Blast from the past.

I have just found this :) I wrote it when I was at a higher percentage than now (obviously), when I was attempting to complete my Social Work degree. Thought people might like to read it. Here we go......

Disability has a stigma attached to it. Fact. No matter what new policies the government brings out this week, no matter how much people try not to discriminate it still does. This, if you look hard enough is obvious; you merely have to look in the right places, from the right perspective.

Anyone who has ever been in a wheelchair, even to muck around, or as part of a task with the objective of helping one sympathise with the disabled, will know how heavy they are and how hard they can be to push alone. Now add to that uneven pavements that slope towards the road, kerbs, cars, people, stairs, lifts that don't work, automatic doors that don't open, lack of ramps and having to use a separate entrance from "normal" people. The embarrassment of boarding public transport, the way everything screams to a halt as you get on, with employees and often complete strangers assisting you whilst everyone else stares. The way it makes you feel. You are wasting everyone’s time.

The people who stare at you do so with blatant curiosity, which turns into open mouthed staring when the reason you are confined to a wheelchair is not immediately apparent. The looks of pity or revulsion are harder to handle.

The world is made for able-bodied people. The disabled among us merely struggle to cope.

Welcome to my world.

It is a common misconception that all people who use wheelchairs can't walk. This is not true. Many in fact can walk a short way and use a wheelchair to allow them to do things that other people view as normal. Going out for the day, getting groceries, going shopping. To these people a wheelchair represents freedom, as constricted as it may be it is wholly preferable to the alternative.

I am one of those people that use a wheelchair and can walk. Don't judge. It is for this reason entirely that one sketch from Little Britain is the bane of my existence.

M.E. does not mean I am confined to a wheelchair permanently, in fact quite the opposite. At my current percentage I can walk through the world as a normal person, in pain, tired but alive. I can go to university for 2 days a week and I can work my job as a barmaid for 6 hours (only ever 3 at a time). I can get on and off the bus and walk the short distances I need to. I can cope.

But what my friends and colleagues don't see is the rest of the time when I'm exhausted and in bed. When my legs and arms ache, when I'm stuck in the bath, when I can't form sentences better than a three year old and I can't remember how to make a cup of tea. They don't see the times where I wander around one floor of my house, unable to reach the other, desperately holding on to anything to keep me upright. They don't see me rigorously planning rest periods and medication to achieve the small amount of normality I have succeeded in establishing.

I am impossible to please. Most of the time I don't want anyone to think I'm ill, I want them to believe that  I am just another boring, normal, average person. But other times, when I'm feeling awful and really need that seat on the bus I want a sign explaining everything. I don't want to talk about my disease but I want people to understand, to be aware, to make an effort. I don't want them to ask if I'm ok, or how I'm feeling today, but I want them to show concern. I am tired of lying. "I'm ok" or "fine, much better thanks!".  But people wouldn't want to hear the truth, "shit, same as always but thanks anyway", that grows tiresome.

This is me, not M.E. I want people to understand.

Feeling a bit sorry for myself.

I don't like being like this. I don't like feeling sorry for myself, and I know I shouldn't be. I am really lucky to have what I have, a beautiful daughter, a wonderful husband and a loving and supportive family. But someday's I just have enough and I find it all a little too hard to deal with. Today, it seems, was one of those days.

Usually there is a trigger, some day's it's pain, some days it's mobility and some times it's just how generally yucky I'm feeling. Today it was none of these, today it was something else entirely. Today myself and Chris got turned down for a house we wanted to rent. For most people it's not a massive deal. For me, this time, it felt HUGE. We weren't told why we were turned down, even following the insistence of the estate agents that the landlady wanted to meet perspective tenants and make a decision herself, of course we had no such meeting. She may have just simply chosen to go with someone else, but I would quite willing put money on the fact that it is because we are on housing benefit, which we obviously are, but it is not as simple as that. We only receive a small amount of our rent through benefit, the rest, which is also the majority, is made up my Chris's wage. We struggle, but had found the further £55 a month we would need to rent this house. I felt we were just passed over, I always thought that if the landlady wanted to meet people then we would at least be able to stand a chance, to explain our situation. But no, screwed over again.

