About Laura

Introduction

Laura is a former primary school teacher, blogger, poet and jeweller living in Sussex UK. She is a positive thinking, mum of 2 teenage boys and is happily married to Joel. Laura is an IIHer, chronic migraineur, patient advocate and mental health campaigner.

After developing a debilitating brain condition, IIH, in 2014; she sadly had to give up her 14½ year teaching career. Soon after being diagnosed, she turned her life long love of writing into this blog to document her journey with chronic illnesses. This evolved into raising awareness of disabilities, chronic illnesses and mental health.

Laura runs the Mission Migraine Twitter account, which raises awareness that migraine is much more than just a headache. Laura started her own business Paprika Jewellery & Accessories after starting to make jewellery as a distraction from the pain.

She writes poetry to explore her own mental health and well-being. Laura writes about positive thinking and living her best life, despite her conditions. She hopes to inspire others to find their own sense of purpose, whatever challenges they face.

Life as a bed-bound workaholic. #chronicillness

Stopping work due to ill health usually leads to a feeling of loss and purpose. For workaholics, giving up a career just adds to the grief of a previous life. If you’re also mostly bed bound; it’s almost impossible to give in.

On being a workaholic 

I’d wanted to teach from age 5 and I loved it from the moment I stepped in the classroom. I was a workaholic, working nights and weekends, to try to make a difference.

Teaching is so much more than a job, you never stop thinking about some aspect and with you take on many roles.

When I had my boys I worked part time, but was still working a 40-50 hour week. A workaholic is compelled to keep working and creates a life that’s out of balance. Read more here. Being a mum always came first, but I always felt the need to be doing something. Just a workaholic in another role; feeling like I couldn’t do either role justice. In hindsight; I know I gave both roles everything I could.

Becoming Bed-Bound

If you’ve read my story, you’ll know I had to stop teaching when I became ill. When we came to the mutual decision that I should be medically dismissed, I knew it was best for everyone. However, I struggled with the reality of having to bow out, from my bed, with no farewell, after the 14+ years I’d dedicated to my profession. I still wish I’d done more, but I’m proud of all that I achieved and that I had some influence on so many little lives.

We realised that becoming bedbound had a silver lining. I could now just enjoy the most important job I had and put everything I could into motherhood, without throwing life out of balance! We love that I’m more present and less stressed. Now I love hearing the key in the lock, anticipating my boys coming to see me.

However, as a workaholic, even a bed-bound one with brain disease, I still needed to be DOING something. So I began making jewellery and soon discovered Conscious Crafties Marketplace The site was set up to give those with chronic illness, disabilites or their carers a sense of purpose again. You’ll find this statement on the site’s homepage.

‘A community of talented artists and crafters who are living a purposeful life by changing the way humanity perceives those living with Chronic Illness, Disabilities or Carers of those affected’

This amazing community has helped me connect with others who understand what we’re going through. I’ve made many true friends and am living a purposeful life. But, I’m a busy minded person and so volunteered to help Karen (the founder) run the site. Everyone tells me I do too much, but I thrive on helping others and love organising things. But I was juggling all of this and more, from bed, and it was beginning to impact on our family time, so something had to change!

Breaking Free

Making the best of family time

I needed to break some of the bad habits I’ve developed over years of being a workaholic. But I have the best motivation; to bring balance in to my life. I’ve looked at my behaviour patterns and found I was spending far too much time on social media. I’m now slowly re-training my brain to know that it’s okay to rest!

Josie from Worry Free told me that ‘My JOB is to heal. By giving me a role/job of healing and rest, I have that all important role we crave and am now a resting workaholic! Such a simple idea, but so effective; I’m already breaking bad habits,  doing less and achieving more. Ultimately I’ll have more quality time to spend with my family.

 

Self care: Are chronic illness warriors good at looking after themselves?

Are you a chronic illness warrior?

By that, I mean, are you the kind of person who:

• Is an advocate for or is a fundraiser for a charity supporting your illness
• Works or runs a business, even if it makes your symptoms worse
• Has lists of things to do or achieve because you want everything done now
• Is there for your friends who need support even on your worst days
• Struggles to accept help-even not taking a medicine that helps your symptoms
• Says ‘I’m fine’ when friends/family ask how you are, even when you feel awful
• Has to be busy doing things that aren’t important; rather than prioritising
• Doesn’t plan in any time to rest or even just sit still; let alone meditate

If you answered yes to some of these then read on:

We certainly need advocates for all chronic illnesses and doing most of these things likely makes you an inspiration to others. However, where do you come in your list of priorities? Your choice to raise awareness for others with chronic illnesses is awesome, but if you don’t make yourself a priority; you’re no good to anyone else.

The bullet points above are the opposite behaviours to those in this diagram. I could have added many more examples, but I based it mostly on my own behaviours. In this blog post I’ll discuss my experiences, my understanding of ‘self care’ and the steps I’ve taken to try and put myself first.

