What are your aims with this appointment?

For a while now I have been moaning that my neck is sore / hurts / agony, take your pick. Last week I had blood tests to see if I was suffering from nutritional deficiencies and that is what was causing the numbness / pins and needles in my arms and face. Today I finally got to see a doctor. It was a long wait as with hubby’s hours it is easier if I can book an appointment on his day off, rather than have him come out of work and take me. It was actually getting the appointment to have my bloods taken that took the time to organise. It would appear Tuesday is a popular day. I then had to have the doctor’s appointment a week later. As luck would have it my neck actually wasn’t too sore today, the day I would finally see the doctor.


As this appointment was needed quickly ( although three weeks was three weeks too long really) I decided to take pot luck. I usually try to see the same doctor so there is some continuity of care and they have a basic idea of what is going on. However I was feeling very let down after my appointment in July where my neck pain was put down to stress. Now I was under a great deal of stress at the time mum had been diagnosed with cancer and there were other things going on in the background. So it would be an easy diagnosis to come to but even then I did come away from the appointment thinking I really should have been examined before this was written off as stress. It makes me worry that if I saw that doctor with chest pain that again it would be written off as stress when I could be having a heart attack. It’s not a nice situation to be in when you doubt your doctors clinical judgement. They are supposed to be the experts and be on your side, yet when you get written off as a basket case due to stress, it makes you not want to fight. Which is what I should have done because maybe I wouldn’t be in as much pain as I am now.


I will be the first to admit that yes I have been having some mental health struggles this year due to losing Willow and so many close friends and family in such a short space of time. I also went through a great deal of stress in the summer. I understand completely that mental health issues can manifest as physical issues. Yet the diagnosis of stress or anxiety or depression should only be given after an examination to check that there is nothing mechanically wrong. That didn’t happen during my appointment in July and I am angry about it. I am angry at myself for not asking the doctor why he or she felt that my symptoms of numb hands and neck pain didn’t warrant an examination. I understand that doctors especially gp’s are under enormous pressure, especially with health budgets being slashed, Don’t believe what the government tells you when it says its spending more in real terms its less money and our health service is drowning because of it. Just to make sure if this government stays in power when it suggests privatisation people will believe its the only thing to save our NHS and people like me will have no access to healthcare as we won’t be able to afford the insurance premiums. That’s my political rant over, I don’t do politics very often here but it needs said.


Anyway as usual I went off on a tangent, it makes me really angry when doctors are lazy and use a mental health diagnosis against a patient, which I feel is what happened to me in July. My notes say I am being treated for anxiety and depression, my mother has just been diagnosed with cancer so of course my physical symptoms are a manifestation of that. See how easy it is for a doctor to disregard real symptoms? The sad thing is people with anxiety and depression don’t have the energy to fight that kind of lazy doctoring. That was the position I was in then. I was happy to go along with what the doctor said because I trusted them. I am angry because they disregarded the Hippocratic oath of first do no harm. By brushing off my symptoms of stress they left me open to harm. I could have been suffering from a nutritional deficiency like B12 deficiency, a blood clot, vasculitis   a pinched nerve. However that doctor would never know as they were convinced it was stress and an increased dose of amiltriptyline would do the trick.


Today I was dreading my appointment, my mind was racing, was I going to be dismissed again as being stressed? Or would this doctor take the time to examine me?  I know doctors make mistakes and they are only human but a friend of mine almost died from meningitis after a doctor didn’t examine him. His wife found him unconscious in their home. If she hadn’t come home early from work he would have been dead. I had worked out through google and the fact that I have an ounce of common sense that the numb / pins and needles in my arms and face were being caused by a pinched nerve. Stress does not disappear when you put on a soft neck collar. Armed with this information plus the discharge notes from 2016 that contain the radiographers report from my MRI which says I have reversed cervical lordosis. I was ready to do battle and push for a diagnosis.


Why is it when you are prepared for a fight you never get one? Is it because you are giving off the don’t fuck with me vibes? I don’t know. This doctor examined me, so thoroughly that I have been in an awful lot of pain for the remainder of the day. I can’t complain about that at least this time I was taken seriously. However something they said really threw me, after they examined me they asked ” and what are your aims for this appointment?”. I have to say this really threw me, looking back now I wish I’d said ” well my aim is that I get a fucking diagnosis, after all you’re the doctor”. But I imagine that wouldn’t have gone down well and I may be looking for another healthcare provider if I had. But seriously what kind of question is that? That’s business speak and that has no place in an NHS doctors appointment. Why ask that question? Had I not had years of experience as a manager I may have found myself at a loss for words. Why do most people go to the doctors? To get help? Support? Advice? A diagnosis perhaps? Did they think I was going to say ” I want you to wave a magic wand and make my pain go away?” Did they think after years of dealing with doctors that I would have unrealistic expectations? I have Ehlers Danlos Syndrome I have learnt to expect nothing from a doctor other than a shoulder shrug at best. As you may be able to tell this question ” and what are your aims for this appointment” has really bloody annoyed me.


