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.

Self harm – it’s easier than you think

Usually I take the time to make a pretty heading for these posts, but this is an ugly topic and honestly I’ve sat on this post for a week building up the nerve to press publish.

Self harm is a difficult topic to discuss, even in the already awkward area of mental health. Someone who hasn’t ever cut themselves may wonder how anyone gets to that point, or judgemental people (like the first doctor I even confessed self harming to, 5 years into my destructive habit) may say that it “doesn’t count” unless you really go for it and leave scars.

The truth is it’s actually really easy to self harm. You might have done it yourself without realising.

Self harm doesn’t mean picking up a knife and cutting your body, it means hurting yourself. That might sound a bit obvious, but when you really stop to think about it there are a lot of ways to hurt yourself.

An example that comes to mind is a friend who had been through some traumatic life events and was struggling to process them, they carried a lot of (unjustified) guilt and so they drank. They regularly got black out drunk and ended up in dangerous situations. In short they caused themselves harm. They self harmed.

Now many people would not get to such an extreme point, but the truth is this:

Every time you do something that has a negative effect on yourself you are causing yourself harm.

Are you staying in a relationship that makes you miserable? Maybe you are doing that because you don’t really believe you deserve happiness?

Are you eating excessively or avoiding it as much as possible? That probably stems from negative emotions just the same as if you picked up a weapon and injured yourself.

Are you putting up with verbal abuse from someone in your life? Letting them use you as an emotional punching bag? By choosing to let that happen you are choosing to be in pain.

You might read some of those and think “I don’t have a choice but to put up with this or that” – well that is pretty much how people who physically hurt themselves feel. It is an addiction, a crutch or a reflex. It is really hard to not fall back into the habit when you are feeling worthless or angry or sad.

Last week for the first time in 10 years I fell off the wagon and self harmed, but honestly when I sat back and thought about it I’d been doing it for weeks. Eating junk food until I felt sick, avoiding things that make me happy, I’d been beating myself up in other ways long before I touched a blade.

Yet others treated this action much more seriously. I think we need to rethink that. Of course traditional self harm is serious, but that doesn’t mean other forms of it are less so. My GP and my local mental health service had been very dismissive of my distress up until that point, and I don’t think that teaches us a positive message. You can kill yourself with smoking or cholesterol after all.

I guess my take away from this is to consider the the choices you are making and the emotional reasoning for them. If you think you are making bad choices for yourself, talk to someone because it is just as serious as the big scary “self harm”.

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!