Until last year I don’t think I’d really heard the term ‘self care’, now it’s fairly prevalent. I didn’t practice self care and I admit that I still revert to old behaviours occasionally. When I fell ill, my self worth plummeted and when I had to leave my teaching career; I fully lost any sense of purpose. I love helping others and raising awareness. Once I even raised money for 2 charities in the same month!

After 3 years of everyone saying that I was putting too much pressure on myself; I began to realise my self care was pretty nonexistent. Considering the severity of my symptoms; I knew this wasnt good. I was making my symptoms worse and my mental health was suffering too. You can read about a day in my life here.

About a year ago, I joined a closed Facebook group at the recommendation of a friend. This was for women who ran their own businesses; started by an amazing lady who is a coach and hypnotherapist. This is Josie’s website. She sets a theme most weeks and then does a live session discussing aspects of that theme, such as; what we do to have fun or about asking for support.

She ran a course for us to choose one thing we wanted to achieve in 2017. I started, thinking this would be about my jewellery business. However, I soon realised that everything seemed to be pointing towards choosing ‘being kind to myself’. This was the first time I truly contemplated the cost of my actions. I suddenly saw that by being kind to others, pushing myself with my business and trying to prove I was still independent; was not only bad for my health, but was affecting my self worth.

So, I set my 2017 goal as ‘being kind to myself’, which you can read about here. I underpinned this with the steps I needed to take to reach this goal and even thought about who I needed to help me achieve this. I set up a Pinterest board with related quotes and some feedback from customers. I don’t set New Year’s resolutions, but having this structured goal, was much easier for me to follow. I wrote my goals out and kept the image in my favourites on my iPhone, so I could refer to it often.

 

• I started a diary and only wrote 2 activities a day, so that if a friend was visiting, I only wrote one activity for my business/blog/supporting others.
• It took a while to add rest times as standard, as I already meditated. I lost my way a few months ago though, so now I write in time for meditation every day.
• I let my friends support me and a rota of lovelies now put up the positives post in our Conscious Crafties (CC) support group. It’s one thing less on my to do list, but I still write my positives on it, so keep the positive interaction with others,
• I’ve continued to build on my Pinterest board throughout the year although I needed a bit of a boost about a month ago, but am now back on track.
• The step I’ve found most difficult is resting on bad days, let alone making this the time to focus on my achievements and ways to continue my self care,

About a month ago, I realised I needed a boost to get me back on track for my goal. I still benefit massively from Josie’s group but I joined in with a group I’d been added to; run by the Anne-Louise. You can find out more about her here. She’d just started a 26 day challenge about improving self worth. This was exactly what I needed, at exactly the right time. I even received a free support call a few weeks ago. This call and the 26 day challenge has kickstarted me back into thinking about self care.

I have now added these elements to my self care regime:

• setting aside regular time to engage in positive interactions with my husband Joel, my boys and my friends.
• starting a journal to record the gems of knowledge from the amazing ladies who run these groups, who are generous enough to share their message.
• writing a ‘self care’ to do list as I process what has been said.
• writing at least 3 positives each day in my journal, so that I can reflect on my day and revisit my achievements and good feelings on those bad health days.
• using affirmations to increase my self worth. These are short, positive, statements that you repeat out loud to yourself or write down repeatedly. For example: ‘I’ve got this’ or ‘I am beautiful’. This is still quite new to me and at first I could only say them in my head. The aim is to say them in the mirror.
• doing my physio exercises every day that I can. I’m adding in gentle yoga and Pilates techniques I already know, to improve my core and help me lose weight.

I haven’t updated you since my last operation, but it has given me some relief from most of my symptoms. I’ve managed to do more and have reduced my oramorph. Sadly, It’s been harder than I hoped to get over the school holidays  (I knew I was doing a lot, but accepted there would be consequences). Frustratingly, I’m now a week in to a chest infection, but instead of waiting it out, I spoke to my GP when I first experienced symptoms; so this work I’ve been doing is sinking in, finally!

The results from my operation give me hope and I’m starting to plan for a future of less pain. I’m considering carefully how to merge Paprika Jewellery & Accessories  and my passion for helping others. I have lots of ideas depending on how my health improves. I still have lots to learn about self care, but I know my priority must be looking after myself, so that I can give the best of myself to those I want to help.

Are you a chronic illness warrior? If so I’d love to hear your thoughts about this.

Are you able to ask for support?  Can you prioritise self care above all the amazing things you do?  Do you engage in positive interactions with others?

What could you do to address the balance between being a chronic illness warrior and practicing self care?

 

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.

#Medication mayhem #Opioids, research & constant controversery!

I make jokes with friends about the amount of medication I take. I probably shouldn’t.They can’t believe I can talk, let alone write. However, this takes me 4/5 times longer than it would have done before I took opiates. A controversial subject; in my own mind, between my doctors and in the wider world. This blog, however, is all my own opinion. 

