Thursday 26 November 2015


There is currently much excitement in The Myasthenia Kids household this week, as our delayed birthday party is happening this weekend. This year we have changed things up a bit and decided to throw a fancy dress party, I am sure lots of pictures will follow.

Last time I wrote about a party, I received a rather negative comment on my blog. At the time it really hurt, now I just laugh at the fact that someone felt the need to be so negative. How can you judge someone's life based solely on one blog post? Apparently on the internet this can be done with wild abandon, in the form of Trolls.

This week's blog post was inspired by a fellow blogger who had received her first trolling.

I have been trolled on Twitter when I questioned our current Government's record on the NHS and the fact my mum had been quoted a waiting time of 18 months for urgent spinal surgery as she was losing the ability to walk. Twitter is great because you can either mute the troll, meaning you can no longer see anything that they tweet about you or you can just block them. The same can be said of Facebook, if people are being nasty or just rude towards you, just hit the block button and in cyberspace or at least on Facebook this person no longer exists. 

When you publish a blog things can be a little more tricky. You want feedback from your readers however you don't want to be trolled and have their nasty comments at the bottom of your post for the world to see. Many bloggers use a filter so that they can personally approve any comments made about their post. It does make things a little more difficult for those who want to leave a comment, who depending on your blogging platform may need to set up an account before they can leave feedback.

There is a massive difference between a comment you may not agree with and a troll. A troll delights in being nasty, in making you doubt yourself. For example they may state that your blog is a cure for insomnia, that you aren't really disabled, you are a benefit scrounger. People have different opinions and the majority of grown ups can accept that. When I say X,W,Z help me a genuine comment my say they've tried them and have had no success. As bloggers we know the difference between a genuine difference of opinion and someone who is being a twat (sorry for the language but I feel it's needed). Twats or Trolls as they like to be called just leave comments to cause upset, arguments or to make you doubt your own ability. They add nothing to the blog post other than their own vitriol.

Until I joined the blogging world, I thought trolls were something that lived under a bridge and demanded payment from those who tried to cross it. 

A troll's main purpose in life is to illicit a response from the person that they have been abusive to. There are forums and chat-rooms devoted to trolls who compare notes on their latest conquests. Those who create the biggest response are held in the highest regard, with no thought being spared to those whose lives they may have impacted. Trolls do not provide a helpful critique, their sole purpose is to be as negative as possible, with some of them threatening violence towards those with differing opinions from their own. Luckily my troll was a little more reserved, simply questioning how sick I was because if I was sick I wouldn't be able to hold a party.

I didn't publish the comment, I wasn't as brave as her. At the time it, cut me to the quick. The comment basically went along the lines of "how can you claim to be so sick yet throw a party? I am sick and I know I couldn't do it as it would take so long to recover from."  It was so long ago now that I can not remember the exact wording of the comment but it had turned what had been a fabulous party into an event that was tinged with negativity for a few days. I felt that I was a fraud because I had enjoyed myself. What the troll didn't know and possibly wouldn't actually give a toss about was the fact that I had put myself on a regime of enforced rest for the month prior to the party and for however long it took me to recover afterwards. They also had no idea that I have an awesome group of friends who don't expect to be waited on hand and foot. They help themselves to drink and food. I have a designated seat that no one else is allowed to sit on, because I need to be comfortable and be able to keep my legs raised. The troll would have also not been aware of my fabulous team of helpers who arrive early and help get the party set up or the fact my husband Jay, is one in a million and does all the cleaning, shopping etc that is needed before the party.

Is it exhausting? Does it wreak havoc on my body? Do I take weeks to get over it? Yes is the answer to all of those questions. Is it worth it to make yourself worse for one night? Hell yes! Does it mean I am any less disabled than the day before I threw the party? No it doesn't, it just means that for two nights a year, I get to see all my friends in one place at one time. To spend a few hours with them to allow myself to feel "normal" whatever the hell that is. Does that mean that I should be trolled? What do I know, I am just another trophy in the trolls hall of fame.

