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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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Skull surgery again #braindisease #iih #iihwarrior

On Friday we took another trip to Cambridge to see the Ear and skull surgeon; or The Wizard as I call him.  He could really see an improvement in me as if not seen him for about a year. It was so nice to hear that, as you don’t always notice what a big change there is over that space of time and he hadn’t seen me since my stent operation in September last year (2016); which we feel had an effect on my noise sensitivity; although I still hear the pulsatile tinnitus and have to wear ear plugs when I’m out of the house. He could also see the vast improvement in my cognitive function that improved after the styloidectomy I had in January 2016 and again after the stent surgery. I’ve only just started noticing these benefits again, due to suffering from that horrid infection for most of February and March and struggling to get over pushing myself to much at Christmas. Everything is feeling very positive. 

It was a very quick appointment as he was just confirming that the next operation is on and what the side effects might be.   He will be removing some of the bone of the C1 vertebrae on the opposite side of the jugular vein to where I had the last bit of bone (the right styloid process) removed. This should open up the area for the blood to flow more easily through my constricted jugular vein; however, I may need a stent put in afterwards to get the full benefits. The side effects are the same as with the styloidectomy; possible weakness of the shoulder, a hoarse voice and other minor side effects. 

Below is a diagram showing the skull. I have highlighted the area where they need to make more room for the jugular vein (allow the diagram shows these areas on the left side of the skull  The Styloid process is on the left of the circle; sectioned off. This has been removed on the right side of my skull. They will be working within the right half of the highlighted circle for this operation. 


We are just waiting for The Wizard’s notes to get to the secretary and then we can book a date and this should be soon as we are very lucky to have private health insurance that covers all my treatment for the IIH. (Idiopathic Intracranial Hypertension) 

To say THANK YOU for all of your amazing support for my next skull surgery and for your constant patience and understanding; I am offering a chance to win this beautiful heart jewellery set of necklace, earrings and bracelet. They are all made with blue and green glass pearls.


💚💙💚 FACEBOOK GIVEAWAY 💚💙💚

Click here to enter
💚LIKE & COMMENT ‘yes please’ on my Facebook page to win💙

The giveaway will run until I reach 500 followers or I have recovered from surgery-whichever happens first. There is NO set deadline; however I will give you at least 24 hours notice before I close the post.

So to take part: 

***👍🏻 LIKE the Facebook post

***COMMENT on the Facebook post with the words ‘yes please’ or similar

***SHARE the Facebook post. This is not a requirement for entry but there is more chance that this page will reach 500 likes sooner. It would be a really kind gesture, so a HUGE thank you if you share too! 

****If you’re feeling super kind then you could SHARE my Facebook page too.

I will let you know my surgery date and will post updates when I can. For more information on IIH (Idiopathic Intracranial Hypertension) go to: 
To find out more about IIH click here

If you would like to make a donation then please visit: 

www.justgiving.com/iihuk
Thank you again, Laura 💚💙

* This Giveaway is in no way affiliated with Facebook or WordPress

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.

Chronically ill at Christmas…I knew this would happen! 

I knew it was coming. The punishing pain. Not just the 24/7 pain that I have had to learn to live with; the pain where my own voice hurts. No this is the punishing pain; the cactus needle that pierces my eyes and the vice that traps my head, whilst my brain builds up like a pressure cooker. In fact, that doesn’t even describe this pain that overwhelms everything.


The punishing pain is aggressive and non-responsive. It can’t be beaten with painkillers and opioids are a joke. Sleep is near impossible, my teeth chatter and my soul whimpers. My whole body aches, from pre-empting the pain. As I write this at 3am, as a diversion tactic, I question the acupressure and breathing techniques, I used discretely in the restaurant! I tried to divert the collateral damage, but it’s too much for my body and every wasted attempt is spat back in my face!

But, I knew this was coming, so time to be strong!

I have done the worst thing and the best thing that a severe pain sufferer can do;  I went out with my family for a meal. I laughed and joked with everyone. I’m sure the number of jovial insults thrown about will be brought up in future conversations and this followed 5 days of managing to spend a few hours downstairs for Christmas festivities, including going to my friend’s annual Christmas Eve get together; where I do get to lie down and get looked after by everyone.

So, I knew this was coming!


The sensible thing would have been to bow out when I woke in horrendous pain. However, I chose to push through it when I knew I should rest, because I love life and love my family and friends. Now (at 3am) I have to stop worrying about what tomorrow will bring. I will rest, but I won’t stop living. The consequence of this is that I know the pain that will punish me.

However, there are many positives from pushing through the pain. My boys both said how proud they were of me coming downstairs for 5 days in a row! (Only for a few hours, but still). Zeke said how lovely it was to be all together for the meal. I wasn’t lonely, left in my bed, whilst everyone else was having a good time. I got to sit next to my husband to eat for once. I have also been able to enjoy everyone’s faces as they opened their presents; I’ve curled up in front of the open fire; eaten delicious festive meals cooked by my husband and watched Christmas films; snuggled up with my boys, well Luca anyway.

