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.

Positivity and Recovery

Last week I faced my fears and did a bit of public speaking. I did an hours session for 15 people from work about the importance of positivity. I was shocked by how much they all appreciated it.

I was raised a pessimist the way other people are raised as Christian, Hindu or Muslim. My mother’s mantra was always to expect the worst and be pleasantly surprised. However when I got ill, this outlook really held me back from recovery. I was frustrated and angry at my body for not working, and the distance between where I was and my goals seemed insurmountable and getting no closer each month.

It was once I started having talking therapies that I realised how much I was holding myself back. If I looked back at where I’d been a month ago instead of forwards to a distant goal, I could see a lot of progress. If I gave my body love and appreciation instead of hostility and anger my recovery was more noticeable.

So the tips I taught my colleagues were this:

Create positivity around you

By making an effort to be kind and polite to those around you, it makes it a nicer environment. That will lift you up. If you continue a cycle of negativity with a difficult person, you are really just dragging yourself down. Choose to be the kind of person you want to be around. Emulate the behaviours of people who make you feel happy.

Challenge your negative thoughts

We all are prone to assuming the worst, to worrying people think negatively about us, or to dreading an upcoming task. Particularly the thoughts about other’s disliking or judging us are easy to counter. We are all the centre of our own universe, and unless we are interacting with someone, we probably aren’t thinking about them. So if you trip over in public, or embarrass yourself in some way, remember that was a minute part of everyone else’s day even though it was massive to you!

When looking at an upcoming task you are worried about, think about how much you will learn from doing it, how much skill you are showing off, or how much the people you are doing it for appreciate it. Don’t put it off, you’ll only be fretting about it until it’s over, so embrace the challenge and dive in!

Be kind to yourself

When you are feeling down, imagine that all the negative thoughts are being said by someone you love. If they said those things about themselves you would comfort them, tell them how untrue those things are, how amazing they are. Don’t treat yourself any differently! You deserve all the kindness you give your loved ones. You deserve that love too. So be compassionate to yourself when you are feeling vulnerable.

Be grateful

Gratitude is a powerful tool, I could probably do a separate blog on it. The basic principle is this, don’t focus on the things that are making you unhappy. Before bed, or first thing when you wake up take a moment to think about the things in life you are grateful for, the things you are lucky to have. Many people don’t have the luxuries you do, so appreciate them instead of taking them for granted. By focusing on those amazing things or people you have in your life, you will give yourself a little positive boost to start or end your day with. It’s a simple trick to reverse your negative focus.

Overall wellbeing

It’s very easy to blame a particular thing for our unhappiness or our ill health. If it wasn’t for that one thing we would be happy, successful and healthy. Fixating on one area gives us a focal point, but it also gives us an excuse. I can’t fix that one thing, then it’s not our fault. But really, if we are being honest with ourselves, our health and happiness is so much more complex.

Years ago I attended a great talk from someone at People’s Health Trust, he said that health is being physically, mentally and socially well. It’s not even a new concept, it was the World Health Organisation definition of health back at the turn of the 20th century! We often think of health as a narrow and negative field, where we are just trying to get by. However considering it as lots of little things and that good health means all areas are 100%, can give us a higher aim. We aren’t just trying to be well enough to function, we are trying to be healthy and happy in all areas of life.

This broad view is the opposite of our focused blame. It can seem overwhelming at first, but really it’s breaking a big concept down into lots of smaller parts. Don’t let the number of areas scare you, because each one is little and easy to impact!

The way I like to think of this is as though we are a character in the Sims. Each Sim has an overall mood bar, but there is a sub menu of other bars, 6 total covering basic needs. However they now also have extra mood modifiers based on experiences, environment and fulfilment of ambitions. This makes mood much more complex.

You’d imagine a happy Sim would have their basic needs mostly met, but if a Sim has bonuses (e.g. for having fun, donating to charity, being in a nice house, making a nice meal) they can be happy even with a two bad bars!

Likewise, having all your bars being full doesn’t get you into the top level of happiness, the Sim needs some positive bonuses as well as their basic needs being met. In fact they can be almost perfectly happy without their bars being maxed out!

