178/365 – Being silly in the sun 

Today I have been rather silly during the start of this heatwave. Travelling to Birmingham for work, the room we were booked in for the day was extremely hot and stuffy as the temperature soared past 20. After lunch, we decided to take our meeting outside and sat out in the sunshine for the afternoon section of our discussions.

As I wrote about in post 68, taking aziathioprine increases your chances of getting skin cancer. Therefore, it is essential to cover up skin, with either clothes or factor 50, when the sun is high. In my rush to catch my train this morning, I forgot to pack suncream and spent far too long catching rays unprotected. 

This is another example of things I’m jealous of – people who can enjoy being out in the sun without worrying. While everyone should use suncream, it is less dangerous for some people not to.

Thankfully, I’ve learned my lesson from today – I think I’ll have a few nasty sunburn marks tonight.  For the rest of this heat wave week, I will be careful to carry my sun block and a light long sleeve shirt wherever I go. 

177/365 – Jealousy and myasthenia gravis

Yesterday, while on my Irish retreat, I visited Belvedere Castle. It has ‘one of Ireland’s greatest follies’ – the jealously wall. The faux medieval wall, which I’m pictured with above, was erected in the 18th century by Robert Rochfort to block out the view from his country home to his brother’s bigger house. This roguish Lord, who locked his wife up for 30 years on spurious charges of infidelity, got me thinking about jealously in general and in relation to my MG.

Jealousy in large, uncontrollable quantities is destructive – it breaks down relationships and reasserts feelings of low self worth. It can literally make you put up walls to block out others. In small doses, it can also be healthy for relationships – making you grateful for what you have – but keeping it in balance is difficult. 

Elaine put an interesting spin on Lord Rochfort’s wall – she said it was a defeatist decision. If he felt that strongly about it, he could have tried to compete with his brother or found things that were better about his house. He really should have stopped thinking about his brother’s luck and instead appreciated his own. As you’ll see from the picture below, he had a view most people would be more than content with.  

 Appreciating what you’ve got

As a competitive, ambitious person, jealousy is something I’m very familiar with. I’ve spent parts of my life being filled by it and those times were deeply unhappy for me. I could not see what I was lucky to have, nor could I develop my own strengths, because I was too busy focussing on what I lacked that others had.

I only found the answer to keeping my jealousy under control when I learned how to focus on my strengths, challenge negative voices in my head and distance myself from negative voices around me. 

Jealously and MG

When I got diagnosed with MG, I felt myself full of green envy once more. I was suddenly faced with a different future and I wanted my old one back. I was full of anger towards those who were unburdened by hospital visits, erratic symptoms and constant doubt about what tomorrow might bring. 

I didn’t blame anyone else for having this, it was my own fault, and that made the jealousy even worse. As a destructive force, it feeds on your own most negative thoughts and, at that stage, I was full of them. 

What am I jealous of:

  • people who can completely switch off and not worry about when to take their medication or when their next blood tests are due.
  • people who don’t have to take free healthcare into consideration when thinking about relocating.
  • people who can go travelling without checking whether the country has a yellow fever warning and without getting special travel insurance.
  • people who can go out partying and not be completely floored the next day.
  • people who don’t have to worry about passing their faulty genes on to their children.
  • people who can predict that if they look after themselves they’ll be and look healthy.

Get over it

So how did I get the jealousy under control the second time around? Once I was over the initial shock, I looked at what in my life had changed. There is more time spent in medical environments, and I had to take medication everyday, but I’m still able to do most of the things I could before. 

Once my voice and squint eye symptoms were under control, I no longer felt as self conscious. And even when I did, my good friend Anna told me the symptoms disappeared for her within seconds of being with me. 

I began concentrating on what I wanted and wanted to be, but this time I had more focus. I felt more in the moment and grateful of what I had.

Keeping jealousy at bay is an ongoing process and, if I start to feel negative towards myself, I can feel it creeping back in. However, having MG has helped me focus on what really matters – making every day count and being grateful for everything I am lucky to have.

176/365 – The plan is to relax

As my weekend schedule from now until August is manic, I took Friday off work and am resting up until Sunday in Ireland’s Westmeath. 

This break is with Elaine’s family and is set to be very chilled due to the remote location (read there is nothing to do here). The plan is to take a deep breath together – spend time going for walks, eating good food, drinking a bit of wine and taking advantage of the leisure facilities. We’ve already spent some time in the pool, jacuzzi, sauna and steam room together and plan on a group facial tomorrow morning. Everyone needs a bit of pampering from time-to-time.

It’s difficult to find time for weekends where the only agenda is relaxation, but when I do take the time they are never long enough. Sitting back and taking a breath is so important and I’m already feeling better for doing so this weekend. 

175/365 – Diet goals

So around six months after setting myself some challenging diet goals, I’ve fallen back into some unhealthy habits. As this post from January sets out, I did some reasearch into the food groups that could be causing my body additional strain and inflaming my MG.    The product of that research was a gluten and dairy free diet cutting down on red meat and sugar. It was a tough ask and right from the start was meant to be a trial to see how my body responded. 

I’ve been consistent in two of the challenges and failed miserably at the other two. 

