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?

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.