Tag Archives: positive attitude

How Brain Disease Promised Me Quality Life Opportunities

How Brain Disease Promised Me Quality Life Opportunities text on a dark blue background. An image of blank wooden tiles with 4 spelling the world LIFE.
How Brain Disease Promised Me Quality Life Opportunities

I’ve been thinking alot about life recently. It’s been 5 years since I was diagnosed with a an atypical presentation of a rare brain disease; Idiopathic Intracranial Hypertension or IIH. It’s also been 3 years since I was medically dismissed from my teaching career and I never dreamt back then that I’d still be mostly bedbound and so sick after 6 major surgeries.

But, how could I have known 5 years ago that this disease would have such unforgiving consequences for impact myself, let alone Joel and the boys? We never considered that this disease would mean reconsidering our dreams, hopes and plans for life together.

On the flipside, I’ve found silver linings amongst this shizz! I’ve found new ways to connect with the world, my family and my own wellbeing and built an even better relationship with Joel and the boys – who’d have thought that could happen! I’d never have been able to see myself not teaching but I’ve realised that I do have other talents and other roles to fill.

So in spite of my illness turning our world upside down and inside out, I’ve realised that my brain disease has oddly promised me new opportunities. I know that sounds crazy, even for a self confessed optimist, so let me explain my how I got to this conclusion.

How do you live your life?

  • Are you a dreamer –  living in a fantasy world with unrealistic ideals?
  • Are you a planner – always being organised and making lists?
  • Are you a doer – filling every waking moment and being very efficient?
  • Are you an optimist – being confident that there’s always a silver lining?
  • Are you a realist – able to accept and deal with the situation you’re in?
  • Are you an idealist – sure that happiness is a state of mind; despite the practicalities?
  • Are you impulsive – acting rashly and taking risks without thinking it through?
  • Are you a believer – having faith in what you do or trusting that your thing is truth?

I’ve always been an optimistic planner with an organised life. Everything had a place and everyone knew the systems. I knew was meant to teach aged 5. I taught my brother in the school holidays, when he’d much rather have played cars. I planned my life as a teacher and when I got there, I continued to live, walk and dream in teacher mode for 15 years.

Joel and I met at college and we took our time getting to know each other. I found his spontaneous nature intriguing as it was the total opposite to my pragmatism. But we had a shared sense of humour and moral standing and eventually became more than friends.

Girl with medium length, blond hair making a disgusted expression

I’d describe Joel as a realistic dreamer. He adapts to every situation and gets a job done but then he’ll fantasise over idealistic homes and awesome guitars. He dreams of not having to work ever again, so he can paint and play music all day and maybe study for fun!

One of the games he plays with the boys is ‘lottery dreams’ which is pretty self explanatory. They’ve eyed up many mansions, fast cars and had myriad wild dreams. I love that Joel has always encouraged them to delve into their imaginations as playing this game’s just not my bag. Well, it wasn’t!

But then I got brain disease and my thought process changed and as time went on I knew I had to reevaluate my life plan. I had to learn to be more impulsive and grab the opportunities to live on my rare better days. I had to learn to stop doing and even how to rest; in fact I’m still learning that. But I had to get real and accept this was my life.

Questioning My Purpose

 A photograph of blue sky and mountains in the background. In the foreground is a grassy hill with a signpost saying 'why' and a ?
Why Am I Here?

Accepting this life has been a huge deal! When I became ill I thought I’d be back in the classroom after a change of migraine meds. But that didn’t happen, I was left undiagnosed for months. When I was diagnosed, I was told treatment would be a long process but I thought I’d be back teaching after a few brain surgeries. Just like that, yep really!

I was angry about this disease for ages and had a side order of guilt and despair. Quality opportunities for me were as elusive as the hope of being pain free. I wasn’t clear what my role was anymore and all that I knew was fading; I had no idea where the end point was!

It took time to sink in that ‘long’ in this case meant marathon long; life changing long. It made me question my role and my sense of purpose was destroyed. It didn’t look anything like the life I’d planned and I had no backup option. I was a mum, wife and teacher. Brain disease had pulled the rug out from under me and messed up our lives.

Living In The Shadows

A single tall and spiky green Cactus Stem
The Grieving Process Cactus

I got lost in a desert of all consuming pain and hadn’t noticed the grieving process cactus spike I’d trodden on. I ways keeling over, dehydrated, unaware that I just had to wait for the cactus to bear fruit for the sweet syrupy nectar of a quality life. I coulhdn’t even feel that cactus back then. I could only see what I thought was the fix; surgery. Read my story here.

I was living in the shadows, in danger of letting this rare condition make a total eclipse of my life. The Black Dog was snarling and snapping at my heels every day so I needed to tighten the leash. I realised that I was being sucked into a vast black hole and I couldn’t hold on much longer. I felt like I’d been left to rot but knew I couldn’t let go of the edge.

I realised I had to weigh up the quality of life I had with one of taking risks and grasping all the opportunities I could. I wouldn’t let myself succumb to the darkness so my GP sorted urgent support from a counsellor. I felt like someone had my hands and wouldn’t let go!

The counsellor pointed out the cactus spike that was stuck in my shoe the whole time! I got hold of it and let myself start the grieving process for life pre brain disease. I let my inner mid-tantrum toddler out. I needed to be heard to began to accept the situation I was in.

The grief and anger I felt meant I was starting out on an equally long journey to heal my mental pain. Joel and the boys mattered too much for me to let go so I worked out the etchings of a plan with my first counsellor and slowly I began to rise.

A Determined Woman Will Always Rise

"And Still Like Dust I Rise" Maya Angelou quote on a sunset background with a silhouette of a tree and an African elephant with a man riding it, lifting its trunk.

As I began to resurface I knew I needed more to think about than watching TV and eating. I realised I had more resources than I thought and started to use those I knew I already had. Being Mummy, Wife, Teacher and Cook was enough to still feel needed. It was a start.

When my counselling sessions finished I was in a better place mentally but physically my health worsened. I joined online support groups and found myself helping others in similar situations. I made some genuine friends but I was putting too much energy into helping those who didn’t give anything back.

I guess my nature is to nurture and I enjoyed shining some light into their day. It was a distraction from my pain too but I caught myself checking my phone every 5 minutes as it was my only connection to the outside world. This wasn’t healthy and I lost sight of shining the light on myself. I needed something more than this but I was still lost.

Then one day I was reminded that I’d been going to silversmithing workshops for years before I was diagnosed. I’d loved every minute in that workshop and my toolbox was just sitting there waiting patiently. It was time for me to rise up for myself again.

Reconnecting With The World

They say creativity can transform lives. It’s known that well-being and self worth can be improved through music, craft and art. Creative therapy involves expression beyond words. However, I’d never considered myself to be creative until I picked up those pliers and the sheet of silver. I thought that this might be the perfect soul healer for me.

I taught myself to make beaded jewellery as I couldn’t safely work with the silversmith’s tools. It was a wonderful distraction from the pain and boredom. My friends wanted to support me and I started getting orders. Soon after, I realised this thing might have potential and opened my Etsy Shop ‘The Paprika Jewellery‘.

Paprika Jewellery & Accessories Logo with 3 handrawn red chilli peppers.
Paprika Jewellery & Accessories

Joel’s recently told me that although he was inspired by my focus he’d been concerned by inability to dream. He thought I’d struggle when the day came to retire. Ok, so I didn’t retire but I’m so glad he’d bought those silversmith workshops for me that birthday.

My first sale to someone I didn’t know was such a high. Really I had no idea how to run a business, but it was an epic distraction. I took it at my own pace and any sale was a bonus back then. I didn’t realise it at the time but I’d found a sense of purpose again.

As my self esteem improved I decided to start a blog to help me process everything that Brain Disease threw at us. I was embracing the grieving process now. My blog focussed on raising awareness of my story, IIH, and challenge the misconceptions of migraine.

