Tag Archives: invisibleillnesses

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

Advertisements

Life as a bed-bound workaholic. #chronicillness

Stopping work due to ill health usually leads to a feeling of loss and purpose. For workaholics, giving up a career just adds to the grief of a previous life. If you’re also mostly bed bound; it’s almost impossible to give in.

On being a workaholic 

Design

I’d wanted to teach from age 5 and I loved it from the moment I stepped in the classroom. I was a workaholic, working nights and weekends, to try to make a difference.

Teaching is so much more than a job, you never stop thinking about some aspect and with you take on many roles.

Design

When I had my boys I worked part time, but was still working a 40-50 hour week. A workaholic is compelled to keep working and creates a life that’s out of balance. Read more here. Being a mum always came first, but I always felt the need to be doing something. Just a workaholic in another role; feeling like I couldn’t do either role justice. In hindsight; I know I gave both roles everything I could.

Becoming Bed-Bound

If you’ve read my story, you’ll know I had to stop teaching when I became ill. When we came to the mutual decision that I should be medically dismissed, I knew it was best for everyone. However, I struggled with the reality of having to bow out, from my bed, with no farewell, after the 14+ years I’d dedicated to my profession. I still wish I’d done more, but I’m proud of all that I achieved and that I had some influence on so many little lives.

We realised that becoming bedbound had a silver lining. I could now just enjoy the most important job I had and put everything I could into motherhood, without throwing life out of balance! We love that I’m more present and less stressed. Now I love hearing the key in the lock, anticipating my boys coming to see me.

IMG_1500

However, as a workaholic, even a bed-bound one with brain disease, I still needed to be DOING something. So I began making jewellery and soon discovered Conscious Crafties Marketplace The site was set up to give those with chronic illness, disabilites or their carers a sense of purpose again. You’ll find this statement on the site’s homepage.

‘A community of talented artists and crafters who are living a purposeful life by changing the way humanity perceives those living with Chronic Illness, Disabilities or Carers of those affected’

This amazing community has helped me connect with others who understand what we’re going through. I’ve made many true friends and am living a purposeful life. But, I’m a busy minded person and so volunteered to help Karen (the founder) run the site. Everyone tells me I do too much, but I thrive on helping others and love organising things. But I was juggling all of this and more, from bed, and it was beginning to impact on our family time, so something had to change!

Breaking Free

IMG_1504
Making the best of family time

I needed to break some of the bad habits I’ve developed over years of being a workaholic. But I have the best motivation; to bring balance in to my life. I’ve looked at my behaviour patterns and found I was spending far too much time on social media. I’m now slowly re-training my brain to know that it’s okay to rest!

Josie from Worry Free told me that ‘My JOB is to heal. By giving me a role/job of healing and rest, I have that all important role we crave and am now a resting workaholic! Such a simple idea, but so effective; I’m already breaking bad habits,  doing less and achieving more. Ultimately I’ll have more quality time to spend with my family.

 

Chronic Illness Bloggers

#IIH life in the slow lane!

I’m finally posting an update after my 2nd surgery, nearly a year on, so thanks for your patience while I’ve been in the slow lane! I’ve been on a rollercoaster journey with my IIH (Idiopathic Intracranial Hypertension) over the last year.

WHAT’S BEEN HAPPENING?

In June 2017 I had my second skull surgery and 4 weeks ago I had the same operation on the left. They have removed the C1 vertebrae mass on both sides to make space for the jugular vein that was squashed; preventing blood draining from my brain. I use a plumbing analogy to explain this. If you think of the veins as the pipes, you’d remove the blockage at the top first, because if you remove the top blockage beforehand, you’ll just create a bigger blockage below. This is how my surgeons work, slowly and methodically to ensure that all surgeries are exacting.

