Thursday 27 July 2017

Differences in our thinking

A couple of weeks ago hubby and I were watching the local evening news, when a story came on that divided us completely. That doesn’t happen very often in this house, usually we are on the same page with most things. The story reported was disturbing to me yet provoked him to giggle. I am not saying I am right and he is wrong, we discussed both of our reactions immediately after the news item aired, it gave us both an insight into how male and female brains work. He was shocked at how most of us women view things and I got to understand why he reacted the way he had. It exposed the differences in our thinking.

Now before I go into this in any detail I need to say my husband isn’t a sexist pig, he isn’t even slightly sexist. He was outraged on Monday morning with how little coverage the England Women’s Cricket Team got on Sky Sports News, the headline being Chris Froome winning the Tour de France and then Jordan Spieth winning the Open. He felt that England's Women's Cricket Team winning the World Cup should have been leading the news. He also loved the fact that two female chefs made it to the banquet on The Great British Menu, which we are still catching up on. He believes that women should be treated equally but that doesn’t mean he is a mind reader, knowing how we / I think and feel about certain issues.

The story was also covered in the local newspaper (which you can find here), for those of you who don’t have the time to read the article I shall give you an overview. A young woman in her 20’s was sat alone in her house when she became aware that someone was attempting to get into her property. As she walked into her kitchen she saw a man outside the window, masturbating. He had been trying to gain access into the property for around 30 minutes and obviously this young woman was terrified. She managed to get the man to leave her property but he continued to expose himself. Understandably, well to me anyway, the lady was shaken up by the experience.

My immediate reaction was revulsion and feeling angry that yet another young woman had been put through this ordeal. Yet hubby’s reaction was to laugh, now I am not going to lie and say this didn’t get my dander up. I don’t know if he was laughing because the very posh news reader was having to say the word masturbation on the evening news or that he genuinely thought the whole thing was funny. I was too cross at this point to ask him. However it became clear as I was talking to him, he had no idea that some (possibly most) females would feel threatened by this behaviour. He had no clue that many of us would panic and fear the prospect of being raped, should a man expose himself and masturbate in front of us. He had no idea that the female brain would make that leap (obviously he does now).

Now some of you reading this may think that I am over reacting but having spoken to several female friends about it, I know that my fear of sexual violence isn’t mine alone. A man, unknown to you exposing himself or exposing himself and masturbating in front of you is a frightening thing. For the man I am guessing it is all about the power of generating fear in his victim, he may get off on that.

I explained to hubby about my feelings regarding the story. That men who expose themselves tend to jump out on their victims or corner them when alone. I have never heard of a case where a man has exposed himself in the middle of the high street at rush hour (but that doesn’t mean it's never happened). Events like these a premeditated they don’t happen by accident. Had the man who terrorised the woman in the news article seen that there was a man present on the property the chances are he wouldn’t have done it. I won’t pretend I know the motivations of why a man would choose to terrorise another person like this but it makes me very angry. I am still angry.

Hubby had never made the connection that I made and many of my female friends made about the link from a man exposing himself to the fear of rape. Why would he? Although men are raped by both sexes, very little appears in the press about it, which only adds to the sense of shame for the victims. (statistics on male rape here) He never realised the fear that an act of exposure / indecency could induce. He was quite shocked that this was how I felt. Why would he had known it wasn’t a subject that we had discussed in 21 years of being together. It made me understand why he didn’t initially see it the way he did because as a man he doesn’t see himself as a potential victim of any kind of sexual violence, whereas most women (I believe) do.

I think what made me angry about his laughter at the news item is the fact as a child I was the victim of sexual harassment / sexual assault. I was 13 years old, waiting to meet up with friends before going into school for the day. I was dressed in my school uniform. The street was busy with kids arriving and a few adults were around. I became aware of a man crossing the road directly opposite to me. He was wearing big dark glasses and was using a white cane. As he stepped up on the pavement in front of me, he used the white cane to lift my skirt up, exposing my underwear for all to see. I was so shocked that I screamed, the man ran off, folding up the white cane as he left. He wasn’t blind he had merely used that as a disguise.

The kids that saw what happened laughed, no one took what had just happened seriously. Because of their reaction, I thought by screaming I had over reacted and didn’t say anything to the teachers. Now obviously years later I realise the man who did this to me was some sort of pervert or paedophile. At the time I hadn’t feared being raped, I was just mortified that my body had been exposed to numerous people without my consent. I feel guilty that I didn’t report the incident to the police or the teachers and that this sicko may have gone on to do this to other girls. However we are talking about an incident 30 years ago and things were treated very differently then.

