Hey there, I’ve been asked by the production company, Firecrest Films, to share this flyer about the documentary they will be making. They are looking to cast contributors that have been diagnosed with migraine and would be interested in talking about their condition on TV.
Please follow the instructions given and if you have any questions please let me know.
Writing this blog allows me to raise a spotlight on the fundamental aspects of my Infinite Dreams Collection. It’s not all about jewellery designs so I wanted to share with you how the poem and designs linked to self care and acts of kindness. As I considered my core beliefs for my loyal customers and supporters it developed into this…
Having chronic illnesses affects everything, especially my relationship with Joel and the boys; which has only become stronger. The boys, Joel and the rest of my support network inspired the poem and the designs.
As I thought about my own experiences with chronic illness and mental health, I realised I had an insight into how many of my customers were part of other’s support networks. So many are either looking out for someone with chronic illness or someone who deserves a boost.
My love of helping others meant I was able to create a range dedicated to gift giving and valuing self care. An infinity range was the ideal choice for launching my new look shop aimed at care givers/friends of and those with mental health and/or chronic illnesses.
My very first collection had been on my mind for a while so when I needed time out for 3 major surgeries last year, it gave me time to consider the purpose of Paprika Jewellery & Accessories. I wanted to take it to the next level. I used my time out to train in everything handmade business related and I learnt so much!
Becoming chronically ill has encouraged me to dream and I’ve worked hard to turn those dreams into reality. Chronic illness has enabled me to build even tighter knit relationships with my boys and a much deeper connection with my husband. They keep me grounded and empower me to to be the best I can and to live the best life I can.
They’ve encouraged me to keep going even when the battles I’ve faced have been beyond tough. They’ve helped me believe in myself again and to use my limited energy to keep pushing towards my dreams; when many would want to give up. Their support has made me feel less guilt about choosing to only give my time to true friends.
When I decided to make a jewellery gift for one of my true friends after about 9 months of time out for 3 major surgeries, I had a moment. I was drawn to using an infinity charm in the necklace I was making for her and the phrase ‘Infinite Dreams’ came to me. I knew this was a sign and that simple necklace inspired me to create more using this idea.
I began to explore what the idea of infinity meant to me and why that charm was so perfect for my friend. When I look at her, I see strength, loyalty, honesty and empowerment. This lady is a fierce warrior with a chronic illness, who puts everyone else’s needs before her own. I realised why these characteristics led me to the infinity symbol.
As I researched more about the infinity symbol, I discovered how many of the designs link to the importance of your roots and the interconnected branches of a loving family. As my own family have my heart and fill my soul, these symbols became even more powerful.
The Infinite Dreams collection became cohesive, reflecting all the qualities in beautiful designs. The designs are made to empower and protect; to show unconditional love; the strength of empowerment and support from your tribe despite any battles you face.
Infinite Dreams was ideal for creating a poem around the meaning of infinity and the symbols that represent it. The verses are based on each of the main symbols and references I wanted to include in my collection. I’d been dreaming about adding poetry into my creations for Paprika Jewellery which made me so excited for this.
The poem is the heart and soul of the Infinite Dreams collection. I’ve built the full extent of the designs around it. As you can imagine that the collection is brimming with infinity symbols, celestial charms and celtic symbols of infinity, such as the celtic knot and the tree of life symbols; which I’ve explained below. Mostly it’s just an inspirational poem for you.
Every purchase from this collection will come with a free postcard that I’ve designed with a verse from this poem. The verse will link to the symbol used in the design. I hope to eventually spread this system to all of my designs so I’d love any feedback. Just email me at paprikajewellery@gmail.com.
Glowing shadows mature in an eternal scene,
Sheltered support where branches intervene.
Through myriad roots emerge infinite dreams.
Sparkling raindrops creating a lustrous sheen,
Showered by the abundance of hope you have seen.
Through myriad shimmers emerge infinite dreams.
Comforting warmth embraces you from dire fears,
Engaged virtue by way of the strength of tears.
Through myriad wishes emerge infinite dreams.
Shooting stars spread in a cosmic grandiose scheme,
Stunned by the extent of your soul’s graceful gleam.
Through myriad flickers emerge infinite dreams.
Sleeping on rainbows, sewn with love at the seams.
Scattered crumbs from everlasting sunbeams.
Through myriad colours emerge infinite dreams.
Continuing loops knitting life, interweaved.
Unconditional love, yet seen to be believed.
Through myriad spirals accomplish infinite dreams.
By Laura Mckee ©️2019
I really appreciate your continued support and am pleased to share this with you today. However, I must remind you that this poem is under copyright. Please do not share, copy or print this image or wording for any purpose.
The Infinite Dreams poem represents the hopes and dreams I see in my future. As this poem was the basis for the collection that would mark the reopening of my shop, it was very important that it meant something to everyone. The designs are from the symbolism used to represent eternal connections.
