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

Staying level headed with debilitating pain. 

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

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

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

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

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

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

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

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

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

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

Paprika Jewellery & Accessories

Paprika on Facebook

Paprika on Instagram

Paprika on Pinterestl

Paprika on Twitter

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

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

Chronic Illness Bloggers

Being kind to myself; meditation and selfcare

Those of you who have been following my blog for a while, will know that I love to meditate. It’s one of the only things I can do to help relieve my constant pain; just a little bit. Meditation is taking time out to focus on yourself and introduce mindfulness into your daily routine. You can do visualisations or keep it simple with a guided meditation from YouTube. OI recommend The Honest Guys and Jason Stevenson. They just hit the tone perfectly and even have guided meditations that are specifically designed for those who are in physical pain. They are aimed at anyone who needs guided meditations and visualisations and are great for those with mental health problems; such as anxiety, depression. This two are especially good, as they are generic and great for beginners and anyone else!

Whilst I’ve been suffering from so many infections and heightened pain levels; I’ve forgotten how helpful I find meditation. Now this is one of the main issues that I have picked up on that are not helping me reach my goal for 2017. I made a promise to be kinder to myself. I am much better than I was and losing your way when you have set goals for yourself is normal; our brain fights to go back to what it knows, when we are trying to change our mindset.

So, I’ve revisited some of the steps towards my goal:

  • I have worked hard to limit my to do list. I bought a diary so that I could plan out my social media engagement and tasks and creative themes for my business. I’ve used an erasable pen or pencil, so that I can move tasks if I’m having a bad day.
  • I’ve been able to say no to friends visiting when I need rest days and tried really hard to celebrate my achievements.

However, I haven’t been so good at self care. I have got out of the habit of revisiting my pinterest vision board for achievements and positive quotes. Creating time for myself has been neglected a little; mainly by my meditation practice  disappearing from my daily routine. I’ve also neglected my writing. Both of these are so important for my mental health. I think I will try planning it into my day’s tasks in my diary. We’ve also made changes to my Carer’s tasks for the day and that has been an amazing help for them and myself.

Last week, my writing mojo returned and I have been honoured to join the team at The Fine Print of Pain. This is a brand new site, intended for people with chronic illness to have access to a plethora of advice, information and even has a space for chronic illness creators to show off their talents. This excites me so much. I wrote my first article to explaining IIH you can find this here. The editor, was stunned by my writing and said I had “produced an article that was articulate, focused, and properly done, especially for your first time! I feel so proud of this (and will add her words to my vision board). However writing like this today, about what is playing on my mind is so cathartic.

So, I have started this blog instead of meditating which  was my plan. However, I just felt so sick that I couldn’t settle. Being able to just write about what is happening for me now, has distracted me and my nausea is settling now (with a little anti-emetic help and a dose of oramorph). It’s reminded me how much writing helps me work on my positive mindset. I’m now going to pause, meditate and hopefully have a snooze and then I will finish what I have to say about meditation and self care; the first steps back to my daily routine for a positive mindset. It’s 10:52am. I’m going to listen to a sleep meditation to cleanse your chakras; appropriate for those with an affinity toholistic practice and spiritually.                  Before Sleep: Chakra Realignment

Ahhh….it’s now 12:20 and I’m having my Pukka ‘revitalise’ tea, tucked up in bed and feeling so much calmer. That is all it takes to remind me of the importance of this. My pain is lower, I feel a tiny bit more energised (still having a bed day though) and my shoulders are still lower than my ears! Ok, I still look poorly but I am, so I just have to deal with that!

Self-Care

The actions that individuals take for themselves, on behalf of and with others in order to develop, protect, maintain and improve their health, wellbeing or wellness. SourceThe self-care forum.

I have been working towards all of these things with the support of an amazing group of women. It is run by an  inspirational Coach calls Josie Brocksom who runs Worry Free hypnotherapy and coaching. It makes me focus on recognising my needs so that I can be the best that I can possibly be. I highly recommend this lady and her fab blog too!

Next Steps

It’s now time for me to put into action some of those good habits that I have let slip.

