How Brain Disease Promised Me Quality Life Opportunities

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.

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

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

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

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

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.

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 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

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.

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?

Join my VIP mailing list today and get 15% off your next order at The Paprika Jewellery. Get free access to my resource library & download my Free Journal Prompts with positive lines from my poems now https://mailchi.mp/e35f39e6a929/paprika-strength-of-tears-news

✋ 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! 

5 Secrets for a Strong Relationship with Teenage Carers

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

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!

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

 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

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.

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

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!

Click Here To Sign Up Today

✋ 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!

My Not So Secret Poetry Diary – A Date with Anxiety #copingwithanxiety #poeminspiration #mentalhealthblogs #chronicblogger

My Date with Anxiety

It’s been a tough ten days in my chronic illness warrior body, so I wanted to share with you some of the things I’ve been feeling – eek, it’s time to get real peeps!

I’m going to reflect briefly on what’s been happening to my body and mind each day. But hey, remember this is me writing so, even though I’ll be totally honest, I’ll make sure there’s a positive to everything! This is the story of my Date with Anxiety.

I keep a diary (not a journal) and use it to pace my daily activities. Randomly through the year I write little notes of my strengths and personalised affirmations. Then in the evening I write 3 positives from that day.

Friday 7th December

I couldn’t sleep last night, it’s been disrupted all week, but this was next level. The pain was intense and relentless and I couldn’t understand why. A friend visited me yesterday, which had made my day. She never stays too long and spotted when I was flagging. I hadn’t napped either so I expected knock on effects, but why was it SO bad?

At 3:30am my heart started racing and I was breathless and dizzy – losing control. This panic attack came out of nowhere!. I got up to use the en-suite and collapsed, but my amazing husband Joel woke immediately and rushed to my side. Then he hugged me tight, that hug that let’s me know I’m not alone!

I ended up taking a strong dose of diazepam, but I still didn’t get much sleep and when my carer arrived at lunchtime I was stressed, overwhelmed and exhausted. She took such good care of me and was extra gentle, seeing me so poorly. I recognised at the end of the day that I’m a very lucky lady to have such wonderful souls looking after me!

Saturday 8th December

Hardly any sleep again last night! The meditation and breathing techniques I normally use didn’t help and the day was littered with panic attacks, feeling like I couldn’t breathe. I was on full anxiety alert. Thankfully Joel was amazing with me through it all again and encouraged me to go downstairs for a change of scene.

Before going down I had a shower which was an accomplishment in itself. I still had panic rush up on me again and I just wanted to run away! But Joel guided me through it all, holding my hand I calmed down. Eventually, drained and emotional, I managed a 10 minute nap watching TV, on Saturday evening and finally got some relief.

I’ve not had a flare like this in years!

Sunday 9th December

I’ve managed to sleep much better at last, but I feel battered and bruised from the state of alert my body’s been in the last few days. I know my brain has had the acute stress response or fight or flight. This is exhausting as despite having a large toolkit for dealing with stress, I’ve struggled to access these strategies whilst in a state!

I’m being kind to myself today and have prioritised getting downstairs to be around my boys, so that they can make me laugh and help me heal. The mental bruises take just as long, if not longer than physical to heal, but I’m slowly building myself back up.

This link explains what might happen during a panic attack.

Monday 10th December

I’m still feeling fragile today, but at last my body has decided to catch up on some of the lost sleep. I’ve cat-napped all day, with a little break at lunchtime when my carer arrived. I have no idea what we were talking about but we were cackling away! Joel was working downstairs (a little cushion for me – knowing he’s around even if he’s busy) and commented on the cackling as soon as he did pop upstairs!

Now that I’m trying to process my feelings, I was brave and decided to write a poem about the feelings I experienced. It’s important to reflect on any kind of anxiety attack however you do it, but sweeping it under the carpet won’t help you in the future!

Tuesday 11th December

I finished the poem this morning when I woke up early. Most of my poems are at least started when I’m either not getting to sleep or waking early. This was an early morning finish! I love creating the poem on a lovely background, using stock photography, which is perfect for sharing on social media. I loved the reaction this poem received!

