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!

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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!

 

Eventful

On Thursday 1st December I had my 6th Caffeine infusion. To say it was eventful would be an understatement. What has previously gone ahead pretty smoothly other than being unable to cannulate me without multiple attempts was littered with potentially dangerous errors. I am still in shock to be honest.

Over the few days leading up to the infusion my head was letting me know it was long overdue. By the time Thursday came around my head pain (from a csf leak) was reaching a 7 out of 10 on the pain scale within seconds of getting upright. By the time I reached the ward I was dry heaving, which happens when the pain gets to a certain level. I had felt sick before leaving the house and had taken my anti-sickness medication hours earlier but they had done nothing. All I was relying on to prevent me from blowing chunks were deep breaths and they were becoming ineffective.

On arriving at the unit I advised them of the fact I wanted to be sick, several times. My request for anti sickness medications went unanswered so I demanded a bowl as I didn’t want to puke all over myself when I didn’t have a change of clothes with me. In every other hospital situation I have been in when I have told staff I needed to be sick they have sprung into action. Here I was asked by one member of staff if I had a hangover, I don’t drink, well it’s easier to say I rarely drink. I had drunk two bottles of Budweiser the night before as my head was bad and it was a last resort but it wasn’t enough to give me a hangover. I calmly explained to the member of staff, the same member of staff I have been seeing since June (every month) that when my head is bad I will be sick. He knows who I am as he then asked me how my birthday had gone and laughed about the fact Mr Morris had booked me a dentist appointment on my birthday. So he could remember that but not the issue that I come in and see them for every month.

This time it was on my notes that I had to have an ECG, whilst wiring me up I was given a sick bowl. The battery was out on the machine so the nurse had to get a new one. Whilst she was gone I dry heaved into the bowl, bringing up no more than a couple of teaspoons worth of saliva. The dry heaving was automatic, I had no control over it, yet when the nurse came back she demanded I lie still so that she could do the ECG. Believe me it gets worse. Anyone with a modicum of common sense would have sorted out anti-sickness medication so that I didn’t want to dry heave during the ECG but no she was getting the ECG done and I wasn’t to interrupt with anything so petty as throwing up.

Finally after what seemed like an eternity I was presented with two tablets in a paper cup. I looked at them and I don’t know what happened but I asked the nurse what it was. A lot of the time I wouldn’t do this, many patients don’t and just assume what they are being given is correct. So let this be a lesson to you, accept no medication without asking what it is. Nurses / doctors are only human and make mistakes. The nurse told me it was ondansetron, a medication that I have suffered a hideous allergic reaction to when given via IV in 2014. Now this nurse (same one as the ECG nurse) had just put my red wrist band on, the one that alerts staff to the fact the patient has allergies so they must check their notes before issuing medication.

Red wrist band

Red wrist band

 

I carry with me at all times a mini medical file which contains the latest letters from my consultants, my prescription list (I can print off from the doctor’s surgery) and a list of my drug allergies as I have quite a few. Every time I arrive at this unit they ask if I have allergies, I give them the list, they scan it and the same receptionist tells me every time that I won’t need to bring it with me next time. On Thursday she just asked if I had allergies and printed off a red wrist band. I assumed that the allergy list was in my notes. After I pointed out I couldn’t be given ondansetron she checked my notes and surprise, surprise my allergy list wasn’t contained within the file. So my hospital buddy Sharon found it in my bag and gave it to her. Sharon was sat in shock that potentially this nurse had nearly just killed me. Sharon is a veteran of hospitals and said “I never ask what they are giving me, I just assume it’s right”. I told her over the months of me coming to the unit I had heard them give patients ondansetron as the anti-sickness medication of choice. It is probably the cheapest and I don’t blame them for that but not everyone can take them and before issuing a patient wearing a red wristband it might be an idea to check their allergies. If they don’t ask you demand to know what medication they are trying to give you. I don’t want to sound melodramatic but I might not be alive today if I hadn’t have asked the question on Thursday.

As I couldn’t take ondansetron, I was given cyclizine a medication I have taken numerous times before with no issue. In their wisdom they gave it to me in tablet form despite me telling them I wouldn’t keep it down. I had stopped drinking at this point despite my tongue sticking to the roof of my mouth as I was so dry. When I tell you that I am not going to be able to keep a medication down I am not pissing about or trying to be difficult. They ignored me, so I took the tablet and promptly threw it up much to the nursing staffs surprise.

I won’t lie I had come into hospital on Thursday fully expecting a fight with a nurse I shall refer to as Dick. Dick seems to have a problem with my wheelchair and will move it away from my bed and put it in the next room claiming it’s in the way. As my chair will cost £2,500 to replace I have an issue with it being left unattended. He even has a problem with my old wheelchair insisting it is folded up and moved away from the bed. He also won’t provide my hospital buddy with a chair let alone my husband so they always use my wheelchair.

Sharon had witnessed this nurse’s behaviour during my last caffeine infusion. She knew from our conversations over the last month that I wasn’t going to accept this from him this time. To me it seemed to be disability discrimination, he also has a problem with the walking stick I bring to help me transfer from my wheelchair to the bed. I was fully ready to get PALs involved if he kicked off this time. Much to our disappointment  Dick wasn’t on the ward when Sharon moved me through into the unit so by the time he came back from his break, she was fully ensconced in it, at the foot of my bed using it as a chair. We were pissing ourselves as we could see he was seething that we had got it past him. This entertained us greatly whilst we were there and the junior doctor we spoke to who managed to cannulate me first time whilst I was waiting for the cyclizine to come. Although he didn’t say it in so many words he also thought Dick was being a dick about the wheelchair.

