Tag Archives: support network

Spotlight on the fundamentals of the Infinite Dreams Collection!

Writing this blog allows me to raise a spotlight on the fundamental aspects of my Infinite Dreams Collection. It’s not all about jewellery designs so I wanted to share with you how the poem and designs linked to self care and acts of kindness. As I considered my core beliefs for my loyal customers and supporters it developed into this…

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Spotlight on the fundamentals of the Infinite Dreams Collection!

Having chronic illnesses affects everything, especially my relationship with Joel and the boys; which has only become stronger. The boys, Joel and the rest of my support network inspired the poem and the designs.

As I thought about my own experiences with chronic illness and mental health, I realised I had an insight into how many of my customers were part of other’s support networks. So many are either looking out for someone with chronic illness or someone who deserves a boost.

My love of helping others meant I was able to create a range dedicated to gift giving and valuing self care. An infinity range was the ideal choice for launching my new look shop aimed at care givers/friends of and those with mental health and/or chronic illnesses.

My very first collection had been on my mind for a while so when I needed time out for 3 major surgeries last year, it gave me time to consider the purpose of Paprika Jewellery & Accessories. I wanted to take it to the next level. I used my time out to train in everything handmade business related and I learnt so much!

How Chronic Illness and My Family Enabled Me To Dream

Becoming chronically ill has encouraged me to dream and I’ve worked hard to turn those dreams into reality. Chronic illness has enabled me to build even tighter knit relationships with my boys and a much deeper connection with my husband. They keep me grounded and empower me to to be the best I can and to live the best life I can.

They’ve encouraged me to keep going even when the battles I’ve faced have been beyond tough. They’ve helped me believe in myself again and to use my limited energy to keep pushing towards my dreams; when many would want to give up. Their support has made me feel less guilt about choosing to only give my time to true friends.

The McKee family at our favourite restaurant in Brighton

How my amazing friends inspired this new collection

When I decided to make a jewellery gift for one of my true friends after about 9 months of time out for 3 major surgeries, I had a moment. I was drawn to using an infinity charm in the necklace I was making for her and the phrase ‘Infinite Dreams’ came to me. I knew this was a sign and that simple necklace inspired me to create more using this idea.

I began to explore what the idea of infinity meant to me and why that charm was so perfect for my friend. When I look at her, I see strength, loyalty, honesty and empowerment. This lady is a fierce warrior with a chronic illness, who puts everyone else’s needs before her own. I realised why these characteristics led me to the infinity symbol.

As I researched more about the infinity symbol, I discovered how many of the designs link to the importance of your roots and the interconnected branches of a loving family. As my own family have my heart and fill my soul, these symbols became even more powerful.

The Infinite Dreams collection became cohesive, reflecting all the qualities in beautiful designs. The designs are made to empower and protect; to show unconditional love; the strength of empowerment and support from your tribe despite any battles you face.

A sunset with 2 silhouettes holding out their arms and forming their hands to make a heart when they touch.
Infinity means loving and living with your tribe
Photo by Pixabay on Pexels.com

Infinite Dreams

Infinite Dreams was ideal for creating a poem around the meaning of infinity and the symbols that represent it. The verses are based on each of the main symbols and references I wanted to include in my collection. I’d been dreaming about adding poetry into my creations for Paprika Jewellery which made me so excited for this.

The poem is the heart and soul of the Infinite Dreams collection. I’ve built the full extent of the designs around it. As you can imagine that the collection is brimming with infinity symbols, celestial charms and celtic symbols of infinity, such as the celtic knot and the tree of life symbols; which I’ve explained below. Mostly it’s just an inspirational poem for you.

Every purchase from this collection will come with a free postcard that I’ve designed with a verse from this poem. The verse will link to the symbol used in the design. I hope to eventually spread this system to all of my designs so I’d love any feedback. Just email me at paprikajewellery@gmail.com.

Glowing shadows mature in an eternal scene,

Sheltered support where branches intervene.

Through myriad roots emerge infinite dreams.

Sparkling raindrops creating a lustrous sheen,

Showered by the abundance of hope you have seen.

