over the last 68 months to identify everything. I cope by refusing to look at my health as a whole. I take each day at a time, I assess what I feel like in the morning and go from there. I don’t go to bed worrying about how I’ll feel tomorrow, and I don’t wake up worrying about how I’ll feel tonight. In this moment, what have I got and what’s the best that I can do for me? 

As a chronic illness patient, I’m a doctor’s worst nightmare – no, I have not been tracking my symptoms daily for over 2 years. Because then, while also not holding so tightly onto hope, my mental and emotional health are easier to manage. Each day I wake up with no change or a decline is a disappointment, so I’m not going to remind myself of what yesterday, last week or last year felt like. The same as every time I take a step I’m shocked that I don’t walk normally, I don’t need to add to this constant grief cycle. 

When I had to do my PIP review, it required me to go through my original PIP application and see what had changed. I wrote about it at the time, but I can tell you it was a fucking lot. Everything had changed. I thought I could get away with “see before” across each section but those hopes were quickly dashed. That review was quite a traumatic experience for me and one I hope not to repeat as I prepare for this appointment. 

Instead of hope, I identify myself as having ambition. A deep, burning ambition that I don’t know how to use. I know, with my whole soul, that I’m here for a purpose and I will spend this year trying to find an avenue that I can apply that ambition to.

Ambition feels safer somehow, because I don’t take ambition to appointments where it can be damaged. Hope gets damaged at every appointment. Yet still, every single day, I sit here dreaming of creating life of my own in a little bungalow. A home built around my needs, a little place where friends and family can visit and a sanctuary I can rest whenever I need to. I hope for this because I hope for a day I can built a life on my terms, working with my health rather than against it. 

I’m already working towards it, not financially of course, but in trying to build a life on my terms. That’s where I apply my hope, the hope for a gentler tomorrow and a hope not to get worse. But I can no longer take hope to appointments with me, it’s too fragile after taking so many hits. 

Mental Health Support Services

As promised, this entry is to provide a list of resources that I’ve found in my journey to support mental health. Some are widely known, others I’d never heard of but have found useful to either know about to make us of myself. Some are also location specific, and I’ll point this out. I’m including them because if they exist in my area, then it’s likely there will be something similar running in the area you’re reading from.

111 – Option 2

Calling 111 and selecting option 2 will take you through to a 24/7 urgent mental health support line. You’ll be connected with a mental health professional who will provide immediate advice and guidance. This is particularly useful for those who feel unable to go to A&E or try getting a GP appointment – because we know what that’s like! So, if you’re in distress or are having thoughts of harming yourself or others, there is immediate access to someone via this line.

Access Community Mental Health (Alabaré) – Wiltshire

https://alabare.co.uk/our-services/mental-health-help/

As you know, I was paired with the lovely Natalie at Access Community Mental Health who provided me with weekly sessions. These sessions take the form of talking therapy, but she also helped me reframe my mindset about the things I can’t do and helped me identify things that I can do with my limited energy and other interfering health issues.

Access will pair you with a mental health professional who will work with you to help you work towards goals you may have, improve areas of your life that are causing you issues, find better coping techniques and access other wellbeing and resources available near you. These can include group activities, such as choirs, support groups and even creative writing groups – like the one Natalie found for me.

From my experience, there was only a short wait before I was able to start with Natalie and they give you 6 free weekly sessions which last roughly 45-60 minutes.

Access is Wiltshire based, in partnership with Wiltshire Council, so it’s worth looking at your local councils to see if they have a Mental Health and Wellbeing Partnership.

BSW Recovery College – Bath, Bristol, Swindon, Wiltshire

https://www.second-step.co.uk/wellbeing-colleges/banes-swindon-wiltshire-recovery-college/

This was something Natalie introduced me to, and I personally think it’s a hidden treasure. The Recovery College provides courses and workshops which can be accessed online and in-person, with quite a variety of useful topics. Their courses include Better Sleep, Building Resilience, An Introduction to Low Mood, Managing Anxiety, Self-Kindness (I’m booked onto this one), ADHD: Minds of All Kinds and Managing Intense Emotions.

Some of the courses are multiple sessions, while others, like the Self-Kindness course, are single sessions. I’m booked in for tomorrow (4/2) and will do a little journalling on my experience.

Olive Branch – Wiltshire

https://olivebranch.charity

Olive Branch is based in Chippenham, Wiltshire, and offers low-cost therapy for a period of up to 6 months. The waitlist is around 3 months currently, I initially referred myself in Autumn and I have my first session with my assigned therapist, Heidi, on February 9th.

When you apply you do an online self-referral, which is fairly extensive, and then you’ll have a further telephone assessment so they can pair you with the therapist they feel will be the best fit. Then you’ll be placed on a waitlist until that therapist has an opening in their schedule.

Of course, given I haven’t started, I cannot provide personal feedback, however I’d say they are accommodating. I received an email to say my sessions with Heidi would be on Mondays at 3.45pm in-person, in Chippenham. Now I had a little panic when I received this because Mondays are now choir days, and I wasn’t willing to pick between to two. But a simple email to Heidi allowed me to arrange that my sessions would be online, via Microsoft Teams, so I can hopefully maintain both activities – which I class as red activities, meaning very high energy usage. Generally, two red activities on the same day, or even on consecutive days, is a terrible idea. But I will see how I go next week, knowing that worst case scenario is that I try and make choir on a Thursday morning instead.

