Extended honeymoon

It has been a while since I’ve posted here and in truth that’s because I’ve been busy. I’ve been working away from home Monday to Friday and in my free moments I’ve been preparing for my wedding (most definitely the best day of my life) which happened in August.

More recently I’ve been preparing for my upcoming extended honeymoon.

That’s right – Elaine and I have decided to do something extra ordinary for our post- wedding break and so we’ve given ourselves up to 8 months off work to travel.

After many years of one of us working away from home, we’ve decided to start our marriage with some lengthy quality time together and to go to parts of the world we’ve dreamed of seeing:

• Nepal
• South east Asia
• South America

Far flung foreign climes with completely different eco systems and germs  – that’s pretty terrifying for a person with MG. Particularly someone who was immunosuppressed for years. 

But now feels like a good time because: 

• I’ve been in good health over the last number of months and years
• I’ve trained hard to get strong enough for the adventure
• I’m on very low medication meaning that I am able to survive without trips back for meds
• If not now, then when?

I plan to write this blog regularly when I’m away to show the highs and the lows of life on the road with MG. I’ve not met anyone with MG who has travelled for long periods and so I want to share my experiences about it (if you have, please share yours with me). But I’ll also be sharing general experiences of being on the road.

I’ll get into all the different aspects of preparation and the actual going over the next few blogs, but for now I have a 2 page to do list that will not sort itself! Pictured in preparation mode – testing my equipment in the Pentlands.

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. 

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

361/365 – The lows of blogging for a year

After publishing a post about the highs of blogging for a year, here is the other side of the story.

As I’ve already said its been a fantastic year and I would recommend it – particularly to those who want to understand their condition better. But keep the following in mind:

• The time commitment

On good days, I could write a blog in under 30 minutes during my commute. But on other days it would eat into my lunch time and my evening. Not easy when you’re working hard so it’s important to have a clear purpose. This blog has taken me an hour and a half to write in bed on a Saturday morning – all the while, Elaine has been reading beside me. I’ve missed reading in 2015. 

Due to blogging, in 2015 I often had to lock myself away to finish a blog. My friends and Elaine joked on the Camino De Santiago that I was going to my blog studio whenever I went to the toilet.  It was often true – so that I wasn’t anti-socially writing on my phone I would slip off to write today’s post.

Saying this, at the end of the year I have a ‘finished product’ (almost) and a learning tool – so worth the sacrifice. This TED talk sums up much more eloquently than I could why the time spent capturing the ‘many tiny, beautiful, funny, tragic moments in your life’ is worthwhile.

• Fear of running out of things to say

This is an obvious one and something I had thought about a great deal before beginning. There were moments during the year when I felt like I had said all that could possibly be said about MG – it would stress me out a little. But it never lasted too long thanks to the active community and the condition having an impact on many areas of life.

I found it helpful to keep a list of ideas close to stop thoughts as butterflies flying off – now that I’m wrapping up there is still a list with left over ideas.

• Taking a step back and observing

Following on from my ‘blogging on the bog’, when writing regularly I’ve found I have to take a step back and try to observe. Similar to feelings experienced during my journalism days, this didn’t always leave me feeling comfortable, mainly when I could tell (or was told) that others weren’t pleased to be written about.

Thankfully the MG community, for the most part, has been really happy with the spotlight due to the potential to raise awareness.

• Being ‘the expert’

I’ve only had MG for a couple of years, I don’t have a medical background, I’m lucky that my health has been relatively good and I’m not always the most respectful of my body. I’m no expert or role model when it comes to what’s right in terms of MG treatment or lifestyle. I’m learning from one day to the next what works and what doesn’t for living with this rare condition. But by writing this blog, I worry that I’m meant to be ‘an expert’ and have often been asked questions which confirm this fear. I even added a disclaimer on the blog.

Thankfully most people who have engaged with the blog have seemed to understand that it’s about my journey and they should seek medical advice before replicating anything I have tried.