There are many interpretations of the infinity symbol, based around there being no end and no beginning. The circles represent a never-ending attachment, such as everlasting love or a vivid connection. It’s been used for centuries with these other meanings.
Modern interpretations are that the interconnecting circles represent each side of a relationship; cementing the idea of being ‘together forever’. The symbol used in Celtic knot designs has interlacing, continuous patterns showing the continuity of life and the double infinity design means “double absoluteness.”
The Celtic theme continues with the Tree of Life, the branches and roots joined by an endless circle. This symbolises the connection of heaven, earth and all living things. A tree starts as a seed, grows, reseeds and begins the cycle again. The roots are the bond we have with our family and ancestors – representing the circle of life in all things.
Other meanings behind the symbol represents perfection, duality and empowerment. It also stands for the equality between men and women and has been used by the UN Development Fund For Women to reflect the message of endless possibilities and empowerment for women.
As you can imagine, it was busy, exciting and occasionally chaotic in our house as I got getting ready for this launch. I couldn’t have done it without Joel’s help, especially with the photography. It’s been great to get back to making but being able to put into practice all the things I’ve learnt whilst recuperating, has been satisfying.
There are boxes brimming with beautiful Jewellery and we’ve had a semi-permanent photo studio set up in our front room with all of my updated props. We intend to photograph all of my stock once I’ve recovered from the launch – the reason this blog has taken me a while to finish editing.
I’ve been busy tapping away on the keyboard as I update the whole shop and tell my story so it’s important to the whole shop. I’ve written my new listings using everything I’ve learnt about sales and loved every minute of preparing to share my first ever collection with the world.
I’ve been sharing sneak peeks along the way but I wanted to show you my workspace. As I’m mostly stuck in bed, this is where I create. I used to have a craft trolley next to my bedside table but it used to get so messy! Joel suggested this gorgeous unit so I have a neat working space to keep all my goodies in.
The designs are for the fierce warriors; loyal friends; honest wives/partners and women of your family who have your unconditional love, including yourself. I want the designs to remind the wearer of the endless possibilities awaiting them if they don’t let life’s hurdles hold them back. I want the collection to inspire and empower.
All in all this is a celebration of love, family and equality. I want people to see these designs as a way of celebrating life even if there are barriers to achieving your dreams. The most important thing to remember is that although this collection is based on infinity we do only get one chance in this life so look after you and reach for your dreams today. ♾
My Etsy shop The Paprika Jewellery aims to support positive thinking by creating designs from positive themes and provide inspiration. Visit today for luxury jewellery & accessories from and for the soul. Positivity for you now and hope for a vibrant future.
Haven’t visited my Etsy Shop yet and have FOMO? You can still check out all the Made To Measure, limited edition and one of a kind goodies from my Infinite Dreams Collection. See the whole range by clicking on this link now. ➡️
If you like what you see in the catalogue or Etsy shop you can get a 15% discount code by signing up to my VIP access area.
You’ll also get free access to my resource library and I’ll send you my Free Journal Prompts with positive lines from my poems. Just sign up to my occasionally regular newsletter today. Click this link now 🔁 Strength of Tears & Paprika VIP Access
✋Hey there! You could really help me out. Just one minute of your time to press that share button helps me so much! You’ll literally make me do a bed-bound happy dance. Now there’s an image for you! Go on, you know you want to!
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. Continue reading About Laura
Hey there, are you someone who needs a bit of a boost in your day?
Maybe you’re feeling like you’re missing the mark at work, that your relationship’s doomed, that you’re useless because you’re chronically ill or that you’re just having disastrous days.
If you’re a negative thinker or a self-sabotager and the life you want seems a long way off, then this post’s for you! I’ve got tips for making positive changes by just spending a few minutes a day on affirmations. There’s even science to back that up! So now with your morning coffee you can start your day the positive way!
What are Affirmations?
Maybe you’ve heard of Affirmations but think they sound sappy or too out there. Maybe you don’t think they’d help as you’re ok, just not as successful as you’d hoped. Stick with me and I’ll show you how affirmations help you build a positive mindset.
Before I start you off on your journey to a successful day, you need to know what the deal is. I first heard of Affirmations about 15 months ago and now spend a few minutes each day on them. I think much more positively now and want everybody to realise they can find positive in every day. Here are a few simple tips to help you!
Affirmations help you set an intention for that day (or however long you need it for), starting with ‘I am’ for example. They’re a great tool for helping you think more positively and if used regularly, each day will be more positive! OK, so your thoughts won’t change overnight, but I can assure you that they’ll work if you stick with it.
You use something you want to feel, do or happen and write it as though it’s already happening. So instead of ‘I want to feel loved and happy’. Your affirmation says ‘I choose love and happiness’.
