How Brain Disease Promised Me Quality Life Opportunities

How Brain Disease Promised Me Quality Life Opportunities

I’ve been thinking alot about life recently. It’s been 5 years since I was diagnosed with a an atypical presentation of a rare brain disease; Idiopathic Intracranial Hypertension or IIH. It’s also been 3 years since I was medically dismissed from my teaching career and I never dreamt back then that I’d still be mostly bedbound and so sick after 6 major surgeries.

But, how could I have known 5 years ago that this disease would have such unforgiving consequences for impact myself, let alone Joel and the boys? We never considered that this disease would mean reconsidering our dreams, hopes and plans for life together.

On the flipside, I’ve found silver linings amongst this shizz! I’ve found new ways to connect with the world, my family and my own wellbeing and built an even better relationship with Joel and the boys – who’d have thought that could happen! I’d never have been able to see myself not teaching but I’ve realised that I do have other talents and other roles to fill.

So in spite of my illness turning our world upside down and inside out, I’ve realised that my brain disease has oddly promised me new opportunities. I know that sounds crazy, even for a self confessed optimist, so let me explain my how I got to this conclusion.

How do you live your life?

• Are you a dreamer –  living in a fantasy world with unrealistic ideals?
• Are you a planner – always being organised and making lists?
• Are you a doer – filling every waking moment and being very efficient?
• Are you an optimist – being confident that there’s always a silver lining?
• Are you a realist – able to accept and deal with the situation you’re in?
• Are you an idealist – sure that happiness is a state of mind; despite the practicalities?
• Are you impulsive – acting rashly and taking risks without thinking it through?
• Are you a believer – having faith in what you do or trusting that your thing is truth?

I’ve always been an optimistic planner with an organised life. Everything had a place and everyone knew the systems. I knew was meant to teach aged 5. I taught my brother in the school holidays, when he’d much rather have played cars. I planned my life as a teacher and when I got there, I continued to live, walk and dream in teacher mode for 15 years.

Joel and I met at college and we took our time getting to know each other. I found his spontaneous nature intriguing as it was the total opposite to my pragmatism. But we had a shared sense of humour and moral standing and eventually became more than friends.

I’d describe Joel as a realistic dreamer. He adapts to every situation and gets a job done but then he’ll fantasise over idealistic homes and awesome guitars. He dreams of not having to work ever again, so he can paint and play music all day and maybe study for fun!

One of the games he plays with the boys is ‘lottery dreams’ which is pretty self explanatory. They’ve eyed up many mansions, fast cars and had myriad wild dreams. I love that Joel has always encouraged them to delve into their imaginations as playing this game’s just not my bag. Well, it wasn’t!

But then I got brain disease and my thought process changed and as time went on I knew I had to reevaluate my life plan. I had to learn to be more impulsive and grab the opportunities to live on my rare better days. I had to learn to stop doing and even how to rest; in fact I’m still learning that. But I had to get real and accept this was my life.

Questioning My Purpose

Why Am I Here?

Accepting this life has been a huge deal! When I became ill I thought I’d be back in the classroom after a change of migraine meds. But that didn’t happen, I was left undiagnosed for months. When I was diagnosed, I was told treatment would be a long process but I thought I’d be back teaching after a few brain surgeries. Just like that, yep really!

I was angry about this disease for ages and had a side order of guilt and despair. Quality opportunities for me were as elusive as the hope of being pain free. I wasn’t clear what my role was anymore and all that I knew was fading; I had no idea where the end point was!

It took time to sink in that ‘long’ in this case meant marathon long; life changing long. It made me question my role and my sense of purpose was destroyed. It didn’t look anything like the life I’d planned and I had no backup option. I was a mum, wife and teacher. Brain disease had pulled the rug out from under me and messed up our lives.