I’ve digressed, but Olive Branch sessions are £15 per session which I think is quite low cost given I know how much private therapy can cost. However, for some I know £15 a week is also quite a stretch, given I know I will need to be much more frugal to maintain this weekly cost. However, for me this is an essential health cost as I haven’t been able to reduce my pregabalin since the end of summer due to a lack of MH support. So having this in place will give me the security I need to try reducing this again.

It’s worth seeing if there are affordable counselling services near you, where therapists volunteer their time to provide these sessions at as low a cost as possible. There is always the back up of accessing low-cost therapy through MIND, where the cost of sessions is £20, with an additional £20 fee for your initial assessment.

Shout

https://giveusashout.org

Text: “Shout” to 85258

Shout is confidential and free text line that is open 24/7 for anyone struggling to cope. Simply text “Shout” to 85258 and a trained volunteer will be in touch to support you, day or night. This service also doesn’t appear on your phone bills, ensuring absolute confidentiality. Texts are limited to 160 characters, and you can stop receiving messages by texting “STOP” to the same number. The only time confidentiality can be broken is if they have concern for your safety, which is pretty standard of all MH services.

Shout’s aim is to provide users with immediate support, helping to bring users to a calmer mindset, before working to formulate a plan with users to support themselves. This is a service I’ve not used, but I believe its beneficial to share as I’ve known people in dark places who just cannot function in a phone call at that point.

Second Step – Southwest

https://second-step.co.uk

Second Step was set up by a group of social workers and community psychiatric nurses who recognised a need for mental health services for the homeless and vulnerable, people who would end up in hospital for their mental health because they had nowhere else to go. They work to support people with their mental health in their own homes, with a focus on enabling clients to live more independently, while taking trauma, adversity and psychological issues into account.

Their services include helping those who are homeless or at risk of becoming homeless find suitable accommodation. Their recovery and mental health services see them working with NHS run mental health services to help people find “hope and courage to take the next step in their recovery.” They run community programmes which include supporting people to move out of residential or supported housing to live independently, supporting people to get back into the community after receiving in-patient care, activities to motivate users, crisis prevention safe spaces and much more. In a nutshell, the services available are far reaching and undoubtedly needed in the current economic climate for many.

Papyrus HOPEline – For under 35s

https://www.papyrus-uk.org/

Call: 0800 068 4141      Text: 88247      Email: pat@papyrus-uk.org

Papyrus is a charity set up by a group of bereaved parents who each lost children to suicide. Their core goal is to prevent suicide in young people, and they have bases across the UK.

Their HOPELINE247 is a suicide prevention helpline which is provided by trained suicide prevention advisers, working with young people, or those concerned about a young person. HOPELINE247 is a free and confidential call, text or email service, active every day of the year.

Alongside HOPELINE247, they also offer education and training to anyone, with the aim of creating suicide safe communities.

Cruse

https://cruse.org.uk

Call: 0808 808 1677

Cruse offers bereavement support across England, Wales and Northern Ireland. They have a specific helpline, manned by volunteers who are trained in all types of bereavement, alongside local support services.

The support services include Understanding Your Bereavement group sessions, where they provide an overview of ‘grief models’ to help people understand their feelings, 1-2-1 sessions and peer support group sessions. They are upfront about any waitlists in place when someone makes contact for their support services, while their helpline is operational 9.30am – 5pm 4 days a week, Tuesdays its open 1pm – 8pm and closed on weekends.

Nilaari

https://nilaari.co.uk

Nilaari is a black-led charity based out of Bristol, offering mental health support to adults from racialised communities across southwest UK. A few services are available which are sensitive to different cultures and individual needs, serving all black and minoritised communities.

They provide confidential and free 1-2-1 talking therapy for a set number of sessions, 1-2-1 practical support and group therapy sessions. Alongside this, they also provide training to organisations to help them have a better understanding of cultural diversity, as well as collaborating with universities to offer therapy to their students of colour.

The list and information I’ve provided above barely scratches the surface when it comes to mental health support, but I wanted to provide and overview of the services I’ve used, or come across, to give a broader picture as to what services exist and may well exist in your area or country. Alongside these, I found multiple women’s mental health and housing organisations, men’s mental health and housing organisations and child specific services, including for bereavement support. I also know that in the moment, it’s unlikely anyone is in a headspace to spend time on google looking for the right service for them, but hopefully the services I’ve listed above will be a good starting place and a safe space to call or text in the moment.

It’s also worth looking at community noticeboards local to you, often found in supermarkets, community centres and your local GP surgeries. I found noticeboards near me often hold useful leaflets for local services, along with a calendar which highlights local activity and service groups and the days and times they operate, along with locations. For instance, I didn’t know we had a Women’s Shed near me, or specific craft groups and choirs. These are what led me to discovering the Rock Choir, simply because I saw another choir listed on a noticeboard and decided to check on google.

Please do share this or save it for future reference. Perhaps there’s someone you know who could benefit from one of these services, or maybe you can benefit from them, either way the aim is to help others know more about additional services that may be available near you that aren’t so well-known or advertised. I didn’t know many of the organisations above existed before I was in crisis, and that’s a gap I hope this blog can help close for someone else.

Today is for Eric.

I was going to write a little update about my health, which is largely to say it’s taken a decline. While most days my Hemicrania and occipital neuralgia pain is a little more controllable with the implant, my Functional Neurological Disorder (FND) is worse, as is my Chronic Fatigue Syndrome (ME/CFS). 

Instead I woke to the news that Eric Hauser, a treasured soul from the vaccine injured community, has lost his life as a result of his severe ME. Eric suffered on a level most people, myself included, simply cannot comprehend. 