The surgeries have been difficult for us all. I’m not scared of surgery, but I worry about how my boys and Joel will handle the added pressure. This time, I’ve asked for help from the wonderful Josie Brocksom of Worry Free who gave me strategies to help me deal with my concerns and trust that Joel would be able to cope with the additional pressure, which of course he has. She has also taught me that it’s ok to rest, so this time I have let myself stay in the slow lane so that I can heal!

I’m lucky enough to be covered by private healthcare. One of the biggest perks is having a private room of course, but I love the food too! Yes, really! I’ve been waiting to show you this photo of the yummy lunch I had the day after my surgery last year. Just look how good that was! I just had to order the same this year too!

IMG_9568

Before I continue, I wanted to address a question Joel and I get asked so often:

HOW DO WE KEEP SO POSITIVE?

As with everything in life, we have some choice. Of course, I have no control over how the IIH affects me, apart from my pain relief. However, I do have control over how I manage to stop my high pain levels, from affecting my mood. Myself, Joel and my boys also choose how much we let IIH affect our own lives and time together.

I’ve been able to share over 20 years with my best friend. Joel is affected by IIH just as much as I am. However, amongst experiencing all my of pain, constant worry and looking after us; he works incredibly hard in a tough job. He is also an advocate for carers through the Family Matters team across the whole of Lloyds Banking Group! He keeps me going and picks me up when I fall. He makes me laugh til it hurts and ensures that the children have emotional, physical and comical needs met. I couldn’t ask for anything more and I know I’m lucky to have him by my side at every step.

I can’t say all is peachy, as of course it’s not: I still cry, get frustrated and have meltdowns-I’m only human! Joel and the boys keep me fighting this disease and get on every day. We’re open with each other and share our experiences with others who just get it.. We also have the opportunity to raise awareness of how to stay positive when chronic illness affects a family, and we are both very proud to do this!

THE SURGERY

When the wizard has (my ENT specialist surgeon) removed part of the C1 vertebrae, he gets as close to the nerve as possible; without it being dangerous. This is only done for the few like me, by the team in Cambridge. They’ve developed procedures to reduce unwanted side effects and they explain everything so well. They are now developing other studies and sharing their findings with the medical world.

I was only in overnight both times and have a drain in which helps to limit the chance of having unwanted side effects. These are shoulder weakness, trouble swallowing and a hoarse voice. It’s too gross to show, but here are my post op selfies!

2016-feeling warm and puffy!

IMG_9569

2017-Looking amazing on oxygen all night due to low SATs

IMG_1396

The operations have both been successful. The scans show that the jugular vein is no longer under pressure and the blood can flow freely through the veins there now.

NEXT STEPS:

During my pre-op testing (ct venoplasty/venogram), my neuro radiologist found arachnoid granulations pushing on my stent and narrowing the flow of blood. These are normal lesions found in the venous channels that allow the CSF to flow into the venous channels. These are rarely found in the transverse sinus, however, and unfortunately they are growing around and through the stent in the left side. This explains why I started to go down hill again a few months after last year’s surgery, so I will need a procedure to stretch the stent and push the granulation back.

IMG_1397

Unfortunately, I also need a stent in the right transverse sinus, so I have been referred back to the neuro radiologist following our check up in Cambridge yesterday. It’s good to know that we are moving forward surgically and it means that I can focus on my goal of reducing the morphine even more. The transverse sinus is part of the venous system in the brain and allows the blood to drain from the back of the head. If you’d like to know more, I have a reference to this medical article here.

Last year’s surgery was such a success that I was able to travel abroad, have a 40th birthday party and generally spend more time with my family. This is my priority and as I was able to reduce the dose of morphine I take in the morning a few months ago, I now need to get back on track with that as I come out of the other side.

I’ve big plans with my family this year and although I always suffer, it’s so important that I try and enjoy my life as much as I can. I don’t know how much I will recover from this disease. This means making the most of life NOW! This is why we decided to visit the Imperial war museum yesterday on our trip to Cambridge. This was only my second trip out of my bedroom since surgery. Although I only managed half the visit in the museum and the other half lying down in the car, I’m amazed that I was able to do tbis and even though I’m exhausted today, I’m still finishing this blog!