The room in which I receive the infusions is pretty small, it has six beds and then a desk by the door where the nurses and doctors do their admin work. I don’t know which doctor it was that had to do the prescription for IV cyclizine but he was kicking off that they hadn’t done it IV to begin with when I was telling them I wouldn’t keep the tablet form down. So someone in there does have some common sense. I also heard the same doctor getting excited about my ECG asking the nurses who was in with sinus tachycardia, the nurse dealing with me told him “she’s always like that and we aren’t treating her for that”. Poor lamb had only wanted to help and was asking the question as to why my heart was racing whilst I was lying down still during an ECG, now we will never know as PoTs is only supposed to occur with changes of posture, I hadn’t moved for ages at the time the ECG was done.

Finally after what seemed like forever I was given IV Cyclizine. Within a few seconds of the injection being finished I really didn’t feel very well. I must’ve turned a funny colour too as Sharon told me I wasn’t looking very well. I suddenly felt very panicky and was worried that the nurse had just given me Iv Ondansetron. I just about managed to tell Sharon that my chest was tight and I felt woozy. Within seconds I was battling to remain conscious, my eyes were rolling in their sockets, unfortunately no one could see this as I had my large very dark glasses on as I become very light-sensitive when my head pain is bad. I felt myself falling as I slumped to the right hand side of the chair. For the briefest of moments I blacked out only coming around as Sharon was screaming my name and shaking my leg trying to rouse me. I couldn’t respond as I was still fighting to stay awake, I couldn’t focus on anything as my eyes just kept wanting to disappear into the back of my head.

Eventually the nurse realised something was wrong and whacked the bed back so that I was flat and then took my blood pressure. By the time she got her reading 109/73 I was feeling more or less with it again. She was trying to excuse herself for not noticing the fact I had passed out by telling Sharon and I it was because I was wearing makeup and sunglasses. I think the biggest clue was I wasn’t responding to Sharon and had slumped to one side. She did tell us that Cyclizine can crash your blood pressure which was obviously what it had just done. What she failed to tell me was that it would repeatedly crash my blood pressure for the remainder of my time in the unit. You’d think that she would have monitored me regularly after that episode but she only took my vitals once more and that was just before I left, nearly three hours after the faint.

I have faced some scary times when in hospital but that has to be one of the most frightening because I was shit scared the nurse had killed me by giving me IV Ondansetron and who can blame me with her laissez-faire attitude towards protocol.

I spent the rest of the infusion time trying very hard not to faint. Throughout the infusion despite the extra fluids going in, I kept feeling like I was going to pass out. I kept feeling like I was having an out-of-body experience. I knew if I fainted again there was a high probability of me not being allowed home, so I drank loads and kept being completely upright to an absolute minimum.

I only let Sharon know how bad I was feeling so that she could place herself in front of me should I try to face plant.

Despite how awful I felt I did have a good time during the infusion, it’s always great to catch up with Sharon, we always have something to say. Plus I got to catch up with a doctor who I thought I had lost forever to the acute stroke ward. He knew I had been to Bath the week before (it wasn’t a great appointment and all they will do for me is write a strongly worded letter to tell the hospital to get on with the blood patch as there is no increased medical risk) and we talked about the clinical trial that he wants me to be a part of. Its called a Sphenopalatine ganglion Block, it’s basically a small catheter type device placed up your nose, which they then use to squirt a dose of local anesthetic up. It works on a group of nerves at the back of the nose and has good results in conditions like chronic migraines, trigeminal neuralgia and facial pain. This doctor and my neurologist want to trial it to see if it is effective for pain caused by a CSF Leak and I am more than happy to give it a go if it has a chance of stopping my pain completely.

I let this doctor know that last month’s occipital neuralgia nerve block injections had been ineffective. I told him although the nurse that does them maybe highly qualified she doesn’t do it the same way he does, which is multiple small injections along the occipital nerve. He agreed due to the fact the last lot hadn’t worked he would repeat them for me, if he came back from his meeting before I left the unit. Thankfully I was still there on his return and the injections he gave me have worked beautifully.

I have very little memory of the rest of Thursday, Friday and most of Saturday as my blood pressure wouldn’t settle and kept crashing after the cyclizine injection. I have had to piece the events together from Sharon and my husband. I don’t think I have ever been made so sick from a trip to hospital.

Due to the incident with the nurse ignoring my red wrist band and attempting to give me a medication I am allergic to, I have had to report the incident to the hospital. I have wrestled my conscience and I wouldn’t be able to live with myself if another patient ended up being given the wrong medication due to protocols not being adhered to. It could make things very difficult for me in the unit but I couldn’t live with the thought that  by not making a complaint it contributed to someone else coming to harm.

So last week’s Caffeine infusion was eventful to say the least.

Abuse

Last week I finished the post by telling you all how excited I was that I was going to get out of the house for the first time in months. We did get out and on the whole is was a nice trip out but there were a few incidents that occurred whilst I was out of the house that shocked and upset me.

