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.

Day 20 #MHAMBC #MHAM Who inspires you by never giving up despite their headache disorder?

I have been pondering this question for 2 hours now and I can’t pinpoint it to one person so I’m going to write a list of people of give me strength in both the migraine and the iih world. They are people that I have connected with initially through Mission Migraine and then another closed migraine support group and the IIH UK support group on Facebook and I speak to them online daily, sometimes on the phone and some I have been lucky enough to have met or will meet soon. I will give a brief reason as to why they inspire me. 

  

• Kate Bestwick-founder of Mission Migraine; this lovely lady saved my life one day by writing one small entry in a post in another group (where I was not very happy or supported) about her new group that she’d started. She suggested that I started to meditate and I now do so every day. She went through tough times last year but with CBT, perseverance and determination (and a hint of stubbornness) she remains our fearless leader and speaker of many wise words. Not to be stopped by daily headache she goes to the gym, works part-time, looks after her young children and still manages to stay beautiful even sticking her tongue out! 
• Michelle McGowan-admin of Mission Migraine; this crazy chick doesn’t let the migraines beat her down: she sticks two fingers up, takes her bitch mints (painkillers) and gets on with her day; unless it’s a killer one! She is always there to check up on you and remembers so many members birthdays it’s unreal. She posts often about her symptoms to raise awareness of all the different symptoms that come with migraine and to ensure that everyone knows: it’s not ‘just a headache!’
• Janey G IIH- this caring and wonderful lady found me through the support group. She has been through tough times lately with dizziness and eye problems (part of the deal with IIH and the meds that come with it). She’s brave and strong and tries to carry on regardless. She shares my blog and shows me constant support. We haven’t met yet, despite living relatively close but we will as soon as I’m well enough to travel. She seems to know everyone in the group (?) and is great at campaigning for rare disease campaigns.
• Suzy Hesketh-this lovely lady runs a closed support group that helps me and many others vent when things get too much. I have been so lucky to have met her before my symptoms got too bad for me to travel. She makes me laugh despite battling many conditions and her strength and courage are admirable. She has been on the other end of the phone when I have had days when I can’t stop crying and she understands life with chronic illness in all it’s entirety but still manages to never give up! Apparently she is coming to stay with me in October! 😜
• Kim Sklinar- a Mission Migraine member; Kim contacted me when my symptoms took a huge turn for the worse in September 2014. She lived about an hour away from me and wanted to visit with her fiancé. We all got on so well, it felt like we’d known each other for years! Mark, her fiancé really helped my husband by sharing his feelings on living with someone with a chronic illness. Kim is inspirational in the way she drives her own business and strives to be a migraine advocate too, being an advocate for one of the British  migraine charities. She regularly contacts me to see how I’m doing and I’m hoping to attend her wedding reception in a few weeks, where she has provided a migraine room! 
• Katie Mercer- I found Katie in the early days of joining the IIH forum and, although she only lives a short drive away from me, we still haven’t met. She has supported me through every step of my journey of being diagnosed with IIH and understands having migraines too! She supports me by sharing my blog nearly every time I post and she always has a supportive comment to drive me through my tough days. She has recently inspired me by walking from London to Brighton (60 miles) in aid of MIND charity despite still suffering regular headache and migraine symptoms. 
• Kath Conway- Kath has supported me through every moment of my journey since I’ve met her. Initially with advice about work and pensions and then more significantly, helping me deal with my loss of mobility and having to learn to use a wheelchair and a stick. Kath suffers from Hemiplegic Migraines that leave one side of her body paralysed and can often leave her in bed for days unable to even talk properly, let alone do anything. Yet, she remains mostly positive, funny and encouraging and has got me through many bad days. 

There are so many more names to mention such as Emma Nugent, Julie Donogue, Norma Ann-Dann, Diane Williams etc etc….. This blog is my way to say thank you for all the support, advice, encouragement, care, understanding and friendship you give me. Without you, this blog would not be possible and would never have been started. You inspire me to inspire others. Xxx

  

Day 11 #MHAMBC #MHAM How do I help others have hope? I don’t need a reason; It just happens!

This question is one I know the answer to immediately but is probably going to be the hardest blog post to write yet. I’m just going to say and get it out there and then I will explain it a little more. It’s hard to say because I’m not the kind of person who likes to talk about myself in this way. I’ve had to learn how to do it in interviews in the past, but other than that I don’t really do it.

The way I help others have hope is by being me!  There I’ve said it. I’m so full of positivity through such a bitch of a situation (and I am only that positive because of my husband and children and close friends that keep me there by the way) and I decided to write about it. I only ever chose to write about it because I wanted to raise awareness and find myself something that I could do when all the things that I loved doing were slowly being taken away from me because of my illness making it impossible to do them. I never write or share posts for sympathy!

My blog is read by a range of people and I have had a whole load of feedback from them about how I have inspired them with my positivity and so I guess that is what this blog is about.

• My friends- these were the first people to read it. They are generally talking to me about my blog in terms of how I cope so amazingly with such a tough situation and write with brutal honesty but still keep a sense of humour that it gives them hope for me and my family and our future. I have even had suggestions that I should write a book when I’m well because my writing is so powerful. Some friends, some that I don’t even know so well in some cases, have since begun sharing their own stories about different things they were going through and how our positivity gave them inspiration whilst coping with their own situations.
• My fellow sufferers-next I shared my blog with migraine sufferers through our MIssion MIgraine Facebook page and my IIH support group. Fellow sufferers saw similarities between their life and mine. Some couldn’t believe how unwell I was and how little treatment I was getting whilst I wait and wait for my specialists to come up with the right treatment plan; yet still I remained positive. Friends I had already made gave me hope in the comments they wrote to encourage me to keep writing and that ricocheted into hope spreading to other sufferers who could see that if ‘I could do it, they could’!
• My peers-other blog writers have given me amazing feedback about how my positivity shines through in what must be a very difficult situation. I have even been able to share ideas and ways to tackle depression and lack of hope to others in chronic pain and I hope as my followers grow that I will be able to continue to do this where I can.
• Most recently-my husband’s peers and colleagues. He spoke about our story as part of Mental Health Awareness Week. You can read the transcript of this talk and my observations around it here https://laughingwhileyourecrying.wordpress.com/2015/05/19/why-does-sharing-our-story-matter-should-we-just-tell-friends-and-family-or-should-we-share-with-peers-colleagues-and-other-sufferers-too/ he has had many people speak to him about how his positivity has given them hope and I have had a few new followers and even a couple of messages.