As it’s only a month post op, I can’t say much has changed; although I haven’t passed out since, which was happening weekly beforehand. But, I feel like I’m turning the corner now and have every faith that symptoms will continue inproving quickly, as soon. I had such a positive response from last year’s surgery,  I feel positive that I will continue making baby steps towards achieve my goal to reduce my meds and increase time with my loved ones. So, I’m still in the slow lane, but I’m happy here for now whilst I carry out my job of healing, and continuing to rest!

Please check out my social media accounts and stores if you’re inspired:

http://www.facebook.com/Tearsofstrength

http://www.twitter.com/happyiihgirl

http://www.instagram.com/paprikajewellery2

http://www.pinterest.co.uk/PaprikaJeweller

SHOPS:

http://www.etsy.com/uk/shop/ThePaprikaJewellery

 

Chronic Illness Bloggers

Skull surgery again #braindisease #iih #iihwarrior

On Friday we took another trip to Cambridge to see the Ear and skull surgeon; or The Wizard as I call him.  He could really see an improvement in me as if not seen him for about a year. It was so nice to hear that, as you don’t always notice what a big change there is over that space of time and he hadn’t seen me since my stent operation in September last year (2016); which we feel had an effect on my noise sensitivity; although I still hear the pulsatile tinnitus and have to wear ear plugs when I’m out of the house. He could also see the vast improvement in my cognitive function that improved after the styloidectomy I had in January 2016 and again after the stent surgery. I’ve only just started noticing these benefits again, due to suffering from that horrid infection for most of February and March and struggling to get over pushing myself to much at Christmas. Everything is feeling very positive. 

It was a very quick appointment as he was just confirming that the next operation is on and what the side effects might be.   He will be removing some of the bone of the C1 vertebrae on the opposite side of the jugular vein to where I had the last bit of bone (the right styloid process) removed. This should open up the area for the blood to flow more easily through my constricted jugular vein; however, I may need a stent put in afterwards to get the full benefits. The side effects are the same as with the styloidectomy; possible weakness of the shoulder, a hoarse voice and other minor side effects. 

Below is a diagram showing the skull. I have highlighted the area where they need to make more room for the jugular vein (allow the diagram shows these areas on the left side of the skull  The Styloid process is on the left of the circle; sectioned off. This has been removed on the right side of my skull. They will be working within the right half of the highlighted circle for this operation. 


We are just waiting for The Wizard’s notes to get to the secretary and then we can book a date and this should be soon as we are very lucky to have private health insurance that covers all my treatment for the IIH. (Idiopathic Intracranial Hypertension) 

To say THANK YOU for all of your amazing support for my next skull surgery and for your constant patience and understanding; I am offering a chance to win this beautiful heart jewellery set of necklace, earrings and bracelet. They are all made with blue and green glass pearls.


💚💙💚 FACEBOOK GIVEAWAY 💚💙💚

Click here to enter
💚LIKE & COMMENT ‘yes please’ on my Facebook page to win💙

The giveaway will run until I reach 500 followers or I have recovered from surgery-whichever happens first. There is NO set deadline; however I will give you at least 24 hours notice before I close the post.

So to take part: 

***👍🏻 LIKE the Facebook post

***COMMENT on the Facebook post with the words ‘yes please’ or similar

***SHARE the Facebook post. This is not a requirement for entry but there is more chance that this page will reach 500 likes sooner. It would be a really kind gesture, so a HUGE thank you if you share too! 

****If you’re feeling super kind then you could SHARE my Facebook page too.

I will let you know my surgery date and will post updates when I can. For more information on IIH (Idiopathic Intracranial Hypertension) go to: 
To find out more about IIH click here

If you would like to make a donation then please visit: 

www.justgiving.com/iihuk
Thank you again, Laura 💚💙

* This Giveaway is in no way affiliated with Facebook or WordPress