People loved to hear about my journey and my blog engaged others affected by IIH. I was sporadic with my writing as it was such hard work for my brain. It still is but don’t tell anyone! Yet again I was helping others but I’d found my own sense of purpose this time.

I took a total break from everything in 2018, as I had 3 surgeries. I really needed that rest and I focused entirely on being with my family. By now I’d recognised the importance of my role as a wife and mother so I took this seriously. I realised how lucky I was to be at home every day so that when the kids and Joel came home, I could just listen to them.

If I was teaching I wouldn’t have had this opportunity so I embraced it. I’ve become the family facilitator. I’ve been able to support the kids learning and build a stronger family bond than I could have done in my old life. Now I celebrate the little things too.

Taking The Opportunities

Since recovering from my surgeries I’ve been building up my energy whilst learning to pace myself. But there’s so much I want to do right now so I’m practising matching the energy I have with the energy I need. I’m ready to grab every opportunity and achieve all I can.

I still spend most days in my bedroom as going downstairs is enough for a wipe out. I can use the opportunity to write, make jewellery and rest so I can make the most of the better days, doing what matters most; being with my family (maybe even going out) and seeing friends . I still crash afterwards but it’s worth it to be with those who matter most!

I’m focusing on my new jewellery collection and the relaunch of my shop at the moment. I’ve putting into practice the things I’ve learnt about business when I was resting. I’m excited to develop my vision of writing and creating jewellery from positive themes.

Yellow banner with a sunset image with silhouettes of trees in Sussex countryside. With Paprika Jewellery & Accessories written in the sky. Next to the image it says ‘Luxury Jewellery & Accessories from and for the souls, positivity for you now and hope for a vibrant future.
Making Jewellery and Accessories to share love, hope and positivity

The potential my writing has to empower women was a key factor in my decision to create gifts or treats which bring hope for the future. It’s a bigger task than I’d expected as I’m also giving my whole shop a makeover. I pushed myself at first but realised it was too much. So I’m practising balancing work and wellbeing to achieve my goals without overwhelm.

Whilst starting this new chapter, I was approached to write for Teva Pharmaceutical’s ‘Life Effects’ Patient support. It feels amazing to be sought out to blog alongside some amazing advocates, let alone getting paid for it (boom)! I’ll be writing a blog every 2 months for them but they my health comes first, it’s slap bang in the contract so I’ll pace myself!

My bio photograph for the Teva Pharmaceutical Life Effects Patient Support site in a instant photo style frame. I’m wearing red sunglasses with wavy hair pinned back, against a back drop of evergreen shrubbery.
My Life Effects Bio photo

When I wrote my Bio for the site I had a bit of an a-ha moment as I was reading it aloud to Joel. He stopped me and pulled me up where I’d written that I was an ‘aspiring’ writer. I want to write a book and see this opportunity to work towards that, but Joel made me recognise that I’m already a writer. Apparently a talented one at that according to Joel.

We discussed why I’d written that and I ended up unpacking a lot of the self doubt I’d been feeling since being offered the role. However I’ve now pitched my first blog idea, which went down with a 100% yes straight away 🙌. This will be my next blog and I’m so happy to be using my story to help others. Keep an eye out as I’m sure I’ll keep it on the down low.

As I’m always working towards something now, I have to plan my time carefully to prevent overdoing it. Flare ups happen and still hit from nowhere sometimes so I have to be flexible about what I do each day. As I work on both blogging and getting a business going again, I have to check in with myself so I don’t burn out from self inflicted expectations.

I’m so excited to see how my hard work for my shop pans out and to see where this writing journey takes me. Believe it or not, I’m actually daring to dream a little about both of these things. There it is, I got to the whole me dreaming bit at last! ✨

The Promise of Quality of Life

How Brain Disease Promised Me Quality Life Opportunities wording on a cream background. A lady with dark brown hair is asleep on a cream soft blanket with a cream puppy in her arms.
How Brain Disease Promised Me Quality Life Opportunities

A long and winding path has brought me here; to a place where I feel incredibly lucky to be surrounded with live and support. A place where I am still achieving things even when I’m mostly bedbound, a place I never dreamed I would be.

The pre Brain Disease Laura would be proud of me now. I’m still focussed but I now dare to believe that there’s more out there for me. My surgeries have lifted the brain fog enough for me to kick daytime TVs backside and do something that matters. My optimistic view on life has helped me but finding so many silver linings along this journey has been my soul food!

Questioning my role has been liberating. If I was teaching I wouldn’t have discovered other talents and explored what I have to offer. I definitely wouldn’t have had the guts to pitch my heart to the world. I wouldn’t have discovered my naturally empathetic nature and I certainly wouldn’t have felt a need to offer positivity and light with those who need it.

A cobbled path through building at night. Lit with small fairy lights above and leading to well lit buildings at the end of the path.
The lights leading the way out of the shadows

In the lights that scatter the Brain Disease trail we’ve found morsels of glue which have reinforced my bond with the boys. Ok so maybe mixing teenagers and glue isn’t the best use of a metaphor but the relationship I have with them now is more important than I ever thought it would be. Their company is the biggest reward for getting through the pain!

I know Joel is proud of me for the effort I’ve put into my own wellbeing; which is a work in progress. His belief in my writing ability is empowering and I couldn’t run my business without his bucketfuls of support. He helps me dream and believe that I can. His trail of breadcrumbs led to my hope and determination so I could make it out of the shadows.

My perspective on life has changed completely due to IIH and has opened my eyes to the amazing opportunities out there for me. Although the positives can’t undo the abrasive nature of my pain or how it wears away on all four of us; it has shown that we can still live a quality life. So, directly because of brain disease I now rise, even stronger than before.

What has changed the way you look at the world?

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Chronic Illness Bloggers

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About Laura

Introduction

Laura is a former primary school teacher, blogger, poet and jeweller living in Sussex UK. She is a positive thinking, mum of 2 teenage boys and is happily married to Joel. Laura is an IIHer, chronic migraineur, patient advocate and mental health campaigner.

After developing a debilitating brain condition, IIH, in 2014; she sadly had to give up her 14½ year teaching career. Soon after being diagnosed, she turned her life long love of writing into this blog to document her journey with chronic illnesses. This evolved into raising awareness of disabilities, chronic illnesses and mental health.

Laura runs the Mission Migraine Twitter account, which raises awareness that migraine is much more than just a headache. Laura started her own business Paprika Jewellery & Accessories after starting to make jewellery as a distraction from the pain.

She writes poetry to explore her own mental health and well-being. Laura writes about positive thinking and living her best life, despite her conditions. She hopes to inspire others to find their own sense of purpose, whatever challenges they face. Continue reading About Laura

5 Secrets for a Strong Relationship with Teenage Carers

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5 Secrets for a Strong Relationship with Teenage Carers

Young Carers

According to the ONS (Office for National Statistics), there are 149,000 young carers aged between 15 and 19 – about twice as many as in the 10-to-14 age range. [There are about 23,000 children under 9 who are carers].

There are about 50,000 Young Carers looking after someone with a Mental Health Condition in the UK. There are thought to be 3 in 5 Carers who have depression themselves, due to their role.

I aim to share the secrets that have guided our journey. They’re intended for younger families, caring for any family member, but are aimed at those with a teenage/young carer. I’m even sharing some free printables for you at the end of this post.

This advice is based on my experienced teacher viewpoint, but mostly that of a bed bound mum of 2 teenagers, who happen to be my Carers. It’s been tough, but we’re stronger than ever, as a family and individually, because we’ve worked at it!

My family

As the teen years approached our family, I feared the worst; especially as I was now chronically ill with a debilitating brain disease. How wrong could I be? I absolutely love it. We’ve just adapted our parenting style by listening and responding to each other.

With strong foundations, that Joel and I had worked hard to build together, it wasn’t hard to tweak our interactions. As our boys grow into young men, at 13 and 15 and 6ft+, we’ve found we actually enjoy spending time together – I know, crazy right?

