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

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

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

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Follow me @Strength Of Tears on Instagram

Or @Strength Of Tears on Facebook

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Chronic Illness Bloggers

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

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

Staying level headed with debilitating pain. 

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

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

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

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

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

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

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

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

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

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

Paprika Jewellery & Accessories

Paprika on Facebook

Paprika on Instagram

Paprika on Pinterestl

Paprika on Twitter

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

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

Chronic Illness Bloggers

Day 22 #MHAMBC #MHAM  How friendship gets me through! 

Today’s blogging challenge is one I could write pages and pages about but instead I’m writing this short(ish) little piece about my true friends: The ones that have stayed by my side despite all the cancelled plans, missed social events, forgotten birthdays and the confusing conversations where I repeat or lose track consistently. I’m not naming names, so you can also having fun guessing if a) you’re included (think about that for a moment…. And  b) which qualities might be you! (#cheese warning) But if you think you’ve been included then know that just knowing that you’re my friend gives me hope everyday! 

  

Little Miss Wise: I can rely on this lovely lady to offer me her help in any number of ways; a trip to get the kids from school or to take them to a club. She’s always picking things up for me from the shop for my smoothies and drops in to help out with whatever she can. When she is here; she listens to all my woes and offers me advice in how to deal with all sorts of problems and often tricky situations or people. She cleans and organises my house so well we often can’t find things afterwards and she makes us keep on top of the mess of living in a house of boys (-me) which wouldn’t happen if she didn’t come regularly. Her hugs are extra special and her warm energy is always welcome, as is her cup of tea making skills!  

Little Miss Scatterbrain: Often offering to collect the children for me, this lady occasionally needs a reminder text sent from a girl who has to set herself a reminder to send the reminder text! She has a heart of gold and offers the best support a friend could wish for. She makes me laugh and knows how to cheer me up and is always on the other end of the phone for a quick text or chat. She understands that I can’t sit and chat for ages so never out stays her welcome and is one of the few that can read my face colour. She is one of the keepers of the code to the house (although often forgets it) and it now seems funny when she rings the doorbell, making her feel more like a family member than a friend. She has even stayed over when Joel has been away to make sure that I’m ok. This is a true diamond of a friend that will always stay close to my heart. 

Little Miss Helpful: This special lady always has her eye out for what can be done to help. With children the same age, she understands what they are going through and in the early days that I had to stop driving; she offered to have them back at hers on the same day every week night so that we didn’t have to worry about who was picking them up. She tells me about things she has noticed about the children’s behaviour or things that they’ve said if she thinks it may be useful. She passes magazines my way and always brings lovely flowers or stops at the shop for supplies before a visit. She is always aware of when it’s time to go and never stays so long that I’ll start feeling properly unwell. She always spots me if I do happen to be up at the school, even if I’m in stealth mode, but I don’t mind her cuddles one bit! 

Little Miss Trouble: This awesome friend has found a special place in my heart after seeing me through some very, very tough times. She’s on speed dial for emergency brain fails and always has my back and knows how to listen and pull me through and then say the silliest thing to get me giggling again! She gets me out of the house and copes with having a drugged (prescription) up; wheelchair bound; naughty ‘kid’, who will often start scooting herself around a shop, very well. We have discovered a mutual love of causing chaos and our husbands have both quickly picked up on what happens when we go out on our ‘adventures’ and now even say that there will be trouble! I couldn’t do this brainache thingy without her in my life and she is number 2 to my husband in spotting signs of imminent health decline; in fact being the inventor of the dulux colour chart for illnesses. I just don’t know if she has realised what she’s signed up for yet? 

Little Miss Chatterbox: Whenever disaster strikes I know exactly who to text/phone. This friend will have me chattering forever about the topic that I was upset about but also everything else that’s going on too, if we’re not careful. She is the perfect person to analyse a situation with and has been a tower of strength for me since the day that this here headache started, back in January 2014! She knows the right things to say and has me laughing about silly things despite it all and often makes me forget the pain is there, even if it’s only for a short while. She helps out with the boys and often comes and takes them out for a bit during school holidays or even just comes and entertains them whilst it go to lie down. A true gem of a friend and this one is even real family so there’s no getting out of this friendship too quickly my friend! 😘

Little Miss Busy: Despite being one of the most crazily busy and slightly nutty people I know, this friend has been there for me and my family in the depths of crisis and we will never forget it. She jumped in to help, the minute she heard that hospitals were being involved; taking the kids off of our hands so that we didn’t have to worry about them from that point on. She drops by when she can and tries to keep in touch but it’s hard when life is so fast paced and I understand completely. I don’t mind because I know that if I needed her tomorrow; she would drop everything and be there. When she does come, she brings all sorts of goodies- from trashy mags (boy, do I mean trashy), flowers and delicious meals for the family. This is a true friend for life and a good job too, cos I’m a great stalker…..😜😜

Little Miss Sunshine: This lovely lady whizzes in and out as one of her busy ‘things to do’ but she always knows what’s going on…. She has the heart of an angel and will always bring things with her, despite my protests! Flowers, meals or cakes she knows how to make sure that I’m ok. When Joel has to work away, she will pop in more often and keep an eye on me and she always fills the house with laughter and smiles. She knows how to fill me in on all the latest gossip and make sure that I know how to do ‘that trick with the…….’ Whatever it is we’re talking about. I love the cuddles this lady brings though the most, as they fill my heart with joy on the good days and hope on the bad days. She always reads and shares everything I write on Facebook and has learnt all about ‘spoons’ (The spoon theory )and my illness and I can’t thank her enough! 

