M.E Awareness #millionsmissing

I've been ill for 3 years now. It's strange how when I say that it sounds like a long time but when your life isn't moving forward then time stands still somewhat.
I've come to have a better level of acceptance of having m.e. and the way my life is as a result of it. Something that does bring up a lot of emotion is still having the feeling of not being 'believed' when I tell someone that I don't feel well or I'm really tired. When they see me looking relatively ok with some make up on it might be hard to comptehend that I actually feel unwell 24/7 because they either have never heard of m.e. or don't understand that it's a lot worse than just feeling tired.

May is m.e. awareness month, May 12th is m.e. awareness day where across many cities around the world demonstrations are held. I attended the event in Edinburgh. It was the first time that I was surrounded by other people who either had M.e. or knew someone who suffers from it. I usually would suffer a lot of anxiety being in a crowded environment. However, I actually felt quite calm knowing that it was ok that I felt too tired to stand, and like many people sat on the ground. I didn't feel like I had to act like I was 'normal' when I felt unwell.

There were speakers who shared their stories as well as music from a choir and a country band. Surrounding them were many pairs of shoes lined up to show the severely ill people who were not able to attend these events in person. Attachted to the shoes were notes telling us a bit about the person's story and how long they have been unwell.

The symbolism of the empty pairs of shoes carries a powerful message that we DO exist and we are not invisible. We are just missing for school, work, social events because we are struggling with a misunderstood illness that robs people of their lives.

This is why is it vital that there is more awareness for how severe an illness m.e. can be for a lot of people. And that more funding is needed from the government so that vital research can be done to find out more about why this illness develops and hopefully one day a way to help treat the millions of people around the world who are affected.  #millionsmissing

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Setbacks

The last year I have spent a lot of time looking into different M.E. programmes and into nutrition. I've had an incredibly stressful time trying to apply for ESA and PIP since I cannot work right now. Then there is the daily struggles of family and keeping in touch which friends.Therefore I feel like I have been mentally and physically drained a lot of the time. I put a lot of focus and dedication into things I want to achieve but when  I have so many elements that I'm trying to work on, it becomes difficult not to be exhausted by it all. 

There has been slight improvements I feel over the last few months, I have been able to go out a little bit more, even just going round the supermarket felt like an achievement again for me. A lot of that is down to my change in diet with help from my nutritionist. I actually managed my first night out with friends since becoming ill, which was huge progress for me.

However, with the more that I am doing it has meant that I've had a couple setbacks so far this year which last a few weeks.  It is definitely not easy to deal with when you feel you have a glimmer of hope for it to be taken away again. You start to see old patterns emerging of becoming more isolated and emotionally drained. So many little things can bring me close to tears. Spending so much time at home makes me feel like I'm in the film Groundhog Day. The days and weeks blur together and I feel I have done so little in the time I have been ill. 

Symptoms that I haven't seen in a while decide to make an appearance again, chest pains that feel like you've been kicked in the chest, dizziness and brain fog. Not to forget anxiety has been turned up again with the all too familiar signs of panic attacks. Basically everything has been heightened.

Then I start to question all the decisions I've made over the last few months, did I have to go to the shop on my way home, did I have to stop for lunch after my appointment. 

Every time I have another setback I start to panic that I'm not going to feel better again, or that I'll end up bedridden again (I never want to experience that ever again). It's easy to forget that I have gone through this already numerous times. And each time I got through it and gradually my symptoms lessened. It's easy to let doubt creep in, making you think your not strong enough that your failing in some way. Then I think, I have been through a lot of shit and handled it pretty well. I am a lot stronger than some people may think, and even more than I realise myself.

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Super Boost Juice Recipe

I have been trying out some juice recipes recently and this one is my favourite just now, It's called the Super Boost juice because it gives me a boost of energy afterwards. 

 

I never fully appreciated juicing before, now I understand how beneficial it can be. It is such a quick and easy way to get so many nutrients and vitamins into our body. I have noticed a boost in my energy levels since juicing. It is a great way to add more vegetables and fruit into our diet. Even on a bad day when I am struggling for energy I can still manage to make a juice, as I know how much better I will feel afterwards. Juices can be very simple with just a few ingredients or can have a lot of ingredients. It's a good way to sneak in things you don't normally have. For me I would never eat pineapple normally but I enjoy it in this juice.

