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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

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5 Secrets for a Strong Relationship with Teenage Carers

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5 Secrets for a Strong Relationship with Teenage Carers

Young Carers

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

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

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

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

My family

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

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

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

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

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

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The McKee’s mucking about Christmas 2018

Parenting Styles

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

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

 

What Does Caring Involve For Me

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

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

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

The Impact Caring Can Have

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

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

Carers Trust – Young Carers

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

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

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

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

Being My Carer Every Day

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

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

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

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

Building a Team

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

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

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

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

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

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

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

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

To adapt these for younger children

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

A last word and some links!

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

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

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

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

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

Resources 

Carers Trust -Support for Young Carers

Young Minds – Looking After Yourself aa a Young Carer

NHS – Young Carers Rights

Carer Gateway – Advice for Parents & Teachers of Young Carers

Carers UK – Hidden Depression

Chronic Illness Bloggers

Sign up for New & Exclusives – Help for Young Carers

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

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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

Chronic Illness Bloggers

School holidays

So in my last post I know I promised that I would be writing more regularly, but these school holidays, blog writing plus my birthday and lots of jewellery orders haven’t been a good mix of having time to write! I’ve also been sleeping. ALOT. 

So let me explain. 

  • School holidays-the boys are back from Grandma’s and we’ve been spending every minute that I’m not asleep (see later on) spending time trying to be as normal as possible together, facilitated by Nina. I think it’s working out amazingly! We managed to get some funding for her for some extra hours during the holidays, we had been banking some hours since she started and because I had been given a good amount of backdated pay before she started; it worked out that she could stay with us from 11-4 on the days when it’s just me and the boys plus a few extra hours here and there as needed, such as dropping in to help get me up when the boys were all away in Wales! So, last week we went shopping, made a cake, went to a friend’s house for a cute birthday tea and Nina even did an ironing marathon whilst, staying here to be the safety net, the boys went on their own to the park. We juggled the hours about a bit: she stayed longer when we went to my friends house but left earlier when the boys went to the park. It worked brilliantly as our first week of this set up and I can’t wait for the next few weeks, although there is some holiday in there too-yes, we’ve actually booked to go away! Hooray! The point of the extra hours was not for her to babysit the boys but for her to assist me to be the best parent I can be, whist being ill. So no, I still can’t go out every day, but, she is here to make us lunch every day which, takes a pressure off of me, and on better days she can get me out of the house for an hour or two. Next week, we’re hoping to meet up with some of the boys friends at the beach or the country park and on quieter days maybe even watch a movie! However, the boys are being so so good at keeping quiet til 11, when she gets here to let me sleep, that TV and PC are the only entertainment happening at that time…I can’t believe the difference it has made to not rely on friends to help out, or loads of summer camps like last year. Zeke specifically said that he was too old for them all except the cycling and forest schools ones now. They go to cycling on Thursday morning this week coming, and I’ll book forest school for autumn when it is minecraft themed! It has just meant that it feels like I’m not dumping them on others all the time, for a change, (even though I know my friends are quite happy to have them) and having Nina around is great! I’m sorry that there was so much ironing on Friday though, Nina! 😉
  • My birthday on Thursday was a fantastic day! I opened my presents on first wake up and was blown away by people’s generosity; I got heaps of vintage buttons (so many I’ve HAD to buy new trays); an assortment of special, beautiful gift wrap goodies, that has set me off with a new idea to add a handmade gift wrapping service to my jewellery business; gluten free bits; a lovely scarf and an AMAZING set of photography equipment! including a lightbox for all my jewellery photography! I then had a luxurious, and much needed, 2+ hour nap, which enabled me to have the energy to get dressed with a little help (for 3 dress changes) and to re-touch my hair; Nina had straightened it the previous day!  

