I salute you BBC 3

I have to say that I am impressed with the coverage that mental health is getting on the television lately. BBC 3 inparticular have been very active in showing a range of documentaries that show the range of people that mental health can effect. From celebrities to teenagers. Mental illness like any physical illness can affect anyone no matter what their circumstances. And yet it is still so taboo, so misunderstood. It's a dirty secret that gets swept under the carpet because it doesn't comply with the image of being 'capable.' But like with chronic illness how can anyone begin to understand it or understand someone that suffers from any form of mental health issue if it is ignored? I hasten to use the words to see mental illness in a good light because mental illness is a dark dark place. Perhaps what I mean is that these documentaries and the accounts of people that have suffered from a mental illness show the strong people behind these conditions. They show that they are 'normal'. That they are people not an illness and that through all the horrors that they face from the condition or in getting help they are strong and determined.

Recently I spoke to another ME and Fibromyalgia sufferer about how people often forget that we are more than an illness. We are still people. People with interests and passions, curiosities and complexities. We don't just suddenly stop being a person once we become ill and just become a hospital number. If anything we need things to hold onto even more. We certainly don't want to be sick, we want to relinquish the lives we had before or try to forge new memories and achievements.

And this is exactly the same for those with a mental illness. Only the biggest battle is with your own head. Part of you can say yes I'm going to live my life whilst the other slams that thought down at every opportunity. Telling you not to be so stupid that YOU could never do that. It is a betrayal by your own mind. It can be particularly difficult when there is nothing physically wrong. You have the 'ability' to live life but your head says no you can't. With a physical illness people will understand somewhat. Especially where medical evidence is obvious (ahem so not ME/CFS or fibro). But with a mental illness unless you know the signs it's hard to detect by others and the lack of comprehension, taboo and even disgust surrounding it drives it even more undercover.

Not long ago I watch a series on BBC 3 called 'Don't call me crazy' that filmed the daily goings on in a teenage mental health unit and yesterday I watched I watched a documentary called 'failed by the nhs.' The latter was presented by a young man, Jonny Benjamin, who had schiztophobia, a combination of schitzophrenia and depression. Before being diagnosed he had been to his GP and A&E a few times in a manic state and attempted suicide. He had gone there to desperately seek help. Scared that he didn't know what he was going to do. But he never got help. Only tranquilizers. On one occassion luckily his friends took him to A&E but they were asked whether he was simply being 'dramatic' or 'putting it on.' Which lets face it is shocking. Who would want to pretend to want to end their lives?

Unfortunately, Jonny found many more similar cases. It is stated that anyone presenting at A&E with a mental health issue should recieve a psychic evaluation. However many people don't. Even when they have been treated for the physical signs of mental distress such as self harm and even ligature marks. Others have been put straight onto anti depressants without any warning of the potential (and please note that word because different drugs work for different people) side effects. One man was put straight onto 60mg of fluoxitine or prozac as it is also known and the massive chemical overhaul in his body made him even worse. I have had good and bad experiences with fluoxitine. In my late teens it worked well but when I tried it again a few years ago I shook so much I thought I was having a fit. Luckily I knew that something just wasn't right and I was able to see a doctor who changed them and gave me tranquilizers to help me counteract the madness they were causing my body. Consider me lucky or unfortunately knowledgeable about these things.

Luckily any time I went to A&E with massive panic attacks I was able to see a psychiatrist. Although the wait was always long and distressing. A&E units are scary, noisy and manic places. You see you have to wait for a psychiatrist and a psychiatric nurse to become available from the psychiatric ward or unit. But understand this as in all wards at night there is only basic cover. Don't quote me on this but I'm sure there is only one psychiatrist on night shift, that is at the hospital I was at. So as you can imagine you can be in for a long wait, in which time your anxiety levels can rocket even more. I too have had doctors at an out of hours service dissmiss me as 'a tablet seeker' or 'young and has no need to be in distress.' Neglecting to even put the visit onto my record as it was 'of no concern.' It makes me angry just thinking about it. It was very very lucky that I knew better despite my added anxiety.

The stories presented in this documentary were shocking. They had basically had to rely on their own resilience to get them through and to find something within themselves that could stand the fight to want to get better. It is truly sad. You go and beg and beg for help because you are at your lowest ebb and often will not recieve it. If you went to A&E with a broken leg, it would be x-rayed and plastered and you would recieve crutches and advice to help you. But there is still such a quandry surrounding mental health (and chronic illness of course, don't worry not forgotten) despite it affecting 1 in 4 people.

