Category Archives: Relationships

Guest post: summing up

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

Thankfully, I have come to the end of my short career as a ‘blogger’. Over the last few weeks, I have tried to share some personal perspectives on supporting someone with Myasthenia. I hope you found them even slightly useful.

Extracting some themes from the jumble of words in my blogs, I will leave you with the following summary of my ramblings

1) having a team is important – yours can be made up of anyone who has a positive influence in your life.

2) Communicate with your team – tell them what you need and don’t feel guilty or awkward about it.

3) Try to put your pride to one side – by letting people help you, it will indirectly help your partner.

4) Know your boundaries – to help you be a supporter, there are some things you may need in return from your partner e.g. communication, being involved in decisions and compromise.

5) Be patient – you can’t fix everything.

6) Google is a horrible place – stick to the facts and avoid the ‘but what ifs…’ where you can.

7) Guilt is not constructive – try and focus on all the good things you can and have been doing to support rather than what you can’t do.

8) Unspoken thoughts can be there to protect you – there is often a nugget of value in the middle of the madness:

9) Be kind to yourself and be kind to each other – you’re both already doing great.

My final point is the most important of all:

10) Give a big two fingers to Myasthenia – When Laurna got diagnosed, I quickly learned that there was a time for talking. Retrospect has shown how important it was that there was also a time for not talking; just being us, having fun and enjoying the life we had chosen together. 

When I look at Laurna I don’t see someone with Myasthenia – I see Laurna. A person who is passionate, smart and kind. A person who I can’t spend enough time with. I completely refuse to let Myasthenia change that – there are so many more interesting and fun things about Laurna and she will never be defined by her condition in my eyes.

So there you have it. If you have made it this far, thanks for reading. I am really looking forward to hearing about other people’s experiences.

 Like Laurna, I have much to learn and more bridges to cross. I always appreciate the support and perspective from the Myasthenia community and can’t wait to read the next instalments. 

Guest post: The fear, the guilt and the irrational thoughts

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

This entry is about the period after diagnosis when the initial shock is starting to wear off and the fear, guilt and crazies start to creep in.

The Fear

The aggressive onset of Laurna’s initial symptoms made me fear for her and how much further her condition would deteriorate. Within a year, she had gone from having no symptoms to having regular tsosis, speech slurring, difficulty swallowing and weakened limbs. Google was a terrifying place with its doom and gloom articles and pictures. I have never been a particularly creative person but during that time, I dreamed up every scenario possible (and even those that were impossible and frankly ridiculous).

Selfishly, I feared that Laurna would want space after her diagnosis and maybe break up with me. As it turned out, Laurna did need space to figure things out but thankfully not in the way I was worried about. I had to learn to be patient and accept that I can’t ‘fix’ everything. Looking back, I have always really appreciated how patient Laurna was with me learning to be patient!

The Guilt

I am sure lots of partners can relate to this but put simply – ‘It Should Have Been Me’. I just felt guilty. I felt guilty for having fears. I felt guilty for feeling guilty. Laurna had Myasthenia and I couldn’t take it from her or even share some of the load. 

Laurna has always been so active and it seemed a particularly cruel thing for such an energetic person to get. It left me feeling very helpless for quite a while. Ultimately, this kind of thinking doesn’t help you and it doesn’t help your partner. I tried to focus on the things that I could do rather than what I couldn’t do and I found that helped a lot. 

The Irrational Thoughts

I know it’s different for everyone but my brain turned into a tumble drier of questions, thoughts, doubts, concerns, ideas and plans.

How did I feel about Laurna’s diagnosis? What did it mean for her? What did it mean for me? How much training would it take to be able to run every marathon ever organised and raise thousands of pounds for research? What impact would it have if we wanted to have children in the future? Was I going to give up my career to look after Laurna? On second thoughts, I could never give up my career because I may have to support the both of us? What if I retrained as a scientist and single handedly developed a cure – can’t be that hard, right? Am I really the right person to deal with this….

As you can see, I went from having a total crisis of confidence to being overly exuberant in wanting to defeat Myasthenia. There was also a lot of fear driven hypothesising and general concern for the future. I worried what people would think if I shared my doubts or concerns and so they remained largely unspoken. 