My role as Tweeter for Mission Migraine has allowed me to reach out to even more people and now joining in the blogging challenge has extended that even further. I am gaining hope by reading posts from so many experienced advocates and great bloggers and I hope that my blog is inspiring other participants too. Even though I’m from the UK; Mission Migraine is an open group and has many members from the US and that is why I decided to join the blogging challenge. It has opened many new doors labelled ‘hope’ for me and so I just hope that my blogs can return the favour.

The Migraine and a Headache Awareness Month Blogging Challenge is organised by The American Headache and Migraine Association

Day 5 #MHAMBC #MHAM What is my symbol of hope?

Today has not been a great day, pain wise. I woke up groggy, pain searing into the pack of my eye and lead weights tied to my occipital bone. I meditated and took all of my usual preventatives, naproxen and diazepam. I got through 2 migracaps and I couldn’t manage my normal morning nap. I ended up taking a dose of oramorph. Then I was silly and I didn’t listen to my body; I ended up tidying up after my kids. Too much! Especially as I’d already planned for a very close friend to drop by. Today was one of those days when I wanted to pretend that all is well; that I’m not disabled and awaiting a Zimmer frame. Today I wanted to win over the pain and fatigue. I stayed downstairs with my family to eat our evening meal (now a rare occasion as I’m often in bed by 5). I forgot/broke the rules and I’ve just payed for it with an excruciating climb up the stairs; shots of pain racking down through my neck and shoulders; pressure building in my head with each step despite the ice-pack on my head and the oramorph and naproxen I’d taken; tears ready to explode at any second even though that just makes it worse; My husband telling me silly jokes to distract me and then having to lift me from my crawling position onto the bed and find all the drugs I need: not leaving me until I’m in my safe place.

So what on earth can I think of as hope today? The fact that I stayed downstairs and made myself suffer was worth it because my eldest son; 11, without prompting, came to snuggle up with me. This is a rare thing these days and this is in fact what made me cry when I did at last make it to my bed! That one little thing! But that’s not my symbol of hope. My symbol of hope is one that involves humour and it’s one I share with friends that I support through their own illnesses. All I’m going to do now is post the image that says it all! Because this is what I say to myself everytime I need to push on through-most days-and it has become so associated with me that I even received my own very special pair of very large ones for Christmas from a very special friend. I think that the humour in itself is a symbol of the positive way I tackle these illnesses and that in itself offers me hope!

The Migraine and Headache Awareness Month Blogging challenge was organised by The American Headache and Migraine Association

Why does sharing our story matter? Should we just tell friends and family or should we share with peers, colleagues and other sufferers too?

Last week was Mental Health Awareness week (MHAW) and I have been very busy posting links on my Personal twitter and Facebook sites for mental health awareness but also to a much wider audience with the Mission Migraine Twitter Account that I run. I have been posting many links to groups that challenge mental health stigma and also re-tweeting beautiful quotes and sayings that link beautifully to the practice of mindfulness. However, in the relationship my husband and I have, we always support each other (with a side order of competition 😉) and he agreed to speak to a fairly large group of colleagues as part of the MHAW for Lloyds Banking group about how we as a family have coped with the past 16 months-since Jan 2014-and how the pressure on the family has affected him in his high pressure role within the company.

In this blog I am going to talk about 3 things: How sharing can help you and others and why that is why I came to writing this blog in the first place; how mindfulness can help anyone aged from 4-104 years old and especially those dealing with chronic illness and mental health issues; how my husband’s talk went and how it impacted on us and those he spoke to and how this might affect his colleagues going forward.

1: Sharing

So, sharing is caring right? If I talk about what is happening to us and share it amongst our friends a) they begin to understand a little bit about what life is like for us. If I didn’t do that then they would likely to just see me on my good days (apart from about 4/5 very close friends who let themselves in the house through a keysafe, or even have their own key, and come to help whatever state I’m in and have seen me at 0 colour on the dulux chart and unable to get out of bed). They would say ”you’re looking well” and I would be thinking about giving out flyers to to explain that I have an invisible illness! And that is why I started writing. At first just on Mission Migraine; where every post gets shared publicly on my Facebook page, and then by deciding to start this blog; then the sharing has become huge and now through my Facebook page https://www.facebook.com/Tearsofstrength. I have more followers that I don’t know now, than I do my friends. It blows my mind when I think about that, and that’s not even counting my awesome followers here on WordPress and on Twitter! All in all over 250 followers and growing rapidly. Wow! And that is how showing your vulnerability, and deciding that by sharing your story you might help just one other person, means that sharing is the right thing to do. Plus it is undeniably cathartic for me and I love every minute spent writing, even though it can take a long time for me to finish a post (especially as I like to talk so much).

2: Mindfulness

This is about being in the present moment. It’s another way of thinking about meditating; except it’s even easier. You don’t need anything more than 5 minutes and a little bit of quiet and these 4 steps.

a)   Find a quiet space where you can sit by yourself and not be disturbed for at least 5 minutes. Even a toilet can work but a park or your bedroom might be nicer…

b)   TURN OFF YOUR MOBILE PHONE!!! Don’t just mute it, turn it off. It’s only for 5 minutes.

c)    Take 3 deep breaths in through your nose and deep into your belly, not into your shoulders. When you feel ready to, close your eyes. Now try and settle your breath into a comfortable rhythm. It should be deep still and your stomach should rise and fall. You could count 3/4 breaths in and out. You could even hold for 2 when you breath in before you breath out again. Or breath in for 3 and out for 4, until you are ready to settle into that comfortable deep breathing that you don’t need to think about. This can take some practise. Don’t worry if you get this wrong. It doesn’t matter just keep practising.

d)     Now think about somewhere you would love to be; maybe a tropical beach with the waves lapping the shore; a beautiful pool with a gentle trickling waterfall; a magical forest with trees reaching the sky and their leaves making the clouds, with the grass beneath your feet as soft as cashmere wool or sitting on top of a mountain, looking down at the beautiful lights of the city that are glittering like constellations of stars. Tell yourself the story of the place and use all your senses; think about sounds and smells as well as what you can see. That’s it. Simple as that. When you have finished; take 3 more deep breaths before you open your eyes again. Again this can take some practice and your mind may wander on to your shopping list or how your going to fit in making tonight’s tea and get to the gym. It doesn’t matter; there is no wrong in meditation and mindfulness, it is all just about accepting the present and being in the here and now. The more you do it, the easier it becomes. Keep trying!