I’m incredibly proud of both of them for all that they achieve. Their teachers recognise their awesomeness and they amaze me with what they achieve, both in and out of school. That they’re able to do so well, with so much else to deal with, is exceptional.

But I’m not delusional! I know not everyone has this and our life isn’t perfect either (erm – teenagers and brain disease involved). However, we’re a happy and loving family with amazing relationships. They are my motivation to keep positive every day!

If you want to find out more, read My story so far

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The McKee’s mucking about Christmas 2018

Parenting Styles

The secrets I want to share with you can be implemented into your family with just a little work. We are have our own parenting styles and there’s no right way. So it’s normal to go through phases of feeling like we’ve sussed it and others like we’ve fluffed it!

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So even if you’re a nailed it with some to spare parent; a doing your best, fair and square parent; a making a mess, laid out bare parent; a higgledy piggledy, up in the air parent; a tearing out your hair parent or a feeling guilty you’re not there parent, these secrets could work for you.

 

What Does Caring Involve For Me

I have a PA (carer) every weekday lunchtime, from an agency providing consistent care. These are some of the things I need help with:

  • Waking up after sleeping all morning,
  • Make me lunch, normally a smoothie as nausea stops me enjoying food
  • Making sure I have accessible water
  • Helping me to get dressed as needed and getting out my clothes each day
  • Picking anything up I drop as I can’t bend down
  • Do chores I can’t such as laundry, emptying bins and making beds
  • Preparing meals or freezing food for another day
  • Organising my medications
  • Enabling me to be more involved with the boys e.g. supporting us bake cakes
  • If I’m well enough taking us out for a cuppa or to the shops

I have a great relationship with my carers and we always have a giggle. I need laughter in my day and they bring it! They’re also always there to listen.

The Impact Caring Can Have

Being a young carer can have a big impact on the things that are important to growing up

  • It can affect a young person’s health, social life and self-confidence.
  • Many young carers struggle to juggle their education and caring which can cause pressure and stress.
  • In a survey, 39% said that nobody in their school was aware of their caring role.
  • 26% have been bullied at school because of their caring role.
  • 1 in 20 miss school because of their caring role.
But young people can learn lots of useful skills by being a young carer.

Carers Trust – Young Carers

When we realised what life was going to be like, Joel and I didn’t want the boys lives overshadowed by caring. We’re lucky enough to have PAs, so the boys don’t miss school, but it can be hard to make school aware of everything they carry with them.

Worry and anxiety have affected their mental well-being and both boys have had to learn how to cope with complex feelings. Life as a young carer is tough as we can see in these quotes.

Carers UK’s annual survey (2015) with over 5,000 carers across the UK revealed that 84% of carers feel more stressed, 78% feel more anxious and 55% reported that they suffered from depression as a result of their caring role, which was higher than findings in 2014.3

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 I’ll discuss how we manage teenage mental health in my 5 secrets below.

Being My Carer Every Day

The boys bring me breakfast and dinner make sure I have water and snacks every day. They know how to support me physically and sort anything Clumsy McClumsypants here drops or spills; like the glass of water in (yes IN) my bedside table this morning.

They need to know what to do if I press my life line and what to say to the Lifeline care team. They’d have to stop playing Xbox and may need to support or help me up if I fell. They may need to help calm me down if I was having a panic attack.

The boys have had to get used to another new cleaner being in their personal space and form bonds with my PAs. They’ve been carers for 4 years now, so are used to it, but there’s still restrictions, such as having to be quiet each morning while I sleep.

They told me the other day that their friends have to do more chores than them. My response was to ask if their friends have to make sure the house is secure and answer a doorbell every time theory mum drops something. I said I was clumsy, didn’t I?

Building a Team

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How many kids would go to their parent and tell them they don’t do as many chores as their mates? This is just one example of how we’ve worked hard to build a family dynamic based on trust, honesty, empathy and care.

We’ve all had to learn coping skills and adapt as time goes on. The stress shows at home mostly, so it’s been important to use the same strategies around their behaviour. This has led to the strong relationship we have now.

As they’ve grown up and I’ve become a little bit more stable and aware, we’ve trusted them with more responsibility. We’ve just managed two nights with Joel went away for work. My Dad (who’s always stayed before) was just down the road if needed.

They wanted to cook tea unsupervised and probably not the tidying up afterward. They have to put the hens to bed, safely away from any foxy loxies and check Jasper Cat is in for the night. I had to be trust they would put the house to bed securely too.

They amazed me with how they coped with all this responsibility. There was no time to think about having house parties or sneaking out the house to meet up with a friend! (not that we’d know anything about ever doing that).

The way Joel and I choose to do this at the beginning, has shaped how we’ve handled the cards we’ve been dealt. Everyone chooses their own path, so I’m not making any comparisons. this is just my experience. Everyone’s path is unique, so follow yours.

But use my 5 secrets to help steer you. Firstly I just need to make it clear that we sought medical advice and were referred to social services for care and support. I’m not a health Care professional, so please ask for help if you need it.

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5 Secrets for a Strong Relationship with Young Carers

  1. Asking for help is the first step. Talk to your GP.  Talk to school. Ask your kids how they’d like the help. You might need family therapy so do try it, if offered. If support given is not right for you, ask for an alternative. The skills we learnt, recognised and have since reinforced; have shaped our family’s daily lives. We learnt how to talk about our feelings, whilst being respectful. and to speak honestly, without breaking trust. I recommend organising a named teacher or pastoral care and make sure to keep them in the loop. This is individual to your needs, but be prepared to fight for this, as support is in high demand. Mental well-being for you all is key.
  2. Let them be angry with the illness. Structure ways for your children to release this, safely. Help them understand that it’s the illness that’s changed everything. The whole family will grieve for life before chronic illness, so explore ways to cope with that. We used diaries, art therapy, music and a good old shout and swear session (oooh, controversial). We’ve found that music is a lifeline for every carer in the family. Being able to lose yourself in a distraction is a lifeline for carers and you!
  3. Develop open dialogue with the Young Carers in your life and find ways that allow them to discuss what they’re feeling and experiencing without fear of backlash. The silver lining of being a bed bound mum, is having time for my boys to talk to me about their day or about something worrying them as soon as they get home.
  4. Find time for everyone to set one goal at the start of each day. You could introduce Affirmations to reinforce positive thinking. See the end of the post for more details and free printables, available til 31st March 2019. Set a time to discuss at least 1 positive from their day. Create a regular time to air issues and reinforce positives.
  5. Give yourself rewards! A really important part of feeling able to succeed, is by rewarding positive language and behaviour. The rewards can be for anything, big or small. Rewards can be verbal praise, but making time for a family reward is important to reinforce positive thinking. For example, you could go out for lunch, bake a cake together or watch a movie in bed. Let them choose most of the time, but it has to be agreed by everyone. The point is to reward the whole family regularly.

To adapt these for younger children

  1. Involve school as soon as possible, both the class teacher and headteacher should know. School may offer extra support, which can be invaluable. Play and Art therapy is in short supply, so if you’re concerned speak to your GP!
  2. Talk to them about what’s happening in a way they’ll understand. Help them express their feelings using puppets, library books and roleplay (Drs/patient).
  3. Tell them why you’re going to hospital/in pain etc. They may know more than you expect, so let them lead. My rule is that if they’re asking about it, then they’re ready for answers. Just be prepared for a ‘why, but why’ session!
  4. Ask them what they want to do that day on the way to school, you may even find out more than asking at the end of the day! Start a positives jar by everyone writing (for them if needed) ONE positive from their day. Set a regular time, to open the jar and read some. My favourite pulling out ‘cuddling with my Mummy’ on a bad day.
  5. Make time for rewards, they don’t have to cost anything, just do things as a family.

A last word and some links!

