Wednesday, 26 March 2014

Talking therapy

So regular readers of my blog will know that I am a big advocate of ending the stigma of talking about mental health issues. Indeed I have talked about my past experiences with mental illness here. But one thing I haven't talked about is the role of mental health when you suffer from a chronic illness and because I've been feeling a bit glum lately, I thought now would be a good time to talk about it.

I believe in many sufferers of chronic illness that will go on to develop conditions such as anxiety or depression, that these conditions are secondary. They are a result of chronic illness. I also think that it can be difficult territory for an invisible illness sufferer to approach due to the belief of some medics etc that your illness is all in your head. Psychosomatic not physical. So if you start feeling psychological symptoms developing a fear could build up of being told "oh yes, well we know you've been suffering from depression all along. You're a classic case with the constant fatigue and not wanting to take part in any activities." Cue rage and more depression from not being taken seriously.

But think of all that we go through on a daily basis; the exhaustion, the pain, the brain fog, the isolation, the inability to do the simplest of tasks, the guilt of burdening others and the grief of losing who you once were. Lately I've been thinking a lot about how I barely recognise myself. Think about all those things and then think well that would make many a person depressed. I think back to the days when I was at my worst with depression and anxiety and sometimes think why were you depressed back then, you didn't have half of this to contend with? But depression doesn't work like that. It can strike whenever and thinking "why am I depressed when I have things to be happy about?" only makes it worse.

Having suffered mental illness in the past, when I was first diagnosed with M.E I thought "well that's it, the depression is going to come flooding back in. How am I going to cope with this?" But having recognised that and having sought help before I knew how to tackle it. I went to my gp and he arranged another appointment with the councellor I used to see. We talked about all the things that I'd learnt from beating depression, coping stratergies etc. It reminded me that I wasn't in the dark, I did have ways to handle it should I need to. Most importantly I had taken the initative to ask for help and that that can be the biggest step to taking charge. I had effectively said "no I'm not going down that road again".

I also went to a drop in centre ran by Mind, where a group of people with mental health issues meet for coffee and different activities. It felt good to be putting coping mechanisms in place. Unfortunately the more the M.E took hold the more obvious it became that having the energy to go to the drop in centre would be too much of a strain on my health.

What I did do though was get in touch with the admin on Mind's website and ask if they had any advice or leaflets for coping with depression with a chronic illness and they sent me links to the ME Association. And from there I started learning about the wider spoonie community, and all the support that they bring.

3 years later and I have to keep reminding myself to pat myself on the back for coping so well. For laughing and joking, even at my own expense. Ok in honesty some days, the worst days, as much as you feel like crying, you can't. You simply don't have the energy. And sometimes that's not good, because it means you're bottling your emotions. Lately I have been having a bit of a dip in symptoms, having those days where I want to cry because I'm so frustrsted because the stairs feel like Mount Everest and the weight of cutlery is just too much. But of course the energy wasn't there to cry. This has meant that as I've improved a bit those tears have wanted to escape.

I have some lovely friends now in the spoonie community but sometimes hearing that they're having particularly rough patches just upsets me more. It makes me think "what have we done to deserve this?" And that is just dangerous thinking. Because the answer is nothing. However, we are coping, we're fighting and laughing. We all need to give ourselves a huge pat on the back.

So I just need to keep telling myself that I am doing it. That it's ok to cry sometimes. You'd be insane not too. That I know where to get help and what to look out for. And that includes from other sufferers that are now friends. We're lucky to have found eachother and have people that understand completely.

So I am going to give myself that pat on the back and finish this post with another great quote (see photo.)

Sian x

Friday, 14 March 2014

The Princess and M.E and The Big Sleep For M.E

Sleeping Beauty photo source: Pinterest

I bet you thought that your only chance of becoming a Princess was to bump into Prince Harry in a London nightclub (chance would be a fine thing) or to wait 17 years until Prince George comes of age. Well think again! As part of M.E awareness day on May 12th and the following week, there are so many events happening to help raise awareness and fundraise for M.E charities. One of which is The Big Sleep For M.E (the link will take you to their website
.)