Now you can do this whenever and wherever and you don’t need to wait until you’ve finished work or anything. Infact, the less time you think you have to do this; the more you probably need to. I do this and also use guided meditation from YouTube such as this one:https://m.youtube.com/watch?sns=fb&v=PYsuvRNZfxE

There is more to mindfulness than this; it’s also about noticing the little things around you instead of rushing through your day all of the time. Joel talks a little bit about how he is becoming aware of that in his speech later. It’s about just trying to slow it down a little bi. It’s also about getting out and experiencing nature at the weekends instead of just being surrounded by technology all the time. It’s too much to go into now and I’m not an expert; I haven’t even read any books. I’m learning as I go and just trying to spread my time across time on myself and that on others. Time to be creative, time to rest and time to exercise (although that for me is just getting up and down the stairs and doing wrist circles!) There are things to read such as this…. (I haven’t)

I follow a really inspiring person on twitter and Facebook who is paralysed but is so positive and posts about mindfulness and he is worth checking out!

https://m.facebook.com/TheMovingRoad?_rdr or follow him on twitter @themovingroad.

The last part of this blog are not my own words but my husband Joel and I work as a team and always have; and this illness has done nothing but bring us closer together. When I posted on Facebook that he was doing this talk, many of my friends wanted to listen too; so we have decided to post the transcript of the talk below for you! I am so proud of him for speaking out.life as it is now is just as hard for him, if not harder! He has to see me in pain and can’t do any thing about it. I thank him so much for raising awareness among his colleagues, of not just how this situation has affected our family for MHAW, but how he, has amazingly maintained his senior role without letting anyone down and has in fact, continued to perform at an extremely strong level and then comes home to see his wife broken in pieces by the pain racking through her body. His strength and resilience are awe-inspiring and I hope that some of his colleagues that listen to his talk feel that they can comment on some of ‘laughing while you’re crying’s’ posts.

3: Joel’s speech to Lloyds TSB staff for MHAW15

Friday and the build up to and the fall out of, as well as the actual speech, was very emotional for him. He was in a room on his own and it was over a phone conference that people could dial into. It was also recorded and will be available to listen to across the whole bank but only internally. However, because of our synchronised feeling about sharing, as explained earlier, he has written down his speech and sent it to me. When I read it I cried; it brought home to me how much I’ve lost in this battle, because I don’t tend to think about it. It even made me wonder if I’ve talked much about what I did before I was ill, on my blog. This is because I focus on positives all the time and only think about what I can do! Some of what he has written could have been my words exactly. I have edited only slightly so that it doesn’t sound like a conference call anymore!

“* I will talk today about coping through sustained crisis and the emotional drain on mental health that living from day to day has on me and my family.

* I have responsibility for the data and business built systems across critical customer facing operations, supporting pan Group Operations on points of technical expertise and insight. This is a very demanding role, and I have a world class team around me in delivering what I do.

* I am happily married to Laura and we have two great boys! Zeke and Luca who are 11 and 9. Laura is a Primary School teacher and throughout her career we have all supported her in what is more than an all consuming vocation; where education is constantly in the fore of her mind. She is bright, energetic and driven- a real inspiration to a lot of peers and colleagues alike.

* Our lives have been hampered over the last 7 and a half years somewhat with what Laura was diagnosed with as chronic migraine. This was then episodic and typically resulted in weekends of dark rooms and quiet times.

* This all changed dramatically in January of 2014 when Laura suffered an episode which has since not gone away. She has subsequently been diagnosed with a rare brain condition called intracranial hypertension; where, in her case, the blood flow can get into the brain at normal pressure but cannot escape, leading to increased pressure and all of the following symptoms:

•  lack of mobility; Laura is housebound, and virtually bed bound. We use a wheelchair when the pain subsides enough to venture out to a quiet place.
• Aversion to noise and light
• reduced cognitive function; she is confused easily and can’t sustain a long conversation without increased pain

* You can imagine this has been, and continues to be a tough time for her, especially as the only potential treatment is yet to be approved in the form of pioneering surgery. She basically manages on a cocktail of very strong drugs, ice packs on her head and as much rest as the pain allows. This has left her disabled, and the rest of the family basically coping as carers-hence why sometimes it is a little tricky for me to balance work and home commitments.
* The reason I agreed to share my story with you all is to do with the very real link between coping through crisis and impacts on mental health. I would like to talk a bit about being aware of the signs of a mental struggle and difficulty, how we manage, and most importantly how we choose our mindset in battling through.

* One of the things I have been keen to do is practice mindfulness and setting the mindset for the day. It takes as much energy and effort to be positive, focused and driven to succeed as it does to allow negativity and failure to defeat you. To set my mindset I have to be aware of my behaviours-how are they impacting on others, how am I coping with the challenge, what are the telltale signs of falling to the more detrimental side of the knife edge we walk every day, and coaching myself through moments of anxiety; clearly brought on by the worry of living with pain, pressures of parenting, caring, household and career. I used to notice sometimes that my speech was affected, the feeling of a tight band of pressure around my chest, and a struggle to understand everything around me. At times like this, I focus on breathing, giving myself the time to calm down, and shrug my shoulders down- the mute button on my phone is perfect for this, though I may well look a bit odd in the office! I have been able to significantly reduce these episodes since accepting that I am struggling, and we as a family asked for help. I have had great support from my team and line manager-and I am particularly proud that I work for an organisation who values me enough to allow flexibility in expectations-admittedly I still have a few of those early morning calls-but the boys are great at tolerating my work while I drive them to school!

* It helps tremendously that we now have a PA who supports Laura with the simple every day things-and this reduces the worry and stress for me as the little things like washing or sweeping the floor aren’t what I am trying to catch up on at 10pm once the kids and Laura are in bed!

Laura is an inspiration to me and our kids-she is in constant pain but tries still to help and maintain as much normality as she can. One of the really powerful things she does is write a Blog which I have shared with you today. She spends the time debilitated in the house researching and reflecting on experiences of herself and others in chronic pain; and publishes her writing online. Her whole ethos, and that of the family as a team is one of positivity. We don’t focus on what we can’t do anymore, but on what we can do, and what achievements are possible within the confines of our circumstances.

My 9 year old boy Luca takes on the role of coach when encouraging Laura to crawl upstairs on the days she has made it to the lounge-a 15 minute journey-as every step of the way he encourages and celebrates. Zeke is the reflector and pragmatist, he is the voice of reason when he tells Laura perhaps she needs to take some medicine or lie down.

On the point of mindfulness-we do something a bit twee, but it works. Every day we look to reflect on the positives for the day, write them down and put them in a jar. This galvanises the positive for the day, allows us to reflect, and on the really dark days this can be more than a little tricky. On those days, we can get a ‘positive’ out and be immediately reminded of something to lift our spirits. Laura picked a lovely one out the other day after a brutal period of pain and borderline depression: ‘sitting on the sofa with mummy’; a real reminder that we don’t have to always do the huge things to make a difference to our kids.