I also chose to explain a little about what I’d been exploring when I wrote this poem. However, I’m not yet used to being so open about my own mental health whilst I’m still fragile. But I’m committed to raising awareness and always think about the fact that what I write might help just one person!

I talk about my anxiety levels rising as the lack of sleep and increased pain added up. But although I’m drained, I do have a strong mental health toolkit – full of strategies that I practice regularly. I know how to use these help build myself back up. Knowing that I’m my only priority in this instance is key to bouncing back!

Well, I thought that I’d got my groove back as the week went on but I’ve struggled again the last few nights, especially last night when I managed about 90 minutes all night. Thankfully I dozed all morning, catching up a bit on all that lost sleep from pain. However, I’ve managed to keep the anxiety in a box by using my toolkit. See below…

No mental health blog is complete without a few top tips.

If you or someone you know suffers a panic attack, try these tips!

• Exercise

Exercise is one of the quickest way to deal with the raised stress levels that come with a panic attack. My physical illness stops me from going for a run (think flight…), but I can do some bed yoga, even though I take it even more carefully than normal! Some good stretches and shoulder rolls are a great way to shake it off!

• Talking through the experience

A panic attack is our body’s way of telling us we’re in danger. It’s unlikely you’re in any danger, but tight chests and trouble breathing are all primal reactions to danger. This can trick the mind, almost like a tripwire. So rationalise and talk your physical feelings through with someone. The more you practice, the sooner you’ll interrupt the signals between the brain and the body and if you do this when you’re not in the acute stage, the quicker your training will kick in when you do feel anxious or panicky.

• Laugh, Smile and spend time with your loved ones!

What can make the stress disappear more than having fun with your friends and family. Make time for each other, put down your phones and other technology and talk. You’ll notice how often I talk about being with Joel and my boys. They make me laugh out loud every day and the feeling is mutual. It’s one of the strongest things we have as a team and we are definitely the reason for all of us usually coping so well!

• Relaxation and Mindfulness

I talk about meditation and mindfulness in most of my blogs because they are the easiest ways to relax. You can train your brain to take it slowly and/or meditate daily so it calms and controls your breathing. Then you automatically have these skills to help you relax during an anxiety attack. Body Scan Guided Meditations are ideal (search YouTube) and I are some of the easiest meditations to start with. You may find that something else relaxes you, such as taking time to be present or sitting in nature.

I hope that this sneak peek into my world has helped give you an insight into panic attacks and how they can come about. I have let you in to these thoughts because I believe that mental health is as debilitating as physical health can be. They are also often intertwined and life can be tough and lonely if you keep it all inside. I feel very strongly that sharing my experiences is vital to ending the stigma that surrounds mental health. I only discuss this to raise awareness, I’m not seeking sympathy!

If there’s one thing you have learnt from my Date with Anxiety or one thing that you can take away to help yourself or your loved ones, then please let me know in the comments. I’d love to hear from you.

**AND if you’re not affected directly, then please remember that you never know what someone is going through, so please take the time to listen and talk to each other!

I’ve referenced these websites and blogs whilst writing this post:

Anxiety and Panic Attacks- Mind.org

6 ways to switch off the fight or flight response

Understanding the stress response

How the flight or fight response works

Why I’m done with online support groups for chronic illness! #chronicillness #chronicblogs

If you follow my blog you’ll know that I’ve been very active in a variety of support groups since becoming chronically ill in 2014.

So why the change of heart?

In nearly every group I’ve joined, there’s been a culture of drama and/or negativity. I love to support others, but my health was suffering by getting too involved and I realised that I was done with being an active group member. I have left most groups, so I want to explore online support groups and share my experiences.

What is a support group? 

• A face to face or online community open to anyone, but often focused on specific topics i.e. mental health or pain conditions
• Led by a professional facilitator, such as a nurse or counsellor, or by group members/founders
• A comfortable space where individuals come together to share their stories, experiences, feelings, coping strategies and information.
• A way to help reduce isolation and loneliness by realising that there are others dealing with similar situations.
• A bridge between medical support and self-help

Why I joined online support groups

Rewind to when I first fell ill. I was isolated and lonely as friends began disappearing from my life. I was struggling to understand my illness and my mental health was suffering. When I joined an online support group, I realised I wasn’t the only one with my diagnosis, which helped my mental state. However, the negativity in the group exacerbated worries about my future. I decided this wasn’t the group for me.