My success stories are:

  • I’ve replaced gluten and wheat products for free from alternatives and have stuck to this pretty consistently with a few occasional glutinous treats here and there. 
  • I’ve significantly cut down on my red meat consumption and very rarely have it now. 

My failures are:

  • While I’ve replaced yoghurts for soya alternatives, and for a while switched cows milk to the almond substitute, I struggle to exist without cheese and semi skimmed in my coffee. While I’ve tried to eat goat’s cheese wherever possible, sometimes a slice of Roquefort or Brie is just too damn tempting. It turns out life is too short to deprive myself of good cheese and good coffee.
  • I have failed spectacularly at cutting down sugar. I have succeeded in switching my work time sugary treat to 70% dark chocolate and Nakd-type bars which are made of natural sugars. But, it’s in the evenings that I’ve struggled to have resolve. This continue failure of giving into cravings, often absent mindedly, has shown me how severe my sugar addiction is. I struggle to get through a single day without some kind of sugary treat – I hate feeling that anything has control over me but I think this well and truly does.

Aside from these points, I’ve also been more conscious about the amount of potassium and magnesium I’m eating. This has been relatively easy as I tended to eat a lot of things containing these anyway, but now I’m just more conscious of it.

What’s next?

I’ve looked at a few different options over the last six months to see if there is a better diet out there. I’ve looked at low carb options, like the ketogenic diet, as someone in the MG community said it had worked for them. Personally, the more I looked into it the less sure I was. I’ve also looked at trying the 5:2 for a short term fix as eating little for a couple of days is meant to give your body time to heal and recover. However, it would be difficult to do this and not feel sick with the amount of medication I’m taking at present. 

While I’ve come to terms with the fact that diet alone isn’t going to control my medication, when I eat healthily I definitely feel stronger and better. I’m going to stick with the gluten free and no red meat. Most importantly, after this weekend I’m going to try to get this sugar addiction of mine under control.

Read more about diet and myasthenia gravis here. 

174/365 – Repressing emotions and myasthenia 

Last night at Childine, I had a conversation with one of my fellow volunteer counsellors which got me thinking. This lady has MS and was saying her symptoms are really bad at the moment. She spoke about flares in the past in relation to loss and grief and so it was no surprise when she mentioned that someone close to her had passed away last week. Despite normally being able to control the condition with vitamins, at times like these nothing except waiting it out seemed to help.

This was something I had heard before    from people with myasthenia. When something traumatic happened in their life, there was also a spike with their symptoms. The ebb and flow of the condition linking up with the circle of life.

I could tell this woman was trying to be strong with her grief – she was containing it. She spoke about it as if looking at it from far away. While one of the first things we learn when counselling someone who is grieving is there is no wrong way to do it, I couldn’t help wondering whether shutting down your emotion during such trauma meant it creeps out in a physical way. In the case of someone with a condition like MS or MG, that would impact your symptoms significantly.

Of course there are other factors at play – during such grief there is less inclination to look after yourself. Taking your medication on time and eating and sleeping well become secondary to your pain. But I do wonder whether our stiff upper lip culture of bottling up our grief rather than letting it out makes living with a condition harder in times of strife.

173/365 – Stronger than yesterday

I apologise for the cheesy titles – it’s fitting for the rest of the content in this blog in afraid. Using this trashy pop reference, and smiling as I sing the rest of the song in my head as I write this, is testament to how much better I’m feeling. The upturn is due to my well documented increased steroid dose on Sunday. I’ve been so stuck in blue that any thought other than how bad I’m feeling, and how little motivation I have to do anything about it, has been warmly welcomed. 

This week I’ve had the energy to socialise with friends in the evenings, had more drive at work, felt my mood improve and been able to appreciate the little things. I’ve felt motivated to push myself with exercise – I even caught myself smiling through some sprints today. That looked pretty insane, if I’m honest.

Whenever my thoughts revert to the fact that I’ll have to go down again, and possibly have to go back through the same low, I’ve been shutting them down. While these things are true, they are also not helpful and are killing my buzz. For now, I’m going to have a little skip and a dance. I might even stop and smell the flowers. As I promised cheesy content, I leave you with this nugget of grade A Stilton…I feel like I’ve got the real me back.

172/365 – Making sure your loved ones have support

Myasthenia has several negative implications, and if you look carefully positives ones too, for people diagnosed with the condition. However, it also has an impact on those around you which sometimes can be easy to forget with the all hospital appointments, blood tests and medication switching.

Last week, at the Young Myaware Group, one of the members spoke openly about the impact a parent getting diagnosed has on a child. It’s one thing if you’re mum and dad have always had it and you are brought up used to the alterations life post MG entails. But what about watching your healthy parent transform before your eyes – bloating on steroids, weakening from lifting a limb and not being able to read you a bed time story any more because of speech difficulties.

Then there are the partners and parents of people with myasthenia who have to watch the same transformation helplessly. They also are more likely to have to deal with the psychological impact of the condition – the mood swings, lows and restlessness that the drugs can create. 

It’s important to allow those who care about you space to grieve. In my case, I’ve also found it’s important to allow those loved ones to help wherever they can. It decreases their feelings of helplessness and also allows you to be vulnerable and to be shown that people still care. 