I was expecting at some point they were going to ask me to complete a PDP ( personal development plan) with SMART objectives Specific, Measurable, Achievable, Realistic, Targets. Or maybe they would have me complete a Root Cause Analysis so we could get to the bottom of what was triggering my neck pain. You see I did 18 years of bullshit management speak. To my shame I taught this shit to up and coming managers in a previous life. It has no place in the NHS as I am a patient not a customer, it has no place in an appointment because all I expect in an appointment is for the doctor to do their job. I have no idea what you will suggest because I am not a mind reader, I thought perhaps you might say I need an X-ray or an MRI or maybe even physio but all I wanted from you was a plan. I don’t know what your other patients want from you but from this patient to you please stop asking that question or think of something else to say. I get that some patients may come in expecting top-notch state of the art care like they see on Holby City  / Greys Anatomy/ any other popular hospital drama and your job is to manage unrealistic expectations. I don’t and that question has really annoyed me ( no shit Rach, I can hear you all saying!).


Now some of you may think that I am over reacting to this innocent question but to me it was a loaded question. I don’t doubt that this doctor had my best interests at heart, they after all discovered that I have altered sensation in my left arm and areas of complete numbness, they also have given the diagnosis of a pinched nerve in my neck. Which was the same conclusion I had come to. To me the question could be one asked by someone trying to figure out what the bare minimum is that they will get away with providing . Call me cynical but after having to do battle with numerous doctors over the years I know that cost is coming into clinical decisions more and more. It can’t be helped when the purse strings have been tightened so much that even targets for patients with cancer are being missed by the majority of NHS hospitals. If  my aim was to have my pain reduced that’s a quick win as they could give me a prescription for pain meds, if I wanted a referral to a spinal surgeon then my expectations would have to be managed and ( as I know) physio would have to be tried first. As it is I want to avoid surgery on my neck at all costs. To me the risk are just too high, that unless I am completely incapacitated by pain,  it’s not an option I want to go for. 

Having seen a spinal surgeon before I know they like you to try all options before you go for surgery and I am happy with that. Physio treatment in 2014 or 2015 meant I avoided a spinal fusion. I know that without having jumped through that hoop any referral to see a surgeon would be rejected by the hospital because all non surgical routes had not been explored. 

I have declined using the NHS physio team as unfortunately they are utterly useless when it comes to dealing with people with EDS. The last NHS physio I saw was supposed to be an expert on the condition and I could have written what she knew about EDS could have been written on the back of a postage stamp. She became totally fixated on my wheelchair, so none of the exercises were there to help the problem I was seeing her for but more to get me walking rather than using a wheelchair. I use a wheelchair due to the fact I faint without warning which leave me at a serious risk for a head injury, I also dislocate my knees, hips, ankles and spine when I walk more than a few metres. I also develop bursitis in my hips if I walk too much ( too much being more than a few metres). I had to give up walking my dogs in 2008 as I kept waking up on Woodbury common bleeding not knowing what had happened to me and the dogs wandering down the path in front of me. Thankfully the doctor I saw today was horrified at this physios dangerous fixation and agreed with me that preventing head injury and pain was imperative. Someone who was supposed to be an expert in EDS and PoTs should have known that. Hence why I am incredibly sceptical as to who gave this physio the title of an EDS expert because I have more knowledge than they do.

So I am going back to the private physio I saw in 2014 and had fantastic results with. It is incredibly expensive but I am hopeful if anyone can help me avoid spinal surgery Jane will. I hate using private instead of the NHS but I am afraid NHS appointments are too rushed. I need longer than 15 minutes, I need someone who will work with me and will admit that they know nothing about the condition rather than pretend they are an expert. It also means I wont have to travel 30 minutes to an appointment which will exhaust me before I even get there. Or the unrealistic expectation that I can go three times a week, when I don’t have a driving licence and can’t manage public transport alone as my wheelchair is attendant pushed how am I supposed to get there? Because I am a paying customer there I am  treated in a much better way and they understand that there us a life outside of the health service something which some NHS staff struggle to understand. I am incredibly lucky that I am in the position where currently I can afford to pay for private treatment but it will still put a strain on my finances.

So I wonder what will be the next go to question at any future gp’s appointment? As long as it isn’t “and what do you want me to do about it?” I think I’ll cope!