You may have to do a little bit of work to crack the code at first, but you’ll soon be starting your day the positive way. So if you’re feeling low or a bit meh; then this is such a simple way to structure your thoughts and create a positive loop:
positive thought = positive actions = self-worth = positive thought and so on.
How Affirmations Work
For an affirmation to work fully, you need to trick your brain. A bit like changing the TV remote’s batteries, you need to put negative and positive in the right place. Instead of matching them to a symbol, you need to rewire your thinking, especially if you’re a Negative Nelly!
To rewire your brain, you have to make Positive Polly drown out Negative Nelly. To do that, you need to say the affirmation out loud, more than once! Just like exercise to improve our physical health is repetitive, any exercise to improve our mental health needs to be repetitive. Practise makes Positive!
To Create this positive repetition, you could write them in your journal/diary, put them on a memo board/fridge or record them using a voice memo app and listen to them wherever you are. I use all 3 of these for maximum impact!
Each time you create these positive responses from affirmations, your brain kicks in the reward mechanism. I won’t get too sciencey, but if you use affirmations about your most important values, your brain will soon begin to have positive reactions.
These positive reactions create a reward, such as increasing your self-worth. Once your brain gets a reward it will want more. You’ll start thinking and acting more positively. You’ll value yourself and feel a sense of purpose. You’ll want to look after yourself more and start creating more positive than negative in your life.
I want to start you on this journey, so read on and see how much it helped me and get yourself set the 5 affirmations to start your successful day.
**Disclaimer – this won’t happen overnight! You’ll have to put the work in!
My Journey with affirmations
One of my favourite affirmations is ‘I replace anger with compassion and understanding’. When I first picked it from my set of cards, I wasn’t having the best day. I was angry with myself about something (I’ve no idea what) and almost put it back in the pack!
When I say I was angry with myself, I really mean that I felt guilty about something I probably should have done. It’s always been a habit of mine, but when I was still processing my chronic illness I felt like this a lot!
Anyway, I left it on display for a couple of days and as suggested, I read it often and would say it too myself in my head every so often, as I wasn’t cool with saying it out loud at first. I started to feel calmer soon after making that choice to keep that card.
I started to feel less frustration and guilt and began to feel more positive. As I stuck with it, I found those Negative Nelly feelings were getting drowned out by Positivity Polly.
The more positive I felt the more positive action I took with my self care, which led to more positive thinking. And so the cycle continued and I was hooked!
5 Morning Affirmations to Guarantee a Successful Day
So this is what you’re here for. If you’ve skimmed to get here then do make sure you know what you’re doing, you cheeky thing! I’ve made one for you and a blank one to put personalised affirmations in.
You can download these here: Morning Affirmations
These are simple affirmations for success and to use each morning to set you up for a great day. Why not have a go tomorrow morning and come back and tell me about it!
If you’d like access to more free affirmations, then just sign up for my news and exclusives emails, using the pop up form or the link below.
Sign up today for your free printable Affirmations cards
References
https://www.louisehay.com/affirmations/
If you’re really into Science then this explains why affirmations work and what effects they have on the brain. How Self Affirmation affects the brain
If you follow my blog you’ll know that I’ve been very active in a variety of support groups since becoming chronically ill in 2014.
So why the change of heart?
In nearly every group I’ve joined, there’s been a culture of drama and/or negativity. I love to support others, but my health was suffering by getting too involved and I realised that I was done with being an active group member. I have left most groups, so I want to explore online support groups and share my experiences.
What is a support group?
Why I joined online support groups
Rewind to when I first fell ill. I was isolated and lonely as friends began disappearing from my life. I was struggling to understand my illness and my mental health was suffering. When I joined an online support group, I realised I wasn’t the only one with my diagnosis, which helped my mental state. However, the negativity in the group exacerbated worries about my future. I decided this wasn’t the group for me.
So, I joined an open group called Mission Migraine. It was full of amazing women and had a positive vibe, yet we all supported each other. What I loved most, was the we shared our own stories to raise awareness and challenge misconceptions. I was proud of what we were doing, so I started the Twitter account @migrainemission to continue raising awareness. Sadly, the Facebook group is no longer running.
Finding the right fit
I knew that Migraine wasn’t the full picture, so I explored a variety of groups to help me understand what was happening. I connected with other people with similar symptoms to my own, in well led groups. I was able to access information to help me research possible causes of my symptoms. In one group, I read about a consultant in Cambridge, specialising in Pulsatille Tinnitus. This was a pivotal moment in my journey! If you don’t know my story, then you can read it here.
When I was initially diagnosed with a rare brain disease, Idiopathic Intracranial Hypertension (IIH), I joined IIH support groups, which helped me find information and reassurance. Soon I became overwhelmed by the number of Facebook groups I was in, so had to decide which of these were right for me. I left those that weren’t. I’d found more friends who totally understood my pain!
