I can’t lie, I am struggling at the moment. I am not feeling sorry for myself because I just don’t have the energy for it. All I want to do is sleep, sleep and actually feel like I have slept. Instead of sleeping 12 hours and still feeling like I haven’t slept.
My joint pain is up through the roof. Nothing is making a dent in it and I have quite a pharmaceutical arsenal to choose from. My hands are stiff and sore all day everyday. Typing is becoming more and more difficult. I am at a loss of what I can do. I generally feel so awful all I want to do is hide and never emerge from under the covers until the pain has gone.
I am too sick to pretend everything is ok like I normally do.
I keep pretending to everyone that I am feeling better than I was the day before. I’m not I am just getting a little more used to feeling this crappy for days on end.
As typing is currently causing me too much pain, this will be my blog post this week.
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 Medicine is an area where women are regularly subjected to outdated attitudes.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.
Unknown origin circa 1880
This is one of my favourite quotes and I use it quite a bit, especially if anyone tells me that they are sweaty. I have been glowing quite profusely since 2006, it was one of my first symptoms that manifested well before Ptosis in 2007.
I have been sweating, glowing whilst sleeping for quite some time. It doesn’t happen every night or during every afternoon nap but at the beginning of the year it was so bad I was changing my pyjamas three or four times a night and sleeping on a towel. When I arose from my bed there would be a body shaped sweat (glow?) mark on my bedding, where the sheet was dripping wet. I also found I glowed (ha!) in weird places. The back of my neck, legs, between my breasts and my stomach. What was even stranger is that I appeared during this time to lose my ability to sweat during the day.
|Blood glucose testing strip, monitor, finger pricker, lancet|
|Blood glucose tracker|
Having finally captured a night sweat in progress I was elated to have caught the reason why this was happening. One of the clues to this possibly being the cause of night sweats was my overly sweaty glowing neck. Even if I just had a little night sweat and not a full-blown attack my neck would be soaking wet. I now needed to prove that reactive hypoglycemia was the cause by completing an oral glucose tolerance test.
|Tracking the glucose tolerance test
My plan was to check my blood glucose levels hourly, you can see the results in the above tracking document. Two hours in I started to feel unwell, my blood glucose level was 4.1 still within normal however having tracked my levels for a few days I knew that at 4.1 I could feel very shaky and start to feel like I was having a hypo. I have hypos induced by medication before and it always starts with a feeling of shakiness. Over the next 30 minutes my symptoms just got worse, I was physically shaking, feeling a bit disorientated and just pretty crap. Out of curiosity I measured my levels and they had dropped to 3.7. At this point my husband was begging me to end the test as I had proved I was suffering from reactive hypoglycemia ( my blood sugar levels drop after consuming high amounts of carbohydrates / sugar). I was pretty stubborn and continued for another 30 minutes. Even though my blood sugar levels had started to rise, I still felt horrid so ended the test by having tea and toast. Within 20 minutes there was a world of difference although I felt very drained for the rest of the day.
Due to illness that required antibiotics I ended up chatting to my gp last Friday where I explained to him what I had been doing regarding tracking my blood sugar and proving reactive hypoglycemia. He was quite impressed at my detective work and agreed with me that going into hospital on 14th July would be a waste of resources. I was relieved he wasn’t prepared to write this off to “just PoTS / Dysautonomia”. He advised me that if my hospital consultant didn’t refer me to an endocrinologist, he would. He is concerned that either my pancreas is sending out too much insulin or that my liver isn’t sending out glycogen when my blood sugar levels drop. Whatever is causing this needs to be identified. For the time being he has advised me to eat high protein, low carbohydrate foods and to eat something before bedtime that will release carbohydrate slowly whilst I sleep. He did suggest eating steak before going to bed but that was taken off the table when I told him I was a lifelong vegetarian.
Dear Party People,
You guys probably don’t realise that this summers party was the only thing that has kept me going since my health took an unpredictable turn (again). There were some days over the last few months, I seriously wondered if I could cope with what my life had become. The party was the light at the end of the tunnel and your company was needed for that night, so that I could just be Rachel and not hubby’s disabled wife.
These parties give me something to look forward to, plan down to the last detail and try out new punch recipes. Even on the darkest day hubby could make me smile by telling me that one of you had said in passing how very much you were looking forward to it.
We are very lucky to have such special friends, we have one that was taking part in a bike race the following day, who turned up straight from work in his uniform to make sure he saw us. One stayed until well past midnight despite being in a show jumping competition the following day. We had others who came before they went to work for their night shift or after they had finished on a late shift. Another special young lady spent the first 4 hours of her 18th birthday celebration with us. My closest friend despite being in agony with a back injury came (and spent more time than she should have with the pain being etched on her face). It takes a lot of effort to do this and I thank you for it.