 

Over the last 9 years I have been pretty lucky in the fact that no one has abused me in the street for my disability. My sister, friends and acquaintances have told me about their experiences at the hands of Joe public and some of it, well all of it has been truly shocking. Until yesterday I felt like I was in a protective bubble, maybe others saw me as I saw myself, a strong and confident woman. Yesterday made me realise that some people only see the disability or my wheelchair and everything after that doesn’t matter. They don’t care about your disability because as far as they are concerned you are a big fat fake. Yesterday’s events have shaken me to the core.

 

Hubby and I decided to take a trip to Exeter our nearest big city. In the past and I have to say if I am honest yesterday as well, we have always been impressed on how much people help us with simple things like opening doors or wrangling children that are determined to run in front of me. So I wasn’t concerned with being abused for being unfortunate enough to use a wheelchair. I had heard horror stories from others but they hadn’t taken place in Exeter. We had some gift vouchers to spend and there were a couple of shops we wanted to have a look around. It wasn’t anything special just some time together with the dogs being looked after by a friend.

 

The first hour of our trip was uneventful, I am not going to name any of the shops where incidents occurred because they have no control over the general public’s behaviour.  As we approached a checkout in the first shop, there was a woman being served. We loaded our things onto the belt and waited to be served. Hubby turned to me and said “Do we need bags?” to which I replied “no I brought some with me”. As I spoke to him the woman customer stopped packing up her shopping and then looked me up and down. The look was of disgust, there was no smile or anything else for me to confuse her emotion with. She looked at me as if I had just taken a giant turd at the bottom of the conveyor belt. I brushed it off, this woman was the one with the problem not me. I don’t know what it was about me that disgusted her. It could have been the wheelchair or it could be that is how she looks at every stranger. I can’t say I was treated any differently because I was disabled but it made me uneasy. This had never happened to me before…..ever, pre disability or post. The woman left without saying a word and we got on with the business of packing and paying for our shopping.

 

We wandered around a few more shops and after an hour or so I needed the toilet. There is only one disabled toilet (that we know about) that isn’t confined to either genders, which means that Jay can come in with me or help me get into the bathroom. When the disabled toilets are part of a female block I can’t use them as I can’t maneuver my wheelchair adequately enough in tight spaces. Once in I wouldn’t be able to get back out again. Of course this toilet happens to be on the top floor of the store and the stairs are a no go, I’m not into extreme sports.

 

We patiently waited for the lift to arrive. When it did inside there was one heavily pregnant  woman the other woman had a pram. We made our way towards it and one of the women inside the lift turns to the other and says “Oh we’ve got the wrong floor” and shuts the doors on us. Again I can’t say that this was down to the wheelchair, I think it was mainly down to selfishness and ignorance. I am really annoyed now, so as the lift door was closing I shouted “cheers love!” in a sarcastic passive aggressive British way.

 

The next lift arrived swiftly and we hopped (well obviously I didn’t) aboard. We arrive at our floor and Jay pushes me towards the disabled toilets. Guess who we bump into ? Yep pram lady. She is blocking the access to the disabled toilet. She was much more helpful this time ( and also blushing) she told us the disabled toilet was in use but there was a family bathroom around the corner. Unfortunately that was engaged so we trundled back to the disabled toilet at the exact same moment her friend the heavily pregnant lady comes out.

 

I could have gone mad, shouted, sworn but I didn’t. You see she could have had a disability and be using the disabled bathroom for legitimate reasons. Who am I to judge? When I first got sick, I didn’t actually look sick, I was walking unaided etc. There was nothing that just by looking at me that would tell you I was disabled, obviously now the clue is the wheelchair but even then people still think that you are faking such is the hostility towards disabled people in this country. I was angry though because if she had been selfish enough towards me at the lifts then I really wouldn’t put it past her to use the disabled toilet when she didn’t have a disability.

 

I had been dismayed at the treatment I had received but I shrugged it off. People are selfish / weird sometimes and I wasn’t going to let it ruin our day out as they are so few and far between. We decided to leave the city centre and make our way over to a retail park on the outside of the city. We planned to browse at a couple of stores but our treatment in the first store meant our trip was cut short as I was too upset to continue.

 

We had heard a lot about this discount store and were looking forward to having a nosey around. Hopefully picking up a few household bits, nothing very exciting. We spent about 30 minutes in the store and it had been a successful shop. I had picked up a new curtain rail for my bedroom, plastic pint glasses for our summer party, dish brushes (which have become like gold dust for some reason), as you see nothing very exciting but I had got to pick them out and make decisions for a change. The checkouts weren’t very busy and when the customer in front of us had finished I manoeuvred myself down to the end of the checkout so that I could pack our shopping.

 

I should have realised we were in for a rare treat when the cashier didn’t even acknowledge our presence. As an ex checkout manager I know that customers should be greeted. A simple “hello” is not too much to ask. We were met with stony silence so we just decided to let that slide, thinking maybe the cashier had, had a shitty morning. Jay stood in front of the cashier as he was holding the curtain rail so that she could scan it as it was too bulky to make her put on the belt. As he also has experience with checkouts he likes to makes things easy for the cashiers. He held it up for her to scan, which she did but there was no acknowledgement or thank you. Yeah you can tell she went to an expensive charm school!