I take so much medication that the ladies in the local chemist ask after me and the hospital pharmacist got so excited when she saw my list; we thought she might pee herself! It’s almost as if they see a receipt full of BOGOFs (the latest repeat slip was over 3 pages😳). However, my next neuro appointment could be complete mayhem. When she sees M.S.T (CONTROLLED DRUG🔐) a.k.a morphine sulphate added, when I was meant to be coming off of the oramorph😬…. I can already see the horrorified glare; feel that disappointment. But at least now I can now brush my teeth without crying. 

Or is it? Although morphine controls my pain better than, say, removing my brain (I think I’ve tried everything else); I repeatedly discuss my concerns with my GP, but he just trusts my judgement. Despite jokes of lining my oramorph dosed measuring cup up alongside the sloe gin shots at Christmas (it’s fine, I followed instructions); when it actually comes to taking a dose; I wait, wait and wait some more, until I can barely move my head. I detest the damage to my body now and have an imperceptible fear of future repercussions. I’ve abstained many times, for many reasons. Each time though, I have the same choice to make: avoid controversy,  lie still all day; doing nothing or accept pain relief and the layers of guilt. Of course I eventually choose option two. Relief to spend brief amounts of timie with loved ones, or crafting; both a distraction from pain and a protective layer of self-worth, to try and avoid the clutches of the black dog(depression).
After my venoplasty procedure (a neuroradiologist guides a catheter by X-ray through a vein in the groin into the brain, then inflates a balloon to widen the vein; increasing blood flow), I felt immediate impact and in the following days; was relieved of all my symptoms. This was my opportunity to prove that I wasn’t addicted or suffering medication overuse headaches. My last dose was that morning, a 3 hr journey to do, and i had none in the following days. I did suffer rebound headaches, but they felt so different to the pain I was used to. I could now be sure that I only took oramorph for extreme pain and that I could differentiate any rebound pain from IH pain. Sadly, my symptoms returned after 5 days and were back to normal by 9 or 10 days as the vein deflated; I unwillingly restarted taking oramorph. 

In the US this subject is highly controversial right now; there is a heated debate on social media (and possibly elsewhere) over using opiates to treat patients with chronic non-cancer pain. Many drs are expressing their concern about how they can be sure to only diagnose patients who will not abuse the drug. (Obviously dr’s around the world do the same)  There are extensive forms doctors complete to ensure there’s been no history of drug addiction etc. The unease surrounding opiates are that they have a high dependency rate, can cause depression, respiratory problems and many other side effects.

So, have I been able to tackle my medication mayhem? 

The styloidectomy has worked but, no I’ve not really benefitted, although, there was initial pain relief. The ability to test it has been hampered by my new diagnosis of an under active thyroid and anaemia that has caused havoc; weeks of tracheitis hanging around. It’s like a science experiment gone wrong! Morphine gives me a foggy brain but I’m also ingesting many other meds that cause drowsiness. Here is a snippet of my medication list; these being ones that carry that warning label! 

• Amitriptyline 100mg
• Pregabilin/Lyrica 175mg x2 am and pm 
• Topirimate 75mg x2 am and pm 
• M.S.T/ morphine sulphate x2 am and pm 
• Diazepam/Valium 4mg x3 am noon and pm 
• Oramorph/ Oral morphine 5ml/10mg up to 4x a day as needed 
• Diazepam 5mg 1 or 2 to be taken as needed

The top three are preventative medications, the rest are for pain relief. During the day, I sleep a lot; my PA has to wake me up after she arrives, just gone 11.30! She sorts all of my meds out into morning, day and evening pots for the week. I have to set alarms to take them and then alarms to remind me that I’d had an alarm. Then she or Joel have to check on me too! 

New laws regarding drug driving (prescribed meds) were introduced in the UK in March this year and as Diazepam is one of the newly restricted drugs I’ve shared this. It may help someone even though I’m too unwell to drive. I would always recommend that if you have taken any medication that ‘suggests’ that you don’t drive, even if not on this list,that you find someone else to get you home safely. You can still be prosecuted. You could still be too slow on those brakes! Drug Driving 

I started this post after reading this article Lyrica/Pregabilin or Neurontin and the effects on the brain. This is one of the first medications I tried after being diagnosed with chronic migraine, 7 years ago. My neuro prescribed it as a brand new drug in the UK. There was research to license the drug but it was developed for treating epilepsy. My GP struggled to find information on it. Like most migraine preventatives, it was an epilepsy drug with positive effects on patients with neuropathic pain. It worked for me! I now know for sure that this drug helps to relieve some of my pain. After a trial period without it, during the first year that I was chronically ill and undiagnosed, we tried so many things; this was a drug that helped!  Now there has been more research and there have been many articles posted in social media recently. Now I have to decide if the relief I need now is more vital than the possibility of early onset brain issues. It’s ironic that amongst more controversy, I seem to bounce from one dr’s door to another. I have to discuss this issue with my GP, don’t I? 

What would you do? I’d love to hear what you’d do? Are you taking opiates and how does it affect you? Are there other prescribed medications that cause you controversial decisions? Do we care for the here and now and possibly stop our life’s becoming so unbearable that it wouldn’t matter about the future anyway? 