Whether they’re a part of UKCVFamily, or a part of the global vaccine injured and bereaved family, every life lost as a result of the vaccines weighs heavy on the hearts and souls of everyone else in this community.

Eric advocated and fought valiantly, not just for himself but more so for others affected. He selflessly used the little energy he had available to bring joy and laughter to a community that truly needed it, while he and his partner Eva did everything they could think of to fight for a community that is grossly misunderstood.

So today I won’t talk about my health declining, because today I’m making space for gratitude for people like Eric existing in such a troubled, murky world, while I hold a place in heart for everyone who is hurting from what can only be described as a monumental loss, especially for Eva.

This will undoubtedly remind others in the community of their own frailty and mortality, and that of the friends and family they’ve made through this challenging journey. Check in on each other, maybe you haven’t touched base in a while (like me) and right now I can’t think of a better way to honour Eric than pouring a little love into the community he tried so hard for.

Today I’m going to put together the mental health resources post I promised, knowing how many will be impacted by the loss of Eric. It’s just a small act I can do to pour some love into the community who welcomed me, supported me and loved me when I did, and do, feel so lost within my own vaccine injury.

Access to Life.

Today marked the end of my sessions with Natalie at Access Community Mental Health. This is a MH service which offers talking therapy for 6 weekly sessions and I think it’s important to share because I genuinely didn’t know it existed until I was at a point of asking to be sectioned. 

I started with Natalie at the beginning of December, and I’m in a much healthier and safer place now. Just having that weekly outlet, but also someone who makes you feel like you’re talking to a friend; Sharing relatable experiences along with helping me reframe my mindset in many areas. 

During our closing questionnaire, I gave a 1-7 rating for various areas of my life. We also compared them to my first answers at the start and some are hugely improved. 

It’s been a big start to the year for me, and largely this is thanks to Natalie and our sessions. I’ve spent so long feeling isolated, inadequate and restricted, and truthfully there are probably still areas that I feel this.

I ended 2025 feeling so lonely and like I just couldn’t enjoy the fun things everyone else did over the festive period. So on NYE, I wrote a list of things I want to do this year and I really have hit the ground running. 

Last week I had a taster session at the local rock choir, and I immediately signed up for the rest of the term. It was exhausting but exhilarating, I felt so much joy and lightness that I knew I would gladly navigate my diary and energy around making this achievable for me to do. 

I also spoke to all my friends about this list and my goals for this year and was met with the greatest reactions from them all – they all added plans and ideas to my list! 

Another thing on my list was that I want to generate an income, so this week I’ve signed up for a course to learn how to do something. If it works out to be manageable, you’ll know!! 

This is all only possible by reframing my mindset. It’s easy to get stuck in the thought pattern of “I can’t do that”. Or worse, chastising myself for not being able to do things I could before. I’ve spent 4.5 years in that thought pattern and all it does it make you focus on the unachievable. Instead my current mindset is “but I could do that” or “if I adjusted that it would make that manageable”. Like choir – I have to make adjustments to make it manageable.

So instead of me being sick of all the rest I have to have and how few things I can do within those rest periods that don’t drain my energy, I’m looking at things I can do while still resting. Things that I can make achievable so I can bring more life into my little world without upsetting the precariously balanced spinning plates that are my health. 

I’m sad my sessions with Natalie are over, but I’m beyond grateful to have been paired with her to get me out of what truly was my darkest hole yet. I never thought I’d find a therapist that I gelled with as much as Lee, but I’m grateful that fear proved to be unfounded. 

Access Community Mental Health is a free service, available to those in need and they’ll work with you during your sessions to improve areas of your life that are causing the most difficulty for you. I wish more people know about these services before they hit rock bottom, but I hope my little post here helps in some way to achieve that. 

For now, it’s back to resting, because I might have hit 2026 with a little too much gusto. But for once it’s a content rest, knowing I have a great year ahead of me, despite my limitations. 

Who am I?

Monday I had a call with Natalie from Access Community Mental Health. They’re just one of the services I’ve had to sign up to in order to get MH support that my doctors won’t provide. However, Natalie is lovely and even though we talk about crappy things, we also laugh and share book recommendations or talk about silly things as well. 

But Monday I tried explaining how I’m currently feeling, not just around my health but also around when my MH is feeling quite bad. My answer was:

“I feel like I’m living someone else’s life, with someone else’s feelings, wondering when and how I can get back to my own script.” 

When I saw the MH team at A&E, they wrote that I have dissociative tendencies, which, given my above statement, is pretty accurate. But it’s been going around my head and so I felt it was probably something worth trying to write about. 

Imposter syndrome is intense for many people, especially sick and disabled people. Our internalised ableism can be overwhelming at times. I’m forever thinking I’m not disabled enough for that level of support. The truth is that if you just looked at me, I don’t look like I’m disabled or sick. Well, maybe sometimes I look sick, my face displays my pain quite often. But it’s not until I start walking or I explain my health that it becomes apparent that I am in fact quite unwell and pretty disabled too. 

Yet, even after four and a half years, when I start walking it’s still a shock when I take that first step and realise my legs don’t work quite like they’re supposed to or I’m wobbly. I get out my car, take a step and think “oh shit, I forgot about that”. Every. Single. Time. 

