Friday, 16 December 2011

Hope and Happiness Within the Storm....?

I've shared videos by Daisy before, which are always really inspiring and moving. She really knows how to straight talk, and how to talk from the heart in a way that can really reach people and show them the reality of the lives we lead, normally hidden away from view.

This one had quite a significant affect on me. I've really been struggling to cope emotionally recently. It's not really so much the disease that's been getting me down - though of course that's always a factor. It's more everything surrounding it. All the battles over healthcare, benefits, rights. All the prejudice, ignorance and hatred towards us. The way the system just doesn't 'fit' to our needs, and how much sicker that can end up making us. (Example, no GP home visits despite being bedbound) Hope can sometimes be extremely elusive when you're stuck in the middle of all that, at the same time as dealing with the daily pain of being seriously ill, and everything that brings.

Daisy, I'm sure, has as many bad days as me. I'm sure she has times where she just can't find the will to fight for hope. But like I have again and again during the course of my illness, she eventually fights her way back. In this video, created for the 'Britain in a Day' BBC project, she talks about finding a way to find happiness & beauty inside of this horrible, difficult bubble we live in. Coming from someone so young, (17) that almost makes an even stronger impact than it would from an adult. And she's right ... it really does come down to finding that 'do or die' attitude, to working our butts off to find what small happinesses and controls that we possibly can in our daily lives. And to not let all our possible futures cloud the present too much. I need to re-learn that ... and I sort of feel like this (and a couple of other things that have happened lately - see my last post, 'Can we Transform Pain & Despair into Beauty') are maybe a turning point to drag myself back up to a place of coping.

There can be beauty even in massive destruction!

So, here's Daisy's video. Share on, wherever and with whoever you can!!!

But living a life of regret would have kept me looking backwards, rather than forwards. Hope is forward leaning. It’s the ripple of energy that trusts there are resources enough to live into the future. I had to focus on what I could do, not what I could not.
~ Julie Neraas ~

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Friday, 2 December 2011

Can we Transform Pain and Despair into Beauty?

A few nights ago, my carer and I watched the movie 'Another Earth'. There's a scene in the movie that's stayed with me since. One of the main characters is telling a story to the other main character, who is in a great deal of pain in more ways than just the physical. (clip embedded below but I'll give a text version for those who can't view the video.)

The story is of a cosmonaut who is all alone in his space capsule, looking down at the curvature of the Earth, and is lost in that beautiful moment. But then a tap, tap, tap starts somewhere inside the capsule. He tries to stop it but cannot. Days go by, like torture, and he now knows that this repetitive sound would break him. Would drive him crazy before he will reach his destination.

She begins to tap on the table with a spoon, comparing her tapping to that inside the cosmonaut's capsule. The cosmonaut realised that his only chance is to fall in love with the sound. To, rather than let the repetitive tap be annoying, instead perceive it as music. So he shuts his eyes, goes into his imagination. Then he opens them, and he doesn't hear tapping anymore. He hears music! And throughout the rest of his journey, he floats through space in total peace and bliss!

I was watching this and wondering how much it could be applied to the things that pull us down, causing us pain, illness, & other struggles. Is it possible that we could make music and beauty from our pain? Could we, somehow, turn a switch in our brains that helps us to see things a different way?? Not a healing, because who can stop a storm in it's path? (excepting God) More ... to still be living with all the same pain we were only moments before - but to see it and feel it.... experience it differently, somehow?

Image of The Eye of a storm, as seen from space!

I don't yet know the answer ... but I suspect that I would rather like to find out! I haven't been in a good place physically or emotionally recently. I want to climb out of it but it just seems impossible right now. I wish I could find a way to make it feel.... just not quite this bad, you know? To find comfort and rest within the turmoil of a storm of pain. To give myself an eye in that storm to wait it out for however long it lasts? Right now I feel like I'm living in the middle of a huge despair tornado, so I really would love for this to be possible! I do believe the brain, especially when combined with hope, is an amazing thing, capable of so much more than we know. Maybe it is possible to find a way to change our perception or our perspective! After all ... if you're on the inside of the storm pictured above, it would seem ugly and violent in the extreme, not to mention completely unforgiving. From above, though, in space, it's breathtakingly beautiful!!!

Oooh! Didn't I just get all meta-physical on you!! ;)

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Tuesday, 25 October 2011

Scared of the Stigma of Being Mentally Ill...??

I'm sitting here thinking about Simon Wessely's much broadcast view that people with ME are simply scared of the stigma of being labelled as mentally ill. That, that is why we won't accept that our illness isn't psychological. I'm considering the oaths that doctors take at the beginnings of their career - and seeing clearly that the psychiatrists who have so terribly treated people with ME have broken almost every one of them in one shape or another. And I'm wondering how much it was those broken oaths that got us to the position where an ME patients' doctor can think that it's ok to neglect to reply to communications for weeks, even months at a time. Where the patients are responsible for their own biological research funded if they ever want to know what's really happening to their bodies, never mind get treatment for it. Where patients and their carer's constantly have to fight to get basic care needs met. Where promises are consistently broken by our medical teams. Worse, where the opinions of the few have become the feelings of the many, via the very clever media manipulations on the subject of M.E., that have been a constant in the UK for decades now, thus negatively affecting our treatment by insurance companies, welfare state, families and the wider society!

Dr's take an oath to do no harm - in fact, to do good; to protect the health of their patients; (interestingly, and perhaps key for us as ME patients, they are expected to make the care of their patients come first, above and beyond the needs of the Trust, NHS, or society!!); to keep their own professional knowledge up to date; to respect the dignity of patients, politely & considerately. To be open, honest, and to act with integrity; to never discriminate, and so much more. I just have to wonder why, how they would then think it ok to treat us the way they do, just because of their personal feelings, or because of what the NHS's stance is on that patient's specific diagnosis? How, in the case of my own doctor at least, can she genuinely not see that she is in fact being neglectful?? Because despite the fact that she has been making some efforts to improve things, the care I'm given still doesn't even barely reach that which a person this ill with most other diseases would receive.