That wasn’t the last time that I was sexually assaulted, in the early 2000 when I was at work, I assisted in escorting some rowdy customers leaving the store. As I was walking behind the two men, one of them turned around and grabbed my breasts. After they had left the store I raised it with the Manager (male) and he laughed. I was really angry and pointed out that I had just been sexually assaulted, I wanted the police called. I was basically told I was making a fuss about nothing. As I hadn’t found my voice then I let it go. Which obviously I now realise I should have made an enormous fuss, this was not ok.

Now on both these occasions I was in a public place and I didn’t fear being raped. However if I had been that woman alone in her house, with someone prowling around outside that would have scared me. Without then looking out of a window and seeing what she saw. I don’t think, well I know, I am not the only female on the planet that would have been terrified by this.

Now my husband understands the fear we as women can have, I can’t blame him for not ever thinking about it. Rarely do we think about these things unless we have had something similar happen to us. He was horrified that women think like that and he had no clue. No one should be made fearful in their own home or outside in the rest of the world, regardless of their gender.

And if you want to know he was laughing at the word masturbation being on the news. If different circumstances I may have giggled like a teenager also.

A good article on Everyday Sexual Assault can be found here.

Thursday 20 July 2017

This is a temporary state

I am struggling physically struggling at the moment. Mentally other than being frustrated by my lack of ability to do much, I am ok. I am so exhausted all the time it can make putting a blog post together extremely difficult. I can’t really concentrate and my mind wanders. So today’s offering is going to be short and sweet. It's frustrating as I have a few pieces I want to write but just can’t, my arms won't work properly to be able to type and my speech is buggered after a while so the voice recognition software I have installed is making a real hash of things or maybe it’s just me?

I am still currently waiting for an appointment to see the neurologist. Last Friday I emailed my PoTs consultant, as I wanted him to know that the mestinon was resolving my ptosis (as it always has) and that I was only taking half a tablet, 30mg as I know what a number 60mg does to me. A whole tablet works wonders on my whole body, it relieves the weakness and brings me back to my normal levels. However 60mg comes with consequences due to the bowel adhesions I have riddling my abdomen. To be blunt it feels like I am being disemboweled when I take 60mg, I don’t have diarrhoea or sickness with it, it just feels like someone is trying to extract my intestines through my belly button for around 4 hours at a time, until the dose wears off. I explained this to my consultant, who ideally would like me to take 60mg up to 4 times a day. You can understand my reticence.

I received an email back an hour or so later, letting me know he had forwarded on my email to the neurologist that he has referred me to. He was obviously keen to let her know that the mestinon works. I had explained to him in the email that I had taken a bit of a nose dive since I had seen him. I then panicked and must’ve read and re-read the email that I wrote making sure there was nothing in there slagging off neurologists. Neurologists aren’t my favourite brand of medicine, I have been treated appallingly by some in the past, although I landed on my feet with my neurologists last year.

On Sunday morning I received an email from the neurologist, which surprised me. I hadn’t expected any kind of response from her at all. She wanted to know if I had my appointment through yet to see her and could I let her know as she would chase it up. She wanted to see me as soon as possible. She also asked me to ask my gp to prescribe a medication called propantheline, this would hopefully stop the awful cramps / pain I am getting when I take more than 30mg of mestinon. Both she and my PoTs consultant want me on 60mg four times a day as soon as possible. I have taken propantheline before and it has been effective. I am hoping that it works, if and when it is prescribed.

So really that is all that is happening at the moment, I am just trying to keep myself on an even keel, not push myself to do stuff and try to not get too frustrated when my body refuses to obey my commands. As my husband told me this week in one of his profound moments “this is a temporary state”.

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Thursday 13 July 2017


Currently I am in diagnostic limbo, awaiting tests to confirm or deny the diagnosis of Myasthenia Gravis (again). It is a deeply frustrating time, whilst I wait around for my first appointment, I am essentially in no man's land. Technically until proven otherwise there is essentially nothing wrong with me yet those who know me, know that what is happening at the moment is beyond my normal levels of crap health.

The hoops have already been set for me to jump through. Although my consultant has written to my gp requesting that he / she prescribes mestinon for me to alleviate the worst of my symptoms. A drug that is also used for PoTs although in this community it’s known as pyridostigmine bromide as it raises standing blood pressure. You’d think I was asking for crack cocaine to be prescribed. On Tuesday evening at 17:30 I had a phone call from the doctor's surgery asking me to book an appointment to see my gp as the gp “wanted to speak to me about pyridostigmine bromide”. Now I maybe way off base but to me this doesn’t sound good. I raised the possibility of MG with this dr back in May and was essentially ignored, now they want to discuss it? I have never had an issue with my consultant asking my gp to write a prescription and it necessitating an appointment to discuss it.