Most bloggers I know, either personally or in cyber space feel that being trolled means you have truly become an accepted part of the internet. You are attracting enough attention from the right sort of people, which means the trolls now see you as a target. I won't lie it can be hard when someone decides that you are a target, I may have just placed a huge bullseye on my blog by writing this post. If I have, it will boost my viewing figures, because you have to view my page to leave a comment. Trolls seem to forget that they boost a blogs viewing figures when they decide to take aim at you. Viewing figures is what bloggers love seeing rise.

The standard advice on the internet for how to tackle trolls is to ignore them and starve them of the oxygen a response would supply them with. I don't engage with trolls. I will be honest it's happened just the once, the readership of my blog is so small that the audience that they require just isn't there.

So regardless of the negativity that my next blog post may generate, the post will be about the party. I will continue, your comment may sting, you may try to out sick me, question my disability but I will always question your motives and your need for attention.

An explanation of what a Troll is

Thursday 19 November 2015

A pill doesn't always make it better

I hate the fact that these days a lot of people hold the belief that when you are sick you go to the doctors or the hospital, they prescribe you medication and voila you are magically cured. It doesn't work like that, in fact it rarely works like that. Many conditions are treatable but that doesn't mean they are curable. The medication merely keeps the worst of the symptoms at bay and at the end of the day the patient still lives with the condition.

A few weeks ago I wrote about the fact that I was suffering with depression, that I had started to take some antidepressants and was starting to feel better. When I said I was feeling better it didn't mean the depression or anxiety had gone away, it just meant I was feeling better than I had been. 

Depression doesn't go away by taking tablets, yes your mood will lift but you can still be left with the issues that are causing your depression. I will always have depression, at some points in my life the symptoms will be very evident often times they won't. It takes work and courage to face the things that are causing you to feel depressed. I am just on the beginning of this journey again.

When I wrote about how I felt when in the midst of depression it struck a few chords with people who read the post. I got some lovely feedback so I want to thank you for that. In my post Rainbows and Unicorns I described the feeling of depression....
When you have lived with depression, you learn the danger signs. They can be very subtle and can take you a little while to pick up on them but they are there. Mine started with getting less and less sleep, then the feeling of sadness crept in, one that wouldn't go away. Then I start spending money to cheer myself up. It is usually gifts for others as if I alone am not enough to please them. Then the self loathing starts with a vengeance, I start feeling like I am a failure because I have put on weight (comfort eating and wacky hormones), ugly because of the new facial hair that has sprouted and the teenage skin I suddenly acquired. A failure in so many ways that my inner voice of criticism literally doesn't shut up from the minute I wake until the minute I go to sleep. It is a lonely place inside my head and it seems so stupid to retreat there but then that's depression for you.

I will be honest I am still having bad days, where my chest aches with sadness and I just don't want any contact with the outside world. I am lucky in the fact these kind of days are only occurring a couple of times a week. As my GP said when I saw him, bad days are normal and he didn't want me to be so medicated that I was numb to all emotions. I don't want that either, it is important to be present and to be able to feel things, be they good or bad. I am a little over emotional at times, I cried on Monday night when Jeremy Vine was saying goodbye to Strictly Come Dancing on It Takes Two, after being voted off in the dance off. 

He couldn't dance to save his life and hubby and I nicknamed him the praying mantis but he was so upset to be leaving the show it really moved me. The clip above is the best dance he did. Finally getting the score of 4 out of 10 from the judge Craig Revel Horwood. I am a massive Strictly Come Dancing fan (Dancing with the stars in the USA), hubby and I watch it together every week religiously.

I am a little more prone to weeping at the moment however I didn't shed a tear at the John Lewis Christmas advert this year but oh my days did I sob due to their advert in 2013!! I still can't watch it but have provided it here for you if you dare!

Here is this years John Lewis Christmas advert, not a patch on the 2013 one. Completely dry eyes in this house!

Going slightly off on a tangent as I am prone to do, (see above! lol!) I wont lie, I am a bit of a "Its fucking November" person when it comes to Christmas. I really do believe that Christmas is a December event only. It maybe my previous retail background that has caused this, Christmas would start for me in September, where I would plan my schedules for my department and Christmas stock would come into the store. I have done the majority of my Christmas shopping but that is only because with a fixed income I need to start in June such is the size of Hubby's (Jay's) family. Oh and another thing I hate is wrapping Christmas presents at anytime leading up to the festive season.

