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.