Category Archives: Forgiveness

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.

359/365 – ‘Understanding’ Myasthenia Gravis 

For most non-medics, understanding the complicated information given during a diagnosis like Myasthenia Gravis means being abandoned in an unfamiliar world. If you’re lucky, you’re given brochures or steered towards helpful online guides by medical staff. But like anything new, to begin with it’s completely overwhelming. I remember looking again and again at information on MG during those first few weeks and months desperate to understand. I couldn’t speak the language of this new world.

Given time to acclimatise, you start to learn the key terms (many of which are here in my A-Z) and a way of making sense of it. To this day the way I describe it is similar to how I have from early on: ‘my immune system has gone rogue and is attacking itself. It particularly likes the weak spot between muscles and nerves’.

If you’re anything like me, you dont feel like you fully understand the condition and you’re not sure you want to. But what you do try to understand is what MG means to, and for, you. Because objective knowledge about the condition makes it incredibly hard to keep positive through the lows – whereas knowing your own version allows hope to remain. Everyone is different but my advice for anyone desperate to understand MG would be try to get to know it on a personal level.

255/365 – Bullying and myasthenia

After conversations at different Myaware events, I have endless admiration for those who are diagnosed with myasthenia (or congenital MG) in infancy, childhood, during teenage years and as a young adult. As a mid twenty, being diagnosed with MG was bad but I had a relatively firm sense of self by then. Most days, I could brush off unhelpful/nasty comments, stares and what I read to be looks of revulsion. Now, I’m surprised when I notice one of these reactions. However, I dread to think what it would have been like for me at a younger, more insecure, age.

At one of the meetings, I was chatting to someone who has had the condition since she was tiny. She shared stories not of childhood, but of being away from home for the first time at university. Sounding similar to anyone’s worst nightmare of boarding school, her dorm mates ridiculed her relentlessly and always made her feel apart from the group. She was tormented and made to feel inadequate – from the way she spoke about it the experience haunts her still. 

The rejection of who you are by others is sadly one of life’s shared experiences and both kids and adults can be cruel in this regard. As an adult you learn to shut down those who are malicious, but childhood experiences stay with you. Even as you try to understand where these comments come from and acknowledge that so often it’s about the other person and not you, it can be difficult to do this with wounds embedded from a young age.

If you have a young one with MG/CMG, it’s important to remember how hard it is to be ‘different’ as a child . Speak to them about their feelings around this and, if they won’t speak to you, encourage them to speak to Childline or an equivalent. 

It’s also important to praise their strength of character for coping at such a young age and generally just lavish praise on them. They definitely deserve it. More than anything, try to recognise their strengths and tell them it’ll make them more able to cope with the difficult times in life as an adult.

As an adult, the words and feelings of being bullied about your MG/CMG may stay with you but it’s important to be kind to yourself. What would you say to a child going through the same things you did? If that is different from what you would say to a younger you, you’re being too hard on yourself. Make peace with the past by looking at it objectively – once again it’s more likely that the bullying was about the other person/people and not about you. 

241/365 – Checklist for when you first get diagnosed with myasthenia gravis

It occurred to me today, while finally getting around to sorting out my driver’s license, that it would be really helpful to have a checklist of things to do when you are first diagnosed with myasthenia. The first few months after diagnosis are very confusing and I know I would have appreciated anything to make it easier. I’m pictured above in my first months of MG unable to take my sunglasses off even at night. Here’s me today.   

Below is the work-in-progress checklist for people in the UK (please get in touch if there’s anything I’ve missed and I’ll add it on): 