I want to help others have positive experiences, even on tough days. So I’m sharing these secrets for you. Families are unique, though, so there’s no one size fits all. Take what you want from my 5 secrets, but remember these things are key:

Ask for help! Young Carers may have to do more at home than their friends, so schools should provide support and make allowances.

Make sure everyone truly understands and enable your kids to express how they feel. Create a safe environment and look out for signs that you may need to step in.

A great team relies on good communication which is honest, loyal and respectful, so be a good role model. Recognise small wins! Celebrate at least one good thing from your day.

If the life you want for your family seems a long way off or you’d like some reassurance you’re doing okay, then I hope this post has helped. Please ask me questions in the comments and tell me how you make life positive for young carers and your family.

Resources 

Carers Trust -Support for Young Carers

Young Minds – Looking After Yourself aa a Young Carer

NHS – Young Carers Rights

Carer Gateway – Advice for Parents & Teachers of Young Carers

Carers UK – Hidden Depression

Chronic Illness Bloggers

Sign up for New & Exclusives – Help for Young Carers

Do you want to be the first to know what’s coming and get your hands on exclusive deals? I’ve created a set of Printable Affirmations that would be perfect for setting the tone for a good day for Young Carers, as mentioned in Secret number 4 above. Grab a copy of this when you sign up to my occasionally regular newsletter today!

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✋ Hey there! You could really help me out. Just one minute of your time to press that share button helps me so much! You’ll literally make me do a bed-bound happy dance. Now there’s an image for you!

How to Create Clarity in a Busy Mind in 15 minutes

 

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How to Create Clarity in a Busy Mind in 15 Minutes

I don’t know about you but the beginning of the year is a busy brain season for me. I’ve been creating goals, working on new ideas and doing lots of training. My brain’s been on overdrive, with so much that I want to do this year! I’m going to share my own busy mind experiences with you and my top tips for clearing mind clutter.

Thinking Ahead 

Our brains can easily go into overdrive when we start acting on our goals and it’s tough keeping all that information in our heads. I wrote about planning the year ahead in this post:  How to Write Awesome 2019 Goals Without Feeling Overwhelmed

  • I’m sharing my social media plan printable with you. It’s great for anyone who wants to limit time on social media, but I did create it with Chronic Bloggers in mind. If you want productivity over busyness, grab it at the end of this post ⬇️

My problem with plans, is that I want to just crack on and forget I’ve got brain disease! I’ve always had a passion for planning, but it doesn’t always go to plan. I go full-on Laura mode, with ideas taking over every tiny bit of headspace left I have left. The bits not backlogged with blood and CSF. Ewww, sorry for that image. Wondering what’s CSF? ➡️ What is Idiopathic Intracranial Hypertension/IIH?

I’ve not planned properly, since having left teaching, but this year I got busy creating planning grids for my blog, email and business strategies. I hadn’t planned to make them, which messed up my plans. 🤔 I was trying to do it all, forgetting to review and adapt and I gave that anxiety monster a VIP pass! As I practise grounding strategies often, I was able to calm my busy mind quickly and worked on strategies for organising my thoughts.

Write things down to make sense of your thoughts

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To Do Notes are ok if they have some structure to them

 

If your brain’s overworked, get a pen and some paper and write your thoughts down. I don’t think ‘to do’ lists, are a productive way to form clear ideas from jumbled thoughts. They’re great for quick reminders, but not so great for bigger issues. So what could you use instead? Here are my top tips for creating clarity in a busy mind.

I normally use a diary but this year I decided to try a more structured planner.  Structure is important for focusing  your thoughts, whichever format is for you.

 

 

 

I brought my planner from StarCreationsCo on Etsy   It’s great because:

  • It has a yearly and monthly calendar for planning ahead ✅
  • it has a space for me to write my goals ✅ (I want those everywhere)
  • It has a monthly page of squares for bullet journaling, so I can test the idea ✅
  • It has space to plan, reflect and add your most important jobs ✅
  • Most of all it’s really pretty and I can add stickers and washi tape ✅

You can see where I’ve rubbed out where I’ve planned too much here. No filter…

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My planner has a week to view and is formatted to helps me organise my thoughts on paper

Reflection 

At the end of each day I always write 3 positive things which happened that day. There’s not quite enough space in the planner. So I’m using a gorgeous diary covered in recycled vintage Korean fabric from my friend’s lovely Etsy shop – The Vintage Bookworm. I write:

  • I’m Happy because…
  •  I’m Grateful for…
  • I’m Proud of…

It’s so important to reflect on each day, each week, each month and each year to have a success with positive mindset! Take time to celebrate your successes, big or small. Reward yourself with a pamper, a bubble bath or just a pat on the back. These rewards trigger the pleasure centres of our brain and make us want more positivity.

 

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An overly busy mind leads to overwhelm

An Overloaded Mind

When things get too much and start to become a mess in my head, I create head space by getting my ideas down on paper or notes on my phone. I’ve been creating structure so I can be productive and focused. I’ve made a social media plan a free printable for you ⬇️

 

 

My anxiety is usually from having an overloaded mind and this still gets the better of me sometimes. Structuring my thoughts and writing them down always calms my mind. I’m sharing the strategies I’ve built up over time with you and some I found on these sites;

Anxiety Canada.com  and Anxieties.com

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How To Create Clarity In A Busy Mind In 15 Minutes

 

Top Tips for Creating Clarity in a Busy Mind in just 15 Minutes

 

When One Big Problem is Bothering You

  1. Set a 15 minute timer and free write – This is a cathartic activity and works best with a real pen and paper so that you can let your thoughts spill onto the paper; clearing your mind clutter. If you avoid doing this your problem will get just bigger in your head. If you write it down, it may not seem as big a problem as you thought!
  2. Speak to someone you trust – Find someone you know is a good listener, such as your partner or good friend. Set ground rules before you start and be clear that you’ll only spend 15 minutes talking about this. Going over and over the problem will create more negativity and isn’t good for your headspace. Say it, listen and move on.
  3. Act on your negative feelings, before it becomes a problem – Are you feeling Stressed, Nervous, Frustrated or Anxious? Set a 10 minute timer and use this feeling to turn the problem into a question – e.g. Why am I anxious about going to the doctors? Then quickly list the reasons that come up. Write your answer down using positive language i.e ‘I can stop feeling anxious by writing my questions’.
  4. Be solution focused
  • Using a 3 minute egg timer – write down your problem. You can create a mind map or flow chart if visuals help you.
  • Turn over the timer – write down your negative feelings about this problem. You may have many or just one. Write them as one main sentence about why you feel that way e.g. I feel really nervous about this job interview.
  • Turn over the timer – write down what’s stopping you solve this e.g. I’m nervous because last time I forgot to say…! Be specific and don’t make assumptions.
  • Turn over the timer – think about your ideal solution or a 1st step. Write this down e.g. I’m going to make notes on flash cards so I remember to say…

Some problems will need more than 15 minutes to solve completely, but these strategies can be adapted. If you ignore these big problems they’ll start to affect your health.

How to Cope with an Overactive Mind in 15 Minutes 

  • Exercise daily – Daily you say? Yes, daily! I don’t mean a full on work out, we’re talking about 15 minutes here! You could: Take a 15 minute walk round the park, do 15 minutes of reps/sit ups etc or try a 15 minute morning yoga stretch. Exercise helps clear your mind and releases serotonin, which makes you feel good! Even from bed I do bed yoga (Yep, it’s a thing) most days. *Please make sure to check with you Doctor before starting any new exercise routine.
  • Set a daily worry/thinking time – This one might sound strange, but you can retrain your brain by setting a regular time to sit quietly for 15 minutes and let those thoughts free. This only works if you’re able to distract yourself the rest of the day as we don’t want to lose you down that rabbit hole before you get to that time.
  • Carry a little notebook and Pen – This one might seem obvious, but it’s a must. I tend to use my phone’s notes, it just needs to be portable. Offload your thoughts quickly before they get too heavy. If you’re a night worrier then keep one next to your bed too. Just set a timer for 15 minutes.
  • Meditate regularly – Many of us struggle to fit this into our lives or think it’s too hard. I’ve used meditation daily since becoming ill as it’s known for creating calm. At first work on controlling your breathing and let your thoughts come to mind. Then let them go by focusing back on your breathing. A guided meditation will talk you through this process and there are loads available for free on YouTube or apps, such as Insight Timer. This is one of the top 5 things that help me stay positive. I’ve written more on this here. These are both great guided meditations for beginners.
  • The Honest Guys Body Scan Guided Meditation
  • Jason Stephenson Beginners Guided Meditation

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Use Meditation to focus and create space for your thoughts, before letting them go.

