A Spoonie Full Of Sugar…

As I mentioned in my recent post on self harm, I have been quite aware lately that I am not always making the healthiest choices for myself, and in particularly I have been thinking a lot about my weight.

Since I first developed symptoms of CFS I have been on a steady path of gaining weight. This is due to two factors:

1. I can no longer exercise in the way I was used to. I had actually been building up my running distance when I first became unwell, and mentally I’ve struggled to accept that I need to adapt how I exercise since then.

2. I worry that if I deny myself food I won’t have the fuel I need to create the limited energy that I have each day. Sugary food is an instant fuel and in a very short term way gives me a boost. It’s easy to fall into a trap of relying on those quick fixes!

Ok since I’m being honest, also a third:

3. I feel crap enough a lot of the time without adding feeling hungry (and grumpy)

When you aren’t feeling your best it is easy to become self indulgent to comfort yourself, and since 2015 I have been doing a lot of that. I’ve had a few periods of healthy eating, because I have studied all the reasons that I should be eating better, but I haven’t been keeping anything up longer than a few months.

I’ve decided though that I have reached a point where I need to get tough with myself. I have reached a weight where I feel physically uncomfortable at times, and so now is the time to put my chubby foot down and practice what I preach to others.

So I’m going to follow some advice I got from a podcast I mentioned in a previous post (It’s not just you):

Make it easier to succeed than fail

What I mean by this is that when trying to get into a new habit do a bit of prep work to enable success. For eating better there is a fairly obvious first step – get rid of all the crap you shouldn’t be eating! A lot of negative eating can come from boredom, or things being there when you are hungry (which is why it’s always best to do the food shop after a meal!), so make it harder to get your fix and a lot of the time you’ll find you can’t be bothered to go out of your way to get it.

This step can also mean getting in the right sorts of food. I am a very fussy vegetarian, so a lot of high protein or low carb meals involve foods I am not a fan of.

But you don’t have to suddenly be perfect, just don’t be so bad!

So I have decided to focus on portion sizing of meals rather than cutting out the carb elements. I know that if I don’t respond well to forcing myself to eat veggie-packed, brown rice, tofu meals.

Learn from past mistakes!

My cupboard is full of half eaten packets of healthier options from previous failed attempts to eat better. So this time I’m not going to try going from 0 to 100 straight away. I’m just going to start with:

Emptying the house of snacks
Deleting my fast food ordering apps
Making meals a little smaller

Taking smaller steps and just focusing on taking them one at a time makes the task less daunting.

Ok so we have a rough plan, let’s check in with my 5 tips to starting a new habit from the Habits post:

1. Time of day

Ok, so when am I most vulnerable to temptation? After dinner is definitely a snacky time for me so I will need to be prepared to distract myself. Keeping busy prevents boredom eating!

2. Involve others

I have already started this step actually, at the moment I am having dinner with my in laws and sister in law on weekdays. My sister in law is a bastion of self control and helped me to start sketching out in my head how to approach my weight loss. She is also going to keep asking me if I have been good. Being held accountable by someone else is a great way to help add to your will power (especially if like me you don’t have any!).

3. Phrasing

“I am going to lose weight” a good positive start, but even better to use something present tense “I am eating less”. Stating it as a fact, as a fait accompli, to believe it to be true and so to act as though it is.

4. Write it down

By posting this to you all I am sort of adding 2 and 4 together. I have stated my weight loss manifesto and so it must be stuck to!

However I am going to double up on number 4 a bit. In Your Way To Health, the health journal I co-created, we have a section on the daily page for logging food and water:

I am going to use this tool so that I can try and spot anything that is helping or hindering my progress (e.g. maybe a smaller breakfast will make me splurge on lunch, or maybe it will set me up on the right foot for the day!)

5. Managing setbacks

I promise, here are the start, not to beat myself up if I have bad days. As long as I am eating less crap some of the time I will be doing a lot better than I am now, and that is all I am asking of myself. To do a little better. Because once I am doing that I can start to do a little more, and a little more, until I am one day miles from where I am now.

Make your senses happy

There are certain things that I always find comforting regardless of my mental state. They might conjure memories or just be inexplicably reassuring.

When having a panic attack they suggest focusing on one thing for each sense to bring you back. One thing you see, one you hear, one you smell, one you feel and one you taste.

Can the same use of senses lift us up when we are depressed?

