Category Archives: Cooking

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. 

136/365 – Return of the lurgy

After my last successful training walk pre-Camino, I was feeling on top of the world yesterday. Or I was until my throat felt like it was being scrubbed with a Brillo pad and my nose became a leaky faucet. My right eye went a bit droopy yesterday, but I put it down to the early morning start and the fatigue hangover from the week before. Sadly it got worse during the day as the cold symptoms increased. Great, just what I need days before jetting off. 

Although I have a lot to get through before finishing work on Wednesday, I was in no fit state to commute into work this morning. The faucet pipe had burst causing a constant flood and my head felt as if it had been glued down hard on my pillow. One positive thing was that my body felt great – somehow the part of me that had exerted the most energy the previous day felt invigorated. I worked from home and, despite constantly having to refresh my tissue pile, I was quite productive. 

In a desperate attempt to rid myself of the lurgy, I made chicken noodle soup, stocked up on oranges, blasted the zinc with some baked beans and treated myself to ice cream (all a sick girl really needs). Oh and knocked back a Beechams or three.

I’m feeling a bit less leaky and heavy headed this evening, so here’s hoping the same routine tomorrow will provide a shortcut to recovery road. I must feel better, I must feel better… 

127/365 – Time to detox

I’ve had a few very busy weeks in and out of work. With a good friend of mine down to stay for a week, a trip up to Edinburgh, starting a new volunteering adventure and working long hours to prepare for the election/new administration, I’ve been feeling worn out. Due to this lack of time to myself and lack of energy, I’ve been eating poorly. My gluten and dairy free diet has been put on hold while I’ve just been grabbing whatever is most convenient. I’ve been living on ready meals, packet sushi and sugar fixes. As a result, my body has felt poisoned and I’ve noticed a difference in my mood, my energy levels, my attention span and my performance when I’ve been training. 

This weekend I’ve decided to cut back on the rubbish I’ve been eating and try to get back to the health kick I was on just a month ago. Even if it doesn’t last right through next week, when work gets mad with the new administration, I’ll feel better for giving my body the nourishment it needs.

  

75/365 – Beginning of the myasthenia journey

As I mentioned in my eight ways myasthenia gravis has shaped me for the better post, being part of the MG community has helped me cope in many ways. On Thursday night, I went along to a Myaware Young Generation pizza making evening and it was great to get a chance to meet some new faces (as well as toss pizza dough in the air and eat far too many dough balls). 

The events I had been at up until Thursday had been dominated by women – perhaps because the condition tends to affect females at a younger age. However, I met two lovely men with myasthenia on Thursday evening. Both have had MG for a long time and were open about the trials and tribulations they have faced as we sent flour flying and slathered our pizzas in numerous toppings. 

I thoroughly enjoyed spending time chatting with them and think both should consider themselves role models, not just for men with MG but in general. I say this because they seemed very comfortable talking openly – an issue British men are notorious for particularly around health issues. As they have far more experience with the condition than I do, they were both supportive and empathetic when I was talking about my recent concerns. They provided advice and discussed gently things I should prepare for. It is this kind of peer support that is invaluable and they silenced any doubts I had about attending the event.

Speaking to them made me realise that, although a year and a half feels like a long time, I’m only in the very early stages of my myasthenia journey. With this in mind, I must continue to develop my Buddhist-like lack of attachment to the good times in preparation for the inevitable fluctuations of the future.

It also made me realise that developing lasting connections in the Myaware community is important as there will be times when others with MG will be best placed to offer support and advice. 

  

53/365 – Struggling with the new diet

As it’s been 15 days since my diet update, it’s time to admit that I’ve been struggling with the new gluten free and dairy free lifestyle. 

With work picking up and my evenings and weekends filled with exercising and catching up with friends and family, it’s been really tough to maintain. 

One of the easiest ways to socialise in this cold weather is to go out for dinner. In the last fortnight I’ve eaten out more times than I had in the rest of January and February put together (a whopping six times). This is due to having visitors (which I love) and my London friends suddenly feeling sociable again after the January blues/skints. In my experience so far, restaurants are generally terrible at providing GF/DF options – the one exception to this is my new favourite London Tapas place, The Port House. However, I’ve not been seeking out the healthy options either – on Monday night I went for a cheese burger in one of our local pubs. Not exactly the closest option to GF/DF.

Alongside eating out, with my days becoming busy again, finding time to shop in health food stores for specialist products has become more difficult. Finding time to prepare dinners for the next day and to research new recipes has also become a struggle.

I think this is a key point – rather than expecting these things to happen magically, I’m going to have to be proactive, and plan time in my weekly schedule, if I want to continue with the GF/DF.  

I’ve also found with tiredness setting in, I tend to get more tempted for sugary gluten and dairy treats during the late afternoon slump and in the late evening. Today I plan to spread my ample snacks out better so I have something sweet, probably my dairy free dark chocolate, left come 3.30pm when the cravings start. 

So how am I feeling about the slip?

I’m trying to be kind to myself as I’m not even a month into the new job. Thankfully I’ve not gone off the rails completely and, while the slips have been more regular of late, I’m still predominantly eating GF/DF. 

Now that I’ve acknowledged the struggles, hopefully with better planning, less food related socialising and a bit of willpower I’ll be able to continue with the experiment to see how it affects the myasthenia gravis. At this point, I don’t think it’s fair to say.


52/365 – Cooking with myasthenia gravis

While I have been lucky so far that my limbs haven’t been affected by myasthenia gravis, other than occasional heaviness and tingling, it may not always be this way. MG changes over time and when your arms or legs are affected I’m told everyday tasks can become very difficult. This ties into the spoonie theory post from yesterday. I’ve heard stories of people having to crawl or slide down stairs and, even worse for me, where lifting kitchen utensils becomes practically impossible. 

 It’s not that I’m going to be entering Masterchef any time soon, but cooking is both therapeutic and rewarding for me. I look forward to making dinner after a long day at work – almost as much as I look forward to eating the food I’ve cooked. I love having people over for a home cooked meal, taking my time trying new recipes at the weekend or putting together a brunch spread to enjoy over a few hours. I love food and, by association, I enjoy cooking. 

 So how would I cope if my arms became weaker? It falls into the you can’t worry about every eventuality category for me. At present, the worst I get is after a hard workout I may struggle to open jars or cans. If it did get worse, there is guidance for how to stop your arms getting too fatigued while cooking online.

The best tip I’ve read so far is cook in batches when you’re feeling strong.

The other side of this is MG can cause difficultly chewing and swallowing, which impacts what you cook and eat. 

Helpfully Myaware is putting together a recipe book. This will contain dishes that can be made without causing fatigue – both in cooking and eating. They are being provided by people with myasthenia who have tried and tested them and if you have a recipe you’d like to submit, you can email Sarah.hindley@myaware.org.

I leave you with a photo of my dinner this evening (I told you Masterchef isn’t going to be calling me anytime soon) I’ve not long finished making tonight’s meal – as my friend commented recently we are often on Spanish time here as we don’t get home until late and then start to make dinner.