* * *

I started writing this post on Saturday morning and was too ill to continue writing it. As you can probably tell I was a little wound up by the prospect of having to do battle with another doctor so soon. I have been getting weaker over the last few days, finding my legs turning to jelly along with my arms. The stress of waiting to see the doctor yesterday didn’t help. By the time it came for me to leave the house, my ptosis was the worst it's been in a while with it also affecting my mouth, causing me to drool.

As it turns out I got myself all worked up for nothing. The gp wanted to ensure my understanding about Myasthenia Gravis, Pyridostigmine Bromide and to work on a plan for if I was to get worse before seeing the Neurologist. That was a weight off my mind, I am so used to having to attend an appointment and be prepared for a fight when it comes to MG, I couldn’t see it going any other way. It was such a relief. I know that the neurology appointment is a different kettle of fish but for the time being I can relax a little and work on being a bit more stable. I have had 19 days of ptosis (I still can’t believe I coped with this for nine months solid in the past) but now at least I have the medication to stop it in its tracks.

I decided to hell with it all yesterday on my personal Facebook feed and posted the photo that is above (but a colour version). I explained that Myasthenia Gravis was back on the cards again and that this is what I had been dealing with on a daily basis for 18 days (at that point). I always try to distance my own page from my health as I have had some really awful stuff said to me before. I tend to keep most things limited to my blog or my Myasthenia Kid Facebook page, so that people can choose to follow or not. I shouldn’t have to do that but I do because society can’t cope with an illness that doesn’t get better. It doesn’t understand that you can have good days and bad days. I find it easier to self censor than face the bullshit that comes with being honest. Sad but true.

So this is going to be a very short post as my arms are shaking from using the chromebook and I feel like crap. I can’t lie. Mestinon has been started and the same results as ten years ago achieved, as in my ptosis resolves within 20-30 minutes, longer if I am really bad and the weakness in my limbs lessens.

I did have a wry smile yesterday when the gp added to my notes “Myasthenia Gravis” but then I have been here before. Still currently officially in limbo.

Thursday 6 July 2017

MG or Not MG that is the question.....

For a long time I have been pondering about changing the name of my blog. The Myasthenia Kid name seemed to have become pointless, I wasn’t having as much ptosis as I was in the early days and it had been many years since I had been brave enough to raise the subject of Myasthenia Gravis with my doctors. I had become used to the silent eye rolls that happened if the subject strayed anywhere near MG in a doctor’s presence. Basically I had been belittled or shamed  into silence and as my symptoms weren’t bothering me so why rock the boat, when it had taken me so bloody long to be taken seriously?

I saw my own gp earlier on in the month as I needed to get my blood and x-ray results, I had full-blown ptosis then. I raised the fact that no one knew why I had this and explained  it tended to happen when I was sicker than normal. She basically shrugged her shoulders and left it there. When you are faced with that kind of attitude when you bring up a distressing symptom it is soul-destroying. You can understand now why over the past 8/9 years I have chosen not to.

On Thursday last week I saw my PoTs consultant, hubby and I had been taking bets on if my ptosis would turn up at all before we left for the hospital. Anyone with fluctuating symptoms knows that rarely do they show up on a day that you need them to. Within an hour of getting up early on Thursday morning I knew it wasn’t a case of if but when. I felt absolutely dreadful, my heart was doing its slow beats, followed by rapid palpitation inducing beats. My head felt like it was swimming, my body just felt like it didn’t have the strength I needed to be able to get washed, dressed and out of the door. If I could have lain on my bed all day and just sobbed I would have preferred that to having to pretend I was well enough to get to my appointment. I couldn’t miss this one as it was my second official appointment with my hospital appointment. The first one being back in 2015 (which isn’t last year), I hadn’t been able to see him officially in 2016 at all due to developing a CSF Leak, although I had seen him unofficially as he always popped in when I was having my caffeine infusions.

I was really nervous about the appointment, it had been a long hard road to get to see him and I have never raised the subject of MG. I had never needed too and he had never seen me with full-blown ptosis. I was concerned that raising the issue now may impact on our patient / doctor relationship. It was a big risk, one I hadn’t taken in many years but what choice did I have when I hadn’t only been suffering from ptosis but breathing, swallowing and chewing issues.I have also had problems with being able to walk, where although I know my brain is telling my legs to move nothing happens. Everything except the breathing issues had always been written off as EDS before, once I got that diagnosis in 2011. There are reports of people with EDS who have ptosis but none of the photos I have seen accompanying the medical literature look like mine. They have the droopy eyelids, but they don’t have the eyebrow drop, side of the mouth drop or the pupil drift that I do.