  • Turn negatives into a positives  – Set a 15 minute timer and grab a piece of paper. Draw a vertical line half way and write everything busying your mind. Then look at each one separately and try to turn it into a positive statement. E.g I’m not sleeping well, I’m so tired  | I will go to bed early and sleep will happen. This redirects your thoughts and establishes positive language, which helps you to remain focused and find solutions quickly.
  • Use Affirmations for daily positive thoughts – I use these to focus on the big dreams, I dare to dream. They help keep me positive even on the worst days when pain and/or anxiety are off the charts! Affirmations are positive statements or intentions that tell your brain___ is totally going to happen! Using these daily can help you become who you dream of being! I’ve used them successfully for three brain and skull surgeries 😵. If you still want to be rid of negativity, I can help. I’ve created a set of affirmations for my Etsy shop and you can get your hands on a free sample today. See details below ⬇️
  • Use a strategy to reduce the time you spend on Social Media – Let’s face it, we can’t get away from social media and as a blogger you need it. I take a total break or limit the number of sites I’m on when I need to rest. I recommend using an app to schedule your content ahead. You can be more productive by planning in bulk so that you can focus on engagement for 15 minutes before you post. If this is your style then please download my free social media planner printable below ⬇️. I created it for Chronic Illness bloggers, but it can be adapted for anyone.

Social Media Planner for Chronic Bloggers

Social Media Planner for Chronic Illness Bloggers using 15 minutes Engagement time before posting

In Conclusion 

Please take away the most important message from this – You need to write your thoughts down to make sense of what you’re stewing over. Set up regular habits to kickstart a cycle of positive thinking, reflection and reward. It’s really worth taking 15 minutes to convert your thoughts into beautiful ideas or solutions and it’s just as important to look after your brain as the rest of your body! Try out some of these ideas to find what works for you!

I’d love to hear from you if you try any of these out or want to share ideas that help you. Sharing is caring and with mental health, we need to keep an ongoing conversation!

Before you go…

My Etsy shop The Paprika Jewellery aims to support positive thinking by creating designs from positive themes. Jewellery & Accessories made from the soul, for the soul.

Want to be the first to know what’s coming and get your hands on exclusive deals? Grab a 15% coupon code for your next purchase in my Etsy shop and a free printable sample of my ‘Positive Affirmations’ by signing up to my occasionally regular newsletter today!

Click here to subscribe and grab your freebies! img_2933

Chronic Illness Bloggers

5 Morning Affirmations To Guarantee A Successful Day!

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5 Morning Affirmations To Guarantee A Successful Day

Hey there, are you someone who needs a bit of a boost in your day?

Maybe you’re feeling like you’re missing the mark at work, that your relationship’s doomed, that you’re useless because you’re chronically ill or that you’re just having disastrous days.

job12-280-chim-00918If you’re a negative thinker or a self-sabotager and the life you want seems a long way off, then this post’s for you! I’ve got tips for making positive changes by just spending a few minutes a day on affirmations. There’s even science to back that up! So now with your morning coffee you can start your day the positive way!

 

What are Affirmations?

Maybe you’ve heard of Affirmations but think they sound sappy or too out there. Maybe you don’t think they’d help as you’re ok, just not as successful as you’d hoped. Stick with me and I’ll show you how affirmations help you build a positive mindset.

Before I start you off on your journey to a successful day, you need to know what the deal is. I first heard of Affirmations about 15 months ago and now spend a few minutes each day on them. I think much more positively now and want everybody to realise they can find positive in every day. Here are a few simple tips to help you!

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Set Positive Intentions

 

Affirmations help you set an intention for that day (or however long you need it for), starting with ‘I am’ for example. They’re a great tool for helping you think more positively and if used regularly, each day will be more positive! OK, so your thoughts won’t change overnight, but I can assure you that they’ll work if you stick with it.

 

 

You use something you want to feel, do or happen and write it as though it’s already happening. So instead of ‘I want to feel loved and happy’. Your affirmation says ‘I choose love and happiness’.

You may have to do a little bit of work to crack the code at first, but you’ll soon be starting your day the positive way. So if you’re feeling low or a bit meh; then this is such a simple way to structure your thoughts and create a positive loop:

positive thought = positive actions = self-worth = positive thought and so on.

How Affirmations Work

For an affirmation to work fully, you need to trick your brain. A bit like changing the TV remote’s batteries, you need to put negative and positive in the right place. Instead of matching them to a symbol, you need to rewire your thinking, especially if you’re a Negative Nelly!

To rewire your brain, you have to make Positive Polly drown out Negative Nelly. To do that, you need to say the affirmation out loud, more than once! Just like exercise to improve our physical health is repetitive, any exercise to improve our mental health needs to be repetitive. Practise makes Positive!

To Create this positive repetition, you could write them in your journal/diary, put them on a memo board/fridge or record them using a voice memo app and listen to them wherever you are. I use all 3 of these for maximum impact!

Each time you create these positive responses from affirmations, your brain kicks in the reward mechanism. I won’t get too sciencey, but if you use affirmations about your most important values, your brain will soon begin to have positive reactions.

These positive reactions create a reward, such as increasing your self-worth. Once your brain gets a reward it will want more. You’ll start thinking and acting more positively. You’ll value yourself and feel a sense of purpose. You’ll want to look after yourself more and start creating more positive than negative in your life.

I want to start you on this journey, so read on and see how much it helped me and get yourself set the 5 affirmations to start your successful day.

**Disclaimer – this won’t happen overnight! You’ll have to put the work in!

My Journey with affirmations

One of my favourite affirmations is ‘I replace anger with compassion and understanding’. When I first picked it from my set of cards, I wasn’t having the best day. I was angry with myself about something (I’ve no idea what) and almost put it back in the pack!

When I say I was angry with myself, I really mean that I felt guilty about something I probably should have done. It’s always been a habit of mine, but when I was still  processing my chronic illness I felt like this a lot!

Anyway, I left it on display for a couple of days and as suggested, I read it often and would say it too myself in my head every so often, as I wasn’t cool with saying it out loud at first. I started to feel calmer soon after making that choice to keep that card.

I started to feel less frustration and guilt and began to feel more positive. As I stuck with it, I found those Negative Nelly feelings were getting drowned out by Positivity Polly.

The more positive I felt the more positive action I took with my self care, which led to more positive thinking. And so the cycle continued and I was hooked!

5 Morning Affirmations to Guarantee a Successful Day

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5 Morning Affirmations to Guarantee a Successful Day

So this is what you’re here for. If you’ve skimmed to get here then do make sure you know what you’re doing, you cheeky thing! I’ve made one for you and a blank one to put personalised affirmations in.

You can download these here: Morning Affirmations

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I am full of gratitude and inspiration affirmation

  1. I am full of gratitude and inspiration
  2. Today is a wonderful new day, full of success
  3. I am open to positive change
  4. Today I will share my knowledge with others
  5. My ideas are worthy of being shared

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Blank Affirmation design for personalised affirmations

These are simple affirmations for success and to use each morning to set you up for a great day. Why not have a go tomorrow morning and come back and tell me about it!