I now understand that it is important to engage with the unspoken and feel more comfortable allowing myself to feel whatever it is that I feel. Sometimes ‘unspoken’ thoughts are there to protect you – there can be a nugget of value in the middle of the madness.

Conclusion

I’m not really sure when the ‘fear, guilt and crazy’ stage ended. It all just phased out as we ‘got on with stuff’. The main thing I would take away is to be kind to yourself and to each other. It is a complex phase to navigate and requires patience, empathy and communication. It’s when your support team can really help too. 

The priority is the person with the Myasthenia who has much more to deal with than you in this moment. If you feel that this phase is getting in the way of your support or your relationship, there are lots of options available. Counselling is always a good place to start and the Myaware charity (amongst others) has great resources including a counsellor and support groups. Just remember you’re not alone.

Guest blog: Go team

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

Teamwork: Less Me and More We

I mentioned this already but Myasthenia really is a team effort. Luckily, Laurna has a great team to support her which is made up of her amazing family, friends, colleagues and of course, the MG community. When supporting someone with Myasthenia, it is important to also rally a team of your own

My team – who are they?

Anyone and everyone. For me, I have the greatest team to support me made up of people who don’t even realise they are on a team (surprise!)

I consider anybody who has ever asked “How’s Laurna?” or agreed to come for a distraction pint with me as a member of my team. I am even more grateful for the people who ask “How are you?” when enquiring about Laurna’s Myasthenia. All these people give me the opportunity to talk if I need to (I don’t want to talk about it…but…) or distract me when I can’t talk about it anymore.

At Myaware meetings, I’ve been  encouraged to hear stories from people who have recruited their children onto their team to help around the house, neighbours to give those children lifts to school or family to step in and provide some respite for partners who maybe just need a personal night to themselves. Every contribution is one less thing for you to do which can really make a difference. Despite how much you might try, you can’t be everywhere and do everything. And it’s ok not to want to be either.

Sounds great but what do I need to do?

Communicate. Like any good team, you can’t expect to win a Grandslam without an understanding of what is required and some practise (Ireland are just giving the other rugby 6 nation teams a sporting chance this year!).

 In the beginning, I felt guilty about talking too much, taking up too much time, awkward about asking for favours. Now, I am much better about telling those around me what I need and letting them get involved. Maybe I have just been lucky but my experience has been that people want to help and like to feel involved. 

I am generally quite a proud person but I had to realise that by letting people help me, I was indirectly helping Laurna. My friends are great and have been there to confide in but also to provide light relief in the form of ‘girls nights’ and weekends away. When working overseas, I have often asked them to discretely check in on Laurna to make sure she is ok. Laurna now pretends not to raise a suspicious eyebrow at their ‘out of the blue’ texts 

So don’t be afraid to ask for help and be thankful for the small gestures which make a difference. When it comes to your loved one’s Myasthenia, it’s important to look after you first so that you can look after them.

Guest blog: Elaine’s introduction 

Elaine is the partner of the author of this blog. You can read her other guest posts on the tagged page.

Laurna is the writer but I’m going to try something out of my comfort zone over the next few blogs. You see personal/creative writing is not a strength of mine. My friends often joke about how formal my writing is – it often includes a bunch of ‘thereins and heretofores’. If you can bear with me I will try to lend a different perspective on living with Myasthenia because in any household, Myasthenia is a team effort.

When Laurna was first diagnosed, the prospect of ‘our household’ was still an unspoken future hope. Laurna and I had been together for about 6 months when she started experiencing symptoms. The insecurities that naturally come with a relatively new relationship seemed to be magnified as I simultaneously worried about being suffocatingly attentive or appearing aloof in an attempt to give some space. 

Another  year and six months on and Laurna was being wheeled into an operating theatre in her hospital nightgown to have a Thymectomy. I have never felt as useless as I did that day putting her care into the hands of complete strangers. 

In the days and weeks after the operation and despite initial stubborn objections, I was able to help out more and we found humour in most things from the ‘sexy’ hospital gowns to making up outrageous stories to impress people about how she got her scar (did I ever tell you about the time Laurna got into a bar fight with a shark?)

 Two years after the operation and we have settled into our usual Myasthenia related routine. I give Laurna a hard time about reducing her medication, over-exercising and not getting enough rest. She is mostly appreciative of my perspective and I usually know when to back off. It can be a hard balance to achieve and continuing to find that sweet spot can be a delicate task.

