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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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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

Normals illness vs Chronic illness. What happens when Carers get ill?

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Continue reading Normals illness vs Chronic illness. What happens when Carers get ill?

Reflection after #brainsurgery; positive outlook with a hint of disappointment 

After my brain stent surgery in September 2016, I promised that I’d write an update. I waited initially, to see what would happen. Preparations for my online shops; including my Conscious Crafties shop took over. This amazing site helps those of us with disabilities and chronic illnesses, and our Carers to have purpose and stay positive. It is one of my biggest lifelines and has helped me stay up during these tough months. Then Christmas and the post Christmas crash happened. 

All of this has kept me very busy, but, I am prioritising being kind to myself in 2017. This includes spending more time resting and reflecting on my achievements. I have been working very hard to improve sales on my Etsy shop too, but I’ve forgotten how important it is for my whole family, that I look after me. Today I realised how important writing these blogs are for my health. They are a key expression of myself and free therapy. If I feel I can help or encourage others then that makes these blogs even more special. So, I apologise for neglecting you all and I will do my best to keep posting regularly.


Next week I have my brain surgery follow up appointment with my neuroradiologist (The Boss Man) in Cambridge. I am booked in for a CT venogram and cerebral angiogram.  We will discuss the impact the brain stents have had; based on test results and my description of changes and improvements. As I need to reflect anyway, I thought I’d share this with you.

Following surgery, we noticed an immediate difference in my cognitive function.When I returned to the ward, even behind the large sunglasses; my husband could see a difference. I continued to improve and almost felt like Laura again. I have been able to hold conversations again, instead of just information swapping and I now even ask how Joel’s day has been. My boys engage with me more and seek help to help resolve issues again. My GP has noticed that I slur my words less and my friends noticed a change too. One friend told me how she used to leave my house upset at how distant I had become. I’m so glad she could tell me this, even though it was upsetting; but we are both so happy to be properly connecting again.

All parties were unsure of the impact the stents might have on my pain levels. I’m not going to lie, this is the one thing I was and am still desperate to change. Despite knowing that this was only a pawn move in the game of chess, that is my health, the opposition (hospital politics), may just be caught out with the strategic moves we’re making towards their King; (jugular foramen decompression surgery). We knew it was unlikely to be a game changer, but I’ll never give up hope. 


I was hopeful and as the weeks went on, I noticed a small improvement in the severity of the constant pain. This was quite something after having to replace the large dose of naproxen I was on, with paracetamol; due to needing to take aspirin as a blood thinner. Although still in constant pain, I was going downstairs more regularly and coping better with the pain levels when I did go out; using less oramorph. I did and do still suffer heightened pain levels and insomnia after any activity. The insomnia drops me back into the pain loop, until I manage to reset my spoons. Going against my consultants’ recommendation, my GP decided that until the pain was more stable; I should continue to use morphine (a hint of disappointment).

Disappointingly (more than a hint), I feel I’ve taken two steps back in all aspects since Christmas. I’ve passed out a couple of times and been holed up in my bedroom with chronic fatigue, horrendous pain etc. I feel safe in my bedroom, I think; I can still make cards, jewellery and write poetry as a distraction from the pain. Since having the stents fitted; I’ve only had one or two vertigo attacks, however, the pulsatile tinnitus, phono/photo sensitivity and hyperacusis are all much the same. 


Writing this has made me reflect on our life before IIH barged it’s way in to our life, our old life where I would plan every minute of every day. Disappointingly, once one of you becomes chronically ill/disabled; you and your family unit have to make huge life adjustments. However, I wouldn’t change the life we had before IIH; other than spending more time together. In December, I watched my son’s last ever Christmas show from inside the hall. I am engaged in life again and I have seen a glimmer of hope; we may yet reach check-mate. So, my trusty earplugs, wheelchair and sunglasses will still be with me when I journey back to Cambridge next Thursday. These stents were never meant to work miracles, but there are so many positives I can take from this latest episode of my story. This is yet another piece of evidence that messing about with my jugular vein, really is worth the hassle.  I will let you know what The Boss Man says about our next strategic move.