This house wasn't perfect, far from it in fact. The downstairs was lovely, the upstairs could be nice with some work but the bathroom, well nothing could save that! So why you ask me, why am I so disappointed and upset that I didn't get it. Well people, location, location, location. Those of you who frequently read this will know that my family are a massive source of support to me when it comes to both my health and my daughter. My parents and my sister and her boyfriend both live on the same estate, the same one where I grew up and this was only a few minutes walk from them. As Chris can't drive and I can't even learn this was so good. That and the fact that it would also only be a couple of minutes walk from my best friends house. So, why don't I just look for another in the area? Well, it's not that easy, for some reason (possibly the bathroom) this was about £150 a month less than most others in the area. So it simply won't happen. I cried for ages, I was always taught if you work hard you can accomplish anything. I worked hard, I worked so hard and all I manage is to work myself into permanent disability and poor health.

I need a magic fairy God mother/father to give me £100-150 per month for the foreseeable future then I would be able to choose between about 5/6. I wish. I wouldn't have to worry massively about relapsing and being stuck at home all the time then (as I wouldn't live in a first floor flat), Niamh would have a room that was bigger than a glorified cupboard and we would have a garden. I would be close enough for my family to easily to get to me if I needed them, and we would be in a quieter area with a lower rate of crime. But that is just a dream, for now, perhaps for a long time.

I really should stop moaning, I have it so much better than so many other people out there, it just got to me. Sorry for the downer, hopefully tomorrow I'll be in a better mood. Night folks!

Mr Media machine strikes again.

Ok, so someone else has hit a nerve, this time it's Ian Duncan Smith and some stuff he's said recently published in The Sun. It has made my blood boil. It is all about The Sun's campaign to basically name and shame those fraudulently claiming disability benefits.

Now don't get me wrong, there are people out there wrongly claiming those benefits available for the sick and disabled (as I have said before, on many occasions) not everybody claiming disability benefits is doing so honestly, legally and with good reason. But, that said, the situation is the same for many other types of benefit. There are people receiving pretty much every available benefit that could work, but choose not to. However, I really want to know why the media wishes to focus mainly on those with claiming disability benefits? Of all DLA claimed, only 0.5% is claimed fraudulently, so, knowing this, I fail to see how there could be a lower fraud rate on any other benefit?

So then, back to my rant. Why, oh why does the media want to paint such a horrid picture of the sick, the infirm and the disabled? Like we don't have enough to deal with, like we don't already suffer enough stigma without the media fuelling a hate campaign against us?

I wholeheartedly agree that those claiming and not deserving of it should be brought to justice. But the media repeatedly fail to explain the existence of fluctuating conditions, ones like mine. Someday's I can walk short distances and function as a relatively normal person (all be it when that normal person has the flu), other's I am in a wheelchair outside and on crutches in order to take even one or two steps and sometimes I cannot get out of bed at all, not even to go to the toilet. How is that going to look to Joe Bloggs who has been convinced that I must be cheating the system? When one day I can't get out of bed and the next I am that one that answers the door when he calls? It's going to look BAD.

But my house is adapted, I have countless pieces of equipment that I need in order to function and without which I would be even more incapable and helpless. I have lost a lot to this illness, dignity, independence, self esteem, my social life, my education, my career and the list goes on. But now the media appears to be convinced that I need to loose people's respect as well. Why thank you Mr media machine that's just what I needed! The bottom line is I only receive DLA, and I NEED that money. It makes my life that little bit better, it pays for equipment that helps me, it pays for repairs to existing equipment, it pays for me to buy certain types of food that are more expensive but directly benefit my health, it pays for vitamins and minerals that aid me but that I cannot get on prescription. It is my lifeline and it's not enough, but I am SO thankful for it. Contrary to popular opinion (in my case at least) every penny of it goes on things that aid me in living with my health condition and I would take being healthy and loosing my DLA over remaining disabled and loosing so much of my life. Any day.

