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My Not So Secret Poetry Diary – A Date with Anxiety #copingwithanxiety #poeminspiration #mentalhealthblogs #chronicblogger

My Date with Anxiety

It’s been a tough ten days in my chronic illness warrior body, so I wanted to share with you some of the things I’ve been feeling – eek, it’s time to get real peeps!

I’m going to reflect briefly on what’s been happening to my body and mind each day. But hey, remember this is me writing so, even though I’ll be totally honest, I’ll make sure there’s a positive to everything! This is the story of my Date with Anxiety.

I keep a diary (not a journal) and use it to pace my daily activities. Randomly through the year I write little notes of my strengths and personalised affirmations. Then in the evening I write 3 positives from that day.

Friday 7th December

I couldn’t sleep last night, it’s been disrupted all week, but this was next level. The pain was intense and relentless and I couldn’t understand why. A friend visited me yesterday, which had made my day. She never stays too long and spotted when I was flagging. I hadn’t napped either so I expected knock on effects, but why was it SO bad?

At 3:30am my heart started racing and I was breathless and dizzy – losing control. This panic attack came out of nowhere!. I got up to use the en-suite and collapsed, but my amazing husband Joel woke immediately and rushed to my side. Then he hugged me tight, that hug that let’s me know I’m not alone!

I ended up taking a strong dose of diazepam, but I still didn’t get much sleep and when my carer arrived at lunchtime I was stressed, overwhelmed and exhausted. She took such good care of me and was extra gentle, seeing me so poorly. I recognised at the end of the day that I’m a very lucky lady to have such wonderful souls looking after me!

Saturday 8th December

Hardly any sleep again last night! The meditation and breathing techniques I normally use didn’t help and the day was littered with panic attacks, feeling like I couldn’t breathe. I was on full anxiety alert. Thankfully Joel was amazing with me through it all again and encouraged me to go downstairs for a change of scene.

Before going down I had a shower which was an accomplishment in itself. I still had panic rush up on me again and I just wanted to run away! But Joel guided me through it all, holding my hand I calmed down. Eventually, drained and emotional, I managed a 10 minute nap watching TV, on Saturday evening and finally got some relief.

I’ve not had a flare like this in years!

Sunday 9th December

I’ve managed to sleep much better at last, but I feel battered and bruised from the state of alert my body’s been in the last few days. I know my brain has had the acute stress response or fight or flight. This is exhausting as despite having a large toolkit for dealing with stress, I’ve struggled to access these strategies whilst in a state!

I’m being kind to myself today and have prioritised getting downstairs to be around my boys, so that they can make me laugh and help me heal. The mental bruises take just as long, if not longer than physical to heal, but I’m slowly building myself back up.

This link explains what might happen during a panic attack.

Monday 10th December

I’m still feeling fragile today, but at last my body has decided to catch up on some of the lost sleep. I’ve cat-napped all day, with a little break at lunchtime when my carer arrived. I have no idea what we were talking about but we were cackling away! Joel was working downstairs (a little cushion for me – knowing he’s around even if he’s busy) and commented on the cackling as soon as he did pop upstairs!

Now that I’m trying to process my feelings, I was brave and decided to write a poem about the feelings I experienced. It’s important to reflect on any kind of anxiety attack however you do it, but sweeping it under the carpet won’t help you in the future!

Tuesday 11th December

I finished the poem this morning when I woke up early. Most of my poems are at least started when I’m either not getting to sleep or waking early. This was an early morning finish! I love creating the poem on a lovely background, using stock photography, which is perfect for sharing on social media. I loved the reaction this poem received!

I also chose to explain a little about what I’d been exploring when I wrote this poem. However, I’m not yet used to being so open about my own mental health whilst I’m still fragile. But I’m committed to raising awareness and always think about the fact that what I write might help just one person!

I talk about my anxiety levels rising as the lack of sleep and increased pain added up. But although I’m drained, I do have a strong mental health toolkit – full of strategies that I practice regularly. I know how to use these help build myself back up. Knowing that I’m my only priority in this instance is key to bouncing back!

Well, I thought that I’d got my groove back as the week went on but I’ve struggled again the last few nights, especially last night when I managed about 90 minutes all night. Thankfully I dozed all morning, catching up a bit on all that lost sleep from pain. However, I’ve managed to keep the anxiety in a box by using my toolkit. See below…

No mental health blog is complete without a few top tips.