 

As I said earlier in my previous life I was a checkout manager, customer service was very close to my heart. I also know quite a bit about a checkout design but I won’t bore you with the details apart from they are designed for both the operator’s and the customers ease of use in mind. So if a checkout is designed without a back belt, it is made so the cashier naturally places the items after they have been scanned towards you. To place them anywhere else on the belt uses extra movement and twisting which if done repetitively is bad for the operators back, costing the company a lot of money in repetitive strain injuries claims. So I am not your average customer who knows nothing about how these things work.

 

Our cashier obviously had a problem with me / my wheelchair / my disability as with each item she moved it further and further away from me. So that I was reaching over the metal lip (at the back of the checkout that stops your goods falling onto the floor) and right across the back of the checkout. As I was packing an item I looked up but not in a way that was obvious, to see the cashier lift an item that she had already placed on the back belt (it’s still called that even when there is no back belt) and move it further away from me again, smirking to herself as she did so. I was stunned, initially I just thought she was an ignorant sod and clearly lacking in the common sense department but now I had just witnessed her deliberately moving an item. I was stunned, shocked into silence. Jay paid the woman and then grabbed the item that I had been unable to reach. It wasn’t until we got to the car that we spoke.

 

Jay had also seen the cashier deliberately move the item. Initially he thought that maybe the item hadn’t scanned and she was going to try again. Then when he saw her move the item further away from me, he realised what she had been up to. He had hoped that I hadn’t seen her do this but by the time I got to the car I was already in tears. We were both fuming. We just couldn’t believe that someone could do that to another person.

 

I was too cross yesterday about what had gone on to talk about it much. I also didn’t want it to overtake the whole of our day and ruin it. This morning though I was angrier than ever. I found our receipt and I emailed the company with the cashiers operator number, checkout number and the time we went through the till. Obviously having a retail background really helps in this situation as I know more than the average shopper.

 

I also posted about it on my own Facebook page and understandably people were outraged that someone could be so vindictive and malicious. I have so far refused to name the store where this occurred as I want to give them 7 days to respond. If they don’t respond I will write to them, if there is no response after that I will turn to social media. I don’t want the operator sacked but I do want her disciplined and informed that this behaviour isn’t acceptable. I don’t care what she thinks about people with disabilities outside of work but she needs to realise that in work she is representing the company she works for. Her actions have consequences and If I am unhappy with the company’s response I will not let it drop.

 

I thought that I was too old and wise to let myself be affected by this kind of childish behaviour but I have to say it really has knocked my confidence. I feel now that when I leave the house in future I will have a target on my back and will be abused again.

 

I am also angry that I didn’t say anything at the time but I just couldn’t believe that another person would think treating me that way was ok. I felt humiliated and degraded in a way that I have never been before. I have always been so sure of myself, my nickname at school was zippy as I was so gobby, people wished I had a zip on my mouth (like the character from the children’s TV show Rainbow). I hope that by making a complaint now rather than letting it go will prevent others being mistreated at this woman’s hands.
Disabled people have spending power and it would be foolish of any business to allow this kind of medieval attitude to disability prevail.

The Pain Game

I thought that I was well and truly done with the level of pain I have been experiencing for the past ten days. There has been no let up other than when I catch a break through falling asleep due to sheer exhaustion. It’s not a horrendous level of pain probably only a 6 or 7 out of 10 it is the fact that it is never-ending that is driving me to the brink.

My hips, knees and pelvis are all currently conspiring against me, each in competition with each other to see who can hurt me the most. When one eases off another goes in for the kill. I can’t actually remember ever having pain at this level for this amount of time. It’s a bone deep gnawing pain, not enough to make you cry out but enough to make you consider weeping if only you had the energy left.

I have racked my brain trying to work out what is behind this pain escalation. As my mobility is limited it’s not as if I have taken up hill walking or Zumba classes. I haven’t fallen or  done any Pilates (since the pain started) or sat in a way that would put stress on my joints. There hasn’t been a constant change in weather fronts (the weather plays a massive role in my pain intensity) or a  change in medication. There is nothing I can put my finger on that I can say “that did it”. Pain without a cause is frustrating, as how do you avoid it happening again? I don’t mind if I have done something that causes a few days of pain. I can live with that, it is when my body is punishing me for no apparent reason that I begin to despair. When will the pain end or as in my case when will the pain subside to a level that I am used to and I can cope with day in day out?

My vast quantities of pain medication are not working, which would normally be the case if I was suffering from nerve pain. This isn’t nerve pain as nerve pain has a completely different quality. Nerve pain or my nerve pain tends to be a burning, pins and needles pain. This is deep within my bones. My hips currently feel like they have been replaced with metal spikes and every movement or position is searingly uncomfortable. My knees to be fair aren’t too bad they are a dull ache only catching me out when I go upstairs, then the pain makes me squeak. My pelvis or to be more anatomically correct my iliac crests feel like someone has taken a hammer to them and my lower back is probably painful because my gait has been so badly thrown with everything else hurting.

I know the pain is bad at the moment as I am struggling to concentrate for more than a few minutes at a time. I am also waking every 2 hours, unable to keep comfortable when lying in bed. Sitting provides some relief for around an hour and then the pain comes roaring back. I could quite honestly weep I am so worn down with it all. I just don’t know how to get myself out of this pain game at the moment as I have explored all my usual tactics and nothing is working. Heat provides a small amount of relief until I become too hot, changing positions is fine as long as you aren’t trying to sleep but nothing brings relief for very long.