Yes I am now exhausted and hubby is in the midst of a two-day hangover. It will take me weeks to get over that one night. It was worth it just to spend time with you all and just be me, not my condition. Most of the time when I see people it is because I have a medical appointment. There, I am no longer a person but a long list of medical complaints. To be seen as more than that for just a small amount of time is incredibly freeing. I feel in those hours almost normal again. I don’t mind being exhausted when I have done something I have wanted to do, it’s when I am exhausted for no reason I get wound up. It’s the kind of exhaustion that no amount of sleep will cure.
Unfortunately my mask slipped during the night and a couple of you saw my expression change. One of you asked if I was alright, you thought I was angry or pissed off about something, I answered truthfully I had forgotten to take my night-time medication and I was now two hours without painkillers in my system. I corrected it straight away, what you will never know is that it will now take me a few days to get my pain levels back under control. It’s not a case of popping my pills and everything being ok. Those pills have to be absorbed by a stomach that sometimes likes to go very slowly. I would be without medication in my system not for just two hours but anything up to six depending on how my stomach decided to play it. Luckily I also have oramorph that I can top myself up with but it’s not the same dose as my standard morphine.
I love the way no one bats an eyelid when I have a hot water bottle shoved down the back of my jeans on a warm summer’s night. During previous parties I have sat with a heat wrap on my back. I do not shove it in your faces, I am quite discreet yet when my friends get up for a drink they will ask me if my hot water bottle needs refilled. So many people chose to ignore the fact that I am sick and whilst my friends may not understand what is wrong with me, they will show me simple kindnesses like that which make me realise they care. Small things like this go a long way.
One of the new people to be invited to our get togethers ( we have a small group that are always invited) asked me on Saturday night why I go to so much trouble to throw these parties. I told her it is a thank you to those who come and visit me or to say thank you to those who look out for my husband. My hubby, as regular readers of my blog will know, suffers with anxiety and depression. He had these conditions long before I got sick but as those of you with chronic health conditions will know, the stress we can cause our loved ones often leads them to have mental health issues or exacerbate the problems they already have. As a carer (which hubby is) it is important that you have support from your own wider family and friends. My husband is very lucky that he has a very good group of friends who really look after him. If they think he is stressed (more than normal) or just generally not himself they will contact me. Our party is our way of saying thank you to everyone who provides us support as a couple as well as individually. We never take your friendship for granted, we hope you know that.
I always think it is the sign of a good party when your guests are asking during the evening when the next one will be held. The date is already set in the calendar and again it gives me something to look forward to. I think in an alternate universe I would have been an events planner or wedding planner. There is nothing I like more than working my way through a list and having an event go like clock work. I pride myself on the fact that despite all the barriers and complications that are thrown my way I can still throw a decent party. However I shall let you into a little secret on Saturday morning when I woke up at 6am I wasn’t in the party mood. In fact if everyone had rung and said they weren’t coming I would have happily spent the day in bed. I just had no motivation and felt quite awful. Thankfully as the day progressed I got into the swing of things. Just as well as there was no backing out now.
Behind the scenes before most of you arrived, we had the usual drama of lighting the BBQ, why we have such problems I have no idea. The matches to light the firelighters were useless and kept snapping. Every time a match was struck a gust of wind came from nowhere and blew the bloody thing out. Things got a little heated between hubby and I, unfortunately for about half an hour we were the only thing generating heat. Eventually it was lit and we had managed to do it without a full-blown argument most unusual for us. Things usually get quite tense (it’s me getting stressed) the day of a get together so it was nice that I was chilled out for a change!
There were no other dramas during the party preparation period. The list of jobs had been achieved and I adopted the mindset that you were all here to spend time with hubby and myself, not inspect the house. I know many of you tell me this time and time again but I have become cleanliness obsessed since getting sick and feel that I will be judged if the house is a state when you arrive. I know it’s not you guys, it is me. I thank you for helping me see that you don’t care about how clean and tidy the house is. You would rather spend time with me when I am feeling good, instead of shattered because I have pushed myself too hard.
I apologise most sincerely to those of you who made it through to the bitter end only to be bored to death by hubby’s ramblings about American football. I wish all of you could have heard him singing, in his Frank Sinatra way!
Although I am still in recovery mode from the party, it has lifted my spirits immeasurably, better than any medication could. So I just want to say thank you for coming and thank you for being our friends.