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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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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!

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!

If you are following me on WordPress you can also follow my Facebook page for added insights and short updates.

https://www.facebook.com/Tearsofstrength

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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I don’t want to play this game anymore!

There it is I’ve said it. It’s out there in the world of blog readers and friends and family. I’d like to get off now please! Nobody wants to be chronically ill but mentally I’m really struggling right now. I’ve been ill for over a year and I would guess that 90% of that time has been spent in my house and most of that in bed or on the sofa. At the beginning I was told this was migraine and so there was hope. In my naivety I thought migraines couldn’t last day in and day out continually.  I thought it would get to a point of being under control by preventative medications. Then we searched for other answers and was told that I had venous outflow restrictions so there would be surgery. There still will be surgery; we think. We have to wait for the NHS review to decide if this surgery is worth doing; whether it improve patients lives enough. I have somehow found the only team in the world that do this surgery! Amazing but frustrating all at the same time! But still, I wait and I wait;  and the days draw into weeks and weeks into months and I wake up every day the same. In chronic, unbearable pain!

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At first I didn’t go out, I didn’t see friends. After a while of being off work; I’d try and do something small like pop out for to a tearoom with my family (feeling incredibly guilty that I was off work and out of the house)! As time went on, I realised how unhealthy it is to stay cooped up in the house and I got to a point where I was going to yoga classes and meeting friends etc, until it everything crashed and burned in September 2014.  Now I get dragged out of the house once a week at least, mainly because my children admitted how upsetting they found it that we didn’t do things altogether anymore. So we got a wheelchair and I got over being worried about what other people think (most days); they don’t know how many opioids are consumed to get that selfie smile (unless they know me well and can spot it a mile off) Last week, I went away for 2 nights with my husband. Friends offered to look after the kids for us; don’t we have just the best friends ever? So everyone packed their packs and was excited to be off on an adventure. We drove 3 hours to beautiful Somerset and I made sure I packed lots of naproxen, oramorph and diazepam. The consultants don’t like me using them; apart from the main man: The Wizard!

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It wasn’t really a long drive; not much further than we travel to go to see the wizard or his accomplices in Cambridge. I rested each morning after breakfast. I did, however, do more than normal and therefore I used a lot (as I see it, not in real terms according to my GP, he listens to the wizard) of oramorph to see me through. The thing is, I’m at a point where I can’t leave the house without using oramorph; the pain levels get so bad. But I won’t go into that again.
What I hadn’t expected was how hard hitting the after shock of those 2 nights have been. I’ve been cooped up in bed for most of the following week, feeling sorry for myself and not taking oramorph; trying to give my body a bit of a break. I’m feeling like I’ve already forgotten the fun we had going round Glastonbury and the lovely meal we had on our own one evening. I even met my favouritest 24 year old in the whole world ever and her wonderful family, who made us feel like part of their family and cooked us a delicious curry. I would never have met her without being ill (we met in an online support group) and now speak everyday through long messages or FaceTime. It was amazing to meet her and give her a real hug. I know I should be feeling grateful for these experiences and it was just a wonderful time away and I am holding on to those positives but now I’ve hit the wall and I think I’m growing a phobia.

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I’ve talked about the agony involved in getting up the stairs in many previous blogs. That is why I decided to stay upstairs the last few days as I could just about wobble around my room to the en-suite. But stuck up here I feel I’m missing out on time with the kids and general family life and making my poor husband eat his dinner on a make-up stool so I don’t feel even more lonely! Anyway; I’ve decided to tackle the stairs today and I made it to the sofa but I’m already getting the butterflies about the trek I’ve got to make back up there shortly. I wish I could be one of my cats, who seem happy to spend all day on the bed!

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But I shall carry on this journey of life with chronic illness; learning every day; battling all the way and trying to come to terms with the losses and gains of pain and illness. I’m nowhere near accepting everything that this life has to offer me. I didn’t ask to be this way. I used to wish for days in bed but now I wish for anything but. I have lost a life and my husband has lost the wife he married and my children have got to get used to having a very different mum in their life. Every day used to be packed with things to do and people to see. That is not there anymore. That’s a massive thing for all of us to deal with and although I know that positive Laura is still in there; at the moment the sadder side of all of this is taking it’s toll on me! It’s almost like I’m grieving more because we did something more like we used to before I got ill. I’m sure that acceptance will come and I’m sure that I will write more as I question this more!
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PS I made it upstairs to bed okay and have had a more positive day today. I will continue to fight every day. Some days are easier than others!

The push and pull of parenting when you’re a chronically ill mum.

I’m starting this post at the end of half term. A half term where my husband has taken every day off work so we can spend time as a family; have friends for the boys to play with here (managing to attempt to start repaying some of the help of our awesome friends who collect them weekly from school for us); relax together and go on short trips out: not day trips anymore, but maybe a trip out for coffee or to the library!
Being a mum is the best thing that has ever happened to me and I feel so privileged to share parenting of our awesome boys (9 and very nearly 11) with my amazing husband! However there’s an evil interloper in our family at the moment: chronic illness! It gets in the way of everything and frankly we’re all fed up with it. I’m living under it’s fog; rarely getting cross with it as, actually, that takes up too much energy. And I only have a certain number of spoons to use each day; I must use them wisely.
Spoons? Continue reading The push and pull of parenting when you’re a chronically ill mum.