 

Ingredients:

Half a pineapple (with the skin removed)

3/4 Gala Apples

Celery Stick

Handful of Spinach

2 inch chunk of cucumber

Wedge of lime

Half an Avocado

Ice Cubes

Method:

Slice the Pineapple and Apples into smaller pieces that will easily fit into the juicer. Place all the ingredients apart from the avocado into the juicer.

You will also need a blender/smoothie maker.

Pour juice into blender, Squeeze the juice from the lime, Scoop the avocado out of the skin and add into the blender and add ice cubes. Blend on full power for 1 minute.

 I use the Philips viva juicer-hr183251-400w-green which was on offer for about £40. I love how it looks and is very simple to use. All the pieces come apart easily to clean as well. Any kind of juicer will work though you can find them from about £20 upwards.

It turns into this lovely green colour, which I was unsure about at first. However it tastes so good. The avocado adds a creaminess to it and the squeeze of lime juice add a kick.

It makes a litre of juice which I store in the fridge for a couple of days.

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Small Moments of Happiness

I have spent the last few months spending more time seeing my family and friends that I haven't spent much time with this last year when I have been feeling well enough. I managed to go to my aunties wedding which was a huge step for me. I wasn't sure how it would go, if I could even sit through the ceremony. I did last ( thankfully it was pretty quick). We went to the pub afterwards, and even though I wasn't drinking it felt nice to be more social. Unfortunately I felt the effect the day after with a severe migraine and felt very fatigued. To me it was worth the aftermath as it was a rare occasion were I was able to go out and socialise and spend some time with my family. I knew that if I had not have gone I would have to deal with feeling regretful. It was something that I knew for months that I wanted to go to, it was important for me to step out of my comfort zone and get comfortable in the uncomfortable.

My niece also turned 14 recently and we were invited round to my sisters for dinner. They live only 5 minutes away so I knew that if I was feeling unwell it was easy for me to go home when I wanted to. I was surprised though that I felt ok sitting with everyone for a couple of hours. It was really nice to watch my niece and nephew laugh and joke around with their friends. I was having a good time that I didn't think too much about how I was feeling and wanting to leave straight away. I think if you are doing something that you enjoy then you are not thinking about yourself and pay less attention to your symptoms.

It is too easy for me to give in to the illness and become more recluse, not wanting to jeopardise my current level of health. One of my biggest fears just now is my health deteriorating further again, to the point where I am bedridden, unable to even walk for 5 minutes. Any time I get a cold it brings me to tears because of the fear that I will be set back even further with my recovery. I know I need to stop thinking about going backwards and how unwell I have felt before. Each day brings new possibilities and the chance of change.

I am trying not to give in to this fear as much as I can. I accept that I am chronically ill and it is not something that will be cured my a magic pill or I will wake up one day and it will be gone. I have to decide how I want to live my life now even with this illness, it does not been that I have stopped living. My life might be considerably different now compared to a year ago, but I am still here and need to continue moving forward.

I want to be happy, which seems like the impossible sometimes when I feel so unwell. I am trying to find happiness in those around me and simple things that I enjoy doing. So that even on a day when I am feeling really unwell I can still find something to make me smile. Even if it is just watching a programme I like or playing with my dog. I hope to venture out and be more social even if I am not feeling great. I think a change of scenery would definitely to some good.

In life we should not take these small moments of happiness for granted. A lot of the time we can choose whether we are going to be happy. We can choose to see the good in people/life. We can choose to do things that we enjoy and will make us happy. We can choose to avoid people or things that are negative/stressful.

To me happiness is not one big thing but an accumulation of lots of small moments that we can treasure.

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How to Manage Anxiety, De-stress and Find the Calm

 

Everyone can benefit from finding the calm...

Learning how to relax is not just for those who feel anxious, stress can play a huge role in your daily life. Whether it is work related, money problems or just the train is crammed full of people and you find the stress levels starting to rise. Stress and anxiety can manifest physically causing a number of health problems which is another reason to find ways to manage it.