As you see the bars are green in these scenarios, but the bonuses make all the difference!

So try to imagine your wellbeing as like a the Sims overall mood bar. Fulfilling your basic needs will get you so far, but it’s the extra little things that will build you up. Just because you can’t improve one bar doesn’t mean you can’t be happy and fulfilled, you just need to find your bonuses! The little things that make a difference to your day.

Habits

They say it takes about a month of doing something every day to form a habit, however breaking that habit is often a much quicker process. Healthy habits build us up, bad habits hold us back. So what can we do to set ourselves up for success?

Teaching yourself to do something is a personal experience as everyone has a different learning style. You need to consider what you are trying to introduce into your routine and plan at the start how best to do it.

As I said everyone is different, but here are some tips that worked for me:

Time of day – for me I find the morning is the best time to add a new habit, as often I get swept up in the day and forget to do things. For you first thing might not be best, but it can be a good idea to add your new activity at the beginning of a section of your day e.g. when you get home from work. If you say ‘I have to do this before I do the rest of my routine’, you don’t fall into the trap of procrastination and put it off over and over. No matter when works best for you, try to keep the time fairly consistent as that helps to build the habit into your day.
Involve others – if possible (depending on what habit you are working on) including someone else in your efforts can give you added motivation. For example when I wanted to start going for a walk every day, I asked my husband to join me, that made it a bit more fun and also gave me someone to push me into doing it when I didn’t feel like it.
Phrasing – another way to involve others is to talk about your new habit, but to make it an effective reinforcement you should think about your habit like a done deal. “I do this now”, rather than “I’m trying to do this”. By framing your thoughts as though it’s a done deal, you make it a certainty rather than something you might not do. It also means if you don’t do it people may mention it to you – “don’t you normally take a break now?”, to give you an added nudge!
Write it down – something about putting things in writing makes them seem much more official. That can give you a positive boost towards starting this habit. You can also utilise technology to turn writing it down into a helpful reminder. At work, to encourage myself to take regular breaks I have a diary reminder (in bright red!) that pops up at the same time each day to encourage me to have some rest. I don’t have it as a recurring reminder, at the start of the week I add it in for each day, this reaffirms what I want to achieve ahead of time.
Managing setbacks – the hardest part of habit forming is when you miss a day. It is very easy to think you’ve ruined your hard work and broken the habit. That negative outlook makes it really hard to pick up and carry on the next day, it’s easier to think you’ve failed and it’s over. However it’s just one day, even if you fail on day two, 50% of the time you succeeded! Any further in and the majority of the time you did great! Don’t make setbacks into a big deal or they’ll become a big deal. The only reason to think about your setback is to see if you can learn from it, is there something that you can do to avoid that happening again? Positive thinking can make all the difference!

It’s not just you

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

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

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

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

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

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

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

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

Taking Step One

When I’m having a bad day and my energy levels are low it often feels impossible to even think about being productive. Any task can feel huge when you look at it in that mood.

One of the best tips I’ve been given during the various therapies I’ve had during my recovery: Just plan to do 5 minutes of an activity.

If tidying up the living room seems like an insurmountable task, I tell myself “well I’ll do a tiny bit”, and once I’ve done that initial effort it’s only a short step to “well I’m here now, might as well do a little more ..” and before I know it the coffee table is clear and the pillows on the sofa are neatly placed.

If you imagine a car, when you start the engine it’s a lot of effort and noise from the car, then it settles into a steady purr. Your body is quite similar, getting started takes a spike of energy and once you are going it’s a lot less energy to maintain.

Worst case scenario, you’ve done 5 minutes of effort and can’t do more. Oh well that’s more than you thought you could do!

Often I wake up feeling like there’s no way I can make it to work. So I say “well let’s just do as far as we can body”, and I get dressed – still ok? – do more of my morning routine – don’t feel awful? – slow walk to the station etc etc. Even if I don’t make it the whole way into the office, or if I do but can’t stay long, it’s more than I thought I could do. I’ve exceeded my expectations and that feeling outweighs any bad feelings about not managing 100% of my goals.