The Big Sleep is a fundraising event that is inclusive for severe sufferers, that are housebound or bedbound. Because all you need to do is go about your usual day and have a big sleep if you like all in the name of raising awareness. Show people what living with M.E is really like and help raise the illness's profile as well as raise funds for much needed research and a centre of excellence. See my previous post for more information on why this is so important to us sufferers and what The Big Sleep will help fund.

On May 12th and the following week there will be all kinds of sleep related events, some people will go to work in their pyjamas, take part in sleep walks, sleep walkies where you can get your dos involved. The Big Sleep organisers will be doing a prize giveaway, as well as an online disco. I wonder if they will have a chill out music session, like in Ibiza? Some lovely relaxing tunes to get us all calm, ready for sleep.

So where does the becoming a Princess come into it? Well myself and other M.E sufferers on Twitter are going to be becoming Princesses for the day, to help raise awareness and hopefully rise some funds. Why Princesses? Well it came about through a bunch of Twitter M.E spoonies saying that we were the real Sleeping Beauties (we're not vain honest, and most of the time we can look how we feel) and also that instead of having a pea in our bed causing discomfort we have M.E. Although those with fibromyalgia too will know that a pea in your bed (yes, go on laugh) could actually cause you pain. And well because those battling chronic illness day in, day out deserve to be a Princess every now and then. Heck, we're demanding enough. Can you get this for me? Can you help me out of bed? May I have a straw for my drink? So the idea of dressing up as Princesses was born and it has sky rocketed since.

Please note that you don't have to have M.E to join in, everyone is welcome. M.E isn't prejudiced and neither are we. So anyone wishing to join us and become a Princess for the day (go on convince your bosses) and for all the Princesses already aboard the carriage here is what you need to do:

1) Contact me on here or on Twitter @sianwootton

2) The group The Princess and M.E is already registered with The big Sleep but if you want to register separately and be in with a chance of winning a Big Sleep Mascot Bear then you can do so here. Fill in the form and state that you are part of Team Princess. #teamprincess #theprincessandME

3) If you want to have some printable materials advertising The Big Sleep then download them here. This includes logo's suitable for printing or use on the internet, school leaflets, sponsorship forms, parental consent form for photos of children and fundraising and information pack.

4) We have set up a just giving team for fundraising here. As you can see their are 5 princesses already but some pages have more than one name, for those that don't want to set up an individual account, or find it too much. So you can either ask to be put onto one of the already set up pages or if you already have a just giving account you can click on 'join in the team' on our Princess page, just a note to say this only shows up when using the full version of the site. Also note that your chosen charity is set to Invest in ME. If you want to create a new page then use this link and again choose Invest in ME as your charity.

5) On May 12th (although some people are doing it on the 11th due to work) dress up as a Princess, or a Khaleesi if you wish. Those that are feeling too bad on the day please don't push yourselves too much. Put up logos if you have printed them from the toolkit and simply post a photograph of yourself to social media, stating why you are dressed as a Princess. If you're using Twitter put @thebigsleepforme in your tweet or #theprincessandME. You can also Facebook at The Big Sleep Facebook page or on this blog's Facebook page. Or instagram using hashtags #spoonie #MEcfs #myalgicencephalomylitis #theprincessandME #thebigsleepforME

6) Keep an eye out on Twitter and Facebook for different giveaways and competitions, vintage wedding and homes uk have kindly sponsored the event and there are some other sparkly businesses involved too like Tinkerella loubella, they make some great personalised wine glasses and even a sign that says 'shhh Princess Sleeping', oh how apt! There's also Bling Mama, who have some amazingly sparkly shoes, check out the picture of the cinderella shoes below!

If you would like to make a donation use this just giving link. Donate to anyone of the Princesses on there and you will be entered into a prize draw to win a cosmetics bundle from e.l.f cosmetics worth £50 or a Hug Box, a box full of chocolates and sweets. See photo below. Even a retweet or a mention is great as it helps us raise more awareness.

I am also making some jewellery with half the proceeds going to the just giving page, and again anyone purchasing one will be entered into the prize draws. I've posted a photo below with what I've mamaged so far but I will do a separate blog post soon.

Help us spread awareness of us real Sleeping Beauties and believe me all our Princesses are beautiful people, despite battling this disabling illness. The film versions of Sleeping Beauty might have waltzed off into the sunset with Prince Charming but after our Big Sleep Event our big hope is that more people know about the seriousness of M.E and we are a few steps closer to getting much needed research to help us find a cure. That will be our Happy Ever After.