I have been smiling, pretending; but of course, I knew this was coming. This is something we are still learning to accept. I can’t live life from bed; I have to love the life I have and be part of the memories we make. We all knew this was coming.

Now, I’m paying the price with painsomnia. It’s the next day and I hurt  too much to sleep, I managed a few hours though.

With chronic illness comes many choices, mainly how we pace ourselves. So this week I’ve made the choice to join in jwith Christmas as much as I can, even if it’s meant lie-ins til 3pm. I could have used my spoons more wisely, but this is my life now; not just an illness excursion! I can’t get this time back, so I chose to pretend to myself that the punishing pain would hibernate, but deep down I knew…..

I knew it was coming.

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! 

A little slice of normal. Making the most of life and accepting consequences. 

Today I am lying in bed, my head behaving as though been smashed against a rock…many times; my body so sore, I am struggling to sit up. My insomnia fuelled attempt to go to our bathroom, at 2am, with just a walker for the 7 steps; had me  narrowly missing falling over the top bar. I could cry; the builders have chosen today to knock down the side door’s steps so they can build me a ramp to get in and out of the house independently. I’m so excited about it, but why today. The cars going past sound like I’m sitting in the middle of an airfield. All my senses are heightened as my brain sktruggles to process the normal world. 

Yet, this week I made the choice to have broken sleep, to have searing pain; tears falling constantly from the intensity. This week I am facing the consequences of having my little slice of normal. I may be bed-bound and in constant pain even with constant morphine and diazepam meandering through my veins. I may not be able to walk without stumbling and talk without forgetting. Yet, I chose these consequence for one dose of normality. An inevitable swap for challenging my disobedient and unforgiving brain. I chose to try live one of my dreams; I chose to sell my jewellery at a village fair. 


I have been desperate to attemot this, but I knew what the week or two afterwards would be like. I knew that I would have to rely on others to enable me to get there, set up and possibly even take over; I couldn’t ask for such a selfish adventure. So, when my dear friend, Kim, offered to help me set up and take over if I couldn’t manage to stay….well, you can imagine.

I spent the next few weeks building up my stock, and organising the display; to complete the vision I have been planning for months. I hadn’t been this motivated for a very long time. But during every close of a jump ring and polish of the silver the image of the dreadful, devious stairs kept flashing their demonic smile as the day grow closer. I had said I wasn’t ever going to tackle them again, but my thirst for a slice of positive normality outweighed this extreme life of darkness.  This was it! My chance to make the most out of life again and do something for me; sticking two fingers up to my neurological conditions. 


On Saturday morning, I woke up and still couldn’t ‘rest, to conserve my energy’! Today, was all about me being normal; well, as normal as anyone in a wheelchair with tinted glasses and ear plugs can be. We arrived at midday and I was breaking all my own rules as soon as we started setting up the table. I couldn’t just sit back and guide my enablers to make the table look great. My perfectionist, spoon stealing nature just couldn’t hold back! I loved every minute of being at that stall, the buzz of my first sale, slightly lost as I was still fiddling with tags and placing items temptingly. I had that constant niggle at the back of my mind telling me that I was doing too much. But, being out and sociable (my pre-spoonie nature) was just too enticing.


I started flagging an hour or so in, but after another dose of oramorph and a swig of determination; I was back selling my wares at a very busy stall. Joel ensured I was kept supplied with cake and scones. I had so much fun selling my creations and hearing the children I used to teach, being excited to see me! I want to do more, even now when I’m suffering the after effects. It’s so important for anyone to have a positive mindset,, especially us spoonies who need a boost of courage every day. I am already thinking about the next time. My stall set up needs rethinking slightly, but I have definitely caught the bug. 


So, whilst I have spent every minute of every hour, since 12pm on Saturday; in even more devilish pain than normal. I have done my best not to cry and I am still full of the positive energy that seeing people wearing and enjoying my makes always brings. I’m reminded as I write this, that I don’t make my creations to make money (and believe me, what I make is usually enough to replenish my stock), but as therapy for myself-approved by my Dr, social worker and OT-to keep my mind as active as possible and keep my spirits high. I cannot make anything without others bringing me the boxes of beads, buttons and tools and I struggle to do the accounts etc. but I will strive to continue to make with my friend’s and family’s support. And maybe even build up a thriving buisness one day! 

I may be hurting physically but, I made the most out of my day release to last me a month’s worth of consequences. My emotional and mental breakage, now has a vat of molten gold, to fix the wounds and make me even stronger. I’m feeling rather proud of how I coped with my little taste of normality and can’t wait for the next time. 

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.