Thursday, 27 November 2014

The Barren Old Maid

**Sarcasm alert, any offence taken is not intended**

Nothing irritates me more than someone, whilst in the heat of a discussion spouting the phrase at me "well you haven't had a child". It's not that it stabs me through the heart, creating a wave of unbearable emotion or sense of loss because it doesn't, my husband and I chose not to have kids. It is the assumption that unless you have popped a child out of your vagina you can't possibly hold a valid point of view on anything remotely to do with children.

This phrase has only been said to me by other women, whom I believe should know better. What if the fact I didn't have children was not simply because they don't fit into our plans but it was due to us being unable to conceive? Those words thrown at you by anyone are designed to hurt, to point out your failing as a woman to bring life into this world. By uttering this phase you are doing a massive disservice to all women, as you reduce their status whether childless or not to that of a broodmare. There is no excuse for this phrase to be bandied about, it is deeply offensive. I may not have children but I was a child once and I am part of a  loving family. Does my not having children negate my 41 years of experience? Can I not as an outsider provide a useful insight? Why is my opinion less valid than another woman's just because she has had a child?

The first time I had this said to me was during a discussion on social media about the school holidays and the length of the school day. I am in the camp that says the kids have too much holiday and the school day of 9am-3pm is too short. My opinion is based on my experience in the workplace, so please hear me out before dismissing my argument, just because the stork hasn't and will not be visiting my home. 

When I worked many years ago I held the position of a Manager part of my role was to supervise the work experience kids. It was a job I hated purely because the young teenagers that came to us had the preconceived notion that shop work is easy. Most of them were too immature to realise that in 2 years time when they applied to the store for a Saturday job their performance whilst on work experience would be taken into consideration. 

Most of the students were ill-prepared for a full days work, I expected them to complete a full working day 7.5 hrs - 9 hours in the building when you factor in their breaks. Most of them couldn't cope with only two 15 minute tea breaks and an hour for lunch. The majority of my day was spent checking the canteen or back offices for students dodging the work we had planned for them. I will be honest I really loathed work experience week.

A common complaint amongst business leaders (in the UK) is that our school leaver's are ill-prepared for work. I have to say I agree about some of them being ill-prepared for work, I think the majority of it is due to the school timetable. Very few people work Monday to Friday 9am till 3pm, most will work a 9-5 job and many people are now working weekends. In private schools (fee paying schools for those of you in the USA) they generally have much longer days than the state schools do and some of them also hold lessons on a Saturday morning. I am not suggesting that 4 or 5 year-olds do a 9-5 day. I think the school day should be gradually increased in length from year 9, as this is when pupils start choosing their GCSE subjects. Longer days would ensure more coverage of the subjects chosen and extra help for those struggling. Just my idea based on my limited experience with children.

I don't want to bang on and on about the length of the school day as the school holidays are also an issue for me. What job (other than a teacher or university lecturer) has the amount of holiday school children do? Most people have the legal minimum holiday in the UK which is just 4 weeks a year. Again I have to ask how are we preparing our kids for the world of work? A lot of the Saturday kids (what we would call our young workers) were shocked that they would only get 4 days holiday a year (they were contracted to one day a week so their holiday worked out as four days). You could see them thinking "shit" and they were working just 8 hours a week. Many of them had the added pressure of being at school during the week whilst they completed their A-levels however as adults we balance many responsibilities outside the workplace. Learning how to do this is just part of growing up.

After posting something similar to my points above as part of the discussion, I was informed I was destroying "the family", it was easy to see that I wasn't a parent as no parent would ever agree with me and because I hadn't had children, I would never understand. There were men who shared my point of view, yet I was the one singled out as a failure to my gender due to my childless status. The poster got nastier and nastier claiming that I must suffer from all sorts of personality flaws because I didn't want children. She saw my childless status as a threat to her world, as if no woman should ever be able to choose not to procreate. All that abuse didn't bother as it was clear from her tirade she was a nutcase, it was the phrase "well you haven't had a child" that really punched my buttons and still does. 