So, I joined an open group called Mission Migraine. It was full of amazing women and had a positive vibe, yet we all supported each other. What I loved most, was the we shared our own stories to raise awareness and challenge misconceptions.  I was proud of what we were doing, so I started the Twitter account @migrainemission to continue raising awareness. Sadly, the Facebook group is no longer running.

Finding the right fit

I knew that Migraine wasn’t the full picture, so I explored a variety of groups to help me understand what was happening. I connected with other people with similar symptoms to my own, in well led groups. I was able to access information to help me research possible causes of my symptoms. In one group, I read about a consultant in Cambridge, specialising in Pulsatille Tinnitus. This was a pivotal moment in my journey! If you don’t know my story, then you can read it here.

When I was initially diagnosed with a rare brain disease, Idiopathic Intracranial Hypertension (IIH), I joined IIH support groups, which helped me find information and reassurance. Soon I became overwhelmed by the number of Facebook groups I was in, so had to decide which of these were right for me. I left those that weren’t. I’d found more friends who totally understood my pain!

When it no longer does what it says on the tin

In most groups I joined, I’d encourage positivity and try to raise confidence levels. I’d post inspirational quotes, share knowledge and helped other’s learn to celebrate the smallest achievements. Helping others gave me a sense of purpose and achievement.

But I couldn’t get away from the drama.

Members of support groups are vulnerable, with many suffering with unrelenting pain, crippling anxiety, financial or family worries. This creates a breeding ground for negativity and arguments. If this disruptive behaviour isn’t dealt with effectively, then the group is no longer able to support it’s members and is not fit for purpose.

As an empath, I’m susceptible to getting  too involved. I gave so much, but my physical and mental health were suffering. What I was getting out of these groups now? I’d had enough of group politics and feeling responsible for near strangers. I worried I’d lose friendships, but when I did leave I was flooded with relief. And of course, my true friends have stuck by me.

Would you benefit from an online support group? 

I may find a group that’s right for me again one day, but next time I’ll do my research first. Here’s a list created from personal experience and research. (See below)

Pros

1. Gaining self-worth or a sense of purpose
2. Feeling less lonely or isolated, especially for those who may not have access to face-to-face support groups
3. Getting support in times of stress, depression or anxiety
4. Being anonymous allows you to vent or discuss feelings openly and honestly
5. Staying motivated to manage your physical illness or mental health
6. Gaining control of or feeling hopeful for the future
7. Raising awareness of invisible illnesses, disabilities or a specific disease
8. Getting practical feedback about treatment options, benefits or worker’s rights
9. Feeling empowered by supporting others or working successfully in a team
10. Accessible when it suits you, even in your PJs, leading to more participation

Cons

1. Peer to peer groups are probably be run by unqualified members, who are also unwell – vulnerable people supporting other vulnerable people
2. Increased negativity due to constantly discussing aspects of your illness or disability
3. Interference on posts with unhelpful comments or incorrect information
4. Written communication means that inference or tone can be easily misjudged
5. Participation online may compound isolation from other friends or family
6. A lack of control over medical advice, quality of information or criticism of health care services/professionals
7. Reinforcement of negative emotions and negative remarks to other participants
8. Disruptive group members may dominate the conversation, cause tension or create interpersonal conflicts
9. Comparisons of whose condition or experience is worse
10. Possible use the environment to prey on vulnerable members

What is needed to create a good social support network? 

• Those running the group must be very clear about what support is available and when.
• Clear rules covering: disruptive behaviour, sharing medical advice and discussing medical professionals.
• Conflict needs to be handled professionally.
• A positive environment, that’s nurtured and monitored so that people feel listened to and that other members will show empathy and be supportive.

Do online support groups work? 