  • Book an appointment with your GP: If you haven’t already done this, book an appointment with your doctor so you can get referred to a neurologist/specialist/consultant. It’s also useful to update them about your condition as it’s likely you will be getting your prescriptions through them.
  • Allow yourself time to grieve: No matter how you take the news about having myasthenia, allow space to grieve in your own way. The worst thing you can do is be hard on yourself at this time – whether you can’t stop crying, you’re numb or you want to fight it head on, be kind to yourself during the acceptance process. 
  • Identify support – No matter how cool you think you are with the condition, it’s important to have people you can lean on during the weeks and months that follow. 
  • Get involved in a support group: No matter how many supportive people you have around you, there are certain things they won’t be able to fully understand unless they have myasthenia. Getting involved in a support group, like Myaware in the UK, can help you through the process of acceptance. If you don’t feel strong enough (physically or mentally) for a meetup, you can get involved online via the various Facebook groups.
  • Read up on your condition: Myaware has lots of information on myasthenia, medication and coping with your new condition (not as scary as other material you may get when you google).
  • If you’re struggling to cope, get free counselling: If you are struggling to cope with your diagnosis, Myaware offers free counselling to members or ask your doctor about free NHS counselling. It’s a big change and it’s ok to ask for help to get through it.
  • Notify the DVLA about your condition: If you drive, you’ll need to fill out a CN1 form to alert them about the change in your health. They will ask your consultant and doctor if you are fit to drive. 
  • Claim your NHS card to get free medication: More information about the medical exemption card you are entitled to when you have myasthenia gravis on the NHS Choices website.
  • Getting free/cheaper travel: If you are no longer able to work and/or your condition is making it really difficult to get around, you can apply for a disabled persons rail card, a blue badge if you drive and, if you stay in London, a freedom pass.
  • Remember myasthenia is only part of who you are and it doesn’t have to be all bad: When you are first diagnosed it can feel like your life is dominated by your condition due to never ending hospital appointments and doctors visit. It will calm down and your life may well get back to near enough normal. In those early days, it’s important to try to find the positive changes of your journey. Although it doesn’t always feel this way, it could be a lot worse.

That’s all I can think of for now, so please get in touch if there’s anything I’ve missed.

74/365 – Things I’ve learned from having myasthenia gravis part two

Following on from yesterday’s post about what I’ve learned since being diagnosed with myasthenia gravis, here’s the second instalment of wisdom gained.

5. Care less about what others think

As I’ve expressed many times in this blog, the appearance issues people have around the facial symptoms of MG can be the tough to deal with. You are visually different – naturally people notice that change and some will comment on it. You become more self conscious in social situations because of this. You are prepared that if you momentarily forget about the MG, you may be reminded of it by others. 

The not caring what others think thing fluctuates for me, like the MG, depending on how resilient I’m feeling. However, I’ve found the amount of time I spend thinking about/caring what others think has decreased rapidly over the last year and a half. At this point a year ago I would more often that not socialise with sunglasses on – even at night. I would shy away from socialising with people I didn’t know well and I was reluctant to speak about MG with anyone other than my nearest and dearest. As you’ll appreciate from reading this blog, a lot has changed since then.

Aside from the physical, I’ve made peace with the fact that I have myasthenia and that makes caring less what others think a lot easier. MG is still about weakness for me – muscle weakness rather than personal weakness. 

6. Be part of a community 

The times I’ve felt most conflicted in life have been when I’ve been part of some kind of community. Different personalities need different environments and I prefer small groups. I find large groups difficult  because conversation is often kept on a surface level – people in large groups tend to get uncomfortable/make jokes if things get personal. I’ve just always felt like I don’t fit in with this or haven’t wanted to perhaps. However I’ve found the myasthenia gravis community, centred around Myaware, different. 

Sure there is plenty of non-myasthenia related chat, both in the young persons group and online, but because we have something fundamental in common I’ve always felt at ease. There is no shying away from difficult topics because that’s what we are there for – support. This level of understanding, that I’ve not felt in large groups before, puts me at ease.

7. Learn to be patient

Patience is still not a strong point of mine, but I have become better since my MG diagnosis. Not just more patient with myself, but with others. I’m more empathetic when others are speaking about their medical concerns/conditions – less quick to judge, more willing to understand (or at least on my better days).

As an extension of this, I think I am kinder – to myself and to others. When evaluating who I want to be as a person, kindness and empathy are two attributes that I put high up the list. While I don’t always manage, part of the development is that I’m better at not beating myself up about the times when I’m not perfect.

There you go – myasthenia made me kinder. 

8. Communicating what it’s like to have MG 

I had a kind email a few weeks ago from an ex partner, and friend, who had come across the blog. She wrote that it was great to hear that I was able to speak/write about how I was feeling as it was something that we had troubles around in our relationship. She was right – my myasthenia has made me a better communicator. Why? Because it was too much to cope with on my own. Reaching out made it bearable and I realised it wasn’t strong to grin and bear it. Fear of rejection, being misunderstood and of the consequences of allowing myself to be vulnerable stopped me speaking about my feelings in the past, but I’ve moved past these fears. Forget what’s  the worst thing that can happen by opening up, what’s the best thing? 

So there you have a few ways that myasthenia has shaped me for the better – I’m sure more will come to mind over the rest of the year so I’ll re-evaluate this at the end of my 365 days. 