I didn't bother replying once she got into full swing. If I had I would have pointed out that I do understand because guess what?  I once was a child, bored out of my mind during the long summer holidays. I also know that when I started working 9-6 on a Saturday, it exhausted me because I wasn't used to that length of day. I had never been at school much longer than 9-3. those extra three hours at work were a killer. Obviously my job involved a lot of physical activity, I stacked shelves very different to sitting in lessons. If the school day had been longer it wouldn't have been such a shock. I also hated the length of the summer holidays, it was boring and once back at school it would take me a few weeks to get back into the swing of it. So please don't tell me my opinion isn't valid because I haven't gone through the birthing and parenting experience.

There are lots of things that we all have no direct experience of yet are allowed to hold opinions on. Just because I haven't given birth doesn't mean I can't hold an opinion. I can empathise, sympathise and be compassionate, I will not have experienced it but I will always try to understand where a parent is coming from. I will hold my hand up I have not lived through sleepless nights due to a colicky or teething baby or any other aspect of having children. 

I don't know what is like to be severely sleep deprived and be responsible for a child all day. I imagine its pretty tough and nothing I experience in my life will ever come close to it. I can't offer any advice other than the things friends have told me about. Even though I haven't been through what a parent has I will never dismiss your opinion out of hand because you are "just a parent". I feel we both have things to offer because we both hold valid opinions without descending into abuse.

It is only in the last few years I have had the "well how could you understand you haven't had a child?" nonsense said to me. Until I hit 39 no one had ever suggested to me that my opinion wasn't valid  simply because my uterus had never been used. It is funny how women judge other women, no man has ever suggested to me that my opinions are suddenly obsolete because I didn't hear my biological clock ticking. 

It is a phrase that immediately makes me see red because it suggests I am a barren old maid, it assumes a woman's worth is only measured against the number of offspring she's popped out. Yet we hear all the time in the media, women expressing how they feel they have the ability to be so much more than "just" a mum (their words not mine), how they feel they have lost their identity since becoming a mum and want to prove themselves outside the arena of parenthood. Yet these would be the same women who will tell me that because I am childless, I wouldn't understand.

Despite my age (41) I am still asked if my husband and I are planning to have children. I usually answer that ship has sailed. I then get the *sad* look, as if there is something wrong with me and that is why children haven't happened. Let me be clear being childless was a conscious decision for my husband and I. It is not something we pine for, I haven't got a maternal bone in my body. My husband openly admits he doesn't want children because he doesn't want to share me. So why are we treated as if we are something to be pitied? I am happy with my choice, so I really don't understand that if it is something we have consciously chosen for our own lives, why we are treated as some kind of oddity? 

It is assumed if you don't have children you are inherently selfish however I know quite a few selfish individuals that have kids. Selfishness is not a personality trait that is found only amongst the childless. It is also assumed that you don't like children. Again wildly inaccurate, I like children but I also like the option of giving them back to their parents when I have had enough. I love my nephew dearly, I tell my sister regularly he is the greatest present she has ever given me. My heart melts when he speaks to me on the phone. I boast about his latest achievements with my friends because although he isn't my child he is part of my family, I love him more than words can say and would lay down my life for him, yet I still don't want kids of my own.

My husband and I often joke when we have snapped at the dogs for misbehaving that we would be shit parents. The dogs in some ways are our surrogate children. People with children may find that offensive, comparing our dogs with a child but that is how precious they are to us. I always remember chatting with my paternal grandmother about the dogs, when out of the blue she openly admitted to me that if she had owned a dog before she had children, she wouldn't have bothered with kids. It made me roar with laughter however had that been the case I obviously wouldn't be here writing this blog post.

It really grinds my gears that men are not judged on their fertility or child status when offering their opinions. If a man offers an opinion about an aspect of childhood / parenthood, rarely if ever is he told "well you haven't had a child". I wonder if this is to do with the fact that men's fertility is  seen as never-ending and women are being constantly reminded that they are up against a biological clock? Men do not diminish each others opinions just because the other man has not impregnated a woman. 

Obviously as I am not a man I don't have any first hand experience of this. I do have lots of male friends and none of them has ever complained to me that they have had their opinions dismissed because they haven't experienced the joy of parenthood. Why is this phrase being used by women against other women?

Everyones idea of normal is different, my normal is a life without children, your life maybe one filled with them. Regardless of whether or not you've had children, your opinion as a person, as a woman is valid. I am not a barren old maid because I decided not to have kids. I am allowed an opinion even on things that I have no experience of, the same as you are. To utter the phrase "Well you haven't had  a child" to another woman is abusive, thoughtless and reduces women as a whole to the position of a uterus only. We are all so much more than that. 