How is it, in fact, that in our society, different diseases are somehow given different status. 'The Big C' of course is given the most respect, patients awarded as much care as humanly possible (in the majority of cases, at least - there are always sad exceptions) - M.E. is awarded the very special status of having the least respect, to my knowledge. It's victims are actually made the laughing stock of the medical community and the media. Illness just isn't simply illness anymore!

Professor Wessely has many times now made the case in the media that ME patients refuse to accept the psychiatric model of ME because we're scared of the stigma of mental illness. What a joke! I face stigma every day worse than that of someone with a mental illness, because as well as being viewed as just a label, treated with disrespect & ignorance, I am also treated as though my illness in fact doesn't even exist. (Which would not be true even if ME was a psychiatric disorder, since that by definition IS real!) My physical symptoms and disability are downplayed, ignored or disregarded, often completely disbelieved. Everything I say, do, believe, and am, is up for grabs for doctors to pounce upon as a reason why I am not as important as a patient with a real illness and why what I say about my illness, body & life can't be true. I've spent the last 15 years being neglected in a very real way, given little or no treatment, even where tests have proven some physical problem. I am not even given the majority of the tests and treatments recommended by international specialists for my very real illness. In essence I am just left to rot, along with everyone else with this diagnosis. And this isn't just my experience! Hundreds of thousands of ME patients in the UK have had this kind of experience, or much, much worse. Millions worldwide are little better off.

I truely believe that I would have a much, much easier time accepting a diagnosis of depression, borderline personality disorder, obsessive compulsive disorder, etc than I do dealing with what ME has done to me, to my life, and to the lives of my loved ones. I know many people still hold a stigma against things and people they don't understand and this makes life often really, really difficult for people with psychiatric disorders, and I don't want for a minute to downplay the agony many of those people face! - But I'm a nurse and I personally have no issue with people who are mentally ill - I find them in main very brave survivors! I refuse to stigmatise them for what is real illness. They're all human beings just like me and you - none of us perfect in any sense of the word. So the question remains: why should I be afraid to be part of that group? The truth is, I'm genuinely not any more scared of that than I would be of developing any other illness I might experience in my life! That's not to say that it wouldn't be scary and very hard indeed at times or that I wouldn't have to face stigma if I was in that position - of course it would be, and I would - but it's my opinion that it's harder in this current society to have a diagnosis of M.E. than it would be to have been diagnosed with the majority of mental illnesses, both because of the stigma, and because of the illness itself and the destruction it's wrought on my life.

What I do take issue with, what I am afraid of, is my reality of having a real, proveable, disabling physical illness (which cannot even begin to be explained by Wessely's definition of ME as an 'illness belief') be ignored and left untreated. Illness beliefs do not cause tachycardia's, palpitations, blood pressure imbalances, fainting, weird and wonderful blood test results, limbs that go literally blue when you are merely sitting, paralysis, temperature & sleep disorders, sensory overload, severe chronic pain, body clock reversal, and all the other things I, and many other severe ME patients have going on. (I personally have a scary list of symptoms several pages long, which probably makes me look like I'm completely mad when I hand it to a doctor, lol!)

Photo of a woman sick & in pain on a bed, by ValetheKid - view their flickr feed here
photo by ValetheKid via PhotoRee

Illness beliefs don't cause people to become literally bedbound, struggling even to go to the bathroom a couple of times a day - never mind to only be physically able to have a shower once a week!!! (If you've never tried it, don't bother - it sucks as much as you might think it would, and worse!!) They wouldn't cause tens of thousands of people, in this country alone, to lose their careers, social lives, personal hygiene, healthy bank balances, their homes, friends, and sometimes even their families. They sure don't make you choose to endure the degradation & humiliation that comes with needing personal care such as help having a bath, or someone having to cut your food up before meals, or even to have their carer's need to feed it to them like a young child!! In addition, I take issue with the fact that these doctors, treating us so neglectfully, or downright mistreating us, all swore an oath to do no harm!!! That is the most important vow a doctor takes, yet the one most ignored when treating patients with Myalgic Encephalomyelitis!!

It's a very, very rare psychiatric illness that could cause such enforced human misery in a person and such a terrible quality of life for it's sufferers - and moreso, I simply don't believe that an ilness belief could cause that suffering on the scale of what we are seeing with cases of Severe ME, where 25% of people with this diagnosis are housebound or bedbound, often for years or decades at a time!! What's more, it makes no sense that those people all would be struck down by an illness which follows such an extremely similar pattern (usually despite a previous lack of knowledge about ME on the part of the patient), and in fact has often occured in clusters! To my mind, there are so many obvious points that make it absolutely inconcievable that this illness could be concocted in our minds somehow. This many people (hundred's of thousands in the UK alone, of all ages!!) would not choose to live in such conditions, if they had any choice in the matter - especially people who in previous lives pushed themselves regularly to their limits, fully enjoying their life, freedom, & health.

So no, Professor Wessely, I am not afraid to accept the stigma of having a mental illness. I'm simply afraid (not to mention disgusted) that the environment you helped to create in this country (and beyond!) is neglecting & mistreating people on such a massive scale. I'm angry that one group of doctors, headed by one man has changed public perception to see only their personal opinions, despite the fact that they are not backed up by international science/research. I'm angry that the majority of journalists reporting on M.E. seem only interested in catchy headlines, not truth. And I'm angry that I am one of those forgotten, abandoned, invisible people & that I cannot even enjoy the most basic of beauties, such as the sun, trapped in these four walls with dimmed light, as I am. I'm frustrated that for 15 years, I've had so little real medical support that I now have to do all the research into my condition myself, despite the consequences for my health, because there is no doctor specialised enough, or willing enough, in my area to do it for me - few, in fact, in the whole of the UK. And quite honestly, I'm terribly afraid that these situations & prejudices will not soon change for us, no matter how hard we fight them, as they are deeply ingrained in the public mind, thanks to your media tinkerings! I just wish you and those who agree with you would try to understand that unless you have walked a mile in our shoes, (or in my case, simply stand up, still, for a few minutes - that'd be plenty to show you how bad it gets!!) then you can't possibly understand just how real and destructive this disease really is - though truthfully, I wouldn't wish even those few minutes of this disease on even you, Professor Wessely - No-one deserves this!!!!