If you’d like access to more free affirmations, then just sign up for my news and exclusives emails, using the pop up form or the link below. 

Sign up today for your free printable Affirmations cards

References

https://www.louisehay.com/affirmations/

If you’re really into Science then this explains why affirmations work and what effects they have on the brain. How Self Affirmation affects the brain

 

Chronic Illness Bloggers

How to Write Awesome 2019 Goals Without Feeling Overwhelmed!

It’s Goal Setting Time. So how can you do this effectively, with a positive mindset? Here are my Top Tips!

 

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Okay, I know there are heaps of blogs out there about planning your goals for 2019, but (and this is a BIG but), there aren’t many out there which give you tips, based on science, to help stop nasty overwhelm and anxiety come knocking.

So, if you’re likely to be run ragged over resolutions; inundated with intentions; in a tiz over targets or engulfed in a goal funk then you NEED to read this post! You can interrupt that cycle of overwhelm and anxiety triggers.

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Why Me? 

Well, I’ve been there year after year. I’d make resolutions that would be forgotten by the end of January and endless to do lists that grew overnight. That was just at home! At work I’d have pages of lists and plans for every second. But, my professional targets would be in a folder until a week before my progress review!

I spent years making lists about lists and overflowing lists of things going round in my head, often keeping me up at night. I’d get distracted and put off doing what would move me forwards and achieve my goals. But now I know how to keep on top of my to do lists and manage my busy brain so I don’t get overwhelmed! You can too!

When Change Was Needed

When I fell ill in January 2014, you can imagine there were no resolutions being made. My focus was all on the one thing that was out of my control – getting better [I’ll come back to that]! I made a conscious choice not to make resolutions the next year, as they’re just too broad for me. I’d put too much pressure on myself, over-thinking and having negative experiences as it felt unachievable!

When I started taking my own business more seriously, even though it was mainly a pain distractor and boredom buster, I still wanted to succeed so I joined a new Facebook group, run by a coach called Josie. I was really excited by what she was saying about living with less worry, especially learning about the science behind my feelings. It was just what I needed to hear! Now I’m going to share some of what Josie’s taught me with you! You can read about what she does here: Worry Free

I soon realised I was still trying to do too much, leaving me drained when my husband and 2 boys needed me. I ended up giving myself just 1 goal: ‘I Will Be Kind To Myself’! I learnt so much about myself, mostly, that my family come 1st – Always! I’ve worked with Josie on my goals for the last 3 years now and each time has been different. From her amazing live videos, small group conference calls and support.

This year I’ve used her brand new Goal Creator download and video, which I’ll tell you how to get for FREE at the end of the post….

How To Write Awesome Goals for 2019 without being overwhelmed! 

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The Big Review

One of THE most important parts of Goal Setting is looking back at what’s worked well for you in the past and what you could improve. It’s really important that you don’t skip this bit! Here I’ll share 2 exercises that might help you. Try it and see!

  • Look back at 3 of your biggest achievements and 3 experiences that didn’t go well (avoiding triggers). List what stands out on both occasions?
  • List all that went well for you in 2018. Do this quickly, without thinking too much. Is there anything from your goals that you didn’t achieve as you wanted to? Do you notice any patterns that could help with planning goals this year?

Finally, don’t worry if you didn’t achieve all of last years goals. You can be flexible.

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Life Choices

Before doing anything, take a moment to think about your needs. Are you thinking how to create what you want more of or less of in your life? Overwhelm occurs if you don’t create balance. This exercise from Josie’s 6 week goal setting course can really help you zoom in on your needs. She explains it in more detail, but have a go!

  1. Roles – family, worklife, hobbies and community/your tribe.
  2. Relationships – family, friends, loved ones and other positive interactions.
  3. Self Worth –  positive mindset/thoughts and how you value yourselfY

Priorities  

You may have a long list at this point. Now narrow it down to just 3 or 4 goals. Try rating these areas from 1 to 10.  This is based on an exercise from The Goal Creator.

  • Personal Growth
  • Emotional Well-being
  • Romance
  • Family & Friendships
  • Self Care
  • Hobbies and Fun
  • Career/Work
  • Money
  • Your own Environment
  • Health, Nutrition and Fitness

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Which of these score the lowest number? The lowest of these should help you prioritise 3 or 4 goals. What do you need more of? What do you need less of?

 

 

What Might Be Holding You Back

Jot down the 3 or 4 goals you’re thinking of. Now take a step back and think of what might be holding you back from achieving them? Have you got any fears or worries?

There could be a few reasons for this. Ask yourself these questions:

  • Is this goal out of your control? Remember when I said ‘Getting Better’ is my ideal goal, but I can only control some aspects of this. Yours could be ‘Becoming a Millionaire’. But things you can’t control at all, need to go. If you could control parts of it, then make the bit you can control your goal.
  • Is it jumbled in your mind? Is there too much going round in your head and you can’t work out what to focus on?  Too help, can you see how the goal you’re thinking of fits into your Roles, Relationships and/or Self Worth?
  • Is it too much to do? It’s quite possible that in your excitement, you’ve forgotten  these aren’t your long term goals. Realistically is it something you can do in under a year? If you don’t think so, then making this a goal could make you feel overwhelmed. Break it down into smaller chunks and try again.
  • Is something already bothering you about this goal? Maybe you feel overwhelmed by how much you’ve got to do. Or maybe you feel pressure to succeed. Jot down everything you’re worrying about, then come back to it. Here’s a bit of science about Fear when setting and achieving our goals.

When under too much stress, the body’s natural response to fear may trigger the fight – flight response. When triggered, our bodies release chemicals which cause a burst of energy and strength, raising our heart rate, blood pressure and breathing rate. This primal response to fear or stress is because our bodies can’t tell the difference between real or perceived threats. This may lead responses such as – anxiety attacks (flight), guilt (fight) or procrastination (freeze). The Fight or Flight response occurs when we are overwhelmed by everything we need to do. Want more? Click this link

Setting Goals

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Now you should have some clarity on the goals you need to set. However, this is just a taster of the process that Josie takes you through with her Goal Creator training that you can get FOR FREE! So if you’d like more support then check out what she has to offer you at the end of this post!

  1. Write down the 3 or 4 goals you’ve chosen to focus on. Why have you chosen these? What positive effect will working on these goals have?
  2. Write down the steps you need to achieve each of your goals. Include everything that will accomplish your goals, especially the little things that may seem obvious – they’re important.
  3. Use definite language for each goal – using ‘I will’ instead of ‘I want to’. Using this language helps to set your mindset and believe that you will achieve your goal in 2019!
  4. Go back to each step and set a date that you think is reasonable for completing  that step. This holds you accountable for your actions and keeps you focused.
  5. Write down your goals where you’ll see them daily. Get creative! This ensures you’re thinking of your goals each day and will encourage you to act!
  6. Choose a reward for completing each goal. How will you celebrate? It doesn’t have to be a material reward, you can get your a manicure or have a date night, for example. This might seem silly, but it’s a really important part of the process. Josie has kindly explained the science behind using rewards:

The brain loves rewards. It loves to feel like it’s getting somewhere. So, when we reward ourselves for small actions, we are sending positive brain chemicals around our bodies. The more we do this, the more we create these positive chemicals which encourage us to do more of the things that keep us safe and well. The more we do this we are creating positive reinforcement. So the more positive actions we take, the greater success we will have. This will keep you focused, motivated and feeling good!

In Conclusion 

When you have lots running around your head you can get into a negative cycle of overthinking. Having a busy brain can affect both your physical and mental health! Getting your ideas down on paper will help you to stop worrying about everything.

Then you can work around your strengths and create a positive mindset for goal setting. When you consider your priorities you can create meaningful goals, which can be broken into small, manageable steps. Finally, by rewarding wins, you create a positive cycle which leads to more and more success. Now go and create your awesome goals for 2019, without feeling overwhelmed!