The disadvantages of online support groups are discussed by authors and healthcare professionals. Concerns about the quality of information, criticism of health care services/professionals and reinforcement of negative behaviours are certainly valid. However, this study. of online groups for those with physical illnesses, found that concerns about the risks of online support groups are not always justified.

In my opinion, there is increased risk in online peer-to-peer support groups, as those facilitating the group may be vulnerable due to their own physical or mental illness. This may make it more challenging to nurture a positive and safe space.

When looking for online support, it’s recommended that you ask questions before joining a group to find the right fit for you. If you don’t feel comfortable or safe in a group, put your own health first and take action. Online support groups aren’t for everyone, but remember that they aren’t the only option.

Finding my own way

I have my own network of friends online. We give mutual support through physical and mental illness. I also work 1:1 with a trained professional, via online video conferencing, to support my mental health. I wouldn’t have all of this support, without having been in the groups. I also have an amazing network of friends and family, who have shown that they’ll stick by me through thick and thin. I know how lucky I am to have that and I’m the happiest I’ve been in 4 years of chronic illness. I don’t know about the future, but for now; I’m done with online support groups.

References

Pain Doctor-Finding help online

Mayo Clinic guide to support groups 

Mental Health America-Finding online support groups

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. 

No body’s perfect, My body’s imperfect and my brain is in fog; where’s the hope gone?

  

10/7/2015

 I wrote in a closed Facebook group yesterday that POSITIVE LAURA had left the building! 

I started this blog with every intention of sharing how I manage to stay positive on my journey through this chronic pain/illness and have certainly been uplifted by the fantastic response this blog gets and the words of praise I am given for managing to stay so positive. And if I look objectively at how many days I’ve been positive during these past 18 months or so, compared to those where I’ve not; then the smile to frown ratio is definitely heavily biased to the upper smile side! However, I’m sure you know and understand that I can’t and don’t feel like that every single day. In fact, I’d say that you’d probably expect it to be more that way than I do. You see, I’m not very good at feeling negative and bad days can become really bad, really quickly or I gloss over them with sticky sweet syrup so that no one really knows what’s going on behind that mask I use; except maybe my husband! 

13/7/2015 

Well, I started this blog entry to three days ago now but everything just became too overwhelming. I feel out of control. I feel lost. I feel isolated and incomplete. I feel incongruous, superfluous and burdensome.  I feel like I’m grieving for the Laura that was me before January 19th 2014. So, what has been happening in these past few days and why should I share it with you? I’ll be honest, I’m not going to share everything because a) I don’t want to recall and write it all down and b) some of it is just too personal to share other than with a very, very select few. But, I am going to write it down because the purpose of this blog is, and has always been, to try and help just one person; to share for awareness and not for sympathy. So although, this will not be one of my most positive posts; it will, I hope, help at least one person that reads it somewhere during it’s journey across the internet world.  

 

Today I spoke to my counsellor; we’ve nearly finished our set sessions of meetings, but this is such a complexity of issues covering issues, hiding other issues; that it feels like we’ve only just begun. Today I got upset. Today I was grieving for Laura; the Laura that was there before this coil of pressure building in my brain started to try and unravel and get out anyway it can, because it’s way is blocked; before my face and ears started pulsing; before my eye felt like it was about to explode; before my head felt like 2 tonnes of lead weights hanging from my poor shoulders that had no chance in keeping it up right, off the sofa or bed. 
Did you know the Laura before this every morning- migracap wearing, Zimmerframe rolling, squinty eyed, slow as a tortoise weeble wobble; with legs of dead weights mumbling zombie? 