• Use of my images

One of the guys in the Myaware Young Generation private messaged me a while back about a website I had never heard of using one of my images. It is very misleading and it reads like I have written the page, which makes me feel really uncomfortable. I’ve now asked for Myaware’s support to get the image removed, as I’m wearing one of the charity’s t-shirts.

351/365 – Dating and myasthenia

The recent discussions about TV show the Undateables, specifically the rugby player with Tourette’s and aspergers, have got me thinking this week and ready to try a little experiment…

First of all, I am allergic to the term Undateable due to the suggestion that those with disabilities are inferior to ‘dateable’, read normal, people. Being ‘Undateable’ is subjective – some people wouldn’t be who I would choose to date but others would.

If anyone ever suggested to me that I was Undateable because of myasthenia, I would question whether being shallow and rude makes someone a better catch. 

However, from what I can see, some of the show’s participants feel that they are undateable and that’s a really sad statement about the society we live and love in. 

It made me think about what dating is like now and whether people with disabilities like myasthenia are at a disadvantage. In the swipe left culture of dating apps and websites, where matches are selected entirely based on looks, where does that leave people with disabilities who want to date? 

I’ve heard many friends’ stories about their frustration with online dating for this very reason, but I think it goes deeper than the shallowness. Love is rich and complex, whereas dating seems to be just complex with a lot of waiting to see whether that person they went on one date with, who has a spark of potential, thinks they’re good enough. Unless you check every box, there is the possibility that there is always a better choice out there.

Anyway, now for the experiment. I’ve decided (if Elaine will let me) to put a symptomatic picture up on a dating website to see what the response is like. It’ll need to be one of the free ones as my budget for this is zero but I’ll keep you updated.

Do you have myasthenia and any dating stories to share?

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. 

312/365 – Maria and Zenaida

Of all the familiar and new faces I spent time with on Saturday at the Myaware Young People’s conference, Maria and Zenaida were the most remarkable. Why? Because they grew up in the same Portugese village, have been friends since they were small and both have myasthenia. The friendly pair openly shared their story with me.

Zenaida was diagnosed 16 years ago back in Portugal – she was told at that time she was one of 500 in the country to have MG. Maria knew of Zenaida’s condition but didn’t connect the dots when she started developing MG symptoms of her own. 

‘We all have such different symptoms – it’s a unique experience for each of us,’ she said.

It was only when she was telling her friend that the alarm bells started ringing for Zenaida – she told Maria to get herself immediately checked out by the doctor. 

I have heard this story often from people with MG – they have correctly diagnosed it in others around them. With it being a rare disease, sadly not everyone who starts having symptoms has a friend or connection that knows about myasthenia. Maria and Zenaida are the first pair of childhood friends I’ve met who both have it.

Zenaida has had three crises during her 16 years of life with MG, whereas Maria had her first terrifying experience of breathing difficulties this year. She said it truly made her understand how difficult the condition can be – she blacked out and woke up in hospital where she spent days recovering.

They have been supporting each other since they were young, but Maria never felt as lucky to have a friend who understands during those first days and weeks of recovering from crisis. 

While this story got me wondering once again about how we develop this mysterious condition, it also made me jealous of the easy understanding these girls share. Most importantly, it reinforced that the more people we can talk to about MG the better chance we have of helping others to identify it quickly.

So just in case you’re new to this blog – if someone tells you they have any of the following tell them it could be myasthenia gravis and they need to go their doctors:

• muscle weakness
• double vision
• droopy eyelids
• constant heavy limbs
• squint eyes 
• difficulty speaking
• difficulty swallowing
• their limbs give out 

 

 

309/365 – Myasthenia community coming together

Yesterday was this year Myaware’s Young Person’s conference in Birmingham. Kicking off at 11am, the schedule was quite busy until after 5pm.

Sadly I missed the morning activity as we got delayed coming through from London but from what I heard the presentation by Dr Fiona Norwood, of King’s College Hospital, was both interesting and made lots of the members want to transfer over to her. From the brief conversation I had with her over lunch I can well imagine how great she would be as a consultant. More about this in my next blog.