 If you are new to my story, then you may wish to see where the game really got started, over a year ago, our first chess move, made in October 2015 Read about it here. Or like my Facebook page here for all my updates.

My world: mum, wife, creator, teacher

Two years ago I wrote a blog about the guilt that comes with being a chronically ill mum. There are still ups and downs and guilt does still come and slap me in the face ocassionally, but I have strategies to deal with it now. I also try and remember the words of a counsellor I once saw; guilt is the feeling of being angry with something/one but not being able to express the anger so it turns in on yourself in the form of guilt. I wanted to write a more positive post 2 years on and explore how these roles have evolved and the lessons I have learnt on this tough journey.

I have come a long way in my understanding that this is going to affect me life forever. There were never any guarantees with any of the operations I will and have had. That acceptance in itself is a huge thing to process. There are many issues for all of us to cope with still , but we have to believe that things will eventually improve and become less invasive. To see a little improvement with each operation gives us optimism for the future.

In the title of this blog, I describe myself in my many roles, but I am first and foremost a wife and mother.  Depression, brain fog and dealing with guilt about being ill, had dampened my connection with these roles. I went through a long period of feeling that this illness was somehow my fault, which it is not at all, of course. I am now mostly able to fill my head with a positive spin on this and we make a concerted effort to discuss with the boys that the situation we are in is due to my illness; not due to choices I am making. We have developed strategies to support the whole family through this but of course I wish I could just get up every day and be a normal mum!

We are all affected by the constraints of my illness, all the time, but most profoundly when I have a long spell trapped in my bedroom cocoon. Weeks not days, of being barely able to move have taken it’s toll but we’re gradually turning this around by the adjustments we’ve made to our home (discussed in previous post). I am determined to live as normal a life as possible, even if it costs me spoons. We only have one life don’t we? Our new normal has to take into account my illness, but if we wait until I’m well enough; we may never do what we love. If I wait until I have no pain before I engage in discussion with my friends or carers then I will just be lonely. If I wait until I can walk then we may never go out again! Normalising this is hard for us all but my personal grieving period is coming to an end.

I believe that I am a better mother and wife because of this illness. They say everything happens for a reason. Now, the joy of being at home, especially when I make it downstairs, when the children get home from school and my husband gets home from work is thruly the best feeling and I am lucky enough to have that every day. I wouldn’t wish this disease on anybody and it could have easily ripped us apart, but with the investment of time, energy, commitment, often a little mediation, from all of us; I truly believe we are all better people from this experience. Oh boy, it’s tough; but as a team, we are unstoppable!

I have no real desire to go back to teaching, but I still think like a teacher and the future I dream of involves my love of teaching and all the skills I have gained, being combined with my creative business. Teaching isn’t a job, it’s a way of life and I will always be a teacher! Teaching made me confident, it enthralled and excited me and I would never have dreamt that I’d have my own business, especially not whilst being so ill. Selling things I have handmade, fills me with pride and a sense of empowerment and definitely keeps me sane!

I feel lucky to have such a wonderful life. I really have made amazing memories with my husband and children. I have fulfilled my childhood ambition and achieved so much more than I ever expected in my teaching career. I have met so many people that are compassionate, empathetic and loyal, shown in the amazing support network around me and from my new group of friends. I have been lucky to travel to great places and see amazing things and even now, I still see life as an amazing gift. I cannot always feel full of positivity and spoone life is filled with many challenges for all of my family every day, but I have a greater understanding of my path. This life has given me the tools to cope with change and adjustments, whist guiding my family carefully alongside me in this journey. It has made me realise that you cannot wait for things to get better or until you have enough money or until you wake up in the morning. We never know what is around the next corner so please grab every opportunity with both hands, don’t wait for life to come to you. Always say goodnight to your family and lastly, never go to bed on an argument! Life is just too short!