Don't judge me - it only defines who you are because you can't really even see me past your own prejudice

If you're reading this and all you know about Myalgic Encephalomyelitis is what you've read in the media, please find out more from reliable sources! Until you've really educated yourself, you can't take the word of a journalist or even a doctor as truth! So don't judge us based on what you read in the papers - after all, you never know when you might find yourself walking in our shoes too, and I'm certain that if you did contract M.E., you wouldn't want to be judged like that either!!

There are many links in my sidebar to great sites & books about M.E. that will help you to understand what it really is, and how it affects the people living with it. I particularly recommend the book Lost Voices which tells the story of many ME sufferers and their families in a really easy to read format. There are also many wonderful people in the ME community who would be willing to talk with you. I know I would love to help you really understand! Once you've read up, then speak out for us too. Educate your friends and family! It's only by us all working together, sick & well alike, to end this stigma and medical ignorance, that things can ever change! Thank you so much!! :)

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Saturday, 15 October 2011

The Law of Sod!

Somehow it came as no surprise to me when I was being hooked up for my Tilt Table Test on Friday, that the computer decided it wasn't going to play nice, and the test had to be cancelled! I seem to attract this kind of incident on a regular basis, for some reason or another, lol!!!

The Life Cycle According to Sod's Law

So, the upshot is that I have to go back to the hospital again, at the end of November, meaning another appointment to deal with in amongst all the others I have between now and Christmas. Blah. I feel kind of upset about it to be honest - but what can you do?? Crap happens and you just have to deal with it when it does!

The rest of the tests went ok - had the echo (boobs flapping in the wind wasn't my idea of fun any more than the tilt table test is going to be, but ya gotta do what ya gotta do) and they fitted me for the 24 hour holter test, which was fine except my silly sensitive skin reacted to the electrodes and by the time I removed them today, I was covered in blisters and welts. Nice. :p

The going out of it all was the rough part. Seems like every appointment I go to, it's getting harder and harder to maintain the energy I need, and taking more time to recover afterwards. It's nothing I didn't expect but that doesn't make it nice to live through. This one was especially hard though. I was picked up by ambulance and rode to the hospital (and into the clinic) on a stretcher, which was great for obvious reasons. During the appointment however they had me sitting up for quite some time while they tried to fix the equipment. I was too wussy to object and they had chucked Anna out of the room (it's their policy not to allow visitors in the room while they do Tilt Table Tests just in case something goes wrong and they have to resuscitate you.) so she couldn't advocate for me. (That turned out to be quite a problem because when my neuro symptoms kicked in because I was sitting and getting exhausted, I kept forgetting words and my train of thought. Had Anna been in the room she could have communicated for me. I think when I go back I need to insist on her being in the room for that reason because I know when I am standing on the table it's only going to get more and more difficult to communicate!!!) Anyway, I was just about coping and I did eventually ask to lie down.

Unfortunately though, the clinic appeared not to know what to do with me once the apppointment was finished. A porter took me to the ambulance pick up station on a wheelchair and left me there. Apparently what should have happened is I should have stayed at the clinic on a stretcher/bed and waited for the ambulance guys to come back and pick me up. Instead what happened was I was left there, sitting up for over an hour before the ambulance finally arrived. By that point I could barely talk, had had to put my eye mask on because I couldn't deal with the light anymore, even with my shades on (you have NO idea how vulnerable and how embarrassing that is to do in public!!!), I was in so much pain I was near tears (VERY unusual for me), I was shaking like a leaf, and they had to all but lift me onto the stretcher to get me into the ambulance!!

All in all, a pretty horrible experience and not one I want to repeat! I'm going to have to get better at sticking up for my own needs and not letting anyone put me in a position I can't physically handle! I think before I go back in November, I'm going to ask Anna to call them and arrange in advance that I stay at the clinic until the ambulance comes for me with a stretcher, and insist nicely that she be allowed to be with me in the room while I have the test, to communicate for me. I know I'm getting better at meeting my own needs, but I still really struggle with asking other people too as well. I guess that old adage about Doctor's and Nurse's making the worst patients must be true, lol!

Please note : This post is an update to my previous post, Terrifying Tilt Table Test Tomorrow!

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Thursday, 13 October 2011

Terrifying Tilt Table Test Tomorrow!

Like my alliteration? ;) Lol - I know, I know - so sad! Heh. Ok, on to the serious stuff.......

I'm really getting nervous about the Tilt Table Test tomorrow!!!! It's kind of ironic really that I'm afraid it will be a horrible, painful, exhausting process and that my results will be strongly indicative of POTS ; but equally, scared that all the results will be perfectly normal and they'll say I'm absolutely fine!

It's the default thought pattern I go to with things like this. From what I've read on other blogs in the ME & Dysautonomia community, it seems to be fairly normal for us to feel that way - and it makes sense if you think about it. Our medical histories are splattered with complex symptomology, doctors who didn't understand or believe us, and tests with normal or borderline results. (In main because they generally don't give us the right tests, particularly in the UK where doctors are actually taught not to order medical tests for their ME patients!!) So our default feelings about such things are fear and trepidation that once again we won't be believed - no matter how much we know we are extremely ill and really need help. In this specific case, I am as certain as I can be that I have POTS, because a) my symptoms so obviously match up, and b) the poor man's tilt table test showed very obvious results that could only really mean POTS so far as I'm aware. But I still don't trust the hands of doctors, after so many years of facing ignorance and prejudice. And in all honesty, I can't say I blame me!!

Can I just hide instead of going, tomorrow???

Can I hide instead of going to my Tilt Table Test tomorrow??? Image by Annemarie Vriends
photo by Annemarie Vriends via PhotoRee

I'm so worried that not only will this tilt table be a massive physical challenge, but also that it will trigger my abuse issues while it's at it!! Being so out of control, strapped to a table, is not my idea of fun, put it that way! (Though I believe my arms will be free, thank god!!! Being completely pinned down and totally vulnerable would be too much!) I'm also so relieved that Anna will be there with me - I don't think I could handle it alone, and I hope she knows how grateful I am that she's taking a day off uni, where she's only just begun her PhD two weeks ago! Another plus is that we were able to organise an ambulance transport for tomorrow, so hopefully that will make things easier.

