Self Management, Hobby or Habit?

 

It was timely happenstance that this post, from Pete Moore of the Pain Toolkit, popped into my twitter feed a few weeks ago – Is pain self-management a habit or a hobby?

I had been struggling with my pain levels and fatigue over the past couple of months and was beginning to realise that I had been neglecting many of the self-care measures I know help keep many of my symptoms manageable.

My “problem”, I think, is that when I feel well and my energy levels are reasonably good I act as if I don’t have a chronic illness, as if I have been cured, and fail to follow my tried and tested programme of physiotherapy, pacing and prioritising.

I had felt well and my pain levels had been reasonably low during the final few months of last year, so it had been easy to succumb to the temptation of believing that I didn’t have to do my physio exercises every day, or take my (prescribed) supplements or think about pacing. 

 I started to have the occasional bad day after Christmas, which soon grew into a flare of pain and fatigue, and meant that, by February, I was struggling to function well. I had landed in the classic boom bust cycle.

I’ve been back to the drawing board and revisited The Pain Toolkit so that I can get myself back on track. 

My self-care routine cannot be a hobby, it needs to be a habit, like (to use Pete Moore’s analogy) cleaning my teeth. I clean my teeth twice a day, every day. Cleaning my teeth is not dependent on how well I feel, it is something that is part of my day, non-negotiable – a habit.

 

Pizza sans Cheese

 

How to make great pizza, and not miss the cheese.

 

There are many reasons to avoid eating cheese. For health reasons – cheese can trigger migraines; you may be allergic/intolerant to dairy products or counting calories/on a weight loss diet. For ethical reasons – you may be cutting down on the amount of dairy and meat you consume, or follow a vegan diet.

The ethical issues of the environment and animal welfare certainly made me cut down on the amount of dairy, eggs and meat I consume, however I stopped eating cheese about eighteen months ago, when my gastroenterologist put me on a controlled elimination diet and I feel a good deal better when I don’t eat dairy at all.

Homemade Pizza is a great favourite in our household, it’s comfort food, and a staple of our celebration and party food. Pizza means cheese, and lots of it. So, it was with a good deal of trepidation that I attempted that first cheese-less pizza!

Homemade pizza is still a great favourite in our household. It is still comfort food, and still served at celebrations. Will you believe me when I tell you that I don’t miss cheese and enjoy cheese-less pizza better than a cheese-laden one? It’s true!

This recipe makes two 10/12” pizzas.

Here is how we make pizza.

Ingredients:

Pizza Dough:

Use your favourite pizza base or make a dough as follows:

½ teaspoon dried yeast

300g pizza flour or strong white flour or strong gluten free flour

½ teaspoon sugar

1 tablespoon olive oil

1 teaspoon salt

200ml water (slightly warm water is best to activate the yeast)

 

We make our pizza dough in a bread maker – it has a 45-minute pizza dough setting. We add the ingredients to the bread maker pan in the order they are shown.

If you don’t have a bread maker add all the ingredients to a large bowl and combine. Use the dough hook on an electric mixer, or knead by hand. Knead the dough for about 10 minutes. Put the dough back into the bowl and cover with a tea towel. Leave the dough to prove (rise) for about 30 minutes – it should double in size.

 

Split the dough into two portions and roll each out into a thin round.

Now you have a choice – you can either bake the bases at 200C/392F/gas mark 6, for 8-10 minutes, or put the topping on the uncooked base. It really depends on how thick you’ve made the base, how much topping you are going to add, and how crispy you want the base to be. Very thin bases with minimal topping won’t need pre-baking. A thick crust, fully loaded pizza will probably benefit from having the crust pre-cooked.

 

Topping:

½ cup tinned chopped tomatoes

1 tablespoon sundried tomato puree, or tomato puree

½ teaspoon dried mixed Italian herbs

Small clove of garlic, finely minced – or ¼ teaspoon garlic powder

1 tablespoon (approx.) olive oil

Salt and pepper

About half a jar of grilled roasted artichokes

Half a red bell or sweet pointed pepper – thinly sliced (optional)

½ cup sliced mushrooms (optional)

3 tablespoons vegan parmesan cheese.