We fight gender inequality every day in every aspect of life why do we have to fight each other as well?

Thursday, 20 November 2014

"Out sicking" the sick

Before I start my blog post I have to announce that from now until the new year I will only be posting once a week on a Thursday. It has been a tough decision to make however with my health taking a very sudden and dramatic nose dive, I currently don't have the energy to produce two posts a week. I hope you will understand that this decision wasn't taken lightly but I think it is really important that for the next 6 weeks or so, I focus on putting myself back together.

I have spoken at great length before about how social media and forums for the chronically sick can turn into a bit of a competition and that is why I have so very little to do with them. However this competitive illness malarkey seems to be spreading outside the chronic condition arena. It is now the norm for the "norms" to inform everyone via social media, that they were sicker, had more medication, had to go to hospital / have an operation / took some time off work (please delete as applicable)  and were finally able to conquer and overcome this illness in a way us long-term "pathetic" sick people can't.

For the last ten days I have been suffering from a really nasty virus. The kind that knocks you back months, the sort of virus that as you start to feel better you find it has drained any energy reserves you may have built up previously. I am struggling with even performing the most basic of tasks such as walking (my legs have appeared to turn into jelly) and typing (why typing is an issue I don't know, as soon as I start to type my hands are shaking). I would hazard a guess that I haven't been this weak since I collapsed in 2008. This was my physical condition when I was discharged from hospital and it took weeks, if not months to get any strength back.

 I am not however allowed to mention this on social media because to do so would incur the wrath of those who aren't chronically sick. You see I have used up my sympathy quota and I am simply not allowed to say that I have caught the latest bug doing the rounds. Plus being "normal" sick on top of chronically sick means I am hit much harder than everyone else, making my symptoms so much more dramatic and longer lasting than those who are "normal". I must conform to the image of the chronically ill, the stoic, never talking about it and soldiering on version. Lets face it no one talks about chronic illness, is it any wonder why? To openly talk about the issues you face with anyone other than close friends or family leaves you open to abuse. So when I do get a virus / normal illness on top of what I am dealing with I tend to keep my mouth shut. 

Now not every "normal" person I know tries to "out sick" the sick. It seems to be a definite personality type that revels in the attention it brings. Unfortunately there is one thing that these competitive sickness people don't seem to grasp and that is the difference between a chronic health condition and one of an acute nature.  An acute illness appears suddenly and its symptoms rapidly worsen as in flu, throat infections, appendicitis, heart attack or a broke bone. I am not belittling acute conditions obviously people can die from an acute condition. Also acute conditions can trigger a chronic condition as in a broken bone over time can end up being riddled with arthritis. Acute illness is painful and not to be sniffed at but many people go on to make a full recovery, leading to their brush with ill-health a short-lived experience.

Please let me be clear those that try to "out sick" the sick tend to have suffered with a short-term acute health issue which was relatively minor. I am not including people in this who have had very serious acute health issues. Nor am I belittling anyone's experience of ill-health.

Chronic illness tends to come on over time (I say tends to, as mine and many others came about quite suddenly, looking back I can see there were signs for years). I like the example given here, where it explains that chronic conditions last months if not years. Most chronic illnesses cause pain of some kind and the pain creeps up on you gradually suddenly it gets to a point where you can't remember a time when you were pain-free. It requires medical supervision (if you are lucky enough to get a diagnosis or a doctor that understands it!) and large amounts of prescription medication. Again there is a lot of cross over between acute and chronic illnesses which is why I think many people get so confused.

It's cold, flu and Norovirus season here in the UK and my news feed on social media is full of people suffering from the lurgy. I always leave a message for them that I hope they get better soon because I really do. It is a shame however that courtesy is not extended to me in return. I have written before on how I have to self censor as my illness is seen as "depressing". I try to keep the majority of my health issues on my The Myasthenia Kid page. 

I have noticed that there seems to be a great deal of competitiveness amongst the norms (as I like to refer to them as) when they are sick. Everyone it seems wants to be sicker than the last person that posted about it. I have even seen them hijack each others postings so they can make it all about themselves again. Being the sickest isn't a competition I have ever wanted to win I know many people who are a great deal sicker than me. I am in awe of the way that they live their lives grabbing every moment of happiness they can. I certainly don't want their condition so I can win. There are plenty of things that I want to excel at, being the sickest just isn't one of them.