  • I will plan time to meditate at least once a day
  • I will make use of #wednesdaywisdom by posting in here, on Twitter and my Facebook pages (personal and my Paprika Jewellery & Accessories page, which you’re very ŵelcome to visit) to help me revisit my vision board.
  • Write regular blog posts, I’m going to aim for one a week, maybe a fortnight.
  • Take praise on board and capture some of it to add to my vision board.
  • Plan my social media time, so that I don’t let it take up too much of my time; which could be used creatively or as rest time

 

Mental Health Awareness Week-Thriving against the odds #mhaw17

Did you know that those with the most common chronic health conditions, are 2-3 times more likely to have mental health problems? The prevalence of mental ill health is most prominent in those on low income, young adults 18-34, females or those living alone. Mental Health awareness week 2017 is here and I want to write about how I do more than just exist, despite the adversity I face because of my chronic illnesses. I hope that by sharing my experiences; I can help you recognise the steps you could take to improve your mental health, whilst dealing with chronic illness. I want to help all of you take steps: TO THRIVE AND NOT JUST SURVIVE. Learn more about the message from the Mental Health Foundation.

What daily steps could you take to make life more positive? What strategies can you use during flare ups or difficult times? How can you feel confident that you have the toolkit to thrive? I will share some of my experiences and strategies that I use  to thrive, despite constant high level pain, which leaves me in bed about 90% of the time. If you’d like to know more about my illnesses (Migraine and IIH-a rare brain disease that mimics the symptoms of a brain tumour) then please read this.

Before you read any further, I want you to make a choice. Which path do you want to choose-a) ignore your feelings, taking no responsibility for your emotional wellbeing; b) wallow in self pity, moaning about life; or c) take steps to make the best out of a bad situation? If you choose a or b, then I suggest you won’t gain from reading any further. If you chose c, then I will do my best to help. There are many ways to deal with mental health problems; this blog is purely my own opinion. Please seek medical attention if you are self harming or having suicidal thoughts. There are no quick fixes here, but in order to move forward then you will probably need to seek some form of professional help; if you haven’t already. 

SEEKING PROFESSIONAL HELP

I have had counselling prior to becoming ill, after we nearly lost our second baby at birth. Because of this, when the magnitude of my current situation hit me; I was quicker to react and smart enough to know that I needed help. Living with chronic illness means that you usually grieve for the old you. Therefore, it is likely that you will need some form of professional support; such as counselling or CBT. Chronic illness also impacts on everybody whose lives are affected; particularly close family. If is now 4 years since I was diagnosed with IIH, but I continue to actively seek help. Most recently, we felt that our family would benefit from group therapy. This time my husband was the brave one and sought help. At the time, I didn’t realise how hard he found it to reach out, but a few sessions in and we are all feeling the benefits.

Steps to improve your mental health

My first question for you is what do you love to do? What do you spend most of your time doing or thinking about? (Keeping it clean and legal of course). I love to make others happy, particularly my husband and children; but, I’ve always felt the  need to go beyond that. Before I had to give up work I was an Early Years teacher. My passion was making those children smile as they learnt. To see the children run out to their parents at the end of the day, bubbling with chatter about what we had been doing; was my life’s purpose! When I had to stop teaching, I felt utterly lost. So, one day I I realised I needed a new purpose. I decided to use the skills I had learnt during a silversmithing course and my love for writing. I decided that, despite my constant pain, I had to make the decision to make the best of an awful situation. I now write this blog and poetry for myself and others and I run my own jewellery and accessories business Paprika Jewellery & Accessories. So, if you’ve read to here, you’ve probably made that decision too. Take your time to think carefully about what makes you happy. It may take time, but hopefully you’ll find a renewed sense of purpose. You can do what you love, despite being ill. 

This was my first step along the long and winding path, towards thriving with chronic illness. At first, I felt guilty about  crafting, when I was off sick from work. However, it actually distracts me from the pain and I soon learnt that my social workers and GP understood how important it was for my mental wellbeing. So, don’t be put off by feelings of guilt or by feeling overwhelmed. It doesn’t have to be a big thing and you don’t have to make it more than a hobby. You could take up photography or journaling. Ask yourself this: wouldn’t it be nice to do so much more than just coping with your illness? 

