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:

  1. Emptying the house of snacks
  2. Deleting my fast food ordering apps
  3. 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:

food log

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.

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?

  1. Give yourself plenty of time to do things at your pace
  2. Let others be in charge of any extra thinking if you can
  3. 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?

  1. Find low impact ways to enjoy your holiday activities
  2. Discuss plans in advance of day trips to manage expectations
  3. Don’t put others’ enjoyment before your health
  4. 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!

  1. 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.