Luckily a new act has been passed the health and social care act 2013, which lays out that mental health should be treated as equal to physical health and therefore hopefully it can recieve much more funding. This also gives me hope for chronic illness too. That more can be done to help understand illnesses such as ME/ CFS and Fibromyalgia. A cause. A cure would be bloody lovely.

I understand that so far I may have painted a poor picture of mental health services but there are positives. Like I said fortunately I did get to see a psychiatrist when I went to A&E. I've had some great GP's who actually knew the art of listening. All of which I've laid out in my post "ME and mental health". There are also some great charities who work tirelessly to advocate mental health in a positive light such as MIND and time to talk. When I was first diagnosed with ME I thought I'd really struggle mentally so I went to a local drop in ran by MIND and saw someone straight away. Just talking and expressing my fears was relieving. Unfortunately I never made it back there as sleep took over my life but I'm really grateful to them. So there is help out there. It's just a shame that what we would automatically assume is our first port of call to get help can sometimes be not very helpful at all and unless you know about other services then you can feel completely cut adrift. So spread the word folks. And BBC 3 I salute you.

Www.mind.org.uk here
Www.time-to-change.org.ukhere

Don't sweat the small stuff

Wow my last 2 posts have been pretty depressing haven't they? But I strive to be honest and present a true picture of life with a chronic illness. Like I have said in the past we the sufferers are the only ones that can really tell you what it's like. We may not have a medical degree but we know our own bodies. I read some great advice today in a great blog laughingfrommysickbed.blogspot.com by a lovely lady named Irene who has taken a place in my heart so I hope she doesn't mind me paraphrasing (brain mush). She said that no doctor or specialist no matter how well researched they are will ever tell you to just listen to what your body is saying. Never mind graded excercise programmes or pacing if your body doesn't want to play ball it won't and if you don't listen to that then you have an all mighty battle on your hands.

Remember my post about physiology? About our natural instincts that we relied upon to survive. This is the way we are programmed so why do we so often ignore it? If why body says it wants to sleep for 20 hours then I figure that's what it wants. No, it probably isn't good but who says? Of course we should always try new things that are suggested to us. Hence my series of posts on what I learnt at ME/CFS clinic. We do of course want at least some relief and wish for a cure. Oh how lovely that would be! How many times have you gone into an appointment with raised hopes? Hoping that what they say, suggest, prescribe, inject, take out etc etc will solve all your problems. Okay, you probably know that it won't. Nothing is ever that simple but still there is that hope, that instinct to survive.

Today has been a completely bed bound day. I just wish someone would have told my bladder. Just sliding onto the commode when it was right beside my bed was worthy of some very inventive curse words. The day my elbows give out I'll surely be lost. They are the key to getting up. I have to say it's totally scared me. Doing very little gives your brain plenty of time to well think. To get carried away. To imagine that this will forever be your life. That you will always be weeing in a bucket. Oh shut up brain, you naughty sod. Don't try and bring me down too. Yes, I'm scared but there's always hope.

I guess it doesn't help that I look around my room and it's just a tip. It is clean though just untidy. Clothes are piled up (still some from Greece oops). I have various bits of nightware all around my bed because my tempretaure is tempremental (ooo never realised the connection with those words, dippy me).  There's a new picture, well it's not a picture probably more art I don't know what it would be called but I like it and wanted something new to look at. Anyway whatever it is needs hanging but there's never a good time. I have loads of unopened letters and bills in my side drawer. Thank goodness I know what they are and for direct debits. And my calendar is still on March. However does it matter?

Like I said my room is clean. My bills are paid. No it's probably not conducive for good sleep hygiene. But these are such small things that in the grand perspective do not matter. Okay they could be sorted on good days and when I can I will, bit by bit. But on my good days I want to use my spoons to better my mood. To make memories however small. To laugh. Get downstairs. Socialise. Get out if I can. These will be the things I remember later on in life. Not whether my room was neat and tidy.

So to sum up the last few days have been testing in every which way. I think the neighbours might have thought Dexter was here. But let them. But you know what I still have fight in me. Even if it's just to get the right pain killers. And I shall heed my own words and many before me that laughter is the best medicine as is rest. Will have to research who coined that phrase.