I wouldn't say no to a Prince Charming either

Many thanks

Sian x

Monday, 10 March 2014

Let's Do It For M.E Research and Introducing Love Freckled

Love Freckled products available on www.makeMECrafts.com



I have spoke before about a charity called Invest in ME a charity that is raising funds for biomedical research into M.E as well as raising awareness about the illness. Much of the funding is done through a patient led cause called Let's Do It For ME, you can learn more about them here. Their aim is to raise funds for Invest In ME and fund a centre of excellence, where patients will recieve specialist help and advice, as well as training for doctors and healthcare professionals. You can learn more about the centre here. Also with the help of biomedical research they will be able to offer clearer diagnosis, it is shocking that many who may believe that they have M.E may infact have something else that has not been diagnosed.

This will be life changing for so many sufferers. Bringing hope that finally we may have some answers and regain fuller lives. Just to be able to go into a place where they fully understand M.E and it's impact on patients will be refreshing. Many M.E sufferers really struggle in hospitals because of the busy environment, the constant noise and the awful strip lighting. I'm actually struggling to find the words to describe what this will mean for the future of M.E patients and I don't think that is just the brain fog. It would be a saving grace. Too many people are suffering, over 250,000 in the UK alone, without any clear idea as to why, how best to treat the condition and with no idea whether a cure will be found. We need this centre and this is why the work that Let's Do It For M.E do to promote funding for Invest In M.E Research is so important. They're striving to make M.E known, to raise awareness and give hope to all sufferers that something is being done to help; that we don't have to just 'put up and shut up' as it were.

In my post about crafting I mentioned some of the current events and initiatives that are happening, such as 92 IN 92 and MakeMECraft. There is also The Big Sleep For ME, but more on that in another post, there are big plans amongst the Twitter spoonies. You can get information on all the different fundraisers on their website or blog. There is also lot's of cool spoonie related merchandise on their shop. Invest in Me can also be supported through clothes for charity, simply order your charity bag, fill it up with unwanted clothes, shoes and accessories and then arrange collection. Your chosen charity gets £200 pounds per tonne of clothes. There are so many ways to help fundraise, many at no additional cost to you. These can all be found here. There are so many ways you can get involved, I could go on and on.

Finally I wanted to promote a new seller on MakeMECrafts, LoveFreckled. Check out a preview of some of her products in the photo collage at the top of the post. I think these keyrings and bag charms are adorable and will certainly get noticed; hopefully sparking converstaions about M.E and spreading awareness. I also love the inspirational messages on them. These will be available through MakeME with donations being made to Invest in Me. Janet, the creator of these charms is also one of the co-founders of Let's Do It for ME and suffers from the illness herself. Follow her on Twitter at @lovefreckled.

Please spread the word about Invest in ME and Let'd Do It For ME and donate if you can. All links are available on my useful links page. It's about time we had some answers.

