Ostheopathy and Chronic Fatigue

I have given you an account of my adventures into acupuncture, and now I have taken a leap into another homeopathic discipline.

I was raised a true ‘science person’ and so anything that isn’t traditional medicine I am naturally suspicious of. However I have spoken to many people who have had good experiences with chiropractors, and so I started looking into it. I found osteopathy to be more appealing than my original topic of chiropractors, as it seems a bit more all round and used lots of science words.

My first visit was very similar to my first acupuncture session, we spent the entire time combing through my entire life and medical history. What was my childhood like? What was I experiencing emotionally at the moment? How about physically? The big difference came in how much of a two way process this was. My osteopath, Josh, would often pause and lean back, before repeating back something I said, suddenly bringing my attention to a flaw in my thinking. Josh is very good at this, he can say something very simple and suddenly I’m thinking “really? Is that how I said that? I am looking at that so wrong!”.

For example the biggest revelation of my first session was that I was referring to my body as “it” not “me”. I had a huge disconnect between brain and body. I saw myself as my brain inhabiting a body that wasn’t doing what I wanted. Seeing that made me start to look at things in a different light, I’ve always considered managing my CFS as working in partnership with my body, so what does this mean for that?

Josh explained it as: your body senses things and then the signals are passed to your brain, so your body is always a step ahead of your mind. This means I’m now working on trusting my body and it’s reactions instead of analysing everything endlessly. I’m a bit tired? Rest. It feels good to stretch a muscle? Do it!

I know it’s sounding a bit like therapy from how I’ve described it so far, and sometimes it feels a lot like it too. The key difference is that we focus on the physical a lot of the time, although sometimes that leads us in to bottled up emotions as they cause a lot of tension in the body!

My main take away so far that I’d like to share is that with CFS we often take pain or fatigue as a sign to completely stop, but it is worth taking the time to play around with whatever you are doing. If you are standing and you get tired is there another way to stand (maybe introducing some leaning?) that could alleviate some of that? When sitting, is there an adjustment to posture that changes your aches and pains?

Josh calls this “being creative with movement” and I’ve found particularly with activities that involve a lot of standing, I am able to prolong my endurance and reduce symptoms the next day by making sure I move about a bit rather than standing totally still. It seems counterintuitive as I’ve always though more movement = more energy used = more symptoms, but actually mixing things up makes a big difference.

So would I recommend osteopathy to others with chronic conditions? Yes, it seems to help connect the dots of what you are experiencing emotionally and physically to find ways to improve symptoms. I wouldn’t expect drastic results, but new coping mechanisms are always welcome!

Side Effects – Do I want to know?

Magicians who work with hypnosis and suggestion will often say that some people are more susceptible than others. The same is true of the placebo effect and it’s antonym – the nocebo effect.

I first heard of nocebo through a youtube video, it started out by pretending to be about frequencies of noise, and stated that it would play a sound that was beyond human hearing but caused ear pain and headaches. As soon as the sound was played I covered my ears, such pain! My husband looked at me like I was mad. He felt nothing. He was incredibly smug moments later when the video announced there had been no sound. I was shocked, but I had felt it! How could I have had pain in my ears at that exact moment if there was no secret pain sound? The answer was simple, nocebo. The idea that by telling someone “this will hurt you” it will hurt them.

I was not surprised that I was susceptible to the nocebo and my husband was not. I am quite a gullible person generally whereas he is always the sceptic. When I’ve walked into work and someone has asked “Are you okay? You look a bit ill” I will quickly think “actually I don’t feel that good”, whereas moments before I would have said I was fine. My husband however is ever the contrarian, “you’ll like this film” almost always ends up with “this is rubbish”.

So armed with this new knowledge that I am susceptible to negative as well as positive suggestions I have taken to avoiding things that will negatively bias me. A major one is that I do not read the side effects leaflets when I get a new medication. How will I know if I am really having a side effect or just experiencing a nocebo? There is no way to know, so by avoiding reading about them I guarantee that anything I feel is real. It’s a weird feeling questioning your own reality and I try to avoid it wherever possible.

Recently though I had a genuine side effect. I have recently made a change from citalopram, my antidepressant since 2016, to mirtazapine as after 3 years I wasn’t getting much of an effect anymore so I made the long and stressful change over. This transition meant weaning off of one and onto the other across a couple of months. After a week of the full dose of mirtazapine I started having an insatiable hunger. This was around the time I posted about trying to lose weight, so at first I thought my cravings were a reaction to trying to eat less. However no matter how much I ate I was still ravenous. One day I literally ate until I was sick. It was awful!

When I went to the doctors for my fortnightly check in I mentioned that I was having issues with eating as I was worried I had developed an eating disorder (I have previously had issues with food as a teenager). The doctor was surprised and we talked about possible causes and then suddenly she said “AH HA! It’s the new drugs!”, it turns out the group of drugs that mirtazapine belongs to are known for causing ravenous hunger, particularly cravings for carbs (something I did not need help with as I am already a pasta addict).

This caused me to reflect, when I had approached the doctor about changing antidepressants, we had selected mirtazapine as it helps with sleep, and I had been having bouts of insomnia. Would I have gone with it if I had known this side effect though? Probably not. So should I have done more research into the options available and what potential pitfalls I might experience? I don’t know is the honest answer. As someone who is highly suggestable reading all the side effects would have meant I was looking out for them and potentially willing them into existence. However the trade off is I am now having to work around a very unhelpful side effect because I wasn’t educated in the risks.