I'm sorry for all the ranting recently. I have just had enough of the media picking on the disabled. I know it hits a nerve with me, but so could issues surrounding housing benefit, council tax benefit, child tax credit and working tax credits but these benefits are not being picked on. These people are not being picked on. Neither are many others, just some of the most vulnerable people in society. We don't need this, we have lost enough of our lives to these impairments, these disabilities, these illnesses without being continually abused by the media and the uneducated idiots that must believe everything they read. The government are already threatening to take away the little we have, finding us "fit to work" for employers that won't give us jobs. Won't hire us because we are too sick. Putting us through rigorous and health endangering tests and appeal after stressful, humiliating appeal, for nothing. People that (somehow) manage to claim these benefits fraudulently are WRONG, there is no doubt about that but please, stop tarring us all with the same brush.

I can't work, not in any conventional job anyway, but that doesn't stop me wanting to. I have lost not one but two entire carers to these illnesses, because I pushed MYSELF, worked too often, too hard and cared too much. I am not work shy, in fact sometimes there is nothing I would want more. I am from an east end family with an extraordinary work ethic. But I cannot work. I still have hope, hope that one day I will be well enough or lucky enough to find an employer who is willing to let me work very erratically from home. But until then, stop it and leave me alone, leave us alone. Please. We already have enough on our plates.

M.E awareness day!

Today, as I'm sure most of you know is M.E awareness day. This week I have had my thoughts focused mainly on two aspects of the illness, and not in anyway the symptoms. More on the public perception of the disease. I have discussed with people, read about and watched videos, all surrounding the same two issues. The invisibility of the illness and things that people say to sufferers, mainly in ignorance, and sometimes (thankfully rarely) to be intentionally malicious. So this is what I have decided to write about today.

Let, me just say this, when you see people with M.E or any other invisible illness, you usually only see the mask. The mask that most people show you will be smiling, looking relatively "normal" whilst inside they could be and probably are feeling far from it. They will try to present themselves as happy and positive, not really letting on at how they are physically feeling. This is the case for me personally, and for many other people I know. Just because we don't look ill doesn't mean we aren't and just because we try not to act sick doesn't mean we don't feel it. On the other hand, just because we are unwell doesn't mean we have to or want to look it and just because we are ill doesn't mean we have to act it. These are all to often society's misinformed assumptions, if you're sick you should look and act it. You shouldn't be a happy, smiling, positive person. You must instead, look horrendous, play the invalid, cry, frown and be depressed. I am in no way implying that this is the opinion held by most, but it is unfortunately (and I have personally experienced this) the opinion of a delusional few. These people are the reason for this blog, these people are the reason I try hard to raise awareness as it is normally through ignorance that these opinions are formed. It is this reason that M.E awareness week is SO important, to show the truth, and hopefully, in turn, be a little better understood. I was linked to this video, produced by a young M.E sufferer that combines both of the above issues, but especially illustrates this mask worn by many sufferers. So here it is, and a big thank you to Poppy, who is just 13 years old.

Personally, here is my mask, that face I like the world to see:

And here's the truth:

The other point I have been thinking about a lot lately is things that are said to sufferers. I honestly believe in my time with this illness that I have heard them all, possibly more and if I haven't I would be exceptionally shocked! Some examples include:

• "Well, you don't look ill" (Good! Who wants to look ill?)
• "Oh, M.E? Isn't that CFS, that thing that makes you feel a bit tired isn't it?" (No, not always, and a BIT tired, like diving in a swimming pool makes you a "tad" wet!)
• "My (enter obscure relatives name here) had that, she/he's fine now!" (Really? Oh well good for them). 
• "Have you tried the lightning process/acupuncture/massage/positive thinking/hanging upside down from your ceiling like a bat?" (Okay, so I haven't really heard that last one) (Oh, and I've tried them all, they didn't work for me, imagine that!).
• "You just need to pull yourself together!" (Well hell, I hadn't even thought of that, I'll get right on it, note the sarcasm).
• "You should try CBT or GET, my aunt's a doctor and she said that's what she recommends!" (I have tried both, CBT didn't work, GET made me worse, be sure to tell your aunt that!).
• "You should go on a holiday, somewhere hot, sunshine and holidays always make me feel better!" (So, are you paying?)
• "You get to stay in bed all day, I'd love that! You're so lucky!" (Seriously? It's not like I'm lying there watching TV, or reading, would you choose to be stuck in bed for years at a time? Soon looses it's "joy").
• "What? You're still ill? It's like you've been unwell forever" (Tell me about it!)
• "You can't feel like that all the time!" (Nope, sometimes I feel worse!)
• "Is there nothing you can do? Nothing you're not allergic to?" (Yes, there are things I can do, it just takes time, equipment and lots and lots of planning. Plenty, although sometimes even I wonder!)
• "You can't come out again/ you're going home early again" (I wanted to come out but strangely enough as I'm sick and my illness varies the two weeks I spent resting to come out for an hour simply wasn't enough, and I thought it was the thought that counted. Yes, I am going home early "again" it took weeks of resting and will take weeks of recovering just for me to be here for this long!).

So, next time you see us don't offer advice, just ask us how we are, ask us questions, we don't mind. Talk to us about your life, tell us funny stories about your kids and your pets, make us laugh. Most importantly, think about us when we are not there, as often that is when we need kind thoughts the most. Send us a text or an email, without expecting a reply. It will make us smile, even if it has to be read to us. 

Here is a video highlighting these very important things, thank you to Becki Luscombe for making this awesome vid! 

That's all for today folks, this entry took me a long time to write but was worth it as it is SUCH an important issue, let's raise awareness and stomp out ignorance. 

M.E misconceptions debunked.

This won't be a long entry, and I didn't manage to post yesterday as I really wasn't good. I feel much better now but will tire fast. Anyway...

The other day one of my online friends who also has M.E linked me in to an article, published in The Mail, of all places (in case you hadn't guessed I'm not normally a fan). To be honest I was actually pretty nervous about reading it, the stuff published by this paper is usually poorly written, poorly researched and just plain wrong! So I was very pleasantly surprised (for a change) when what i read, was instead, an honest, well written, well researched and heartfelt account that STOOD UP for people with M.E and, in fact attempted to dispel the myths and misconceptions that surround the illness. It was written by a journalist by the name of Sonia Poulton and was published on the 8th May. So, Sonia, on behalf of myself and probably many members of the M.E community, I say a BIG thank you. I have copied and pasted the article below, and it can be found on The Mail's website here.

"This week is Myalgic Encephalomyelitis Awareness Week or, as it's more accessibly referred to these days: M.E. That may not mean a great deal to you. Certainly, it didn't to me.

Oh wait, yes it did.

Based on no personal knowledge whatsoever - fortunately neither I or my loved ones have M.E. - my judgement was gleaned from how the world has portrayed the illness.

Like millions of others, I have seen M.E. through the eyes of the medical establishment, the Government and the Media. The picture has not been good.

Here is what I have previously understood about M.E. and those who have it.

M.E. sufferers are workshy malingerers. They whine, constantly, about feeling tired. They are annoying sympathy seekers.

Damn it. We're all tired. Especially those fools like me who work all hours God Sends (and even some he doesn't) to support the type of people who say they are too tired to work.

Oh, and mostly, importantly, M.E. is 'all in the head' and can be overcome with a bit more determination and a little less of the 'poor me' attitude.

That, generally, is what I thought about M.E.

Until, that is, a reader sent me a DVD of a British-made film about the illness titled 'Voices From The Shadows'.

I receive dozens of clips and films each month, and I try and see as many as I humanly can, but there was something about 'Voices...' that stopped me in my tracks. 

One of the reasons the film had such an impact is because it challenged my deep-seated preconceptions about M.E.  