If you or someone you know suffers a panic attack, try these tips!

  • Exercise

Exercise is one of the quickest way to deal with the raised stress levels that come with a panic attack. My physical illness stops me from going for a run (think flight…), but I can do some bed yoga, even though I take it even more carefully than normal! Some good stretches and shoulder rolls are a great way to shake it off!

  • Talking through the experience

A panic attack is our body’s way of telling us we’re in danger. It’s unlikely you’re in any danger, but tight chests and trouble breathing are all primal reactions to danger. This can trick the mind, almost like a tripwire. So rationalise and talk your physical feelings through with someone. The more you practice, the sooner you’ll interrupt the signals between the brain and the body and if you do this when you’re not in the acute stage, the quicker your training will kick in when you do feel anxious or panicky.

  • Laugh, Smile and spend time with your loved ones!

What can make the stress disappear more than having fun with your friends and family. Make time for each other, put down your phones and other technology and talk. You’ll notice how often I talk about being with Joel and my boys. They make me laugh out loud every day and the feeling is mutual. It’s one of the strongest things we have as a team and we are definitely the reason for all of us usually coping so well!

  • Relaxation and Mindfulness

I talk about meditation and mindfulness in most of my blogs because they are the easiest ways to relax. You can train your brain to take it slowly and/or meditate daily so it calms and controls your breathing. Then you automatically have these skills to help you relax during an anxiety attack. Body Scan Guided Meditations are ideal (search YouTube) and I are some of the easiest meditations to start with. You may find that something else relaxes you, such as taking time to be present or sitting in nature.

I hope that this sneak peek into my world has helped give you an insight into panic attacks and how they can come about. I have let you in to these thoughts because I believe that mental health is as debilitating as physical health can be. They are also often intertwined and life can be tough and lonely if you keep it all inside. I feel very strongly that sharing my experiences is vital to ending the stigma that surrounds mental health. I only discuss this to raise awareness, I’m not seeking sympathy!

If there’s one thing you have learnt from my Date with Anxiety or one thing that you can take away to help yourself or your loved ones, then please let me know in the comments. I’d love to hear from you.

**AND if you’re not affected directly, then please remember that you never know what someone is going through, so please take the time to listen and talk to each other!

I’ve referenced these websites and blogs whilst writing this post:

Anxiety and Panic Attacks- Mind.org

6 ways to switch off the fight or flight response

Understanding the stress response

How the flight or fight response works

Chronic Illness Bloggers

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A little slice of normal. Making the most of life and accepting consequences. 

Today I am lying in bed, my head behaving as though been smashed against a rock…many times; my body so sore, I am struggling to sit up. My insomnia fuelled attempt to go to our bathroom, at 2am, with just a walker for the 7 steps; had me  narrowly missing falling over the top bar. I could cry; the builders have chosen today to knock down the side door’s steps so they can build me a ramp to get in and out of the house independently. I’m so excited about it, but why today. The cars going past sound like I’m sitting in the middle of an airfield. All my senses are heightened as my brain sktruggles to process the normal world. 

Yet, this week I made the choice to have broken sleep, to have searing pain; tears falling constantly from the intensity. This week I am facing the consequences of having my little slice of normal. I may be bed-bound and in constant pain even with constant morphine and diazepam meandering through my veins. I may not be able to walk without stumbling and talk without forgetting. Yet, I chose these consequence for one dose of normality. An inevitable swap for challenging my disobedient and unforgiving brain. I chose to try live one of my dreams; I chose to sell my jewellery at a village fair. 


I have been desperate to attemot this, but I knew what the week or two afterwards would be like. I knew that I would have to rely on others to enable me to get there, set up and possibly even take over; I couldn’t ask for such a selfish adventure. So, when my dear friend, Kim, offered to help me set up and take over if I couldn’t manage to stay….well, you can imagine.

I spent the next few weeks building up my stock, and organising the display; to complete the vision I have been planning for months. I hadn’t been this motivated for a very long time. But during every close of a jump ring and polish of the silver the image of the dreadful, devious stairs kept flashing their demonic smile as the day grow closer. I had said I wasn’t ever going to tackle them again, but my thirst for a slice of positive normality outweighed this extreme life of darkness.  This was it! My chance to make the most out of life again and do something for me; sticking two fingers up to my neurological conditions. 