Sian x

Wednesday, 5 March 2014

Psychobabble continued

So today I am going to talk about some of my experiences with psychiatry. Like I said in my last post, Psychobabble, my post about Karina Hansen made me recall some of these memories. Unfortunately not very pleasant ones. I have blogged a few times about my mental health and have linked to these at the bottom of this post. I am not ashamed to do so, more people need to talk about mental health to try and stop it from being a naughty word, in the same vein as other invisible illnesses. However as we have heard many stories are negative ones.
My first experience of psychiatry was when I was around 15, due to depression brought on by ill health. I was a perfectly happy and liked teenager, always on the go, I got good grades, was in the top sets for all my subjects, went horse riding every weekend and was a very promising sprinter, competing most weekends. Then all that changed when I was hospitalized with severe abdominal pain, which months later (of course) they found out was an ovarian cyst. I spent those months curled up around a hot water bottle in agony. The pain killers I was given, ibruprofen, also contributed to more long term stomach problems but it wasn't until months later that I found out it was more than likely I had chronic IBS too. Cue more tests. Anyway, long story short I was in horrible pain everyday, my life as I had known it completely changed and I hated it, I grieved for it.
There is a certain saying that people will only let you be sick for so long, unless it's cancer or life threatening, before they start to lack understanding and this is how I felt. On days, or half days that I could manage school, I noticed how much had changed and people had moved on. Not deliberately of course, it is just a fact of life. I was no longer in on the inside jokes or gossip. The places where I used to sit having been filled by other people. I found it incredibley difficult. I was always really embarrassed and paranoid by my condition. It all took it's toll on me and I became depressed and experienced panic attacks. My GP referred me to councelling at NCH, National Children's Home, but when I told my consultant they sent me to a children's psychiatrist.
I remember going there and it was a bad symptom day, which was in part due to nerves. The buiding was old, with bars on the windows and his office was more like an old study or how you 'd expect Sigmund Freud's office to look. A place that did not seem to promote well being, in fact it added to my nerves. Had I been any younger I think I'd have been screaming, thinking I was about to be locked up. As he was asking questions I began to sense that the implication was that my physical condition was being manifested in my head. Something that became very obvious when he said that the way in which I was curled up on the sofa with my hot water bottle, or clenching at my stomach whilst on the toilet in pain was affecting my mood. Well yes it was affecting my mood, but it was not causing me to be depressed. He said that if I sat upright that I would be in a better mood, as though that was all it took for me to feel better. At this point, having the advantage of being able to distinguish sound advise from a load of crock (to put it mildly) I knew that I wasn't being taken seriously, nor was I going to get the help from him that I had wanted. I also asked for my Mum to come into the room, to help give her perspective and also because I kept needing to rush off. This was met with some reluctance. The implication being that if I was away from my parents that I would open up more, that I could talk freely. Because of course all depressed children clearly have abusive parents. It only led to me being more disgused and anxious to get away as well as the effect that had on my stomach.
I remember getting home and breaking down crying, begging not to have to go again. How could someone that was supposed to make me feel better make me feel so horrible? My Mum rang up to explain that I wouldn't be going again. That the session had done more harm than good. However he rang the house and said that I personally had to say that I no longer wanted to go. Meaning that even thouh I never wanted to speak to him again because of how upset he'd made me, I then had to speak to him. The sound of his voice actually made me shudder and my own voice was so quiet from not wanting to speak. For a while afterwards I kept fearing that I would see him somewhere, especially if I had hospital appointments. Of course then because you have refused treatment that was offered you are thought to be uncooperative and do not want to get better. I was lucky that I had the councellors at NCH though to help. There, all the rooms were cozy, and bright and had lots of toys, not that I needed them but as a place that is aimed at helping children this is always a good sign. I would always be offered a drink and my parents were always made to feel welcome not a part of the problem.
I have had other experiences with psyciatrists, which you can read about here and here, oh and here. This was the one experience that reading Karina's story really brought back though. Yet, it is nothing compared to what she is facing. To think that you are safe and in a caring environment and then to literally be snatched away from that is the stuff of nightmares. I dreamed for a while after refusing to see that psychiatrist about him finding me and locking me away but to know it's happening in real life and over and over again is horrific. Again more peope need to believe in Karina an believe in M.E. Please keep sharing my post about her and keep up to date through Facebook and Twitter. It is greatly appreciated.
I also wanted to share another story of misdiagnosis. Where a woman was diagnosed with anxiety and depression, when she was actually suffering from lung cancer http://www.telegraph.co.uk/health/healthnews/9917862/Professor-dies-of-lung-cancer-after-doctors-dismiss-illness-as-purely.
Misdiagnosis and mistreatment of physical conditions as psychological or 'all in your head' is extremely dangerous.  Here is a link https://www.youtube.com/embed/j8gABEg-lJs to a video from the Coalition for Diagnostic Rights an organization helping those facing misdiagnosis.
There is a need for psychiatry but we need to make sure that the voices of those with physical conditions are not silenced and that they get the correct treatment. Not only to prevent physical conditions worsening but also creating deep 'real' psychological and emotional problems.
Have you had any experiences of being misdiagnosed? Or with psychiatry good or bad? Please share if you wish.

Monday, 3 March 2014

Psychobabble

My post about Karina Hansen really got me thinking about the ways in which I have come across psychiatry over the years. First of all I want to state that I have no aversion to psychiatry as a whole. Good psychiatrists are much needed and sought after and I have nothing but praise for their help and treatment of patients experiencing distressing psychiatric conditions.