Through 'Voices...' - and the subsequent research I have conducted - I have come to realise that what I thought I knew about the illness was a fallacy but, more importantly than that, was actually detrimental to those affected.

So, as a naturally curious individual (I'm not a journalist by mistake) I began to question why I had been furnished with one version of events - and inaccurate ones at that.  

The more I began to delve into the subject the more curious it all became.

Like for example, why are records pertaining to ME locked away in our national archives in Kew for 75 years? The normal period would be 30 years.

75 years, the period generally used for documents of extreme public sensitivity and national security, is excessive.

The reason given, that of data protection, is a nonsense as it is perfectly acceptable, and easy, to omit names on official documents. The excuse, supplied in Parliamentary questions by the Department of Work and Pensions, didn't wash with me.

Why, I thought, were they making such an exception?

It got me thinking about what information the files actually do contain. And, seeing as the topic of M.E. is still beset with misunderstanding, we could all benefit from some enlightenment on the subject.

So, to this end - and seeing as it M.E. Awareness Week - here is my personal guide to shattering the myths and blatantly-pedalled untruths about M.E.

Myth No. 1: ME is a mental illness

Not so. It is a neurological one. It is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is. Psychiatrists have bagged it as 'their thing' and the General Medical Council has been somewhat remiss in suporting it as a physical condition.

I spoke with one ME sufferer, who asked to remain anonymous for fear of upsetting the medical professionals who are currently treating her. She said a new GP at her practice had suggested she take up meditation to help her combat her decades-old condition.

Thankfully there are some doctors, few and far between admittedly, who really understand the physical nature of M.E.

Dr. Speight, a medical advisor for a number of M.E. charities does. Commenting on the wide-ranging debilitation of the illness, he has said:

'The condition itself covers a wide spectrum of severity but even the mildest cases deserve diagnosis and recognition because if they are given the wrong advice or don't handle themselves correctly they can become worse.

'At the more severe end of the spectrum there's a minority of patients who are truly in a pitiable state...some of them in hospitals, some of them at home...and this end of the spectrum is really one of the most powerful proofs to me of what a real condition this is and how it cannot be explained away by psychiatric reasons.'

Sadly, there are still many health professionals who buy into the notion that M.E. is a psychological disorder and should be treated as a form of insanity.

In Denmark, only last week, The Danish Board of Health sought to remove a 23-year old woman, Karina, from her family home on the grounds of mental illness despite the fact that what she really has is M.E.

Karina, bed-bound, light and sound sensitive and too weak to walk is considered to be insane, rather than physically sick, and her family has been repeatedly told by Danish doctors that the diagnosis of M.E. is not recognised.

Myth 2: ME is just extreme tiredness, right?

Wrong. Despite falling under the Chronic Fatigue Syndrome category - as does Fibromylgia which has its own Awareness Day next week - it is entirely wrong to assume that M.E. is merely about lack of energy. 

This confusion arose over the past 20-odd years and is due to the condition being re-classified as a Fatigue Syndrome.

The result of this has been to trivialise the illness which has served as fodder for ill-informed public commentators who have used M.E. and Fibromylgia to talk about 'scroungers' in the benefits system who are 'too lazy' to get out of bed.

For those who know about the illness, this type of commentary is viewed as dangerous rhetoric that deserves to be classified as a form of hate crime.

Myth No. 3: M.E. is just like a bad flu

Oh, if only. M.E. is a complex, chronic, multi-system illness that affect the body in similar ways to Multiple Scelerosis. In addition, inflammation of the neurological system can lead to heart disease, extreme muscle pain and other debilitating and life-threatening conditions.

As one doctor put it, comparing M.E. to an illness like flu is like comparing Emphysema to a chest infection. It seriously undermines the truth extent of M.E.

Myth No. 4: M.E. sufferers should just 'pull themselves together'

Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families when they have failed to respond to 'tough love'.

Too many people assume that M.E. can be overcome with the right mental attitude. This consequently leaves M.E. sufferers even more vulnerable to issues like depression as they are further isolated.