My MH doesn’t feel like it’s my mental health. When I have a breakdown (I had a very cathartic one last Tuesday) it doesn’t feel like it’s me breaking down, again it’s like I’m in someone else’s mind. Maybe that’s a coping mechanism, maybe it’s a learned behaviour. The constant internal analysis of asking if I’m disabled enough or sick enough, or unstable enough, simply because when you’re sick and disabled it’s all you get asked when you’re asking for support. Doctors, consultants and DWP assessors constantly question your disability or illness, so is it really such a shock that I ask myself the same things?

The worst part is that DWP assessors have a reputation for being harsh, unsympathetic and sometimes even cruel in their judgement. Yet, it’s the one place that hasn’t dismissed my disability or illness level. In fact, they’re generally shocked that I manage to do anything at all, particularly driving (but we all know I worked very hard to regain that part of my independence). 

But I think the reason I doubt myself is because it’s been almost impossible for me to get help in many areas. I’ve been trying to get MH support from my GP since May, but it’s always a closed door. Now I have support from Access to Community Mental Health, but that’s only 6 weekly sessions. I’m on a waitlist for a counselling service local to me, it’s a 3 month wait. I referred myself to MIND in October and I’m currently chasing them because I haven’t had any acknowledgment of my referral and I’ve had an initial assessment with Turning Point to help me come off my pregabalin. Again, the doctors prescribed the medication but don’t have the facilities to support patients who suffer withdrawals when trying to come off it. It’s a wonder why these charities are so strained! 

I’m tired of the fighting and currently I’m doing as much as I can cope with. On top of chasing these referrals, I have a FND specialist referral, another pain clinic referral and I’m doing lots of daily practices to keep my MH stable while I wait for the support from these charities. I use my phone less and instead have a mindfulness workbook of simple puzzles, I’m meditating again which is really nice, I’m using muscle testing to identify and clear trapped emotions every night before bed and I’m also using tapping both morning and night. They all help, but it’s hard work keeping up and they use most of my energy each day. But I’d really like to keep myself in a more stable place and to maintain being able to sleep better so I will keep going because I don’t want to feel crappy! 

I just wonder at what point I’ll start feeling like I’m in my own body and whether that will help or hinder my progress. When will I stop questioning my own health and disability? When will I feel like I’m me again?

Perhaps the answer is that in time, and with patience and grace, my body and mind will feel safe enough to stop disassociating. Perhaps the answer is to stop trying to run before I can walk and stop listening to my mind when she’s being a bit of a bitch.

Never end on a bad set.

I often write about the things I’m struggling with, largely because this is when I need to write the most. It’s cathartic; if I can get my thoughts out of my head and onto the notes in my phone then they appear, and feel, far less insurmountable. It’s also because, in general, each day is a struggle in one way or another. That’s the trouble with chronic illnesses and dynamic disability – if it’s not one thing it’s another, and something I could do yesterday my body won’t allow today. 

However, I’m coming to write about good things. It’s no shock to say I’ve been struggling a lot lately, but the support I’ve received has been phenomenal and overwhelming. One such example of this support was from a friend and bloody lovely lady, Caroline, who listened to my whining without judgement and, as she does, she knew the exact combination that would help me in a specific area: sleep. 

My sleep has been tragically awful, non-restorative and continuously disrupted by my own body. But, a conversation, a little reading and some new tools has seen me sleep through night for most nights since Monday. For reference, I haven’t had a full night sleep in months, so it’s likely not entirely surprising that I’ve been battling with my mind and my emotions so much. 

As a consequence to the success of Caroline’s advice, I’ve managed to go out into town for a little shopping not once, but TWICE this week. I’m sure for most people reaching a shop is normal, you don’t need to think about it too much or plan it. But this is the first time since I had my adverse reaction that I have been able to do my Christmas shopping in person, rather than the very anticlimactic, yet convenient, online shopping. Imagine the last time you physically went Christmas shopping being 2020, and even then it was limited due to lock downs. 

Today’s shopping trip was particularly successful on the whole, though some experiences were disappointing. We started with our local TK Maxx, however they have crammed so much into their shop for Christmas that I kept finding myself having to reverse out of aisles because I couldn’t reach the end due to a stack of trolleys, or just someone ignorant person not acknowledging my polite request for me to squeeze past them. Some of the aisles were so tight that I’d catch something on a shelf and knock it off – though thankfully nothing breakable was damaged. 

I remembered the advice of my old training coach – never end on a bad set. So while I left TK Maxx feeling like I was an inconvenience and like I was just in everyone’s way by trying to do my own Christmas shopping, I decided I wasn’t going to end the day feeling that way. 

We got back into the car and, while initially I wanted to throw in the towel and go home in my foul mood, I decided I wasn’t done. I’d seen something I really wanted to buy for someone but they didn’t have the right size, and I knew from previous experience that the TK Maxx in Chippenham’s was much bigger and better laid out. So off we went!

What a great decision this turned out to be, not only was I able to go down any aisle without fear of getting stuck, hitting people, knocking things off the shelf or worse – getting a wheel stuck on a shelf and dragging it with me, but also everyone was so damn polite and helpful. 

“Sorry, would it be ok if I just quickly squeezed through?” 

“Of course! I’m so sorry”

Of course their apologies weren’t necessary and more often than not neither were mine – I’m working on it! But I was made to feel welcome not just by TK Maxx and their well thought out interior, but also by the other customers. 

And what a success it was, I managed to get the gift I wanted in the right size, along with some shoes, hats and a purse for me. The double bonus was Next was next door and I also managed to get myself some trousers that’ll be a bit warmer than my linen trousers. We then had a Costa and popped into M&S food next door to treat ourselves to a Cumberland pie for dinner. 

