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! :)