Life, friendships and adventures of a pain warrior

 

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

My Life

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

My Adventures

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

My Friendships

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

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

 

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

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

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

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

    
 

      

Am I being lazy? Questioning yourself through #chronicillness

I’ve been having an internal fight as I come up to the 5 month anniversary of becoming bed-bound.Am I just being lazy now? Has this become a habit? Do I just need a kick up the backside? Or have I simply lost my fight that I had prided myself on! I just can’t get out of bed! However hard I try, it just isn’t happening. I can shower but then I need to go back to bed etc. It’s got to change as I have to make a parent,s evening soon…bleurgh! I’ve no idea how to be honest! But I know I will do it! 

   

Now, let’s be totally honest; I’ve had a handful of days that I’ve made it down those stairs but hey…Namely: Christmas, New Year, hospital (for my operation) and my son’s birthday. Wouldn’t anyone have pushed through the pain for an hour or two for that? 

Most recently I dragged myself down stairs to see their excited little faces for Mother’s Day, here in the UK last Sunday (6th March 2016). I really didn’t feel good, I’d only had a really short morning nap due to the change of routine. I was desperate to make it downstairs after being spoilt with flowers and chocolates. I knew that they had chosen a special dinner for me, so we could celebrate at home; as we couldn’t go out. Zeke, my eldest at 12, told me more than once that I didn’t have to; that we’d all eat in the bedroom, but I knew they longed for me to make it downstairs! The more he told me it didn’t matter, the more I knew it really did! So I did it. I pushed myself down those dreaded stairs, headed straight for the sofa (with my walker going faster in my head than in real life) helped to get to the lounge; as our beautiful old house, with steps, just isn’t designed for a disabled person. 

So, there I was sat on the sofa, finally comfortable, the three of us chose a movie to watch, whilst Joel finished preparing lunch!  We chose ‘Enchanted’ and I was pleased as I’ve wanted to see it. Then, whilst the story got going, I called them over for a selfie (we couldn’t get a good one) but after too many fingers and thumbs..Joel started bringing in our first course; tiny cups of pea soup! So to solve the….. ‘quick, mum is downstairs selfie problem, ..Joel took it! If you look carefully, you can see that I look a picture of health!!! 😂

  Then we settled down and the film started revving up the singing, the dishwasher had already been turned off because I thought someone was playing drum and bass. Then the spoons started banging the cups and the heater was whirring like an oversized electric fan (it’s tiny) and the movie was frenetic with cats beeping and people and noise as she arrives in New York and then the waves started coming. That feeling I know too well, fight or flight. I can’t fight all the noise and I can’t run away (did you read I have a walker a.k.a Zimmer frame) and I feel tears welling up and then running down my cheeks and pooling into my scar on my neck. And I don’t know why. I can’t answer when Joel asks why I’m crying. Then he stops and thinks an realises that it’s the film. It’s just the tipping point of too much noise. And no one was that interested anyway. He asks what I might like to watch. I look at him and then, Luca my 10 year old who loves watching cooking programmes with me and I say….Mary Berry. Please can we watch Mary Berry! And then everything is so….much…calmer.

So this is the joy of hyperacusis and I haven’t had it as bad as that for a while; especially the dishwasher beats. Haha! 

Find out more about hyperacusis here

Pushing myself that hard, led to another symptom I haven’t had for a while. It returned that night just before bed. Whilst trying to walk from the bed to our en-suite (6 paces), I lost my balance and tried to land on to the bed to break the fall . It didn’t work, I fell down the side of the metal frame of the bed. once on only my coccyx; then again, followed by my whole spine. One vertebrae at a time. I also jarred the right side of my neck, where my nerves are still healing after the operation. It wasn’t much fun. Joel had to help me into bed and I spend the next few days with a hot water bottle, feeling sorry and sore. However, this spurred me on to phone my GP and tell him about falling and how I feel so, so, exhausted; seemingly more so than really thought I should. He arranged for the district nurse to visit me and then he rang the day after she’d been 😳….just after I’d fallen again! This time, on top of Nina, my amazing PA (carer), and friend, who is now getting used to this happening. (Where are those health & safety elves)? Don’t worry, she’s fine and it’s going to be an addition to the risk assessment. (Ideas for wording; greatly received)! My GP wanted to inform me that I have a low iron count, making me anaemic. Well, I’ve been anaemic before so I felt ok about this. We think it may be due to me dropping my appetite since starting topirimate but not directly because of the medications I’m on. The second piece of news is a bit more to take on board, I have low TH something or other and therefore have hypothyroidism. Apparently it’s common in women my age and with people who have a chronic illness so, I’m absolutely over the moon that it turns out that there is actually a reason for all this fatigue and exhaustion.

