- INTRODUCTION -

Welcome back to your monthly newsletter magazine, dedicated and produced for OOKP patients. Please consider this YOUR magazine, written for you, on topics you choose and directed by your feedback. We want to fill its pages, with all the information you wish to know regarding your OOKP journey.

This is only achievable with your input and feedback. So, please contact us giving suggestions for articles and content you wish to be included. Also, please give feedback of how we can make this newsletter better.

If you like our goals, why not become a volunteer and help us research, write and produce the magazine!

If interested, email us at

ourookpservice@gmail.com

This is our new, dedicated email address, so please enter “Newsletter” in the subject line.

Or visit our website below and click “CONTACT US”

www.ookpsupport.org

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- TABLE OF CONTENTS -

* Introduction

* Editors Update

* Pre-OOKP Surgery

* Managing Emotions & Doubts

* Post – OOKP Surgery

* Business Opportunity

* Support Group Mission

* Technology News

* Wellness Corner

* Community Corner – Your Stories

* Upcoming Events & Resources

* Contributors Praises

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EDITORS UPDATE

Hi Guys.

Welcome to issue 11 of the OOKP newsletter, VISIONARY HORIZONS.

It’s great seeing all the communication. It encourages new members to ask questions which produce answers and lets us all stay in contact and inform others of things which are happening. It’s taken some time to get to this stage, so lets keep it up.

And speaking of new members, we have two new additions to our WA group. So, welcome to Irene, you finally managed to get added to our group. Also, welcome to Chloe from Switzerland, who is now chatting on WA.

Some of you have raised issues of not being able to use the WA link to participate in the WA chat. Apologies for this. I am trying to resolve this issue. I may just have to mention the fact we have a group, then ask those who wish to join,to send us an email with the information needed, so we can add you without complications. I will consult with our communications officer, Caroline, to see how we can get this working.

I am looking at arranging another meet-up at Moorfields, to discuss how far we have come and what we can do next. I have asked Mr Perez, who is all for this, but when you attend your appointments, please raise this matter. I know Caroline and her sister will love this, as it means they can be tourists again in London. (smile)

Finally, I recently asked for feedback for the website and newsletter. Thank you to everyone who responded. It has certainly given me the enthusiasm to carry on and has given me some great ideas.

However, please don’t stop sending suggestions. It doesn’t take many issues of the newsletter, to burn through the topics I had stored in my files. I need requests for articles, tech projects, wellbeing suggestions and anything else you may need to travel your OOKP journey. I’m not a mind reader (or am I) so need you to tell me what you want.

So, with that, lets see what this months newsletter has to offer. Remember, keep chatting and keep requesting.

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PRE-OOKP SURGERY – UNDERSTANDING WHAT “BEING READY” REALLY MEANS.

Before OOKP surgery, patients are often told they’re “not quite ready yet,” or that further preparation is needed. This can feel confusing or even discouraging, especially when readiness is not clearly explained. Here, we explore what medical and emotional readiness actually means, why it matters, and how understanding it can help you feel more secure and less powerless during the waiting period.

Readiness for surgery isn’t about perfection or toughness — it’s about safety, stability, and support. Understanding this can ease frustration and help you see preparation as progress rather than delay.

Key elements of readiness include:

• Physical Stability. Doctors must ensure your body is in the best possible condition to support healing and long-term success. This involves conducting tests, which may take some time. Only when your consultant is happy your body is able to deal with the harsh realities of surgery, will they continue.

• Emotional Preparedness. Being aware of expectations, fears, and coping strategies helps reduce distress during recovery. The more relaxed you are, the more effective your recovery. Use the articles in our newsletters to learn relaxation techniques. They’re designed and included to help prepare you for surgery.

• Support Systems. Having people, services, and routines in place makes recovery safer and more manageable. Never be afraid to ask for support, it curbs fears and increases confidence. Our support service was created to help those facing OOKP surgery; and has been developed from the experience of those who’ve already been there. Please, don’t face your journey alone, use our service.