Through myriad shimmers emerge infinite dreams.

Comforting warmth embraces you from dire fears,

Engaged virtue by way of the strength of tears.

Through myriad wishes emerge infinite dreams.

Shooting stars spread in a cosmic grandiose scheme,

Stunned by the extent of your soul’s graceful gleam.

Through myriad flickers emerge infinite dreams.

Sleeping on rainbows, sewn with love at the seams.

Scattered crumbs from everlasting sunbeams.

Through myriad colours emerge infinite dreams.

Continuing loops knitting life, interweaved.

Unconditional love, yet seen to be believed.

Through myriad spirals accomplish infinite dreams.

By Laura Mckee ©️2019

I really appreciate your continued support and am pleased to share this with you today. However, I must remind you that this poem is under copyright. Please do not share, copy or print this image or wording for any purpose.

Collection poem meaning

The Infinite Dreams poem represents the hopes and dreams I see in my future. As this poem was the basis for the collection that would mark the reopening of my shop, it was very important that it meant something to everyone. The designs are from the symbolism used to represent eternal connections.

Infinity Symbolisation

There are many interpretations of the infinity symbol, based around there being no end and no beginning. The circles represent a never-ending attachment, such as everlasting love or a vivid connection. It’s been used for centuries with these other meanings.

Modern interpretations are that the interconnecting circles represent each side of a relationship; cementing the idea of being ‘together forever’. The symbol used in Celtic knot designs has interlacing, continuous patterns showing the continuity of life and the double infinity design means “double absoluteness.”

The Celtic theme continues with the Tree of Life, the branches and roots joined by an endless circle. This symbolises the connection of heaven, earth and all living things. A tree starts as a seed, grows, reseeds and begins the cycle again. The roots are the bond we have with our family and ancestors – representing the circle of life in all things.

Other meanings behind the symbol represents perfection, duality and empowerment. It also stands for the equality between men and women and has been used by the UN Development Fund For Women to reflect the message of endless possibilities and empowerment for women.

In the Making

As you can imagine, it was busy, exciting and occasionally chaotic in our house as I got getting ready for this launch. I couldn’t have done it without Joel’s help, especially with the photography. It’s been great to get back to making but being able to put into practice all the things I’ve learnt whilst recuperating, has been satisfying.

There are boxes brimming with beautiful Jewellery and we’ve had a semi-permanent photo studio set up in our front room with all of my updated props. We intend to photograph all of my stock once I’ve recovered from the launch – the reason this blog has taken me a while to finish editing.

I’ve been busy tapping away on the keyboard as I update the whole shop and tell my story so it’s important to the whole shop. I’ve written my new listings using everything I’ve learnt about sales and loved every minute of preparing to share my first ever collection with the world.

I’ve been sharing sneak peeks along the way but I wanted to show you my workspace. As I’m mostly stuck in bed, this is where I create. I used to have a craft trolley next to my bedside table but it used to get so messy! Joel suggested this gorgeous unit so I have a neat working space to keep all my goodies in.

Who Is The Infinite Dreams Collection For

The designs are for the fierce warriors; loyal friends; honest wives/partners and women of your family who have your unconditional love, including yourself. I want the designs to remind the wearer of the endless possibilities awaiting them if they don’t let life’s hurdles hold them back. I want the collection to inspire and empower.

All in all this is a celebration of love, family and equality. I want people to see these designs as a way of celebrating life even if there are barriers to achieving your dreams. The most important thing to remember is that although this collection is based on infinity we do only get one chance in this life so look after you and reach for your dreams today. ♾

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My Etsy shop The Paprika Jewellery aims to support positive thinking by creating designs from positive themes and provide inspiration. Visit today for luxury jewellery & accessories from and for the soul. Positivity for you now and hope for a vibrant future. 

Haven’t visited my Etsy Shop yet and have FOMO? You can still check out all the Made To Measure, limited edition and one of a kind goodies from my Infinite Dreams Collection. See the whole range by clicking on this link now. ➡️

If you like what you see in the catalogue or Etsy shop you can get a 15% discount code by signing up to my VIP access area.