  
Did you know Laura that used to go to gigs and festivals with her husband and friends? Or the Laura that loved teaching dinkies (4-5 year olds) because of their wonder at the simplest of things such as bubbles from a big bubble wand? Did you know Laura that would get a bit lost trying to work out which train she had to catch, especially in London? Or Laura that organised massive themed parties for her children (when they were young enough to want them), because it meant, more than usual, planning and organising? Did you know the Laura that raved about the vegetable cakes she made and then tried to make you guess the hidden vegetable? Did you know Laura the bookworm; cake decorator; silversmith; charity shop rummager; food lover; data collator; school leader; supportive wife; swimmer, Pilates fanatic; hard working teacher; actively engaged school mum?  I think I knew her……

I was reminded of her at the weekend: I was brave and agreed to go to a BBQ that was being hosted by someone that Joel knew, but agreed mainly because Joel’s band were playing. I agreed because I want to support my husband so much and I have hardly listened to his music because the tinniness of it being played through an iPhone, really hurts my head. I also wanted to go out and do a ‘normal’ family activity and I wanted to meet Joel’s new friends and band members properly. (Last time I was in bed…) I managed to stay outside for about half an hour whilst the band set up but it was a small garden and I decided I needed a different plan. I went inside to use the toilet and on the way, met the host. We had a chat and I wished her a happy birthday and then we discussed her use of her stair lift (she has MS) and my stick; I was asked what was wrong, of course. But then she was so kind and understanding and told me to just relax in her recliner chairs and she kept coming to check on me all through the afternoon, as I lay there with my head supported and my head away from the main hustle and bustle and more importantly: behind the speakers. I wore my gig ear plugs of course and  I kept myself topped up with oramorph, diazepam and naproxen and by the end I was as a high as a kite. It felt like I was a true groupie (out of it and in a world of brain fog) and even though I couldn’t stand up on my own (a mix of the drugs and the illness) at the end; it felt like I’d really pushed myself for the right reasons, and we left early but happy and united! 

So you would think that this experience would make me happy. It did, and so did the next day spent with just my husband (the boys had a day out with Grandad) watching TV and going out for cake and milkshakes. It felt like we had a date, and we haven’t had time on our own for ages. BUT, I’d had to spend the Friday in bed beforehand resting and I have spent today ( Monday) in bed resting and, unfortunately, crying: Grieving for the fact that there was a glimmer of Laura. Fed up that the price paid for a bit of fun, is so high and feeling so so tired all day but not being able to nap because every time I tried the phone rang or the doorbell went or the window cleaner turned up! Crying for days lost to the past and feeling out of control of ever getting them back. With no news from the review (my surgeon is as frustrated as I am), I feel like I’m on a loop of never-ending unrelenting pain that’s getting worse again. My body, having got used to that amount of drugs, I’ve had to increase them again; going against the neurologist’s plan. I feel like every time I make what I think is a step of progress in one area, I get worse in another. Basically: my body is failing me, my brain so confused by the build up of pressure (because the blood vessels are stopping the blood flow draining from around my brain) I can’t walk in a straight line, I sleep either too much or not enough, I live in a world of fog and I’m so dizzy I feel like I have constant sea-sickness, I hurt so much I feel like I’m being crushed in a vice and if I step outside of the house the bombardment of my senses sends me in to meltdown. But-I get out there because if I stay in my safe place (bed) all the time I’d sink into a depression I would struggle to pull myself out of. I’ve nearly been at that point today but I’ve been made to think everything through during counselling. Now, I’m still awake at 2:30 am writing this because my brain is on fire after all that crying. The migracap, Oramorph and diazepam are starting to work so I’m going to stop writing now and hope for sleep soon. I will finish this post tomorrow after even more reflection time and maybe just a bit more of a glimmer of hope and positivity. (I did write my 3 positives today still btw). 

  

14/72015

Well, today has been so busy that I haven’t had time to worry, grieve or be upset about what’s going on. That hope that whispered in the early hours of this morning did certainly make me try again on a new day! After such a late night though I was so tired, that I fell asleep on the sofa this afternoon after getting my hair thinned out and straightened (positive no 1) and woke up when the boys got in from school. Then I got very emotional reading the boy’s school reports; I am one very proud mum (positive no 2). And that is what I am reflecting on this evening. Despite everything that has been going on for us this past 18 months, neither of my children have let it affect their school life, and we have also worked hard to ensure it hasn’t! They are both well ahead of where they should be, have both made great effort and progress all year and even more importantly; they are popular, sociable and have an over-riding sense of wanting to help others. What more could I ask for? They are the gold that fill in the cracks in the massive scars of living a life with chronic illness! Although thinking it through, they have always been that gold, even before January 19th 2014! 