We then went to my favourite restaurant;  Terre a Terre, and had tapas for Joel and I to share so we got a bit of everything on the menu-it really is the most amazing food but I can’t readpllu remember what’s in any of it…….and we had a really fun time. I embarrassed Luca by being really loving and cuddling him lots, the boys made wiki sticks figures (below is a slightly photo shopped version of me-however, quite accurate, don’t you think?) and then the lovely staff brought out a birthday truffle with a candle and ‘Happy Birthday’ written in chocolate for me! Unfortunately Joel had gone to get the car as he could see I was starting to flag at the 3 hour mark, but luckily the boys got back from the toilet just in time so that I didn’t look too sad! Xxx

  
After all of that I was exhausted but my adrenalin managed to keep me going long enough to thank everyone for  my overwhelming amount of birthday greetings online and to enjoy my birthday cake (made by ourselves with Nina earlier in the week) decorated freely and awesomely by the boys, before dragging myself up to bed: a lovely day. A day made even more lovelier by a call for Addenbrookes to give me an appointment in the wizards (mr Axon’s) first clinic on Friday 21st August! Hooray! I think this could be the best present I got ALL day. it does mean a day trip to Cambridge from our week’s holiday near Canterbury but that’s ok! I’ve booked out a few days of rest when we return! 

  • My jewellery business has also been keeping me very busy with lots of exciting custom orders. These are orders that are similar to what people have seen and just take a bit of my time (that is paid for) to design a piece of jewellery together and then send it off on it’s way. One order was actually more bespoke, and very different to my usual style. It was beautifully elegant, with just one rose quartz bead and an angel wing. It was so delicate and pretty and got so many likes, it made me realise that I need to make a few more pieces like this to go alongside my statement jewellery. I love my statement jewellery but it is very specific and only for a certain type of event, or woman, for that matter! So, once I’ve finished my last custom order today or tomorrow; then some more dainty things will be winging their way out of the paprika studio! I continue to plug my wares on line and it takes up so much time. I need to make myself known and get an internet presence as I’m not well enough to sell at craft fairs. (I can’t wait) it’s hard work and time consuming, but fun too; some of it is like playing internet games! Below is the gorgeous piece that has me thinking more delicately! https://www.facebook.com/pages/Paprika-Jewellery/159061255117865   
  • And then there’s the sleeping. If left to my own devices I’m sleeping for a couple of hours every morning and sometimes napping in the afternoon too! I only started the extra topirimate at night on Thursday so I don’t know if it’s that or not but I am so so tired, maybe it’s just because I’m doing too much? I woke with the cat coming in the bedroom this morning; hence this post-(6-7am) and I expect I’ll sleep for a couple of hours later. I can’t complain as I never used to be able to sleep in the day! Now it doesn’t seem a problem, I even sleep in strange places, including falling asleep on the toilet during the night!!!! Joel has had to wake me because he’s been worried I’ve been gone so long! These drugs do the strangest things; I’m making up new words and putting words into new orders in a sentence (aphasia)-seperate blog post to come; I fall asleep on the loo; I sometimes even fall asleep whilst someone is talking to me or whilst I’m talking to them;  I have to drink loads of prune juice to battle the effects of oramorph and amitriptyline drying out the gut…. (Constipation-yuk) not talking about here as I don’t have an issue with it (but only because of the wonders of prune juice); swelling/oedema in my ankles and many, many others. I’ve thought often about just chucking all prescription meds away and just coping on oramorph but I don’t think I’d last even a day! I’ve tried reducing each one and they all seem to make me worse if I do, so I must continue the regime of toxic drugs helping my system and hope that the day comes soon that surgery (come on WIZARD!!!) will get me in a space where I don’t need as many preventatives, 

So, no promises I can’t keep this week, just a note to say I will write when I can. The Rollercoaster of emotions still continue but I thought I’d keep it more factual this week. Ŵe can’t have tears every week, can we? And just say that here’s hoping that pain I’ve felt over the last day or so, whilst recovering from my birthday fun, heads off soon; so that I can get back on with life. I tried to carry on as normal on Friday and ended up in a state stuck on the grass in the garden and then in tears on the stairs again! Will I ever learn my limits and should I ever stop trying to push them?……I guess I should know the signs by now but no, it just proves how quickly I can still change from being semi ok to really not in the space of minutes. How can I be walking fine one minute and the next not be able to navigate corners without my knees buckling? But hey-I’m not going to go all emosh today. I’ve been in bed a day or so and my parents are visiting today so I’m hoping to get up but they may just have to come and see me up here! Damn those stairs!  They may stop me putting one foot in front of the other sometimes but they will never stop me carry on with this journey where I’m making mistakes but still learning to love and live and listen and grow and adapt and most of all love! 