* I really wanted to share my story to basically say that we are all strong in our own way, adversity tests us, but that positivity is something you work towards. The techniques that help in managing my well being are:

• setting a mindset of achieving rather than focussing on what we can’t do
• Working as a team-being prepared to ask for help from GP, line manager, family, friends
• Being aware of when behaviours aren’t what you’d expect of yourself; seeing this as you would a cut or a pain and seeking advice and help. Mental illness is an invisible condition-that doesn’t make it any less real-be aware of those telltale signs and be prepared to ask for help
• Most of all-talk-be prepared to accept that we aren’t all invulnerable. “

Joel’s talk received a standing ovation around many different offices where people were listening in. He has had fantastic feedback from those listening and from his direct management. The recording will be available soon for anyone in the bank. Numbers are rising on my Facebook page and there has been a lovely comment and lots of likes on the posts. I hope that reading this incredibly long post has shown you why being part of such a great team-my family-and having such a strong relationship with my husband is what helps me to stay positive and gives me the courage to get up every day that I can. And, believe me, I do know how luckily I am to have that!  Stay strong!

You’re giving me a bit of a migraine and other wrong uses of adjectives…

Last week I wrote a piece on mental health and chronic illness and how they are often co-morbid. Whilst researching the piece I found this striking image and after trying to fit it in to the post, decided that it was addressing too many issues on top of the ones I was already addressing. However, it’s been bugging me ever since and despite having had a terribly painful night with little sleep, I need to get this bug-bear off of my chest.

I really identified with the ideas in this picture and have often found it really irritating to hear people discuss mental health issues in this way; using adjectives to create the impression that somehow they are not responsible for their behaviour. It got me thinking…

I bet someone that says “you almost gave me a panic attack” has never really experienced the frightening heart-racing, sheer and utter hysteria that comes out of nowhere for no real reason. I have. It’s scary and it’s debilitating and I’ve had it diagnosed by a medical professional.

Does someone that say “I’m a bit OCD mean that they’ve been diagnosed as being on the lower end of the spectrum? (I doubt it)  or does someone that say “you look so anorexic” to a young girl think of the power of those words and the actions she might take because of it?

Do you ever have a really bad headache and say “I’ve got a bit of a migraine?” Loads of people do. That’s part of the problem you see, and why there is such a stigma around migraine. A migraine isn’t just a bad headache. You shouldn’t say you have a migraine unless you’ve been diagnosed by a medical professional such as your GP or a neurologist. There are strict guidelines for diagnosing migraine, just as there are for diagnosing bi-polar or OCD (which thankfully I do not have) and by stating that you have a migraine without being diagnosed with them only adds to the ‘shame’ of suffering with them.

Now, I’m very lucky in that I don’t have people in my life that don’t believe that I’m unwell; however as you know my story is complicated by this whole IH and restricted venous outflow malarkey. But so many people are stigmatised for having migraines when they are chronic and are affected by them for more than 15 days a month. As you can imagine, this leads to missed days at work, cancelled meetings and lack of social and family life. People that are affected by chronic migraine are often bullied in the workplace; lose friendships and sometimes even have family members turn their backs on them. The reason for this? Because they think they are making it up! This happens to loads of people in the IIH community too. I see it on loads of posts on the Facebook support group, where people have to try and convince their family that they are really unwell and not just trying to get benefits. I can assure you, that it’s hard enough to get the help you need when you are housebound, it’s not easy to blah benefits anymore!

I’ll be honest; I have lost a couple of friends along the way; people who I thought were good friends, some who I’ve even supported when they’ve been ill, but I haven’t lost many. In fact I’ve gained friends through support groups and strengthened many friendships, where true loyalty and kindness have shone through! And, I don’t know where I’d be if it wasn’t for the school mums community coming together and offering to help out with lifts back from school, play dates in the holidays and even dropping in for a cuppa to keep me sane too!

It’s hard to be around someone who is ill; I get that, I can be boring when I’m tired from all the pain and  medications. I can be quite funny too though from some of the medication! I say the wrong words, I repeat myself ALOT! I forget what you’ve told me and ask you the same questions or forget to ask you about something important. And I’ve even managed to send my ‘amazing friend’ a weird voice message without even knowing. However if I’m depressed, (which I have been diagnosed with, alongside anxiety) then I can be even more difficult to be around. I guess that is why we find out who our true friends are when we are ill. There are some ideas of things to say to people that are depressed such as in this article.

I don’t normally write with a negative attitude and I hope that this post isn’t too negative but sometimes things just need to be moaned about; not because they’re happening to me but because I’m being an advocate for increasing awareness about migraine and IIH and life with chronic illness. So please don’t use mental health conditions as adjectives, please don’t say you have a migraine unless you’ve been diagnosed by a medical professional and please don’t say these things to someone who is chronically Ill:

Everyone I have met who has a chronic illness, be it IIH, chronic migraine or any other condition; fights harder than anyone to just get up in the morning. They have usually tried every ‘cure’ or tried to change their habits or their environment if they can. I know because I have tried more than you can imagine and none have made a long lasting difference for me. So as a last word on this post, I just want to say that whilst you might do things that do give someone a migraine, unfortunately we sufferers, have to try and control our own triggers and can only ask you politely to not wear that perfume, or talk so loudly or to keep the blinds closed. However, if you do hear us say we that we are in too much pain to come out with you or to go to work, then if you just say that you believe us you will make our day one step easier to get through.

Thank you for reading this post!

Mental illness-the light at the end of the tunnel??

With every story of chronic illness comes a side order of mental illness. Some people, of course handle their situation better than others, managing to hold down a job and healthy relationships etc. For some however, the struggle to find that ’light at the end of the tunnel’ that everyone keeps talking to them about, from the minute they’re signed off with a medical certificate for more than three weeks, becomes a constant battle with lining up the pills in pretty patterns next to the vodka bottles. Of course there are many of us that are in between the two ends of the spectrum.