64/365 – Family reflections

This weekend I headed back up to Edinburgh to celebrate my dad’s 70th birthday. It was the first time I had seen some of my family since Christmas and so there was lots of catching up to do.

I got to spend time with my big cousin and her husband, which rarely happens outside of Christmas. We ended up my brother and I, my cousin and her hubby nursing a cocktail in one of Edinburgh’s fancy hotels. While we were sipping the delicious creations, my cousin’s husband raised the fact that my eyes were looking a lot better since when I had seen him last at Christmas. He mentioned that for the first time since my diagnosis they had looked normal but he hadn’t known whether to say or not. 

I’m sure this is an experience that most people with myasthenia have regularly. The fluctuation is difficult to understand for people who care and just want to see you looking healthy again. I could have explained that the next morning they probably won’t look normal again because of the late night and the cocktail. But he got to see that for himself. 

So how did I respond? I said I really don’t mind talking about it, which I don’t, and that he never needs to feel like he can’t comment. A contradiction from the above? I don’t believe so. I think it’s more dangerous for people to feel that they can’t speak about it with me, because then it might feel like I can’t speak about how I’m feeling with them too. Having people who care enough to ask how you’re really doing can be the difference between feeling alone or supported. 

I also had an interesting chat with the birthday boy yesterday about his impending big day. When discussing the reasons to celebrate reaching his 70th year and being healthy enough to golf every day, he mentioned it was a lot to do with luck. While we both agreed that it had a bit to do with luck, the fact that I only remember him drinking a handful of times when I was growing up, having an active job when he was young, that he’s never smoked, that he has always been incredibly active and was a war baby brought up on healthy small portions all contribute to his longevity. As one of my friends said, he’ll probably outlast us all. 

I think the luck comment has more to do with my MG and my brother’s diabetes, but we were brought up in different times. I don’t think my dad will ever stop blaming himself for our conditions and that is a real shame. The things that he has introduced into my life – particularly the love of exercise, the mental strength attached to that love, and the outdoors – have actually made it a lot easier for me to cope with the MG diagnosis. For that, along with the fact that he’s one of the most unique, hilarious and caring people in my life, I will be forever grateful. 



30/365 – Some time the hating has to stop

Those are the final words in the ‘The Railway Man’ – a film about war hero Eric Lomax’s experience of living with post-traumatic stress disorder (PTSD). Lomax went on to develop MG in his later years and, while watching the film last night, I couldn’t help wondering if he was able to forgive his own body during his battle with the illness.

From 1942 onwards, Edinburgh-born Lomax was forced to work on the infamous Death Railway, between Thailand and Burma, by the Japanese after he was captured in the fall of Singapore. He was brutally tortured
after Japanese troops found him to be the ring-leader of a group with a transistor radio. Rather than documenting the tortures he faced, the film focuses on how PTSD affected his life following those three years in captivity, about how he eventually found the strength to confront his torturer and even managed to forgive him.

After the credits rolled, I have thought a lot about the power of forgiveness and letting go. We all have events in our lives that shape us and, although I’ve been blessed with a loving family and friends, I’ve had both wonderful and painful moments that have made me who I am today. Getting the diagnosis of myasthenia is just one of those events, and the film made me question whether I have truly forgiven myself for it?

While watching Lomax’s struggle on screen, I couldn’t help wondering if the connection between nerve damage and the condition has ever been investigated. The beatings inflicted on the brave soldier were severe and, viewing those scenes, I wondered if my short-lived career as a university boxer might have played a part in triggering my MG. While I only boxed for about two years, the rigorous training and sparring used to leave my nerves twitching for hours afterwards.

Then there is the malnutrition – I have read in several places online about prisoners of war in WW2 developing MG due to the lack of nutrients in their diet. While I’ve not been able to trace this to a reliable source, it has made me consider how poor my diet was in my formative years.

These amateur ‘explanations’ are what I did in the beginning and I’ve found them to be mostly destructive. I say this because I always end up attributing blame to myself, which can very easily become self hatred. The truth is I probably wouldn’t do anything differently even if I did have a time travelling device – my moments in the boxing ring gave me an adrenalin rush that I’ve been unable to match to this day and my diet is healthy now because my palate has changed over time.

While it would be fantastic to have a definitive reason for the condition’s appearance, it probably wouldn’t make a difference in my attempt to live fully alongside the MG.

