Tag Archives: chronic migraine

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. Continue reading About Laura

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5 Morning Affirmations To Guarantee A Successful Day!

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5 Morning Affirmations To Guarantee A Successful Day

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.

job12-280-chim-00918If 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!

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Set Positive Intentions

 

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

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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

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I am full of gratitude and inspiration affirmation

  1. I am full of gratitude and inspiration
  2. Today is a wonderful new day, full of success
  3. I am open to positive change
  4. Today I will share my knowledge with others
  5. My ideas are worthy of being shared

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Blank Affirmation design for personalised 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

 

Chronic Illness Bloggers

Why I’m done with online support groups for chronic illness! #chronicillness #chronicblogs

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? 

  • A face to face or online community open to anyone, but often focused on specific topics i.e. mental health or pain conditions
  • Led by a professional facilitator, such as a nurse or counsellor, or by group members/founders
  • A comfortable space where individuals come together to share their stories, experiences, feelings, coping strategies and information.
  • A way to help reduce isolation and loneliness by realising that there are others dealing with similar situations.
  • A bridge between medical support and self-help

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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.

DesignWhen 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.

Design

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

  1. Gaining self-worth or a sense of purpose
  2. Feeling less lonely or isolated, especially for those who may not have access to face-to-face support groups
  3. Getting support in times of stress, depression or anxiety
  4. Being anonymous allows you to vent or discuss feelings openly and honestly
  5. Staying motivated to manage your physical illness or mental health
  6. Gaining control of or feeling hopeful for the future
  7. Raising awareness of invisible illnesses, disabilities or a specific disease
  8. Getting practical feedback about treatment options, benefits or worker’s rights
  9. Feeling empowered by supporting others or working successfully in a team
  10. Accessible when it suits you, even in your PJs, leading to more participation

Cons

  1. Peer to peer groups are probably be run by unqualified members, who are also unwell – vulnerable people supporting other vulnerable people
  2. Increased negativity due to constantly discussing aspects of your illness or disability
  3. Interference on posts with unhelpful comments or incorrect information
  4. Written communication means that inference or tone can be easily misjudged
  5. Participation online may compound isolation from other friends or family
  6. A lack of control over medical advice, quality of information or criticism of health care services/professionals
  7. Reinforcement of negative emotions and negative remarks to other participants
  8. Disruptive group members may dominate the conversation, cause tension or create interpersonal conflicts
  9. Comparisons of whose condition or experience is worse
  10. Possible use the environment to prey on vulnerable members

Design

What is needed to create a good social support network? 

  • Those running the group must be very clear about what support is available and when.
  • Clear rules covering: disruptive behaviour, sharing medical advice and discussing medical professionals.
  • Conflict needs to be handled professionally.
  • A positive environment, that’s nurtured and monitored so that people feel listened to and that other members will show empathy and be supportive.

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.

Chronic Illness BloggersReferences

Pain Doctor-Finding help online

Mayo Clinic guide to support groups 

Mental Health America-Finding online support groups

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.

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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.

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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.

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  • 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.

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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.

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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?

 
Chronic Illness Bloggers

#MHAM Day 8 #Migraine: explaining #genetics and #disease to my newly diagnosed son (12).

#Migraine is a neurological disease caused by genetics and a hypersensitive brain. #MHAM


 Firstly, I’m sorry this blog is so late. My hypersensitive brain, just fell asleep, before I’d finished writing.

 My son, Zeke, has always had headaches, but over the last few months they’ve escalated; occurring more often, with vomiting and dizziness.We started keeping a diary, but I knew just by looking at him, when he came to us at night, shaking, teeth chattering and saying that everything felt like he was not really here; that he had got this disease too. I act exactly the same way when my migraines start. It is one of the hardest things to see; my own migraine; but happening to my own child. 

Then they started to impact on hIs school attendance and him worrying about going out for the day without us; just in case he gets a migraine. The doctor confirmed our thoughts, when my husband took him to the surgery. She suggested he try a triptan nasal spray.We were all happy with this as we’d been dreading tablet fiascos with him in the middle of the night. (Don’t even go there)! We’ve only used the spray once so far; he calmed quickly, his headache eased and he didn’t vomit. We hope we will see this reaction every time we need to use it, but at the moment, we’re enjoying some migraine free time. 


So, to the hypersensitive brain: It’s so hard to explain that weird feeling that comes with a migraine and we all know it’s different for everyone, but it can even be different every time for us.. Sometimes I feel like I’m walking on marshmallows, sometimes I get vertigo (as an aura) and feel like I’m spinning around the room as though I were in a tumble dryer! Zeke describes his migraines as everything getting big or feeling light-headed. But for both us, we get irritated by everyday family noise, even the sound of a spoon touching a bowl hurts; his musical world can be too much. 