I successfully turned the day around simply because I remembered: never end on a bad set. 

The only unsuccessful part was that I’ve still not managed to find inspiration for something to get my mum to thank her for all she does for me. But otherwise my Christmas shopping is done and I’ve not had to order one thing online. 

Many people will try and convince you that getting a mobility aid is a bad thing, that it’s restrictive, that it’s giving up, or that it’s lazy (if they’re a complete prick!). What a mobility aid actually does is give someone the ability to walk further than they can without out it, to walk with less pain or more stability. For me, using my stick or my wheelchair is freedom. It’s empowering and makes the world more accessible to me (if I go to the right TK Maxx).

Today I learned that being disabled doesn’t make me an inconvenience and that, on good days, I now have the independence to be able to do something as simple as picking up a few Christmas presents and trying on clothes in person to make sure they fit. I also learned that not everywhere will make sure their store is truly accessible, but that’s ok because there will be another store, with nicer people, that does!

A life worth fighting for.

I’m not quite sure where to start with this one, but I think it’s important so I’ll give it my best shot. 

When you get sick, you assume there’s a herb or medicine that can ease the discomfort while your bodies recovers with some additional rest. If that fails, you still don’t worry because there’s a doctor available who will surely know what to do. If they don’t, then still restrain yourself from panicking, because they know the right department that can help you. 

And then there’s me, and others like me. The ones that don’t make it into the leaflets or the bus stop ads with smiling faces. The ones who no one will take responsibility for, the ones who are let down time and time again, who get gaslit or their health concerns dismissed. The ones who one department will say you’re too sick for us to help and another who will say you’re not sick enough. And I’m not just talking about healthcare services here, government services as well. 

My neurologist has repeatedly told me I’m fine, that I walk fine, that nothings wrong. But that also this is just a simple case of “these things happen” and it’s my body’s “natural response to pain”. Then, when I push for help from my neurosurgeon and he sends me to someone who does diagnose a genuine neurological condition, my neurologist writes “I feel I have reached the end of the road with Chloe”. The very short road of laughing at me during appointments, trying to tell me nothings wrong as if I’m supposed to just jump out of my chair and skip down the hall back to my old life. And not forgetting reporting I’m getting on successfully with medication I haven’t taken in 3 years and that I arrived in my wheelchair when I made damn sure I walked in so she couldn’t tell me I had a “normal gait” again. 

Then there’s the GPs themselves. The one who told me that I’d just have to “get on with it”. This was in response to the wrong CT scan being ordered by another GP, I requested for the error to be fixed which was denied, and when I asked what the hell I was supposed to do with my failing health if they can’t order the right scan that might identify why the fuck I can’t walk like a normal person. Get on with it. 

Or the GP who writes “patient came in with a walking stick?” Because the patient is disabled. “Patient discussed her post covid fatigue” Ignoring the fact the patient has a diagnosis of Chronic Fatigue syndrome. “Patient was a little tearful.” That was the clinical observation written when I called in May begging for help because I didn’t want to be here and was planning how to make that happen – in case you’re wondering, I was told that if I needed support I should call Samaritans.

I fought hard for a physio referral, I’ve had to do my own rehabilitation where it’s been denied to me. The first physio said I needed more specialised help, the specialised help said she couldn’t help me, but had a considered a commode downstairs? Not so much as an exercise sheet. For those that don’t know, I didn’t just lose the ability to walk properly, or sometimes at all, I lost all fine motor skills. Even now I struggle to cut up my food when it’s hard, like roast potatoes for instance. I couldn’t even write, but no one would help so I spent months sat in my room doing handwriting sheets, eating with chopsticks, using baoding balls and trying to knit. Even now I struggle to write a birthday card, but at least it’s legible now. 

Only this year, thanks to a lovely continence nurse, I got some things installed at home to make me safer. They then did a referral to Adult Social Services because they felt I needed more than they could provide. I’d previously tried to refer myself to social services when I had bedsores that no one would help me with, they said that because I was still under neurology, it meant I hadn’t been signed off as not getting better so they couldn’t help. With fucking bedsores. So I felt hope when the OTs did the referral, but after two assessments, the answer was that because I wasn’t permanently in my wheelchair they couldn’t provide help. Always something, right?

Don’t get me started on what happened at Southmead after my surgery either, these are just the highlights that I can recall whilst writing this. 

This isn’t just one failure, not just one case of slipping through the cracks. This is what I’ve been quietly fighting against for four years. A system that doesn’t want to help me, several in fact. I fight so fucking hard to get through the right door, and I’m either too sick or not sick enough. Or what I tell them doesn’t match what the last fuck wit wrote on my medical records.

In fact the only person I’ve seen that accurately records things and does what he says he will has been my Neurosurgeon. A man of few words, but they carry weight and he has no problem writing that my issues were caused or exacerbated following the Pfizer vaccine. But shouldn’t accurate records and actually helping your patient be the norm? Shouldn’t it be maximum one person that is negligent, not all but one? And I’ve seen a bloody lot of them. 

Then there’s the withdrawals that no one with help me with. No support, no guidance, no matter how bad it’s impacting my mental health. Please note I haven’t even discussed the financial burden of all this either, which is significant.

All this resulted in me going to A&E this weekend and asking to be sectioned for my own safety. The reality is that my health is getting worse, sure some things have improved, but then the rest has gotten worse. And I realised I don’t know what I’m fighting for anymore. My present life is fucking awful, and with no one supporting me or trying to help me better my health, I’ll only keep getting worse. Because what the hell do I know about curing neurological conditions and various other conditions, diseases and syndromes?