Living In The Shadows

The Grieving Process Cactus

I got lost in a desert of all consuming pain and hadn’t noticed the grieving process cactus spike I’d trodden on. I ways keeling over, dehydrated, unaware that I just had to wait for the cactus to bear fruit for the sweet syrupy nectar of a quality life. I coulhdn’t even feel that cactus back then. I could only see what I thought was the fix; surgery. Read my story here.

I was living in the shadows, in danger of letting this rare condition make a total eclipse of my life. The Black Dog was snarling and snapping at my heels every day so I needed to tighten the leash. I realised that I was being sucked into a vast black hole and I couldn’t hold on much longer. I felt like I’d been left to rot but knew I couldn’t let go of the edge.

I realised I had to weigh up the quality of life I had with one of taking risks and grasping all the opportunities I could. I wouldn’t let myself succumb to the darkness so my GP sorted urgent support from a counsellor. I felt like someone had my hands and wouldn’t let go!

The counsellor pointed out the cactus spike that was stuck in my shoe the whole time! I got hold of it and let myself start the grieving process for life pre brain disease. I let my inner mid-tantrum toddler out. I needed to be heard to began to accept the situation I was in.

The grief and anger I felt meant I was starting out on an equally long journey to heal my mental pain. Joel and the boys mattered too much for me to let go so I worked out the etchings of a plan with my first counsellor and slowly I began to rise.

A Determined Woman Will Always Rise

As I began to resurface I knew I needed more to think about than watching TV and eating. I realised I had more resources than I thought and started to use those I knew I already had. Being Mummy, Wife, Teacher and Cook was enough to still feel needed. It was a start.

When my counselling sessions finished I was in a better place mentally but physically my health worsened. I joined online support groups and found myself helping others in similar situations. I made some genuine friends but I was putting too much energy into helping those who didn’t give anything back.

I guess my nature is to nurture and I enjoyed shining some light into their day. It was a distraction from my pain too but I caught myself checking my phone every 5 minutes as it was my only connection to the outside world. This wasn’t healthy and I lost sight of shining the light on myself. I needed something more than this but I was still lost.

Then one day I was reminded that I’d been going to silversmithing workshops for years before I was diagnosed. I’d loved every minute in that workshop and my toolbox was just sitting there waiting patiently. It was time for me to rise up for myself again.

Reconnecting With The World

They say creativity can transform lives. It’s known that well-being and self worth can be improved through music, craft and art. Creative therapy involves expression beyond words. However, I’d never considered myself to be creative until I picked up those pliers and the sheet of silver. I thought that this might be the perfect soul healer for me.

I taught myself to make beaded jewellery as I couldn’t safely work with the silversmith’s tools. It was a wonderful distraction from the pain and boredom. My friends wanted to support me and I started getting orders. Soon after, I realised this thing might have potential and opened my Etsy Shop ‘The Paprika Jewellery‘.

Paprika Jewellery & Accessories

Joel’s recently told me that although he was inspired by my focus he’d been concerned by inability to dream. He thought I’d struggle when the day came to retire. Ok, so I didn’t retire but I’m so glad he’d bought those silversmith workshops for me that birthday.

My first sale to someone I didn’t know was such a high. Really I had no idea how to run a business, but it was an epic distraction. I took it at my own pace and any sale was a bonus back then. I didn’t realise it at the time but I’d found a sense of purpose again.

As my self esteem improved I decided to start a blog to help me process everything that Brain Disease threw at us. I was embracing the grieving process now. My blog focussed on raising awareness of my story, IIH, and challenge the misconceptions of migraine.

People loved to hear about my journey and my blog engaged others affected by IIH. I was sporadic with my writing as it was such hard work for my brain. It still is but don’t tell anyone! Yet again I was helping others but I’d found my own sense of purpose this time.

I took a total break from everything in 2018, as I had 3 surgeries. I really needed that rest and I focused entirely on being with my family. By now I’d recognised the importance of my role as a wife and mother so I took this seriously. I realised how lucky I was to be at home every day so that when the kids and Joel came home, I could just listen to them.