Odd ones

 

A few weeks ago an incident happened that has happened many times before to me on social media, I was hit on by a complete stranger. They seem to all go to the same school of charm, as the same phrase is always used. I was told yet again “Btw (by the way) your profile photo is really sexy”. This always makes me roar with laughter as my profile photo is usually one of my dogs. I hate having my photograph taken and I rarely post photos of myself unless it’s of me with ptosis The men that use this phrase clearly don’t actually look at the profile picture they are sending this crap out to or they really do need glasses!

I suppose Frankie could look sexy if you were into that kind of thing LOL!

My husband had no idea how often this happens to me, I simply hadn’t bothered to tell him. I am probably like most women, so used to this crap that it really doesn’t bother me anymore. I might find it creepy some days but I usually send the person back quite a rude response and immediately block them so I can have no further dialogue with them. Due to my position as an admin on a Facebook group, I have to set my messages so that I can receive them from anyone. Facebook naturally filters them for me into people I am friends with, those messages go straight into my inbox and people I don’t know come up as message requests. Thankfully I can preview these without the other person knowing, so that should I wish to I can decline them.

 

However a few weeks ago I had the same issue with “your profile picture is very sexy” but this time it wasn’t a stranger, out of the blue. No this was during a serious conversation I was having with an admin from another group. I had contacted this admin as a favour as I had joined his group only to see that there was an ex member of the group I admin in there. This member had been removed due to his aggressive and confrontational / rude behaviour and I could see that he was up to his old tricks in this new  group. As a favour I thought I would give this admin the heads up. Oh how I wish I hadn’t, the conversation started up normally enough and then out of nowhere came the creepy statement. All respect I had for this gentleman left me right there, why would you do that ? and why on earth would you think that was ok?

 

Why is it that men seem to think that the internet is just another way to be pervy to women? What did this man, let’s call him Chris think I was going to say after he told me my profile picture was very sexy? “Oh thank you kind sir, let’s run away together?” At the time I just said “erm thanks the photo is of my dog’s nose” I exited the conversation quickly after that and I am happy to say he hasn’t contacted me again.

 

Now if he did this to me and he barely knows me, literally we are in the same health issue group, what is he doing to women in the group he helps run? Women who he knows are vulnerable, to me that is the behaviour of a predator. Unfortunately it’s not the first time I have heard about a male admin or husband’s of an admin taking advantage of their position to gain sexual satisfaction. It really brings it home to you that you should never blindly trust someone on the internet, I am always quite cautious but even I have had occasions where I have let my guard down and been punished for it. However it is usually females that take advantage of me, by monopolizing my time, asking highly personal questions and then when I tell them that I won’t answer that question, I have had them get extremely nasty with me or make out that I am taking offence for no reason.

 

The male pervs I can deal with, as I say they normally get a special message back from me. It’s the females I find incredibly difficult to deal with, sometimes it can take me years to  stand up to them. I never divulge things I don’t want to, I won’t be bullied into that. I seem to attract the ones who are emotional vampires, who are in competition with me as to who really is the sickest them or me.  Anyone who knows me knows that I really don’t fucking care who is the sickest it’s not a game I play. They are the ones that only ever talk about themselves and when you look back at the messages you have from them you see that they rarely ever ask you how you are doing.

 

I write a blog, I give information away freely it’s something I chose to do.I also control the information that I share. I also understand that people will contact me as part of that. 99 times out of 100 I have no problem at all with the people who contact me and I am more than happy to help whenever I can. The downside is even though my blog audience is pretty small by the grand scheme of things and my page only has a hundred or so followers on

Facebook. I do seem to attract more than my fair share of weirdos. I have been asked for money, I have been asked if I want to join an investment schemes but the ones that really get my goat are the ones that steal my time. They are the ones that message me incessantly for days on end, that claim to be big fans of my blog but the questions they ask prove time and time again they’ve never read it. They are also the ones that claim to know all about my illnesses, yet the things they say prove they don’t. I try so hard to be polite and kind to  everyone I encounter online but some people think that gives them the green light to walk all over me or to ask deeply personal questions. When I point out that I won’t answer the question and why, I am belittled through mocking apologies. Yet when I stand up for myself and tell these people to sling their hooks I am the one left feeling bad about it. I just can’t win.

 

Some of these encounters make me want to just shut down all my social media accounts and run away. But then I think to myself why should I be the one to suffer? All I have ever done with my blog is try to tell my story and hopefully help others who maybe at a different stage of the journey. The majority of my online encounters are lovely it’s just the odd one or two that leave me with a bad taste in my mouth. It’s the odd ones with a problem not me!