 

Combine the tomatoes, puree, herbs and garlic together into a thick paste. Add the olive oil until you get a nice spreading consistency. Season with salt and pepper. Spread evenly over the pizza bases.

Place pieces of artichoke evenly across the pizza and add toppings of your choice. Pepper and mushrooms are always a hit in our house. You could use sweetcorn, pineapple, onion, roasted sweet potato, roasted butternut squash, rocket. Whatever you fancy.

Sprinkle a generous layer of vegan parmesan over the top of the pizza and cook at 200/220C (392/428F, Gas mark 6/7) for 10 minutes.
Enjoy!

Time for lunch – a versatile vegetable and bean soup.

 

“Ask not what you can do for your country. Ask what’s for lunch.” Orson Welles

A brisk walk in the winter sunshine was just what I needed today. A busy Christmas and a very heavy cold over New Year have knocked my energy levels significantly, so exercise has been quite low on my list of priorities over the last week or so. Today was the first day I felt motivated to get back on track, so I donned my running gear at lunchtime and marched around a steep up and down three-mile loop, accompanied by my lovely husband and dog. Lunch needed to be quick, nourishing and warm. Soup! I made this creamy, wholesome and tasty soup for two in around 15/20 minutes.

 

I used:

A large potato, grated

1 carrot, grated

1 stick celery, grated

1 tin butter beans OR cannellini beans in water

1 cup frozen sweetcorn

1 teaspoon Swiss Bouillon powder (optional)

¼ teaspoon garlic powder

½ teaspoon onion powder

¼ teaspoon ground pepper (I used white pepper)

1 teaspoon turmeric

Salt to taste

 

Method:

I used my food processor to grate the potato, carrot and celery – speed is of the essence when you’re hungry.

Add the grated veg, garlic powder, onion powder, pepper and bouillon to a heavy bottomed sauce pan, cover with water (I used boiling water from the kettle to speed up the process) and simmer.

Blend the beans in a food processor into a thick liquid. I used the water from the can but you can rinse the beans and use fresh water if they are canned in salted water.

Add the beans, turmeric and sweetcorn to the soup. Heat through, serve and enjoy. I sprinkled a teaspoon of vegan parmesan on top of mine.

 

Couch to (nearly) 5K

I have finished week 9 of the NHS couch to 5K programme. I have run for 30 minutes, three times this week. I haven’t actually run 5K yet though. The furthest I have managed is 4.4 K so I am quite slow. Laura, the coach on the programme, keeps telling me that it is distance, not speed, that is important, so I will keep extending my runs until I reach 5K.

The second run of each week has tended to be a bit of a struggle, but I have kept going each time. Today’s final run felt good and I was tempted to carry on for a bit longer. However, I decided that I should follow the plan, and my pacing rationale, and stop at 30 minutes. If I had carried on I may have crossed the threshold of doing just enough and gone into the boom bust cycle of pushing myself too far and ending up with a flare-up of pain and fatigue. There were plenty of other things to do with the rest of my day so I wanted to finish feeling energised, not exhausted. I am learning!

Nine weeks ago I struggled to run for a minute, today I can run for 30, and enjoy it! I’m happy with my progress and I am looking forward to being able to say that I can run 5K. Soon I hope!

A strenuous run, or a walk in the park?

… it depends on your perspective!

My husband joined me for the second run of Week 7 of my Couch to 5K programme. And has for each subsequent run! The programme and I have inspired him to start running again. He doesn’t need to use the podcasts as he has done a fair amount of running, (including the Great North Run – twice), just not in the past year or two.

It was great to have company, though a bit odd to be followed. He didn’t want to interfere with my pace, and he didn’t know the route so he decided to run behind me. He was very patient, plodding along behind. And as we neared the top of the uphill section of the route I’m sure he was walking – not a measure of his fitness, more an indication of my pace. I measured the uphill section; it is half a mile long!