If I was teaching I wouldn’t have had this opportunity so I embraced it. I’ve become the family facilitator. I’ve been able to support the kids learning and build a stronger family bond than I could have done in my old life. Now I celebrate the little things too.

Taking The Opportunities

Since recovering from my surgeries I’ve been building up my energy whilst learning to pace myself. But there’s so much I want to do right now so I’m practising matching the energy I have with the energy I need. I’m ready to grab every opportunity and achieve all I can.

I still spend most days in my bedroom as going downstairs is enough for a wipe out. I can use the opportunity to write, make jewellery and rest so I can make the most of the better days, doing what matters most; being with my family (maybe even going out) and seeing friends . I still crash afterwards but it’s worth it to be with those who matter most!

I’m focusing on my new jewellery collection and the relaunch of my shop at the moment. I’ve putting into practice the things I’ve learnt about business when I was resting. I’m excited to develop my vision of writing and creating jewellery from positive themes.

Making Jewellery and Accessories to share love, hope and positivity

The potential my writing has to empower women was a key factor in my decision to create gifts or treats which bring hope for the future. It’s a bigger task than I’d expected as I’m also giving my whole shop a makeover. I pushed myself at first but realised it was too much. So I’m practising balancing work and wellbeing to achieve my goals without overwhelm.

Whilst starting this new chapter, I was approached to write for Teva Pharmaceutical’s ‘Life Effects’ Patient support. It feels amazing to be sought out to blog alongside some amazing advocates, let alone getting paid for it (boom)! I’ll be writing a blog every 2 months for them but they my health comes first, it’s slap bang in the contract so I’ll pace myself!

My Life Effects Bio photo

When I wrote my Bio for the site I had a bit of an a-ha moment as I was reading it aloud to Joel. He stopped me and pulled me up where I’d written that I was an ‘aspiring’ writer. I want to write a book and see this opportunity to work towards that, but Joel made me recognise that I’m already a writer. Apparently a talented one at that according to Joel.

We discussed why I’d written that and I ended up unpacking a lot of the self doubt I’d been feeling since being offered the role. However I’ve now pitched my first blog idea, which went down with a 100% yes straight away 🙌. This will be my next blog and I’m so happy to be using my story to help others. Keep an eye out as I’m sure I’ll keep it on the down low.

As I’m always working towards something now, I have to plan my time carefully to prevent overdoing it. Flare ups happen and still hit from nowhere sometimes so I have to be flexible about what I do each day. As I work on both blogging and getting a business going again, I have to check in with myself so I don’t burn out from self inflicted expectations.

I’m so excited to see how my hard work for my shop pans out and to see where this writing journey takes me. Believe it or not, I’m actually daring to dream a little about both of these things. There it is, I got to the whole me dreaming bit at last! ✨

The Promise of Quality of Life

How Brain Disease Promised Me Quality Life Opportunities

A long and winding path has brought me here; to a place where I feel incredibly lucky to be surrounded with live and support. A place where I am still achieving things even when I’m mostly bedbound, a place I never dreamed I would be.

The pre Brain Disease Laura would be proud of me now. I’m still focussed but I now dare to believe that there’s more out there for me. My surgeries have lifted the brain fog enough for me to kick daytime TVs backside and do something that matters. My optimistic view on life has helped me but finding so many silver linings along this journey has been my soul food!

Questioning my role has been liberating. If I was teaching I wouldn’t have discovered other talents and explored what I have to offer. I definitely wouldn’t have had the guts to pitch my heart to the world. I wouldn’t have discovered my naturally empathetic nature and I certainly wouldn’t have felt a need to offer positivity and light with those who need it.

The lights leading the way out of the shadows

In the lights that scatter the Brain Disease trail we’ve found morsels of glue which have reinforced my bond with the boys. Ok so maybe mixing teenagers and glue isn’t the best use of a metaphor but the relationship I have with them now is more important than I ever thought it would be. Their company is the biggest reward for getting through the pain!