  
It is hard work going through all of this and trying to ensure that relationships within the family aren’t cracked and left broken. We’re lucky that we all help each other ‘find the gold to heal the cracks’. I am even luckier to be married to my best friend, who is patient with me (mostly) and have 2 fantastic children; who are all dealing with this tough situation with such resilience (mostly). They keep me afloat and stop me tumbling into the box of smashed plates that never get fixed! I think that we all look out for each other’s emotional well-being too. I think that the unity, love and strong bond of our family unit has been the key to us managing to cope with this. I hope that whatever situation you’re in you have at least some of that same hope for moving forward into the future . You may not have a chronic illness, but there is always something that somebody is battling. I hope that this blog helps you to at least recognise that battle. 
     

15/7/2015

Re-reading this blog post this morning, I have seen how much my feelings have changed over the space of a few days, despite the brain fog. But I know that this isn’t over yet. I will have many more days of grieving; feeling angry or useless; frustrated or lost. But by writing this blog I will hopefully be able to remind myself that the feeling of hopelessness, for me; will only last a few days at a time before I come out of the other side. I’ve got to accept that my body is flawed, but that I am still loved and that nobody is perfect. I must learn to give myself a break in life from trying so hard to be a perfectionist and control freak in everything I do!  I’ve proven to myself time and again that I am a pain warrior and that I have enough strength to pull myself and my family through this onus of pain and hard times, and even give some of my strength away to others in pain; through Mission Migraine. What’s my motto of the year again: ‘I GOT THIS‘! 

  

        

                        

 

             

           

                 

   
            

                                  

                 
   

 

       
   

    

 
      

 

       

   

        

 

    

 

 

  

 

  

 

 

 

     

       

 

 

 

 

 

 

  

 

 

  

  

       Nn

that nobody is perfect; everyone is fighting their own battle: so be kind, always! 

*4 days later and I’m in a much better place, writing those positives again is key and I will be doing it every day. I have been slack. I won’t always post on here though. Keep those happy thoughts as we move toward half term!* 

How to Cultivate A Grateful Life – A Beginners Guide

Click here to Share this Post

How to Cultivate A Grateful Life – A Beginners Guide – ‘I think of 3 positives at the end of each day and I’m thankful for my friends and family. This simple act has helped me grow as a parent during many tough times.’

Tweet

In this step by step guide I’m going to show you how to grow from feeling mostly meh to predominantly pleased by lightening the load using these pointers. I’ll explain how my life as a parent with anxiety and chronic illnesses took me to the lowest lows of my life to being as well balanced and harmonious as a landscaped garden.

When I recognised that I was dragging my family down with me when I’d get grouchy with my boys or snap at my husband because I couldn’t cope, I knew I had to change. I had to find a way to climb out from the undergrowth for them and it was as simple as making 1 or 2 small changes first! This guide covers the 10 steps it took for me to live gratefully.

When the Light Dimmed and I Couldn’t Breathe

I struggled with my mental health on and off for years after Youngest was born. I had post-natal depression and suffered from panic attacks for months after nearly losing him many times in his first 48 hours. The first time we left the hospital for some fresh air, once he’d stabilised, I couldn’t breathe properly as soon as we stepped out of the hospital door.

After being checked out by doctors, I was told it was a panic attack. It happened again, each time I left him in the NICU and continued once we were home, especially as he was rushed back into hospital for a 5 day stay a few weeks later. I’d panic if he didn’t snuffle when sleeping and even had a GP tell me that he didn’t know what I wanted him to say.

I just needed to be told he was okay, which he was that day but not every day. All this went on in the same 12 months that I lost my Grandpa and Father In Law as well as four other family members and friends that died too young. Joel and I had to find our way through all of this heartbreak, which was a massive strain, and I needed my voice to be heard!

Finding the Air and The Space I Needed to Grow

I was in very a bad way when my GP listened and I was counselling sessions which had a positive impact. My counsellor guided me towards the air holes when everything was suffocating me. Joel held on tight to my hand and I had a 2 year old to think about as well as a baby so I fought hard and together we found the light we needed in our lives again.