The first thing I want to talk about is mainly for those that are going through high levels of stress, anxiety, depression and are finding it difficult to cope and it may become overwhelming. To begin with it is very important that you speak to your doctor and tell them how your feeling. Don't feel embarrassed or feel that what your going through it is not important. You might be surprised by how understanding they are. They should give you the tools to help such as different websites to look at. In certain cases they will suggest antidepressants, this is entirely up to you if you decide you want to take them. I would suggest doing your research before making any decisions. I personally did not feel that I would benefit from them and with having CFS I did not think my body would cope well with the medication. My doctor gave me a list of local counselling services for me to contact and make an appointment. They all ran on a donation basis and the one I chose to go to started from £3 to £30 a session, so you can pay what your are comfortable with. Initially I was sceptical whether I would find counselling helpful. I thought how am I going to spend 50 minutes talking to this stranger. Well after I started opening up about what I was dealing with I found it really easy to chat away. I left the session smiling, feeling like a weight had been lifted. I decided that I wasn't going to spend all day every day worrying about my illness etc. Instead when a worrying thought came I would put it to one side and then when my weekly session came I would talk about it then. It has not cured my anxiety, however I have found that I'm not as stressed and worried all the time. I cannot tell you how important it is to have someone you can talk to about your problems and not to keep it all to yourself. You might be able to talk to a friend or family member open and honestly but it is not always easy. With a counsellor you can say exactly how your feeling and you won't be upsetting or offending anyone you care about. They are there to help not to judge you. Due to my health worsening I wasn't able to make the journey there anymore so had to stop going. Luckily I now see a private counsellor who lives nearby. I was also told about a counselling service over the phone which might be more convenient for some people and it is free. This is available through the NHS. The website is: http://www.nhs24.com/usefulresources/livinglife/

Something else that I have been practising for a few months is meditation. I tend to only meditate when I am feeling anxious at the minute. However it is something that with practice and dedication I would like to build up to doing it daily in order to see the full effects. There is a few free apps that you can download to your phone that has guided meditation sessions that are normally 5-10 minutes long. They go through the steps on how to meditate, such as your posture and breathing. The one I like to use is The Calm App because it has relaxing sounds that you play while you meditate. I sometimes just play the sounds when I can't get to sleep to help me relax. The other one which I have tried is Headspace, which is very straight forward and easy to use. It also depends on the persons voice guiding you, whether you actually find it relaxing to listen to. If your someone that gets stressed or anxious whilst travelling then you can easily put your headphones in and listen to the meditation. There are also plenty of videos on Youtube on meditation if you do not want to get an app. If you have trouble sleeping at night there is a kind of mindful meditation you can do while you lie in bed that I was told about from my counsellor where you scan your body. Lie with you arms by your side and close your eyes. Then starting with your feet, you tense your muscles while you take a deep breathe in, then when you breathe out relax your muscles. Repeat this 2/3 times then move up the body to your calves then thighs ect. Until you finish with relaxing your face muscles. If any part still feels tense go back and do it again. You might even find you drift off to sleep before you finish because your so relaxed. By continuing to meditate you will start to see that it comes with a lot of benefits. Some of these are:

I have recently been looking more into mindfulness which can be used whilst meditating but after continued practice should become a way of being. Mindfulness is about being in the moment and deliberately bringing your attention to this moment in time and not on worrying thoughts. It is not about keeping your mind clear of all thoughts but putting those worries aside when they come and refocussing your attention to the moment. For instance if you go for a mindful walk you notice every detail, such as the trees, cars, the sound of the wind and birds. You are finding the joy again in the life's simple offerings. Mindfulness carries a lot of the same benefits as meditation, including  an increase in compassion and gratitude. By slowing down and appreciating life everything we do can become mindful. I have been reading a book called The Little Book of Mindfulness 10 minutes a day to less stress, more peace by Dr Patrizia Collard recently. It has a lot of 5-10 minute exercises/tips on mindfulness and some lovely poems. It also talks about the body scan in more detail that I went over before. One thing that the author talks about is accepting what is. Which is something that I have had to do with CFS. But you have to do it with any illness you have, taking a mindful approach and accepting what is.

Another book which I would recommend is Calm: calm the mind, change the world by Michael Acton Smith. It is written by the same person who developed the Calm app. It is a beautifully visual book, full of colourful pictures. It again focuses on mindfulness and meditation and is interactive with a number of exercises to complete. One suggestion the book has it to start writing a journal daily. Which is something I have taken up over the last few months. It can be incredibly therapeutic and can reduce stress. Sometimes just writing down your thoughts and fears and be enough to help clear your head. Plus it will be nice to have something to look back on in years to come. The book has 3 questions that you can answer every day when you write your journal:

1. What made you feel calm today?

2. What are you grateful for?

3. What were three highlights of today?

Walking and being out in nature can be incredibly calming. When we walk we release endorphins which can relieve pain and increase positivity and relaxation. It is a good way to clear your head and relieve some stress. Even though I can't walk very far just now I still love just getting outside in the fresh air and take my dog with me. I listen to music and watch the world go by. I've become to know the people who live near me a lot better than I did before because now I pay more attention to what's happening around me.