 I have also had to really improve the relationship with myself over that time to be strong physically and emotionally so that I can cope with all the things Myasthenia, with its almost comedic inconvenient timing, throws at you.

 Over the next few days, I will give some examples of the kinds of things that work for me. 

Retrospect gives 20/20 vision and these observations, while seemingly straightforward now, were not always so apparent. Of course, all experiences and relationship dynamics are different.

From attending the Myasthenia events, I have met the most amazing Mothers and Daughters, Friends, Husbands and Wives etc. Hopefully most people will find something to relate to over the next few days, regardless of the capacity in which you support someone with Myasthenia.

364/365 – What’s next for 365 days of myasthenia

And so, the end is near and so I face the final curtain (the longest farewell ever, right). Before I stop blogging in the way you’re familiar with, I want to remind you of what I’m hoping to do moving forward and how you can get involved.

After a year of writing about me and my experiences coping and battling with myasthenia gravis, I want to hand this blog over to you. I had originally thought we could do a week of other people blogging but that’s a lot of commitment. So instead I’ll be looking for guest posts. I’ll continue to post too – mainly when I have something interesting to share.

Calling all aspiring bloggers

Whether you have MG, are the loved one of someone with MG (be it father, daughter, partner, friend, employee…) or have only recently heard of MG, I’m looking for guest blogs about what the condition means to you and how you deal with it. 

The rules

  • Subject: It can be a guest blog about one day/week/year of life with MG, the story of your/your loved ones’ diagnosis or about a specific part of your life: I’m very open to ideas although the one thing I’ll be reluctant to publish is a piece that just moans
  • Word length: I’ll be looking forj blogs to be between 300-800 words
  • Editing: I reserve the right to edit blogs down to a readable size and for grammar/spelling purposes. I’ll also edit blogs to make them more digestible if I receive a giant block of text 
  • Pictures: please feel free to send photos over to insert into the blog being clear about where you think they would be best placed. As you know, a picture can be better than 1,000 words sometimes

Are you ready to blog?

If you’ve read the above and think you’re ready to submit/discuss a blog you’d like to write, just email me at laurnacr@hotmail.co.uk

337/365 – Counting my blessings this Christmas

Finally…I’ve made it to the end of my year in London and I’m on the train home. After the usual stop-start crawl out of this sprawling chaotic capital, the train has found its flow and I’m hoping it’ll inspire some flow from me too. 

While we’re waiting for that, I can tell you that I’ve just had an overwhelming flood of gratitude. I’m grateful that I’m heading home to my family, to my friends and to a place where I can rest and think clearly. I’d be extremely lucky to have any of those things to come home to but to have them all makes me feel blessed. 
Nothing is more sacred than the people around you and for the first time in years I’ve written cards this Christmas. Proper cards – with two sides of thoughtful words and a request to hear news back. It can be so easy to let relationships slide in this busy world, but I plan to fight this in the new year and thought I’d start early.

On the dark days of MG it can be hard to think outside of its high walls, but take a moment to count your blessings this Christmas. 

334/365 – What do you admire?

What do you admire? I was confronted with this question today on a shop sign and it made me pause. How often do we take a step back and think about what we admire? I know that I don’t do it enough. This time of year, as we think about endings and new beginnings, is a great time to do so. As I consider the imminent end of 2015 and this blog, one of the things I’m full of admiration for is the strength of the myasthenia community. 

This year I’ve got much closer to many people in the MG community as they’ve opened up and shared their experiences with me. 

There are so many brave MG warriors out there who:

  • Put on a smile for their family day after day
  • Allow themselves to be vulnerable 
  • Confront their condition most days in the mirror
  • Have to adjust to a different life than they thought they would have
  • Fight to fundraise for research and awareness
  • Find the strength to support others with the condition
  • Battle through childhood and their teenage years with this condition that sets them apart

And so much more. My admiration for the people I’ve had the privilege of getting to know better this year, and the strangers who find the strength to battle on each day, is boundless. 

Part of this admiration is captured in the video I made about the Faces of Myasthenia. I hope to be able to do much more in the New Year. 