Making these big changes led the way but it was little changes that were key to me being purposefully grateful for my family, my remarkable husband who gave me space when I needed it even whilst he was dealing with his own grief. I had 2 beautiful and healthy children (Youngest was given the all clear aged 1) )to be thankful for.

As a family we grew stronger roots and the trail that the our tears left behind faded.

I needed time to nurture our boys and bed in strategies to keep me on a positive path. Just look at these faces to see all I had to be thankful for.

We got plenty of fresh air on family walks and I exercised outdoors when possible. I had breathing space to appreciate the world around me and to recognise all the positives I had in my life to celebrate!

Cherishing Life Every Day and Seeking Adventures

When I was diagnosed with migraines a couple of years later, it threatened to uproot all of the hard work we’d put in to creating space in which to appreciate our family and the life we’d built. But we’d done the tough bit and with Joel by my side I managed to stand tall, despite the wobble. In many ways it was the catalyst to my valuing every day with them.

So when my physical health stabilised we grasped every opportunity. We embraced travel with unbelievable family holidays and wonderful long weekends just the two of us. We embraced live music and made the most of living close to London and Brighton; immersing ourselves in the culture and experiences available to us.

When I took a promotion with full time hours when Youngest started school the challenges came and the cracks in the ground around me started to appear again with the stress. I had panic attacks driving to work or would arrive in tears. It wasn’t the right place for me.

So I went back to part time hours and rediscovered my love for teaching and as part of a small school nurture every child.

I was happy to wake up and drive along the country lanes and have time to exercise and be with my family at weekends. But I needed the buzz of a challenge and landed a Senior Leadership role in a lovely school. Unfortunately I fell ill after one term and this project was abandoned mid sentence!

The Abandoned Vine and The Weeping Willow

It had been an on off relationship with cultivating a grateful life as my mental health wasn’t being nurtured continually. I was on uneven terrain so I became a weeping willow, a common symbol of grief. Isolated and feeling like the only one with a constant migraine, I hardly saw any friends because I found it hard to have a simple conversation.

I was stuck at home, unable to carry out plans we’d made to see gigs and I felt suffocated. When we were together as a family, I’d be shushing the kids over nothing because of my hyperacusis and getting grouchy, I couldn’t sit with Joel on my right because his deep voice triggered tinnitus. So family life became strained, left as though an abandoned vine.

I found other chronic migraineurs online but this compounded my feeling of hopelessness. However the light shone through my protective foliage when I found a group of amazing people who gave me support, inspiration and laughter. They helped me gather strength and find the positives again! Maybe I wouldn’t be left to go to rack and ruin after all!

It turned out that I was actually suffering from IIH or Idiopathic Intracranial Hypertension. You can read more about this condition in this blog I wrote a while back: https://laughingwhileyourecrying.wordpress.com/what-is-idiopathic-intracranial-hypertensioniih-iih-brainandspine/p

The Beginners Guide to Results From Being Grateful

1. Find someone to give practical advice to help you solve the root problem.
2. Connect with someone to confide in when times are tough.
3. Get help with complex applications for monetary support.
4. Seek counselling through very tough times.
5. Find your tribe, the people who get what your going through.
6. Pass on acts of kindness to others going through similar situations.
7. Share your story with those you could help those beyond your group.
8. Change at least one habit to help you live a healthier lifestyle.
9. Find at least one positive or small win from your day.
10. Record your positives from each day In a way that you can refer back to.