The competitiveness has even spread to the point where they feel the need to challenge my illness. I have had people who have had awful acute illnesses that I wouldn't wish on my worst enemy try to what I call "out sick" me. What these norms forget is that they got better, I am still living with my condition and will be day in, day out until they find a cure.

The spirit of the competition has spread so much that they like to inform me of the super strong pain killing tablets they have been placed on ......diclofenic / naproxen both NSAIDS. They then try to tell me that these are stronger than opiates, they aren't but nice try. This is what I mean by competitive illness. Due to their belief they have glimpsed at what it is like to be chronically ill they assume they know what it is like. They like to "out sick" the sick and then tell us all how they triumphed over adversity and returned to full health. The insinuation being that if only you had tried harder when you first got ill you would be well now and not addicted to opiates. Their words not mine. It is hard not to greet this kind of tosh with a smack in the face, currently I don't have the energy to do so.

I have even had conversations with people who for very good medical reasons were placed on Tramadol (a synthetic opioid) tell me that they refused to take it because "they didn't want to get addicted" cue *sad face*. I hate that conversation because its implied that somehow they are stronger than I am because they got to choose if they took pain relief or not. What they neglect to understand is that I lived for 12 years with chronic pain. By the time I was prescribed opiates I was beyond having a choice. Well there was a choice, it was either be so racked  with pain that I couldn't get out of bed or have some pain relief so that I had some quality of life. Not much of a choice really.

What annoys me is the attempt to pretend to others that they have glimpsed inside my world and that it wasn't that bad. That their condition was so much worse than mine (and to be fair it probably was in the acute phase) yet they got better, as if my inability to heal my self is some kind of deep personality flaw. This high-handed attitude is incredibly insulting to everyone who deals with a long-term chronic health condition. I don't know if we in the chronic disease / condition community are perceived in this way due to the incessant media coverage where we are either brave warriors battling against our condition or undeserving scroungers / a drain on society?

To be under this intense  pressure to be "well" is akin to living life under a microscope, with your every move being watched. What people always forget is that they only see me at my "best". They don't see me when I have spent the last 18 hours stuck in bed and have taken enough morphine to heavily sedate an Elephant.

I am pleased that those that try to "out sick" me regained their health, I truly am. I will always be empathetic and compassionate towards those who have suffered the blow of ill-health be it via an acute condition or a chronic one.

If you feel the unrelenting urge to "out sick" me, please continue but don't be surprised if I don't get involved. I no longer play those silly games.

Monday, 17 November 2014


Due to being quite poorly with a flu like virus all last week I am very sorry but I haven't been able to put a blog post together. Please accept my sincere apologies.

Most of the last week has been spent in bed, it is only today Sunday 16th November that I am starting to perk up a bit. Normal service will be resumed on Thursday.

Thursday, 13 November 2014

5th November

"Remember, remember the fifth of November.
 Gunpowder, treason and plot"

 The 5th of November or otherwise known as Bonfire Night, Firework Night or Guy Fawkes night in the UK is an event that fills many pet owners hearts with dread. Many of you outside the UK will be aware of this English verse due to it being used in the film V for Vendetta however you maybe unaware of its origin and why the 5th of November is an important date in Britain.

The 5th of November has been celebrated with bonfires and fireworks in the UK since 1606 when a law was introduced in the UK to observe the day in 1605 when the plot to blow up the House of Lords and assassinate King James 1st was thwarted. Guy Fawkes was one of a group of conspirators that had set the explosives under the House of Lords and was found next to several barrels of gunpowder. Hence why the event is also known as the Gunpowder Plot. On hearing the news that the plot had been thwarted Londoners set bonfires to celebrate and it has now been celebrated in this way for hundreds of years.

That is a very simplistic overview of Guy Fawkes night, there are deep religious undertones to the event with King James 1st being protestant and the conspirators being Catholics. Some people celebrated the attempt on the King's life and others celebrated the foiling of the plot. Nowadays unless you live in a very sectarian area of the UK such as Northern Ireland and parts of Scotland the history is something you learn briefly at school and holds no particular resonance for you. For most people the 5th of November is a time for family get together's, fireworks in the back garden, building bonfires or attending organised events.