You’ll also get free access to my resource library and I’ll send you my Free Journal Prompts with positive lines from my poems. Just sign up to my occasionally regular newsletter today. Click this link now 🔁 Strength of Tears & Paprika VIP Access

Chronic Illness Bloggers

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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! Go on, you know you want to! 

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Confessions of a Bed-bound Mum Surviving Without Energy

Woman in grey vest and pink trouser sitting in a white bed with a laptop open. Bottom third in green saying Confessions of a bed-bound Mum
Confessions of a Bed-bound Mum Surviving Without Energy

What I need to confess

I often get asked how I cope with constant pain and Joel is asked daily how on earth I keep so positive. I even ask myself how I do this whole Mum act whilst being stuck in bed 85% of the time. So I’ve decided it might be time to confess that…

  1. I’ve been rejected and accepted for living in bed
  2. I’m not always positive and productive because I’m always in bed
  3. Stuck in bed with no energy, I honestly don’t cope
  4. It’s humorous how some of my ‘stuck in bed’ care is curious
  5. I realise my support network helps me survive being stuck in bed

Woman with black curly hair laying in a fetal position. She looks sad or hurt and has pulled the cream sheet up under her
Photo by Paula Lavrador

Just in case you thought I’d gone all Negative Nelly on you here, I haven’t, This post is about surviving!

But there is contemplaining in this post. I’m owning the hidden side of the warrior: the thin skinned; dirt dishing; ranting foot-stomping anti-hero. I’m owning up to my inner 5 year old, throwing her toys out the pram!

I hide my negative side, but if I’m being open about living with chronic illnesses, then I have to admit I’m not always positive and that, my friends, is okay. I need to learn to say to myself that it’s okay not to be okay, too!

Being rejected and accepted 

If you knew me before I became the brain diseased Laura, then please know that I probably don’t mean you as I have a cathartic moment here (unless it is you). Then you have a choice to make – contact me or fly away for good! Harsh I know, but…

When I first fell ill and could drive, make my own lunch and put my kids to bed; most people stuck around. But when I was so ill I couldn’t get out of bed, things changed. Some have shown where their priorities are, so if you’re waiting for me to contact you, then bad news – I won’t be. I’m too stuck in bed, in pain to do that! 

I don’t miss anyone that chose to leave my life, as such, but their selfish actions still play on my mind. What hurts most are the life event friends (marriage, babies etc.), those I thought of as close friends who no longer want to be there for me. It sucks to admit that, but I have to use my energy on my friends that get it.

I love the friends that stuck around when this disease started eating away at the Laura I was (I’m mostly all there now); the friends who’ve never doubted me. I can’t tell you how much I appreciate them accepting me as I am. Thank you to those of you who don’t bat an eyelid when I cancel plans; for sitting on my bed with your legs up, getting your own drink, listening when I ramble on and telling me off for doing anything, like that’s normal. You keep me going on the dark days.

For my full story read this: Learning To Live One Day At A Time – My story so far

*Disclaimer – this will not be as good as The People v OJ Simpson  – True Crime Story

I’m not always positive and productive

Bert smiling in his pinstriped suit, hat and white gloves, adjusting his blue bow tie. He's smiling at Mary Poppins who is dressed in pink with a pink hat and also smiling.

I wake each day hoping to do so much, but I just don’t have boundless energy. I do feel like I’m betraying you by even hinting at negativity when I push for positive energy so much. But, let’s be honest, no one can be positive every second of the day; unless they’re ‘Cor Blimey’ Bert or Mary Poppins.

However, life as a bed-bound mum is pretty shocking really. I try not to think about it in the grand scheme of things, so I fill my day with distractions. But despite knowing when enough is enough, I struggle to act on what my body is telling me. I’m in constant pain, whether in bed or seeing friends; so despite being so ill I’ll push on.