Thank you again for taking the time to read my ramblings. Xx

  

  

Mental illness-the light at the end of the tunnel??

With every story of chronic illness comes a side order of mental illness. Some people, of course handle their situation better than others, managing to hold down a job and healthy relationships etc. For some however, the struggle to find that ’light at the end of the tunnel’ that everyone keeps talking to them about, from the minute they’re signed off with a medical certificate for more than three weeks, becomes a constant battle with lining up the pills in pretty patterns next to the vodka bottles. Of course there are many of us that are in between the two ends of the spectrum.

The past week has ‘Stop the Stigma’ week; a week aimed at raising awareness of mental health issues set up by a small group in the US and it has spread via social media. I’ve decided that now is the time for me to write this blog although it has been fluttering in the cobwebs of my mind for a while. https://www.facebook.com/pages/Mental-Health-Awareness-Week-2015/1392190864384089

This will not be an easy blog entry to write and therefore I want to warn you now that it may not be easy to read. If you are a stranger, then I hope it makes you stop and think about someone that you do know with a chronic illness and maybe make you reassess how you may respond to them or interact with them. If you’re a friend or family member then I’m sorry if anything I write in this blog is upsetting; however, the point of this is that by sharing my story, my vulnerablity, that more awareness of mental health issues are raised. It will take courage to write about some of the content of this post, however because I know my children can google this blog anytime they want, I will have to use some self censorship. I am terrified of what starting this blog is going to bring up and how I’m going to handle it but for now I’m going to sleep on the ideas that are starting to formulate……

Firstly, let me say that I am not an expert in mental health issues, nor have I suffered particularly badly with them myself. I had a brief spell of post natal depression where I suffered with panic attacks; these were diagnosed by the midwifes,  as the attacks started whenever I left my second son in SCBU and went away from the hospital, even for the briefest time. The diagnosis was a relief, because they thought it might have been a pulmonary embolism due to complications after delivery. However, after we all got home the symptoms continued and worsened to the point of my GP immediately referring me for counselling. I developed a good relationship with my counsellor and her technique worked and I was soon cycling to the appointments and rebuilding myself. I was given the standard NHS 6 sessions but that was enough for me to get my life back on track so that I could look after my children and be a happy wife and mother again.

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That was my first personal experience of mental illness but I grew up around it even though it was something that wasn’t really discussed. Well, I remember being told about things that had happened, those things still haunt me now, but not understanding them. I won’t go into these events as I don’t have those people’s or their families consent. I can however tell you that I remember some incidents making me feel like I should be able to do something to make it better or ‘fix it’ or that it was somehow my fault. As I’m sure you can imagine I am now a ‘fixer’ and have a very high tendency towards feeling guilty. Interestingly, a counsellor I saw at the beginning of this 16 month long nightmare of a migraine/headache/iih thingy, told me that guilt is “being angry at yourself because you can’t be angry at anything or anyone else.” I still feel guilty. I probably even feel a bit guilty that I never went back to see that counsellor. The thing is it left me in bed for 3 days afterwards in agony from the journey (25mins) and the talking (1hr), so I deemed it a pointless exercise in the journey to my recovery.

So you can see that I have already experienced counselling and have found it a useful tool. I think that everybody with any mental illness should reach out for help because there is a lot of help out there. I am very lucky, in that my GP practice, has a counselling service that runs from it’s practice and that because I am a teacher I also can access counselling through my work occupational health support agency.

However, since my first encounter with the counsellor I decided that I can do this without any extra help! My support group friends cannot believe that I am not on anti-depressants! You see, most people that experience chronic illness, also suffer from mental ilnesss. In fact, it is a common belief that migraine is actually caused by stress. There is actually not enough evidence to know the cause of migraine, as despite it being in the top 4 of the world’s most disabling conditions, it has very little money spent on it to research causes and cures. Stress can be a trigger, just as a post stress comedown can be (this is one of mine) as well as chocolate, caffeine, tomatoes etc… In fact, anything can be a trigger. It is an individual thing.