• Informed Understanding. Knowing what surgery involves and what recovery may look like builds confidence. Ask your medical team to explain or answer any questions you may have. Our service is there to provide emotional support, which is rarely available from the medical team. We can answer questions arising from negative feelings, fears or anxieties. The more prepared you are, the less stressful your surgery. If you have a question, use our contact details to obtain the answers.

• Flexibility.  Readiness includes being able to adapt if plans change. If you’re aware of what changes can occur, you can prepare a plan of action. Simply contact us with your doubts and one of our members will give alternatives you can use, to keep you calm and relaxed. Adapting to changes requires knowledge and our members have the experience to help with this.

Being “ready” doesn’t mean being fearless — it means being supported, informed, and prepared enough to move forward safely. It means having a plan of action for each scenario. This only occurs by asking others of their experiences and how they managed the situation. Once you have this, you can take action which suits your needs. AND, if you encounter an issue you’re not prepared for, we’re only a phone call away to help you prepare a plan or guide you through the situation, using our own life skills, obtained through undergoing the surgery ourselfes.

Remember, you’re not alone

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MANAGING EMOTIONS & DOUBTS – WHEN CONFIDENCE WAVERS WITHOUT WARNING.

Many OOKP patients expect confidence to gradually increase as they move forward. Instead, confidence can suddenly dip, even after periods of feeling strong and capable. This section explains why these unexpected drops happen and how to respond without self-judgment or panic.

Confidence isn’t a straight line. Understanding its natural fluctuations can prevent unnecessary worry and help you respond with compassion rather than frustration.

Ways to manage wavering confidence include:

• Recognising Emotional Fatigue. Confidence often dips when emotional energy is low, not because ability has decreased. Health is not just restricted to physical, it involves mental and emotional. Follow the techniques offered in the sections of our newsletters, allowing you to increase overall health, preventing emotional fatigue and helping maintain confidence.

• Separating Feelings from Facts. You must realise, feeling unsure doesn’t mean you’re unsafe or failing. Generally, uncertainty develops from lack of knowledge or skill, leading to a dip in confidence. Whenever you experience such emotions; relax, assess your situation, discover what skills and knowledge are required (talking to peers or our members can help) then obtain the missing attributes. Learning is often simple, but it provides you with tools to combat lack of confidence in the future.

• Returning to Familiar Anchors.  Routine, grounding techniques, and trusted voices help stabilise confidence. Develop routines by splitting goals into more manageable tasks, as discussed in previous newsletters. Ask peers for tips and tricks they use to manage their confidence. We can provide answers to questions you feel are affecting your confidence. This is the mission of the OOKP support service, to help members, wherever they are on their journey.

• AvoidingOver-Analysis. Excessive self-monitoring can magnify temporary doubts. When in doubt, establish what’s causing the doubt. Ask peers for techniques for dealing with these doubts. Create a list of tasks to eliminate the doubt, so confidence can return. It’s not a race, it’s a matter of discovering and implementing skills; now and in the future; to reduce and eliminate doubts, so confidence can grow. Remember, it’s difficult alone, but achievable with the help of others, so just ask.

• Speaking It Aloud. Naming uncertainty often reduces its intensity. Tell yourself what you’re having problems with. Once you address a problem, you discover a solution. If you’re unable to solve the matter yourself, ask a peer. Our members have experience of dealing with many issues, they may just have the solution you’re searching for, but, we can only help if you ask.

It’s important to understand, confidence doesn’t disappear — it simply pauses, generally due to you not having the necessary skills or knowledge. Therefore, by learning the skills, you have the tools to develop your confidence. With care, development and reassurance, it usually returns quietly and naturally.

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POST-OOKP SURGERY- UNDERSTANDING EMOTIONAL SENSITIVITY DURING RECOVERY.

After OOKP surgery, some patients notice they feel more emotionally sensitive than expected. Small events may feel overwhelming, and reactions may feel stronger than before. Here, we explain why emotional sensitivity is common after major medical procedures and how to manage it gently and safely.