So why am I fighting for a future that quite frankly I don’t like the look of? It’s certainly not the future I planned for myself, it’s not even a half life. So I reached a point of giving up and I had an emergency therapy session and was told I needed to present at A&E, that should get me some help, or at least keep me safe. 

I’ve spent over 4 years fighting on my own to get through to the right door, only for it to be shut in my face time and time again. I don’t mean on my own in a sense that I haven’t had friends and family behind me the whole time, but in the sense that not one fucking doctor has been fighting with me or for me. No one seems to think that a very fit, athletic and intelligent 27 year old, who’s suddenly unable to work, socialise, exercise, do basic math or even write a fucking birthday card, is something to be concerned about. 

I spent a lot of my life feeling invisible and it’s like those feelings that I worked really hard to erase in therapy are all being validated. I feel inadequate as a human being. I can’t make my own dinner, I can’t always bath myself, sometimes I can’t even brush my teeth without being sat down and supporting my arm on something. I have to decide whether to walk Riley or have lunch, or whether I can bath and see a friend in one day. But if I have an appointment, I have to keep nearly a week clear both to have the energy for it and to recover after. 

I miss my life. The one where I could run down the stairs in time to get a delivery before they fuck off, or run errands on the way home from a long day at work, one where I’d walked with the dog before work and spent my lunch break squatting 120kg or bench pressing 70kg – both for reps. And then in the evening I’d head out for a few beers and a game of pool after cooking myself some dinner. I’d sleep a most peaceful and contented sleep, ready to repeat the same again tomorrow. I finally had my shit together after years of pretending to be someone else, to fit in with people I didn’t actually like, and then it all fell to shit in the space of two hours. 

How can it be fair? Not just that this happened, because I think I’m far from the worst person in this world, but that even after it’s happened there isn’t anyone to help me fix it? Because I’m not terminal, no one has said I can’t get better, in fact they’ve said the opposite. But they still won’t help me achieve that. 

This is quite long, so if you’ve made it this far I don’t know whether to congratulate you or send my condolences. But I’ve alluded repeatedly to how hard this journey is, I’ve spoken about how frightening my thoughts can be at times. But I don’t think I’ve ever actually sat down and written why I’m still sick, why I don’t want to keep fighting for a future that is more miserable and bleak than my current existence or just how many errors happen for me and others like me. And the sheer negligence of it all. 

I’m fucking exhausted and it’s not just from the CFS. But I had to find the energy, both mental and physical, to write down just what a shitshow this journey has been and still is. I don’t know what I hope to achieve by writing this, but it felt good to write it, even if nothing ever comes of it. 

This little life of mine…

I have a new car! With a hoist for my chair and knob on the steering to make things easier. I have to say, it’s an absolute dream to enjoy driving again. It’s not too difficult, or anywhere near as exhausting and painful as before. I feel very lucky to be where I am…which is currently sat at M&S charging my car.

I’m experiencing a lot of firsts since getting this car, and even before I collected. I’d never been to a car showroom, of new cars that is. I’ve never test driven a car that wasn’t from a private seller, or ever sniffed near a brand new vehicle. For those curious, like me, the new car smell really is a thing! 

The start of the firsts was of course visiting and test driving the car, which was pleasantly easy and the lady who managed my order was a delight! Shout out Sara at Škoda who really did go above and beyond for me. 

It wasn’t without anxiety, especially when it came to the adaptions. I’d asked the installer for a demo, or even just a video, of the strap/lifting manoeuvre for my chair as it doesn’t have handy fixtures for lifting. So I have straps and carabiners. I’ve never used a hoist or seen one in action, but what they sent me was a commercial video with clips of folk stood at the back of their cars with a controller in hand and a chair in the air. The voice over told me all about the benefits of a boot hoist and the freedom it can give me, but not actually how to operate the damn thing or how to do so safely with my chair!  When I pressed further I got told to see how I got on and contact them if I had any issues. 

So when I collected my car, which had my chair in as well from the installation, I was a bundle of anxiety in case I couldn’t work it out and had to drive to Bristol for them to show me. I got lucky, in that the set up for my chair is fairly simple and so far I haven’t done any damage. But I’ll be honest and say this anxiety shouldn’t have been necessary. 

The first trip was to Burnham 3 days later with friends and kids. It’s a very different experience driving an electric car, and it’s not the first big car I’ve driven, but it will take a little time for everything to become “normal”. 

The first charge I was full of panic. I had no idea what it would cost or how to operate all the different charge stations. Of course they all work differently, with different apps or cards, just to keep things fun! I managed it though, and felt very proud of the quick charge I did with zero issues – go me! 

I’m awaiting a home charger to be installed, but it requires some other electrics to be sorted first hence the delay. But as it turns out it’s not too much of a hassle. It currently costs around the same as my Audi to run, but likely because I’m using fast chargers so I don’t have to sit in the car for ages. Once the home charger is handled then charger will become significantly cheaper and easier for me. 

I’m slowly coming out of my flare that lasted nearly 8 weeks, if you couldn’t tell by the beach trip. I decided to really push the boat out on Thursday. For 4 years I’ve barely been able to go anywhere alone, certainly not if I needed my chair. But in general I’ve always required the support in case I get stuck, or my legs completely fail me. So Thursday I wanted to prove to myself that I could go out on my own. So instead of ordering some pads online, I drove to bath with my chair and took myself to boots to buy them in person. I won’t lie, I was full of anxiety, I cried, I had to do some tapping to prevent a panic attack when I was swamped by the crowds. BUT I did it, and I even managed to find TK Maxx for some pants. The biggest hurdle was finding a disabled bay in Southgate!