M.E. is not a case of the mind being able to heal itself with determination.

M.E. breaks the body down and that also includes the brain.

Myth No. 5: Only adults have M.E.

Children have M.E. and their childhoods are destroyed as a consequence.

Margaret Rumney of Allendale, Northumberland.watched as her 11-year-old daughter, Emma, was reduced to a shell of her former self when she was struck down with M.E. nine years ago.

"Since then it has been a continual rollercoaster of emotions and has been one fight after the other," says Margaret. "It is very hard for my daughter being ill, she is virtually housebound, often reliant on a wheelchair, and to have to cope with disbelief and ridicule on top of this makes this illness even harder to bear. 

"Our experience of my daughter's school was an awful one. When my daughter was receiving home tuition organised officially by the Education Welfare Officer we were threatened by one professional that if my daughter didn't return to school that it would be classed as a psychological issue and social services would get involved."

Threats and intimidation of this nature at the hands of the authorities are a constant feature of those in the M.E. community, and particularly those caring for children with the illness.

Naturally, this pressure merely adds to the overall anxiety that sufferers are already experiencing. Education is key. Bullying is not.

Myth No. 6 - You can 'catch' M.E.

A hotly contested issue. Data suggests it's possible but the true cause is still subject to much debate among the more knowing professionals. What appears clear, however, is that ME seems to follow on from various viral infections, including meningitis. More research is needed.

Myth No. 7: Real M.E. sufferers are few and far between

There are currently 250,000 recognised cases of ME in the UK. That's 1 in 250 so that's hardly an insignificant number, is it?

Myth No. 8: Only severe cases of M.E. are worth acknowledging

Terrible misconception. M.E. ruins people's lives even if the patient is not entirely bedbound.

The media tend to concentrate on the worst case scenarios but this does not help the full situation as it leaves others, who are still able to move at times, with the stigmatisation of 'not being ill enough'.

Claire Taylor-Jones, a mother of one from Rhyl in North Wales, has been unable to pursue her ambition of becoming a solicitor after she was diagnosed with M.E.

In common with other sufferers, Claire has good days and bad days but she is not consistently well enough to pursue her goals and she is left in a type of limbo land. Her plans are on hold.

Myth No. 9: Children with M.E. have neglectful parents 

There's the notion that children with M.E. are actually victims of mothers who have Munchausens by Proxy – the illness where parents act as if the child is sick to further their own need for attention.

This is a particularly dangerous belief system as it leaves the true M.E. sufferer without sufficient support and diagnosis and the carer is treated as the problem.

Myth No. 10: Physical exercise will benefit M.E. sufferers

Absolutely not true. Worse, still, enforced 'graded exercise' can escalate the condition to dangerous and irreparable levels for the patient.

During the research of this subject, I have watched footage of hospital physiotherapists literally bullying M.E. patients to stand and walk. It is pitiful to witness.

The physios say things like 'Come on, you can do it. You just have to put your mind to it' and, at worst, 'You're not trying hard enough.'

Julie-Anne Pickles, who has had M.E. for the past seven years has experienced a serious deterioration in her condition as a consequence of wrong diagnosis and ineffective medical response. She is now 90 per cent bedbound and has been diagnosed with depression, diabetes and Angina.

She told me:

"Cardiology phoned me with an appointment the other day and they told me to wear trainers because they want me running on a treadmill while on an ECG! I said: 'You do know I have M.E.?' They said they did but not to worry as I won't be running for more than five minutes! Running? I crawled on my hands and knees to the loo this morning!"

This idea among some of the medical professional that enforced exercise will help the condition of a M.E. belongs to a darker time in our history. A period when we thought that autistic children were a result of being born to cold and detached women or 'refrigerator mums' as they were heinously and immorally labelled.

Myth No. 11 - M.E. is not life-threatening

It is, although the true mortality rate of M.E. is mired in great confusion.

