Why does sharing our story matter? Should we just tell friends and family or should we share with peers, colleagues and other sufferers too? 

Last week was Mental Health Awareness week (MHAW) and I have been very busy posting links on my Personal twitter and Facebook sites for mental health awareness but also to a much wider audience with the Mission Migraine Twitter Account that I run. I have been posting many links to groups that challenge mental health stigma and also re-tweeting beautiful quotes and sayings that link beautifully to the practice of mindfulness. However, in the relationship my husband and I have, we always support each other (with a side order of competition 😉) and he agreed to speak to a fairly large group of colleagues as part of the MHAW for Lloyds Banking group about how we as a family have coped with the past 16 months-since Jan 2014-and how the pressure on the family has affected him in his high pressure role within the company.

In this blog I am going to talk about 3 things: How sharing can help you and others and why that is why I came to writing this blog in the first place; how mindfulness can help anyone aged from 4-104 years old and especially those dealing with chronic illness and mental health issues; how my husband’s talk went and how it impacted on us and those he spoke to and how this might affect his colleagues going forward.

1: Sharing

So, sharing is caring right? If I talk about what is happening to us and share it amongst our friends a) they begin to understand a little bit about what life is like for us. If I didn’t do that then they would likely to just see me on my good days (apart from about 4/5 very close friends who let themselves in the house through a keysafe, or even have their own key, and come to help whatever state I’m in and have seen me at 0 colour on the dulux chart and unable to get out of bed). They would say ”you’re looking well” and I would be thinking about giving out flyers to to explain that I have an invisible illness! And that is why I started writing. At first just on Mission Migraine; where every post gets shared publicly on my Facebook page, and then by deciding to start this blog; then the sharing has become huge and now through my Facebook page https://www.facebook.com/Tearsofstrength. I have more followers that I don’t know now, than I do my friends. It blows my mind when I think about that, and that’s not even counting my awesome followers here on WordPress and on Twitter! All in all over 250 followers and growing rapidly. Wow! And that is how showing your vulnerability, and deciding that by sharing your story you might help just one other person, means that sharing is the right thing to do. Plus it is undeniably cathartic for me and I love every minute spent writing, even though it can take a long time for me to finish a post (especially as I like to talk so much).

2: Mindfulness

This is about being in the present moment. It’s another way of thinking about meditating; except it’s even easier. You don’t need anything more than 5 minutes and a little bit of quiet and these 4 steps.

a)   Find a quiet space where you can sit by yourself and not be disturbed for at least 5 minutes. Even a toilet can work but a park or your bedroom might be nicer…

b)   TURN OFF YOUR MOBILE PHONE!!! Don’t just mute it, turn it off. It’s only for 5 minutes.

c)    Take 3 deep breaths in through your nose and deep into your belly, not into your shoulders. When you feel ready to, close your eyes. Now try and settle your breath into a comfortable rhythm. It should be deep still and your stomach should rise and fall. You could count 3/4 breaths in and out. You could even hold for 2 when you breath in before you breath out again. Or breath in for 3 and out for 4, until you are ready to settle into that comfortable deep breathing that you don’t need to think about. This can take some practise. Don’t worry if you get this wrong. It doesn’t matter just keep practising.

d)     Now think about somewhere you would love to be; maybe a tropical beach with the waves lapping the shore; a beautiful pool with a gentle trickling waterfall; a magical forest with trees reaching the sky and their leaves making the clouds, with the grass beneath your feet as soft as cashmere wool or sitting on top of a mountain, looking down at the beautiful lights of the city that are glittering like constellations of stars. Tell yourself the story of the place and use all your senses; think about sounds and smells as well as what you can see. That’s it. Simple as that. When you have finished; take 3 more deep breaths before you open your eyes again. Again this can take some practice and your mind may wander on to your shopping list or how your going to fit in making tonight’s tea and get to the gym. It doesn’t matter; there is no wrong in meditation and mindfulness, it is all just about accepting the present and being in the here and now. The more you do it, the easier it becomes. Keep trying!