I have now finished Week 7, and completed the first run of Week 8. We had to change the route this week. We had a lot of rain over the weekend so the path across the wheat field had become very muddy and boggy. Not pleasant or safe to run on. I have been using the route as a dog walk for years and know that as winter approaches the route will gradually get muddier and muddier, so we’ll use it less and less. Our alternative route, which I am going to call the Winter Route, is on a quiet lane. There is a hill, much shorter than the incline in the Summer Route, but steeper; and we run up it twice. It’s got to be good for my fitness, right?

I am now running for 28 minutes. With each session I have run a little bit further than the previous session, and felt more comfortable. At the beginning of last week, I ran 3.4K (2.08 miles) in 25 minutes at a pace of 7.33 min/K (12.5 min/mile). My first run of week 8 was 4.3K (2.7 miles) in 28 minutes at a pace of 6.51 min/K (11.05min/mile). I feel that I am progressing, and that 5K in 30 minutes may just be achievable – at some point.

Breakfast – eat like a King.

 

“One should not attend even the end of the world without a good breakfast”

                           – Robert A. Heinlein.

 

Breakfast has never been my favourite meal. Even as a child my mother struggled to find breakfast food that I would enjoy and it was a constant battle to make me eat something before I went to school. I didn’t enjoy cereals, and I couldn’t stand the texture of porridge. Eggs and toast were acceptable, but not before 10:30 – too late for a pre-school breakfast. My staple breakfast was peanut butter on toast – easy to carry and eat on the way to school.

Peanut butter on wholemeal toast (the best combination!) isn’t a bad breakfast. It is filling and nutritious, however, I don’t tolerate gluten very well, so it makes me feel lethargic and bloated. Not a great way to start the day.

In recent years I’ve been eating Greek yoghurt with fruit, seeds and granola. Nutritious and filling. I had got to the point of looking forward to and enjoying my breakfast meal. But then, I began to feel guilty about the food miles my Greek Yoghurt habit was clocking up, so I changed to Greek style yoghurt, produced closer to home. The benefits were that it was much cheaper than the real thing and was supporting local farming. The downside? The “Greek style” had a fraction of the protein content and was not as creamy and tasty. I went back to the real thing.

When deciding to eat a vegan diet I was worried that I would find it difficult to give up Greek yoghurt, cheese, and milk in my tea and coffee! After some experimentation I’ve found that soya milk is a perfect substitute for cow’s milk for my tea – I honestly don’t taste the difference. I have found some lovely vegan cheese recipes and do not miss “real” cheese. I have, however, struggled to replace Greek yoghurt for breakfast. I have been finding breakfast-time a bit of a struggle!

I have tried:

fruit smoothies with my homemade granola – not bad, will certainly keep this on my breakfast menu. Though won’t be eating it every day!

porridge and granola – no, still struggle with porridge. The best bowl I made was when I stirred a table spoon of almond butter into the porridge.

sweet potato pancakes and fruit – not the best. I have a stash of the pancakes in the freezer, so will come back to this one – at some point.

apple slices and homemade peanut butter – yes! I enjoyed this. An enjoyable breakfast on days when I don’t run. I need a more sustaining meal on running days.

Breakfast potatoes (see the photo above) – loved this! Will definitely have this again. Quick and easy, and very tasty as long as there are leftover cooked potatoes in the fridge.

Oat and apple cookies with homemade almond butter – yes, anything that allows me to eat almond butter! I’m going to experiment a bit with the cookie recipe as these cookies were more like cakes. I need to try and get more of a cookie texture!

All with a cup of green tea with lemon juice. 

There might be an up-side to this “struggle”, however. As you can see, it has meant that I have had a varied breakfast diet over the past month.

I would love to hear what you eat for breakfast, particularly on days that you exercise. I look forward to hearing from you…

I am a runner

I can now call myself a runner…

… so says Laura, the coach on my Couch to 5k podcast. I completed Week 6 of the programme with a 25-minute run. I am now half way through Week 7, which consists of three more 25 minute runs.