The past week has ‘Stop the Stigma’ week; a week aimed at raising awareness of mental health issues set up by a small group in the US and it has spread via social media. I’ve decided that now is the time for me to write this blog although it has been fluttering in the cobwebs of my mind for a while. https://www.facebook.com/pages/Mental-Health-Awareness-Week-2015/1392190864384089

This will not be an easy blog entry to write and therefore I want to warn you now that it may not be easy to read. If you are a stranger, then I hope it makes you stop and think about someone that you do know with a chronic illness and maybe make you reassess how you may respond to them or interact with them. If you’re a friend or family member then I’m sorry if anything I write in this blog is upsetting; however, the point of this is that by sharing my story, my vulnerablity, that more awareness of mental health issues are raised. It will take courage to write about some of the content of this post, however because I know my children can google this blog anytime they want, I will have to use some self censorship. I am terrified of what starting this blog is going to bring up and how I’m going to handle it but for now I’m going to sleep on the ideas that are starting to formulate……

Firstly, let me say that I am not an expert in mental health issues, nor have I suffered particularly badly with them myself. I had a brief spell of post natal depression where I suffered with panic attacks; these were diagnosed by the midwifes,  as the attacks started whenever I left my second son in SCBU and went away from the hospital, even for the briefest time. The diagnosis was a relief, because they thought it might have been a pulmonary embolism due to complications after delivery. However, after we all got home the symptoms continued and worsened to the point of my GP immediately referring me for counselling. I developed a good relationship with my counsellor and her technique worked and I was soon cycling to the appointments and rebuilding myself. I was given the standard NHS 6 sessions but that was enough for me to get my life back on track so that I could look after my children and be a happy wife and mother again.

That was my first personal experience of mental illness but I grew up around it even though it was something that wasn’t really discussed. Well, I remember being told about things that had happened, those things still haunt me now, but not understanding them. I won’t go into these events as I don’t have those people’s or their families consent. I can however tell you that I remember some incidents making me feel like I should be able to do something to make it better or ‘fix it’ or that it was somehow my fault. As I’m sure you can imagine I am now a ‘fixer’ and have a very high tendency towards feeling guilty. Interestingly, a counsellor I saw at the beginning of this 16 month long nightmare of a migraine/headache/iih thingy, told me that guilt is “being angry at yourself because you can’t be angry at anything or anyone else.” I still feel guilty. I probably even feel a bit guilty that I never went back to see that counsellor. The thing is it left me in bed for 3 days afterwards in agony from the journey (25mins) and the talking (1hr), so I deemed it a pointless exercise in the journey to my recovery.

So you can see that I have already experienced counselling and have found it a useful tool. I think that everybody with any mental illness should reach out for help because there is a lot of help out there. I am very lucky, in that my GP practice, has a counselling service that runs from it’s practice and that because I am a teacher I also can access counselling through my work occupational health support agency.

However, since my first encounter with the counsellor I decided that I can do this without any extra help! My support group friends cannot believe that I am not on anti-depressants! You see, most people that experience chronic illness, also suffer from mental ilnesss. In fact, it is a common belief that migraine is actually caused by stress. There is actually not enough evidence to know the cause of migraine, as despite it being in the top 4 of the world’s most disabling conditions, it has very little money spent on it to research causes and cures. Stress can be a trigger, just as a post stress comedown can be (this is one of mine) as well as chocolate, caffeine, tomatoes etc… In fact, anything can be a trigger. It is an individual thing.

There is also very little research done on IIH but for a different reason, this time, because it is so rare! However, on forums and the support groups, it is clear that most people find that stress raises their pressure and therefore increases their pain and other symptoms. In fact, crying and laughing often come up in forums on migraine and IIH sites as discussions about how these acts can increase the pain. I have looked on the internet for research with regards to stress and IIH and cannot find any. I understand it to be the physical impact of raised blood pressure, increasing stress on the vessels to the brain could worsen symptoms of IIH.

So you can see that there is a link between worsened symptoms due to increased stress but what about stress causing these conditions. Well as I said, it is unknown what causes migraine and it is the same with IIH. IIH stands for Idiopathic Intracranial Hypertension and Idiopathic means ‘of unknown cause’. However, many people both professional and otherwise still believe that stress causes migraine and IIH. When I was first unwell with migraine, the first neurologist I saw suggested that working 4 days was too much for me. However, a couple of years beforehand I had managed to work full time with low level migraines and in a school where I was very unhappy and cried most days on the journey in to school. (I probably should have been signed off with stress but still….) I soon left the school and went to a school where I was really happy and that’s when the migraines started to get worse…. There’s no telling is there. Anyway I soon had to encounter an Occupational health assessment. I spoke to the occupational health nurse over the phone; her exact words were “you couldn’t possibly be off work for 3 months with just a headache”! At this point, I’d been diagnosed with migraine and that had been written on all but my first sickness certificates (the first said headache). She really tried very hard to diagnose me with depression in that phone call, telling me that my voice sounded monotonous and that I didn’t sound ‘like a teacher’?? If I had been depressed, I would have just admitted it, it’s not something to hide and that’s what I told her but she took a lot of convincing that I really did have unbearable headaches that meant I couldn’t walk for more than 5 minutes and that was the reason for me not sounding full of the joys of spring! My neurology nurse told me that I should “talk to my GP about my mood” when I burst into tears of frustration when yet again I was told that I needed to give the pills a bit longer to work (surely 6 months is long enough to know that something is not having a positive impact?)  I have even experienced this attitude with the headache specialist, whom I begged for months to see, she suggested that even though I wasn’t working there was still a lot of stress at home; my children and all the housework. I couldn’t believe it. I had fought so hard to see this woman and her advice was to not get stressed out by doing housework (which Joel was doing at the time as well as working anyway); my kids (who make me want to get up and fight every day, who tell their friends they have to be quiet when they come to our house and are always complimented for being the most well behaved kids our friends have looked after)! She also told me not to eat chocolate, cheese or caffeine. Do people seriously get all the way to seeing her and not have tried that one already???

On the support groups I’m on there is often talk of depression and cries for help. It can be quite scary when someone writes that they are going to end it because they can’t take the pain anymore. The thing is we all get it. We all know what it feels like to want to get rid of that pain so badly we’d do anything. Of course, most of us would never do it, but that black dog of depression looms over us and invites us to take the easy way out. However, luckily those support groups on the whole are thereto help is get up and fight each day. The groups that have people constantly posting photos of their operation wounds and groups with passive aggressive members in are now not on my follow list. I simply cannot be dealing with groups that are constantly negative. I need to be in groups that support each other through bad times, but will them through the good times and applaud every victory each member has! A group where a member wants to post that they have had a pain free day is what I call an awesome group! We should be there to will each other on to health but also recognise that everyone may not be able to get back to health and be there to support them just as much.

Now, this is where I need to point out that I have never thought through an end plan ever! My husband and children are too amazing for me to be drawn in by those thoughts for long enough to actually plan anything. But, I have wanted to just get that pain out of my head somehow. When the pain you face almost daily, comes close to the same pain you suffered in childbirth then yes, you want an end! In childbirth, you get gas and air and an amazing baby and a heap of endorphins; I just get never-ending, vicious, ice-picking, tunnel-bearing, vice-busting pain!