I also spent Friday afternoon with my Grandma which was a lovely visit and we enjoyed a good laugh together. 

All in all it’s been a big week. A lot of achievements, a lot of naps and very little else beyond zoning out into silly games on my phone or reading. I’m exhausted, but today I MUST deal with washing my poor neglected hair which is long overdue. I do have a new hairdryer which significantly cuts down drying time and is less painful to use, but it’s still a chore that saps my energy. 

This week I’ve a few social visits booked in the diary, but I’m also doing Reiki 1 training, courtesy of one of our lovely members at UKCVFamily. He also happens to be a dear friend.

While life is undoubtedly difficult, and I won’t pretend that I don’t have my moments of self-doubt about whether I’m cut out for all this, life is also good. For what little I can do, I am receiving a lot of joy, love and support which make this all seem bearable. The pockets of good, though fleeting and sometimes unattainable for long periods, are enough right now. 

But that’s me, the cars charged and I’m off. This little lady is feeling very grateful for lots of things, and very ungrateful that she has to bath and hair wash. But that’s life, and overall mine is looking bright and that’s all I can ever wish for. Love you all 🤍

In case it wasn’t obvious, I haven’t been writing. Genuinely, not one journal since I last posted. I feel like I’ve been at capacity, not necessarily in an ‘I can’t cope’ way, but in a I need a break way. 

I’ve taken a break from a few things recently and the outcome has been good for me. I found I was spending all my energy on appointments and fighting for help, but that’s left me with nothing to spend quality time with friends and family. The medical fatigue and PTSD means it’s just not as simple as booking and attending an appointment, it’s the impending doom and anticipation, it’s the upset to my system, my MH, sapping energy away from being able to have any meaningful experiences and joy with those I love. 

So while I’m going through Urology, with the first appointment being at the start of July, and going through the withdrawals from pregabalin, anything else is being put aside. I’m taking a sabbatical from chasing and fighting and choosing to spend that precious energy on just enjoying life where I can. 

As a result of the withdrawals I’ve also taken a step back from handling active safeguarding incidents. I’m still involved and liaising, but I’m mostly focusing on the admin side while working closely with the safeguarding lead trustee, whom it’s a pleasure to get to know better and learn so much from. It’s better for me mentally and right now a lot more manageable. 

When I was 20 or 21, I finally saw a rheumatologist who told me I’d likely be in a wheelchair by the time I reached 40. I was young, struggling immensely with joint pain and the limitations it was causing me and this sentence lit a burning fire within me. 

A wheelchair by my fourties?! I think the fuck not. 

I’d gained some weight after starting a desk job with excess time for cakes and snacks but had recently got myself a dog, Bella. So between walks and hiking my weight had shifted a little, but it wasn’t enough to stabilise the joints in the rest of my body. But I’d made friends recently with a lady who introduced me to a private gym in bath – Relentless Training – and it wasn’t long before my love for lifting began. 

It was hard work, and my body protested. At times it required the trainer to hold my hands on the lat pull down where my grip was failing or I’d use straps which felt silly for small weights but nevertheless they were necessary. Over the course of 12 weeks it all got easier, I’d dropped a significant amount of weight and gained a LOT of strength. But most importantly I was now off all pain medication for my joints and I could do the lat pull down without strapping myself in. 

What followed was a beautiful journey where I explored various activities with incredible friends. We’d run every Sunday, a 6 mile circuit which to start with I could only run in 2-3 minute bursts and my knee would desperately try to dislocate. But we pushed on and I started being able to run for longer until I was able to run with my friends for the entire route. We did tough mudders together which were fantastic fun and we’d take our dogs to coffee shops and pubs in bath to eat well earned cake and delicious foods while we plotted our next adventure. 

Soon came the time for me to move to a normal gym local to me, where I was introduced to the world of powerlifting. A world where I found my dream sport, where I excelled and learned so much more about myself and my body, pushing limits I didn’t know existed. All because my friend Cat introduced me to Emma, who introduced me to weight lifting at this gym in bath with the Steve’s. A gym where we’d push our limits while laughing, swearing and dancing in between sets. The shout of “HUSTLE” still echoes in my mind.

I thought that was me set. I thought I’d cracked the code on how to look after my body and keep my joint stabilised. I didn’t know this would happen, that a simple vaccine to protect my loved ones would fast forward me to that rheumatologists prediction.

But ever the overachiever, I got a wheelchair at 31, not 40. 

Now I have new dreams and aspirations. I know I’m still very limited and likely to be that way for some time, but I’ve been thinking about getting more independence. I’m still limited to the point of not being able to consider working, unless there’s an entrepreneur with a canny business idea that can be run from home with no energy. The reality is that I can’t wash daily, or even every other day. I’m always behind on my laundry because of fatigue, I don’t get to cook for myself daily and I can’t do much in the way of cleaning regularly. I do spend the majority of days out of bed, but I have to stay resting in bed until 11am. My life is very small and very slow, ruled by routines. I exercise Riley daily, I read, I do the safeguarding admin and most days I still have to sit doing nothing. 