I have changed my running route. The route I have been using until this week is along an old railway embankment. It is flat and reasonably straight, through pretty woodland. A lovely place to run, however it is only 3.5 k (just over 2 miles) – so not far enough for the final stages of the programme. I took some time last weekend to scope out a new route. My dog and I spent a very pleasant afternoon wandering over the fields and lanes to map out a 5k circuit. I was very excited to get started!

The new route is across much more open terrain, so a little more exposed to the elements. I’ve only had to contend with blazing sunshine so far, which has made the experience hot and sticky! There is also a significant incline about half way around, which seemed a good deal steeper when running than it had appeared whilst walking. In addition, I have to negotiate several gates and styles – but hey, they give me a breather, right?!

I have managed the circuit twice now. Both times I have run 3 k (2miles) in the 25 minutes. So my baseline is 12 minutes a mile. Slow I fear, but I have to start somewhere and the only way is up from here – literally as I’m running uphill…

Today I will attempt my second run of Week 7. My husband is going to run with me so I won’t be tempted to stop. My mantra is “keep moving” – no matter how slowly.

I’d love to hear from other runners and learn from your experience. The questions I’ve got at the moment are – What is a comfortable pace for you? How far do you run, and how often? How long did it take you to feel comfortable running your favourite distance? However, any thoughts, advice and encouragement you have will be gratefully received. 

Learning to be vegan…

I am learning to be vegan…

Not content with learning to run I have also decided to change my diet. There are many reasons why people choose a vegan diet including ethical, environmental and health considerations. My health is the main driver for me trying a vegan diet, but the ethical and environmental concerns are also driving this change. I know that eating mustard makes me very ill, but there seems to be other things that I eat that upset my body – causing pain and fatigue. I have given up meat, chocolate and wheat at various times in the past, and felt better for it, but I have never stopped eating eggs and dairy before. I have been contemplating a vegan diet for a while but it took my husband to set us on the path to change! His interest means that we can become a vegan household and I’m not having to do it alone.

A friend had recommended Deliciously Ella – a blog and cookbook written by Ella Woodward– a few months ago. Ella has PoTS (postural orthostatic tachycardia syndrome) and has used food and diet to help her control her symptoms. It has been a great place to get inspiration, and recipes.

The meal I have found the most challenging to make vegan is breakfast. I was addicted to Greek yoghurt and homemade granola. Until a fortnight ago I’d eaten almost it every day for the past two years. I thought that porridge may be a good alternative but I don’t enjoy the texture, so I’ve been experimenting with making a yoghurt substitute and this morning’s breakfast worked quite well.

I soaked a third of a cup of porridge oats and 4 brazil nuts in water overnight. This morning I discarded the water, then whizzed the oats and nuts together in a blender along with a tablespoon of coconut cream and a couple of peaches to make a thick smoothie – the consistency of yoghurt. It wasn’t a great colour but with a portion of granola and a handful of blueberries on top it made a tasty breakfast.

I think that I will try a blend of oats, brazil nuts and coconut cream tomorrow, and put the fruit on top. It might look more appetising! I’ll let you know how I get on.

Lost in the fog

 Not until we are lost do we begin to find ourselves. 

I’m a tad lost in the fog at the moment! Fibro fog that is.

One of my very best friends has a fabulous saying which sums up how I feel perfectly – “my head’s in a shed”. I have manged to miss three important occasions in recent weeks because I have entered into the wrong date on the calendar on my phone. It makes me look, and feel, very silly!

There is a wonderful resource, which I found in the waiting room while waiting for a physiotherapy appointment at the hospital, called The Pain Toolkit. I found it in booklet form but there is also a great website. It is a very practical guide to the self-management of pain, developed by Pete Moore, who himself suffers from persistent pain. You can read more about Pete and the development of the toolkit here.

There are 12 “tools” in the Pain Toolkit. The first one is being “Accept you have persistent pain…and then begin to move on.” It is, arguably, the most important and, in my experience, the hardest tool to implement!

I have changed the wording to fit my personal circumstances. For me it says – Accept you have JHMS and Fibromyalgia…and move on.