Goodnight all

Inventing new swear words

So as the title suggests over the last few days and definitely the last 12 hours I have been inventing a fair few new swear words to express the extent of the pain that is hijacking my body. I've screamed. I've cried. I've sworn. I've taken all my tablets (gabapentin) and extra pain killers (cocodomol and even the dreaded ibruprofen). I have a hot water bottle on my thighs and a tens machine pulsing away on my back and yet I still am in pain. I don't want to be touched but need help and just wiggling my toes sets me off into a diatribe of ugly curse words. I phoned the out of hours doctors but all they could say was that there wasn't much they could do. Cue more crying and curse words.

But today wasn't supposed to be like this at all. Well any day is not supposed to be like this according to society and I would very much love that.  But you see today I was supposed to be going to Turkey on holiday with friends. When it was booked my ME was much more fatigue dominated. Not that it isn't still but now there is the all consuming pain that has left me wheelchair bound too. Yes overwhelming fatigue is debilitating enough but I could still care for myself a lot more. So after going to Greece and needing a wheelchair to get onto the plane being able to go to Turkey has been a doubt in my mind.

I looked at the resort and to be fair it did look very wheelchair friendly with lots of ramps and flat areas but it was far from the town, which could only be accessed by bus. Something tells me Turkish buses wouldn't be very wheelchair friendly. Nevermind taking the bus twice a day for 2 weeks just to be able to go eat dinner. Plus if I feel asleep during my meal it would have been a nightmare to get me back.

But more than the travelling and the wheelchair logistics it was about needing to be cared for a lot more. As in personal care. Would my friends really be comfortable helping me bathe, washing my hair, get dressed or even helping me on and off the toilet when needed? Not really. Nor would I be comfortable with them doing it. Sometimes it frustrates me having my Mum do it. What's more this was their holiday. They deserved to we having fun and going out exploring not looking after me. I couldn't put that pressure on them. The guilt that comes with putting others out just by me having this condition is already enough without ruining a much needed holiday. My friend even admitted that she would be a rubbish carer. So that was that one out of the window.

Yes I did manage to get to Greece not so long ago but like I have said I know the place, I know the people. I have fallen asleep in the restaurant (right next door) and they don't get offended. They help me out and then ask how I am the next day. They don't try and ply me with alcohol because they know it will make me more ill. Even when I'm over here I get messages of support and well wishes. What's more I go with my parents. So they are there to care for me. Yes I want them to not have to and to be able to enjoy their holiday but at least the pressure is off a bit because they don't have to work or cook or clean.

Some people will think it's strange goinh on holiday with your parents in your late twenties but that's the way it is. It can do us good as a family. Especially as we have become so reliant on one another. I'm just grateful that I can go away with them when my health permits. That we have a great relationship. At the end of the day if I was well I probably wouldn't be going on holiday with them or maybe not at all as I'd be out there working,  working working.

Anyhow enough blogging distraction techniques. I am going to try and get some sleep. Think it will be the only way to really shut off this pain.

Are you better now?

The other day I got asked this and to be fair I got quite angry. Seriously had they not been listening to me? Did they not understand? But you know what to paraphrase Christine Miserandino (mother spoons) again I know I have been on about her a lot recently, anyway how can I explain an illness that I can hardly explain to myself. For a while now I have been wanting to post an article that I found and after that incident I think now I have found the perfect post for it article. It is all about living with an invisible illness and the effect it has on sufferers and their carers. It explains that society will only 'allow' us to be sick for so long, that people with a chronic illness or chronic pain are uncomprehendable. Toni Bernhard explains that 'yes it's okay to get sick or be in acute pain due to an injury or surgical procedure, but then we're supposed to get better.' Oh how I wish that was the case but this is the perception that people have of health. The only other alternative that we really know is of terminal illnesses. But ME, CFS and fibromyalgia or many other chronic illnesses do not fit these categories and when it is a young person suffering from them it is even less easy to comprehend. I am sure many people look at me in my wheelchair and wonder why I am there. I am not head to toe in plaster cast and nor do I look overly 'sick.'

