Tag Archives: conscious crafties

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 

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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.

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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.

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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

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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.

 

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Being kind to myself; meditation and selfcare

Those of you who have been following my blog for a while, will know that I love to meditate. It’s one of the only things I can do to help relieve my constant pain; just a little bit. Meditation is taking time out to focus on yourself and introduce mindfulness into your daily routine. You can do visualisations or keep it simple with a guided meditation from YouTube. OI recommend The Honest Guys and Jason Stevenson. They just hit the tone perfectly and even have guided meditations that are specifically designed for those who are in physical pain. They are aimed at anyone who needs guided meditations and visualisations and are great for those with mental health problems; such as anxiety, depression. This two are especially good, as they are generic and great for beginners and anyone else!

Whilst I’ve been suffering from so many infections and heightened pain levels; I’ve forgotten how helpful I find meditation. Now this is one of the main issues that I have picked up on that are not helping me reach my goal for 2017. I made a promise to be kinder to myself. I am much better than I was and losing your way when you have set goals for yourself is normal; our brain fights to go back to what it knows, when we are trying to change our mindset.

So, I’ve revisited some of the steps towards my goal:

  • I have worked hard to limit my to do list. I bought a diary so that I could plan out my social media engagement and tasks and creative themes for my business. I’ve used an erasable pen or pencil, so that I can move tasks if I’m having a bad day.
  • I’ve been able to say no to friends visiting when I need rest days and tried really hard to celebrate my achievements.

However, I haven’t been so good at self care. I have got out of the habit of revisiting my pinterest vision board for achievements and positive quotes. Creating time for myself has been neglected a little; mainly by my meditation practice  disappearing from my daily routine. I’ve also neglected my writing. Both of these are so important for my mental health. I think I will try planning it into my day’s tasks in my diary. We’ve also made changes to my Carer’s tasks for the day and that has been an amazing help for them and myself.

Last week, my writing mojo returned and I have been honoured to join the team at The Fine Print of Pain. This is a brand new site, intended for people with chronic illness to have access to a plethora of advice, information and even has a space for chronic illness creators to show off their talents. This excites me so much. I wrote my first article to explaining IIH you can find this here. The editor, was stunned by my writing and said I had “produced an article that was articulate, focused, and properly done, especially for your first time! I feel so proud of this (and will add her words to my vision board). However writing like this today, about what is playing on my mind is so cathartic.

So, I have started this blog instead of meditating which  was my plan. However, I just felt so sick that I couldn’t settle. Being able to just write about what is happening for me now, has distracted me and my nausea is settling now (with a little anti-emetic help and a dose of oramorph). It’s reminded me how much writing helps me work on my positive mindset. I’m now going to pause, meditate and hopefully have a snooze and then I will finish what I have to say about meditation and self care; the first steps back to my daily routine for a positive mindset. It’s 10:52am. I’m going to listen to a sleep meditation to cleanse your chakras; appropriate for those with an affinity toholistic practice and spiritually.                  Before Sleep: Chakra Realignment

Ahhh….it’s now 12:20 and I’m having my Pukka ‘revitalise’ tea, tucked up in bed and feeling so much calmer. That is all it takes to remind me of the importance of this. My pain is lower, I feel a tiny bit more energised (still having a bed day though) and my shoulders are still lower than my ears! Ok, I still look poorly but I am, so I just have to deal with that!

Self-Care

The actions that individuals take for themselves, on behalf of and with others in order to develop, protect, maintain and improve their health, wellbeing or wellness. SourceThe self-care forum.

I have been working towards all of these things with the support of an amazing group of women. It is run by an  inspirational Coach calls Josie Brocksom who runs Worry Free hypnotherapy and coaching. It makes me focus on recognising my needs so that I can be the best that I can possibly be. I highly recommend this lady and her fab blog too!

Next Steps

It’s now time for me to put into action some of those good habits that I have let slip.