HOW TO COPE DURING DIFFICULT TIMES 

I want to be clear that I am not saying that everything will be a bed of roses. There are going to be dark times; that is expected and it’s ok to take time out, to do whatever you need to do, to get through those days. When I’m low, I talk. I talk to my amazing friends, both local and online. Online support groups are a great resource, but they do need to be chosen carefully; some have a negative atmosphere, which could do more harm than good. It may take time to find the right one(s). I have made amazing friends in my carefully selected support groups, others who get it. I also benefit from a group for women who want to live a worry free life, which has helped develop my toolkit immensely. All the groups I’m active in, have a positive and empathetic ethos. It’s taken time to find the right groups and the right people. I have left groups which don’t fit what I’m looking for (that in itself changes),  so it is a case of trial and error. In very dark periods, I reach out to my GP. Acknowledging that you’re finding things tough, can, on its own, help you out from under that dark cloud. 

THE TOOLKIT TO THRIVE  

I set myself a goal at the beginning of the year and break it into manageable steps. I keep a Pinterest board to help me to  revisit it. I also use a diary and in erasable pe, I write 1 or 2 goals a day. If I can’t do them, then they can be rubbed out, so there is no feeling of failure. I also ensure that I think about or write at least 2 positives from my day; usually on the positive post in my Conscious Crafties community; which I set up and is now posted daily by a rota of lovely members. I also try to meditate or use relaxation methods each day  These are the main tools I use, but you will find your own. 

I want to properly introduce you to the biggest influence on my emotional wellbeing-my husband and best friend; Joel.  

Joel is my main carer and I am so proud of him, as he is now the face of Carers for Lloyds Banking Group and a co-chair for the Family Matters strategy across the whole bank. This week he told our story and how my illness impacts on our family’s mental health. In the article, Joel talks how he has retrained his brain to help himself, me and our boys; look after our emotional wellbeing. He writes about the simple act of ncouraging me to recognise my daily achievements; even if it’s just managing a shower. He also talks of how he helps himself and our boys (11 and 13) assert a positive outlook, by asking them on the way to school: “what are you looking forward to and what are you hoping to get done today?” He also wrote about our use of a positive jar, which you can find more about here.

Our story is helping people and inspiring others, clearly seen in the comments about the article. Here are just a few quotes from his co-worker, after reading the posts.

“I like the idea of a positive jar and will try this at home. I have a 14 year old daughter struggling with anxiety issues at the moment….I hope this idea will help her.”

“Your positivity is really inspiring and some very practical advice.”

“What an amazing family you all are. I really like how you acknowledge the realistic things.”

As well as ideas mentioned above, we use the wide-ranging toolkit that I gathered in my teaching career; Joel brings extensive managment and leadership skills and our boys bring their astoundingly mature points of view and striking honesty about what they see. We ensure that there is no blame put on me about our situation, (inevitably I still feel guilty-but hey, I didn’t say we’d cracked it). We also make time for a monthly family meeting and a monthly afternoon tea. 


In conclusion, I know that I am lucky to have a wonderful family to keep me positive, however, there is always support for you somewhere. So, start your positive mindset today by thinking about what makes you happy. If you use visualisation techniques then this would be a great way to spend a good amount of time to think this through. Emotional wellbeing is often overlooked by all of us. For those of us with chronic illnesses it is even more important to try and work on building resilience, flexibility and resourcefulness. Please write in the comments if you find any of this particularly helpful or you would like more information on something specific. I am always happy to help, but please bear in mind that I may take longer to respond if I am having a flare or taking some time out. 

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.

Reflecting on the year and setting goals for 2017 #spoonielife


So it’s the season when we start to look back at the year. I can honestly say that this has been the craziest roller coaster year of our lives. The highs have been unusual in their nature and have come tinged with massive low points. The lows have been monumental and the bits in between have been filled with laughter, love and gratitude.