Tilt Table Test - not my idea of fun! - Oh the drama!!

Sigh. Anyway - just a teeny tiny post this time (well, by my rambling standards anyway, lol!!) as I'm not having a great week. I had to come off the salt tablets because the side affects were just getting worse and worse, and well, I guess they were helping to some extent, because I've been pretty much floored for several days now. I'm going to try to get some advise about it when I'm at the clinic tomorrow, though I'm not scheduled for an actual consultation with any of the doctors while I'm there - at least, not to my knowledge.

I hope you're all doing ok, and looking after yourselves. I know so many of us have been affected over the last couple of weeks both by the death of Amberlin Wu, who was a big part of this community and friend to many of my friends, though I didn't know her very well myself - and by everything going on at the Whittemore Peterson Institute. It's really been a horrible time, and I'm thinking of you all. x ♡ x

Update : 16th Oct
I didn't have the tilt table test in the end, because their computer decided it wasn't going to play nice and wouldn't work. I posted an update here : The Law of Sod!

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Sunday, 2 October 2011

Challenges Ahead!!

Yikes!!! A whole month since my last blog! No apologies - that would be too much of a cliché, ha! Just an explanation ....! The gynaecology appointment a month ago really took it out of me, and between the affects of that, and the need to rest up because I had the cardiology appointment coming up too, I had little choice but to stay more or less offline. I've now had my first cardio appointment, which went ok, I think - but again, the after affects haven't been very nice. My eyes / light intolerance have stepped up a notch and I'm having to wear a mask for at least several hours a day, and the rest of the time I spend in dimmed lighting. My pain levels are pretty bad too, and now not only do my feet go grey and blue when I'm upright, but my legs go grey right up to half way up my thigh!! Kind of scary to be honest. I've really wanted to update you guys on how things are going, so I'm basically going to post the note I posted on Facebook after my appointment, with some additions I've been working on a little at a time ever since. Sorry, no pretty pictures today, and apologies in advance for all the long sentences! I'm just too tired to make it read more easily.

Ok, so - here's the story....

I saw the registrar (the consultant was really ill with a virus he didn't want to give me, so he just popped in to intro himself then left it to the reg to do the work, lol. I thought that was quite nice of him to be honest. Both the doctors and the nurse who sat in were really lovely, so that helped an awful lot with my nerves! I was so worried that my M.E. diagnosis would cause them to not hear anything I had to say without prejudice. I can't be sure, but I think maybe it was ok - the registrar said that he had a friend with M.E. so maybe that went in my favour!?!

Unfortunately the clinic didn't give me somewhere to lie down when I got there, and I was dumped in a busy waiting room with noise and lights and craziness. Not a good start. I was sitting for so long that by the time they took my blood pressure and pulse, they'd sort of plateaued out and weren't too bad (I don't know about others with Orthostatic Intolerance, but after a couple of hours my blood pressure seems to adapt, though the blood pooling is often still there) and there isn't time in one short appointment to keep me standing for longer than a couple of minutes to take readings. He seemed to take my own recordings at face value though. (he could easily have decided i was either mad or a faker, so...!)

The outcome of the appointment was that he's ordering a tilt table test (Which I'm honestly seriously scared of even though I know it has to be done. It's not just the physical strain of it, but also, I think it's going to be quite triggering being strapped to a table with little or no control - brings up some abuse issues. Blah!) and a 24 hour holter monitoring. Not sure when those will be done - but he's not left me with nothing in the meantime. He's prescribed insane amounts of sodium chloride (Sustained release tablets, 600mg, TWO tablets FOUR x a day - yikes! - Apart from anything else, how on earth will I remember that/fit it in??!!!?? Lol, I can barely remember to take meds 3 times a day, and that's with multiple alarms set on my phone, without which I'd be screwed!!) and said to continue drinking a minimum of 3L of water per day. It's a really high dose of salt that they've prescribed, but because I know it can be tough on your body, I decided to stagger it, starting on a lower dose and gradually increasing. I'm relieved they wanted to start some treatment straight away though, (and I know salt is basically the first line treatment in many clinics, so I was prepared for that) because knowing the NHS it may take a while to get the tilt table sorted. I suppose there's even a chance I could have improved a fair bit by the time I get it. I guess that would be a little annoying because if the tilt table test shows nothing interesting, can they even diagnose me??? But then, that would mean the treatment is working, and I guess that's the most important thing anyway, right? Hey - a girl can hope! ;)

The aftermath hasn't been pleasant, as I said ... and I think it's been worse than after my gynae appointment (not surprising considering a) I was looked after better at that clinic, put somewhere quiet and dark to lie down while I was waiting, and b) I had been still recovering from the first appointment!) but I do feel relieved to have finally seen a cardiologist - sheesh, it's taken long enough!!!!!!!! (I've only been having these symptoms in varying severities for 15 years HA!)

The next few months are going to continue to be challenging, to say the least. I have another gynae appointment this month. My Disability Living Allowance re-assessment forms have arrived, sigh, so I'm going to have to have appointments with an advocate to fill in the forms - and unfortunately the one I normally see has just gone onto maternity leave so I have to be re-referred and have a new advocate assigned! (Mind you, I'm lucky the department is there at all, because last time I saw my advocate, their budget had been cut significantly and she was concerned they couldn't last much longer!) I'm pretty scared about the assessment, because it's hard enough to get through it even without the major shake up going on with the benefits system right now - huge amounts of people are being denied benefits on reassessment, and if I get the wrong assessor, or medic, I could be seriously stuffed!! I have zero trust in the system now, let alone the people actually working within it!