Or – Accept you have persistent pain, fatigue, digestive issues, foggy thinking…and move on.

The crucial word here is Accept. The difficult word here, for me, is Accept. There are lots of graphics and articles on the internet, in fact one popped up on my Facebook timeline just the other day, titled “Things Not to Say to Someone Who Has a Chronic Illness”.

Things like
· Snap out of it!
· It’s all in your head.
· It could be worse, at least you don’t have cancer.
· That’s not a real illness.
· Just think positive.
· Have you tried changing your diet?
· It will get better, just be patient.
· You need to exercise more.
· You take too many medications

As I read the graphic I realised that although I would never dream of saying these things to other people I say them to myself – regularly!

It is so easy to believe on the days when I am feeling well that I don’t have JHMS or Fibro. I can go several days or even weeks living in a bubble of denial and delusion which means when a flare occurs it’s crushing.

A metaphor I like to use to describe my situation is this. Imagine a deep dark well, the walls of which are dotted with footholds, to allow access, and scattered around the well, at differing depths, are some ledges. Two years ago I was at the bottom of the well, not coping with the pain and stress. In fact I was digging and making the well deeper! Over the past two years, with help from healthcare professionals and my family, I have managed to stop digging and climb to the top of the well. I have even been able to live for significant periods of time out in the sunlight. During these times I begin to forget about the existence of the well until one day I trip over the edge and fall back in. If I am lucky I don’t fall too far before I land on a ledge where I can sit for a while to get my bearings and start the process of climbing back out. Maybe, just maybe if I keep in mind that the well is always there I might avoid falling down it?

Time to Reflect…

“Look after the senses and the sounds will look after themselves” from Alice’s Adventures in Wonderland by Lewis Carroll.

I’m struggling a bit at the moment if I’m really honest.
My pain and fatigue levels have gradually increased as the days have got shorter and the weather has become colder and wetter. I am finding it difficult to get out of bed each morning and to get going each day so I don’t feel that I’m making the most of my day.

It is time to take stock. When I’m feeling well I find it very easy to believe that the fibro has disappeared and the HMS doesn’t affect me so I don’t need to employ the self-care strategies that have helped me to feel so well.

So I am revisiting the notes I made at my Clinical Psychologist appointments, starting with the first appointment.

My first visit to the psychologist, Emma, was a revelation. I had waited 9 months to see her, but it was well worth the wait. She listened with compassion and concern. She had heard similar stories before, many times, and I didn’t have to defend myself, I just explained.

Long story short we discussed what I did, on a daily basis, to deal with my pain and symptoms. We discussed how I felt about the pain and what I found worked to help relieve symptoms. No judgement.

I came out of the appointment feeling happier than I had felt in months (if not years) and with some homework to complete before my next appointment.

My homework was to accept that I suffer from HMS and fibromyalgia so treat myself with compassion (!) and to pace my activities (?!!). Emma explained that I had to imagine that my energy was stored in tank, a bit like a petrol tank of a car. Resting and being kind to myself add energy to the tank, being active would (obviously!) use energy. I was to try and keep my fuel tank over half full.

So rest was to be my new best friend! Having spent most of my life ignoring what my energy levels were telling me and using rest as a reward for finishing a task, or list of tasks, so keeping my tank near the empty mark this was going to take quite a mind shift to achieve.

I plotted my energy levels throughout each day for a week on a grid, recording my level as a score out of ten with ten being full of energy and 1 being no energy. At the end of the week I could see a pattern emerge. That pattern is still the same today. Low energy in the morning, dipping during the middle of the day and rising to the highest point towards the end of the afternoon. The pattern hasn’t changed, just at the moment the scores don’t rise much above 5! Low energy understandably means high fatigue levels, and at the moment also coincides with higher pain levels.

So my challenge this week is to accept that my pain and fatigue levels are high and to treat myself with compassion. Also to pace my activities. It is easy to try and cram too many tasks into a day and not to leave rest times in between. I know the times of day that my energy levels are likely to rise so, in theory, I can plan appropriate tasks for those times. In theory!!