Little Miss Somersault: This special friend is always leaping about and doing somersaults; well in her head she is. She has an even rarer disease than me, called SSCD but we met because our symptoms are so similar. What we found out within days of chatting is that our hobbies are also very similar and then even stranger, we have the same sense of humour. We chat daily through messenger and text message and have phone chats every couple of weeks but if either one of us goes into meltdown we are straight online to chat to the other. There is quite a big age gap, so I call her my little sis but to be fair to her mum I’d be more of a cousin really. We are both longing for the day when we can meet and be well. When we did meet, we were both pretty poorly so it was tough on both of us but this girl is part of my life for good now! When we have a busy day and run out of time to text, we really miss each other as even when we’re in a bad way we message. This has resulted in lots of hilarity and some funny nicknames as there are many spelling errors, especially when I use Siri cos it hurts to type. This is how I’ve ended up being called beetroot face (?) 
The list could go on and on. There are so many friends that live far away but keep in touch regularly and I couldn’t do without them and their visits or Skype calls when they do happen are even more special. There are friends that drop in occasionally and send texts every so often. You keep my spirits up too as I never know when I’ll hear from you. My online friends have been an extra special addition to my life that I didn’t know I needed. I’ve written about you lots in other posts so please don’t feel left out. And then there’s my best friend. My husband and my soul mate. I couldn’t do any of this without him and his compelling strength. Thank you to all of my friends near and far for giving me the hope of a text message, a Facebook message, a call or a visit. Any of those are enough to get me through a day; to know that you’re thinking of me, even when I’m lonely at home; in pain! 

P.S 

If you’re wondering who I am; I’m Little Miss Giggles. Nothing stops me laughing- even this bastard headache! 

 

The Migraine and Headache Awareness month blogging challenge is organised by The American Headache and Migraine Association

Day 12 #MHAMBC #MHAM birds of hope 

Today we have been asked to interpret a quote and say what it means to us! 

  
I see this as an interpretation of the way I live my life. I am the eternal optimist and always see the good in everything. Even on a bad day I will find at least one positive thing to share with my family at the end of the day. 

When I was first unwell with this one long ‘headache episode’ that started In Jan 2014; and there wasn’t any improvement with each new triptan or increase of preventative; I wasn’t seeing life like in this positive way and family life was difficult. I was grumpy and curled in a corner of a room or seperate from everyone stuck in my bed for the most part. But, I have such incredibly well behaved and loving children and the most supportive and self-sacrificing husband that it didn’t take long for me to realise that instead of hiding away from them and my friends; I needed to get a grip, be involved as best as I could and see my friends. Basically, I needed to stop hiding from the pain and get over the fact that it was going to hurt my head but it was going to help me emotionally. Now I say that my head hurts all the time so I might as well hurt and be happy, than hurt and be miserable: it takes the same amount of effort! 

Now, I see my friends regularly and they know I can manage only about an hour or so and that’s only because I’m now on strong daily painkillers. I’ve decided to put hope back in my life and I’ve made sure that even though not every day is good; there is something good in every day! I could not have made it through any of this past 15 months of daily pain without the support of my friends and family. They make sure I’m ok practically, emotionally and socially. Some look after my boys, some come and do odd jobs, some take me out of the house, some do all of that and more!  But most importantly, they listen to me when I need support. They are there when I am struggling to get out of bed, they pick me up when I’m feeling low, they are there when I am starting to lose hope. So with regards to today’s quote they have made sure that I haven’t lost my ability to giggle and gossip and be ME! They are my birds of hope! 

  
Now something else happened very soon after I decided to stop being a hermit! I joined Mission Migraine. I know, I’m talking about that Facebook group, yet again! But you have to understand; this group was my saviour. These were the birds that were singing to me. They taught me that not only was I strong enough to handle what was happening to me, I was stronger than I ever thought I was and even strong enough to help others; to be their voice of hope! This quote below is one that came through so strongly to me as I was finding my way in those early days of joining Mission Migraine. I want to say thank you to all those birds of hope that sang their hearts out to me and helped me to embrace where I was, who I was and how I was! I could make some joke about old birds here but I won’t. The culprits can insert here what they think I might say-haha!! 

   
Thank you to all my birds of hope. I do listen to you, even if my drug induced haze makes it look like I’m not! 
The Migraine And Headache Awareness Month Blogging Challenge is organised by The American Headache and Migraine Association