Remarkably so far it hasn’t brought my mood down too much yes I am fed up but not depressed, there is a world of difference between those two states. Whilst it would be perfectly understandable for a person with long-term chronic pain to have periods of depression I am just seriously naffed off.

I can’t believe that years ago I would manage to work whilst suffering this level of pain. I wonder if I have become more aware of pain or if it is just now that I am at home 24/7 that there just aren’t enough distractions. When you are running a department of 130 people and fighting battles to be treated with dignity there aren’t masses of opportunities to let the pain in. At that point even acknowledging the pain would have meant I would have lost the war. I did it all on massive doses of codeine and later oramorph when I developed bursitis in both hips and plantar fasciitis in both feet.

I am starting to think maybe on the pain front I gave up and now I am forever fighting to be back in control. To feel like you have given up is almost too much to bear. I still have doubts about my chariot (wheelchair) I blame myself for allowing myself to give in and use it when I should have pushed through. In reality I know that wasn’t a possibility. Not using the wheelchair would mean never experiencing the outside world again. Even if all I do is now get to look at people’s arses due to my eye line. I don’t know if it is the feeling of giving up or a feeling that I have failed as a human being. That I am no longer able but dis-abled.

The first part of this post was written in the midst of a massive pain flare up. Yesterday the pain settled, possibly due to a mega dose of B12. Some doctors would argue it was coincidental but I don’t think so. Why after so many days of pain would it settle 12 hours after the injections? Now however I am having a bad bout of insomnia. Chronic illness is so much fun you never know what will happen next. I was naffed off with the pain before but now I am seriously pissed off as tomorrow, well in fact now today, I am going out for a few hours with Jay (hubby) for the first time since August (2015). And yes you read that right.

Unfortunately insomnia before a big event and believe me leaving the house for a few hours when it’s not a medical appointment is a huge event, seems to send my adrenaline levels soaring. I become really twitchy and unable to settle. I have been trying to wind down since 7pm, now 6 hours ago. I have got up, I have watched TV, I have read, I have listened to the radio, I have meditated there is nothing I haven’t done to try to drift off. Yet sleep remains elusive. The good news is the pain really has settled it is the best it has been in months. I am just cross with myself that I didn’t recognise the signs of B12 deficiency, it is not as if I haven’t been down this road before. It’s just this time my left leg didn’t start burning.

The other bonus is of course I get to finish my blog post a day earlier than normal. I get to put it to bed, pun intended and do not have to worry about being too exhausted to complete it as I went out on a jolly.

I really hope at some point the sandman visits, otherwise Jay will have a grumpy Rachel to deal with whilst negotiating the city centre pushing me in my chariot.

Everyday Sexism

Sexism and sex discrimination is believed by many to rarely happen these days. We pride ourselves as a society as being more educated and more accepting than ever before however I believe the reverse is true. Things that were common before the Sex Discrimination Act was enacted are on the rise and going unchecked. I don’t know if this is a backlash against the perceived threat of feminism or if it is just that people know that its victims rarely if ever speak out about it? 

Sexism and discrimination exists throughout society. There is no area of life where women are not confronted by it. Medicine is an area where women are regularly subjected to outdated attitudes. On my long journey to get a diagnosis it was suggested to me that. I was feigning my illness because I was jealous that my sister was having a baby. The fact that my husband and I had chosen not to have children was never even asked about. It was assumed because I was a woman I wanted a child. Due to the doctor being unable to discover what was wrong with me my symptoms were written off as psychological. 

Females wait for longer for a diagnosis than their male counterparts in many areas of medicine, even in areas in which women are three times more likely to suffer from a condition such as autoimmune diseases. Medicine has been traditionally taught looking at the male anatomy only, in this small article here a doctor goes on to explain that women are much more than just “boobs and tubes”. Diseases affect men and women differently however this area of medical research still has its detractors. Men and women get sick in different ways and present in different ways as this article shows. 

If we constantly exclude 50% of the population how can we advance as a society. I am not about burning bras, although you will know from a previous blog post I did set one on fire accidentally recently! I don’t believe that men are anti-women but too many of our put downs are gender based. We are told to “man up”, “stop acting like a big girls blouse”, “put your big girl pants on”, “stop being a girl”. These phrases reinforce that men are strong and women are weak. Men are praised for their work, women are praised for their looks. It is so culturally ingrained in us that even those of us who fight against it use such phrases and repeat the same patterns without thinking.

A good example of our acceptance of everyday sexism is our own Prime minister David Cameron, whilst at Prime minister’s question time he told  Angela Eagle MP to “calm down dear”? Would he have said the same to a man? I am sure the campaign by the media showing us thinner and thinner female celebrities is a campaign for women to disappear in a puff of smoke.  A prime example of unattainable body types for women here from an advert that has been banned in France, in an article from The Guardian.

Having watched the TV series Mad Men, initially was horrified to see the sexual harassment / sex discrimination the women portrayed had to put up with. I have heard many TV commentators say how good it is that things have changed with the implementation of the 1975 Sex discrimination Act which made it illegal to treat women in the workplace any differently from men. I hate to break it to you but discrimination on the grounds of sex is still alive and well.  All too often sex discrimination goes hand in hand with sexual harassment. I believe sex discrimination  and the sexual harassment of women in the workplace is a widespread problem. Which is much under reported. Even less reported is the sexual harassment of men by women.