Emotional sensitivity isn’t a setback — it’s often a sign the nervous system is adjusting after prolonged stress and anticipation. Once you understand this, you can discover techniques to help repair and strengthen your nervous system, to help in the future.

Helpful ways to manage this phase include:

• Reducing Emotional Overload. It’s important to limit difficult conversations or intense situations during early recovery. Allow your body and mind to accept your situation, before explaining it to others. Ask peers for techniques to achieve acceptance and take the time necessary to build your resilience. It’s not failure, its developing coping strategies.

• Allowing Feelings Without Judgement. Emotions don’t need fixing for them to pass. They need understanding and acceptance. We learn by experiencing the emotion, so allow this to happen. Again, this isn’t a race, it’s being aware of your feelings, strengths, weaknesses and abilities, then creating a routine which addresses and develops positive strategies. Your body has undergone some tough situations, allow it to heal.

• Balancing Stimulation and Rest. Emotional processing requires energy and recovery time. Don’t deny your body this. Our members suggest keeping a journal, allowing you to monitor progress. You’ll find, by assessing your journey, you discover what assistance may be required, giving you an indication of what skills or knowledge may be needed to further your development. Once you’re aware of an issue, creating tasks to achieve your goal becomes much easier.

• Communicating Your Needs Clearly. It’s important to let others know when you need quiet or support. It’s impossible to read peoples minds, so unless you make people aware, they can’t help with your recovery. Remember, we can help. if you have questions, simply email us and we’ll be only too willing to assist.

• Seeking Reassurance When Needed. Professional or peer reassurance helps normalise the experience. Your consultant and medical team can answer medical questions and our OOKP support service can answer emotional and development questions. Never feel you have to manage alone. There’s a whole host of help available, all you need do is ask.

As your recovery progresses, emotional sensitivity often settles. Being gentle with yourself during this phase supports long-term emotional balance. Give yourself time and allow recovery to occur, step by step. Trying to force recovery will only create problems in the future.

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- BUSINESS OPPORTUNITY -

If you wish to learn a new vocation, I offer a course, teaching individuals how to become a “Blind Awareness Trainer,” where you train front-line staff, to correctly assist blind and visually impaired customers.

This is my vocation, where earnings are considerable, it provides fun and interesting social opportunities and I increase the number of people who can offer assistance to visually impaired individuals.

If you’re interested, send an email with “TRAINING” in the subject line, for more details

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- THE SUPPORT GROUP MISSION -

Our mission, is to empower people facing OOKP (“tooth‐in‐eye”) surgery and their families, by providing clear and accessible information, practical help and a caring community. We exist, to relieve the stress and isolation of this rare procedure, by advancing patients’ health and well‐being, through education and support. In practice, we aim to give everyone affected by OOKP, the knowledge, tools and emotional support they need to feel informed and confident about their care. This means offering up‑to‑date guidance on the emotions of surgery and follow‑up support, building peer networks to share experiences, involving families in the process, and partnering with eye clinics and charities, to deliver the best possible outcomes. This can only be achieved with YOUR help!

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TECHNOLOGY NEWS – CHOOSING TECHNOLOGY WHICH MATCHES YOUR ENERGY LEVELS.

Technology can be empowering, but it can also become draining if it demands too much attention or effort. Here, we focus on choosing and using technology in ways that respect your energy levels, particularly during recovery or periods of fatigue.

Technology should work with you, not compete for your energy. Understanding this helps prevent frustration and burnout. It also allows you to develop your abilities, leading to an increased familiarity of what’s available for the tasks you wish to achieve.

Consider these principles when using technology:

• Learn Low-Effort Tools First. Prioritise tools that respond quickly and clearly to voice commands. The more familiar you become with what can be achieved with voice commands, the more encouraged you’ll become in trying more complex and accessible technology.

• Avoid Over-Complication. As you begin using accessible technology, you’ll find, fewer apps used well are better than many used inconsistently. Many apps can achieve multiple tasks. Therefore, learn to use these and you reduce the overwhelming number of apps stored on your phone or computer. Use the tutorial videos on our website, to give you insight as to what’s useful to those with limited sight.