On Saturday morning, I woke up and still couldn’t ‘rest, to conserve my energy’! Today, was all about me being normal; well, as normal as anyone in a wheelchair with tinted glasses and ear plugs can be. We arrived at midday and I was breaking all my own rules as soon as we started setting up the table. I couldn’t just sit back and guide my enablers to make the table look great. My perfectionist, spoon stealing nature just couldn’t hold back! I loved every minute of being at that stall, the buzz of my first sale, slightly lost as I was still fiddling with tags and placing items temptingly. I had that constant niggle at the back of my mind telling me that I was doing too much. But, being out and sociable (my pre-spoonie nature) was just too enticing.


I started flagging an hour or so in, but after another dose of oramorph and a swig of determination; I was back selling my wares at a very busy stall. Joel ensured I was kept supplied with cake and scones. I had so much fun selling my creations and hearing the children I used to teach, being excited to see me! I want to do more, even now when I’m suffering the after effects. It’s so important for anyone to have a positive mindset,, especially us spoonies who need a boost of courage every day. I am already thinking about the next time. My stall set up needs rethinking slightly, but I have definitely caught the bug. 


So, whilst I have spent every minute of every hour, since 12pm on Saturday; in even more devilish pain than normal. I have done my best not to cry and I am still full of the positive energy that seeing people wearing and enjoying my makes always brings. I’m reminded as I write this, that I don’t make my creations to make money (and believe me, what I make is usually enough to replenish my stock), but as therapy for myself-approved by my Dr, social worker and OT-to keep my mind as active as possible and keep my spirits high. I cannot make anything without others bringing me the boxes of beads, buttons and tools and I struggle to do the accounts etc. but I will strive to continue to make with my friend’s and family’s support. And maybe even build up a thriving buisness one day! 

I may be hurting physically but, I made the most out of my day release to last me a month’s worth of consequences. My emotional and mental breakage, now has a vat of molten gold, to fix the wounds and make me even stronger. I’m feeling rather proud of how I coped with my little taste of normality and can’t wait for the next time. 

Am I being lazy? Questioning yourself through #chronicillness

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

   

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

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

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

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

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

Find out more about hyperacusis here

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

  

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

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

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

  
 

#Morphine and #Christmas. What a combination! 

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

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

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

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

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

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

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

  

Spiders, flies and bugs in my brain. #IIH #Intracranial hypertension treatment options 

Well, it’s 3:45am on the final morning of our trip away to Kent to stay in a barn conversion on a farm. We chose from limited pickings as a last minute booking when we knew that there was not going to be that call for us to go up to Cambridge for THE operation! We deliberately chose somewhere that had all ground level access and was only about 1 and half hour’s drive away from home; preferably within easy access to the Isle of Sheppy so we could pay a long overdue visit to my aunt and uncle. The house that came up on our search turned out to be within a stone’s throw of Canterbury, where Joel (my husband) and I met at university; and we have spent the week revisiting many old haunts and reminiscing about many that have long been turned into smart wine bars or were inaccessible due to my wheelchair, or frankly, where just too much of a dive to even consider returning to, regardless of whether or not we had our 9 and 11 year old children with us! This consisted of lots of ’detours’ in the car and I fully expected to be told that they were fed up of hearing our stories of the ‘good old days’!

  
However; they loved hearing stories about us leaving home and heading off for the big adventure that is, the brilliant invention known as, the undergraduate degree! Both boys are now not just talking about what job they want to do when they are older, but what subjects they might like to study at A level and then at degree level. I love that they have faith in their own abilities and belief in their potential to be able to achieve well enough to be asking us know: how you become a professor; get a masters or become a doctor. We took them, at their own request, into Canterbury Cathedral and regaled them with stories of what it was like to graduate in such an awesome building as we looked up at that magnificent ceiling. They were inspired by the history, architecture and art of the building and, although it felt strange paying to visit even the grounds of somewhere that we used to be able to use as part of our journey to and from lectures, to see and hear the outcome of this cobbled street adventure (that managed to take the tyre of the front wheel of my wheelchair) made it money well spent. 