Zeke’s migraines are a constant source of guilt for me. I know that he gets them from me and I hate that so,so much. A mother’s instinct is to protect their children from harm. Joel (my husband)  is constantly reminding me that it’s ‘just genetics’ and he’s right isn’t he?  I have as little control over Luca’s hay fever, as I do with  protecting Zeke from suffering from this horrific disease.

There’s that word…disease! To us, as adults, we understand the implication of the term ‘neurological disease’. Last weekend, Zeke asked me if my IIH was called a disease and why. (yes, I’m lucky enough to have two neurological diseases)! I realised that the boys are now at the age where they are more exposed to what is happening around the world. The word disease, is associated with illnesses, such as Ebola, a horrific disease that spreads rapidly to others. Closer to home they know they’ve had vaccinations against diseases, such as measles and rubella. These deadly diseases are so different to the neurological diseases that we are so familiar with in our house. I made a vague attempt to explain the meaning of the word ‘disease’ and he went away, knowing for sure  that he couldn’t catch my IIH. I wonder if he has felt like he’s ‘caught’ migraines from me and so he may also get IIH; a disease which has caused complete devastation to our family. It’s so hard to know what a 12 year old is thinking….

So I’ll leave you with the definition of disease. “a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.”

Day 4 #mham16 @WHO says #Migraine is the 8th most disabling disease in the world. #MHAM #disabilaties

@WHO says #Migraine is the 8th most disabling disease in the world. #MHAM

The time I’ve spent in the last year really trying to get to know my migraines hasn’t been fun. I struggle to distinguish between the symptoms of iih and migraine. I’ve spoken to other sufferers of both (it seems common to have migraine as a co-morbid condition to the rarer IIH). Mainly, the consensus is that the migraine is pulsating and the IIH is more of a vice crush, ice pick and feeling hit by a bus whilst suffering with flu. And as it is also called pseudo tumour cerebri-it also mimics brain tumours; hence my mobility issues and the symptom that found me my diagnosis- pulsatile tinnitus. To be honest, I don’t think I’m having many migraines at the moment. But, I don’t really know for sure. 

However, we have, this year,  discovered that I definitely suffer from hormonal migraines and that when I have those I pass out. That’s pretty disabling isn’t it? The time I’m out isn’t for long, but the aftermath lasts for days. I lose the ability to walk properly (well, as I struggle with that anyway, I have to think back to before I was immobile and after I passed out then, I struggled to walk. I have to go to bed and I just cannot do anything. I live my life in the dark mostly anyway and I always have horrendous nausea, but this brings it on in full force and sometimes for what feels like days, but in truth is about half an hour, I spend retching over a bowl, shivering and shaking.


I’m having a break from these attacks at the moment though. The morphine has had an unusual side effect on my body (my GP even had to look it up); it’s stopped my monthly cycle. So I don’t have hormonal migraines at the moment, (well, at least not horrifically violent ones), but when I do; they are pretty disabling…says the person with the disability that requires a walker to get from her bed to the en-suite bathroom! 

Then, there has been the time spent getting to know so many of you, my fellow sufferers; those of you who can’t hold down a job, go out of the house or are even trapped in their bedrooms. It’s not fun being trapped in your bedroom or even  realisation, that there needs to be a complete shift in perception. So that when I think about the future of migraine life for my son; I can hope that there may be new treatments available, that employers will be more willing to make reasonable adjustments for those that need them. That maybe one day migraine won’t be used as an excuse to pull a sickie, it won’t be pushed to the back of the queue for funding and that it may one day even be understood by more than a minority that, MIGRAINE is classed as disabling as quadriplegia and active psychosis; and yes, you did read that right! 

Day 2 #MHAM16 #MHAM #migraine awareness month #fact


The majority of people w/ #Headache and #Migraine are not diagnosed. #MHAM

Have you been diagnosed? Do you self-medicate? Why do you choose to do this? 

I have suffered from migraines since puberty…since I was about 12. However, I was misdiagnosed with sinusitus and then post viral syndrome. Then I realised that I had a severe reaction to Monosodium Glutamate and would be violently sick, shake and shiver for hours and have a horrible headache for at least 24 hours. Then I unearthed that my ‘mood swings’ were linked to too much sugar or certain alcoholic drinks-mainly a certain brand of beer that was high in sugar! I was able to make some changes and with the help of my, now husband; I gained some stability to my moods and ‘allergic reactions’. 


After our children were born and we had survived many more turbulent and devastating storms and were still holding hands under the same umbrella; I began to suffer with what seemed like migraines. Joel (my husband) went to our village chemist and discussed it with our pharmacist. He suggested an over the counter rescue medicine. It didn’t do very much to be honest, but it helped more than paracetamol. I took it for each attack, but couldn’t manage to work during these attacks. These attacks were quite spread out and had no pattern. I didn’t even consider seeing a GP. 