Recently, Labour MP George Howarth asked Paul Burstow, Minister of State for Care Services, to supply details of deaths to arise from M.E. Mr. Burstow replied that 'this information is not available and is not collected centrally'.

As with so many issues regarding our sick and disabled, the Coalition had this wrong, too.

According to figures obtained from the Office of National Statistics, there have been five deaths listed as the cause of M.E. in recent years.

For campaigners this is nothing less than a fudge of the true scale.

Figures are easy to massage with M.E. because it triggers so many other illnesses, such as heart disease. Given that many health professional still deny that M.E. is a physical condition, they are unable to list it as a cause of death even if it is.

Myth No. 12: M.E. is an excuse not to work

Despite recognition from the World Health Organisation in 1969 that M.E. is a neurological disorder, many Governments - including our present Coalition - have chosen to ignore this.

Consequently, M.E. sufferers are subject to a battery of controversial fit-to-work assessments. The anxiety and physical exertion this requires generally worsens the condition.

When the M.E. sufferer is unable to work, because of their illness, they are removed from disability benefit and are plunged into poverty.

So, for M.E. Awareness Week, let us be clear. M.E. is comparable to AIDS and cancer and all the other vicious and uncompromising diseases that savage the body and, in some extreme cases, kill it completely.

The fact that it is still so widely misunderstood is a modern day travesty that must be addressed without further delay. Or is it convenient that we still view M.E. as being 'all in the mind'?

I believe that we, as a nation, deserve to know the truth. Not only for those still battling the disease, but for those poor souls who have already been lost to it."

Raising Awareness

As most people out there with or who know someone with M.E/CFS or FM will know that this week is M.E awareness week. So, I have decided to do as many post's as I am able to focusing on the issue of raising awareness about this/these horrible diseases. A friend of mine shared this on facebook, which I soon made my status as it is such a perfect description. I would like to share it with you all, I believe that the person who originally wrote it was a lady by the name of Kate Stanforth and it is completely perfect:

A M.E sufferers everyday battle: 

"We all smile and say that we are fine as we are trying to be as normal as we can. A smile that we give isn't the reflection that we are facing inside, we are facing a huge battle every minute of every day. I can honestly tell you that M.E is real it's not all in our heads and that we aren't making it up. Honestly who would want to go through this everyday until we get better? I don't think anyone can 'imagine' having ME, or what it feels like. But this is how I feel every single day. Imagine a really bad hangover, then having to run a marathon, then coming down with the flu, all at the same time. On top of that, imagine someone is prodding needles into you constantly, spinning you around on a chair so you are extremely dizzy and nauseous and shining a bright torch in your eye so that light hurts. Then also, imagine everyone has a speaker phone, so even a whisper seems like shouting. Imagine spraining every muscle in your body and having to carry someone equivalent to your own weight who is clinging on to your legs all the time. Imagine having muscle spasms almost constantly uncontrollably which feels like torture as its so painful and tiring. Imagine someone speaking a foreign unknown language to you, and you have to concentrate REALLY hard to try work out what they're saying, then you forget it. Imagine having to sit in an ice bath for a long time, freezing cold, all the time. If you think you can't get any more tired, imagine having panic attacks on top of that, & really bad anxiety which literally drains any energy you've got left. Then, imagine staying like this, not knowing if/when you're going to get better, having to deal with this HUGE change of lifestyle. Imagine how tough and heartbreaking this illness can be. Imagine a lot of your support mechanisms breaking down, some friends move on. Imagine having to deal with this on a day to day basis, not knowing how you are even going to be hour by hour. And worse of all, imagine being told 'ME isn't real' and 'it's all in your head'. Even by medical professionals. This is what I want to change. I can't control my ME, the causes, the cure, but what everyone together CAN change is its understanding. We are all wishing for the day to arrive that we can carry on with our lives once more. However, things are not that easy as we are forced to sacrifice things to help us cope. For example, friends, exams, education and in some cases people become so isolated. In all honesty the best thing to do if someone you know has M.E is to stand by them and help them through the bad times. A small text means so much to us. Please raise awareness of this horrible illness. No one deserves to suffer in this way."