Touch

For as long as even my parents can remember I have had a strong attachment to satin ribbons, the softer and silkier the better. Rubbing satin is very calming to me and as I child I collected anything I found that had that satin texture. I would suck my thumb and rub the “silky” to feel calm. I’ve long given up the thumb sucking, but even now I keep a few of the softest ribbons I collected in a draw. Just rubbing one between my thumb and forefinger gives me a feeling of peace.

Sound

The opening song to the little known film Cats Don’t Dance (it’s really hard to find but so worth seeing) is my go to “cheer up” sound. It’s an upbeat song and singing along to it always gives me a feeling that I can take on the world

Smell

This one was harder to think of, but the smell that comes to mind when I think of a happy feeling is hay. Specifically the warm hay smell of a guinea pig. We had many guinea pigs growing up, and although I was never as attached to them as some of our other pets, their warm hay smell is very comforting. Walking around a pet store, I always take a deep breath when I get to the rabbit/guinea pig area. That mix of hay, sawdust and animal just smells like happiness some how.

Sight

I’m doing these easiest to hardest and it’s a toss up between the final two. My initial answer was Bill Wurtz history of the entire world, I guess. A YouTube video that I have watched countless times to distract me, but I think that’s more the sing song nature of it (especially as I’m singing “the Cambrian explosion” to myself as I type) so I’m not going to count it as sight.

Instead I’m going to say two screen shots I’ve saved on my phone. I’ve had them years so I don’t know where they originate (sorry to original posters for not giving credit). They both cheer me up in different ways. The first gives me a feeling of inner strength, and the second just makes me smile.

I highly recommend saving little things like these on your phone for when you need a little pick me up.

Taste

I have an unhealthy relationship with food so this takes the cake (sorry couldn’t resist) for being the toughest to think of. What food would I always be happy to eat? I love chocolate, but it doesn’t make me happy per se.

I actually took a few days to think about it and the constant in my life, the thing that can make me eat things I hate – is ketchup. Good old tomato sauce. So although a little bit of it won’t relax me, it does give me the power to do things I can’t otherwise. That knowledge makes me happy in a different way to the others, but it is happiness.

What makes your senses happy?

It’s actually been interesting to compare how I feel with others. I asked my husband about his 5 choices and he had different ways of thinking. His touch was a good hug, and his sound was my laugh. I realised that I hadn’t included people anywhere in mine!

So what are your 5 choices? Can you use them to lift you up when you are down?

Announcing ‘Your Way To Health’

So as I hinted last week I have something special to announce. I have co-authored a health and wellbeing journal which will be released in October! I am very excited to share it with you all once the final touches are done!

I made a very rough version of this journal for myself when I was first signed off with CFS. I was seeing many different health professionals and they all encouraged me to track different things. I was also being trialled on various pain medications (ultimately none worked) and I wanted to judge if they actually had any effect. I am not the best at sticking to things, and have never managed to keep up a diary for more than a few days, so to help me I made a template to fill out each day.

Months later I was working with Kuljit Sehmi (www.centrebalance.co.uk), who specialises in ME and Fibromyalgia, and I was feeling much healthier. I showed her what I made for myself and she was full of ideas of how to add to it.

So we did!

We’ve had great fun working together, and the rough pages have developed into a 3 month journal. Complete with monthly health focuses, weekly reviews and a few creative pages (containing my groan worthy jokes – I’m sorry in advance!). We are launching it officially in October once it comes back from the printers, and will be selling on Amazon, at trade fairs and anywhere we can really!

My dream is to work with practitioners and specialists to create custom journals for their clients, and maybe one day even an app! I never thought I had the skills or the knowledge to embark on such a huge undertaking, but I’ve loved every moment so far.

Changing your dreams

Imagine you’ve made a gradual change. You’ve lost weight. You don’t notice a big difference because you see yourself every day, then you bump into someone you haven’t seen in 6 months. They are shocked at the change in you – “you look so different!” “Wow you look great!”. Suddenly you see yourself from their perspective, “I guess I have changed lots!”

We don’t think about how we change inside in the same way, but it really is very similar. We gradually change day by day without really noticing.

When we spend our lives working towards goals or often just doing the day to day to survive, we don’t stop to reflect very often. So do we still want what we are working towards? Are our goals the same as they were before?

It can feel daunting to realise that what used to be important no longer is, especially when you’ve worked hard for something. But your priority should be what will make you happy, not a feeling of obligation to your past ambitions or finishing what you started.

What was your dream job when you started, might not give you the same fulfilment now. Your experiences shape and change you, you are forever growing. Embrace your future self instead of clinging to the past.