I think it is pretty safe to say my consultant was pretty shocked when I took off my sunglasses when we got into his consulting room. I am extremely self-conscious about the way I look when I have ptosis. This stems back to when I had two people openly take the piss out of me when I sat in the doctor's surgery many years ago and the crap I took off some people when I was at work, they thought they were hysterically funny to shout “eye, eye” etc whenever I was in the vicinity. When it is bad I tend to wear oversized sunglasses that hide both my eye and my eyebrow, so I don’t get the stares etc.

I gave my consultant a brief overview of what has been going on, how it’s not just ptosis and that other bits of me are refusing to work. I gave him a very high level summary of my history of ptosis and my treatment at the hands of the local hospital when all tests proved negative.However he like me agrees with the fact that the first Tensilon test was positive because my eye opened, unlike their view that whilst it opened it didn’t remain open long enough. He like me also felt I shouldn’t have had the second Tensilon test when my blood pressure was in the toilet (80/50) and I had a pulse of 54. I had already come close to passing out whilst waiting to be checked in.The Atropine I was given as part of the test made my heart rate soar to 140 bpm and yes my eye opened with the Atropine and not the Tensilon, which was given last. I was so unwell the day of that test I should have just been observed and given IV fluids.

Knowing that the “only” test (if you ignore the first Tensilon test) I have been positive on was the ice pack test, I had come prepared with a freezer block in a cool bag. I made my consultant touch it, so he could feel that it was cold and then with it wrapped in some kitchen towel I proceeded to apply it to my eye. As I was doing this we continued to chat, I then removed the block and showed him that the ptosis had resolved. He looked at me and said “That’s a positive indicator for MG”. I was quite impressed that he knew this. None of the non MG familiar doctors I have shown this to have been aware of this. I told him “ I know that, you know that, they know that but according to XXXXX hospital I don’t have MG” I explained to him that I had spoken to a woman who has designed the blood tests for MG. A prominent and world-renowned scientist in the field of MG, who told me that this was a sign that there was something wrong with the neuromuscular junction, for the ice pack test to have this effect.

Yet this was dismissed out of hand by two hospitals, one suggested that I was faking the ptosis for attention and my old gp surgery had suggested in a letter to the hospital that I was faking for financial gain. When I requested my medical records I doubt very much my old doctors practice had ever expected that letter to be copied and released to me. The financial gain supposedly was due to the fact I had asked them to fill in some financial documents to claim on my insurance to be able to pay my household bills whilst I was off work. If I had been poverty-stricken and lost my home would I have been more believable?

I had been treated so badly by so many doctors in the past, this had been a massive gamble and I explained this to my consultant. I believed my MG symptoms had been kept in check / been stable because I severely restricted what I did physically. I had been started to feel better than I had in years this April and had stepped up what I was doing as a result. Now this had all come crashing down around me, the MG like symptoms were back and it didn’t matter how much rest I had they weren’t going away. My consultant was very honest with me and told me “unofficially I think you have Myasthenia Gravis but I am not a neurologist and can’t give you that diagnosis” he then added “if you don’t have MG you have another neuromuscular condition and I am going to refer you to a movement disorder specialist.”

Any normal person would have been walking on air with this validation but I am afraid, I have been there, seen that and got the t-shirt. I am not hopeful of getting a diagnosis, hope leads to disappointment. As I said last week all I want is to know the reason why my body behaves the way that it does and if there is anything we can do about it. The slight glimmer of hope I have is that since 2009 doctors seem to be more open to the fact that there are some patients who are not positive for the Achr blood test. It seems to be more accepted now than when I was going through this the first time around. However I was always negative on the SFEMG’s which is considered the gold standard test. But this test relies on the competence of the person performing them, something which doesn’t seem to be considered very often.

I know that the waiting lists are long, especially for neurology and like last year, I may be refused on the first request. My consultant did tell me that he was asking for me to be seen asap but it could still be a wait. I replied without thinking “I know, it’s not life and death stuff” but he brought me back to earth with a bump and said “ well actually it could be if you go into an MG crisis”. To be honest currently that is what scares me the most, what if this happens and I don’t get the medical care I need because I don’t have the diagnosis? Especially if it happens here, where the care has been awful previously. I can’t fault the A&E staff when I presented with breathing issues in 2008 nor the ambulance staff that put on their blue lights when I was in and out of consciousness. It was the on call neurologist who overruled them all, telling  them I was having a panic attack and screamed at me when I couldn’t read the eye chart because of double vision. There have been a few avoidable deaths this year in the worldwide MG community,  where the signs of a MG crisis have been ignored and written off as a panic attacks and those have been when people have had a concrete diagnosis.

So I am back to the age-old question MG or not MG, at the moment who knows?

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