IIH and skull surgery: part 2 #IIH #brainandspine

Skull Surgery

It sounds much worse than it will be. This is the next step in of my treatment plan. I have Idiopathic Intracranial Hypertension (IIH) and this is my journey,

To prepare for surgery; I’m resting; well, resting as well as anyone with needtodoitis can! I am on strict instruction to allow my body to be in the best condition possible, for my surgery on Thursday (15th June 2017). I’m also owning up now, to not fully understanding the recommended medical document, at the end of this blog. 👀

Firstly, if you are new to my blog or need a recap please read this post,, written after my first skull operation; a Styloidectomy. (I just re-read it; I’d forgotten some of this-yikes)!! Please be aware that there’s a surgery scar in case you’re squeamish.

Background

In January 2016; I had a Styloidectomy; the removal of the bone behind your ear; called the Styloid Process (red area on the diagram). My right Styloid process was removed by The Wizard; my ear and skull surgeon and one of the magical team I’m under in Cambridge. I have constricted veins in my head, mainly the jugular vein; affecting blood flow from my brain; leading to a build up of pressure in my skull. Following that op, I was able to have a two way conversation again; after two years of complete brain fog. Everyone noticed a difference, but I was still in 24/7 pain and unable to walk unaided. My memory was still poor and I still struggle with words,

img_7354At the time, we thought that the next step was to have a stent placed here. Due to being one of the patients to have these procedures; immediately after the trial group; I have to be prepared for rules changes. I had stent surgery of the left transverse sinus in September 2016, whilst they waited for their paper to be published. This is now available and they are  the first team in the world to use these methods, for this rare brain condition. You can find out more about all of this, in the ABOUT/BIO drop down menu: what is IIH?  

I’m lucky enough to benefit from what they have learnt in the trial. They found that placing a stent in the jugular vein, after removing the Styloid processs; was less effective than expected. But, once a stent is in place it can’t be moved; so patients often had the mastoid process removed, to relieve some of the pressure on the vein.

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Mastoidectomy

This led the team to the conclusion that it would be more effective to perform a mastoidectomy before stenting here. This would make room for the jugular vein to take the stent more precisely and possibly mean that stenting wouldn’t be necessary. I’ve highlighted both the Styloid and Mastoid process, in the diagram above.

I have only found articles about mastoidectomys for other conditions; as both of the surgeries used; aren’t new procedures. What the Cambridge team have done, is to think outside the box and are use tested surgeries in new ways; helping IIH patients with restricted venous outflow. I am referencing one of the clearest (and least scary) articles, to try and explain the procedure; although this is for other conditions.

This procedure is usually performed when a patient has: had infections that have caused hearing loss, tumours or for patients being fitted with a cochlear implant. The mastoid cells and process form part of the temporal bone. A mastoidectomy traditionally removes an area of mastoid cells; which which has a honeycomb structure, due to bone being formed around air pockets. However, the mastoid process is below this area; highlighted in the first diagram. This bone is denser and  connected to the C1 vertebrae, therefore attached to the top of the spine. This video explains the anatomy of the C1 vertebrae. Cervical Spine anatomy

There are many veins, nerves and muscles attached to the C1 vertebrae, which is essentially a pivot; allowing us to extend our neck and nod. The mastoid process is the outer part of the skull; attached to the occipital area and provides attachment for many muscles. Thankfully, I have complete faith in The Wizard and he’s assured me, that if anything; he’s conservative with how much bone he removes. He will drill the bone just enough; to make room for my jugular vein to work more efficiently.

Risks and Further surgery

It’s a similar surgery to the styloiectomy and has the same risks: which aren’t life threatening. There’s a possibility of having a weak shoulder/arm or a hoarse voice  following surgery. Despite the serious nature of the operation; I will be only be kept in overnight; unless there are complications. I will have a drain in overnight; used to   try and prevent side effects. In the future, I may need a stent here; it’s been the plan since the start, after all; but we have to focus on one step at a time. If you wish to know more about the anatomy and a typical mastoidectomy; please read this article

I’m sure I will be back very soon with some amusing anecdotes from our little adventure. Thanks again for stopping by; please don’t hesitate to ask questions. Remember though, that this team are the only team in the world treating patients like myself in this way; so I may not know, or be able to find the answer.