My life with a #raredisease. All the emotions of the rainbow.

Firstly, I can’t believe I’ve not updated since June! It’s such a busy time of year, even not being a teacher anymore doesn’t seem to slow things down. So what have I been up to?: 

MEDICALLY- I’ve been getting more and more frustrated with the pace of the baby steps. The first stage of my care plan; the Styloidectomy (the bone removed from my skull in January) has worked. It’s opened the jugulat vein that was compressed and we have noticed some improvement in my ability to engage in conversations. More recently, we have noticed that I can cope with noise a little better, even managing to enjoy the whole of  Luca’s end of year play! Previously I’d sit outside the hall and just peep in for his part! 

However, as well as the right sided issues, I also have constriction on the left hand side; the pulsatile tinnitus moving to that side to ensure I don’t forget it. So, The Wizard (my ear and skull based surgeon) passed me over to The Boss (my neuroradiologist) and it was proposed that we proceed with the plan to insert a stent to open the blockage in left transverse sinus. This won’t solve everything as I have many other growths on my skull and more compressed veins that we cannot treat yet. This is due to the delicate nature of the surgery meaning it is not currently available; politics!! So the stent is not a solution but should hopefully (please)? give me some relief.

We were not told in January that this proposal had to be signed off by a neurosurgeon and the neuro in the team refused to sign off on the stent; advising us that he wanted to go through all the tests again, plus an ICP bolt (literally a bolt surgically implanted in your skull to measure the intracranial pressure more accurately). This meant that my surgeons couldn’t agree and reached an impasse. As you can imagine, I was devastated. The temptation of even a little relief is all consuming and I have been really struggling with my journey hitting yet another stumbling block! More on this to come….
EMOTIONALLY- I’ve not been in a good place, largely due to the medical frustrations. Life with chronic illness is tough and living with constant pain; mostly unbearable. My GP (and myself) are reluctant to use anti-depressants and I’ve already  had counselling sessions that were useful to a point, however, there is not much more that counselling can offer me at the moment. We decided, therefore, that I will have to find my way through this quagmire of pain, disappointment and loss of control, myself. I have mostly felt stuck in a sink hole: floundering and becoming more and more depressed.


 It’s been a dilemma for me whether to even write this post but instinctively I know that I need to portray the whole picture and that just showing the funny side or even just the factual day to day world of chronic pain is not coherent and may be slightly misleading to you the reader. So, the truth is that there have been awful days and nights; tears, panic and complete anger at the hand I and my boys, have been dealt. I’ve mostly felt that I have been left to rot. Guilt comes with dependence on others, especially leaving my husband to have to constantly fight all my battles. 

Ultimately it comes to this: I have had to cram my thoughts with how I have been shown more love than I ever deemed possible from friends old and new. This is hard as I go through the agitated emotions that come, each time someone I’ve relied on; lets me down. But, in my heart, the truth that I have a responsibility as a mother and a wife, ensures that I delve deeper than I ever believe is possible, to find the strength to continue this journey. 


PHYSICALLY: My mobility continues to deteriorate and any slight exertion: standing up,  brushing my teeth, wrapping a gift; leaves me out of breath and completely overthrown by my extreme and debilitating hyper-sensitivity. I’ve described before the pulsatile tinnitus and it has returned with a vengeance in the past months. It takes over with any exertion, making life disorientating and sometimes impossible to cope with being around others. I fall more often than everbefore and despite havuing THREE walkers, I have still managed to break a toe, sprain my ankle and hurt my back many times. 

So we decided that I could no longer continue to live the life of a princess (or more realistically, mad woman) trapped in the tower. You may have noticed on my page Tears of strength that we have had our driveway levelled, ramps put in two exits and the most amazing invention known to mankind: a stairlift, fitted so that I can twist amd turn my way down and round the corners and get to the lounge, my new day bed and craft room. It’s been great to be able to begin to reintegrate myself into family life. The independence of being able to choose where I go has been a real boost, just when I needed one. I still hate the stairlift and try and stare it out on days spent in bed; however the relief of knowing I never have to crawl the stairs again and despite it giving me motion sickness (of course) it is a real lifeline.