There is also very little research done on IIH but for a different reason, this time, because it is so rare! However, on forums and the support groups, it is clear that most people find that stress raises their pressure and therefore increases their pain and other symptoms. In fact, crying and laughing often come up in forums on migraine and IIH sites as discussions about how these acts can increase the pain. I have looked on the internet for research with regards to stress and IIH and cannot find any. I understand it to be the physical impact of raised blood pressure, increasing stress on the vessels to the brain could worsen symptoms of IIH.

So you can see that there is a link between worsened symptoms due to increased stress but what about stress causing these conditions. Well as I said, it is unknown what causes migraine and it is the same with IIH. IIH stands for Idiopathic Intracranial Hypertension and Idiopathic means ‘of unknown cause’. However, many people both professional and otherwise still believe that stress causes migraine and IIH. When I was first unwell with migraine, the first neurologist I saw suggested that working 4 days was too much for me. However, a couple of years beforehand I had managed to work full time with low level migraines and in a school where I was very unhappy and cried most days on the journey in to school. (I probably should have been signed off with stress but still….) I soon left the school and went to a school where I was really happy and that’s when the migraines started to get worse…. There’s no telling is there. Anyway I soon had to encounter an Occupational health assessment. I spoke to the occupational health nurse over the phone; her exact words were “you couldn’t possibly be off work for 3 months with just a headache”! At this point, I’d been diagnosed with migraine and that had been written on all but my first sickness certificates (the first said headache). She really tried very hard to diagnose me with depression in that phone call, telling me that my voice sounded monotonous and that I didn’t sound ‘like a teacher’?? If I had been depressed, I would have just admitted it, it’s not something to hide and that’s what I told her but she took a lot of convincing that I really did have unbearable headaches that meant I couldn’t walk for more than 5 minutes and that was the reason for me not sounding full of the joys of spring! My neurology nurse told me that I should “talk to my GP about my mood” when I burst into tears of frustration when yet again I was told that I needed to give the pills a bit longer to work (surely 6 months is long enough to know that something is not having a positive impact?)  I have even experienced this attitude with the headache specialist, whom I begged for months to see, she suggested that even though I wasn’t working there was still a lot of stress at home; my children and all the housework. I couldn’t believe it. I had fought so hard to see this woman and her advice was to not get stressed out by doing housework (which Joel was doing at the time as well as working anyway); my kids (who make me want to get up and fight every day, who tell their friends they have to be quiet when they come to our house and are always complimented for being the most well behaved kids our friends have looked after)! She also told me not to eat chocolate, cheese or caffeine. Do people seriously get all the way to seeing her and not have tried that one already???
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On the support groups I’m on there is often talk of depression and cries for help. It can be quite scary when someone writes that they are going to end it because they can’t take the pain anymore. The thing is we all get it. We all know what it feels like to want to get rid of that pain so badly we’d do anything. Of course, most of us would never do it, but that black dog of depression looms over us and invites us to take the easy way out. However, luckily those support groups on the whole are thereto help is get up and fight each day. The groups that have people constantly posting photos of their operation wounds and groups with passive aggressive members in are now not on my follow list. I simply cannot be dealing with groups that are constantly negative. I need to be in groups that support each other through bad times, but will them through the good times and applaud every victory each member has! A group where a member wants to post that they have had a pain free day is what I call an awesome group! We should be there to will each other on to health but also recognise that everyone may not be able to get back to health and be there to support them just as much.
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Now, this is where I need to point out that I have never thought through an end plan ever! My husband and children are too amazing for me to be drawn in by those thoughts for long enough to actually plan anything. But, I have wanted to just get that pain out of my head somehow. When the pain you face almost daily, comes close to the same pain you suffered in childbirth then yes, you want an end! In childbirth, you get gas and air and an amazing baby and a heap of endorphins; I just get never-ending, vicious, ice-picking, tunnel-bearing, vice-busting pain!