The Goal Creator 

Yay – you’ve found the link to Josie’s FREE Goal Creator training, that’s brand new for 2019! Whether you’ve read all my tips or skimmed your way here; It’s a win!

The Goal Creator workbook and video will help you get clarity of mind by getting things down on paper. You’ll be able to move forwards and take small actionable steps to stop overwhelm and lead you to success.

The Goal Creator Free workbook

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The Impact of Positive Mindset on Taking the Old into the New #NYE2018 #positivemindset #poetry

Here’s my take on using positive mindset strategies to let go of the old in anticipation of the wonderful opportunities ahead. More importantly, I talk about the importance of spending time in the now!

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I hope you can make 2019 the year that you learn to be present and mindful of taking each day at a time. Please enjoy my poem and then spend a little time reading it again to recognise where you could take on 1 New way of looking at a part of your life next year!

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Follow me @Strength Of Tears on Instagram

Or @Strength Of Tears on Facebook

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Chronic Illness Bloggers

How to stay sane when stuck in bed with chronic illness or recovering from surgery. An insider’s guide

Staying level headed with debilitating pain. 

Those of you that already follow my story know I’m no stranger to surgery. I’ve  had my 3rd brain stent surgery for IIH (Idiopathic Intracranial Hypertension ) on 15th November. I was aiming to get downstairs on Saturday and I made it. It’s so important to have goals to keep you motivated. I had a family day yesterday too!

But I’m going to be spending this week in bed again recovering, as expected. My pain levels are high today and I had a bad night’s sleep, but I don’t regret it. Days with family are what keep you going . My condition is extremely debilitating but I’m not seeking sympathy; I share my experiences to raise awareness!

Please note: if you have questions about IIH, any chronic illness or mental health concerns; please speak to a trained health professional. These tips are about self care and any advice I share is based on my own experiences.

I shared this selfie on social media, 10 days after surgery. It was youngest’s 13th birthday and I was in bed, fed up that I couldn’t celebrate. The response to this post has been amazing. I received lots of supportive messages and my husband, Joel, was asked at work how I stay sane and positive when I’m stuck in bed for weeks – struggling to get to my en-suite bathroom at times.

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So here’s my guide to staying sane as a chronic and invisible illness warrior! 

  • Don’t fight the pain! I used to be determined not to give in to the pain and I’d push myself to do too much too soon, making my recovery take longer. Now, I try to listen to my body and have retrained my brain to know that it’s okay to rest, This has taken years of making mistakes, until being taught to recognise and change patterns in my behaviour by my coach, Josie (details below).
  • Ask friends and family to tell you when you’re looking tired. It’s easy to miss signs that you’re flagging, but don’t shy away from asking those close to you to say if you look like you need to rest. If someone tells me I look rough I’m not offended, I just realise that I do hurt a lot and may need that pain relief!

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  • Remember your condition doesn’t only affect you. A delicate ecosystem occurs for most familes when someone has a chronic illlness. This means any change has an effect on family life. If you’re the one in constant pain, then your contribution to family life is probably limited. For example, I usually do online grocery shopping and am usually the mediator. Plan for those times when you can’t make your usual contribution. Try asking a friend to pop to the shops or do some jobs around the house, so your partner doesn’t have to do everything!
  • Give yourself time to recover. I always seem to forget how tough living with daily high level pain is or how hard recovery from surgery is. So I tend to think I’ll cope better than I actually can. Now I set myself goals and break these down into smaller steps. E.g restarting your physio or getting dressed before venturing downstairs. Whatever goals/steps you take need to be all about you! This is the time to practice self care! Maybe keep a pain diary or notes after surgery, so you can look back at what has worked for you in the past,

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  • Be honest about having visitors. Let’s be honest, the novelty of surgery soon wears off and friends might get bored with your chronic illness. You’ll probably stop getting as many flowers and cards, but hopefully your friends will still support you as much as ever. For me, receiving a text cheers me up, but having visitors (when you can) is vital! You’ll get a mental boost and it breaks up the bedroom boredom. But, if you’re in too much pain; be brave and postpone. True friends will understand and if they don’t, then you don’t need them!
  • Keep a gratitude journal. I spend time every day reflecting on what I’m thankful for. I write 3 positive things in my diary every night or the following morning, This can be anything and it’s the little things that count when you’re recovering from surgery or a bad flare. Washing my hair, managing to eat a proper meal, having a snuggle with Joel or a giggle with my boys mean so much to me in that acute pain phase. I’d suggest starting getting into this routine before surgery. It’s also really nice to share these with friends or family!
  • Meditate. I can’t explain how much meditation helps keeps me calm in hospital and in the following weeks. I download my favourite meditations (in case there’s no WiFi) on my phone and take my headphones to block out the horrible noises on a ward. They also help me sleep between hourly obs through the night! I also use techniques I’ve learnt to visualise my happy place to lie still during a procedure or anaesthetic. You can read my tips for meditation here.
  • Use affirmations to visualise positivity. Ok, so I know the word meditation may have scared you off, but stay with me! Using affirmations has been the key to staying sane through 3 brain and spine surgeries this year! I also use affirmations cards from TheYesMum  (@theyesmummum on Instagram) daily.

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My coach Josie, from Worry Freedom created personalised affirmations to help manage my worries, which are mainly about how surgery impacts my family. She turned each concern into a positive affirmation, such as ‘I am proud that my boys have built resilience’. I record these as voice memos on my phone and listen to them before, during and after my stay in hospital. They’ve helped me to stop worrying about everyone else and concentrate on my one job – healing.

  • Ask family to spend time with you in your bedroom. When you’re always in bed, it can get very lonely. So, whether it’s snuggling with Joel watching TV, having a chat about the day or watching a film with everyone on the bed; having my family come to me is so important. For example, we ate youngest’s birthday meal in my bedroom, so that I could still be a part of his special day.
  • Entertainment. I’ve always been against TVs in bedrooms (personal choice), but after my first surgery Joel set one up in my bedroom so I could watch my favourite comfort movies. It’s stayed! I rely on my iPad so when we realised this was going to be our new normal, Joel set up Apple TV so I have lots of choice. I’ve also have audible and Spotify so I can listen to gentle music or spoken word on the days when I can’t open my eyes.
  • Bonus Tip – When you’re doing better, but still stuck in bed or the house I think you need a hobby. Many chronic illness warriors craft and this helped me not to feel so lost when I’d been diagnosed. I’d taken silversmithing classes before falling ill, so I began making beaded and up-cycled creations. Now I run my own online business with an Etsy shop. I’m closed whilst I recover, but I’ll be posting more about this as I prepare for reopening. You can see what I make on my social media pages too. ⬇️

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So these are my top 10 tips for managing to stay positive, or at least rational when can’t do anything. But hey, we’re all different and these are just what works for me, If you’ve got the money to invest in working with a coach, do it! It’s all about finding solutions and a good coach can change your outlook! I had counselling after diagnosis, when I was still grieving for the life I’d had. If you’re struggling please talk to your GP/Doctor straight away!

Are you recovering from major surgery? Do you have a chronic illnesses? I’d love to hear about what you’ve tried if you’re housebound or bed-bound. What tips do you have to keep rational and level-headed? 

Chronic Illness Bloggers

Life as a bed-bound workaholic. #chronicillness

Stopping work due to ill health usually leads to a feeling of loss and purpose. For workaholics, giving up a career just adds to the grief of a previous life. If you’re also mostly bed bound; it’s almost impossible to give in.

On being a workaholic 

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I’d wanted to teach from age 5 and I loved it from the moment I stepped in the classroom. I was a workaholic, working nights and weekends, to try to make a difference.

Teaching is so much more than a job, you never stop thinking about some aspect and with you take on many roles.