As Lomax says:

Some time the hating has to stop

Not much has been written about Lomax’s battle with myasthenia – other than misinformation about MG being a ‘muscle wasting’ condition. I have contacted his daughter via Facebook with the hope that she will be up for a chat regarding her father.

If you’re looking for a good movie to stick on, I’d thoroughly recommend The Railway Man.

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15/365 – The Theory of Everything

If you are having a woe is me day over the next few weeks, I’d recommend going to see The Theory of Everything at the cinema.

In case you haven’t heard, it’s about Stephen Hawking and is truly inspiring. We’re all familiar with Mr Hawking as he is today, but the film shows his journey, together with his first wife Jane, from being diagnosed with motor neurone disease as a 21-year-old post graduate student in Cambridge.

Motor neurone disease, like myasthenia, is a rare condition where parts of the nervous system become damaged. Unlike myasthenia where antibodies attack the muscle and nerve junctions, MND affects motor neurons which control voluntary muscle activity including speaking, walking, swallowing, and general movement of the body. So similar muscle activities are affected but usually the muscles waste away with MND which leads to disability and eventually death.

Stephen was given two years to live when first diagnosed but rose to every challenge with courage. At 73, he is still working and has no plans to retire.

While the film does show the psychological challenges of having such a condition, and the strain it puts on relationships, what shone through for me was his determination to find happiness and the fact that he never lost his sense of humour.

Some people think being happy is something that is out of their control but I have long disagreed. It’s about attitude – deciding that you are going to work hard at being happy by being content with what life offers and, most importantly, not comparing your circumstances to others. I cannot know what goes on in someone else’s life – I’m lucky to have people who love me, to have had opportunities in life and to have the excellent NHS staff to help keep me healthy.

Today’s image was me cycling to get blood tests before going to see the film. My doctors make sure I get them regularly to monitor the immunosuppressants.

I leave you with this quote from Stephen in the film when describing his theory about life:

‘However bad life may seem there is always something you can do and succeed at. Where there is life, there is hope.’

For more inspiring quotes from him, follow him on twitter @stephenhawking_

12/365 – Forgiving my body

Yesterday we touched upon the importance of forgiveness, but I wanted to go into how it relates to MG today.

As Louis Zamperini showed in his ability to do this for the camp guards who oversaw his horrific treatment as a prisoner during WW2, forgiveness is the only way to find peace with the past, and for the present and future.

No matter what you have to let go of, we all know the actual act of forgiving something or someone is a lot harder than simply talking about it. It requires courage to not allow the negatives in life to shape us and it requires a huge heart to make peace with someone who has let us down. But what about when your own body requires forgiveness?

If you are diagnosed with a condition like myasthenia when you are young, you may feel you have been robbed of certain experiences that your peers may have. Learning to forgive, whether it’s the family member that passed on the hereditary MG gene or your own body for turning on itself, is essential for coping healthily with your condition. It’s the only way to move beyond the grieving process and figure out how to make the most out of what you’ve been given.

I know this because it took me several months to forgive my body for what it had inflicted upon me. When I first found out, I felt sorry for myself and reverted to smoking quite heavily having given up for months. I also drank like a fish, worked all hours, ate a lot of junk food and stopped exercising. I told my body that if it could turn on me, then I was going to see how it felt when I reversed the cruel treatment.

However, doing this while starting on medication didn’t work so well. I believe it took a lot longer for the drugs to start working fully because of the punishment I was inflicting and within 3 months my right eye was completely closed and my left was 3/4 closed. Not to mention the fact that my speech and swallowing were still affected. My right eye has never fully recovered and I often wonder if it ever will.

So what helped me to forgive in the end? Time definitely helped, as did
being able to speak to people who love me and others with the condition about it. Finally, the realisation that made me stop behaving like my own worst enemy was that my body is a pretty incredible machine. I realised I should be thanking it for withstanding all the abuse it had taken and for reacting well to the drugs when given a chance. My body also waited until I was mature enough (excluding those first few woe is me months) to handle MG – I can’t imagine the added struggle of getting the an MG diagnosis during my angsty teen years.

I’m truth, I am able to live a full life, with the help of modern medicine, and it has gotten a lot more rewarding since I chose to forgive my rogue immune system. I never did a make up free selfie last year because I couldn’t face it at the time, but today I forgive my body enough to post this one (it helps that my eyes look near normal today and I have a post workout glow)

What a difference a week makes:

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