I know Joel is proud of me for the effort I’ve put into my own wellbeing; which is a work in progress. His belief in my writing ability is empowering and I couldn’t run my business without his bucketfuls of support. He helps me dream and believe that I can. His trail of breadcrumbs led to my hope and determination so I could make it out of the shadows.

My perspective on life has changed completely due to IIH and has opened my eyes to the amazing opportunities out there for me. Although the positives can’t undo the abrasive nature of my pain or how it wears away on all four of us; it has shown that we can still live a quality life. So, directly because of brain disease I now rise, even stronger than before.

What has changed the way you look at the world?

Join my VIP mailing list today and get 15% off your next order at The Paprika Jewellery. Get free access to my resource library & download my Free Journal Prompts with positive lines from my poems now https://mailchi.mp/e35f39e6a929/paprika-strength-of-tears-news

✋ Hey there! You could really help me out. Just one minute of your time to press that share button helps me so much! You’ll literally make me do a bed-bound happy dance. Now there’s an image for you! Go on, you know you want to! 

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!

The life of a chronic pain warrior with #migraine and #iih. My top tips for keeping a positive mindset (mostly) #mentalhealthawareness

An average day: 

This for me is quite depressing as I suffer from the IH as well as migraine, so I am in constant pain and have mobility issues meaning I am more likely to fall or faint. However the symptoms are very similar to migraine so can be difficult to determine which is which on a daily basis. I wake up at about 8:15 when the children are noisy heading out the door. My husband brings me breakfast and a migracap (an ice filled gel hat) as I always wake in pain. This is due to my trying to sleep propped up in bed to reduce the amount of csf fluid that can pool in the brain but I always slip off of them. I then take a mixture of preventative medication and painkillers and then usually catch up on both the Twitter Mission Migraine account I run and the Facebook account to keep in the loop; whilst my head is cooled by the ice. 

Then once there is peace and quiet,  I always spend 30 minutes meditating; often falling back to sleep until my carer comes at 11am every week day (or Joel at the weekend) and wakes me up with a nice cup of herbal tea. If I’m well enough, she gets my clothes out and makes sure I can get to the shower safely whilst she sorts washing and makes beds or something for our dinner etc. I sometimes need help dressing but sometimes I’m ok. She will do other jobs such as sorting my pill boxes and repeat prescriptions and drying my hair as I can’t lift my arms above my head, or sometimes she even does some ironing as well whilst she is here. She always makes sure I am wearing my lifeline support alarm button and that I get downstairs safely (on my bottom) and she carries things for me and sets me up on the sofa for the day; or of I’m in bed she helps me wash and brings me food and painkillers before she leaves at 12:30. 

Then I either see a friend for a brief visit or a have a phone chat with a friend or a dr/agency. I can only manage to talk for short bursts of time without having to take oramorph because of the pain increasing to a 9/10 on the painscale. If I’m feeling ok I might make a smoothie or make some jewellery but usually I end up sleeping again or watching TV or a film. My friends help me by bringing the children home from school; sometimes after a club or they keep them for a play and some tea. This time of day is the hardest for me and It is now that I have to start to try and preempt how I’m feeling. 

Often I start feeling sick around 4:30-5pm and this is a sign that my symptoms are deteriorating. I have to take anti-sick tablets and often oramorph and get myself upstairs before it gets too unbearable to get up the stairs. Joel normally gets home by about 5:30-6 and either cooks tea or adds a few last minute touches to the slow-cooker tea that Nina, my personal assistant has made earlier on. Nina comes back at 6:45pm to clear up after tea and put the washing away and maybe sweep up or do another quick job. This has really helped to keep Joel’s stress level’s under control as he isn’t having to try and be superman and do everything anymore!! At some point we share our positives from the day. We always find at least one thing to tell each other, even on a bad day. If we have time we then write them down and put them in our positive jar. This is great for those not so good days; you can pick out some positives and read things such as “having cuddles with mummy” or “having a great music lesson/band practice” or even “seeing ______ and having giggles and cake”! Tea is then followed by more painkillers and maybe more time to catch up on social media. I take even more preventatives at 8pm and then try and watch something with my husband before I get too tired and zonk out for the evening. 