It’s a scary, but exciting thing to discover you’ve changed, you’ll find potential you never thought possible. Where will your next adventure be?

This might seem a bit abstract and cryptic compared to my other posts, but it’s something I’ve been thinking about lots lately. I’ll reveal more in next week’s post!

Effective resting

When I first had my big energy crash in 2016, I spent a lot of time on the sofa bingeing Netflix. I didn’t have the energy to do active things, and I didn’t have the concentration to read. Watching trash on TV while wrapped in blankets felt like I was resting, but I soon learnt this wasn’t the case.

Once you have no energy you really notice how many things use it up! That means to rest you really need to take out all the activities that sap your energy. For example, you don’t have to be running around to get tired, thinking or concentrating can be just as tiring.

So when you are feeling tired, don’t just flop on the sofa, make the most of your down time by laying back and doing mindfulness or breathing exercises. There are plenty of apps around to help you out. You want to limit how much your senses are working in order to give your brain time to rest.

Reduce stimulation as much as possible – but don’t nap if you can help it! Sleeping in the day can get you into negative routines, the idea rest is to relax for 10min and just exist. Some people might find some relaxing music helps, but personally I enjoy some peace and quiet.

It’s an individual experience, so everyone will have different tips and tricks, but remember if you are thinking you aren’t resting, and no matter how crap the Netflix show is, you’ll always be thinking something about it!

A very spoonie holiday

I’ve talked in my last two posts about my recent setbacks, but I’ve yet to address why I’ve been struggling a bit more. As someone with CFS routine is hugely important to me, it helps me pace and keep my activities at an even level. Breaking that routine can cause me a lot of chaos.

At the start of August I went on holiday, the week before I hit a new personal best for time in the office and felt like the week away was much deserved. What I underestimated was how hard going abroad for a week would be. Not just the travel, but the holiday itself. So I’m going to try and think about the individual issues and how my future self could mitigate at least some of the struggles.

Travel

The first and most obvious hurdle was getting to the Italian villa where our family was staying. This meant a 4am start to get to the airport, although evidently not early enough as it ended up being a bit of a rush once we got there. I like to be early for any travel, flights especially. Feeling rushed was a major trigger and before we even got to the plane I was experiencing pain and fatigue from the stress. I couldn’t even have a much needed plane nap as the pain kept me uncomfortable and awake. Once we got to Italy the weather was hot and dry, luckily that wasn’t super different to the hot and humid weather back home, as drastic temperature changes always mess with me. We picked up the hire car and I made sure I wasn’t involved in navigating so I could relax in the back. The rest of the journey was uneventful, but it was a long day.

For the return journey I used the lessons I’d learnt and insisted we leave with plenty of time to get to the airport early. We got a bit lost, so I was especially glad of the extra time! I was still unnecessarily anxious to get through security and sat by the gate, but once there I could alternate between resting and stretching my legs, so once we were on the plane I was relaxed enough to nap. It was still a long day, but I noticed a huge difference in how I felt at the end of it.

So tips?

Give yourself plenty of time to do things at your pace
Let others be in charge of any extra thinking if you can
Accept that it will be a big day and prepare for that

On Holiday

My favourite holiday pastime has always been swimming. Now that I have CFS my fitness level is much lower, and even a small amount of swimming can tire me out. So I experimented with swimming over the first two days and found that actually it isn’t so much the swimming I enjoy, but the experience of being in the water. This made things much easier as I could spend my time floating or sitting on the steps into the pool. I got to have my relaxing pool time without exhausting myself.

Day trips are always going to be a tough one for me, so I only joined the family on one during the week. I warned them in advance that if they wanted me to come along we wouldn’t be out for so long as I’d get tired. They agreed and planned that we could walk through the town we were visiting, and there was a car park at both ends, so they could fetch the car and pick me up from the one we finished at. The reality was that it was a very hilly town, we walked downhill and there was no way I’d make it back up – so the car park plan was handy. That said in the actual moment, they were reluctant to leave so soon, and realised all the restaurants were back at the top of the hill. I felt pressured to not ruin their day and attempt to climb back up the hill. Luckily my husband is very supportive and put his foot down, stopping me from pandering to the group. In the end they left us at a cafe by the car park for an hour whilst they did extra bits and we stopped for lunch on the drive back. Everyone got what they wanted from the day, and I didn’t have to do more than I could manage.

Tips?