Genuinely I often feel uncertain, not knowing how I’m going to feel each day. Sometimes I can’t even guesstimate my pain level on waking, as it can change in minutes. I plan my day ahead but I’ve learnt to adapt plans. However, this is when I can be unproductive and it can result in one of these things happening:

  • I force myself through the day, thinking it will pass
  • I keep busy but end up not finishing anything in my planner
  • I forget about the one thing that does need doing
  • I don’t meditate or give my mind some space
  • I don’t move much – no bed yoga or even my physiotherapy exercises
  • I rest all day and let go or I just get really bored
  • My body decides to sleep all day, so I get nothing done

Red misted forest background with a quote by Albert Camus saying 'A Guilty Conscience Needs To Confess. A Work Of Art Is A Confession'.
Guilt for no reason is hiding anger at oneself

I find it frustrating and have so much time to think, stuck in bed day after day. I do have a Guilt Goblin that chips away at my self belief. The trail of red mist lingers with a sour taste of culpability. My self anger can last for days, but Joel’s my knight in shining armour who kicks that spurious fiend back to the Goblin Gaol and curbs the self sabotage.

I feel a little dishonest about only just opening up about how dark some of my days are. I’ve not tried to hide it, but my naturally positive outlook means I bury the negativity. I know the only person putting pressure on me is me, so now I need to find balance by permitting myself to let that anger out to break the goblin’s curse.

With no energy, I honestly don’t cope 

I admit that I feel drained and rough around the edges but I have some control so I can cope. I’m scared that If I allow myself to feel negative, there would be a BOGOF deal on. I’d end up with a double negative and they don’t do nobody no good!🙈

The problems which arise for those of us with chronic illness come with fat globs of failure and guilt. It can be overwhelming even though these feelings aren’t validated. I can use up more energy fighting the dark days; instead of saving it for better ones.

So I’ve realised that if I let myself rant, I can save my mind from splintering. My safety net is in the power of words and if I put my energy into going full James Joyce mode, letting my thoughts flow on to the page, I may make some brain space. I admit  it’s exhausting to let buried guilt free but I have to, before it poisons my future self.

To be able to cope with it all alone is too much and it isn’t fair to transfer all the pressure on to Joel. So even though it’s hard to do, accepting help has allowed us all to use our energy wisely. I can focus on being a mum and we can focus on family life.

A woman sitting criss legged on a bed in a dark room. It has one window with a blind down.
Confessions of a Bed-bound Mum Surviving Without Energy

Some of my care is pretty curious

Joel and the boys are still my main carers, even though they’re unpaid – shh! They still manage to make me laugh every day, often about my own care needs! Doing that constantly is too much to ask, so I have two Carers that help me on weekdays.

Helen and Sam are both very different characters on top of knowing my needs, we  have a good giggle most days too. They do pretty standard physical care, such as making sure I wash and eat. But they also have to cheer up a lonely, bed bound 41 year old who lives in the dark, the literal dark and sometimes the dark filled mind! 

Helen’s a gentle soul and brings an air of calm with her. She seems to have the ability to make me say and do sillines and I think I make her laugh most days! Sam’s a more recent addition to the team. She gets everything done, despite her clumsy limbs and we giggle our way through most days. She’s also owns being weird and I love that!

I’ve let you in on some of the darker sides of being a bed bound mum, so now I’m up for sharing what goes on beyond the scenes, why all of my Carers need to be on it with me and maybe have a little bit of crazy about them too… in a good way! 😜