Sexism / sex discrimination is not confined the workplace but all over social media. Women on social media are being subjected to rape threats, threats of violence, even murder purely for campaigning on issues they feel passionate about. What is even worse is that some of the perpetrators of these threats are women. Why do so many people believe that discrimination / sexual harassment is ok?<

The staff structure in Mad Men, where the majority of management positions are held by men and the occasional stereotypical  management roles are held by women, is the same structure of most businesses today. Women, still as a majority have the part-time roles and hold the stereotypical management roles, such as HR managers. It is slowly changing with more women becoming managers however the more senior and executive roles are still being held by men. It seems odd with businesses mainly employing females would have entire management structures made up by men. More men seem to be promoted from within than women, despite women making up a larger section of the work force. How is that possible, why are so many talented women being sidelined?

I never experienced blatant sexism until I joined the workforce age 16 as a Saturday girl. I was completely unprepared for the sheer scale of it and the way it was seen as acceptable by the older more senior members of the work force, who were both male and female. There were around 15-20 Saturday girls when I joined my place of work. My eyes were soon opened to the way the male managers conducted themselves. I had believed naively that this kind of behaviour was a thing of the past.

There was a married predatory manager that liked to stalk the young female members of the work force in the warehouse where they would be alone with essentially no witnesses. Luckily one of the girls I had made friends with warned me about his antics straight off. He would pursue each victim in turn, he was basically looking for an  extramarital affair, he did not realise he was a topic of conversation in the canteen, his actions laughed at. He was as us young girls called him a sad old man. He had a thing for redheads and blonde’s, Jane (name changed to protect her identity) fell into this category as did I.

Unfortunately one of my jobs on a Saturday morning was to process the waste that had accrued from the night before. It meant I spent a fair amount of time alone in a dimly lit section of the warehouse where “Peter” liked to lurk. Peter tried it on with me a few times, I was lucky as I managed to rebuff his amorous advances. Jane had not been so lucky and was starting to feel physically sick at the thought of his advances. She would actively avoid wherever possible going into the warehouse. Due to our age, inexperience and the unapproachability of the senior managers, none of us reported his behaviour to the higher up managers. We had mentioned it to a supervisor (female), who told us we were flattering ourselves and should stop encouraging him. Jane left shortly after having had one too many encounters with Peter chasing her through the building.

This wasn’t the only sexual harassment I was subjected to in the workplace, whilst still legally a child. This time it was much more serious leaving me frightened to go to work and being caught alone with the perpetrator. I managed to pluck up the courage to speak to a member of the management team (male) who I felt comfortable with, who immediately took me to the HR managers office. I told them what had been happening, I was told not to be alone with him and to stop encouraging him. Victim shaming went on even then, it couldn’t be that this man was just a sexual predator who preyed on young girls / women, it had to be our fault for egging him on.

The older I got the worse the sexist behaviour became, when I moved to another branch I found the behaviour there even worse. During my first day there I heard myself being discussed by two males, I never did find out who they were. The conversation went as follows “have you met the new manager?” to which the other male replied “yeah”, the first male then said ” I can’t imagine why she’s been hired”. I was really disgusted by this but what could I do? It was the first day of my new job, I didn’t want to rock the boat.

It would only get worse, when at my tea break later in the afternoon I was asked by a senior management trainee “if my cuffs matched my collar?”. I had never heard that expression before, simply because no one I knew was that vulgar or crude. I had to ask them what they meant, to which they explained that they were asking did my blonde hair on my head, match my pubic hair. I was horrified, this was my introduction to the branch and already I was not being judged on what I could do but how I looked. I am ashamed to admit I laughed along with it, there were other older females present in the group and not one of them stood up for me, it was just accepted as “banter”. Banter doesn’t make you feel physically repulsed, however having already overheard the earlier conversation, I realised the attitude towards women was widespread throughout all levels of staff. The older women brushed it off as boys will be boys. It made me think do you ever hear the expression girls will be girls?

During my tour around the building I was shown inside a large fridge and hanging from the ceiling by a noose was a naked Barbie Doll. I asked the person showing me around what this was, having never seen anything like this in my life, not even at my last place at work and was informed “It’s the department mascot”. Every member of the management team knew about the “mascot” but no one did anything about it. Yet displaying pornographic pictures of women was against company policy. Unsurprisingly it belonged to the manager who had asked about my cuffs and collar. I quickly realised that women were seen as conquests and there to be ridiculed. Company policy was seen as very black and white, Barbie was not a picture therefore had not fallen foul of any company rules.

Within the first six weeks of being there I discovered a blatant case of sex discrimination. A woman was carrying out exactly the same job as a man, covering his holidays and working unsupervised was being paid a lesser amount than her male counterpart. She had been performing this job for years. Should she had wished to take the company to an employment tribunal, she would have won.There was no reasonable defence  or excuse for this situation other than it was a cost cutting exercise. When I raised this with my boss (male) I was made to feel like I had done something wrong. I was told I was deliberately causing trouble and not to tell the woman involved that she was being paid less than the man. It was the woman who had raised it with me. She had informed many managers over the years but no one had taken any action. With the bit between my teeth I relentlessly pursued this, making enemies left right and centre. In the end she was awarded the same rate of pay but the cheapskates refused to give her any of the back pay she so rightly deserved. I am sure there were many other cases of this going on, whether it was a deliberate case of sex discrimination or just keeping the cost of the payroll down, it can not be excused.