Then we're still fighting social services to try to get direct payments (to pay for Anna to care for me) - they're on the verge of making the crappy decision that I don't need Anna in particular to care for me, and because she lives in the same house, they will only give me money to get an agency carer - which would cause me more harm than good! My GP isn't helping my cause - my social worker has repeatedly contacted the surgery asking for information from her on my condition and how it affects me, but she hasn't bothered to reply!! (And this on top of the fact that she still hasn't organised the vitamin d regime or any of the countless other outstanding things - and we can't even get through to the local patient advocacy office on the phone!) Then of course there'll be the tilt table test at some point, and a cardio appointment on the 20th December, which basically sucks because Christmas is going to be a write off for me after that. Last year I barely made it through a few hours with family and the after affects were awful! An appointment right before that .... I'm not even sure if I'll cope with dinner with my family.


I feel so overwhelmed by all this happening in such a short space of time, and I have no idea right now how I'm going to cope with it all. But really, I have no choice but to cope, so I'm just trying to take it literally one day at a time. I'll try to keep posting as and when I can - though that's going to be further complicated because I have to send my laptop back to the company I bought it from because it's all but died. I should be able to borrow my mum's sometimes but it's just that extra step that'll make it harder to get online. I just hope it can be sorted swiftly!!

I'd love it if any of you guys who haven't yet joined me on facebook would connect with me there too - that way I can keep in touch a little easier - just click the link on the right sidebar & send me a friend request with a note letting me know you came in through my blog. :)

I hope you're all doing ok - I've missed spending time with you all! xxx

Reader question about postural orthostatic tachycardia syndrome treatments

Reader Question for People With POTS :

Which treatments have worked for you,
and which haven't??

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Tuesday, 30 August 2011

Professor Hooper's Response to The Observer's Article About Professor Wessely's Allegations of Death Threats

Professor Malcolm Hooper has submitted an article to the Observer in response to the article by Robin McKie "Chronic Fatigue Syndrome Researchers Face Death Threats From Militants", published on Sunday the 21st of August 2011. He has given permission for this article to be made public, and I decided to share it here, as what he has to say is so important - and he has responded so concisely to the most recent rush of abuse against ME patients in the UK. (Please note, the article posted below is the extended article. Professor Hooper first wrote a shorter letter to the Observer, at the request of the readers editor at the Observer, which he was originally told would be published - but then they decided not to do so. You can read this letter over on the NICEGuidelines Blog. :)

I haven't blogged about all this stuff going on in the media recently, basically because I just haven't had the energy to do so. I wish I could say that I haven't let it affect me negatively, but the truth is, when this attention in the media is so constant and so well targeted, and so cruel, it's really hard not to let it get to you. I'm personally feeling just really worn out by it all, emotionally. I really don't understand why these so called journalists are only giving one side of the story, and seem to do absolutely no research whatsoever before publishing these articles. It seems like they are just 100% buying into the lies they are being fed, purely because it makes good sensational headlines.

I hope one day that ME patients will receive a formal apology from the NHS, and the media, for the treatment we've had to endure for so many decades now ..... But I'm not holding my breath!!


Professor Hooper’s response to the Observer article about Professor Wessely’s allegations of death threats:
Professor Hooper | Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD

25th August 2011

No right-minded person could condone any campaign of vilification against scientists (“Chronic fatigue syndrome researchers face death threats from militants”; The Observer, Sunday 21st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years. 

No matter what the degree of provocation, it is indefensible to liken people with myalgic encephalomyelitis (ME) to the Animal Liberation Front extremists. This will create a further tidal wave of loathing against them. It is an inexcusable attack on the whole ME community, not just on those few people who may have behaved irrationally.  It might be thought that, of all people, psychiatrists would know how to recognise and deal with unbalanced behaviour instead of exploiting it.

Wessely says he is concerned that such behaviour is putting off researchers but it is he who is putting them off by his endless purveying of so much negative publicity about people with ME. He perpetuates the dismissive, often contemptuous, attitude of many healthcare professionals toward those with the disease.

The problem is that although these scientists claim to be studying patients with ME, they are studying people with chronic “fatigue” (ie. chronic tiredness) but then claiming that their results apply to those with ME; this has resulted in a lack of appropriate NHS medical services for those with ME and in incalculable harm and distress to patients and their desperate families. 

Even though the World Health Organisation has classified ME as a neurological disorder since 1969, the Wessely School teaches that it is not a neurological but a psychosocial (behavioural) disorder.

There are about 250,000 ME patients in the UK.  By comparison, there are about 83,000 people in the UK suffering from multiple sclerosis, yet the far larger numbers of ME patients coping with an equally serious neurological disorder are not only denied both medical and social support but are ridiculed, mocked, disbelieved, derided and abused by those charged with their medical and social care. 

Dr John Greensmith noted in a letter to The Scotsman (when Wessely was making the same claims of vilification by patients seven years ago): It is deplorable if he has been so treated, no matter how controversial his views.  It is instructive, however, to examine how Professor Wessely has raised passions to this level of fervour by, perhaps, more than any other single individual, being responsible for making the area as controversial as it is”.

There has been a constant drip-feed of denigration of patients with ME and a dismissal of ME as an organic disease over the last quarter of a century by Professors Simon Wessely, Michael Sharpe and Peter White; they all belong to a group dominated by psychiatrists (named in Hansard in December 1998 as the “Wessely School”).

Most of them work for the medical and permanent health insurance industry.  The industry is panicking because it stands to lose millions if it has to pay out for a severe life-long physical illness whose worldwide incidence appears to be escalating out of control.  In 1994, Wessely went on record about the industry’s concerns: “By 1990 insurance and disability claims (for ME) were doubling every year”. There is plentiful written evidence that the Wessely School advise their insurance industry paymasters that ME is a “functional” (ie. non-organic) disorder, which is to the financial advantage of the industry, as functional disorders are excluded from cover.

Wessely and his colleagues are also advisors on ME to Government Departments of State (and Wessely’s wife is Chair of the Royal College of General Practitioners); as a result, people with ME are specifically targeted by the Department for Work and Pensions, making it difficult for them to claim State benefits, with the financial support necessary for basic survival being ruthlessly withdrawn. Many very sick and destitute ME patients have had no alternative but to commit suicide, rates of which in ME are known to be higher than average (sadly, a fact does little to mitigate the charge that they were “mental malingerers”).