So, how do I make sure I’m not constantly brought down by the car-crusher I like to think of as my evil nemesis! It’s there with me constantly, so I have to go into battle mode, no sleeping on my laurels. And it’s not just me. My family are affected too, aren’t they? We have to raise an army together. Luckily, we’ve always been a good team. Luca is the ‘defender’: He checks on me, he stands at the top of the stairs and coaches me up every teeth grinding inch of pain that is called the nightly mountain climb. He has embraced our family positivity jar and can always think of something to say and write when we share our positives at the end of the day; we don’t always write them down but when I dip in the jar I often pull out one of his that says ‘giving mummy cuddles’. Zeke is the ‘logistician’ always ready to suggest an easier way of doing things. “Why doesn’t mummy go upstairs now, when she’s less tired?”. He likes to know the facts of what is going on; he took in everything on the detailed skull picture we showed him when we tried to explain my warped mind and he often asks when the operation will be and what will happen. He likes to know the facts and finds it hard that we can’t answer all his questions. They have both got music to keep inspiring them, swimming to keep them fit and have been registered as young carers, so will be able to attend meetings and days out in the holidays with children in similar situations.
Joel is the ‘commander’; bold and fearless. He has taken on running a household, being my carer, being a fabulous dad and still holding down a high powered job with almost sheer ease. There have been a few bumps and, if it hadn’t been for Nina coming in as ‘adventurer’ ready to put her hand to new things and throw herself fully into the McKee family, we may have had a crumpled leader but he still holds his position well and keeps his sanity through his music. He has joined a band that gives him his own creative time and space. Now all we need is to get him back out on that bike! I am a bit of a ‘mediator’; often taking that role within the family and coming in to do my parenting bit when I can, often when Joel is at the end of his tether and when I should have started helping earlier. I have found new things to interest me and causes to fight by joining Mission Migraine and sharing my story for awareness. That has led me to realise the power of the internet and I share my journey about suffering with migraine and being diagnosed with IIH through this blog and more recently by starting the twitter account for Mission Migraine @migrainemission. Creatively, I have started to build myself back up again by beginning to make jewellery again. Exercise wise, I still love my yoga and Pilates and meditate daily and try and do simple exercises in my chair or bed when I can. Personality types taken from 16personalities.com

As you can see, we do a lot of positive things to try and keep healthy minds individually and as a family but we are all aware of the need for someone else to talk to outside of our situation if the need arises and I may talk about that in future blogs. We have done all these things as a natural process but I was interested to find this poster when searching for pictures for this blog on how to have a healthy mind.

Yes, we are living in survival mode but we are gradually rebuilding who we were before this illness came to join the McKee household. I want to say that my illness does not define me and I hope if you have a chronic illness that you can say that. Unfortunately, they do become all consuming when they take over every aspect of your life and relationships. I am gradually beginning to rebuild the Laura that was here before this illness came in and shook me to the very core, however, this Laura will never go back to who she was before. I think that that is a good thing. I have learnt so much about life, relationships and people through joining support groups, developing friendships, exploring empathy, deepening understanding of who I really am and who I want to be (I’ve had a lot of time to think), and developing love on a far deeper level than ever before with my husband who has guided me through the hardest moments of my life so far. All I can think is that this stands us in good stead for what is to happen in the coming months and that we have all these support networks in place already for when we need them the most.

Thank you for taking the time to read this post.

A Smile is the prettiest thing you can wear!

I’m often asked how I manage to stay smiling whilst I’m in so much pain. There is only one answer for that and that is my family. My best friend and my rock; my husband Joel, and my two amazing children, who have had to learn to adapt and change with this monster illness just as much as I have. I love this quote below from the very wise and inspirational Maya Angelou. I have to say that even on a bad day, like today, when I’m stuck in bed; I still have a smile for each of the three loves of my lives.  

We went out yesterday you see; we had family fun. I took maximum oramorph and popped in my earplugs and we smiled and laughed as we did normal stuff together. Even me being in the wheelchair and/or using my stick seems normal now. I posted some photos on Facebook and had so many lovely comments about our lovely smiles. I have such immense support from such a wide community on Facebook and they all know by now that I smile through the pain. In fact; one of Mission Migraine’s awareness campaigns was pictures of us smiling through our invisible illnesseses; so I’m in good company and am buoyed on by my fellow missioners!  

As I am writing this blog entry, a parcel arrives from my fantastic aunt and godmother! It’s our Christmas presents, just in time for Easter! She may be a little crazy😜 but has always been my inspiration from a young girl. We developed a special bond when I was a teenager and we have kept that going since; our relationship has become even more poignant now and although we don’t speak as often as I’d like; we both know that we are there rooting for each other. She has suffered with chronic illness since childhood and has always dealt with it with verve, dignity and humour! She has always amazed me at how she can sparkle like a gleaming diamond after all the bashes and knocks she deals with. However, she goes beyond that and helps others, inspires youngsters and remains a confidant for so many loyal friends (of which I now also think of her)!   Sue Rush: this one’s for you! 

Anyway; my present was a ‘happiness kit’. Talk about perfect timing! I have put it in the pot next to my bed with my broken angel and precious stones and my ‘Never Give Up’ scroll! That way I can look at it every day and remind myself of yet another reason of why I should stay happy and keep smiling through the pain.

I know I put lots of quotes into my entries but there is one that stays in my head all the time. That is ‘that you can make yourself miserable or make yourself happy, the amount of work is the same.’ A friend I’ve met online whom suffers daily asked me the other day “why don’t you cry all the time?” My answer was that it simply is down to the fact that I get used to living with a certain amount of pain, it hurts more to cry and that I am so lucky to have such a special relationship with my husband who happens to also be my best friend! If I didn’t have him or my children to inspire me; I would cry a lot more. But it’s more than that. I have so many friends that have been loyal to me  and haven’t turned away from me because of my illness, (I’ve lost a few) like many do to so many chronically ill sufferers. Many of them even call me an inspiration; which I find hard to understand and have been questioning a lot in the last few weeks. I’ve forged stronger friendships with people who were already friends but, now that they can let themselves into my house (using a key safe), have seen me in my bed looking pretty bloody horrendous and have ended up having to make their own cuppa when they get here; I have a whole new set of best mates. And then there’s the amazing friends I’ve met online in support groups. The friends who don’t just constantly post pics about surgery or moan about certain doctors or just complain about what is going on in their lives. Oh no! I’ve met people who completely understand 24/7 pain, feeling like they are on a boat constantly and who also wear shades indoors! They tell me off when I need to be pulled out of the rabbit hole (oh yes-I’m not smiling constantly; that would make me a maniac!); pat me on the back when I’ve rung back the scary doctor’s secretary; send me virtual hugs and get well wishes on the really bad days; call or FaceTime me for a giggle or reboot; share with their friends what I’m writing here and most importantly support me every single bloody day I have to get up and face the world, again, in pain, still waiting…… 

