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.

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?

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!

Depression vs my other conditions

I’ve had mental health issues since I was a teenager, but have only been honest and open about them since my early 20s. I’m now in a place where I am happy to talk to anyone about my CFS and anxiety, but my depression slightly less so.

So why am I more ok with some mental health issues than others? I feel comfortable with my anxiety because it feels reasonable, everyone worries, I just do it more. It’s easy to explain and relate to. My CFS is less easy to explain or relate to, but it’s so much a part of my everyday that I’ve become comfortable with it. It’s a disability and it’s not going anywhere so I’ve accepted it to the point where I don’t think twice about talking about it.

My depression is different. It isn’t there everyday in the same way, it lurks in the background then strikes out of nowhere. I can’t explain it as well, because I don’t really get it myself. I’ve always been lucky to have a lot in life, I know depression doesn’t care about that – it’s the great equaliser, but I am always are of how unreasonable it seems.

Recently I had a big hit of depression, for two days I could only cry and wish it would all end. If that was my anxiety I could take action to reduce it. If it was my CFS I would do stretches or pace myself around it. For depression it was a frightening loss of control. I had to wait it out because I’m already on the max dose of antidepressants and the doctor just called it “a blip”.

I think, being a control freak, that’s why I feel uncomfortable about my depression. I have to ride it out, and no amount of positivity can drag me out of that cave. It’s the condition I deny with “no really I’m fine” because I don’t want to admit how much it frightens me.

Talking about it online is a lot easier than in real life when I was stood in the middle of work balling my eyes out for reasons I couldn’t explain. It’s not embarrassing when I’m unseen. I’m not ashamed of my issues in person either – but it really is awkward sometimes!

I’m not sure what my point is with this one, I guess I want you to know it’s ok. It’s not just you. Even if I seem like I’ve got it all together most of the time I have my struggles too. As a community we have each other and we understand each other.

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.

A Broken System – Mental Health in the UK

People are often divided on opinions regarding the NHS, it is inefficient and often poorly run, but free healthcare is a fundamental part of our country and the staff on the ground work long hours to keep us healthy. I’ve experienced both the NHS and private health insurance, and I can tell you neither works when it comes to mental health.

The NHS

It took from November 2015 to December 2016 to get my CFS diagnosis. I had to queue up in the freezing cold 45minutes before the GP opened to get an appointment.

I was sent to A&E twice because the GP said the first time they weren’t thorough enough with their tests (and as it wasn’t urgent both times I waited 7+hours).

I was referred to a respiratory specialist, waited 4 months for the appointment, only for her in 30seconds to say I should have been referred elsewhere as it wasn’t respiratory.

I was given drugs on the off chance it was gastric, which made me incredibly ill within an hour of taking them.

I was told by a Muscular Skeletal consultant “it could be CFS”, but then just left, my GP unable to refer me to a CFS unit because I was technically still under the consultant’s care.

The CFS unit I was eventually referred to was on the 2^nd floor, I travelled for an hour to get there, then had to drag myself up large steps to reach them. It seemed a foolish oversight, you wouldn’t put a service for broken legs up there!

Even after officially getting the diagnosis I’ve had pretty much no support. When I complained to my GP she said I could have whatever I wanted… What did I want? I researched a treatment and came back, but she then expected me to know my nearest provider too! I have had to become an expert in NHS bureaucracy in order to get anything done, at times my own CFS expert too.

In the meantime, I have spent all of my savings on private therapist s with CFS specialisms. I have pushed and struggled whilst feeling barely able to function. At my lowest ebbs I had to be tough and demanding, because otherwise I fell through the cracks in the system. I can’t help but think about all the people who are not as lucky as I am, who don’t have a strong support network to get them through these struggles. It is so easy to give up.

Private Health Insurance

When someone close to me had a breakdown, I recommended they use their private insurance, as the NHS had been so slow for me. Sadly we quickly discovered the private sector was no better. Due to liabilities the insurance company wouldn’t give us the name of a therapist, we had to research them ourselves then ask if they were on the “approved list”. After the first two not being on the list, the person became overwhelmed and didn’t want to continue.

I spoke for them and argued that they had the list and the postcode, why couldn’t they just tell us who was closest. I had several phone calls and emails arguing for this, but it is against policy, they would not budge. It seems like such a simple request and I strongly remember once crying tears of rage as I argued with the person on the phone – how could the person going through crisis manage when I was so overwhelmed?

I was lucky that the company’s twitter manager was more helpful – they looked into it and gave us a name. It took an hour, when I had previously been fighting for a week. I lodged a complaint, but received a letter saying that since we had booked to see a therapist my complaint had been resolved. It had not, the system that caused so much stress was still in place. They didn’t care.

What is needed

When looking for help with mental health, a person is usually in a vulnerable state. They need guidance and neither of the two options offer that. Long waits for treatment, a lack of options, it all makes you feel defeated before you even start.

It is nothing to do with the NHS being underfunded, as the private sector is just as bad. The systems in place should be set up with patients at the centre, considering their needs so that the healthcare can make them better instead of worse!

In some areas patient centred healthcare is being trialled, and is proven to work. But the industry is old and slow, such drastic rethinking of services is unlikely to happen any time soon.