The subject of fireworks is quite emotive in the UK amongst pet owners whose animals are severely stressed by the noise. I am not anti fireworks as some people assume I am. I am anti unregulated displays and inconsiderate people setting them off at all hours between the time that Fireworks go on sale in October until after the new year. One night a year I can plan for and try to ensure my dogs are kept as calm as possible. Nights when I don't know if they are going off or not cause me a real problem. Even if there were several nights during the year where fireworks were set off at organised events I could plan for them. However what will happen now is that every night as soon as it gets dark my 10 year old Weimaraner Mollie will become incredibly stressed in anticipation of the loud noises that the night-time will surely bring.

I am extremely unlucky in the fact I have three dogs who become stressed by loud noises - strong winds, thunder and lightning will also trigger a response but fireworks should be something I have some control over. On the 5th November for the first time I posted a picture of Mollie on my personal Facebook page. There's nothing unusual in that you might think. However the picture showed just how stressed she was, lying in the bottom of the shower cubicle (we placed some throws and cushions in there to ensure she was as comfortable as possible) tongue hanging out as she panted with stress and a look of sheer terror on her face. A happier dog than Mollie you would be hard pressed to find, she has a tail that wags constantly - even when she drinks. You only have to softly call her name and you can hear her tail thumping against the floor or whatever she is standing next to. Her happy demeanour changes beyond recognition on  the night of November 5th.

My husband wasn't quite so careful on Facebook with his language regarding his thoughts on fireworks. Although I completely agree with his sentiments his language was highly emotive and to some offensive. Those whose pets suffer the same way ours do, rushed to support him. Those who didn't took offence, my husband really couldn't care less what people think of him. I like the fact he says what he thinks and admire that quality in him. To change people's minds however you need to be less emotive and try to reach a compromise. A difficult thing to do when three out of the four things he loves most in the world are suffering in the way they were on the 5th November. What we both can't stand is that we can't tell our dogs it is going to be OK, that there is nothing to be scared of. Not being able to comfort them is distressing and the older they get the worse they react to the noise.

We have tried many things to try to relieve their stress. We've bought D.A.P diffusers which send out calming pheromones ( it's the smell of a lactating Dam) even after following the guidelines to the letter it did nothing (it also didn't stop them having separation anxiety either). We've tried herbal remedies, noise  exposure therapy which involved playing a DVD with firework noises on it at a low-level. They never reacted to the noises at any level because they sussed out early on that they were coming from the stereo. My dogs aren't stupid and Weimaraner's are known as the dogs with a human brain.

We are careful not to change our behaviour pattern and become anxious ourselves during storms or firework season. Many people have suggested to us that the dogs are picking up on our stress levels, which if we were stressed out I would accept. I can not be blamed for a dog being stressed out due to thunder and lightning when I have slept through it until a 40 kilo dog has jumped on me. I love storms, I always have done, whenever there is a storm I sit at the back door and watch it. As I said we have tried everything!

Travis our first Weimaraner was exactly the same with fireworks and storms. Our vet at the time was happy to provide drugs to sedate him due to his extreme levels of anxiety. Unfortunately, for us the vets are no longer happy to provide sedation and I can't blame them. A sedated dog has to be watched like a hawk so that they don't injure themselves. Travis like our other three would fight the sedation, he would no longer react to the fireworks but would insist on bombing around the house like a mini drunk. The sedation would last hours and would mean that one of us would have to for go sleep whilst he was supervised. I can't imagine how difficult it would be to keep an eye on three of them under sedation and nor would I want to sedate Frankie and Willow. Although they are frightened they aren't as frightened as Mollie. Each year I wonder if she will live to see her birthday the following day or if she is going to drop dead from a heart attack. 

The stress that fireworks cause pets is what those who insist on setting off fireworks in their back gardens don't see or refuse to acknowledge. I posted the picture on Facebook to show them what a stressed dog looks like, not to say Fireworks should be banned as I don't believe that. I just think that fireworks should not be sold to the general public and should only be used in licensed organised displays.

To write this piece I reached out to my friends on Facebook whose dogs were also suffering due to it being firework season. Laura was kind enough to tell me about how her dog, pictured below. Chester is a three-year-old Sprocker (Cocker spaniel & Springer spaniel cross) reacts badly to fireworks.

Chester by kind permission of Laura D.