They make me appreciate that I still have that day to share with my friends and family even if I am in pain. Because there is always something positive in every day and however bad each day is, you can dig deep and find that one tiny thing to be grateful for; that one thing that will make you smile! I’m not trying to be an inspiration; I’ve never set out to be one and I don’t see myself that way. I am so shocked when people say it to me still but I think that I am starting to learn that the reason people feel the need to say this to me is; that I show strength (which I remember my reiki practioner asking in early 2014 what I’d learnt about myself through going through the pain and I’d said that I hadn’t known how strong I was); positivity; realism and gratitude. All I want to do is share those things with others that are hurting and help them to fight through their pain and illness and to raise awareness of others hurt/illness be it migraine, iih or even other pain related illnesses. I only ever share photos, quotes and information to raise awareness; not sympathy!

So if you’re reading this today, whether you’re well, ill or in pain (chronic, or you’ve just stubbed your toe); think of something that will make you smile. Something someone said or did; something you achieved; a cuddle someone gave you or a smile someone passed on to you. At the end of the day, in this world; there is always someone worse off than you. They might be sitting next to you on the bus or they might be on a different continent but we never know the journey that other people are making and we never know what someone else might be going through. Let’s face it:

OR if you look at it from your own point of view and you are ill or well; still push yourself to the limits of what you can handle. Don’t sit at home waiting to feel better, be wealthier or more ready. Life is too short. Yes, going to Somerset for 3 days may have put me in bed for a week but I pushed myself within (maybe) my limits and made amazing memories and although you may not call it crazy; it was pretty ‘whatever’ when I feel like I do. I still don’t know my own limits; I still did too much yesterday and ended up nearly puking on the way out of Sussex Stationers like some drunk old bird who can’t control herself! But a few diazepam and a bit more oramorph later and a whole day of short chunks of writing you have a blog entry. One hell of an achievement I’d say. 😃😃😃😃 (don’t I just make you sick?) 😉 don’t wait to do that bungee jump, dye your hair grey or make that visit to see your Nan!

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The mysteries and marvels of medication

Well I am just over a year on this interesting journey and I have done a full circle of medication. This post is about the trials and tribulations along the way!
My inspiration for this post is down to sitting with Nina, my personal assistant, (still can’t believe I officially have a pa!) on Monday and showing her what needs to go in the 2 weekly pill boxes I have. One for upstairs and one down. It had been suggested that I got one of these ages ago but I refused for months, as it just made me think of old ladies! It didn’t fit in to my denial stage of this whole living with chronic illness thing! Anyway in the end, I agreed and bought a nice pretty coloured one!

It is actually quite handy to know that you don’t have to keep running (well in my case, sending a runner) to the chemist and pleading with them to talk to the doctor’s secretary to convince them that I really need that drug right now. It even means that I don’t double dose or take the wrong tablet at the wrong time. I learnt my lesson about that way back in the beginning (6years ago) when I woke up in the morning, opened the medicine cupboard, started taking my tablets at the same time as making sure we all got out of the house with two under 5’s, and I accidentally popped an amitriptyline💊. Oops! I had to phone in sick for the day as a) I couldn’t drive and b) imagine being on amitriptyline with a class of 7 year olds😬😬😬😬And I was only on 10mg of the stuff; I’m now on 75mg!
So, anyway, it only took 6 years to convince me to take the bold step into organising my prescribed pills and we haven’t even talked about the alternative stuff that I’ve been prescribed by my cranial osteopath!!! Now Nina is going to look forward to emptying blister packs (they’re called blister packs for a reason-who knew you could get blisters from pill packets?) every Monday for me and so I’ve written her a little list to help her!
Upstairs pill box
1x omeprazole
1x prochlorperazine (stemetil)
1 x naproxen
4x diazepam
6x pregabilin
1x 50mg amitriptyline
1 x 25mg amitriptyline

Downstairs pill box
2x prochlorperazine
3x naproxen
2 x pregabilin
2x diazepam
1 x zinc
2 x vitamin b12
ThIs is per day by and doesn’t even include oramorph or metachlopramide that I take as needed or the fish oils, vitamins c and d that I also try to remember to take daily! I wish I’d taken a picture for you!
I do have to set reminders on my phone of when to take what, so I decided to make myself smile by choosing songs with apt titles as the alarm; for example: Diazepam has been Kate Bush’s ‘Moments of pleasure’ and amitriptyline is currently Laura Marling’s ‘Darkness descends’ and my favourite by far is ‘High’ by The Cure for my oramorph dose that I now take half an hour before trying to ascend the stairs (an attempt to try and avoid me collapsing at the top again)
So I’ve told you about the actual medications now I need to tell you of the mysteries and marvels a.k.a SIDE EFFECTS

Let’s start with naproxen-no drowsiness with this one-yay!!! However, it pretty much eats the inside of your oesophagus and gut and means I have to take it with food (good excuse for chocolate biscuits in the middle of the night) and then I take omeprazole which is a proton pump inhibitor and helps to protect the lining of the gut and stomach. The thing is, naproxen works wonders for my pain and I’m only planning on taking it until this operation finally sorts me out. The neuros I’ve seen have said they don’t want me on it because of rebound headaches! Sometimes the ones that seem least harmless are the ones that do the most damage though and I’m on 1000mg of the stuff each day-yup, you read that right-3 zeros! I am aware of the damage and I’ve had the lovely experiences of endoscopy and colonoscopy already due to being severely anaemic after being on diclofenac for many months. Luckily it was all clear, so hopefully I’m made of strong stuff but I know many who haven’t been so lucky and have now got problems! Not nice!
Oh, how I love oramorph (the other drug I’m not meant to be taking because of medication overuse headaches). However my awesome GP just ignores that advice from consultants and prescribes me a low dose; because if I didn’t have it, I’d be stuck in bed every day, in the dark, unable to move, talk, cuddle my kids and would need someone to help me to get on a commode etc etc!) I hate that I have to take the stuff but I love how it takes me to a place where I don’t care about the pain anymore-the pain hasn’t gone, I’m just in happy land.