Now you can do this whenever and wherever and you don’t need to wait until you’ve finished work or anything. Infact, the less time you think you have to do this; the more you probably need to. I do this and also use guided meditation from YouTube such as this one:https://m.youtube.com/watch?sns=fb&v=PYsuvRNZfxE

There is more to mindfulness than this; it’s also about noticing the little things around you instead of rushing through your day all of the time. Joel talks a little bit about how he is becoming aware of that in his speech later. It’s about just trying to slow it down a little bi. It’s also about getting out and experiencing nature at the weekends instead of just being surrounded by technology all the time. It’s too much to go into now and I’m not an expert; I haven’t even read any books. I’m learning as I go and just trying to spread my time across time on myself and that on others. Time to be creative, time to rest and time to exercise (although that for me is just getting up and down the stairs and doing wrist circles!) There are things to read such as this…. (I haven’t)

I follow a really inspiring person on twitter and Facebook who is paralysed but is so positive and posts about mindfulness and he is worth checking out!

https://m.facebook.com/TheMovingRoad?_rdr or follow him on twitter @themovingroad.

The last part of this blog are not my own words but my husband Joel and I work as a team and always have; and this illness has done nothing but bring us closer together. When I posted on Facebook that he was doing this talk, many of my friends wanted to listen too; so we have decided to post the transcript of the talk below for you! I am so proud of him for speaking out.life as it is now is just as hard for him, if not harder! He has to see me in pain and can’t do any thing about it. I thank him so much for raising awareness among his colleagues, of not just how this situation has affected our family for MHAW, but how he, has amazingly maintained his senior role without letting anyone down and has in fact, continued to perform at an extremely strong level and then comes home to see his wife broken in pieces by the pain racking through her body. His strength and resilience are awe-inspiring and I hope that some of his colleagues that listen to his talk feel that they can comment on some of ‘laughing while you’re crying’s’ posts.

3: Joel’s speech to Lloyds TSB staff for MHAW15

Friday and the build up to and the fall out of, as well as the actual speech, was very emotional for him. He was in a room on his own and it was over a phone conference that people could dial into. It was also recorded and will be available to listen to across the whole bank but only internally. However, because of our synchronised feeling about sharing, as explained earlier, he has written down his speech and sent it to me. When I read it I cried; it brought home to me how much I’ve lost in this battle, because I don’t tend to think about it. It even made me wonder if I’ve talked much about what I did before I was ill, on my blog. This is because I focus on positives all the time and only think about what I can do! Some of what he has written could have been my words exactly. I have edited only slightly so that it doesn’t sound like a conference call anymore!

“* I will talk today about coping through sustained crisis and the emotional drain on mental health that living from day to day has on me and my family.

* I have responsibility for the data and business built systems across critical customer facing operations, supporting pan Group Operations on points of technical expertise and insight. This is a very demanding role, and I have a world class team around me in delivering what I do.

* I am happily married to Laura and we have two great boys! Zeke and Luca who are 11 and 9. Laura is a Primary School teacher and throughout her career we have all supported her in what is more than an all consuming vocation; where education is constantly in the fore of her mind. She is bright, energetic and driven- a real inspiration to a lot of peers and colleagues alike.

* Our lives have been hampered over the last 7 and a half years somewhat with what Laura was diagnosed with as chronic migraine. This was then episodic and typically resulted in weekends of dark rooms and quiet times.

* This all changed dramatically in January of 2014 when Laura suffered an episode which has since not gone away. She has subsequently been diagnosed with a rare brain condition called intracranial hypertension; where, in her case, the blood flow can get into the brain at normal pressure but cannot escape, leading to increased pressure and all of the following symptoms:

  •  lack of mobility; Laura is housebound, and virtually bed bound. We use a wheelchair when the pain subsides enough to venture out to a quiet place.
  • Aversion to noise and light
  • reduced cognitive function; she is confused easily and can’t sustain a long conversation without increased pain

* You can imagine this has been, and continues to be a tough time for her, especially as the only potential treatment is yet to be approved in the form of pioneering surgery. She basically manages on a cocktail of very strong drugs, ice packs on her head and as much rest as the pain allows. This has left her disabled, and the rest of the family basically coping as carers-hence why sometimes it is a little tricky for me to balance work and home commitments.
* The reason I agreed to share my story with you all is to do with the very real link between coping through crisis and impacts on mental health. I would like to talk a bit about being aware of the signs of a mental struggle and difficulty, how we manage, and most importantly how we choose our mindset in battling through.