In my opinion, it deserves to be talked about, people should know about it, we should be heard, our pain should be considered and if it makes people uncomfortable then so what? If it makes other people even slightly as uncomfortable as it makes me on a daily basis maybe something will be done about it. Maybe more research will be conducted, maybe doctors will stop treating it as psychological and recommending therapy's such as CBT and GET. Maybe then the NICE guidelines could be re-written so that patients get the medication and care they need, instead of being abused and neglected by the medical profession. Maybe then all patients will get the help and support they need from the government (financial and otherwise) to ensure their rapid diagnosis and complete recovery. Maybe, just maybe.

As she said, I alone cannot make guidelines change, doctors treat me better, scientists undertake desperately needed research, the government decide to help those with varying illnesses. I cannot do all or any of that. But I can raise awareness and try to create understanding. I can show people that this illness is real, it is here and it could affect anyone. I can encourage people to understand to, know that they should help us, because, as sad as it is to think about, they could be next. But, if more is done, they might not have to be.

Anyway more on this another day, here are mine and Niamh's 366 photos for today:

Me sporting my newest medical based fashion accessory, joy!

And Niamh, "eating" strawberries and cream!

Night folks!

Wow, a positive experience with a doctor!!

Went to the doctors yesterday for a mediciation review and it actually went really well. I saw a lovely GP called Dr Singh, who is one of the two doctors I trust to treat anything relating to my M.E, sadly at my surgery we have two doctors that don't believe in M.E and a couple who firmly believe in the use of both CBT and GET (graded exercise therapy). So, you can see why I'm so careful about who i'll see.

As usual I went in with a list of other things too, it's so hard for me to get out to the surgery and I don't really like asking them to come to me unless it's really bad. So, walked in and then couldn't remember why I was originally there (medication review), I just kinda sat there and "errring" and "ummming" but lucky for me this GP is very understanding and looked on the computer to find out why I was there. We reviewed my meds, upped my pregablin, put my anti-nausea meds on repeat and re-prescribed me some more of my strongest painkillers. Then we went on to everything else on my list. He officially diagnosed me with Restless Leg Syndrome, which is something he had just suspected I had until now. He phoned up physiotherapy and asked where the hell my referral was and strangely enough they managed to fit me in on a cancellation (funny that) so I now have an appointment with them on Thursday morning. He referred me to an allergy clinic as well, which is helpful, I would really love to know for definite which things I am allergic to. We spoke about other things like my floppiness and occasional inability to hold my own head up, and he thinks I need a neck support and maybe some other wrist supports which would still allow me to use my crutches (the supports I have at the moment hold my wrists at funny angles and make it impossible to use walking aids). Typical with M.E that the cure for one problem causes others! So yeah, one very helpful appointment (something I rarely say in relation to anything medical!).

Niamh is still having colicy episodes but I moved her main meal to lunch time instead of tea time, started keeping a food diary and cut down the amount of diary she has. This seems to have helped, I managed to get hold of some gripe mixture from boots too, which is brilliant. Dr Singh is also going to see what he can do, I have an appointment with him for her for a week on Tuesday, and he's hoping if I keep on with the food diary until then we will be able to put her on a food elimination diet, which might show what is causing the episodes. Which is fantastic, it's nice to see someone wanting to help her. I usually get the standard "she'll grow out of it" which she probably will, but why should she have to suffer so much until then? To find the food that causes the problem and reduce it or cut it out for now, would result in her being in less pain, what parent wouldn't want that? It may even be that later on in life, as she grow up, she may no longer be sensitive to it any more and then I could re-introduce her to it!

Anyway that's about it! Hoping to post more often, having been writing down ideas for new material for a while and now I sort of have a brain I hope I can write more entries! Yayness!

Here are mine and Niamh's 366 photo's from yesterday, not a good day for me (as you can probably see).

And Niamh's, her first Tumble Tot's photograph (so sweet).

Hope you are all as well as possible!