"Chester is very scared by fireworks, he has to hide in small spaces normally in cupboards or under beds. Despite being prescribed anti-anxiety medication from the vets, he got so stressed on the 5th November he started vomiting, heavy panting and shaking. A fellow Sprocker owner told me that fireworks had induced seizures in her own dog. Chester won't go outside when fireworks go off and has now developed anxiety about when it gets dark, even if there are no fireworks going off."

On the 5th November my news feed was filled with pictures of dogs, of all shapes and sizes that were terrified by fireworks. There was a picture of an enormous German Shepard that had crammed itself under a dining table, a Rottweiler that was hiding under the stairs. Yet there was very little sympathy shown for these dogs or their owners by people who either didn't have pets who reacted to fireworks or were non pet owners. We claim in the UK to be a nation of animal lovers yet when it comes to fireworks people seem to ignore the effects on pets or wild animals.

It's not just the stress that fireworks cause to animals that bother me. Many people including children are seriously injured by fireworks every year. The Eye Care Trust  states that each year in the UK ten people lose their sight permanently and 300 people suffer serious eye injuries due to fireworks. The Royal Society for the Prevention of Accidents (ROSPA)  states there were 990 accidents in 2005 due to fireworks, unfortunately this was the last year that the figures were collated by the Department of Trade and Industry. The NHS Choices website provides some information behind why fireworks cause so many accidents, providing facts like Rockets can travel at speeds up to 150mph and that the majority of accidents involving fireworks happen at family gatherings or private parties. These are all facts that shouldn't be ignored. Fireworks are not only stressful for animals but also very dangerous. Why on earth would you sell explosives to the general public? Why shouldn't they be limited to professionally organised and licensed displays? It just seems like common sense to me.

Whilst researching this blog post I came across an interesting article in The Telegraph which talks about the environmental damage that fireworks cause. When a firework is released it sends out a shower of toxic chemicals like Aluminium and Barium. For more information on the health hazards to humans from fireworks read this article on the BBC website, it is a real eye opener to what we are willingly polluting our environment with. Not only are these chemicals harmful to humans but they are also polluting water courses and the soil. These were elements I had never even considered before writing this post.

I am not a killjoy, I actually want to reach a compromise with those among you that love fireworks. I can put up with one or two nights a year of fireworks being released although it comes with consequences for my dogs. Many other countries around the world have limited or banned fireworks at private parties. My issue is that from when fireworks go on sale from October fireworks will be released every night from then until after the New Year. Due to not knowing when these fireworks will be released my dog's lives (and many other pets in the UK) will be made a misery. Mollie like Chester associates the dark evenings with fireworks and lives in constant fear during these long nights. If fireworks were just released on 5th November and New Years Eve at organised displays, I am sure that many of us with pets could cope. The benefit of organised displays would also be that injuries due to fireworks would be reduced and so would the environmental impact. To me and many others this seems like a sensible way forward.

If like me you share this view please sign this e-petition, banning the sale of fireworks to the general public in the United Kingdom.

I am not trying to destroy over 400 years of tradition in the UK, I am trying to find a compromise.

Many thanks must go to Laura D for sharing her story and the picture of Chester.

As always thank you for reading.

Monday, 10 November 2014

10 things I have learnt since becoming chronically sick

This is just a quick post as I am still recovering from my birthday celebrations just over a week ago. I have spent most of the last week sleeping and then this weekend I have suffered a horrific migraine, which left me limited to the amount of time I have been able to use a computer screen.

 10 things I have learnt since becoming chronically sick

1. If a person wasn't a nice person before getting sick the chances of them suddenly becoming a nice person once struck down by illness is remote. Nice people and horrible people get sick, it's the way of the world. Becoming ill doesn't change someones basic personality.

2. Just because you go out of your way to help someone who is also chronically sick doesn't mean your efforts will ever be acknowledged. Since getting ill I have helped many people with things like getting a diagnosis, employment law issues and disability discrimination cases. 99% of the time the people I help are extremely grateful for the help I give them. However when you help someone and you get no acknowledgement of the time and effort you have spent it is a real kick in the teeth. This is especially true if the person is also chronically sick and knows how physically / mentally demanding its been for you to help them. It is very hurtful but it will not stop me helping others.