Find low impact ways to enjoy your holiday activities
Discuss plans in advance of day trips to manage expectations
Don’t put others’ enjoyment before your health
Be ready to sit in cafes and rest (bring a book or have a buddy to chat to)

The Aftermath

The hardest part of the holiday wasn’t until we returned. Routine is a key part of my energy management and I’d been out of it for 8 days. When I tried to go back to my routine on Monday I found it very tough, I couldn’t make it the whole way to the office. By Wednesday I’d had enough and despite bad leg pain warning me I needed rest, I forced myself into work. Within minutes I was overwhelmed and had to leave. That foolishness caused me to have a bad flare up and not be in work for another week and half!

My biggest tip!

Accept that the holiday will break your routine and it will take you a while to get back into things. Don’t push yourself as that will not help! Take it at your body’s pace and be patient!

Positivity and Recovery

Last week I faced my fears and did a bit of public speaking. I did an hours session for 15 people from work about the importance of positivity. I was shocked by how much they all appreciated it.

I was raised a pessimist the way other people are raised as Christian, Hindu or Muslim. My mother’s mantra was always to expect the worst and be pleasantly surprised. However when I got ill, this outlook really held me back from recovery. I was frustrated and angry at my body for not working, and the distance between where I was and my goals seemed insurmountable and getting no closer each month.

It was once I started having talking therapies that I realised how much I was holding myself back. If I looked back at where I’d been a month ago instead of forwards to a distant goal, I could see a lot of progress. If I gave my body love and appreciation instead of hostility and anger my recovery was more noticeable.

So the tips I taught my colleagues were this:

Create positivity around you

By making an effort to be kind and polite to those around you, it makes it a nicer environment. That will lift you up. If you continue a cycle of negativity with a difficult person, you are really just dragging yourself down. Choose to be the kind of person you want to be around. Emulate the behaviours of people who make you feel happy.

Challenge your negative thoughts

We all are prone to assuming the worst, to worrying people think negatively about us, or to dreading an upcoming task. Particularly the thoughts about other’s disliking or judging us are easy to counter. We are all the centre of our own universe, and unless we are interacting with someone, we probably aren’t thinking about them. So if you trip over in public, or embarrass yourself in some way, remember that was a minute part of everyone else’s day even though it was massive to you!

When looking at an upcoming task you are worried about, think about how much you will learn from doing it, how much skill you are showing off, or how much the people you are doing it for appreciate it. Don’t put it off, you’ll only be fretting about it until it’s over, so embrace the challenge and dive in!

Be kind to yourself

When you are feeling down, imagine that all the negative thoughts are being said by someone you love. If they said those things about themselves you would comfort them, tell them how untrue those things are, how amazing they are. Don’t treat yourself any differently! You deserve all the kindness you give your loved ones. You deserve that love too. So be compassionate to yourself when you are feeling vulnerable.

Be grateful

Gratitude is a powerful tool, I could probably do a separate blog on it. The basic principle is this, don’t focus on the things that are making you unhappy. Before bed, or first thing when you wake up take a moment to think about the things in life you are grateful for, the things you are lucky to have. Many people don’t have the luxuries you do, so appreciate them instead of taking them for granted. By focusing on those amazing things or people you have in your life, you will give yourself a little positive boost to start or end your day with. It’s a simple trick to reverse your negative focus.

Overall wellbeing

It’s very easy to blame a particular thing for our unhappiness or our ill health. If it wasn’t for that one thing we would be happy, successful and healthy. Fixating on one area gives us a focal point, but it also gives us an excuse. I can’t fix that one thing, then it’s not our fault. But really, if we are being honest with ourselves, our health and happiness is so much more complex.

Years ago I attended a great talk from someone at People’s Health Trust, he said that health is being physically, mentally and socially well. It’s not even a new concept, it was the World Health Organisation definition of health back at the turn of the 20th century! We often think of health as a narrow and negative field, where we are just trying to get by. However considering it as lots of little things and that good health means all areas are 100%, can give us a higher aim. We aren’t just trying to be well enough to function, we are trying to be healthy and happy in all areas of life.

This broad view is the opposite of our focused blame. It can seem overwhelming at first, but really it’s breaking a big concept down into lots of smaller parts. Don’t let the number of areas scare you, because each one is little and easy to impact!

The way I like to think of this is as though we are a character in the Sims. Each Sim has an overall mood bar, but there is a sub menu of other bars, 6 total covering basic needs. However they now also have extra mood modifiers based on experiences, environment and fulfilment of ambitions. This makes mood much more complex.

You’d imagine a happy Sim would have their basic needs mostly met, but if a Sim has bonuses (e.g. for having fun, donating to charity, being in a nice house, making a nice meal) they can be happy even with a two bad bars!