  • They have to make sure I’m safe, especially using the walker around my room as I get over confident thinking I can do it, but I don’t always see the collapse coming or Sam falling over it herself, when she brings the extra kooky. There’s a need for me to have constant reminders not to bend over to pick up everything I drop. If I had £1 for everything I dropped each day… I’d have to um… give it to everyone that picks it up for me I guess. Then there’s my lifeline, the bane of my life. It makes me feel soooooo old, but I have had to use it once, when I fell in the shower. My boys and a carer, who’s moved on now, were here but there was a  problem as none of them responded! They all thought the noise was something other than my lifeline – a phone message or a dial tone!!
  • Doing the laundry is always a big job of washing, drying, folding etc, but I’m quite particular and my funny ways get muddled up when 3 or 4 people are doing the same job. I want some clothes rolled; my towels must never go out on the washing line; I have a specific drawer system and I like my clothes hung in a certain order. And that’s me not even me being picky! The funniest thing is that Sam often puts my clothes away inside out. I don’t really mind but one day I mentioned it to Helen. When she left, I saw that she’d put the sheet on my bed inside out and thought I wouldn’t notice – as if! As Joel puts it, he doesn’t give a shizz (sort of), but he knows how much it bothers me as a weirdo! 
  • Any carers that work for me have to know how to make me a smoothie – it’s the law! They have to understand the love for coconut anything and avocados in everything. They have to know how to use maca, baobab and cacao powder and the joys of mornings and spirulina (they stain everything green!) They have to have the patience to clean my bamboo straws and make the occasional smoothie bowl. Then they have to remember every ingredient they’ve used so I can put it into my weight loss app. I’m not fussy or anything, I just don’t have an appetite and lots of deficiencies. They have to remind me to eat 3 or 4 times! 
  • I’m used to a room full of chatter and do like a natter. I don’t mind alone time, but I just need a little bit of life to break the boredom of living in one room all the time. However, they only have a short amount of time here so they have to get used to having to tell me to shut up 3 or 4 times and have often been found backing out the door while I keep talking.  Then they have to make it out as fast as they can before I start calling down the stairs at them! They also have to try and follow my crazy brain and plot twists before reminding me what my point was or whether to just go with it! 
  • Then there’s the wheelchair – the fun of fitting it in a small car and putting it together without trapping the seat belt in the wheel (so many times 🙈). If we get to that point, it’s not as simple as it seems, then we have to make sure that we’ve parked where I can actually use it or not. Sam’s been a carer all her life but my boys do a better job driving!! 😂 Firstly she parked right next to scaffolding which made the path too narrow. Then she nearly toppled me out down the curb with no attempt to reverse. I shrieked in time and she managed to bump me over the metal ramps instead. When we arrived at the tearoom, she parked up and we ended up playing musical wheelchairs as we found out it was booked up. When we tried to get away we were already in hysterics as a couple had watched the full show from their outside table. He ended up rushing to help when my wheels got lost in traction over the cobbles and went into wheelspin. We ended up going back and driving to an alternative!
  • Then there’s the alternative remedies, Mindfulness and meditation. They bring me a herbal tea when they get here, but not if I’m meditating – then they have to leave me be for a bit longer. They have to understand bed yoga in case they walk in and I’m doing some strange movement. They have to get used to my essential oil diffuser and the coconut oil that goes on my body hair and  in smoothies. And then, only then, do they get to embrace the world of the miraculous Migracap as demonstrated below- an ice hat to help with the pain.

Laura sat in the car, wearing a brown coat. A black Migracap (hat with ice packs at all pressure points) on her head with a very pale face.
Me in pain in a Migracap.

I’m sure there’s more, but the main thing is that I’m surviving and they support they give me enable me to be a good mum. 

Read more about what I get to up to in my days here:

A day in the life 

I realise my support network helps me survive

Mix the combination of Joel and my boys with Sam and Helen and I have the perfect mix. I haven’t always had it easy with finding the right carers, but Sue who owns the caree agency is a very good friend and we’re all happy, she even comes in sometimes. I’m so lucky to be able to call my carers friends.

I can confide in both Helen and Sam and that is a crucial part of my care, especially on the darker and more painful days. Also, I’m still youngish so I need to be able to be friends with the people rummaging through my knicker drawer!

The vital role my friends and family play in my support network is crucial. I’ve spoken a lot about my friends in the past and how important their role is. Nothing has changed. Those friends that made the choice to stick by me are the people who keep my spirits lifted. 

I can’t talk about my support network without mentioning my Dad. He’d stay over when Joel was away from work, until recently. The boys have now taken on this responsibility. He still takes Youngest to swimming lessons and will be there for music lessons, engineering club and anything else pick ups, at the drop of the hat.

With all this support, I know someone will be there for me, whatever, whenever and wherever I need. The role each person that stands with and by me my through my journey is what helps me to do more than survive with this rare disease. I thrive!