 (In my day room) 

So this whole journey, especially the last few months, have been a rainbow of emotions:


Resilient throughout incessant tests of strength; waiting for answers and hoping, always hoping.

Awestruck by the enduring love, positivity and energy, portrayed by those that feed my soul.

Irritated by the subservience I have to endure; my future always balancing in another’s hands.

Nervous about the the course of time; the unknown path and destination of this unplanned expedition.

Blundering through life, unable to get my bearings; everywhere I look, a stark reminder of what was.

Overwhelmed; humbled by the kindness, love, support and encouragement, that I feel I don’t deserve. 

Weakened; as delicate as a spider’s web, if one fragile strand fails; life tumbles into fragments.

Solidarity between my allies; my circle of support and the creators of my hope. Always hope.

So to the latest news: I imagine my The Boss having this kind of impact on others….t


I think he thoroughly but professionally destroyed my neurosurgeon (nameless as not worth the effort) and has managed to delicately persuade a more senior neurosurgeon to take on my case. Now we just wait to see what happens when we see him in the next few weeks. I hope  we will be able to prove how much I need this operation and have the tiniest amount of influence over my future. Thank you for your continued support in my journey. I will update you as soon as I can and will have a nickname for my new neurosurgeon very soon! 

Day 4 #mham16 @WHO says #Migraine is the 8th most disabling disease in the world. #MHAM #disabilaties

@WHO says #Migraine is the 8th most disabling disease in the world. #MHAM

The time I’ve spent in the last year really trying to get to know my migraines hasn’t been fun. I struggle to distinguish between the symptoms of iih and migraine. I’ve spoken to other sufferers of both (it seems common to have migraine as a co-morbid condition to the rarer IIH). Mainly, the consensus is that the migraine is pulsating and the IIH is more of a vice crush, ice pick and feeling hit by a bus whilst suffering with flu. And as it is also called pseudo tumour cerebri-it also mimics brain tumours; hence my mobility issues and the symptom that found me my diagnosis- pulsatile tinnitus. To be honest, I don’t think I’m having many migraines at the moment. But, I don’t really know for sure. 

However, we have, this year,  discovered that I definitely suffer from hormonal migraines and that when I have those I pass out. That’s pretty disabling isn’t it? The time I’m out isn’t for long, but the aftermath lasts for days. I lose the ability to walk properly (well, as I struggle with that anyway, I have to think back to before I was immobile and after I passed out then, I struggled to walk. I have to go to bed and I just cannot do anything. I live my life in the dark mostly anyway and I always have horrendous nausea, but this brings it on in full force and sometimes for what feels like days, but in truth is about half an hour, I spend retching over a bowl, shivering and shaking.


I’m having a break from these attacks at the moment though. The morphine has had an unusual side effect on my body (my GP even had to look it up); it’s stopped my monthly cycle. So I don’t have hormonal migraines at the moment, (well, at least not horrifically violent ones), but when I do; they are pretty disabling…says the person with the disability that requires a walker to get from her bed to the en-suite bathroom! 

Then, there has been the time spent getting to know so many of you, my fellow sufferers; those of you who can’t hold down a job, go out of the house or are even trapped in their bedrooms. It’s not fun being trapped in your bedroom or even  realisation, that there needs to be a complete shift in perception. So that when I think about the future of migraine life for my son; I can hope that there may be new treatments available, that employers will be more willing to make reasonable adjustments for those that need them. That maybe one day migraine won’t be used as an excuse to pull a sickie, it won’t be pushed to the back of the queue for funding and that it may one day even be understood by more than a minority that, MIGRAINE is classed as disabling as quadriplegia and active psychosis; and yes, you did read that right! 