Likewise, having all your bars being full doesn’t get you into the top level of happiness, the Sim needs some positive bonuses as well as their basic needs being met. In fact they can be almost perfectly happy without their bars being maxed out!

As you see the bars are green in these scenarios, but the bonuses make all the difference!

So try to imagine your wellbeing as like a the Sims overall mood bar. Fulfilling your basic needs will get you so far, but it’s the extra little things that will build you up. Just because you can’t improve one bar doesn’t mean you can’t be happy and fulfilled, you just need to find your bonuses! The little things that make a difference to your day.

Habits

They say it takes about a month of doing something every day to form a habit, however breaking that habit is often a much quicker process. Healthy habits build us up, bad habits hold us back. So what can we do to set ourselves up for success?

Teaching yourself to do something is a personal experience as everyone has a different learning style. You need to consider what you are trying to introduce into your routine and plan at the start how best to do it.

As I said everyone is different, but here are some tips that worked for me:

Time of day – for me I find the morning is the best time to add a new habit, as often I get swept up in the day and forget to do things. For you first thing might not be best, but it can be a good idea to add your new activity at the beginning of a section of your day e.g. when you get home from work. If you say ‘I have to do this before I do the rest of my routine’, you don’t fall into the trap of procrastination and put it off over and over. No matter when works best for you, try to keep the time fairly consistent as that helps to build the habit into your day.
Involve others – if possible (depending on what habit you are working on) including someone else in your efforts can give you added motivation. For example when I wanted to start going for a walk every day, I asked my husband to join me, that made it a bit more fun and also gave me someone to push me into doing it when I didn’t feel like it.
Phrasing – another way to involve others is to talk about your new habit, but to make it an effective reinforcement you should think about your habit like a done deal. “I do this now”, rather than “I’m trying to do this”. By framing your thoughts as though it’s a done deal, you make it a certainty rather than something you might not do. It also means if you don’t do it people may mention it to you – “don’t you normally take a break now?”, to give you an added nudge!
Write it down – something about putting things in writing makes them seem much more official. That can give you a positive boost towards starting this habit. You can also utilise technology to turn writing it down into a helpful reminder. At work, to encourage myself to take regular breaks I have a diary reminder (in bright red!) that pops up at the same time each day to encourage me to have some rest. I don’t have it as a recurring reminder, at the start of the week I add it in for each day, this reaffirms what I want to achieve ahead of time.
Managing setbacks – the hardest part of habit forming is when you miss a day. It is very easy to think you’ve ruined your hard work and broken the habit. That negative outlook makes it really hard to pick up and carry on the next day, it’s easier to think you’ve failed and it’s over. However it’s just one day, even if you fail on day two, 50% of the time you succeeded! Any further in and the majority of the time you did great! Don’t make setbacks into a big deal or they’ll become a big deal. The only reason to think about your setback is to see if you can learn from it, is there something that you can do to avoid that happening again? Positive thinking can make all the difference!

Taking Step One

When I’m having a bad day and my energy levels are low it often feels impossible to even think about being productive. Any task can feel huge when you look at it in that mood.

One of the best tips I’ve been given during the various therapies I’ve had during my recovery: Just plan to do 5 minutes of an activity.

If tidying up the living room seems like an insurmountable task, I tell myself “well I’ll do a tiny bit”, and once I’ve done that initial effort it’s only a short step to “well I’m here now, might as well do a little more ..” and before I know it the coffee table is clear and the pillows on the sofa are neatly placed.

If you imagine a car, when you start the engine it’s a lot of effort and noise from the car, then it settles into a steady purr. Your body is quite similar, getting started takes a spike of energy and once you are going it’s a lot less energy to maintain.

Worst case scenario, you’ve done 5 minutes of effort and can’t do more. Oh well that’s more than you thought you could do!

Often I wake up feeling like there’s no way I can make it to work. So I say “well let’s just do as far as we can body”, and I get dressed – still ok? – do more of my morning routine – don’t feel awful? – slow walk to the station etc etc. Even if I don’t make it the whole way into the office, or if I do but can’t stay long, it’s more than I thought I could do. I’ve exceeded my expectations and that feeling outweighs any bad feelings about not managing 100% of my goals.

One caution though – when suffering with fatigue beware momentum! I know I’m incredibly guilty of getting caught up in what I’m doing and overexerting myself without noticing. So always make sure to pause and check in with yourself at regular intervals to make sure you’re doing okay!