3. Don't expect people to understand your illness. Even if the person suffers with the same condition as you, their symptoms and physical / mental limitations will be different to yours. People within the chronically sick world seem to forget this and will happily sit in judgement of others. I never expect people to understand my illness. Over the years I have conceded defeat on trying to get others to understand my illness because my own understanding of my condition is limited. As soon as doctors start talking about genetics, parasympathetic and sympathetic nervous systems I am lost. It is as if my brain will not accept the information. If I don't understand what is going on with my own body I shouldn't expect others too.

4. Don't expect others to actually believe you are sick. This is a hard one to accept. When I first became ill I felt like I had to prove how sick I was to others, despite having a diagnosis and medical reports that proved I was ill. People who you have known for a very long time will either believe you or not. All that is important is that the people who love and care about you support you and know that you are ill. I have had many people suggest that I make my condition up, that I love being at home all day and not having to work. Nothing could be further from the truth. People will believe what they want to believe and there is nothing I can do or say that will make them think differently.

5. Choose your battles wisely. Again this one was a hard one to learn. Initially I felt I had to fight every battle, getting a diagnosis, getting people to understand my condition, making people believe me. The only thing that matters is your health and not whether or not someone who hasn't seen you in years accepts that you are sick. Getting a diagnosis and treatment is the only battle you should be fighting. All energy initially should be reserved for this, the rest will sort itself out as you go along and you will accept that some people aren't worth fighting. I wasted a lot of energy I didn't have to spare when I first got sick on battles that really weren't worth fighting.

6. You will lose "friends" when you get sick. This is one of the hardest things I have had to accept since getting sick is that people walk away. I had many people I was friendly with at work only one person has stuck by me since getting sick. People get bored, don't know how to deal with illness or on a basic level lack compassion. I have written on this subject extensively in the past, so I won't bore you with my thoughts on it again.

7. Some people will assume if you use a wheelchair that you are mentally deficient. It never ceases to amaze me that people see my wheelchair and automatically assume they should direct their questions about me to the person pushing it. Before I needed my wheelchair I never made those kind of assumptions about people who used them. For me this is a very backward view of disability which really needs to be challenged.

8. It is possible to be happy, even though your health is crap! This was an important lesson for me to learn. After a manically busy  career in retail  the thought staring at 4 walls all day everyday for the rest of my life at times made me feel suicidal when I first became ill. I realised early on I could cry all day everyday and rant at the world or I could take charge of my life and find things to do that made me feel fulfilled. It would have been very easy to decide to give up and become a negative, angry person. I decided that if I wanted to keep people in my life I had to lose the negativity. No one wants to be around a negative ball of rage 24/7. I had to find the simple joys in life, reading a good book - my  free time had been severely limited before I became ill, becoming active in on-line communities, creative writing, blogging were all things I did to help me feel like I was contributing to the world and in turn gave me pleasure. Find things that you can do that give you back some control, a sense of accomplishment and pride. It can be anything you want it to be but don't give in to negativity. I will be honest I don't manage it 100% of the time but I never stop trying.

9. Some doctors are idiots. When I first became ill my attitude towards doctors was very positive, seven years down the line that is no longer the case. Some doctors like to pretend to their patients that they know everything, even though it's not possible for one human being to know everything about medical science. What I really dislike about some doctors is their unwillingness to acknowledge that they don't know the answer. Unfortunately I have met many doctors who believe that anything they can't understand / diagnose means that the patient is suffering from a psychological issue rather than a physiological one. So many of us with Dysautonomia and Ehlers Danlos Syndrome have had a diagnosis of somatiform disorder rather than the correct diagnosis because a doctor was out of their depth and wouldn't admit they lacked knowledge of these conditions. After all my own gp back in 2010 told me I couldn't have EDS because it was too rare and Postural orthostatic tachycardia syndrome didn't exist. Yet a year later I had a diagnosis of both, my gp was happy to label me with a mental health disorder rather than give me the tests I needed to prove what was wrong with me. Once you accept some doctors are idiots you are no longer disappointed or left disbelieving yourself.

10. Keep your sense of humour! I am extremely lucky that I grew up in a family that could find the humour in any situation, no matter how dark it was. Our gallows sense of humour isn't always understood or appreciated. People don't understand how my sister and I can be in absolute agony yet still be cracking jokes. It is our coping mechanism the people closest to us know that when we stop cracking jokes then that is the time to worry. Things can feel very dark when you first get sick by keeping your sense of humour and laughing in the face of adversity it can prevent you being absorbed by the horrible things that are happening to you. I have laughed / cracked jokes before intimate examinations - it's always hilarious watching the medical staffs faces as they never know how to react! Our family also thrives on sarcasm and people often struggle to understand that we are being sarcastic not serious. 