The chore of resilience #chronicillness poem

The chore of resilience

   
The chore of resilience beckons the unwell.              

It’s nothing but fervent incase you couldn’t tell.
It’s a long road, so they say, reeling off the routine.

But the desperation inside, means that you’ll concede.

Volatile, confounded. Another slice of the game; 

one rung up the ladder, one step closer to the main.
You ready yourself, conforming to the burden. 

It’s time’s up now, no more waiting. This must be the end. 

The finale is complete. But wait, there is no change:

We’ll wait until tomorrow, to see if it’s the same. 
Back down that rabbit hole, you spiral vaguely again. 

The world hastening by, was that another lost friend? 

You must snap back, or continue whirling forever, 

There ARE more stints, but we’re with you. ALL OF US TOGETHER! 
No time for impulsiveness. You need a rote right now.

You’re more than courageous, but this is turning sour, 

The vehemence is roaring now, it’s just been too long. 

Tenacity has taken hold; you’re leading this new song. 
Dutifully, we’ll hand-hold you, guide you through the pain.

Your resolve; life-affirming, your subtlety, arcane.

Unyielding and steely, you must keep on keeping on 

My friend, your lion-heart and worthiness; keep us all strong. 
The chore of resilience tests all those unwell, 

When lost, look for loved ones; make your heart swell. 

  

Life, friendships and adventures of a pain warrior

 

 ‘Life was meant for Good Friends & Great Adventure’! It’s got me thinking…..

My Life

I met my husband/ best friend at university and much to everyone’s surprise we actually stayed together (19 years in Nov), got married and had two children. I had occasional bouts of sickness that we put down to allergies, hormones and stress (now we know they were migraines). Then I got really sick, the facial pain so bad that I couldn’t lift my head off of the pillow (diagnosed as trigeminal neuralgia-it wasn’t). Well, I say, really sick, remember everything is comparable. After a few weeks of painkillers and starting amitriptyline, I gradually got a bit better. My quest began to find an holistic therapist,  but I was constantly disappointed; each one unable to help resolve my constant headache that plagued me. My boys were, young still, so I worked part time, I couldn’t have done more. So I struggled through, with low-mid level pain on most days. On my days off, including weekends, my pain spiked, so I was amazed when I eventually found a kinesiologist who helped; with diets, homeopathy and tinctures. 

My Adventures

Life carried on in a similar pattern for the next 5 years. Although, adventure came back to us. I finally found real relief when I was referred to a cranial osteopath who practiced kinesiology. I got fit, doing Pilates and swimming regularly; I built my career to senior level and we socialised with friends. Our friends started getting married and having babies too and we loved visiting them, just as they had years before, when Zeke was born. We went for days out: to zoos, farm parks, museums etc. Joel and I started going to see live music again; our shared love of music, so important to us. We made memories in Rome and Tuscany, the south of France and our trip of a lifetime to California and British Columbia! Those years, filled with happiness, exploration and living LIFE! How little could we know what would happen to change our world forever; tested our friends and arrested our zest for adventure. It sometimesstops life for a while, but we are beginning to look at it differently; a new adventure so to speak. One that has tested us to the core, but we’re strong, and it’s reinforcing us a unit and making us more formidable. People call me brave, I don’t think so. I just have to do this! You would be too, if it were you! (But I wouldn’t wish this on anyone). But it’s not just me that has to be brave: Joel, Zeke and Luca are just as bold, they fight this battle with me; grieving, angry, resilient, sad and determined in moments; how it affects us all in turn. 