Lately, I haven’t been sleeping so well again as we have dropped the dose of one of the preventatives at night. This is having a massive impact on Joel and I. I only slept for 2 hours last night. (I’m only editing this) and Joel was stirring the whole time even though I was as quiet as I could be. In the end I woke home to get the tablets I’d run out of and a migracap. I’m on my 2nd migracap and it’s 7:30am. I have taken all my meds early and intend to shut the door as soon as Joel is dressed and ask Nina to leave me to sleep til 12! But my GP is phoning today so I will be trying to fix this as it’s yet another mental health symptom that I don’t want as a permanent feature in my life!    

 

Hobbies: 

 I love to read but I can no longer concentrate for long enough to properly get into a book. I think this is why I have started writing my blog because I can do it in short bursts. I also make beaded jewellery with new and vintage beads. I have only recently re-started this hobby as I used to mainly make silver jewellery but my medication means I am unsafe to work machinery. I have just been making for myself and as gifts but am making my first commissioned piece and intend to start building up a collection to start selling via the internet initially and then hopefully through fairs and farmers markets one day. I also love to bake and make healthy smoothies. I can make a smoothie on my own as their is no cooking involved but I need help to bake so have only managed to make a few of my speciality vegetable cakes in the past year. Here is a picture of one of my most recent pieces of jewellery that in made for a friend’s birthday present.   

  

Medication:

 People often ask me what my treatment plan is so here it is if you are interested! 

Preventatives: Pregabilin 150mg 2x a day; topirimate 50mg 2x a day; amitriptyline 75mg at night

     

Daily painkillers: Naproxen 1000mg over 3 doses (plus omeprazole 20mg to line the oesophagus and protect               the stomach from ulcers) diazepam 4mg 3x a day 

     Prescription medication to be taken as needed: Metachlopramide 10mg as needed for nausea; Oramorph 20mg every 2 hrs up to 4/5 x a day plus 10 mg top up if needed; an extra 10mg diazepam ; and extra 250mg naproxen; stemetil 5mg for dizziness. I also take paracetamol with the oramorph as it enhances the effect. 

   Vitamins: Vitamin D and Zinc and sometimes some extra vitamin b. I’ve just finished taking Floradix as my iron levels were low but it tasted vile and so I’m going to look for another good multivitamin today with a decent iron and vitamin b level in. Unfortunately the rules in The EU for vitamins are so ridiculous that the OTC vitamins are hardly worth taking but I have got to take something and I can’t afford all my separate ones chosen by kiniesiology anymore unfortunately. I think I’d be paying out £200 a month on vitamins if I did that. I won’t give I up my Vitamin c ascorbic acid powder or my zinc though. Ever! 

 

 

 

Natural remedies: 

I use migracaps and disposable ice packs regularly and often use them on my head with my feet and hands in warm water. I use essential oils; mainly Jasmine, lavender, clary sage and bergamot. I use them in the bath 🛀 and in foot spa and in oil burner and even on my sleeves. I use special ‘gig’ earplugs when I go out of the house to help with my hyperacusis as they don’t block the sound completely. I use sea bands in the car 🚗 and wheelchair to help with the nausea and dizziness. I have a stick for balance and obviously a wheelchair for anything more than a few paces. As light is a big trigger for me, I bought myself non-prescription grey tinted glasses to wear indoors as they are not as severe as sunnies. I do still wear my sunglasses inside if I need to though 😎.  I meditate daily and can meditate even up to a level 8/9 on the painscale and I also listen to meditation music when I can’t sleep 😴.  

