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 2nd 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.

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!

Brain fog!

In the journey of recovery from CFS I’ve had to do a lot of work learning to trust me body. I’ve learnt to listen to the signs it gives me and respect its limits. It’s not the easiest thing to do, and I still have moments where I push a little to far, but we are now working together instead of against each other.

For me one of the hardest parts is still the brain fog. I’ve learnt to trust my body, but my mind can’t always be relied upon! Just last week I put a load of clean, dry washing back into the machine instead of the dirty pile next to it. When I realised an hour later I was livid with myself. However, that isn’t productive. It doesn’t stop me from doing the same thing this week.

With my gradual build up of time at work, the brain fog has been my biggest anxiety. As an assistant I need to be vigilant and on the ball, if I’m easily confused or making mix ups, how can I do my job? I’ve had to accept that sometimes I’ll make mistakes. Perhaps they are mistakes I would have made before I became unwell, but now I am much more focused on them and taking them more to heart. The truth is everyone makes mistakes. The more energy I put into worrying about making them, the less I have left to try to do my job in the first place! Objectively I am fine 99% of the time, but by focusing on that 1% I make it seem so much bigger and more frustrating.

The best solution I have found is to slow down. When I rush myself I am more likely to mess up, so I have to resist the urge to be a whirlwind of productivity and focus on each task one at a time. I also try to leave time to double check things once I’m finished. I accept that I am human and I won’t always get it right, but by setting up my day to give me the best chance of catching any mistakes, I am setting myself up for success. If I just fret about what my limitations are I am choosing to do less, and that isn’t what I want for myself.