The Wessely School’s blatant financial conflict of interest has been roundly condemned by a group of senior parliamentarians including the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology; a member of the Home Affairs Select Committee; a Minister of State for the Environment; a former President of the Royal College of Physicians; the Deputy Speaker of the House of Lords, and a former Health Minister and Honorary Fellow of the Royal College of Physicians.

The Wessely School’s endless assertions that ME does not exist except as an aberrant illness belief by those who are seeking secondary gain (an assertion for which there is not a shred of evidence, as the many doctors, nurses, medical scientists, lawyers, teachers, and others who have lost their valued careers, salaries, homes, marriages and even families because of ME will readily confirm) has created a climate of disgust for patients with ME, giving rise to such banner headlines as “GPs despise the ME generation” published in the medical trade magazine “GP Medicine”. Since the 1980s, they have made a point of mocking and denigrating sufferers from ME in a way they would not dare do about patients with multiple sclerosis or other neurological disorders and this has been fed to and reflected in the national media.

The Wessely School insist that they can cure ME by “cognitive restructuring” (ie. brain-washing patients into believing that they do not suffer from an organic illness but from wrong illness beliefs) and by forcing them to ignore their symptoms and engage in a programme of incremental exercise  (one MP suffering from ME collapsed and died leaving the House of Commons gym, having been told to exercise back to fitness).

What is ME?

ME is a chronic, acquired neuroimmune disorder that affects every bodily system, not only the neurological and immune systems but also the endocrine, cardiovascular and respiratory systems as well as the musculoskeletal and gastrointestinal systems.

There is evidence of widespread, chronic inflammation and of serious problems with the blood vessels in both adults and children.

The muscles of people with ME have been shown to take much longer to recover from minimal exercise.  Direct impairments in oxygen delivery have been clearly demonstrated. Cardiac output in ME patients has been shown to barely meet metabolic demand, so it is no wonder that patients feel – and are – extremely ill, with profound incapacity and nausea; many patients cannot stand unsupported and often have difficulty maintaining their balance. 

There are more abnormal genes in ME than in cancer: there is compelling evidence linking ME with exposure to environmental toxins and chemical warfare agents. Gene expression research has demonstrated 16 genes as having an expression profile associated with ME.  Genes affecting the immune system and the functioning of muscles have been shown to be abnormal. A neuronal component was identified that is associated with hypomyelination of the central nervous system. The researchers specifically pointed out the association of organophosphates (which include household pesticides) and chemical warfare agents with the damaged genes.

Notably, after one of the researchers who discovered these acquired (not inherited) gene abnormalities in ME, Dr Jonathan Kerr, publicly criticised the psychiatrists who control funding for ME research at the Medical Research Council, he lost his tenure and his contract was not renewed.

He was not hounded out of his research by patients with ME, but by those whose mission seemed to be to ensure that his voice was silenced, leaving the way open for more dismissal and disparagement of those battling a devastating disease.

At a press briefing in the United States on 3rd November 2006, ME was described by Anthony Komaroff, Professor of Medicine at Harvard and a world-renowned ME expert as “this terrible illness”.

People die from ME and UK coroners have recorded it as a cause of death. 

Evidence from autopsies of ME patients is chilling: there is evidence of oedema, inflammation in 75% of the spinal cord, damaged arteries, congestion of the liver and spleen, ischaemia of the bowel, rhabdomyolysis (the breakdown of muscle fibres with release of muscle fibre contents into the circulation, some of which are toxic to the kidney), and degeneration of the brain. The Medical Director of one US support foundation commented: Every time you look closely at someone with this disease, you see immense suffering.  There appears to be no limit as to the human toll that this disease is capable of exerting on patients”. 

However, when in 2002 the UK Chief Medical Officer publicly stated that ME should be recognised alongside disorders such as multiple sclerosis and motor neurone disease, the British Medical Journal quoted Professor Michael Sharpe responding by saying that just because the CMO says something, it doesn’t mean that doctors will pay any attention.

The Wessely School’s published views about people with ME

Since about 1987 the Wessely School have consistently rejected the biomedical evidence of serious organic pathology in ME.

In 1990 Wessely asserted that ME exists “only because well-meaning doctors have not learnt to deal effectively with suggestible patients”.

That same year he wrote in a medical textbook:  “The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”.

In 1991, he cited medical comments made between 1880 and 1908 on patients with neurasthenia, with the clear implication that such descriptions apply equally well to today’s ME patients: “always ailing, seldom ill; a useless, noxious element of society; purely mental cases; laziness, weakness of mind and supersensitiveness characterises them all; the terror of the busy physician”.

In 1992 the Wessely School directed that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms; that same year, Wessely went on record about his intention to “eradicate” ME.

In 1994 ME was described by Wessely as merely “a belief” and a “myth” (“I will argue that ME is simply a belief, the belief that one has an illness called ME……I will argue that this line here (pointing to a slide)represents…the line between real and unreal illness”) and he openly named and mocked a seriously ill ME patient in a lecture; that person is now dead. 

In 1996, under the guise of a Report from the Joint Royal Colleges of Physicians, Psychiatrists and General Practitioners, the Wessely School recommended that no investigations should be performed to confirm the diagnosis.  (This advice to doctors was re-stated in the 2007 NICE Clinical Guideline on “CFS/ME” in which the Wessely School were instrumental.  This means that investigations such as a comprehensive immune profile cannot be ordered in the UK  -- even though one specific immune test always corresponds to disease severity in ME patients -- nor can patients be sent for fMRI scans that show clear evidence of hypoperfusion in the brain, nor can doctors request SPECT scans that show reduced blood flow through the brain stem in ME patients in a particular pattern that to date has not been found in any other disease process).

In 1997 Professor Michael Sharpe referred to ME as a “pseudo-disease diagnosis”.

In 1999 Sharpe said about ME patients: “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service”.