So, how do I make sure I’m not constantly brought down by the car-crusher I like to think of as my evil nemesis! It’s there with me constantly, so I have to go into battle mode, no sleeping on my laurels. And it’s not just me. My family are affected too, aren’t they? We have to raise an army together. Luckily, we’ve always been a good team. Luca is the ‘defender’: He checks on me, he stands at the top of the stairs and coaches me up every teeth grinding inch of pain that is called the nightly mountain climb. He has embraced our family positivity jar and can always think of something to say and write when we share our positives at the end of the day; we don’t always write them down but when I dip in the jar I often pull out one of his that says ‘giving mummy cuddles’. Zeke is the ‘logistician’ always ready to suggest an easier way of doing things. “Why doesn’t mummy go upstairs now, when she’s less tired?”. He likes to know the facts of what is going on; he took in everything on the detailed skull picture we showed him when we tried to explain my warped mind and he often asks when the operation will be and what will happen. He likes to know the facts and finds it hard that we can’t answer all his questions. They have both got music to keep inspiring them, swimming to keep them fit and have been registered as young carers, so will be able to attend meetings and days out in the holidays with children in similar situations.
Joel is the ‘commander’; bold and fearless. He has taken on running a household, being my carer, being a fabulous dad and still holding down a high powered job with almost sheer ease. There have been a few bumps and, if it hadn’t been for Nina coming in as ‘adventurer’ ready to put her hand to new things and throw herself fully into the McKee family, we may have had a crumpled leader but he still holds his position well and keeps his sanity through his music. He has joined a band that gives him his own creative time and space. Now all we need is to get him back out on that bike! I am a bit of a ‘mediator’; often taking that role within the family and coming in to do my parenting bit when I can, often when Joel is at the end of his tether and when I should have started helping earlier. I have found new things to interest me and causes to fight by joining Mission Migraine and sharing my story for awareness. That has led me to realise the power of the internet and I share my journey about suffering with migraine and being diagnosed with IIH through this blog and more recently by starting the twitter account for Mission Migraine @migrainemission. Creatively, I have started to build myself back up again by beginning to make jewellery again. Exercise wise, I still love my yoga and Pilates and meditate daily and try and do simple exercises in my chair or bed when I can. Personality types taken from 16personalities.com

As you can see, we do a lot of positive things to try and keep healthy minds individually and as a family but we are all aware of the need for someone else to talk to outside of our situation if the need arises and I may talk about that in future blogs. We have done all these things as a natural process but I was interested to find this poster when searching for pictures for this blog on how to have a healthy mind.

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Yes, we are living in survival mode but we are gradually rebuilding who we were before this illness came to join the McKee household. I want to say that my illness does not define me and I hope if you have a chronic illness that you can say that. Unfortunately, they do become all consuming when they take over every aspect of your life and relationships. I am gradually beginning to rebuild the Laura that was here before this illness came in and shook me to the very core, however, this Laura will never go back to who she was before. I think that that is a good thing. I have learnt so much about life, relationships and people through joining support groups, developing friendships, exploring empathy, deepening understanding of who I really am and who I want to be (I’ve had a lot of time to think), and developing love on a far deeper level than ever before with my husband who has guided me through the hardest moments of my life so far. All I can think is that this stands us in good stead for what is to happen in the coming months and that we have all these support networks in place already for when we need them the most.

Thank you for taking the time to read this post.

Wobbling my way in to the world of being an employer

I’m starting this blog very early on Saturday morning, as in so early I haven’t gone to sleep yet, after a very busy week of getting set up to start employing my very own PA! Yes, you heard that right, I’m getting a personal assistant! My social worker decided after meeting me for just a few short minutes that me and my family were in desperate need of some help. Now, before I go any further I want to clarify that I have a social worker as part of the proactive care team, based at my surgery, that also includes an OT, physio and pharmacist! I was referred due to the severity of my illness and that I can barely do anything for myself, let alone for my family; I never thought I’d be in a position where I would need a social worker but I think I had an ill-conceived idea of what the job can entail, probably because of the cases I’ve dealt with as a teacher in a deprived area!
Secondly I want to thank my friends and family who have done and are still doing SO much to help us out practically. We could not have survived the past year without you, particularly the last 5 months! And really, words are not enough. There are school friend’s parents, who are having the boys back for tea or dropping them home for me after school; friends that have brought us meals and friends that have come to iron or clean or take away things that need mending. Even all my friends that pop in for a cuppa and do one job before they leave, such as load the dishwasher or take a pile of stuff upstairs or downstairs for me. I also have to give a special mention to my friend Donna and my Dad (although, I doubt he’ll read this, as he doesn’t seem to find the time to read a text😜😜) who came to stay with me for two nights each when Joel was away. Also my awesome friend Sara who came to make sure I got myself up to bed ok when Joel and the boys were all at the O2 for the evening; she even read me a bedtime story-surreal, comforting, funny and slightly odd all at once-but such a lovely thing to do!