  

As it turns out then,  I’m not lazy after all. There is a reason why I can’t keep my eyes open. Why I’ve deleted this sentence about seven times. Why I have added 10 lines of m twice. However, whilst I try and regulate my body I’m going to give myself some headspace and stay away from Facebook. Now to spend precious time with my wonderful close friends and family. Our minds can play naughty tricks with us when we are chronically sick. I think we are often left feeling guilty (as discussed a post or two ago) and people who haven’t experienced anything like this; perplexed, as friends lose interest as we cancel yet again and maybe for some people even relationships break down. I’ve been lucky here but many aren’t. 

Just take all the time you need to process each new diagnosis or development. Even little ones like these for me, that can be treated with pills from the GP ,can knock the stuffing from your world. I have just needed a good old chat and a little cry so far, but have counselling if you need it, or ask your GP to refer you for CBT. I’ve had counselling over the phone, as when I tried going to see one counsellor, the journey and talking was roo much for me and I ended up in bed recovering for a week (that was when I was still fairly mobile). We’re all different and each situation is different so you need to judge it but I’d say that the grieving process you go through with chronic illness is not one to be ignored. However, there is no time pressurre on you, you alone truly know what YOU need. The most important thing is a healthy mind so give yourself: patience, love, understanding, strength and peace. Once you can give that to yourself then you will be able to accept it from and offer it to others. Be your own advocate always; no one else will fight your battles. You are a warrior. Stand proud. (When you’re not falling down ;-))

So for a while, lovely friends and supporters, I will take strength in knowing that you care enough to read my writing. Any messages (always welcome), I will pick up as I do love your messages. Thanks again for all your support and kind and caring words. They do mean so much! I will pop by but may not be as quick to respond as normal. Things will be quieter for a while whilst I focus on me, my best friend and my best boys. X

  
 

My 2 year anniversary and my forever attempt (fail) to explain to others…I could have (~~~) successful surgeries but still never make a full recovery. #Ihaveiih

Ask anyone with Chronic illness when they are going to get better and you are going to get daggers! Whether you notice them or not is another matter. In this post I am going to attempt (not to fail) to help you understand what having a ‘chronic’ illness means to me; why surgical options may still not be the final answer for me and what my hope for the future is. It’s your job to try and really take in what I’m writing about and digest it thoroughly,. I’m asking you not to skim read and then comment with a ‘you’re so brave, or you’re going to be fine or worst of all: ‘wishing you a speedy recovery’!! But, in the long run, all I can control is what I write….

I have Chronic Migraine (CM). ‘Chronic’ means that I’m never going to get better from it. The definition in the UK for having chronic migraines is to have them on 15 days a month or more.  I will probably always suffer with migraines and I have found out relatively recently, that I have suffered with them since I was about 12; having spells of CM that were misdiagnosed. Then it all stopped. At about 19, I stopped drinking and changed my diet. I didn’t know I had migraines; at this point in my life. I had been diagnosed by a nutritionist as being hypoglycaemic. The diet kind of worked, but made for a very boring Fresher’s week when I started University and I became the sensible housemate (sort of-I didn’t really need a drink, truth be told) 😜 So here I was back together. Laura. And it was here at Uni that I met Joel. I had occasional attacks still, so I was slightly ragged around the edges. Joel and I needed a little help from our friends to get together but once we started our journey  there was no stopping us. We moved in together, bought a flat, got married and had our two lovely boys.

And then one day, 7 years ago, after a visit to the dentist, when the boys were young, it all fell apart again. This time, we tried antibiotics for a range of diagnoses and eventually I was diagnosed with migraines and started on preventatives. I wasn’t satisfied with my treatment as I still suffered, so I tried all sorts of vitamins, special diets, different therapists etc. I mostly worked through it, just taking time off when the first bout was undiagnosed and then a few times when it worsened and I needed to increase/change the preventative. I was managing to work with a pain level of 2-4  most days and I feel that I owe that mostly to my fortnightly visits to a cranial osteopath.Let-down migraines took me away from my family for half the weekend anyway but we didn’t know how to get off of the merry-go-round. However, my point is..

I’m still trying to put myself back together. I still have CM but now I have IIH as well; another chronic illness. Two years ago,  a migraine attack started that just didn’t let up. In February, I started getting pulsatile tinnitus (PT) and that’s when I knew that this time, it was different. I had a big battle with doctors but luckily a supportive GP. Mr A’s speciality is in PT and that is how I found him. If I hadn’t done that then I would still be being treated, unsuccessfully, for migraine. It was eventually diagnosed as a intracranial venous outflow restricton and a lumbar puncture confirmed that I did have slightly raised amounts of Cerebral Spinal Fluid, putting me on the border line of having IIH. It’s a bit of a puzzle as to why my lumbar puncture results were really quite so low, when my symptoms (not papilledema) are so severe (mostly bedbound through pain, in a wheelchair if we ever do leave the house). Now I have TWO diseases that I will never ‘GET BETTER/WELL’ from. So, as I start this blog a week after my first surgery for IIH, starting to put myself together again; I want to try and help people understand, that even if my surgeries are successful (I can’t even let myself dream it) I will still always have IIH! However, there is a chance that I might be lucky enough to go into remission and not experience any of the symptoms! If this does happen, I would still always have to watch out for any symptoms recurring.