When it no longer does what it says on the tin
In most groups I joined, I’d encourage positivity and try to raise confidence levels. I’d post inspirational quotes, share knowledge and helped other’s learn to celebrate the smallest achievements. Helping others gave me a sense of purpose and achievement.
But I couldn’t get away from the drama.
Members of support groups are vulnerable, with many suffering with unrelenting pain, crippling anxiety, financial or family worries. This creates a breeding ground for negativity and arguments. If this disruptive behaviour isn’t dealt with effectively, then the group is no longer able to support it’s members and is not fit for purpose.
As an empath, I’m susceptible to getting too involved. I gave so much, but my physical and mental health were suffering. What I was getting out of these groups now? I’d had enough of group politics and feeling responsible for near strangers. I worried I’d lose friendships, but when I did leave I was flooded with relief. And of course, my true friends have stuck by me.
Would you benefit from an online support group?
I may find a group that’s right for me again one day, but next time I’ll do my research first. Here’s a list created from personal experience and research. (See below)
Pros
Cons
What is needed to create a good social support network?
Do online support groups work?
The disadvantages of online support groups are discussed by authors and healthcare professionals. Concerns about the quality of information, criticism of health care services/professionals and reinforcement of negative behaviours are certainly valid. However, this study. of online groups for those with physical illnesses, found that concerns about the risks of online support groups are not always justified.
In my opinion, there is increased risk in online peer-to-peer support groups, as those facilitating the group may be vulnerable due to their own physical or mental illness. This may make it more challenging to nurture a positive and safe space.
When looking for online support, it’s recommended that you ask questions before joining a group to find the right fit for you. If you don’t feel comfortable or safe in a group, put your own health first and take action. Online support groups aren’t for everyone, but remember that they aren’t the only option.
Finding my own way
I have my own network of friends online. We give mutual support through physical and mental illness. I also work 1:1 with a trained professional, via online video conferencing, to support my mental health. I wouldn’t have all of this support, without having been in the groups. I also have an amazing network of friends and family, who have shown that they’ll stick by me through thick and thin. I know how lucky I am to have that and I’m the happiest I’ve been in 4 years of chronic illness. I don’t know about the future, but for now; I’m done with online support groups.
References
Pain Doctor-Finding help online
Are you a chronic illness warrior?
By that, I mean, are you the kind of person who:
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.
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:
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?
@WHO says #Migraine is the 8th most disabling disease in the world. #MHAM
The time I’ve spent in the last year really trying to get to know my migraines hasn’t been fun. I struggle to distinguish between the symptoms of iih and migraine. I’ve spoken to other sufferers of both (it seems common to have migraine as a co-morbid condition to the rarer IIH). Mainly, the consensus is that the migraine is pulsating and the IIH is more of a vice crush, ice pick and feeling hit by a bus whilst suffering with flu. And as it is also called pseudo tumour cerebri-it also mimics brain tumours; hence my mobility issues and the symptom that found me my diagnosis- pulsatile tinnitus. To be honest, I don’t think I’m having many migraines at the moment. But, I don’t really know for sure.
However, we have, this year, discovered that I definitely suffer from hormonal migraines and that when I have those I pass out. That’s pretty disabling isn’t it? The time I’m out isn’t for long, but the aftermath lasts for days. I lose the ability to walk properly (well, as I struggle with that anyway, I have to think back to before I was immobile and after I passed out then, I struggled to walk. I have to go to bed and I just cannot do anything. I live my life in the dark mostly anyway and I always have horrendous nausea, but this brings it on in full force and sometimes for what feels like days, but in truth is about half an hour, I spend retching over a bowl, shivering and shaking.
I’m having a break from these attacks at the moment though. The morphine has had an unusual side effect on my body (my GP even had to look it up); it’s stopped my monthly cycle. So I don’t have hormonal migraines at the moment, (well, at least not horrifically violent ones), but when I do; they are pretty disabling…says the person with the disability that requires a walker to get from her bed to the en-suite bathroom!
Then, there has been the time spent getting to know so many of you, my fellow sufferers; those of you who can’t hold down a job, go out of the house or are even trapped in their bedrooms. It’s not fun being trapped in your bedroom or even realisation, that there needs to be a complete shift in perception. So that when I think about the future of migraine life for my son; I can hope that there may be new treatments available, that employers will be more willing to make reasonable adjustments for those that need them. That maybe one day migraine won’t be used as an excuse to pull a sickie, it won’t be pushed to the back of the queue for funding and that it may one day even be understood by more than a minority that, MIGRAINE is classed as disabling as quadriplegia and active psychosis; and yes, you did read that right!
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!
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?
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
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
Laughing While You’re Crying 