I could probably add many more and make it 20 or 30 things I have learnt and I am sure you can add your own suggestions to these.

As always thank you for reading.

Thursday, 6 November 2014

Post party blues

It was my birthday Saturday and I am still recovering from the small party we held. Add in a trip to my home town the day before which was an hours drive away and you have an exhausted Rachel, for days on end.

I will admit I ended up with a two day hangover due to the amount of alcohol consumed. Sunday and Monday were mainly spent sleeping and downing fluids like there was no tomorrow. I rarely drink these days, one glass of wine is often enough to leave me slurring my words, so imagine my surprise on Saturday night when I seemed to be able to drink copious amounts without it having its usual effect. I had made my favourite punch Malibu Earl of Paradise Punch recipe here. My friends say this punch is pure evil because it tastes so good but leaves you with a dreadful hangover because you don't realise how lethal it is. It has become a firm favourite for our gatherings and due to the time of year when we hold our parties I tend to substitute the fresh raspberries with frozen ones, I just make sure they have fully defrosted.

The friends that visited me Saturday night will never see me in the recovery phase. I sometimes wonder if its worth it, I am now 41 and a night partying would take its toll even if I was 100% healthy. However having nothing to look forward to all year and not seeing anyone is not an option. On Saturday night our guests were already asking us if we will be holding another summer gathering like we did this year. The answer is yes because I need something to look forward to during the year. These get together's are the only time that I see everyone and when you are chronically sick it is sometimes you that has to make all the arrangements. I don't mind this as our parties have become something of what we jokingly call a "hot ticket", so few people are invited that it has become very special to those who are. Hubby and I find it hard to get our heads around but it's very flattering.

I hurt like hell, EDS (Ehlers Danlos Syndrome) is flaring out of control, every single joint from the base of my skull down is throbbing. My fingers have swollen, typing this is a bit of a nightmare due to hitting the wrong keys. Thank goodness for the grammar and spell checker or this wouldn't make much sense at all. My dysautonomia symptoms are flaring up also, due to being so tired I am finding it very difficult to control my body temperature and I am feeling very breathless. My body is just letting me know that I have pushed myself to the absolute limits and to expect a roller coaster ride for the next few weeks whilst I get back on an even keel.

Please don't misinterpret what I am saying I don't feel sorry for myself, I feel angry. I am angry that this condition will not give me a break just for a little while so I can behave like a normal person for a few days without demanding pay back. I was already sore before the party began. I was downing pain medication like it was going out of fashion just so I would make it through the night. I made it through but now I am left with the consequences, hence the title of the post. Trying to be normal is a tiring business.

Many people don't understand how I can say that I am so sick yet host a party or travel to my home town. What they don't realise is that it only happens once or twice a year and it takes a month or more of preparation. For two days before my trip to visit my parents I up my fluids, salt tablets and fludrocortisone so that I am better able to cope. The day of the party I rest as much as possible and again drink lots of fluids particularly sports drinks to ensure I am fully hydrated. For the month prior to the party I have a rest schedule that I stick to religiously. Even with all these measures in place enjoying myself comes at a high price and the one thing that really annoys me is the judgement of others within the chronically sick community.

I always get the blues after a period of social activity, it never happens after medical appointments it just happens when I have seen friends or family. The days seem so long and empty afterwards that it makes the isolation seem much worse. Most of the time I can cope with it but always after a gathering it just seems to amplify how very alone I am. Its silly really as hubby is on holiday this week as we both knew how very ill I would be. So technically I am not alone but I am not in the social whirlwind that was last week either. Believe me I am in no fit state to be receiving guests at the moment however it doesn't stop the longing for some social interaction. It isn't until you are reminded of what its like to have some company when you haven't had any for a while that it really brings home to you how isolated you are. The next few days will be hard until I begin to adjust to it again.

Monday, 3 November 2014

No blog post - Sorry!

Due to mine and Hubbys birthdays falling on consecutive days and with us both thoroughly enjoying ourselves, I must apologise for life getting in the way of todays blog post. We have had a long weekend of celebrations and I am thoroughly exhausted.

So today Monday 3rd November there is no post normal service will resume Thursday 6th November.

Thank you