Is ignorance bliss? Or does being armed with the facts alway help, even if, like me, you might end up experiencing a nocebo effect?

Acupuncture and CFS

As the child of science teacher and an engineer I am a big sceptic about homeopathy. I am of the opinion that if something works it becomes medicine, so alternative medicine must not work. However when struggling with a chronic health condition you try anything.

My encounter with acupuncture was before I was actually diagnosed with CFS, when I was stuck in the horrible limbo of feeling awful and not knowing why. My CFS initially presented as chest pain and a fatigue I put down to struggling to breath comfortably. I was desperately trying to continue my normal day to day life but my body had other ideas!

That was when someone at work who I respected and thought of as a very logical person suggested acupuncture. Immediately I was incredulous, how could someone I thought of as very smart be suggesting such a silly thing? A week later I booked an appointment. Funny how desperation overrides being stubborn!

The first session we spent 90% of the time going over why whole life, every illness, every trauma. The practitioner was very nice, she seemed to know what to ask, and was very interested in the whooping cough I’d suffered from as a child as she felt my current pain was linked back to previous experiences and traumas.

Then came the part I was dreading, I had to undress and lay on the table ready for the needles. I have had a phobia of needles since I was a child so it had taken a lot of courage to try acupuncture (okay more desperation than courage but whatever gets you through!). I braced myself for each tiny sting as she put needles into my wrists and ankles. Inwardly I rolled my eyes, my chest hurts so you are stabbing my feet and hands? after about 6-8 needles were in place she stopped. Is that it? I’d assumed I’d be a full hedgehog.

She moved next to me and placed her hand on my sternum. Now at this point in my CFS I could not stand any pressure on my bestbone, even the tension of breathing hurt it. The doctors had been considering costochondritis, an inflammation of the connecting tissue either side of the sternum, as the potential diagnosis (later disproved by an ultrasound that showed no swelling). So when she pushed down I braced myself and tried not to whimper… but it didn’t hurt. I was in shock.

“That didn’t hurt!”

“Yes” She nodded, this is what she had expected.

“No, it really didn’t hurt!”

I have inadvertently let my shock show, revealing that I thought this was bollocks up until a moment ago. She looks mildly annoyed by hides it well.

“It actually doesn’t hurt!” I double down on insulting her profession with my shock. Usually I am much more tactful, but it’s like I’ve just seen a magician turn a skyscraper into a rabbit. How can pins in my wrists and ankles stop my chest hurting? It is so bizarre and illogical I cannot compute it, but it works. Undeniably it works.

Further research has shown that scientists agree with me, they don’t really understand why acupuncture is effective at pain relief, but it is. I’m sure all the practitioners out there would explain it’s to do with energy flow and blah blah, but my understanding of the nervous system and my experience having acupuncture just don’t line up. Does it matter? Not really, if something works for you that’s the important part, the why is just for interest.

I continued having acupuncture once a week for a few months, and found that it would relieve my pain for a few days at a time. Not a permanent solution and in the end too costly to keep up, but I will never get over the feeling of wonder I had that first session when it worked.

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.

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.

A bad week

You won’t be getting a full post this week, my catch up with scheduling posts coincided with a bad week.

However despite my focus on positivity and recovery I’m not going to shy away from owning up to the tough times, the times I don’t succeed. Because we all have them, and it is nothing to be ashamed of.

This week I’ve cried hysterically at work, at home while brushing my teeth, and at the doctors during two useless visits. I’ve had shooting pains, joint pains, migraines and just generally felt really rubbish.

The road to recovery is not smooth, there are potholes and wrong turns.

But I know not to let this week define me. One bad week doesn’t mean I should give up. Next week will surely be better, and the fact this was only a week rather than a month means I am miles ahead of where I was a year ago.

It’s okay to not be okay sometimes, it’s okay to find it all a bit much. Just don’t let that drown out all the good you’ve accomplished.

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.

It’s not just you

Recently mental health has had a lot of attention and it’s become much more acceptable to talk about the issues we all face.

Finding out it’s not just you can be one of the most reassuring experiences on the road to recovery. Whether that’s learning your diagnosis so you know you aren’t imagining it, or talking to someone with a similar experience, knowing that you aren’t the only one in the world with these issues can mean a lot.

When you are experiencing anxiety or depression it can feel incredibly isolating. You are trying to fight against it to keep functioning, but it can be like quicksand, the more you struggle the quicker you sink.

By talking to others with similar experiences you get the reassurance that there is hope, and it’s a great way to find out tips and tricks that others have found to pull themselves out of the mire.

To do that though we have to be brave and take the first step. Admitting to ourselves that we are not okay. That’s often against everything we’ve learnt, but it isn’t weakness to ask for help. Talking about my experiences openly I’ve often had people say they admire that I can do so. The majority of people will respect you for facing your demons, it’s something they probably struggle with themselves.

So start those conversations. Even if to begin with it’s with strangers online anonymously. Find a community that has shared experiences and support each other to get better. We are stronger together!

If you aren’t ready to talk about your issues, start listening. I’ve recently been enjoying why am i sad? – a podcast where four people talk about their issues and each fortnight set a goal to try. They don’t always meet that goal, but that makes it even more relatable. I find it heartening to listen to other people discuss how they aren’t perfect, it’s a human connection and their suggestions for self improvement can be inspiring too.

No matter what you decide to do going forward – Remember you aren’t alone!

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!