Tag Archives: elainesposts

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 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.