But I’ve been looking into the idea of social housing to gain some independence and feel like an adult again. I don’t know how it works and need to look into it properly, while looking into how I actually manage in my own knowing that I rely on mum for all the shopping and the bulk of cooking and cleaning. But I feel for sure there must be some way I can make it work. Me, my chair and my dog. 

It’s strange the way your dreams change. Before when living with Hannah and our dogs, my dreams were to continue finding myself, to be happy and to keep gaining more wins and titles in powerlifting – maybe even some records too. Now I dream of being able to look after myself, to be self-reliant and to cook my own dinners. 

The first step I’ve taken towards gaining independence is selling my beloved A5. It was my dream car and I absolutely adored owning and driving it. But things change as we know. Driving a manual has gotten harder for me, so even short drives around town are exhausting. If you think how quickly my legs become uncontrollable when walking, and then trying to use those same legs to repeatedly change gears etc. It’s not been easy and I’ve been ignoring it.

I kept my car for various reasons, aside from the fact that I lost everything else to the vaccine, so why the hell should I lose my car too. But it was my only access to independence, even though for the first few years I’d regularly be unable to drive. But I also saw my car as my rainy day fund, the only asset I had left that I could use when I was well enough to start building a normal life again. 

Now though, that car is a hindrance. I couldn’t travel independently with my chair, so while I got the chair, I still couldn’t do a food shop on my own or take Riley somewhere different for a walk. I loathed longer drives, all the trips I have to make to Southmead were a drag.

So I sold it and 3 days later I ordered a car on the motability scheme. I’ve chosen the Škoda Enyaq estate, which is being fitted with a boot hoist next week so I can travel with my chair on my own, and I get to collect it on the 22nd. 

This period of being stuck at home without a car hasn’t been easy. I’ve been really struggling with my health the last few weeks, but despite that the feeling of claustrophobia and isolation is real.  It’s a lot like the first 3.5 years of this where I could barely get out and see friends or family, couldn’t even pop up to the shop to get out of 5 minutes. But at the same time, my health has demanded the down time, and despite all this time at home I’m still behind on laundry, washing myself, cleaning and I’ve done little cooking. I’m just not well enough for it right now. 

So that’s me. This is a long one and that’s probably because I haven’t been writing. Again it’s something I’ve not had the energy for, my head and body have been at capacity and so trying to write hasn’t felt possible. I’ll try and write more, but it’s not a promise as I have to listen to my body. If there’s one thing I’ve learned it’s that I have to pay attention to the cues I’m given and set boundaries so I can honour my bodies needs.

I’ll end with a little note on what’s really kept me going these few years. When I was competing and training I had a lovely coach, Mark. A softly spoken, gentle giant with a big heart. He once said to me “I’ll never programme something you can’t do.” Now, all these years later I still apply that to my life and all situations, I trust that the universe won’t give me more than I can handle.

Love to all 🤍

4 years: from surviving to thriving, just a little differently than before.

Today is the anniversary of my vaccine. 4 years of my life being turned upside down hasn’t been easy, but there’s are positives that have come from this journey and there’s certainly been improvements in some areas. 

For starters, I’m no longer bed bound. I require extensive amounts of rest, most days I just manage to walk Riley, but I don’t have to do that rest in bed all the time. At the start of this I was sleeping 20 out of 24 hours, only waking to take medication and eat. 

During this time I’ve been allowed to find my true self, I’ve never met her before and I’m still learning. But I’m me and that’s very comfortable in comparison to the chameleon I was before. 

I’ve met some incredible people, I’m learning everyday from them. I’m a better person because of them and what they teach me and what they give me. I don’t make friends easily, I’m a closed book and incredibly anxious around people I don’t know or don’t feel safe with. But the injured family I have made me feel safe immediately, which in itself is rare, but I immediately felt a connection with them beyond our shared vaccine injury. I’ve laughed, cried and made lots of inappropriate jokes with these people. Some of them know the darkest parts of my mind and they’ve continued to love me.

When I fall, like I had recently, the troops rallied round. They took over my volunteer responsibilities, they checked in, they sent flowers and called me to make sure I wasn’t alone, they gave advice which has seen me come back to myself, they’ve gifted experiences which have hugely benefited not just my health but my soul as well and they reminded me that I am loved and I have value. 

UKCVFamily members and volunteers represent the very best in humanity and I’m incredibly grateful to be a part of the beautiful community created out of something so ugly. 

A lot of people don’t like talking about vaccine injury and bereavement, but I know first hand just how powerful these conversations can be. Without them, I’d still be battling to want to survive this journey in isolation, believing there was no one who was experiencing what I was. Without these conversations these is no healing, there is no space for people to get the right support and the knowledge, research and resources of thousands of people on the same journey. 

Of course it’s not all roses, my legs are getting worse, my mobility too, my ability to stand and do things is dismal and there are many symptoms which severely limit me even further than the above already does. But I’m content. I never thought there was a way to be happy with your body is failing you, your in constant extreme pain and you rarely get to say yes to doing the things you love or seeing the people you love. But I truly am happy with what I’ve got right now, my little life is full of glimmers and wonderful friends, family and animals. Today I got to spend most of my day speaking with several of these people, after a lovely walk with Riley who even got a chance to be off-lead in the sun. It was a good day and I’m grateful to be here to stick my middle finger up at the vaccine. It may make life much harder, but I have a track record of not letting a challenge get in my way. 

So, to my friends and family at home and my friends and family at UKCVFamily, thank you. You heal me, help me, love me and never make me feel like I’m not enough, even on my worst days. I love you and I look forward to what we can do together in this next year of my journey.