The most important thing anyone in my jigsaw of support can do is to make sure I preserve energy for mum duties. They will all tell me off for talking too much and if my pottymouth alter ego is allowed out to play, well… I think I may have a sense of humour. I think that answers the how I cope question. You have to find the funny! 

Lastly…

It feels good to admit that I’m not always positive. I imagine you’d guessed, but if I didn’t feel safe from the support I get, then I wouldn’t be able to admit it and own it – well nearly. Getting better at understanding my lack of energy is an on-going study, but I’m learning that if I stop comparing myself it helps. This all helps me cope.

The support I have is undeniably what helps me be a great mum.. bed-bound or not. Those Friends, family members and Carers that form my support network are like the special shells that whisper in my ear at the end of every day that I did it. That I survived even without boundless energy and that my kids did even more than that!

What helps you cope with chronic pain or illness?

Chronic Illness Bloggers Continue reading Confessions of a Bed-bound Mum Surviving Without Energy

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

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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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Mental Health Awareness Week-Thriving against the odds #mhaw17

Did you know that those with the most common chronic health conditions, are 2-3 times more likely to have mental health problems? The prevalence of mental ill health is most prominent in those on low income, young adults 18-34, females or those living alone. Mental Health awareness week 2017 is here and I want to write about how I do more than just exist, despite the adversity I face because of my chronic illnesses. I hope that by sharing my experiences; I can help you recognise the steps you could take to improve your mental health, whilst dealing with chronic illness. I want to help all of you take steps: TO THRIVE AND NOT JUST SURVIVE. Learn more about the message from the Mental Health Foundation.

What daily steps could you take to make life more positive? What strategies can you use during flare ups or difficult times? How can you feel confident that you have the toolkit to thrive? I will share some of my experiences and strategies that I use  to thrive, despite constant high level pain, which leaves me in bed about 90% of the time. If you’d like to know more about my illnesses (Migraine and IIH-a rare brain disease that mimics the symptoms of a brain tumour) then please read this.

Before you read any further, I want you to make a choice. Which path do you want to choose-a) ignore your feelings, taking no responsibility for your emotional wellbeing; b) wallow in self pity, moaning about life; or c) take steps to make the best out of a bad situation? If you choose a or b, then I suggest you won’t gain from reading any further. If you chose c, then I will do my best to help. There are many ways to deal with mental health problems; this blog is purely my own opinion. Please seek medical attention if you are self harming or having suicidal thoughts. There are no quick fixes here, but in order to move forward then you will probably need to seek some form of professional help; if you haven’t already. 

SEEKING PROFESSIONAL HELP

I have had counselling prior to becoming ill, after we nearly lost our second baby at birth. Because of this, when the magnitude of my current situation hit me; I was quicker to react and smart enough to know that I needed help. Living with chronic illness means that you usually grieve for the old you. Therefore, it is likely that you will need some form of professional support; such as counselling or CBT. Chronic illness also impacts on everybody whose lives are affected; particularly close family. If is now 4 years since I was diagnosed with IIH, but I continue to actively seek help. Most recently, we felt that our family would benefit from group therapy. This time my husband was the brave one and sought help. At the time, I didn’t realise how hard he found it to reach out, but a few sessions in and we are all feeling the benefits.

Steps to improve your mental health

My first question for you is what do you love to do? What do you spend most of your time doing or thinking about? (Keeping it clean and legal of course). I love to make others happy, particularly my husband and children; but, I’ve always felt the  need to go beyond that. Before I had to give up work I was an Early Years teacher. My passion was making those children smile as they learnt. To see the children run out to their parents at the end of the day, bubbling with chatter about what we had been doing; was my life’s purpose! When I had to stop teaching, I felt utterly lost. So, one day I I realised I needed a new purpose. I decided to use the skills I had learnt during a silversmithing course and my love for writing. I decided that, despite my constant pain, I had to make the decision to make the best of an awful situation. I now write this blog and poetry for myself and others and I run my own jewellery and accessories business Paprika Jewellery & Accessories. So, if you’ve read to here, you’ve probably made that decision too. Take your time to think carefully about what makes you happy. It may take time, but hopefully you’ll find a renewed sense of purpose. You can do what you love, despite being ill. 