285/365 – Desire and myasthenia gravis

According to Buddhism to desire something means that you suffer…and that’s why I’m not a Buddhist. Those following the noble path would say the desire to have keeps one in a state of dukkha – suffering – and that creates samsara – a cycle. Yet I find that when I really want something, I feel alive. My mind is focused, my body alert and each step I take is about getting me closer to the goal. To say it’s about chasing the next thrill or the next material object cheapens that beautiful, heightened awareness and focus I get when I desire.

So how does myasthenia gravis affect desire for me? In a few ways:

1) Fatigue dulls desire

There’s no doubt about it – when you’re exhausted, you have less energy to desire. It can dull desires and therefore dull the sense of being alive. Regardless what that desire is, being tired makes you focused on simply achieving the basics. Desire for sex, desire to learn something new, desire to help others – all of these things can feel like extras that you just don’t have energy for. When it comes to sex, it is particularly important to communicate with your partner so that they know it’s not about them. Read more about sex and myasthenia gravis here. 

2) The shift in desire

Because of the points raised above, the things you desire before may no longer feel as important to you. You may now desire simple things that you didn’t have to think about previously – basics like desire to have energy, desire to have strength and desire to sleep well. 

3) The pain of desire

It’s human nature to want what you can’t have and Buddhism can feel more relevant when you desire things that are no longer attainable for you. Particularly if these things were once not out of reach. 

Acceptance and refocus

The acceptance of these shifts when it comes to desire can be difficult, but it can also help you focus on what’s truly important moving forward. The key point is to save energy for those things that matter the most to you and things that keep you in a positive mood. I may desire working out every day (not often these days), but I know that it strips me of energy for everything else. So I allow myself certain times a week. By doing this I normally have more energy when I spend time with Elaine and also more desire for her. 

Consider what your most important desires are, which ones are good for you and how you can help yourself have more energy for these things. You may to have to let some of the lesser or more challenging ones go but it only means you’ll be giving more to the key things in your life. 

269/365 – Using digital tools to tell the myasthenia story

Following my last post about a crowd sourced map of people with myasthenia, it got me thinking about other digital tools we can use to tell the myasthenia story.

As my job is in the digital sector, I’m always investigating different tools and I’ve recently been trying Flipagram. 

So in this blog I’m passing you over to this Flipagram I’ve put together of some of the highlights of my 2015 year of blogging

The idea of taking photos every day was to show the fluctuations in my condition and this tool is a great way to give a quick overview.

I’ve used Twitter, Instagram, Vine and Facebook before this to get the message out about MG and this blog. I also want to use Ted lessons to create an animation about Myasthenia. But, as part of my raising awareness agenda, I’m going to try out a few other tools like Flipagram to tell MG stories in a more creative way.

Let me know if you’ve got any ideas for other tools to try. 

247/365 – Remembering what makes you happy and finding time to do it

When you have a condition like myasthenia, it can feel all consuming. There’s so much to think about that often you’re left with little room for anything else. It’s no wonder then that people with MG can be left feeling low and anxious. 

I’ve found to have a good quality of life with MG, it’s important to remember what it is that makes me happy. When I feel like I don’t know what that is, I try something new. If that’s not ‘the thing’ then I try something else. Sometimes it can be difficult to motivate myself and that’s ok. Each time I do though, I’m always left feeling more positive about everything including the myasthenia. 

Last night, I made time for a walk with the good company of my friend Kate down by the river – one of my favourite things to do in London – getting a bargain burrito and an episode of a TV series I’m enjoying, Peaky Blinders. The picture above is on the bank of the Thameside with some scupltures that are part of a festival being hosted there. All simple pleasures but effective in making me feel happy. Even if it’s just half an hour every couple of days to do things that make you happy, I find allowing myself that short amount of positive time makes a big difference to how able I feel to cope with the myasthenia. 

Some other things that have the same impact on me: Going to the cinema, salsa dancing (and so many other things) with Elaine, any kind of catch up with any/all of my best friends, Gemma, Steph and Sarah, reading in bed on weekend mornings, having open conversations with anyone, the endless possibilities of a Friday night train up to Edinburgh, the feeling of infinite options during Friday night drinks, having a glass of wine while speaking politics with my parents, getting out into the middle of nowhere for a walk or cycle, exploring somewhere new, long baths, the first sip of a good cup of coffee….I could go on and on.

Even just writing out this list made me happy.