Between February and April 2002 Wessely was involved with a poll of “non-diseases” carried out amongst doctors by the British Medical Journal: along with big ears and freckles, the poll found ME to be a non-disease that is best left medically untreated.  As a result, patients with ME were struck off their GP’s list, one extremely sick person being told scathingly “This practice does not treat non-existent diseases”.

For those who want or need to find out about the published organic pathology in ME, a summary of the biomedical abnormalities can found in Section 2 of “Magical Medicine: How to Make a Disease Disappear” (http:/// and those who want a fully referenced account of what the Wessely School and the insurance industry are really up to can read the rest of the 442 page report.

The Wessely School’s dismissal and rejection of the biomedical evidence on ME has continued unabated. It was not the fact that UK scientists such as Professor Myra McClure failed to find evidence of the retrovirus XMRV found in ME patients by US researchers that caused such an eruption of anger within the ME community: it was the utterly triumphant and contemptuous comments of certain of those scientists whose studies failed to replicate the original XMRV study published in Science (2009:326:585-589) that so incensed some people with ME and the medical scientists and clinicians who are striving to help them.

Patients with ME know what Wessely really thinks about them, as his published views leave no room for doubt or conjecture (for illustrations of his descriptions of ME/CFS patients, see “Quotable Quotes about ME/CFS”:

The views of the Wessely School about ME have repeatedly been shown by medical scientists of international repute to be completely wrong: the recently published International Consensus Criteria for ME produced by 26 world experts from 13 countries points to widespread inflammation and multisystemic neuropathology, consistent with the WHO classification of ME as a neurological disorder, of which the cardinal symptom is post-exertional nalaise. The authors state: “Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome, is a complex disease involving profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying  pathophysiology  produces measureable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology.”

What is astonishing is that no NHS clinician has the autonomy to regard ME as a somatoform disorder because the WHO classifies it as a neurological disorder; the Department of Health has confirmed in writing that: “The ICD-10 is an NHS Information Standard….The NHS has a long history of using the ICD.  There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation (emphasis added)….Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”.   

Not only the Wessely School themselves but also many GPs and NHS neurologists are in breach of that mandate:  in 2010, 84% of neurologists questioned stated that they do not believe that ME exists as a neurological condition.

Who is abusing whom?

For the Wessely School to ignore the scientific evidence that ME is a biomedical disorder is abusive of patients with the disorder; for them to advise the DWP decision-makers and to train ATOS examiners that ME is a mental disorder is abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious and significant medical disorder with reproducible multiple systemic abnormalities is abusive.

This widespread abuse of ME patients continues unabated in the UK.

Robin McKie implies that it is these scientists themselves who are being abused by the very patients they are trying to help.  If this is true – and if it is corroborated by the police and is not another public attack on people with ME so often used by the Wessely School in the past when yet more research appears that vitiates their own beliefs -- it is an entirely unacceptable state of affairs and must be condemned without reservation.

However, responsible journalists should exercise the requisite journalistic neutrality when reporting a “story” and report the whole issue, not just regurgitate uncritically what they are fed by those with well-established vested interests. McKie would do well to redress the balance by reporting the presentation by Catriona Courtier at the Royal Society of Medicine meeting in the “Medicine and me” series on 11th July 2009 in which she emphasised the scandalous situation faced by ME patients in the UK:

“Over the twenty years I have had this illness, what has really bedevilled the situation of patients with ME has been the belief, which has been persistently promulgated, that we are suffering, not from a physical illness but from an illness belief. This is at the root of all the problems we experience: the lack of resources, the hostility and disbelief from some doctors, the ignorance and disinterest in our symptoms, the ineffective treatments, the harmful treatments and in the very worst cases, the imposition of psychiatric treatment against the patient's wishes.

“Those who promulgate the view that ME is an illness belief have undermined the mutual trust and respect that should exist between doctor and patient. They have done a great disservice to both patients and to the medical profession.

“I began by describing the severely affected as the weakest among us. In some ways they are the strongest… to live for many years with an illness like ME is a huge feat of human endurance and courage but is seldom recognised as such. People with ME at all levels deserve to be respected. They deserve to be listened to”.

That patients with ME continue to be neither listened to, appropriately investigated nor correctly cared for but abused and effectively abandoned is believed by many to be the shameful legacy of the Wessely School.

Notes for Editors

1.      All the above statements can be substantiated by literature references.
2.      Much other information has been omitted purely for reasons of space; there are many harrowing stories, as documented by Natalie Boulton in her book “Lost Voices” and her DVD “Voices from the Shadows” that is to be shown at an international film festival in the autumn.

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Monday, 29 August 2011

If That's What it's Like to be 'Normal', I Want it!!!

Image of Liverpool Clean up after the riots, taken by Peter Carr | Little Time Machine - View his website here.
I can't believe it's taken me almost 3 weeks to update you guys on my appointment at the Women's Hospital! Yikes! I've been basically floored (well, more accurately, 'bedded' - but since that sounds rather um, rude, I'll move swiftly along....! Smilie winking) by having to go out. As those of you who are friends with me on Facebook may know, my appointment fell on the day after the first night of (ridiculous & pointless!!) rioting in Liverpool. The areas all around the hospital, and the area I live were the worst affected in the whole city. Overnight, we were concerned that we may not be able to safely reach the hospital, but by morning, the streets were cleared, opened, and settled again, (though there was lots of broken glass, fire engines, and many cars had obviously been vandalised or set fire to) and we managed to get to the hospital with no problems at all. Phew. (Can I just say, I was really proud of the way our city reacted to the riots - there was a citizen organised clean up operation set up on facebook as the violence broke out on the first night, and hundreds of people arrived first thing in the morning to clean up the streets! There's a real sense of community in Liverpool, which most people from outside our city would be surprised by, given our unfair reputation!)