It is 9 days since my operation and I have been wondering why it is, that when I talk about it, people seem to assume that I am going to get my old life back again? A life free of pain, where walking is as easy as talking and waking every morning, is pain free. Wow, what an amazing dream; it’s been so long I can’tremember what not being in pain feels like now. It is only a dream though. Just going through the process of being this unwell has changed me as a person! I’ll never go back to being who I was 2 years ago, but I am enjoying being more ‘like myself’ again. My close friends and family that have visited have all noticed this in me. It’s a lovely thing to hear.

But something that I don’t understand is that some people are asking me already if the pain has gone?😳 It’s days after I’ve come home from hospital; days after a surgeon has hacked into my skull and removed 2-3cm of it (not that you’d know it from the 12-15cm scar)! How could that one operation, somehow fix everything that is wrong with the wiring in my brain? Yes, I have one of the top otologists (Mr A) in the country trying to sort out my ear and skull and an immensely experienced neuroradiologist (Dr H), who has imaged every vein in my brain. Dr H is in charge of fitting my stent(s) to open up the veins so that the blood can flow out of the brain. However, since they’ve carried out all the imaging of my brain, they are concerned that there are so many narrowings in my ‘tortuous’ brain. Don’t get me wrong, my Consultants and their Drs are the most amazing team of surgeons I’ve ever met, but they can only work with what they’ve got!  However much I’ve written this, it still seems to be, that some people think I’m on my way to a cure. I hope I’m making it clearer now!

So, the plan is for me to recover from the styloidectomy, which seems to be going well; my pain level are dramativally reduced in the daytime (of course I’m still on morphine), I’ve no dizziness or nausea and the brain fog is much better. I’m keeping a daily log of symptoms and then have a review with Mr A in 5 weeks then hopefully they will decide to insert this large stent in my jugular vein, where they’ve made room for it! After my first CT scan, the team had wanted to perform a  jugular foramen decompression (drilling holes to relieve pressure in a larger area of the skull; a 4 hour op)! However, these are deemed as unnecessary risks and are now not performed at Addenbrookes hospital and won’t be for the foreseeable future. So, to sum up how I feeI; I am hopeful that it may well be possible for me to live with lower pain on a constant basis and I still hope that my mobility will improve, but I’ve seen no evidence of this yet. My worries are that if I still have areas in the skull that they thought needed surgery; that now cannot be done; will they be able to fit enough stents for me to make a FULL recovery from all of my symptoms and what will happen to my migraine condition once my IIH is more controlled? I will also probably always have some form of migraine condition. Luckily, I feel that I can, at some point, discuss this with one of my many doctors.

So, there is progress and I have to try and believe I can get better whilst being told that none of the treatments are guaranteed to work. However, now I’ve had this operation the stakes of the stent working must have improved. I just don’t know though until I talk to Mr A in 5 weeks time. In the meantime, I have loads of people saying to me ‘when you get better you can,…. , and I sometimes even find myself saying it, but the thing is, I just can’t think like that, even though my GP seems to be a bit optimistic as to my prospects at getting to be up and about and possibly maybe even back at work in a couple of months! I don’t mean to sound like I don’t have faith in this process, I’ve made it clear that I do; I’m just being realistic not defeatist. It could take me years to get all the stents I need fitted. Even if I only need one, which would be amazing, I will still need rehabilitation. This fight is one full of the need for patience and time.

Finally, I want to say thank you to everyone who has taken the time to read my blogs and try and understand my situation. I can only thank you for trying. No one (even another iih patient) could understand my journey fully. I’ve waited 2 years for this phase to start and I’m incredibly grateful for every well wisher, please don’t misunderstand my words. However, I’d really appreciate not hearing that ‘I’ll be back to my old self soon’ or even that you ‘hope I’ll be pain free very soon’. Those things are REALLY UNLIKELY to happen. I appreciate the sentiment behind everyone’s words of encouragement; I’d just love it if you wished me happy times with my family; noticing that I’m more lucid, wishing me less/lower pain or just that you wish us peace and light on our journey. Thank you again for all your ongoing reassurance. I really couldn’t do this without your support and guidance through these hard times. I hope I’ve managed to explain to you that I am extremely unlikely to make a full recovery but that with your encouragement; I know a better future is on the horizon!

Lots of love to all, Laura x

THE #operation: How it’s only the beginning and that more operations are highly likely. Alternately titled #IIH and the #styloidectomy.