 

Chronic Illness Bloggers

#Migraine and #Headache treatment often requires more than one approach. http://poht.info/2qNtzdg #MHAM #MHAMSMC

Welcome to Day 6 of Migraine and Headache Awareness Month.

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Since I was officially diagnosed by a neurologist in 2009, even beforehand, when I was lost with misdiagnosised and undiagnosed symptoms; I have opted for treatment other than that suggested by my past and present neurology teams. I would like to discuss the most effective treatments that I’ve personally experienced,

I have used the treatments below, alongside prescribed medication; since being diagnosed with migraine in 2009 and Idiopathic Intracranial Hypertension (IIH) in 2014. Please seek medical advice before trying/using any alternative therapies. They should be treated as complementary therapies and not replace prescribed medications. 

Diet, Vitamins & Minerals: 

I’ve tried vitamin and mineral supplements to help my symptoms, since diagnosis. We all know that we need these to stay healthy and it is usually the first thing we explore when we have chronic or recurring illnesses.  I have been prescribed supplements by my GP (family doctor), nutritionists and kinesiologists (I will discuss kinesiology later), since my migraines started; 20 years before diagnosis. Read this to find out more about whether we need them in our diet and who might need them.

Personally, I’ve had the best results from supplements with a high dosage; prescribed by trained therapists. I’ve tried more than I can remember, but my go tos are Zinc, EDA (fish oils) and Ascorbic acid (pure vitamin C). I also use a probiotic called Lactobacillus Sporogenes; after a course of antibiotics.

I have had varied success with diets and supplements; some causing a dramatic impact on my headache frequency and pain levels. I was even able to continue working, without increasing my prescribed medication. However, since my IIH diagnosis and the debilitating symptoms; making it impossible to work, I have less money, so use a good quality multi-vitamin and prescribed vitamin D tablets,

Kinesiology and Cranio Sacral therapy:

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I have had great success with kinesiology as a complementary therapy. There are different methods of kinesiology used around the world; deriving from acu points in Chinese medicine. I have experienced applied kinesiology, which is complex, so its best left to the experts, in this demonstration: Please watch this YouTube video.

My first practitioner used muscle testing to determine possible migraine triggers. I have been tested for toxins, deficiencies and allergies and have then taken supplements or followed different diets from the findings. I had the most success with a dairy free diet. However, my therapist felt that there was a physical problem and referred me on to a cranial osteopath, who also practiced kinesiology.

Seeing this therapist was a pivotal point in moving forward in managing get my migraines. She asked my body questions (yes, really!!), to find out how to treat my symptoms, at that moment, on that day. My body is very sensitive and could be incredibly tricky and secretive! The cranial sacral therapy was amazing; I loved  having my skull gently realigned. Although, we soon discovered that too much pressure could be detrimental, but with the mixture of treatments worked so well. There was even a visible difference in my skin tone after treatment. She even felt that the cause of my pain and new symptoms, in 2014; were linked to the dura. This  is part of the meninges, which, amongst other things, carries blood to the brain,  it turns out that she was almost right. Please refer to earlier nformation about  IIH.

Aromatherapy:

I use essential oils to help with pain relief and to aid relaxation. There are many oils to aid symptoms of migraine and headaches. You can read more about this here. I tend to use clary sage, lavender and jasmine for pain; ginger or peppermint for nausea and frankincense and ylang ylang for relaxation and meditation aids. However, this is a matter of personal taste and suitability for use on you. I tend to use a diffuser or pop a few drops on a piece of material. I used to use them in a bath, when I had better mobility and I would recommend this or massage, as the best way to benefit from essential oils. It is helpful to switch oils every few days, so that the body doesn’t build up resistance. Please seek advice when  using these oils.