• Match Tasks to Energy. Use technology for demanding tasks when energy is higher; rely on audio or automation when energy is low. Being able to ask Google for example questions, is much easier than having to type text. Once you begin using audio technology, you’ll discover how much faster and easier it is to achieve tasks. However, learn to use each app well, before progressing to a different app.

• Turn Off Non-Essential Notifications. Reducing interruptions supports focus and calm. Notifications can be helpful, but can also be distracting. Take time to check your notification settings and turn off those of little importance. Very quickly you’ll discover, just how much time you regain and how many notifications are unnecessary. Do it now! Sort your notifications! It may be the most productive task you’ve accomplished this year. And, you can always turn a notification back on if you find it’s needed.

• Review Regularly. Be aware, your needs may change over time; technology choices should change too. Never be afraid to delete apps you rarely use. Not only does it make navigating phones or computers easier, it also saves memory and speeds up access. If an app is no longer needed, delete it. Keep your screens clear of junk. If you require it in the future, it can always be installed again.

Choosing energy-friendly technology supports independence without increasing fatigue or stress. Concentrate your energy on recovery, not using technology.

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WELLNESS CORNER – LETTING GO OF THE PRESSURE TO “STAY POSITIVE”.

Many patients feel pressure to remain positive throughout their medical journey, even when they feel tired, scared, or discouraged. This section explores why constant positivity can be exhausting, and how allowing a full range of emotions actually supports resilience and healing.

You don’t need to feel positive to be coping well. Emotional honesty is often far healthier than forced optimism.

Healthier approaches include:

• Allowing Mixed Emotions. Hope and fear can exist together without conflict.

• Releasing Emotional Performance. You don’t owe positivity to anyone.

• Finding Safe Spaces for Honesty. Peer support and counselling provide places to speak freely.

• Replacing Positivity with Kindness. Self-kindness is more sustainable than constant optimism.

• Trusting Emotional Flow. Emotions move naturally when not suppressed.

Letting go of pressure creates emotional space. In that space, genuine resilience and peace can grow.

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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES

After asking members to give an account of their OOKP journey, I’ve received quite a number of responses. Therefore, I think what I will be doing in future, will be continuing with my epic story in one months issue, then giving you a break, by publishing a members story in the following issue.

As my story continued last month, we’re going to here your communications officer’s story this month. This is the story of Caroline’s journey, how she came to undergo OOKP and how this has affected her life.

Thanks Caroline. This is an amazing story and will hopefully help others come to terms with their own OOKP journey. It’s not the abilities we have or don’t have, it’s how we manage them which makes the difference between having a “normal” life and having a GREAT life.

So, I’m sure you all wish to join me in thanking Caroline (and her guide-dog David) in giving us the motivation to embrace life and enjoy everything we have.

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- UPCOMING EVENTS & RESOURCES -

As we develop the support service, website, newsletter magazine and WhatsApp group, we want to produce podcasts, webinars, workshops, fundraising events and other accessible materials members can access.

If you have news to share, please let us know by email, and we’ll advertise it here, for all to access and join. The more we can inform people, the more this service will grow. Lets make it a service to be respected, one which others aim to imitate for their group.

Keep communicating with us and others, it’s the only way we learn and progress, to make life easier.

So come on all you budding bakers, crafters and sales gurus, lets get some events planned to raise money. Maybe, we can raise enough money to have a Christmas trip to London, to see a show, after we ‘ve discussed our progress.

“Sound good? Only we can make it happen”

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Website

www.ookpsupport.org

Phone

07483 880268

E-Mail

This is our new, dedicated email address.

ourookpservice@gmail.com

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CONTRIBUTORS PRAISES

A big thank you to the following, for helping to produce this monthly newsletter and assisting with the services.

Martin Jones, Rotherham, Editor

Caroline Williams, Newcastle, Communications Officer

Irene Worgan, new WA member

Chloe Kolly, new WA member

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