(Warning for the squeamish: this blog does include image of wound/scar)
It’s pretty scary stuff knowing they’re operating there. Yes there, in your skull; removing a piece of the actual skull. Scientifically a piece of bone called the styloid process, hence the name styloidectomy. The styloid process is a bone on the outside edges of the skull that is small and can actually move without it causing any problems, however, often this movement can be the part of the problems for a small number of people. Many of these people have ended up under the care of my consultants, who look at things a bit differently than the rest of the world! They look at the benefits that the patients identify verbally, as well as the numbers after the initial tests for IIH. (See previous posts) here

In my case, my LP opening pressure was relatively low but I instantly felt better and that continued for 5 days. When I had venoplasty the same thing happened. They can see from my scans that my intracranial veins are tortuous and I have many areas of compression. My styloid process had my jugular vein and some nerves  wrapped around it. Perfect for a really nice game of operation! 

  
 

(They really did have buzzers to warn them if they touched my nerves-⬆️⬇️⬅️➡️🔔🔕)! 😭😭 

  
 

The purpose of the styloidectomy is so that they can fit a large stent into my jugular vein in that area and now into the gap left by the removal of the bone. The diagram shows where that bone is so that you can picture it. Mr A has removed most of that bone, as you can see, it’s quite easy to get to; sticking down like that! He only took about 45 minutes to remove it. However, I can assure you that the hole he needed to make to get to that bone was much LARGER and I have a massive scar to prove it. 

  

Immediately after surgery I was in less pain (I guess I still had GA coursing through my veins), but I was put on reduced pain meds by a junior doctor who had different ideas to the anaesthetist and Mr A who were both happy for me to stay on my high doses of prescribed pain relief. Anyway, he also hadn’t signed off for me to have my morphine either that night! Grrr!! Amazingly, I managed on oramorph and slept most of the night and was woken at 6am by the nurse who had collared the dr and made him sign it off for me to have the morphine tablet with my other meds. After seeing Mr A at 7:20am!!!!!, the nurses removed the drain and cannula and discharged me without any dramas.

Next came the most surreal part of the experience; the journey home. Driving home and sleeping in the car was more bearable than I thought it would be, but we had to stop to use the facilities and get lunch. Joel wheeled me round to the disabled toilet- first we went down in the lift to the main loos as we were just trying to be quick, but they were on the main floor-so like a comedy act we went straight back up in the lift, in a daze. When we finally got to them, you needed a radar key to use them! This is the first time in my life, I’ve ever actually needed one! Once I actually got in the loo, I pulled down the rail and the panic alarm cord was wrapped around it; unreal! Quickly, Joel wheeled me out whilst we both giggled and I tried to cover my ears (that didn’t have my usual ear plugs in), so were fiercely objecting to the piercing buzzing! Finally I managed to actually go to the toilet, so Joel got me back to the car before I had a meltdown in the middle of Clacket Lane services! Needless to say, we ate lunch in the car. 

I’m so lucky to have my best friend to help me through every step of the way; not only major surgery but, to keep me laughing through it all; even toilet fiascos in a service station! 

  
Once home, I realised that the journey from the car to the stairs was a lot further than I’d managed so far; it felt like a trek to the South Pole! I was shaking all over when I got to my stool at the bottom of the stairs, but all I could think about was the fact that I still had to climb The Stair Mountain! Those stairs looked like impending doom, but all I wanted was my safe place; back in my bed! So here we were again;  this was going to be killer. I just knew. I prepared myself as best as I could. Oramorph and Joel to help me on my way (no migracaps allowed obviously) and I began the expedition. Oh. My. It was probably one of the worst climbs I’ve ever done. Every movement of my body hurt (my wound and my head) and having my head forward/down in crawl position was the worst position possible, but my legs were far too weak to even try to climb upright. I did however crawl as quickly as I could force myself to go, in between yelps. 

Finally I to came the realistion that I wasn’t going to be able to sleep on my side of the bed during my recovery. I usually sleep on the right, therefore my bedside table is on the right. But I can’t turn to the right to reach for things! So, once I’d recovered from the stair climb enough to pop to the loo, Joel moved all the pillows and then switched the bedside tables/cabinets. Now the left is where I will stay for my recovery. At the moment, all I can do is eat, sleep and watch TV. 
  

As you can imagine, I was absolutely exhausted by this point and slept all night and Saturday morning but by the afternoon I had started to be in more pain again. By. Sunday morning I was beginning to panic about detoxing at the same time as trying to heal from surgery-it just didn’t seem right. I asked on my FaceBook page and a couple of friends agreed with me and so did Joel. The consultants and my GP had all said that I’d stay on my medication cocktail and reduce it as I’m able to. I did feel torn because I wanted to stay off of the naproxen and I’m desperate to come off of morphine but I knew I had to stay on what I was on pre-op because the lower level of drugs just weren’t touching the pain and the pain from the op is generally lower than the pain I experience most days! Well, I guess it’s not that odd, this surgery wasn’t meant to fix ALL my pain and symptoms. It was primarily to make space for the stent. However, it can have an impact on symptoms which is why I’ve been asked to keep a symptom diary for a fortnight. 

Writing this has been tiring (although I have taken my time and done it in bits) but very cathartic and I think I needed to do this to get it all out of my system. I hope that it shows you why this isn’t going to fix everything, an insight into what it’s been like; as usual, the laughter and the tears and an understanding of what I’m going through at the moment. Thank you for reading and as always, Im sharing for understanding and awareness-not sympathy! 
  

