Changing your dreams

Imagine you’ve made a gradual change. You’ve lost weight. You don’t notice a big difference because you see yourself every day, then you bump into someone you haven’t seen in 6 months. They are shocked at the change in you – “you look so different!” “Wow you look great!”. Suddenly you see yourself from their perspective, “I guess I have changed lots!”

We don’t think about how we change inside in the same way, but it really is very similar. We gradually change day by day without really noticing.

When we spend our lives working towards goals or often just doing the day to day to survive, we don’t stop to reflect very often. So do we still want what we are working towards? Are our goals the same as they were before?

It can feel daunting to realise that what used to be important no longer is, especially when you’ve worked hard for something. But your priority should be what will make you happy, not a feeling of obligation to your past ambitions or finishing what you started.

What was your dream job when you started, might not give you the same fulfilment now. Your experiences shape and change you, you are forever growing. Embrace your future self instead of clinging to the past.

It’s a scary, but exciting thing to discover you’ve changed, you’ll find potential you never thought possible. Where will your next adventure be?

This might seem a bit abstract and cryptic compared to my other posts, but it’s something I’ve been thinking about lots lately. I’ll reveal more in next week’s post!

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.

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.

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.