But there lies the crux of the matter. When I am that bad I'm lucky to be able to move around the house let alone to get out, even with a wheelchair. Today I was in so much pain that I couldn't even face getting up to the doctors. Sounds daft right being too ill to go to the person who is supposed to help you get better. But when your whole body is whracked with pain and you're feeling pretty delirious with it you're going nowhere. However on those days that we can get out and maybe socialise Bernhard again says 'if they see you doing anything "normal" they assume we're 100% well.' They can not fathom that we 'came from the bed and will collapse on it after,' even after something as simple to them as going out for coffee. It is as though we are expected to be either on or off, sick or not, okay or not okay. You are out so therefore you must be better. Many a time I have heard those phrases Bernhard references 'hit the gym' and 'stay in shape' and I have reacted poorly. But can you blame me? They knew full well that I was no slacker and was obsessed with working. Obviously now personally using a wheelchair does dispel that myth somewhat but there have been plenty of times where people have thought me better, even when they know I use a wheelchair.

They can little understand the consistency of a chronic illness, how it never really goes away. How it dominates everything. It is not like having a cold, then recovering and then catching another. You have it ALL THE TIME. It just varies in its severity, like the volume button on a stereo, it can increase and it can decrease but often it's not you controlling the dial. As much as it pains me to say it ME is at the centre of my world, everything revolves around it. It has to in order for me to try and tackle it. But that is not to say that I give in to ME. I do not want my friends and family to only think about ME when the think about me. There is a person behind all this pain and fatigue. A person that still wants to love and laugh and care as much as she did before. I want to socialise, and spend lots of time with my family. I want to enjoy meeting new people and learning new things. I want to enjoy seeing my nephews grow up, even though they cannot rugby tackle me anymore. I may not be able to be there physically as much as I would like but know that I will listen and do what I can, when I can. Do not stay away because I have enough to deal with. Yes I definitely do. But I don't want to be defined by my illness. It just may have to be when I am not having an all out flare.

Yesterday I was in all mighty pain even after my painkillers and usual extra methods (heat, electrolyte drink, massage) so in a bid to distract myself I asked my Mum to take me out. Oh bleep bleep bleep it was painful but to the outside world, maybe even to my Mum at times I'm sure this wouldn't have come across. Yes again I was in my wheelchair but I was trying my best to just appear okay. To not give in to the pain that was gripping my body and turning my stomach. I had found myself trying to 'get on with it'. Maybe a small part of me had thought "well, this is what life is going to be like" and to literally grin and bare it. To not let on how much pain I was in, feeling miserable and guilty and dragging other people down with me too. I'm sure they've had enough of me whingeing about how much pain I am in. But trying to not show the extent of your pain for a few days is tough. Trying to keep it at the back of your mind when your body is fatigued and  you can do little to distract yourself is nigh on impossible. Today I have been in a great deal of pain (I'm writing this at 3am oops, so maybe I mean yesterday). To the point where it took me ages just to get my phone from the side of my bed to text for help. The amount of times I had deliriously wondered why I was trying to use my hand as a keypad is beyond me. There was no question of grinning and bareing it. Then again, I did not brake down in floods of tears either as I have felt like doing. I simply did not have the energy to. The pain had my eye balls rolling and my concentration non existent. Everything was just pain.

Life with an invisible illness is tough for both sufferers and their carers. It's hard to know what to do. Do you go out and try to grasp some kind of normalcy? Or stay at home and be 'ill'. I guess the answer lies in the balance. Do what you can when you can. Surround yourself with people that understand when you are lying ill in bed or out having a coffee. Sometimes we do have it both ways but usually our lows outweigh our highs and those lows can certainly make us appreciate the highs all the more.

Things I learnt at clinic: Diaries- Also known as how many spoons so I have?

Example diary

I hope you enjoyed reading about the spoon theory. My mum made me laugh by saying "why spoons? Couldn't she have used sugar packets?" Oh Mum I love you although I am probably in trouble now for writing that. Sorry I do not have the answer to that one, I'm sure in her moment of inspiration Christine Miserandino did not really give that much thought into what she used to help get her point across, she just wanted to get her point across. Yes, 'sugars' would be a nicer nickname for us sufferers of chronic illnesses. But could you imagine the complications of enquiring into how you take your tea or coffee? "How many sugars do you have?" "Well I haven't showered today and I drove instead of walking here, so I'd say I have about 8 left." Could get complicated.