#Morphine and #Christmas. What a combination!

So the last time I wrote a proper update I was telling you that I was giving in to the oramorph and having to accept that I needed to take it at regular times again. I was also talking about my midnight meltdowns and the struggle I was having keeping going both physically and mentally. Well, just about 10 days before Christmas I rang my GP and let him in on the secret that I had in fact not been out of bed in a week, out of the house in 2 weeks and that I was hardly sleeping. It was time to try something new and we both knew it. 

I knew before he even said it, that he was going to prescribe me morphine tablets. I had already had a brief conversation with my Occupational Health assigned doctor who had suggested it might be a better idea so I had had some time to get used to the idea. My GP is thinking of the use of this as a short term measure until I have my first (of unknown amounts of) operation in mid January. He decided to go straight in with 75mg am and again pm. So here I am; the girl who has been fighting taking morphine-on full time morphine and well, it initially immediately sorted the sleep issue!     

Well, so much has happened since I started this blog about 2 weeks ago! It was just after Christmas and I was going to tell you that I’d managed to spend all day downstairs on Christmas day and even made it down for a couple of hours the following couple of days. And of course, I couldn’t break our yearly Christmas Eve traditional get together with a few friends after the local church Carol service. (I slept on my friend’s sofa whilst they did that bit)! I’d had Tracheitis since just before Christmas Eve and was on antibiotics. Well I coped with that just about with a few oramorph top ups (yep-you heard that right)!! Can you believe how much of the stuff I’m actually taking now? I just have yo keep telling myself that it’s just short term and that these ops will mean I can get off the stuff! Do you want to know more about what morphine is like? It’s like I’m a tortoise wading through the tinsel and keep feeling the need to be naughty. It’s brought out my inner imp. If only I was well enough to use my impish ideas! 🐢🐢

So, morphine side effects are fun! As well as making you live your life on slow motion replay; morphine just makes me go to sleep. I can be talking one minute and asleep the next. On Boxing Day, when I was stil trying to pretend that I wasn’t in pain or suffering from the Tracheitis, I went off to play a game with the boys. They chose Yahtzee and once they’d organized it, it was new; they decided I should referee. Well, the game went well for about 10 minutes even though, I would be trying to tell them something and it would just come out as a slur and my eyes would be drooping. Then they started arguing over how to throw the dice and I couldn’t cope with it anymore. Joel had to come in and even though I was fighting it; forcing my way to the end of a sentence: I had to give in. I had to throw in the towel, pissed off with myself and my body for ruining Christmas and time with my kids,  and head back up to bed and go and sleep it off for a bit. It’s almost like the morphine is flowing through your body in waves and it just hits you out of nowhere so that you have to sleep; NOW! I have never been one to sleep in the day, let alone sleep in a car or on a sofa with people around me. Now I can just nod off at the drop of a hat! 

So where are we now on the 6th January, Epiphany; now that I’m finally trying to finish this blog post (it’s hard with so few spoons)? Before Christmas, I was being stubborn and not going to let it ruin our celebrations. I tried to do things that I find hard even on a fairly good day, let alone one when I’ve been in excruciating pain for weeks, just been put on constant morphine and have a respiratory tract infection. Well, after an hour or so visit from my parents and Nan the next day I finally crashed! The wrath of trying to ignore what my body was telling me had hit me. Again! 

And so, since December 27th at 3pm I’ve been in bed, in my bedroom and nowhere else! We have an en-suite, which is lucky because even the 6 paces to the loo have been exhausting. And my infection hasn’t gone of course so I’m on a stronger antibiotics, that come with RULES😳! I haven’t even managed to get on Facebook until a couple of days ago apart from the odd, quick look at the main event-no scrolling! Then on Sunday I started joining in again a bit more on Facebook; I had wanted to go downstairs but brushing my teeth had left me in agony because I’d only chosen to take 60mg of the morphine so I wouldn’t fall asleep on the boys but it meant I couldn’t go downstairs. Luckily, they came up to me instead and we all watched a movie in my bedroom instead! 

Since then I did manage a couple of hours downstairs with my eldest on his INSET day and we chilled watching some David Attenborough programme and playing some simple card games. It made both of our days. It did of course send me back to bed the next day with no spoons for a shower but it was worth it. My GP is phoning me this afternoon as I’m on my last dose of antibiotics today and still not good. I wonder what he’ll say? I’m so worried that it will affect my operation next week! I will try and post about my op as soon as I can afterwards. Anyway, I’m just about to go back to sleep now after my morning’s dose. I’m only taking 60mg every day now so that I’m not so sleepy. I still take the 75mg at night though because I still have pain at night despite all of that morphine, can you believe it? Fingers crossed that my operation next week will cut out the need for morphine completely. Wouldn’t that be great? That’s my aim. No New Year’s resolutions for me-just an aim to no longer need morphine.