Before I move on to talking about my own experiences (I will do this in a separate post, otherwise it would be quite an epic post) I thought it best to try to explain the differences between psychiatry, psychology, psychiatrists and psychologists (sorry if that was quite difficult to read.)  I have often been confused by this and I'm sure many others are too. I have used NHS Careers page to help me research this.

Psychiatry- is a medical specialism, concerning the study of mental illness and the many disorders within that bracket. It is a study of how to diagnose a mental illness, the varying symptoms involved and ways to treat and manage these conditions.

Psychiatrist- is a doctor that was earned a medical degree and chosen to specialise in psychiatry. A psychiatrist will be responsible for evaluating and assessing a patients mental health and diagnosing a course of treatment if necessary, which may include committing a patient if they are thought to be a danger to themselves or others.

Psychology- is the study of the human brain. It is not a medical specialism. It involves studying human behaviour and the reasoning behind why we do certain things. The way in which our feelings impact our bodies and our interaction with others. It is most prevalent in the study of child development to assess whether the child is acting, reacting and interacting to certain benchmarks, such as learning to speak one word and progressing to putting several words together.

Psychologist- It is not necessary to have a medical degree to become a psychologist. There are many universities and colleges offering psychology courses and it is a very popular subject. A psychologist is concerned with the way the mind works, usually focusing on work within the mental health sector. We commonly think of them in a counselling role, helping people to cope with difficult situations be they life events or mental health disorders and work on resolving underlying issues affecting a patients mental health.

You may also come across psychotherapy/ psychotherapist's. We had a psychotherapist at the M.E clinic. Psychotherapy can be a talking or more practical based therapy and be done as an individual or as part of a group such as families. It helps people to work through stress and conflict. For example if they are working with children they may use play or arts and crafts to analyse interaction, or issues they cannot vocalise. Analysis is a key feature of psychotherapy. A psychotherapist may have a background in psychiatry or psychology as well as more specialised training.

Hopefully this has cleared up some confusion. If nothing else then at least I have learnt something. Stay tuned for some of my experiences with psychiatry. If you have not done so then please see my post about Karina Hansen and spread the word.

Sunday, 2 March 2014

Something good happened!

So I just wanted to share that last night I managed to get out to a friends 30th birthday party. I'm suffering today so it will be a short post and I'll put in some photos after all the effort it took to glam up and look less like a blobfish.

All week I'd had my fingers crossed, hoping to go but my health was really poor. Not just M.E either but my stomach decided it wasn't very happy either, which of course only went and made the M.E even worse. However I woke up yesterday and lay very still and tried to preserve some energy. And Hallelujia! I was feeling well enough to go.

I paced getting ready, doing my make up in bed then lying down before getting dressed with some help. I was dreading using up all my energy getting ready and then feeling to bleugh to be able to go out, which has happened before. But all went to plan.

My sister came with me to help me navigate and to go to the bar and attack the buffet for me. Hehe she did look a greedy piglet carrying two plates worth. Also because it's nice to have some time with my sister and give our parents a little break. Navigating the multi storey car park was funny as it was one without lifts, so we had to use the ramps. They're blinking steep! Luckily my sister was not wearing high heels. That honour was all mine. I have taken to viewing needing to use a wheelchair as an opportunity to wear heels. I wouldn't be able to otherwise. Although I did have some flats to get to the car. We also had to go over a speed bump, photo included below. I had to take a photo as I found it so hilarious.

We had to rearrange some furniture to get to a table at the back of the room. I thought that would be best what with all the sensitivities to noise and light that comes with M.E and also to avoid being knocked. It just so happened that a friend was sitting there too. Unfortunately the heating in the room was on the blink, much taking apart of gas cannisters was happening. It was so cold, I think that might have had a big affect on today's 'hangover'. Hunching up and the cold have left my muscles very stiff and sore. The noise didn't bother me too much and the disco lights only began to irritate me when they made the rest of the room pitch black, which was also a bit scary to navigate in. I could have done with some lights of my own, as well as a horn.

I didn't stay too long but I was just so made up to have got out and do 'normal' things. My friend was so made up that I made it out too. The payback was worth it! We have to look after our sanity sometimes over our bodies otherwise we will resent the illness even more.

Enjoy the pics. 1) The earrings I made to go with my outfit. 2) My outfit 3) Flat shoes to walk to the car 4) The speed bump!