But one day our lives changed forever… My story. This very in depth explanation of my life so far will give you a good idea and even expand on what I’ve already written. (It needs an update to my current situation but that doesn’t impact today’s fact).

If you want a brief version…. I was eventually diagnosed, at 32, with migraines after a lot of misdiagnosis. My symptoms don’t include visual auras and my pain is mostly associated around and in my right eye. It was misleading for us, as well as the many doctors we saw, with enlightening specialisms. We certainly didn’t put the symptoms I’ve described from when I was a teenager, together with the newer symptoms; until I saw a headache specialist in June 2014. My story has since become even more complicated with another headache disorder that is actually a rare brain disease and my world has come to a stand still. I am now bed bound. I am now a Chronic Pain Warrior!

I often wonder if I’d been diagnosed as a child, whether life would be different now. I can’t change that, however, my own 12 year old son has been recently diagnosed with migraines. I don’t think they would have been if we hadn’t been through what we went through in the early days of our relationship. He shivers, just like I did/do and he reacts to too much sugar and Monosodium Glutamate/E621. I hate that I’ve  passed that gene on to my child, but he responded quite well to the sumatriptan nasal spray on our first trial, during the last attack. We are now waiting to see what happens next for him. What we do know, is that we’ve weathered the storm before and we can weather it again. We know that he will have the correct support from doctors and we know the migraine drill….diaries and triggers etc.

What a difference being diagnosed makes. I’d love to hear your stories about being diagnosed. Are you diagnosed? If not, why not? If you are, what age were you diagnosed? Tell me anything you want to about up our diagnosis! 

All I know, is that if the majority of people with headache disorders aren’t diagnosed, then those of us that are shouting as loud as we can on social media; must persevere, so that people don’t have to suffer in a similar way to my experience. Everyone deserves the right to be treated effectively, but that means that doctors need to be trained effectively and for that we need more money to be spent on this! We need to be heard in the UK as much as you do in the US! We need to stand united as migraine warriors. I’m one; are you? 

#MHAM16 #MHAM Migraine Headache Awareness Month

I can’t believe a year has passed and we have arrived again at the 1st of June. Now to start another exciting month of raising awareness, support and hope for the millions of sufferers of migraine across the world. Yes, strictly this is America’s Migraine and Headache Awareness Month (MHAM), however, I’m British and I’m going to be supporting my American Migraine and Headache warrior friends every day from across the pond! I’ll be doing as much as I can, every day that I can, to support this amazingly well organised advocacy; for some of the most debilitatiting diseases in the world that are so misunderstood, misused and misdiagnosed. 


This year there will be ‘A fact a Day’ and I will try and blog about that fact as often as I can but if not then I will be sharing each fact on Twitter, my Facebook page and on my personal page. I will even try and spread the news as wide as I can in the spoonie community, via the amazing Conscious Crafties site. Mainly a shop, it sells crafts made by spoonies, like me, (people with chronic illnesses or disabilities) or their carers but there is an open Facebook page where information, articles and sellers blogs are posted. Here is the link https://www.facebook.com/consciouscrafties. I also have a wide audience on my Mission Migraine Twitter feed, with spoonies coping (or maybe not) with a range of illnesses; carers; doctors; nurses; life coaches and many others whom find our daily positive quotes interesting! 

As you can see, I am going to make sure I try and extend the reach of my blogs as far as I can; I am fully committed to raise as much awareness as possible all year round; so I love being able to join in with the US awareness month. We do as much as we can over here, but resourses are pretty limited, in my opinion, compared to the US community. So, last year I am quite sure that I was the only UK blogger to write daily. I am very poorly this year with my main condition, (IIH-a rare brain condition-main symptom-constant headache, that’s right I’m a BOGOF); so I won’t be as active as last year, but I will do my best.


So what can you expect? Every day I will share the fact of the day, accompanied by a pretty picture I expect! I also hope I will be sharing links to other blogs and retweeting at least once a day. When I’m well enough, I will write about the fact in different ways with a different style or viewpoint; aiming to  grab the readers interest and get people to share, share, share! So roll on Migraine and Headache Awareness Month (MHAM) 2016! I can’t wait to bombard: my friends, followers and readers who have yet to be found, with facts, my opinions and experiences. Sharing for Awareness, not sympathy- as always! 

Today, I’m just going to share the fact and leave you to think on it. Thank you for reading, I hope you will read and share as much as you can through the month. And be on the look out for some extra sneaky surprises! 


75% of the world’s adults had a #Headache or #Migraine in the last year. #MHAM


#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? 

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