Tag Archives: family

88/365 – Feel Good Friday

So today I’m reminded of how much better a long lie and a walk by the sea can make me feel. After another busy week, with an early morning yesterday to ensure I could fit in all I needed to before finishing for Easter, I travelled to Dublin late last night unable to feel excited about it because I was too drained. 

However, with no alarms set, I slept nine hours and awoke feeling brand new. After finishing my epic blog entry about how people with myasthenia gravis can learn from religion, we had some breakfast with Elaine’s parents before picking up her brother and his girlfriend. We then went for a walk at the Great South Wall pier. I had heard much about the place as it’s one of Elaine’s favourite spots in her hometown and, as we battled the wind to reach the lighthouse, looking back towards the two towers, out towards the mountains and over to Hollyhead it would be hard to deny the port’s charm. 

   

   

Even better than the view was the fact that I felt I had the energy and then some to tackle the walk. Again, this was refreshing as I had run 8.5km the day before but the last 2km were a real struggle for my tired body. 

I’m hoping another longer lie tomorrow will help deter any negative  affect from the wine I’ve shared with Elaine’s family tonight. Either way, it’s been a lovely day and I feel like I’m well and truly on my holidays here. 

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. 



16/365 – The right person

I touched on it briefly in yesterday’s post about Stephen Hawking, but one of the challenges of living with a condition like MG or motor neurone disease is the strain it puts on romantic relationships. In my experience, both partners in healthy relationships tend to be equally comfortable in their own skins and put feeling good about themselves first. If they don’t feel strong in themselves, the relationship suffers. Feeling this way with a condition like MG can be a challenge.

Any disease that changes you has the power to destroy self confidence. The eyes are believed to be the window to the soul, so when mine became affected I started to believe people wouldn’t be able to see me as anything other than ill. This initially crushed my self esteem.

When my myasthenia started to show through my eyes nearly 2 years ago now, it came on out of nowhere.

My other half and I had been watching Oz the Great and Powerful at the cinema not long after my 26th birthday, when I realised I was having to shut one eye to stop my vision from being double. My right eye had gone from normal to squint and, having never had any problems with my eyes before, I panicked. Thankfully Elaine had previously worked in an opticians and was still good friends with an eye doctor. Back at hers, she called the optician friend and he recommended I go to Moorfields Eye Hospital accident and emergency the following morning.

My eye took two weeks to go back to normal and, at that point, the doctors had no clue what had caused the temporary squint.

During that time, I shut my other half out emotionally to the point where I couldn’t look her in the eye. She was working away from home and I spent most of the time, when I wasn’t working, on my own. I was hiding myself away and waiting for the symptoms to pass. I wanted to do it on my own – thinking I would come back to her when I felt better about myself. When I felt more in control and able to be the strong person she knew and loved again.

Although we were friends for years first, my partner and I had been together for a less than nine months at this stage. That first year, often regarded as the honeymoon period, is a formative time for any relationship and I hated that I was adding such a condition into the mix.

One of the healthiest things about our relationship was how strong we were as individuals – I liked that we had our own fulfilling lives yet we sought to make space for each other. But what I hadn’t realised was that I had been shutting her out emotionally long before the MG – I thought I needed to be consistently strong and to keep a wall around any of my less attractive emotions.

With MG, I no longer felt like the confident, outgoing and independent individual she fell in love with. But instead of showing her this vulnerability, I hid it, and myself, away.

Elaine came with me for that first set of tests at Moorfields and has offered to come along with me to every scheduled appointment since then, without fail. She was there when I finally got the MG diagnosis, after 6 months of on and off symptoms, and held me as I cried in one of our favourite restaurants.

She told me never to repeat what I’d said when I suggested that she would be better off finding someone else during the days of limbo between diagnosis and treatment when my speech and swallowing also started to be affected.

Some time during this period I realised that if I didn’t let her in, I would be pushing away the best person for me. Not only that, but it would be my fault when I was alone and full of regret. I knew that if our positions were reversed I would be hurt that she didn’t feel she could be vulnerable with me – I knew I had to trust that she could still love me.

Myasthenia changes you physically and, if you let it, it has the power to change your personality too. I’ve been incredibly lucky to have a wonderful woman by my side who has supported me endlessly, loved me even on my darkest days and never allowed me to think less of myself because of my condition.

Don’t get me wrong – there are days that she’s ready to throttle me, we still have our stubborn independent moments and our ability to give each other space has saved many squabbles. But, when either of us are having a tough time, we no longer feel like we have to hide the more vulnerable parts of ourselves away and, as far as it’s healthy, we help each other when we’re not feeling at our best. In fact, the mutual knowledge that we will take care of each other has given us a much deeper connection.

I write this not because I don’t think there will be tough times in the future, but because I know that I’m with the right person to weather those trying days, weeks and months ahead.

For anyone not sure about whether to open up and trust – the worst thing that will happen is you’ll get hurt and then you’ll move on knowing that you tried. If you don’t give someone who loves you a fair chance, regret is a lot harder to get over.

Today’s photo is Elaine and I in our thermals before going to see a Premier League football game today. I’m not sure how she does it, but she manages to look glamorous in Lycra here.

9/365 – Father and daughter time

One of the hardest things after being diagnosed with MG is telling your nearest and dearest. There are certain things you need and want from them, and, in those early days of darkness, it can be easy to forget that they are also coming to terms with the news.

The people who took it hardest were my parents. My MG isn’t hereditary, as many people ask, and they had worked hard to instil a love of nutritious food (although passing on their sweet teeth and love of vino) and regular exercise. The photo from today is my dad and I after a speedy walk to see a cross country race in Edinburgh – despite turning 70 this year a day is still wasted for him if there isn’t exercise in it.

Despite being raised in poor, by today’s standards, working class families, neither of them have had serious health problems. So the lack of an obvious reason why I’d developed MG nagged at them both.

Supporting me as she always has, my mum went into practical mode and helped with the research that I initially struggled to motivate myself to do. My dad wanted to keep a check on the emotional side of how I was coping, while desperately trying to figure out a plausible reason for me.

Since then, he’s had numerous theories about the why, which I’ve expressed is something I’m unlikely to ever find out, and he’s kept tabs on how I’m really doing. Today, as always, he told me to make sure I’m drinking enough water to ‘flush the drugs out’ – I haven’t had the heart to tell him if I flush them out I’ll be struggling to speak, swallow and see again. He also was asking about my next appointment with my doctor, saying I needed to push him for answers about why the thymectomy hasn’t worked. Once again, I explained it can take 2 years for the full effects to show.

While the theories and questioning can be frustrating at times, I force myself to remember that this drive to get to the bottom of my MG comes from his desire to help me find a way to live a full life. He wants a cure for me and if my parents love could make one it would be goodbye myasthenia.