One caution though – when suffering with fatigue beware momentum! I know I’m incredibly guilty of getting caught up in what I’m doing and overexerting myself without noticing. So always make sure to pause and check in with yourself at regular intervals to make sure you’re doing okay!

Failure is an option!

A few weeks ago I wrote a draft blog for work about the importance of sharing failures in my industry. Since then the thought has stuck with me and grown. Failure isn’t just a thing that happens to companies, it happens to all of us in our daily lives. It’s something every single person has one example of, big or small.

But most importantly it’s okay! We should be proud not ashamed!

If we failed at something it means we tried. Trying is much more important that avoiding failure. If we never tried new things we wouldn’t have art or science! If we never tried in our lives, we wouldn’t have learnt to walk or talk, to live our lives! We wouldn’t know any of the skills that make us who we are as individuals.

Personally, I have a habit of using humour to defuse situations that make me stressed. This means I’m often very open about my personal failings, because I make them into a joke, this makes them smaller, not so serious and scary. I know that doesn’t suit everyone, but I do think it’s important we all find ways to shrug off the times when things go wrong. Our failures do not define us, it’s how we react to them – do we blame other people? Or do we learn the lesson and move forward?

Failure is a great opportunity to learn from our mistakes, to find better ways to do things, or even ways to be a better person generally. If you say something in a conversation and it doesn’t go down well, now you know more about the other person and how to interact with them. If you run out of time on a project, next time you know to start earlier, or use your time better. Whatever the situation you will take something away, a piece of knowledge you didn’t have before. Even if that’s something huge like “this isn’t for me” or “I’m not good at that”. Those can seem scary, but armed with that knowledge you can lead your life differently.

Even when things go well, you usually have the feeling that, in hindsight, it could have gone even better. That’s because through that experience we have learnt and grown. We are not the same person who went in, we are more. Failure is no different. We just need to look at it with a more positive lens.

Every experience you have in life is building you up, you need to stop knocking yourself down and appreciate how far you have come.

The bipolar elephant in the room

At the weekend I read a fantastic article by Hannah Jane Parkinson in the Guardian ‘It’s nothing like a broken leg’: why I’m done with the mental health conversation. It’s very direct article from someone who suffers from one of the less mainstream mental issues – Bipolar Disorder. It’s something most people know the name of, but unlike anxiety or depression it’s not as fashionable to have.

Like any issue that involves episodes of psychosis, Bipolar is not a poster child for the “let’s talk about mental health” movement. That’s because psychosis is a scary sounding word. People having a episode of psychosis don’t experience the same world we do, it’s impossible to relate to that without going through it. So we don’t talk about it, we look away for the difficult diagnosis and talk about being worried or sad, because they are relatable, acceptable.

Having CFS I am lucky to be in the socially acceptable category of mental health issues. One of the biggest surprises I had after being diagnosed was that so many people knew someone who had CFS or ME. People don’t always understand what it is, but it is recognisable, and that makes it much easier for me to be open about. Bipolar disorder, schizophrenia and other less common issues do not have that luxury. They are words we associate with dangerous individuals, words that make us feel uncomfortable. They are diagnoses that we don’t understand, but we use as insults to people who don’t fit our norms. Words we weaponize to mean erratic, different, not like us.

Reading Hannah’s experiences, I saw a huge contrast, we are both frustrated with a lack of control over ourselves, but her highs and lows are both painful – at least it’s only the lows I have to worry about. She speaks of how she is excluded from the current mental health narrative, and that to me is a great injustice.

When we fight for acceptance and equality, we shouldn’t be doing that for select groups, it should be for all. We need to do a much better job of inclusion, of not looking away from things that are difficult or painful to see. Hannah can’t pretend her condition doesn’t exist, so why should be able to? Yes it might be hard to deal with someone who is erratic, but it’s harder for them to live that erratic life. Sometimes we might not feel safe -but nor do the people living with these conditions. The very least we can do is acknowledge their struggles and include them in our fight for better healthcare and acceptance.

Hannah also had some painfully familiar stories about the struggle for treatment, but I shall save that discussion for another entry, as I could go on for hours about the systemic failings around getting treatment for mental health issues – both NHS and private.