1. I was given a crash course in how to deal with chronic illness life, which at the time was still diagnosed as migraine. My migraine friends would chat to me on the phone when I had particularly bad days or worsening news. There were there to offer me practical advice, including introducing me to my trusty Migracap and meditation.
2. I made many online friends but have been lucky to meet some of these truly amazing people who I could confide in, as well as having Joel of course. One truly amazing lady told me that she would be there in spirit to squeeze my right hand and she would squeeze back. This simple invitation became my safety harness!
3. I learnt about options for having to leave my teaching career and how to plan for the future. I was supported when I had to fill out forms for ESA and PIP support and how to deal with the face to face meetings with them, social workers and more besides.
4. Little did I know then where chronic illness life would take me. Having friends that get it to confide in meant that there was always someone there if I had bad news. If Joel was at work I might have to wait all day but his support is what got me through, I recognised early that I needed counselling again to help me cope with extremes.
5. These people became my tribe and having them there got me through the really scary times when I couldn’t communicate at all. By this point I’d narrowed down my friendships where people disappeared when it got too much. But once I was diagnosed with IIH and had a treatment plan of how to help me, I had hope again.
6. As my confidence improved I developed a more positive outlook because I could pass on these acts of kindness to friends I’d met online with similar symptoms to me. Meeting members of my community has allowed me to understand chronic illness better and I can offer advice based on other’s challenges from different perspectives.
7. I started my blog to be able to support my readers during their own tough times. I share information for awareness of my Conditions and mental wellbeing. I share what’s helped me as a parent with chronic illness, finding a purpose and having a healthy lifestyle and have created a community where people can ask my advice.
8. By being so open I’ve really found out who my true friends are so I’ve worked hard on developing my self esteem. I try not to let those who can’t cope with my no filter speak and inability to communicate well all the time, impact on my own wellbeing. Luckily I’m overwhelmed by the support and understanding my friends give me.
9. I was inspired early on, when I first wrote this post in 2014, to think of one positive at the end of every day, however small. It could be that I managed to wash my hair or that I saw my nephews and nieces. It might be that Youngest and I baked a cake or that Eldest tidied his room – it’s rare. It might be that Joel and I watched a great film!
10. Now I write 3 positives every morning in my journal about the day before as I’m too tired to write at night. I write 1 thing that made me happy, 1 thing that made me proud and 1 thing that I’m thankful for. If I’m going to always be in pain, I’d rather be happy in pain than miserable and in pain anyway.

Hey, you might like to check out my top tips for setting up your day to be positive using affirmations. These easy tips can help you to build on to these tips above. https://laughingwhileyourecrying.wordpress.com/2019/02/03/5-morning-affirmations-to-guarantee-a-successful-day

Conclusion

I give myself limited jobs to do each day, the amount depends on whether I have a friend visit, so that I can still take time to take that one positive thought and remind myself throughout the day.

My life is no longer about a teaching career but it is about the little things in life. Having a positive thought to focus on helps me to stay thankful for having supportive friends and most importantly every moment with my family.

Almost every day a friend will mention that they just don’t know how I’m able to stay positive despite being in constant, debilitating pain. I’ve been told by many friends that I am the strongest person they know or even that I am an inspiration to them. No, I’m not singing my own praises here; I just wanted to share how this makes me feel.

After years of living with mental and chronic illnesses, I’m honoured to be able to inspire my friends with my positivity. I feel that I’ve been passed along insider knowledge for helping others that are suffering with pain or illness; sharing closely guarded tips, tricks and wonderful acts of kindness. My strength has been sent my way and I share it freely.

If I can raise a smile for someone or give them extra strength to get through their day, then I’ve achieved what I set out to do when I started this blog. However, these days I can see what led to me thinking of one positive thought a day and now extend to recording 3 positive thoughts for every day.

If you can only do one of the 10 tips in this guide to a more grateful life, then please find your person to confide in. We all know someone who has needed someone to check on them at some point so if you can be a confidante then make sure your friends know they can talk to you about anything, at anytime. A grateful life starts with a small win and a grin!

Have you got any tips for creating a positively grateful lifestyle that I’ve not mentioned? Please pop them in the comments below. I’d love to read them and I do reply.

PLEASE PIN ME 📌
(Link below or up there ↗️)

*If you feel you need professional help then please speak to your doctor. This information should not to replace medical guidance and is based on experience alone.

Do you want to get all the best content and get access to my VIP library? Grab a copy of this free positive printable today when you sign up to my occasionally regular newsletter now!

CLICK HERE TO SIGN UP FOR YOUR FREEBIES

✋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!