There were so many incidents over the first few years of working there that I started to become immune to it. I gave as good as I got but as the youngest member of the management team I shouldn’t have had to. My male boss should have been stopping it, he condoned the behaviour by doing nothing about it. As is usual with people like that due to being able to turn a blind eye he was promoted and moved on.

I was told that my role was purely ornamental by a senior manager , asked to tell another male manager what colour the bra I was wearing was before he would give me vital information for me to be able to perform my job. I was propositioned for sex on more occasions than I can remember. This was all seen as appropriate behaviour, when sexual advances were rejected the atmosphere could become hostile, suddenly faults were found with my work, documents were stolen from my in-tray and emails were mysteriously deleted. I knew that shagging around would lead to my advancement (I was told often enough) but I have never been that type of person.

Things slowly started getting better as the old guard moved on, promoted obviously. There were still occasions where I could be floored by the attitudes of male staff. A few months before I got married I was asked in all seriousness by a senior member of the management team as to “when are you fucking off and having babies?”. The female heavily pregnant manager sat beside me laughed at this. I was outraged and told him that what he had just said was wholly inappropriate. I was also asked by another member of the management team a month or so before my wedding if I “wanted one last fling?”

This kind of behaviour isn’t flattering, I didn’t return home and tell my soon to be husband I was so happy to be sexually propositioned again at work. I found to my cost it was pointless complaining about these managers behaviour due to the treatment I had received when complaining about it years before. You were made to feel that you had encouraged it or worse still you were flat-out disbelieved and told you weren’t that attractive. I was told by a female manager that she couldn’t see how I was being sexually harassed as she was far prettier than me and it wasn’t happening to her.

I have been out of the workforce for seven years but have kept in touch with co-workers. I regularly hear of women being asked questions that wouldn’t be asked if they were a male employee or being discriminated against due to their gender. We may in the UK have a law in place to prevent these things from happening but if there is a culture of fear due to an economic downturn and managers who do not take such complaints seriously then a business will never truly know how many incidences are taking place as they are not being told about them. 

It is frightening to stand up against sexism and discrimination. I am not naive enough to believe that only women are sexually harassed. Just this week there has been an article in The Telegraph, where bar men are refusing to wear Kilts, as they are fed up with women lifting their kilts up. It’s not banter if it makes someone else feel uncomfortable and image the uproar if a woman complained that male customers were pulling their skirts up. As the manager of the establishment says if this was done to women the man would be arrested for assault, women are rarely arrested for doing the same thing. Levelling the playing field does not mean treating men the same way they may have treated women in the past. It means treating everyone with dignity and respect, remembering if you would find the treatment unacceptable it is not acceptable for you to do it to someone else. It also means if a woman commits the crime of sexual assault (which putting your hands on someone else’s genitalia is) the complaint is taken seriously. 

Today I have watched a phone in debate regarding the safety of the HPV which in Japan was stopped over safety fears. Cases of adverse reactions are starting to be featured in the National Press. I fear that these adverse reactions are not taken seriously due to it being young females who are the one’s suffering. The reactions have included developing PoTS, Chronic Regional Pain Complex along with many others. The Dr on the phone in programme dismissed out of hand the connection to the vaccination despite the girls becoming ill within weeks of receiving it. He also had no idea about PoTS claiming it was just a fast heart rate. It left me thinking if it was young males having adverse reactions would their suffering be dismissed in the same way?

p.s sorry if this post seems like a rambling mess, I am really struggling with brain fog / fatigue currently.

 

The Response to “Dear Norms”

My blog post Dear Norms (WordPress version here) produced a response on my blog, my The Myasthenia Kid page on Facebook, my own personal Facebook page and the comments section of both blog platforms that I could only dream about.

Although it was fantastic to receive such a response my heart was heavy reading other people’s experiences of being abused by “Norms” due to their disability. I have been very lucky to have suffered very few incidences of abuse. One of which I wrote about – Well if you’re that f**king disabled get off Facebook and take up knitting (WordPress version here). The abuse I received via social network when what had been a friendly discussion got out of control, upset me for days afterwards. I now know I had simply been trolled by someone who would not accept I had a different viewpoint from her. When she realised I couldn’t be bullied into changing my opinion she launched her vicious tirade culminating in “well if you are that f**king disabled get off Facebook and take up knitting”. 

It made my anxiety about leaving the house much worse. I do not suffer with agoraphobia but the open hostility with which the disabled are met on a daily basis, causes me anxiety if I need to leave the house for appointments etc. Due to my chronic conditions making me virtually housebound, leaving the house is a big deal. I know that it will have consequences for my health, normally a rapid deterioration. Add in the highly likely scenario of facing some sort of abuse and or discrimination, leaving the house can have self-esteem / confidence implications as well.

One response came from my sister Lucy ( who I am hoping will be a guest blogger in the next few weeks ). She also suffers from Ehlers Danlos Syndrome Hypermobility type and Dysautonomia along with other conditions she has picked up along the way. 

My sister has faced an enormous amount of hostility regarding her illness from day one. My sister was a medical conundrum back in the early 1990’s at age 14. It was just at the time that Yuppie Flu so helpfully named by the media was coming into the fore. What the papers failed to realise or accept was that the so-called Yuppie Flu was in fact a real medical illness Myalgic Encephalomyelitis or M.E for short. 