Make sure the people who look after you are looked after too

While there is lots of support for people with myasthenia through Myaware and other communities, it’s also important that those loved ones have support of their own. Whether it’s a group of friends who can help keep their sense of perspective, a child speaking to Childline or a school counsellor or even an organised group/activities for the loved ones of people with myasthenia. 

There was talk at the meeting of organising a Myaware picnic so that member’s friends and family can speak to others in a similar position. If there is not something like this available in your area, and you feel there are people in your life who need it, why not set something up?

171/365 – Eyes wide(r) open

Fed up with feeling low and having a droopy right eye, on Sunday I decided it was time to stop being a martyr. I had given my reduced steroid dose two weeks and there was no sign of improvement. I could battle on blindly, and dream of the day my symptoms come under control, or I could help myself feel better. An easy choice. I increased my dose and waited for the magic to happen.

By Sunday night, my eye, and mood, had lifted. While I only allowed a 1mg boost, it was already making a difference. 

Despite a late-ish night, my eye has lifted again today. Although not quite at normal yet, I’m hoping, as my body adjusts to the slightly higher dose, all will be rosy again soon. I’ll get my symptoms back under control and have a bit more stability with my moods. That stability would be more than enough for me at the moment. This weekend I’m off to see Elaine’s family so it would be a steroid miracle if my symptoms were under control by then.

170/365 – The beginning of my myasthenia journey

This weekend, while doing some de-cluttering, I came across some of the original letters I received from Moorfields. The one below was sent not long after my first panic-stricken visit to London’s eye hospital. Seeing it brought back memories that I haven’t shared with you – the first flirtatious with myasthenia (although I didn’t know it at the time).  

  

So I was working late again as I had done on many Friday evenings since moving to the capital. Packing up my things too late to really make much of the night, I went to change into running clothes for the trip home. It was then that I noticed there were two of me in the mirror. Or not two so much as two half versions piled on top of the other (like the image of Steve Buscemi below). Even if I had seen this four eyed version of Steve Buscemi in the mirror behind me, I doubt I would have panicked as much as I did.

 
Relax, I thought, it’s probably just from straining – It’s been a long week. Run home and see how it is then. I picked up my things as quickly as I could and busted out of there – in a sprint before I had left the building then realising I had forgotten the office alarm.

Pounding the pavement. Closing one eye and another to see the world back in single vision. My eyes tiring from the strain of being forced shut – who knew you could work out your eyelids to failing point. 

Getting in and trying to tilt my head in different ways to see a singular world again. Hiding it, adapting myself, being sure that it would pass.

By Sunday it had not passed and I was scared. I spoke to Elaine about it after the film we had been watching , Great and Powerful Oz. The 3D glasses had been a perfect cover for me having to shut one eye to experience the film as it was made to be seen. But I knew something was wrong. She phoned her optician friend and the next day I sat in Moorfields awaiting my fate. I had really overdone it this time.

My fate that day was a lot of tests – blood tests, vision tests, reflex tests and even a brain scan. The numerous doctors and nurses I saw passed me on without care – eventually I was shown to a room where a specialist fitted a prism in my glasses to rectify my vision. It worked a little but made me feel like Deirdre Barlow (God rest her soul). Worse of all this person was cold – I felt like a hindrance. Why couldn’t I just be an easy fix? For the first time, of many to come, I broke down in Elaine’s arms. 

That day left me with only the knowledge that I had palsy on my sixth nerve on the left side of my left eye. 

I went back a couple of times to Moorfields over the coming weeks, but they had no answers. I was told the nerve palsy would likely disappear within two weeks and it did. I was so thankful for that promise coming true – so relieved that I was back to normal – that I ignored the mild double vision over the coming months. 

It wasn’t until September that my double vision came back full swing and I knew what to do. I was seen at Moorfields almost straight away and told I had myasthenia gravis for the first time. In fact I could have found out in April except they sent the letter to the wrong address and I wasn’t registered with a doctor at the time. 

I’ll go more into the exact details of the night I found out about myasthenia soon but something inside me knew my life would never be the same again. I adapted, as we are born to do, but I also feel like I will re-live those two separate moments for the rest of my life. 

169/365 – Am I doing the right thing?

So after two weeks of waiting for my body to adjust to the lower dose of steroids, it just hasn’t happened. My mood is still terrible, I’m feeling drained and my eye is significantly affected. My consultant told me to listen to my body and I have to admit it just doesn’t feel ready to be at this low dose. 

I’ve stuck it out for two weeks and, in truth, it’s been horrible. I can’t remember feeling this low and drained. I’ve had to cancel going to a friend’s hen party in Scotland this weekend and didn’t even have the energy to make it up to spend time at home. I just didn’t have it in me. Today’s picture sums up exactly how I’m feeling. 

After speaking to my colleague, whose son has CMG yesterday, I’ve decided to put my steroids back up a bit from Monday. She raised the point that I should only be stepping down if my symtoms are under control and they clearly are not. Sure, it may mean I’ll have to go through this again but I’m obviously not ready for the next step yet.