https://m.youtube.com/watch?sns=fb&v=PYsuvRNZfxE

Many people find binaural beats 🎧 useful for migraine but because I suffer from pulsatile tinnitus the beat makes this worse so I listen to calm sleep inducing music. (Not that it really sends me to sleep-Pinterest often does that though! 😜) I find distraction is a great tactic and will often talk nonsense when I’m in pain and even get the giggles just to stop myself from crying. It doesn’t always work but sometimes it gets me to bed, which is where I need to be! I eat a healthy diet and have spent many years trying to find food triggers and come to the conclusion I don’t really have any except MSG and caffiene ☕️. I don’t eat much wheat or dairy though and I drink about 3 litres of water a day plus a couple of herbal teas. I hope that this helps or at least interests some of you. No two people are triggered by the same thing. migraine is just not that simple, despite what even some leading headache specialists might say. I’ve been told not to take any pain relief by the same people! Yeah right! I can tell you now, I wouldn’t be writing this blog if I’d only been listening to them. 

Thank you for reading. 

Writing to ease the pain

Writing has always been my passion. I love words. Writing this blog has helped me to start to get that back and it has helped me find something that I CAN do despite the 24/7 pain. Long before all the pain, I used to write very differently. I used to write poems and have even had a couple of poems published in large competition style compendiums. A great achievement, if you only look at that in the naive context as I did at that time, and great to inspire children to write as a teacher later on in life. Many primary teachers struggle to teach poetry as all they focus on is rhyming or haiku. I loved teaching poetry and will always love to engage young children in spoken word, rhythm and rhyme. Well, during teenage and university years, when I was troubled I guess, I wrote a lot of poems and still have those notebooks now. My husband did an English degree and has always encouraged me to carry on writing but I’ve always been too busy working or being a mum; I think I may have written the odd one or two. Well, I’ve noticed that pain seems to bring out the poet in many sufferers. Some produce greater works than others of course; but, if writing helps that person to work through the cacophony of emotions that linger alongside us as we journey through chronic pain, then that is a great thing; whatever the outcome! I have shied away from writing so far, even though there has been a push for awareness poems in one of my support groups, mainly because I’ve just not been motivated to write. I don’t want to write a somber ‘this is hell’ style poem; one picture can tell more than a thousand words most of the time. I don’t want to write about how awful the pain is in an obvious way. That’s not how I write and therefore I didn’t feel inspired to write poems to raise awareness. I am sharing my poem with you today because I wrote it without the intention of it being about pain. Nor did I write it for raising awareness about any conditions I suffer from. I wrote it about hope. HOPE. H.O.P.E.

Anyway, poems written to raise awareness are great and I’m not belittling that at all. I’m just trying to explain why I didn’t write for that purpose then but I do now. Mainly, I just wasn’t inspired! This poem was inspired from a visit to a gem shop in Glastonbury where I found a broken angel. She now sits in a bowl next to my bed with a few other precious gems and a Scroll; printed with The Dalai Lama’s words telling me to NEVER GIVE UP! Hopefully this is the start of me writing poetry again as well as continuing to blog. Whatever happens next, I know there is Hope and I know to Never Give Up!

Why do I write about this journey I’m on?

When I started writing this blog just before Christmas, I thought it would be a cathartic experience that I would pretty much keep to myself and the few friends whom I had known had been supporting me on my journey since Jan 2014 and many since before then. So I started off slowly, posting links to my blogs on my own Facebook page.

I soon started thinking about how many of those people that had shown their support over Facebook; had done so, I think, because I had joined Mission Migraine in February 2014 and had gradually become more and more open about what I was going through on this open support group. The act of joining this group had changed my life considerably; I had made new friends that understood exactly what it was like to be in pain 24/7 and even better than that, they had a similar way of dealing with life like this: humour. When I first started posting in the group, it was often with humorous quotes but I gradually started showing my vulnerability and more and more of my wider set of friends and acquaintances started to show their support. I became overwhelmed with the amount of support received from my friends both those made before and after joining Mission Migraine and a few others that I had made from a few other closed support groups for migraine, pulsatile tinnitus and most recently iih.