My sister was accused of faking her illness, having school phobia and medical staff tried to blame my parents for her condition implying they were both suffering from Munchausen Syndrome By Proxy. Eventually the diagnosis was settled on she had M.E or Chronic Fatigue Syndrome, which it is also unhelpfully known as. M.E and Chronic Fatigue Syndrome has about as much in common as football and Ice Hockey but I digress as usual. She was diagnosed with Ehlers Danlos Syndrome and Dysautonomia shortly after I received my diagnosis in 2011.

My sister was so ill as a child (and still is) that she needed a wheelchair both indoors and out. For two years she was confined to her bed and suffered from epileptic like seizures. These were explained away by the medical profession as psychogenic seizures, the implication being that she was putting them on. It is believed to be some form of somatoform disorder / conversion disorder. (Isn’t it funny how we have both been told that we have a psychogenic illness?) If that was the case she should have received an academy award. The medical profession may have decided she wasn’t worth their time or effort but our family GP who worked tirelessly to try to help her. She did find as a young person in a wheelchair she was accepted on the whole by society. How things have changed.

On reading my post “Dear Norms” she was compelled to comment and this is what she said;

When we took my son to the out of hours doctors recently the first thing the doctor said was, “Is that your wheelchair?” I am so f**king sick of people in the medical profession asking me that question, especially when I am not even the bloody patient.That’s like me asking an abled bodied person if that’s their legs or a transplant donors! I feel like saying, ” No. I’m just a huge fan of Little Britain and I carry car bumper stickers with me all the time so I can pimp up other folks wheelchairs.” It’s beyond stupid, yet I come under the category of “Disabled!!!” 

 I was so shocked by what Lucy said I couldn’t come up with the words to explain the outrage I felt. On talking with her she told me it happens at every medical appointment she attends with a new doctor, whether she is the patient or her son/husband is. I am left scratching my head as to what the medical relevance is to the question “is that your wheelchair?” Especially when Lucy’s five-year old son is the patient.

I regularly get the question “Can you walk?” when meeting doctors whilst using my wheelchair. I understand they want to gauge what my mobility levels are but it is a highly offensive question when again it’s not medically relevant, such as when my bladder was in spasm and I was in acute urinary retention. The explanation from doctors would be that they are trying to assess what help I will need whilst in their care. The question is so loaded that I feel that every time I answer it I am being forced to justify my using a wheelchair.

For clarification I use my wheelchair for many reasons. The first is for safety I can be incredibly unsteady on my feet causing me to fall on numerous occasions daily. I can lose my balance stood still that’s how bad my balance issues are. Another reason is that walking causes me intense pain due to the Ehlers Danlos syndrome, knees give way or dislocate, hips have a tendency to pop out more than I do and don’t get me started on the mess that is my spine. My wheelchair is also used because of my Dysautonomia, my blood pressure can drop like a stone and when that happens I tend to as well. It happens without warning. Also being upright causes my heart to beat rapidly (130bpm) and this is exhausting. Yet my explanations are met with a wry sarcastic smile, it’s as if my conditions are disbelieved. The wheelchair is obviously just for show, I am a lazy cow who doesn’t like to walk anywhere. I mean wheelchair access is just so great nothing stops me……apart from stairs, escalators, badly designed kerbs etc.

Another person commented that her ex partner had used the word “spaz”, “mong”, “retard” as a term of abuse whilst they were in a relationship. Her children are also disabled so the ex wasn’t just abusing her but her children also. This made her see red and she smacked him in the puss – her words not mine. I don’t condone violence but when backed into a corner it can be a natural reaction.

A long time friend of mine whose comments you can see on my WordPress blog described being spat at and told to get out of his wheelchair and get a job. As he says the people who did this to him, don’t know him from Adam and they fail to realise he has worked for 40 years. Unfortunately all people see is his mode of transport, a wheelchair. The chair has become in their eyes his identity and he is reduced to being a leech on society, sub-human. This man, this friend of mine who served his country, was injured in the line of duty. Is this really the way we are going to treat wounded ex-servicemen? It makes me so angry that intelligent human beings are being degraded in this way by people who consider themselves normal.

I don’t believe that you can be what most people consider “normal” to treat another human being in this way. I am so angry but I have used up my profanity allowance for the day that I can not find the words to express how I feel. 

It seems “Dear Norms” stirred up a lot of feelings for many people. It exposed me to some truly shocking and horrific personal stories. I just wish the people I was addressing in that post would realise the horrific damage they are doing by using those words and holding those attitudes. As a society we will never evolve if the disabled are seen as a drain on the country’s finances and not as human beings who have something to offer the world.

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For those of you who may have missed this I have been nominated for a WEGO Health Activist Best in Show blogging award! This is a huge deal. I need your help though. Please could you follow this link which will take you to my nominee page. All you have to do is hit the purple endorse button and leave your name and email address. Both your name and email address will stay hidden, so I won’t know who you are or will anyone else. I need as many endorsements as possible to help my blog go through to the final stage.

This is a huge honour and the stuff of dreams for me. I have had this on my wish list for the last year or so and I am finding it very surreal that I have received a nomination. Thank you to everyone who has endorsed my blog so far You Are Awesome!