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So, unsurprisingly, as if you’ve already read my blogs, you’ll know I have a tendency to do; I’ve digressed!
The point of this post is to tell you about my new PA. It’s taken weeks for the correct support plan to get put in place; go to the funding panel for approval; have a welfare benefits check and a brokers meeting to all take place. Then this last week has been crazy busy, with meetings and emails to help and support me get this thing started. Luckily I have found my own PA and haven’t had to use an agency. My PA is a very close friend’s daughter and it just all seems meant to be for both of us. I just mentioned it to my friend one day, who said her daughter who has carer experience, was looking for a post and hey presto! I then have been given the choice to use an agency, whom I pay to do all the payroll information and they give me support in setting up as an employer safely e,g getting employers liability insurance, providing templates of all working documents and my advisor has even typed up my PA’s job description for me. It has still felt like a full time job though, it’s definitely hard work to go through a stack of information when your short term memory is shot! I have to ask for repeats of information and I write everything down, which makes everything take longer. Thank goodness everyone has been patient and supportive with me.
So much to listen to, write down and try and retain and organise!

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And so to today, the day of the induction, just 3 days after meeting with my independent lives advisor and a day after receiving a copy of my support plan and getting my employers liability insurance in place. I had literally just finished getting myself dressed when N arrived; so she came to find me upstairs. We went through the risk assessment, which took forever, and then I showed and explained to her the care I need to help me get up in the mornings and where everything is. The smile on N’s faced when we wrote N/A next to use of a Commode or catheter! I’m pretty relieved about that one too. (Pun intended)

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We finally made it downstairs to fill in even more forms! Then the dreaded moment came when I had to use the computer to take copies of identification; so not only did I have to use the computer which I really struggle to sit at, but also the scanner!!!!

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Well, I nearly made it, but had to leave the PC on until Joel was home to help me out as I just couldn’t take anymore. I gave N loads of paperwork, we filled in her first time sheet and then as soon as she left; I collapsed on the sofa!

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I’ve since spent the evening getting Joel to check I’ve done the right forms and completed them correctly; sorting out what we need to buy to ensure we have everything, such as a fire blanket, stationary and a first aid kit. I then couldn’t help myself and set up a notebook for everyday notes to each other. and then I realised why I wasn’t tired at 10pm; I was 2 hours late with all my meds. And now I still can’t get to sleep at 1:30 am and am hoping that writing this down will help get it out of running around in my head!
Tomorrow we embark on a tidy up of our bedroom and Mr McKee has even vaguely agreed that he might put his clothes in some kind of order!!!! We have to make room for our new bed linen because N’s mummy (aka super friend/stroke second mum) has told us off for being silly and adding more stress to our lives by only having one set. I think we have one spare kids set…..And sleeping bags. Hahaha. Ooooo- I do love a good tidy up. I’ve already sorted the medicine/first aid cupboard so that it’s easier for N to use. And then we also get to go shopping for a few things; so I really need to get some sleep!!
I can’t wait until Monday when N starts properly, just that extra bit of help to get everything I need for getting dressed and doing a few jobs before we finish the induction, when I show her how a kettle works etc…
Well to end this post, I am so thrilled to have N working for us for nine and half hours a week; mostly with me in the morning and managing to do some jobs and then popping back in the evening to help Mr McKee get a bit of his life back; tidying up after tea and any other odd jobs because truth be told: He has been superman for the last 5 months!

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He has been working a stressful job: then coming home to all the housework and cooking and sorting tea out, on top of worrying about me, I had my suspicions before I got ill, but he really has been amazing and I feel so lucky to have this man; husband; best friend and father of my children, in my life! We haven’t fallen apart but I think if N wasn’t coming to the rescue, we may well have started to sink…..
Bring it on! I’m ready to wobble my way into being an employer of my very own PA!