You may remember that I don’t set New Year’s resolutions. Last year my aim was to try and come off of morphine in 2016.   I can and I will being the motivational words I intended to use to remind me of my goal. I have tried so, so hard all year and particularly after both my operations, and we all hoped each operation would help me get my life back a little. Ucfortunately that is not the case and I am on the same dose of morphine and still incredibly debilitated; most of my time spent in bed.  There is a little improvement but I have only had occasional days of not needing to use oramorph. I continue to wish this more than anything but have to be grateful of the improvements that have happened after each operation. This sampling of less pain has helped me to achieve more with my business and I am learning every day and feel incredibly proud of what I have still been able to achieve!

Health update:
I know many of you want to know how things are since I had my last operation in September! Sorry it’s been so long, but I have been giving the stents time to do their thing before updating you. Briefly, since my operation in September; I can now manage to go out of the house without needing oramorph just for the car journey. Therefore, I have made some progress towards my 2016 goal to cut out morphine. However, I have had to try and learn that I just need to accept that this is the situation I’m in and take the awful stuff so that I can live some sort of life as I’m never pain free! My cognitive function is much improved with many of my loved ones saying how much better my ability to communicate is and that I look a bit better. I have noticed that I feel more like me agai, which is an amazing feeling and although I still forget everything; I can have a proper conversation with my husband, I have an appointment in January to have a ct scan and cerebral venogram repeated to see what improvements there have been with the blood flow and the pressure measurements. I will update you more thoroughly then.


The Highs:

  • Finally managing to have 2 of the surgeries I need and noticing some small improvements with my cognitive function and tolerance to being in the outside world afterwards.
  • Being able to see my son perform his duet in his end of term play. (He was Romeo)!
  • My business growing well but still just about manageable.
  • Having the confidence to begin to sell my poetry and it becoming one of my best sellers; new lines being planned for 2017!
  • Getting a stairlift so that I don’t have to go through labour pain (or worse) just to get up/downstairs.
  • Completing my first ever craft fair.
  • Having a big joint party for my husband and my eldest; where I was able to actually listen to them play all together!
  • Making home improvements; I now have ramps to access the front and back of the house and creating a day room, so that I can spend more time downstairs.
  • Learning new business skills and joining a FB group to help me grow in confidence.
  • Losing some of the weight gained whilst bedridden and developing hypothyroidism.

The Lows

  • Having 2 serious operations; having a piece of skull removed and having brain stents in a operation with a very high risk of stroke; very scary decisions.
  • Being diagnosed with 2 new conditions: hypothyroidism and neutropenia.
  • Getting a stairlift (at age 38-now 39) was a massive thing to admit a need for.
  • Putting on lots of weight due to being mostly bed bound for 4 months.
  • Being dismissed from my job and realising I’m unlikely to get back in to teaching.
  • Our son diagnosed with migraine (huge guilt with this one).
  • Fighting to overturn my neurosurgeon’s decision that a stent would not help me.
  • Having certain friends and family members misunderstand that the operations will ‘fix’ me. IIH has no cure. I may get to a better place, but I will always have this condition. This is frustrating but I’m very lucky that this is only a handful of people.

The in-betweens

  • Having an amazing family that will always be by my side and are my reason for fighting. My 3 boys mean more than I can even try to express
  • Amazing friends that help us, are always there for us and understand!
  • Deciding to have monthly cream teas; including an amazing one at a castle for my birthday!
  • Belly laughs with my family (even though it causes great pain)
  • Difficulty finding new carers but I think we’ve finally found the right people.
  • Becoming officially self-employed.

My goal for 2017!

I recently joined a fantastic Facebook group where we are encouraged to go live. I have managed to in the group and after great feedback will be trying this out on my Facebook page; Paprika Jewellery and Accessories in the new year. I thought the group would help me to build my business but I quickly discovered that I actually need to build on myself..

So all of my highs, lows and in-between have come together and made me focus on my goal for 2017; I WILL BE KIND TO MYSELF. I have listed out the steps to do this and have listened to my friends, my husband and myself and realised that this is what needs to be my priority, I will post about this and the journey I’ve been on to get to this point in the new year. So, this just leaves me to say that I wish you all a very Merry Christmas and Happy New Year. I will see you in 2017 where I will be doing this!

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!