Calm: calm the mind, change the world



Lastly I thought it was worth mentioning another book which I got recently. This one is not for reading as it is a colouring book for adults. I have heard a lot about them recently and they are also known for being therapeutic. You can buy mindfulness colouring books as well as Harry Potter and Vogue ones. I one I chose was Millie Marotta's Tropical Wonderland a colouring book adventure because it was full of flowers and animals. I quite happily sit for hours colouring in a picture and I love it. It honestly focuses my mind on what I'm doing instead of other worries. I find it very relaxing and I get a sense of accomplishment when I finally finish a picture. Another bonus is they are quite cheap and should take you a while to finish.

I hope that you will find some of my suggestions helpful in your search for finding the calm. Mindfulness and meditation can be applied to most aspects of your daily life.

 

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Let's Talk About Anxiety

I think I have always been a worrier even as a kid. I can be shy in social situations and have never been the most confident person. Whether I am just more likely to suffer with anxiety because of my genetics or past experiences I don't know. Everyone will experience some kind of anxiety which is normal. You might have an exam or a job interview and you feel stressed, worried, sick. This type of anxiety tends to only happen with situations like that but it doesn't stop you living your life. What I now suffer from is a generalised anxiety disorder. Which can cause me to feel anxious about almost anything. It is not just physiological symptoms of worry but there are also physical symptoms that can make it that much scarier and harder to manage. It affects almost every decision I make about my life.

General anxiety disorder (GED) is more common that you might think, with 1 in 25 people affected. In my opinion anxiety has gone from having a lot of stigma attached and no one really talking about it, to recently becoming more featured in social media. I think that it can sometimes be glamorised a bit even though more recognition is good, it should be done in a way that highlights what a terrible illness this is and no one would ever want to go through it instead of being seen as no big deal.

After I first became ill I was in a shopping centre and started feeling very shaky, weak and hot. I thought I was going to faint, my heart was racing and I couldn't breathe properly. I was so scared because I was by myself and didn't know what was happening. That was the first time I had a panic attack. It took me a while to realise that it was anxiety that caused me to feel this way.

Personally my anxiety can be triggered mainly in social situations. Even by leaving the house. I don't go anywhere far by myself, if it involves taking a bus then I need someone to come with me. I think this is because I fear having another panic attack. Every time I have had one it has been when I am by myself in public. It has knocked my confidence to go out now. If I know I have to go somewhere I start thinking "what if" and go through all the worst possible scenarios that could happen when I go out. So before I even go out I'm already sick with worrying. When I am out in public I have an irrational fear that people are looking at me and judging me.

When I am in this anxious state, my mind is over analysing everything and I can feel very scared. My heart rate will go up and my hands will shake. I'll start sweating and feel very nauseous. I basically want to get out of the situation I'm in very quickly. I hate feeling like I'm trapped and feel claustrophobic. I can't just relax and try and enjoy what I'm doing. I don't even have to be doing anything to feel anxious but the worries I have are still at the back of my mind. Worrying about the future or about my life before I became ill, feeling like you don't have any control over your life anymore. None of it does any good, all you have control over is the right now. What you can do in that moment to help yourself tomorrow.

You can feel very lonely at times, even if you have a great support system like me. Because unless you have experienced it yourself then it is difficult for someone to understand. Like CFS, anxiety can come on suddenly and it doesn't have a quick fix. A lot of people can really suffer but are too scared to seek the help they need. You don't have to do it alone! It is easy to become stuck in coping with anxiety but you don't have to just cope with it, you can make changes to help overcome it one day. Don't let it take over and control you.

CFS does make you more susceptible to be affected by it and anxiety also makes living with chronic fatigue more difficult. I wish I could live without anxiety in my life, and one day I will hopefully get there.

My doctor suggested this site on anxiety. I think it is very helpful if your looking to understand anxiety better: http://www.moodjuice.scot.nhs.uk/anxiety.asp

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