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There are other treatments I use for migraine. I love to use ice and there are a few hats/masks on the market, with ice packs sewn into them. I would highly recommend the migracap, which I used constantly before surgery for IIH. I am able to use these in between brain and skull surgeries for my IIH; when I have migraines. They work very well with feet in warm, peppermint oil water. I also use sea bands to prevent nausea on journeys and I cannot go anywhere without my ‘gig’ ear plugs and sunglasses. All of these help me to manage my pain levels and work well alongside my prescribed medication. I would highly recommend complementary therapies to anybody. As first and foremost, you need to be proactive in your own care. Always do your own research and check that the treatment is safe for you! 

Chronic Illness Bloggers

#Migraine and #Headache management is as much an art as it is science. #MHAM Day 1

#Migraine and #Headache management is as much an art as a science. http://poht.info/2qNtzdg #MHAM #MHAMSMC

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MHAM DAY 1:

Hi, welcome to day 1 of migraine and headache awareness month. As usual I will be blogging alongside my American migraine warrior peers. It is not MHAM here in the UK. We have just 1 week to raise awareness in September. However as I run @migrainemission; Mission Migraine awareness group’s Twitter feed, I like to join in to raise awareness as we have many US followers.

Migraine and Headache management is as much an art as a science.

Today has given me much food for thought and in the end, I have gone back to basics to get my head around this statement:

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If the approach to care for headache disorders was more scientific then there would surely be fewer cases of misdiagnosis and more appropriate treatment. According to WHO (World Health Organisation); Worldwide, 4 hours of training for headache disorders is given to undergraduates and only 10 hours to specialists. In my opinion, this doesn’t seem appropriate, when migraine, the most common headache disorder, is the third most common condition in the world. This must lead to misdiagnosis/no diagnosis. It is thought that 50% of headache sufferers are undiagnosed.

The Migraine Trust’s facts and figures

In my case, I was diagnosed with migraine at 32 years of age. This was after a year of being misdiagnosised with tooth infection, sinusitis and trigeminal neuralgia. I was finally diagnosed by a neurologist, after being transferred via ENT after seeing a Maxillofacial consultant! Yes I was confused by this point too! I struggled to take on board, that all the pain I had been suffering (which at that time was mainly right sided, around and behind my eye) was caused by a migraine. At this point, I had no understanding of migraine, that I didn’t understand why I had been diagnosed with this condition without scans. I was given a prescription and sent away; with no leaflets, no real treatment plan and certainly no understanding of migraine.

It took 5 years, before an MRI scan was ordered; when my migraines became chronic; I was suffering day in, day out; with no break from the pain. I was taking preventatives and rescue meds; to no avail. My MRI was clear and I was left with this diagnosis and refused further help, when I noticed new symptoms. These symptoms  have led to a further diagnosis of a second rare neurological disorder diagnosis-IIH.

There was science behind some of the treatments I was given, as you’d imagine. I was one of the first patients in the UK to start taking pregabilin (Lyrica). This is an anti-seizure medicine that also blocks nerve pain; Pregabilin uses and side effects as a migraine preventative,

I also tried triptans-the only medicine family developed specifically for migraine; in decades. These started with sumatriptan in the 1990s. Scientific research for migraine and headache disorders is low, with hardly any new medications being made. Compare this to the amount of sufferers; estimated at about 1 in 7 people. ??

Eventually, I saw a Headache specialist in 2014. I didn’t have high hopes as, by then, I knew that my GP probably knew nearly as much as her! However, she did know which questions to ask me and how to get a detailed medical history; this is where the art comes. She knew to ask about my health as a child. Nobody before her had made any link. She asked if I’d had a lot off time off of school, yes. She asked if I’d had lots of tummy aches, No. Not every question was right, but each question led her to join up all the dots. She realised that I’d had headaches from puberty. You can read more about this in ‘The My Story So Far’; in the ‘Inspiration tab!