My Friendships

Becoming ill in 2014, tested mine and Joel’s relationship; I guess it still does regularly. He has to work so hard: not just looking after the kids, working, cleaning the animals, sorting the house and garden out. He is also an unpaid carer; helping me get ready for bed every night because I’ve no energy left to pull off my socks. He has to help me to the bathroom when I struggle with those measly few paces, he even has to help me shower when I can’t. Someone told him the other day that he was a better man than them, that didn’t think they could stay if it was them! Joel was stunned, but many relationships fail due to a partner becoming chronically ill. Our love for each other hasn’t changed, even though our life has. I am only brave enough to fight, because of our marriage: built on love, understanding and the need to continue to make each other laugh! I will always have that friendship and love, I trust and I know (because he keeps telling me-tee hee). I know I’m lucky,

I’ve spoken before about how blessed I am to have kept so many friends. Due to my vulnerability; some people have become very special to me, because of what they do for me, which can be as simple as sending me a card to say they’re thinking of me, giving me a beautiful bunch of flowers or something unique, like my friend who gave me a toy of Merida from the film Brave when I went for my surgery! I’ve spoken on numerous occasions about new friends I’ve made through social media. This can be hard to understand, but when you get so lonely, to know that someone is always in the iPad, is a huge relief 😉. You can rant, because someone will have been there; you can be silly and they laugh with you (well, so they say); you can cry and someone will always listen and give advice. My network of friends that help us out in myriad ways are, as always, our life savers. They help our fragile world to keep spinning on its axis. You know who you are; thank you! . 

 

I haven’t been brave enough to speak about the few friends who have disappeared. I don’t want to upset anyone and it’s still raw. I question it often; what did I do? say? I don’t think I did anything. Talking to my online friends; I’m lucky, most people lose many more friends than me. A friend went off radar within weeks of my illness becoming serious. A best friend that I’ve shared live changing events with. Gone. I know it shows that they never really had my heart,  but it still hurts deeply. Then, there are the friends that disappear for months and then suddenly message you, expecting you to jump and arrange to meet. I was tolerant until recently, but I’ve decided now that they are not being friends. If they were, then they’d know that I’d had brain surgery and would have been in contact to find out how it went, in fact, one ‘friend’ ignored my text telling her all about it! Now, more than ever, that I’m fighting anemia and trying to tackle an under active thyroid too, I’m starting with less energy each day, therefore I just haven’t got anytime to waste on anguish. (P.S if you’ve reacted to any of my FB posts, then that counts as connecting, *sigh of relief now)! I’m hoping some of these friends will realise what they’ve done before it’s too late. For some, honestly, it’s too late already!  

My New Life, friendships and adventures; now that I’m a spoonie!

So my new life, we know, consists of lots of sleep in the day and no sleep at night (currently (2:30am); leaving not much time for adventure! I’ve been bed-bound for most of the last 5 months with my biggest adventure being a trip to Cambridge to get a piece of skull removed. I’ve missed adventures with my children, such as watching Luca singing in his many shows and going swimming and cycling with them (and Joel)! Now an adventure for me is to get downstairs once every weekend! This has become one of the highest sought adventures any member of our family could ask for. We all get so excited if I make it. Luca got excited about us watching a film together in bed this afternoon; Zeke and I have 1:1 chats when the rest of the house is quiet after school; Joel and I get excited that we can watch ‘Bones’ if I make it downstairs! ”

I want to get some of what we had back. I know that is unlikely, but if I can get just enough to join in with life again, have some kind of adventure and my biggest dream; to be able listen to music again! We can’t wait for the day to come when I can make it out for a trip to a cafe for tea and cake. Maybe this stent might make it a reality. Whatever happens, I’m building my strength and stamina up so that we can use up our Christmas present experiences. Joel has a voucher for a spa afternoon (he might take me too 💕) and I have a pedicure treat. I am determined to prepare myself for these. All of this is preparation for the biggest adventure of all, the only thing that we’ve planned for ages; Joel’s 40th birthday party later this year. I am determined to be able to cope with going to some of the party and ideally stay long enough to see him play with his band. Although we don’t know how I’ll be, this time we have to make sure an adventure isn’t missed because of me! So it’s fingers crossed for that operation now. Let the next adventure begin, with the support of my family and friends behind me; I can take on all this new life has to throw at me! Maybe I am brave, if it leads me to be free then I’m in!