This was my first step along the long and winding path, towards thriving with chronic illness. At first, I felt guilty about  crafting, when I was off sick from work. However, it actually distracts me from the pain and I soon learnt that my social workers and GP understood how important it was for my mental wellbeing. So, don’t be put off by feelings of guilt or by feeling overwhelmed. It doesn’t have to be a big thing and you don’t have to make it more than a hobby. You could take up photography or journaling. Ask yourself this: wouldn’t it be nice to do so much more than just coping with your illness? 

HOW TO COPE DURING DIFFICULT TIMES 

I want to be clear that I am not saying that everything will be a bed of roses. There are going to be dark times; that is expected and it’s ok to take time out, to do whatever you need to do, to get through those days. When I’m low, I talk. I talk to my amazing friends, both local and online. Online support groups are a great resource, but they do need to be chosen carefully; some have a negative atmosphere, which could do more harm than good. It may take time to find the right one(s). I have made amazing friends in my carefully selected support groups, others who get it. I also benefit from a group for women who want to live a worry free life, which has helped develop my toolkit immensely. All the groups I’m active in, have a positive and empathetic ethos. It’s taken time to find the right groups and the right people. I have left groups which don’t fit what I’m looking for (that in itself changes),  so it is a case of trial and error. In very dark periods, I reach out to my GP. Acknowledging that you’re finding things tough, can, on its own, help you out from under that dark cloud. 

THE TOOLKIT TO THRIVE  

I set myself a goal at the beginning of the year and break it into manageable steps. I keep a Pinterest board to help me to  revisit it. I also use a diary and in erasable pe, I write 1 or 2 goals a day. If I can’t do them, then they can be rubbed out, so there is no feeling of failure. I also ensure that I think about or write at least 2 positives from my day; usually on the positive post in my Conscious Crafties community; which I set up and is now posted daily by a rota of lovely members. I also try to meditate or use relaxation methods each day  These are the main tools I use, but you will find your own. 

I want to properly introduce you to the biggest influence on my emotional wellbeing-my husband and best friend; Joel.  

Joel is my main carer and I am so proud of him, as he is now the face of Carers for Lloyds Banking Group and a co-chair for the Family Matters strategy across the whole bank. This week he told our story and how my illness impacts on our family’s mental health. In the article, Joel talks how he has retrained his brain to help himself, me and our boys; look after our emotional wellbeing. He writes about the simple act of ncouraging me to recognise my daily achievements; even if it’s just managing a shower. He also talks of how he helps himself and our boys (11 and 13) assert a positive outlook, by asking them on the way to school: “what are you looking forward to and what are you hoping to get done today?” He also wrote about our use of a positive jar, which you can find more about here.

Our story is helping people and inspiring others, clearly seen in the comments about the article. Here are just a few quotes from his co-worker, after reading the posts.

“I like the idea of a positive jar and will try this at home. I have a 14 year old daughter struggling with anxiety issues at the moment….I hope this idea will help her.”

“Your positivity is really inspiring and some very practical advice.”

“What an amazing family you all are. I really like how you acknowledge the realistic things.”

As well as ideas mentioned above, we use the wide-ranging toolkit that I gathered in my teaching career; Joel brings extensive managment and leadership skills and our boys bring their astoundingly mature points of view and striking honesty about what they see. We ensure that there is no blame put on me about our situation, (inevitably I still feel guilty-but hey, I didn’t say we’d cracked it). We also make time for a monthly family meeting and a monthly afternoon tea. 


In conclusion, I know that I am lucky to have a wonderful family to keep me positive, however, there is always support for you somewhere. So, start your positive mindset today by thinking about what makes you happy. If you use visualisation techniques then this would be a great way to spend a good amount of time to think this through. Emotional wellbeing is often overlooked by all of us. For those of us with chronic illnesses it is even more important to try and work on building resilience, flexibility and resourcefulness. Please write in the comments if you find any of this particularly helpful or you would like more information on something specific. I am always happy to help, but please bear in mind that I may take longer to respond if I am having a flare or taking some time out.