My Orthostatic Intolerance (specifics as yet undiagnosed, but almost certainly POTS) poses quite a problem nowadays when I have to leave my bed for any length of time, because standing and sitting cause my blood pressure and pulse to rise rapidly to fairly dangerous levels. The hospital is only a few minutes away by car, but factoring in the sitting I would need to do at the hospital, the only safe way to get there is to lie down in the back seat of the car. (We were unable to get an ambulance, because my GP didn't send the hospital the information they needed until the very last minute, despite several attempts by the hospital to contact her, meaning that the appointment wasn't confirmed until the Friday, leaving no time to arrange it!! Thankfully, my dad agreed to drive me there and back, despite him having to also take my mum to and from the Royal for her Velcade treatment on the same day!) It doesn't feel especially safe being in a car with no seatbelt, and I get car sick ... but I'm left with little choice in the matter.

The staff at the hospital were all really lovely, & amazingly even found a spare room/exam table for me to lie on during the hour I was waiting to be seen. Uncomfortable, but at least my pulse stayed relatively stable, and it was much quieter than it was in the large waiting room. They even turned the light off for me. (Light intolerance and the resulting pain in my eyes was definitely the worst thing about the trip, actually, which surprised me somewhat! I had sunglasses once I got there, and I wore an eyemask in the car, but honestly I felt very embarrased about it all!) I also find that the effort of getting ready to go out, being driven to the hospital, wheeled to the unit in my chair, dealing with all the light & noise & sensory overload ... then lying for an hour on the hard exam bed, did really slow down my cognitive function very significantly, and I was finding it really hard to think and communicate by the time my appointment actually came around. I think my speech was quite slow and slurred too, which was embarrassing and frustrating. I'm just glad Anna was there to communicate for me when my own words failed!!

I saw the clinical nurse specialist, who was very nice and very respectful of my ME & the issues it causes, though it seemed like she was rather surprised at how badly I was affected. (I'm sure she doesn't get many patients who can't handle light, lol) She took a history, did an exam etc, then I had some bloods taken. I'll have to go back once the results come in - it probably won't be till October, which is ok by me because I have the Cardiology appointment in September, and I'm not sure I could handle two appointments in one month!. The Nurse Specialist thinks it's more than likely that my symptoms are being caused by the PCOS being totally out of control, but there's a chance other things are going on. (I have an increased risk of various cancers, for instance)

I would normally have had to have a scan at a separate appointment, but I was brave enough to ask if there was any chance at all that I might be able to have one that day. She rang round to the xray dept on the off chance, and amazingly, they said 'yes, come straight round and we'll fit you in'!! Apparently that literally never happens! I think they had, had some cancellations because of the riots. (So at least that stupid situation had SOME use then! Lol!) I was so relieved they were able and willing to fit me in, because even though it made that particular appointment longer, it means one less outing over the next few weeks, which will make a massive difference to the potential for short or long-term relapse caused by all this activity!!! One of the big concerns, and reasons why I had to get a scan, was that I may have developed Endometriosis, which is always a possibility because of my PCOS, but the scan didn't show any obvious signs of that according to the radiologist doing the scan, so that's one huge weight off my mind!

Picture of a rickety scary looking bridge in the Philippines, by Raelene Gutierrez - view her flickr stream here!
However, kind of scarily for someone in my situation, there's a chance I may have to have a Hysteroscopy, depending on the results of the various tests I had at this appointment. The nurse was aware of the risks of my having a general anaesthetic, (The procedure she has in mind would normally be done under general) and said there are various options we could look at - none of them very pleasant, all of them pretty scary (!) - so I really don't know what I would do about that if it's necessary. I'm gonna have to do some research before my next appointment so I know the implications of those different options. (Anyone know much about these kinds of issues for ME patients??) Honestly I think I just have to hope upon hope that she decides it won't be necessary, because I don't know if I could risk a general anaesthetic, and without it the procedure would be pretty horrible. Either way, even as a day patient, it could have huge implications for my ME, as well. Even looking at just the thought of being in the hospital for a full day is pretty overwhelming, and would be incredibly difficult for me for so many reasons ... and that's without even going into the procedure itself, and the recovery period. However, I can't do much about it ... if it does end up being necessary, then I'll just have to cross that scary bridge when I come to it!

All in all it, the visit went about as well as it could have, I think. The unit really did try to accomodate my needs, which made things so much easier - and was a really nice change from the norm! The nurse was really shocked when I told her about the situation with my GP not making home visits, etc. (This was after she had seen the rather shocking list of my symptoms, etc) Everyone was just so nice!!! I just couldn't stop thinking, 'Is this what healthcare is like for 'normal' people?? Being respected and taken care of. Treated with kindness and compassion. Your needs being heard and effort being made to accommodate them. Not having to fight for every little thing you need. Not feeling like you are just an irritation to the staff. Not feeling like you have to fight to get people to even believe that you're really ill. Not having to justify & explain yourself & your illness & disability. Just being accepted and validated as a human being who is genuinely very ill. The truth is that the comparison between this experience, and the now normal-to-me experience of having to constantly fight a system which is doing it's best to make you feel like you are nothing, nobody ... it's just utterly shocking. It really highlights just how bad things are for me ... for so many of us. It seems really sad to me, when I think about it, that it would be a surprise - a shock even, for someone when they are simply treated with a normal amount of respect and compassion!

Is it really too much to ask, to just want to be treated like any other patient????

I've definitely had a rise in symptoms since the appointment, my pain especially has been pretty bad, and I've been feeling sort of numb, cognitively - but none of it has been as bad as it could've been had I not been able to lie down at the hospital. I feel like that made all the difference between it being extremely difficult, and an absolute nightmare! I feel it also made a difference that I rested so much in the couple of weeks before this appointment, and I'm going to have to keep to that over the next couple of months too, with a minimum of two more appointments to come. (It's unbelievably frustrating though to not be able to be online and communicate with friends!!!) Now I can only hope that the cardiology unit I have to go to next month will be as understanding & helpful!!

It was very strange going back to the hospital where I used to work as a NICU nurse. It's been so long since I was last there, and it all felt slightly unreal, like some kind of weird out of body experience! (Probably not helped by the kind of tunnel vision effect I got because of the combination of sensory overload & cognitive 'slowness'.) It really does feel like the me who was a nurse was a different me ... someone I barely even recognise anymore. A different lifetime and a different me. Different ... yet, somehow, at the same time, still exactly the same!

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)