  • I will plan time to meditate at least once a day
  • I will make use of #wednesdaywisdom by posting in here, on Twitter and my Facebook pages (personal and my Paprika Jewellery & Accessories page, which you’re very ŵelcome to visit) to help me revisit my vision board.
  • Write regular blog posts, I’m going to aim for one a week, maybe a fortnight.
  • Take praise on board and capture some of it to add to my vision board.
  • Plan my social media time, so that I don’t let it take up too much of my time; which could be used creatively or as rest time

 

Reflection after #brainsurgery; positive outlook with a hint of disappointment 

After my brain stent surgery in September 2016, I promised that I’d write an update. I waited initially, to see what would happen. Preparations for my online shops; including my Conscious Crafties shop took over. This amazing site helps those of us with disabilities and chronic illnesses, and our Carers to have purpose and stay positive. It is one of my biggest lifelines and has helped me stay up during these tough months. Then Christmas and the post Christmas crash happened. 

All of this has kept me very busy, but, I am prioritising being kind to myself in 2017. This includes spending more time resting and reflecting on my achievements. I have been working very hard to improve sales on my Etsy shop too, but I’ve forgotten how important it is for my whole family, that I look after me. Today I realised how important writing these blogs are for my health. They are a key expression of myself and free therapy. If I feel I can help or encourage others then that makes these blogs even more special. So, I apologise for neglecting you all and I will do my best to keep posting regularly.


Next week I have my brain surgery follow up appointment with my neuroradiologist (The Boss Man) in Cambridge. I am booked in for a CT venogram and cerebral angiogram.  We will discuss the impact the brain stents have had; based on test results and my description of changes and improvements. As I need to reflect anyway, I thought I’d share this with you.

Following surgery, we noticed an immediate difference in my cognitive function.When I returned to the ward, even behind the large sunglasses; my husband could see a difference. I continued to improve and almost felt like Laura again. I have been able to hold conversations again, instead of just information swapping and I now even ask how Joel’s day has been. My boys engage with me more and seek help to help resolve issues again. My GP has noticed that I slur my words less and my friends noticed a change too. One friend told me how she used to leave my house upset at how distant I had become. I’m so glad she could tell me this, even though it was upsetting; but we are both so happy to be properly connecting again.

All parties were unsure of the impact the stents might have on my pain levels. I’m not going to lie, this is the one thing I was and am still desperate to change. Despite knowing that this was only a pawn move in the game of chess, that is my health, the opposition (hospital politics), may just be caught out with the strategic moves we’re making towards their King; (jugular foramen decompression surgery). We knew it was unlikely to be a game changer, but I’ll never give up hope. 


I was hopeful and as the weeks went on, I noticed a small improvement in the severity of the constant pain. This was quite something after having to replace the large dose of naproxen I was on, with paracetamol; due to needing to take aspirin as a blood thinner. Although still in constant pain, I was going downstairs more regularly and coping better with the pain levels when I did go out; using less oramorph. I did and do still suffer heightened pain levels and insomnia after any activity. The insomnia drops me back into the pain loop, until I manage to reset my spoons. Going against my consultants’ recommendation, my GP decided that until the pain was more stable; I should continue to use morphine (a hint of disappointment).

Disappointingly (more than a hint), I feel I’ve taken two steps back in all aspects since Christmas. I’ve passed out a couple of times and been holed up in my bedroom with chronic fatigue, horrendous pain etc. I feel safe in my bedroom, I think; I can still make cards, jewellery and write poetry as a distraction from the pain. Since having the stents fitted; I’ve only had one or two vertigo attacks, however, the pulsatile tinnitus, phono/photo sensitivity and hyperacusis are all much the same. 


Writing this has made me reflect on our life before IIH barged it’s way in to our life, our old life where I would plan every minute of every day. Disappointingly, once one of you becomes chronically ill/disabled; you and your family unit have to make huge life adjustments. However, I wouldn’t change the life we had before IIH; other than spending more time together. In December, I watched my son’s last ever Christmas show from inside the hall. I am engaged in life again and I have seen a glimmer of hope; we may yet reach check-mate. So, my trusty earplugs, wheelchair and sunglasses will still be with me when I journey back to Cambridge next Thursday. These stents were never meant to work miracles, but there are so many positives I can take from this latest episode of my story. This is yet another piece of evidence that messing about with my jugular vein, really is worth the hassle.  I will let you know what The Boss Man says about our next strategic move.

 If you are new to my story, then you may wish to see where the game really got started, over a year ago, our first chess move, made in October 2015 Read about it here. Or like my Facebook page here for all my updates.