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When I had my boys I worked part time, but was still working a 40-50 hour week. A workaholic is compelled to keep working and creates a life that’s out of balance. Read more here. Being a mum always came first, but I always felt the need to be doing something. Just a workaholic in another role; feeling like I couldn’t do either role justice. In hindsight; I know I gave both roles everything I could.

Becoming Bed-Bound

If you’ve read my story, you’ll know I had to stop teaching when I became ill. When we came to the mutual decision that I should be medically dismissed, I knew it was best for everyone. However, I struggled with the reality of having to bow out, from my bed, with no farewell, after the 14+ years I’d dedicated to my profession. I still wish I’d done more, but I’m proud of all that I achieved and that I had some influence on so many little lives.

We realised that becoming bedbound had a silver lining. I could now just enjoy the most important job I had and put everything I could into motherhood, without throwing life out of balance! We love that I’m more present and less stressed. Now I love hearing the key in the lock, anticipating my boys coming to see me.

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However, as a workaholic, even a bed-bound one with brain disease, I still needed to be DOING something. So I began making jewellery and soon discovered Conscious Crafties Marketplace The site was set up to give those with chronic illness, disabilites or their carers a sense of purpose again. You’ll find this statement on the site’s homepage.

‘A community of talented artists and crafters who are living a purposeful life by changing the way humanity perceives those living with Chronic Illness, Disabilities or Carers of those affected’

This amazing community has helped me connect with others who understand what we’re going through. I’ve made many true friends and am living a purposeful life. But, I’m a busy minded person and so volunteered to help Karen (the founder) run the site. Everyone tells me I do too much, but I thrive on helping others and love organising things. But I was juggling all of this and more, from bed, and it was beginning to impact on our family time, so something had to change!

Breaking Free

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Making the best of family time

I needed to break some of the bad habits I’ve developed over years of being a workaholic. But I have the best motivation; to bring balance in to my life. I’ve looked at my behaviour patterns and found I was spending far too much time on social media. I’m now slowly re-training my brain to know that it’s okay to rest!

Josie from Worry Free told me that ‘My JOB is to heal. By giving me a role/job of healing and rest, I have that all important role we crave and am now a resting workaholic! Such a simple idea, but so effective; I’m already breaking bad habits,  doing less and achieving more. Ultimately I’ll have more quality time to spend with my family.

 

Chronic Illness Bloggers

#IIH life in the slow lane!

I’m finally posting an update after my 2nd surgery, nearly a year on, so thanks for your patience while I’ve been in the slow lane! I’ve been on a rollercoaster journey with my IIH (Idiopathic Intracranial Hypertension) over the last year.

WHAT’S BEEN HAPPENING?

In June 2017 I had my second skull surgery and 4 weeks ago I had the same operation on the left. They have removed the C1 vertebrae mass on both sides to make space for the jugular vein that was squashed; preventing blood draining from my brain. I use a plumbing analogy to explain this. If you think of the veins as the pipes, you’d remove the blockage at the top first, because if you remove the top blockage beforehand, you’ll just create a bigger blockage below. This is how my surgeons work, slowly and methodically to ensure that all surgeries are exacting.

The surgeries have been difficult for us all. I’m not scared of surgery, but I worry about how my boys and Joel will handle the added pressure. This time, I’ve asked for help from the wonderful Josie Brocksom of Worry Free who gave me strategies to help me deal with my concerns and trust that Joel would be able to cope with the additional pressure, which of course he has. She has also taught me that it’s ok to rest, so this time I have let myself stay in the slow lane so that I can heal!

I’m lucky enough to be covered by private healthcare. One of the biggest perks is having a private room of course, but I love the food too! Yes, really! I’ve been waiting to show you this photo of the yummy lunch I had the day after my surgery last year. Just look how good that was! I just had to order the same this year too!

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Before I continue, I wanted to address a question Joel and I get asked so often:

HOW DO WE KEEP SO POSITIVE?

As with everything in life, we have some choice. Of course, I have no control over how the IIH affects me, apart from my pain relief. However, I do have control over how I manage to stop my high pain levels, from affecting my mood. Myself, Joel and my boys also choose how much we let IIH affect our own lives and time together.

I’ve been able to share over 20 years with my best friend. Joel is affected by IIH just as much as I am. However, amongst experiencing all my of pain, constant worry and looking after us; he works incredibly hard in a tough job. He is also an advocate for carers through the Family Matters team across the whole of Lloyds Banking Group! He keeps me going and picks me up when I fall. He makes me laugh til it hurts and ensures that the children have emotional, physical and comical needs met. I couldn’t ask for anything more and I know I’m lucky to have him by my side at every step.

I can’t say all is peachy, as of course it’s not: I still cry, get frustrated and have meltdowns-I’m only human! Joel and the boys keep me fighting this disease and get on every day. We’re open with each other and share our experiences with others who just get it.. We also have the opportunity to raise awareness of how to stay positive when chronic illness affects a family, and we are both very proud to do this!

THE SURGERY

When the wizard has (my ENT specialist surgeon) removed part of the C1 vertebrae, he gets as close to the nerve as possible; without it being dangerous. This is only done for the few like me, by the team in Cambridge. They’ve developed procedures to reduce unwanted side effects and they explain everything so well. They are now developing other studies and sharing their findings with the medical world.

I was only in overnight both times and have a drain in which helps to limit the chance of having unwanted side effects. These are shoulder weakness, trouble swallowing and a hoarse voice. It’s too gross to show, but here are my post op selfies!

2016-feeling warm and puffy!

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2017-Looking amazing on oxygen all night due to low SATs

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The operations have both been successful. The scans show that the jugular vein is no longer under pressure and the blood can flow freely through the veins there now.

NEXT STEPS:

During my pre-op testing (ct venoplasty/venogram), my neuro radiologist found arachnoid granulations pushing on my stent and narrowing the flow of blood. These are normal lesions found in the venous channels that allow the CSF to flow into the venous channels. These are rarely found in the transverse sinus, however, and unfortunately they are growing around and through the stent in the left side. This explains why I started to go down hill again a few months after last year’s surgery, so I will need a procedure to stretch the stent and push the granulation back.

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Unfortunately, I also need a stent in the right transverse sinus, so I have been referred back to the neuro radiologist following our check up in Cambridge yesterday. It’s good to know that we are moving forward surgically and it means that I can focus on my goal of reducing the morphine even more. The transverse sinus is part of the venous system in the brain and allows the blood to drain from the back of the head. If you’d like to know more, I have a reference to this medical article here.

Last year’s surgery was such a success that I was able to travel abroad, have a 40th birthday party and generally spend more time with my family. This is my priority and as I was able to reduce the dose of morphine I take in the morning a few months ago, I now need to get back on track with that as I come out of the other side.

I’ve big plans with my family this year and although I always suffer, it’s so important that I try and enjoy my life as much as I can. I don’t know how much I will recover from this disease. This means making the most of life NOW! This is why we decided to visit the Imperial war museum yesterday on our trip to Cambridge. This was only my second trip out of my bedroom since surgery. Although I only managed half the visit in the museum and the other half lying down in the car, I’m amazed that I was able to do tbis and even though I’m exhausted today, I’m still finishing this blog!

As it’s only a month post op, I can’t say much has changed; although I haven’t passed out since, which was happening weekly beforehand. But, I feel like I’m turning the corner now and have every faith that symptoms will continue inproving quickly, as soon. I had such a positive response from last year’s surgery,  I feel positive that I will continue making baby steps towards achieve my goal to reduce my meds and increase time with my loved ones. So, I’m still in the slow lane, but I’m happy here for now whilst I carry out my job of healing, and continuing to rest!

Please check out my social media accounts and stores if you’re inspired:

http://www.facebook.com/Tearsofstrength

http://www.twitter.com/happyiihgirl

http://www.instagram.com/paprikajewellery2

http://www.pinterest.co.uk/PaprikaJeweller

SHOPS:

http://www.etsy.com/uk/shop/ThePaprikaJewellery

 

Chronic Illness Bloggers