However, her advice was not to have chocolate, cheese, caffeine, alcohol or late nights…the standard advice. She gave me information that you can find out within 5 minutes on the Internet and much of it was wrong. For me, chocolate has no impact on my migraines and I hadn’t had caffeine, alcohol or dairy for years. Would you tell a sleep deprived friend with constant, unbearable pain, who is so frustrated with the system; to have regular bedtimes. I had stopped listening at ‘no chocolate’? I knew her science was not right! She didn’t listen to my thoughts and feelings and made me feel like I was being difficult, at times. And, she certainly had no consideration of my needs when she refused to treat me, if I continued to be seen by the team treating my new neurological disorder. She disagreed with them, as her facts about the latest medical knowledge was limited. Those 10 hours of training did show up then!

READ THE MEME BELOW CAREFULLY! ‘CAN BE MIGRAINE TRIGGERS:

Headache disorders+patient=unique triggers.

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In my opinion: The art in the science, is knowing what questions will help lead you to a diagnosis. The science in the art is having the correct background knowledge to ask the right questions, give the patient the correct advice and the art of it all is to know the patient’s/your own needs; acknowledge and then act on them!

In the words of this study: “You have to ask the right questions in a manner that will elicit information which will lead you to the right diagnosis. Headache patients are in pain, are often depressed and sometimes frustrated because so many earlier treatments have failed. When you evaluate such a patient, you therefore need to first establish a rapport and then ask the right questions based on the right suspicions. You need to improvise as you go along, based on the information obtained and this has to be done in the right sequence.”Read the full review here

I am lucky in a sense, I have found a specialist team to treat the rare disorder and my own knowledge and that of my GP is as good as any headache specialist that is available locally to me! At the end of the day, it’s the trust I have in my doctors and their knowledge of the science behind my treatment plan, their art of being able to talk to me without patronising me or making me feel like I’m making a fuss! And it’s the art of knowing my own symptoms, triggers and medication needs to manage the pain that brings it all together!

Laura

 

Chronic Illness Bloggers

Chronic Illness Bloggers #ChronicBlogs

I’m just hopping on quickly today as I have an announcement to make.

I am feeling very proud because I have just been accepted to join the Chronic Illness Bloggers Network. You will now see this logo on every post; to show how proud I am.

Chronic Illness Bloggers

This is also means that you will be hearing more from me, as I realised last week that I really want to connect with more people. Those with chronic illnesses, Carers, family and friends of those with chronic illness and promote how a positive mindset can help get through both the good and bad times.

I also feel the need to write more for my own mental health. I will be writing shorter posts, more often (well, that’s the plan) and I will hopefully be featured on the public Facebook page for the network. I will also get the chance to learn from other bloggers and continue to develop my writing. So I would love you to like this page and find out more about how those of us with chronic illnesses get through life with many challenges. You can like the page by clicking this link Chronic Illness Bloggers.

Thank you all for your continued support and I hope you can enjoy more of my writing. If you haven’t already, then please like my Twitter page Happyiihgirl and my Facebook page Tears of strength to help me continue to grow my audience.

Laura

 

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 doing this alongside Karen Thomas; my close friend and founder of Conscious Crafties is so helpful. We can remind each other. 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 (and decided to keep this image in my stored photo favourites! 

  • 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. 
  • Karen has helped me with the ‘positives’ daily ‘ post. This is now put up by other Crafties in our community group (private for paid up Crafties, but an amazing safe place filled with kindness for others) but I do try and join in every day. I am so pleased that my idea has been embraced by many of the group’s members. 
  • 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. 
  • Try to continue to post positive comments daily in the Crafties community
  • 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

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.

#Spoonielife 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 or use our spoons wisely. The spoon theory explains this much better than I can. 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.