My children told me the other day that they like it when I take oramorph, because I stop being grumpy and laugh a lot more! That says it all doesn’t it? But seriously, however much I love the stuff, I only take it so that I can get out the house once a week, to get up the stairs to bed at night and if the pain is so bad it wakes me up in the night and I can’t control it naturally eg using ice and meditation techniques. I don’t take it on a normal day of being stuck in the house, maybe having a friend pop in for a cuppa. I rarely take it even when the pain is awful and I’m just at home; until Joel looks at me, resembling the lightest colour on the whites dulux chart, and says ’just take the bloody stuff and stop being stubborn’! However, I’m trying to keep my family life as happy as possible and go out with them somewhere for at least an hour or two at the weekend and that involves oramorph; as just the steps out of the house and into the car, ramp up the pressure in my head.
Then there’s the medication that cause constipation. Yes, I am now going to talk about constipation; you have been warned! Amitriptyline and oramorph combined means…….

This is where the magic of prune juice and the occasional bit of senna come in handy and I stay on an even keel. Let’s just say that before I worked that out, going to the toilet with a vice tightened round your head and the pressure of straining= NOT GOOD!
Let’s move on quickly…. I mentioned amitriptyline. I’ve been on this for 6 years now. When I first started on it, I would fall asleep within 10 minutes of taking 10mg but after a few months I got used to it and was able to get back to normal working hours. Each time my symptoms got worse it was increased by 10mg and I was able to stay awake for an hour or so after taking it and was able to teach on 30mg and do a good job! I lived a pretty normal life and drank the odd glass of wine but did discover that it didn’t go so well with cocktails and nights out!

Alongside the amitriptyline I took pregabilin; both of these drugs being used to try and prevent the pain rather than act as pain killers. I worked as a teacher with 300mg of this a day in my system and even though they said, it may cause drowsiness, I never felt particularly drowsy but I did suffer from dry mouth but I’m very happy drinking water anyway so not a problem. However, when I got my urgent referral through to see a neuro in Jan 2014; he said that I had been on pregabilin for too long (3 years) and that I needed to wean off it and then start a drug called Pizotifen as i had tried pretty much every other preventative medication and all migraine abortives (triptans, ibuprofen, paracetamol etc etc…) already. My gp was sceptical as this is an old migraine drug, not often used as the side effects can be hallucinations, putting on weight etc… but we followed the plan and I weaned off pregabilin (took about 6/7 weeks) and went on Pizotifen starting at 0.5mg taken at night. The side effects were not too bad so we continued to titrate up to 3mg This ONLY took 6 months ! I phoned the neurology nurse weekly, in tears, saying that it just wasn’t working and being told every time that I had to give it more time as it was still early days!!!!! It took me this long before I finally managed to force my neuro’s hand, and he begrudgingly referred me to the headache specialist that he had promised in the appointment I’d had with him in April 2014! Anyway, when I had my appointment with the headache specialist, who was nice but still would not consider that I could have iih as well as migraine, immediately told me to wean back off Pizotifen and back onto pregabilin as that had worked for me before!!!! I feel like I’ve just gone full circle and am now back on the same preventatives I was on in January, on just higher doses. What a waste of the best part of a year!!!
These drugs both have a huge list of side effects: drowsiness, headaches, dry mouth, nausea, dizziness, constipation, paraesthesiae and many, many more. I have been much more sleepy with the increase of pregabilin and am concerned about increasing the dose during the day. I now get very cold extremeties, almost like Reynauds disease, and I have got my first chilblain again after not getting them the whole time that I wasn’t taking pregabilin. They hurt!

Reading these side effects and then comparing it to my symptoms has made me seriously consider stopping all medication many times; I can assure you! HOWEVER, I think it’s better that I am !

So the confusing thing is that I have brain fog as part of my iih condition but I also have it from all the medication-yay!

So living with me is interesting for Joel and the boys. On Sunday we were on our way to a friend’s birthday in an Indian restaurant (yes I made it out-fuelled by oramorph and diazepam) when I realised that a) I had removed myself from the Facebook conversation and so didn’t know where we were meant to be going and b) said that there can’t be that many Indian ‘warehouses’ in the village we were going to!!! Brain fog moments can be hilarious and it’s great therapy sharing these with other sufferers on mission migraine; hearing others stories of saying turn left at the ‘rainbow’! (You know who you are). But it’s also incredibly frustrating for my husband, who has the same conversation with me three times or tells me something four times and I still don’t remember. Joel has said that he has noticed my short term memory has really deteriorated recently and quite dramatically! And that’s not even including the times I’m on oramorph! My friends are learning to read pain+morphine induced texts and status updates.
You may have noticed that even though this post is rather long, as usual, that I haven’t explained any of the other drugs. Diazepam, metachlopramide and prochlorperazine all make you drowsy and are for muscle relaxation/anxiety, nausea and dizziness. Just these drugs alone mean that I cannot drive; diazepam has just been named as a drug that should not be taken when driving and if caught you could be charged with drug driving!
The vitamins have been prescribed by a therapist who has checked that they don’t interfere with my medications. Even on all of these drugs; my pain levels are still a daily 8 out of 10 on a pain scale as long as I don’t do anything-hence having my own personal assistant in the form of the lovely Nina. This is why I have the oramorph as that is the only thing that gives relief when it gets to a 9/10! (Worst pain you’ve ever had).
I should probably not even be on Facebook or texting when I’m like that but knowing my friends are standing by me and willing me to stay strong, is what keeps me going! You may have noticed there are no anti-depressants on this list. Don’t get me wrong; I’ve asked for them many times, but my GP has recognised that I only struggle mentally when I’m in so much pain that I can’t move or when I get disappointing news from the consultants about how much longer I have to wait for this operation. I’m glad he has recognised this and has been wary of mixing in yet another drug to the cocktail! However, many people with chronic illness also suffer with depression. Why wouldn’t you? You’re mourning a life you once had! Which I am and so are my family!
But, I have a great support network of local friends to help me practically and a fantastic group of people, made up of those near and far; new friends and old friends; those I’ve not met from the internet support groups and those I have, or those I have spoken to or face-timed! It’s the strength and support of all of them that get me through. It’s because of them, encouraging me to share my story to raise awareness, that you are even reading this; if you’re my friend and you’re reading this, thank you. You can raise awareness by sharing, liking or commenting. If you are reading this because one of my friends is your friend then thank you for your time.
I know there is always someone there with a listening ear, a real or virtual hug and words of wisdom and encouragement! Thank you to all of you for keeping me almost sane! I love every one of you and you know who you are!