We decided to spend a week self catering because it would be the most forgiving for me in terms of what I would have to do; I would have time to recover from the seeemingly short drive; I could rest in bed all morning as I do at home, eat in a quiet place-rather than having to eat in a restaurant- for every meal, let the children explore the surrounding farmland quite freely without it involving me having to go out and lastly us having our own bedroom. If we had chosen a hotel I think it may have been a great break for the boys and Joel but I would have been stuck in the hotel room from day 1 and my new found snoring (my newest side effect from medications) would have kept everyone else awake! This way we have all relaxed, however, Joel has had to do all of the cooking and clearing up from every meal and we only got a couple of takeaways to keep costs down. (I’m hoping though that he hasn’t minded too much, he says he hasn’t, as he has another week off and Nina will be back with us to help out and even do a few extra hours so he can have some well deserved time off to himself).

 The only thing with being out in the country are all the creatures that we are sharing our space with. Firstly, there are the lovely farm animals; the geese outside our windows, the horse, alpacas, sheep, the dog and cats. Then there are the creepy crawlies that I’m trying to pretend aren’t in the room at the moment; spiders, flies etc. And poor Joel had such an awful creature in such a small bed that he debunked to the sofa bed after the first night! I am looking forward to getting home and sharing a bed again. Although on nights like tonight when I get woken from the pain and other symptoms at 1am and then can’t sleep, I’m glad that I’m not disturbing him! I’ve taken a strong mix of painkillers now and after trying all my usual tactics I thought that writing might help me start to tire out so I could get a bit more sleep. I’ve slept so well this holiday after doing things every day but I pushed it just a bit too far with the Canterbury Cathedral visit and that combined with the anticipation, last night, and the thought processes tonight, the whole sleep game has come to play it’s usual tricks again! So, what happened? We finally saw the wizard: After a wait of about 9 months! 

He had been quick to get me into the NHS clinic as soon as he knew the situation I was in and how bad it really was! He talked a bit more about the creepy crawlies of hospital politics and how he cannot perform the operation that he wants to perform on me at the moment because it is not approved. He also talked a lot about us needing to have a neurologist who would support the work that I have done in Cambridge in case there are complications once I’m home, so we spent a long time convincing him that my neurologist has said that she supports me wanting to be treated by The Wizard, even though she herself would not treat it that way! All these bugs and flies getting in the way of my path to get better! Why can’t they just all work together to do what’s best for me? And surely, the most experienced are the ones that know best? The Wizard is a brain and skull surgeon, he’s not a neurologist! He has studied this so much that he has devised his own operation, that they now won’t let him perform until he’s proved it’s worth! Argh, so frustrating! Here’s hoping that we can word it all in a way that smooths out the lumps and bumps in the political part of this game! 

But the real reason for the visit was to discuss our next move in this game of snakes and ladders! We looked at my scan again and he talked again about the narrowings at the styloid process and the jugular foramen but this time a new word and area of interest came up. Apparently, I have areas of  Arachnoid granulations and according to Joel, they were spider like on the scan. The article explains it but it basically means that the csf is flowing back into my blood stream and possibly causing calcification. It’s complicated and I don’t understand it so I don’t expect you too either but if you do look it up or try and find out about IIH as we hea towards September’s awareness month then please let me know as I’m always touched to know that people care enough to try and and understand. (There are links to the main UK site on my home page drop down menu) 

  

They don’t know how much of a problem these build ups might be and so the best thing to try next is the thing I’ve been dreading: an angiogram. This is where they will run a small camera up though a vein in the top of my leg and into my brain, they will probably also send a balloon in and try and open up the narrowed veins. There is a possibility that just this procedure may give me relief from the pressure but it may just provide short term relief in a similar way to the Lumber Puncture (LP) and that way give the team more evidence that this is not just migraine related. It is a very invasive procedure and so I will probably need to stay in overnight according to The Wizard, but I will have a chat to the neuroradiologist on the phone and he will give me more details and set a date. Let’s hope it’s soon but I imagine it’s going to be a case of biding my time again. 

So it’s now 4:45 and my trick hasn’t worked so I’m going to be a very tired traveller today as we set off home again. It does feel good to have written it all down and after a week of hardly any internet access it’s nice thinking about getting back to being back on the web again ( I could make another, cheesy, spider reference here); blogging, networking for my jewellery business and getting ready for lots of fundraising for September, with IIH awareness month and migraine awareness week. Watch this space for an exciting announcement in the next few days! Whatever happens next, let’s hope it’s a step forward in fixing this bug in my brain that seems to be stuck on pause! Today is going to be a long one anyway.

   
 

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. 

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.

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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…

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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.

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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:

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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.

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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.

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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???
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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.
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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.

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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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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.image

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!

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