* One of the things I have been keen to do is practice mindfulness and setting the mindset for the day. It takes as much energy and effort to be positive, focused and driven to succeed as it does to allow negativity and failure to defeat you. To set my mindset I have to be aware of my behaviours-how are they impacting on others, how am I coping with the challenge, what are the telltale signs of falling to the more detrimental side of the knife edge we walk every day, and coaching myself through moments of anxiety; clearly brought on by the worry of living with pain, pressures of parenting, caring, household and career. I used to notice sometimes that my speech was affected, the feeling of a tight band of pressure around my chest, and a struggle to understand everything around me. At times like this, I focus on breathing, giving myself the time to calm down, and shrug my shoulders down- the mute button on my phone is perfect for this, though I may well look a bit odd in the office! I have been able to significantly reduce these episodes since accepting that I am struggling, and we as a family asked for help. I have had great support from my team and line manager-and I am particularly proud that I work for an organisation who values me enough to allow flexibility in expectations-admittedly I still have a few of those early morning calls-but the boys are great at tolerating my work while I drive them to school!

* It helps tremendously that we now have a PA who supports Laura with the simple every day things-and this reduces the worry and stress for me as the little things like washing or sweeping the floor aren’t what I am trying to catch up on at 10pm once the kids and Laura are in bed!

Laura is an inspiration to me and our kids-she is in constant pain but tries still to help and maintain as much normality as she can. One of the really powerful things she does is write a Blog which I have shared with you today. She spends the time debilitated in the house researching and reflecting on experiences of herself and others in chronic pain; and publishes her writing online. Her whole ethos, and that of the family as a team is one of positivity. We don’t focus on what we can’t do anymore, but on what we can do, and what achievements are possible within the confines of our circumstances.

My 9 year old boy Luca takes on the role of coach when encouraging Laura to crawl upstairs on the days she has made it to the lounge-a 15 minute journey-as every step of the way he encourages and celebrates. Zeke is the reflector and pragmatist, he is the voice of reason when he tells Laura perhaps she needs to take some medicine or lie down.

On the point of mindfulness-we do something a bit twee, but it works. Every day we look to reflect on the positives for the day, write them down and put them in a jar. This galvanises the positive for the day, allows us to reflect, and on the really dark days this can be more than a little tricky. On those days, we can get a ‘positive’ out and be immediately reminded of something to lift our spirits. Laura picked a lovely one out the other day after a brutal period of pain and borderline depression: ‘sitting on the sofa with mummy’; a real reminder that we don’t have to always do the huge things to make a difference to our kids.

* I really wanted to share my story to basically say that we are all strong in our own way, adversity tests us, but that positivity is something you work towards. The techniques that help in managing my well being are:

  • setting a mindset of achieving rather than focussing on what we can’t do
  • Working as a team-being prepared to ask for help from GP, line manager, family, friends
  • Being aware of when behaviours aren’t what you’d expect of yourself; seeing this as you would a cut or a pain and seeking advice and help. Mental illness is an invisible condition-that doesn’t make it any less real-be aware of those telltale signs and be prepared to ask for help
  • Most of all-talk-be prepared to accept that we aren’t all invulnerable. “

Joel’s talk received a standing ovation around many different offices where people were listening in. He has had fantastic feedback from those listening and from his direct management. The recording will be available soon for anyone in the bank. Numbers are rising on my Facebook page and there has been a lovely comment and lots of likes on the posts. I hope that reading this incredibly long post has shown you why being part of such a great team-my family-and having such a strong relationship with my husband is what helps me to stay positive and gives me the courage to get up every day that I can. And, believe me, I do know how luckily I am to have that!  Stay strong!

3 thoughts on “Why does sharing our story matter? Should we just tell friends and family or should we share with peers, colleagues and other sufferers too? 

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