Anyway, as Christine Miserandino says it's important to know just how many 'spoons' (I almost wrote sugars then) that you have at your disposal. But how do you do this? How do we open that cutlery drawer in our brains and see just how many spoons we have to get us through the day. Whist I was in clinic they were very keen on us using diaries or charts  but they they weren't just any kind of the diary. Just look for yourselves at the above image. You may think it looks quite complicated but once you understand its intricacies it makes more sense.

Basically it is a chart that horizontally lists the days of the week and vertically the times of day  in 2 hour time slots, excluding overnight- because you should be sleeping. To avoid confusion for you it's my scrawl across the very to, noting the hours that I had slept, as that's important to make note of too. The aim of the diary is to fill in each space with what you have been doing for those two hours. For example Monday 8am-10am breakfast. And so on as the day goes on. They have chosen a time slot of every two hours a it serves as a constant reminder of what you have been doing and how you felt before brain fog sets in or it's the end of the day and you are desperately trying to remember all that you have done that day. Because noting everything down really does give you a better picture of where you are using your 'spoons' without generalising or surmising on the day that you have had. By completing the chart every 2 hours it gives a much more honest picture that will help you more in the long run.

From the image you will also notice that there is writing in both blue and red. This is intentional- there was no pen crisis. This is because what we needed to do was to write in blue ink if were experiencing a bareable level of symptoms, that you have felt okay or hopefully good for those two hours. Or to use red ink if those two hours were awful and dominated by bad symptoms. By doing this every day too it was a way of looking for patterns. Do you mostly have red mornings and more blue afternoons or vice versa? Or a blue day then a red day? It can also help you appreciate that for 2 hours or so that day it perhaps wasn't too bad. Not get to the end of the day and say that it was all completely terrible, because that is how you have been feeling for most of the day.Yes, 2 hours can be a long time and you can very easily go from feeling okay to screaming in pain in that time. If not many times during that time but you can use the colour ink that relates most of those two hours. Let's face it if you had to record things more than every two hours that may get too annoying. Every two hours can be annoying enough.

You will also see that in each space there are smaller boxes with the letter M, E, P and numbers in them. The letters stand for 'mental', 'emotional' and 'physical' and relate to the amount of effort each activity has taken. 1 being the lowest number of effort and 10 being the highest. So let's say that you had been reading then generally you mental effort number will be higher and depending on what you are reading then your emotional effort number could be higher. For example a thriller novel or a weepie. Obviously depending on your symptoms and mood your numbers will fluctuate. So for example if you are reading a thriller whilst being in a lot of pain then your overall numbers are going to be high. If you are in a lot of pain and have been doing something physical then your physical number will be really high, but it will also take it's toll emotionally and mentally too. Of course the key is to when you're feeling in pain to lower your physical activity but that probably comes naturally anyway. But also to not over exert yourself emotionally and mentally too. Of course generally M.E sufferers will generally expell more effort than non sufferers as it is.

But overall these numbers serve to find out what your overall numbers are for each day. So at the end of the day (if you're not too tired) to add up the numbers from the mental, emotional and physical columns and then add them all together for your overall total for the day. This number alongside the colour ink helps you to see how much effort that you can use up without going into a flare, suffer from post exertional malaise or can make you feel not too bad. For example if you feel terrible at the end of the day or experience post exertional malaise, which you would know from the use of red ink and of course because you feel absolutely shocking (don't need a pen to tell you that) then you have probably used up too much effort and can therefore see where you can cut down on your numbers or use up less spoons as it were. So the aim is to find that balance of numbers that allow you to have a completely blue week, where you don't feel too bad. Of course ME is changeable and at times you will have to lower your numbers to coincide with your symptoms. Right now my numbers would be much lower than from the example diary above, as I do very little due to the change in my condition,  certainly physically.

So that is one way of keeping track of how much energy you are using. How many spoons you roughly have at your disposal every day. Likewise you can do it as more of a list. Whatever is best for you? It's certainly good for people in the early stages of ME, when you are so confused and wondering how you can no longer do what you used to. Although it certainly can seem like a lot to have to fill it in every two hours. Lately I have become rubbish at charting my day (other than blogging, that is) but I guess after a while it becomes instinctive. You know how much your mind and body can take. As much as it frustrates the heck out of you.