Guest post: the unspoken contract 

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

“Ideally couples should have three lives. One for him, one for her and one for them together”

I have always been a big believer that relationships are made up of three parts. You, your partner and the collective you. You support your partner with their Myasthenia but it is important that they support you in return. Without this equality, the triangle will collapse and it becomes more difficult to enjoy your identity as a couple. This entry is really about the most important team of all – you and your partner.

Over the last number of years, Laurna and I have, without knowing it, been defining and refining the ‘contract’ between us. This obviously isn’t a real or physical contract, more a collection of deals, boundaries or compromises agreed over time. Laurna probably has no idea that this ‘contract’ exists (sorry!) but it is a useful way for me to think about things. These are some of the ‘clauses’ that Laurna has unknowingly signed up to, to help me be a supporter 

Communicate (everytime)

It took a long time for me to trust that Laurna would tell me if she wasn’t ok. I had to become quite strong in asserting my need to know this. In considering whether to walk another stage of the Camino de Santiago last year, I made Laurna promise that she would be honest about how tired she was feeling throughout. Fundamentally, if something goes wrong, I am the one that needs to figure it out – not an easy task on the side of a mountain. This applies to all scenarios, from doing a grocery shop together to going out for a meal. If you’re telling your partner that you’re not feeling so good when you’re already getting a lift home from Tesco in an ambulance, the horse has already bolted.  

Laurna is generally really good at communicating but I know it’s not easy for everyone, particularly for men with Myasthenia who may be used to being ‘the strong one’. Allowing yourself to be vulnerable is difficult but we can’t help you if we don’t know about it.

Discuss decisions

People with Myasthenia have to make lots of decisions every day. Laurna will decide quite regularly whether to increase her medication if her ptosis is playing up. She might also be deciding whether to decrease her medication as part of her ongoing campaign to become ‘drug free’. These decisions are ultimately Laurna’s to make but they have an impact on me. In one instance, I was working overseas for a week. Laurna decided to step down her drugs while I was away. I came home days later to this frankly exhausted, depressed person. Besides from being obviously upset to see her like that, I also then had to cancel plans for the following days which I would never had made if I had known.

So little of the Myasthenia rollercoaster can be controlled. Where there is an element of choice, I think it is important to take advantage. This can apply to all sorts of things, for example, deciding on a ‘good’ time to take 6 weeks out for a Thymectomy, whether to try a new treatment or get involved in a trial. A bit of team planning can make these experiences easier and probably safer as there are more opportunities to put the right support in place.

Compromise

This is something Laurna and I work hard to achieve on an ongoing basis but the example I would like to share is not actually from our collection of stories. Instead, I came across a lovely young woman at a conference recently who was very upset because she and her partner were having problems due to their differing energy levels. On nights out with friends, she would be tired and want to go home early whereas he would be having a great time and want to stay. By all accounts, there were some fraught taxi journeys home. 

Another woman shared that her relationship was suffering because she wanted to spend their date nights watching DVDs on the couch whereas he wanted to go out together. He couldn’t understand why she couldn’t just ‘pull herself together’ and join him – surely she would feel better for a bit of air and some socialising?

Listening to this conversation was a sex psychotherapist (what a job) who specialises in couples where one or both have a health condition. She was able to share some examples of how her other clients have managed this type of scenario. Couples that were able to agree a plan in advance experienced less friction. They could agree that maybe once a month they would go out together but the other three weeks they would have nights in. When they did have to socialise, they could agree on a game plan for the evening before they left the house e.g. I’m feeling quite tired tonight so I will go for a couple of hours but you stay out/ I’m feeling quite tired tonight can we go for a couple of hours and both come home early. 

I thought these were really interesting samples of the kinds of ‘clauses’ that may appear in other couple’s contracts. Every couple is different but the one thing I think we all have in common is the need to protect the two individuals at the heart of a beautiful relationship

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.

Myasthenia and moving home

I know I’ve promised to hand this blog over to the MG community and I’ve had some posts already so thanks for those. They will be posted shortly. But it seemed wrong to let such a big life event pass without writing about it and the impact it has had on my MG.

Moving house is stressful, dull and time consuming. It’s also exhausting and that spells trouble for people with conditions like myasthenia. 

I’ve written some tips below to help limit the fatigue followed by my own experience of moving on this occasion.

Tips for moving with MG

  1. Do it gradually – try a room if you’re having a good day or just a box on a bad day. Doing it all at once will leave you exhausted.
  2. Ask for help – friends, family or even neighbours are normally more than happy to lend a hand. 
  3. If you don’t have people to help, it might be worth thinking about whether you can afford a moving company to do the work.
  4. Take what you can in bags rather than boxes -especially if you can get help putting a bag on, it’s a lot less strenuous than lugging boxes.
  5. If you can, do the actual move over a few days – it’s physically exhausting and you’re better to get rest inbetween.
  6. Pack less in your bags/boxes – it’s easier to do a couple of additional runs with lighter loads.

Moving city 

This time everything felt hard – from the clear out, with Shelter charity shop receiving 15 bags of ‘goodies’ and our friends having iron boards and roasting tins forced upon them, to the actual move, where we carted Elaine’s stuff back to Dublin by car on the ferry (6 hour journey each way) and mine back to Edinburgh by car (6 hour drive). I’m not one to shy away from hard work – in fact I’ve always quite enjoyed the physicality of the actual move – but the effort of doing it all in just over a week has drained me. 

The things that made moving exhausting for me:

  • The first thing that surprised me was I felt exhausted from driving on motorways. I’ve always found driving relaxing, but having to hold my right foot over the pedal for a long period was difficult.
  • The 6am starts several days in a row left me exhausted 
  • Clearing the stuff we didn’t want and the flat in general – probably the biggest job of the move and seemed to never end

A week after heading back from Dublin, I’ve had to up my dose of steroids for the first time in 6 months. Why? Because even though I’ve been getting long sleeps and taking it pretty easy since, I have the heavy limbs, my eye is down again, for the first time since Christmas, and my swallowing has been impacted.