The afternoon schedule was good – with a mix of workshops, an update about the charity from Ruth (another blog on this will follow) and finally a session of Tai Chi and relaxation (as pictured below) which was definitely my highlight of the activities. Everyone who was there will long remember flying like majestic birds. 

 
For me though what made the day was the conversations with my fellow MGers from across England and Northern Ireland. There was a really positive atmosphere in the room and everyone seemed delighted to be in a place where they didn’t need to explain themselves. 

While there was a sense of support amongst the group and being there for anyone who was having a hard time, there was also lots of laugh. While some of the sessioms organised were quite serious, the company was relaxed and everyone seemed to be having fun when chatting with each other.

As I’ve said above, I have plenty more to say in the next few posts. For now though, thank you to everyone who made my trip through to Birmingham (on the slowest train on earth) worthwhile. I’ll definitely be staying over next year!

284/365 – Exciting line up at Myaware conference

Next month, people from all over the UK and Ireland will travel to Birmingham for the annual Myaware conference for people under 40. 

I wasn’t sure that I was going to attend as every weekend up until Christmas has something on for me at the moment and, just looking at the schedule, I feel like I need a break. However, the lovely community, Myaware’s Sarah and the interesting line up have convinced me to attend on the Saturday. 

The agenda is:

11am-11.15am: Coffees and Registration

11.15am-11.20am: Introduction and Welcome

Sarah Hindley, Regional Organiser, myaware

11.20am-11.30am: Icebreaker Session

Sarah Hindley, Regional Organiser, myaware

11.30am-1pm: Keynote Speech, including Questions and Answers

Dr. Fiona Norwood, Consultant Neurologist, King’s College Hospital, London

1pm-2pm: Lunch

2pm-4pm:Optional Workshops – see below

4pm-4.25pm: Charity Update

Ruth Ingledew, Chief Executive Officer, myaware

4.25pm-4.55pm: Tai Chi and Meditation for Myasthenia

Heather Lomas

4.55pm-5pm:Raffle results and close of day

Sarah Hindley, Regional Organiser, myaware

6pm-8pm: Dinner – thestudio

10pm: Taxis to the Eaton Hotel from thestudio

Optional workshops:

• Employment, Finances and Myasthenia -Steve Bradshaw, Benefits Officer, myaware
• ‘Mind over Matter’ – Robert Heaven, Counsellor, myaware
• Managing Myasthenia Day-to-Day – Mary Quirke, Specialist Nurse, John Radcliffe Hospital, Oxford
• Diet and Myasthenia- Farah Suleman, Dietitian, Queen Elizabeth Hospital, Birmingham

The weekend away takes place on the 21 and 22nd November. For more information, contact sarah.hindley@myaware.org

266/365 – Disability network

Getting involved with different projects at work seems to be my favourite hobby at the moment -last week it was the disability network.

As part of the National Inclusion Week, the group held a planning event for the national Disability Month between November and December. My role in the communications team meant I went along to the meeting to capture the event for our social media campaign. I got sucked in. I couldn’t resist contributing suggestions to the planning event and have come away  with a handful of things to do (as I tend to).

My accidental inclusion in the group made me realise I had never considered joining. When I first joined the department,  I was faced for the first time with the choice of ticking disabled or not. But still I sought out a women’s network and got involved right away when it re-launched. I also joined the LGBTQ group out of curiosity as I had never worked in an organisation that had groups for these things before.  I never considered the disability network. Although I’ve never been a fan of labels, the term ‘disability’ wasn’t something I identified with – I certainly identified less with it than with ‘woman’ and ‘LGBT’. It  seemed to be broader and vaguer to me than ‘woman’ and ‘Gay/lesbian/bi/trans’ which of course it’s not. I think that was me showing unconscious bias there.

Now I’m involved, I’ve got to say I’m excited about it. The group had some brilliant ideas for the month and were warm and welcoming. One of the things they want to push for is a campaign about people being defined by so many other things as well as their disability and that is a concept I clearly agree with. I’ll let you know how it goes.