Some of the friends I had made, showed me such amazing support when I started going through the process of being diagnosed with ih and in true traditional support group style started using words such as ‘inspirational’, ‘awesome’, ‘special’ etc. Then some of my friends got in on the act in phone conversations and cards; talking about my fighting spirit and courage and how ‘amazing’ I am. It’s all very nice to hear, but I don’t believe a word of it! I’m just dealing with what is thrown at me by writing and talking about it; showing my vulnerability and letting people in.

I started to hear such great feedback about my writing style as well as the interest shown in the brutal honesty of how I write about life when you’re virtually housebound and spend half the day in bed! I honestly felt truly flattered. I’ve always loved writing; even taking it up to A-level and leading it in schools as a teacher but I’ve never really written for anyone over the age of 7 (unless you count school reports). My initial blogs were just once a month, written when a thought came to me but often it would be one that was on my pre-prepared list that I made when I first set ‘laughing while you’re crying’ up. Then I began posting links on Mission Migraine and my iih closed support group and couldn’t believe how far my blog was reaching.
I then realised that I could tag key words and open up my blog to other WordPress members too. I was able to connect with even more people in similar situations to me and also read about their experiences and share with them. One day in February 2014 my blog had 252 visitors and I could see that this, my little bit of writing about me, was getting all around the world! I feel so humbled that the simple act of writing about how I feel about and how I live with; chronic illness, daily constant pain and a severe lack of mobility can touch so many people so easily. The responses I have had have been amazing; I’ve set off so many people in tears and that is never what I set out to do. I’ve had so many people tell me that they love the way I write and that I bring humour into stories of heartbreaking episodes of pain and indignity. People can begin to empathise with what my family are going through and the offers of support both emotional and practical that have come about because of this blog have been unbelievable! Thank you to everyone who has offered me a virtual hug or shoulder to cry on, phoned me up and said bring it on, offered to pick my kids up from school, come round to do my ironing, carry things up and down the stairs or empty the dishwasher or even just send me a note to say well done for writing this blog; it’s awesome!

I’ve only got a few followers so far as most people are accessing my posts through Facebook. I would love for some of my readers, yes maybe you, to press that follow button at the top of the page and get email notifications when I write a new blog! I’ve begun to get excited about the amount of views I get of each blog entry and I LOVE reading people’s responses to my posts or even just seeing that they’ve liked my post! I’ve got the blogging bug and am now writing at least once a week, even though it takes me hours to write even a short post because my memory span is so short!!!

Well, earlier this week I had a brainwave about setting up a Facebook page for the blog but then chickened out of using it, thinking that no-one would be interested. Then, yesterday afternoon we had a meeting with the boys teachers and I mentioned the blog when we were talking about the things we are doing as a family to try and keep positive, such as the boys having private diaries and our positive jar (see link).
http://m.wikihow.com/Keep-a-Happiness-Jar
One of the teachers mentioned that he had heard rave reviews from some of the other teachers who have been reading my blog. Not wanting to cross that parent/teacher line with Facebook (I’ve always avoided it myself) I told him the name of the WordPress page, but felt like he’d probably forget it the minute he sat down in the next meeting of the day. So when I got home I put up a status about posting the link to my WordPress site on their own pages but then I remembered my Facebook page that I’d created and thought I’d give it a go! Well, I had 60 followers by this morning just from friends and I was thrilled but I’ve decided to be brave. I have now posted the link to my page out there to the world of migraine and iih and we shall see what happens next. If you haven’t already liked my Facebook page then here is the link for you. Please do!
https://www.facebook.com/Tearsofstrength
Whatever does happen, it’s good entertainment while I wait to hear if they’ve agreed to do my operation or not! It’s still early days in my blog writing journey and what an exciting one already! I can’t wait to see what happens next!