So the bad days are still with me, I had quite a wobble on Sunday. Sometimes things get too much, living this life with chronic illness isn't easy and people's belief that once the condition is diagnosed and starting to be treated, so you must be getting better really grates. I spent Sunday in my head, barely talking and ended up quite poorly, spending the afternoon in bed hooked up to my oxygen concentrator because I felt like I couldn't breath. Those types of days get me down as you begin to panic that there will be more of them to come. I was anxious that I was going to have a meniere's attack because I was so exhausted (that can be a warning sign that an attack coming). Luckily it didn't happen and once the breathing side of thing was more under control after a dose of mestinon, I slept the remainder of the day.

What gets me down the most at the moment I guess is the menieres, the attacks have dropped to one per week roughly (I was unlucky enough to have two last week), but because I have been given medication to treat it, people assume that the attacks don't happen anymore and are quite surprised when I tell them they are. I wish like countless other people with chronic illness that the pills did make the condition disappear but it doesn't. The unpredictability of the condition also frustrates me, I feel anxious when I plan anything in case I have to cancel at short notice. Anytime I leave the house i have to take a bunch of medications with me just in case I have an attack, treating it early on in the attack, a bit like a migraine, means I get back in control and it shortens the length of the attack. If left too long the medication won't work as effectively and I could be left with the spins for the rest of the day. I feel that it has taken over my life.

So I am slowly perking up, the good days outnumber the bad, bad days are still happening. However everyone even those people without depression have days where they don't feel good mentally. That is normal, it is when the bad days outnumber the good that you need to seek help.

Mental health organisations in the UK that can give you immediate help:

The Samaritans if you find yourself needing someone to talk to, the samaritans will provide it without judgement. I have used them myself in the past and I can not praise them highly enough.

These are links to Mental Health Charities that can help you with information and support.
Rethink Mental Illness
Young Minds - this Charity provides support for children and young people with mental health problems. It also has a help line for parents to assist them to help their child.

Help is out there, if you need help reach out to one of these organisations.

Thursday 12 November 2015

Happy birthday

This was written a couple of weeks ago, then my body decided to take a break so it wasn't published! I also need to state for the record I have received no payment for any of the products / items featured in this blog post. They are all gifts from friends and family.

In this past week it's been both mine and the hubby's 42nd birthday. We literally can say that we are 21 again. Twenty-one seems so far away from where I am now. I was at university completing my degree, living at home and working my part-time job. How life can change over a period of 21 years, in ways you never thought possible.

I used to hate birthdays, I haven't always I have just hated them since I got sick as they were the mark of another year passing by. Since my 40th birthday I have been making much more of an effort with them and they have been much better. We didn't go down to Plymouth this year I am still too sick for that currently however as my new consultant is based in Plymouth we will be making that journey at the end of the month, when I have my first appointment with him.

My birthday was manic, it was probably quite a sedate affair by most people's standards but it felt from 11:30am onwards that I barely caught a breath. I had a wonderful surprise visit from a friend at around noon. She bought me a little birthday cake, with the hilarious note on it, see below

She told me she had surprised me as she didn't want me running about trying to sort out the house before she turned up. She did take me by surprise as when she arrived I was still in my pj's. It was lovely to see her and I am so grateful to her for coming over. I am lucky that I do have some brilliant friends, who make the effort to see me, when as I wrote in my last post due to depression I haven't been brilliant at keeping in contact with them.

The absolute highlight of my birthday was having my six-year-old nephew sing happy birthday to me down the phone. He is now at an age where you can hold a decent conversation with him. He says Auntie Rachel in such a cute way my heart melts. He finished his singing with "I love you Auntie Rachel". He also wrote my birthday card out and his writing has come on so much in the last year, it made me very proud of him. His uncle also had the same phone call the following day and I know hubby was very chuffed when he was told "I love you Uncle Jamie and I like you". I was gutted I am loved and not liked, hubby and I are so competitive.

My adorable nephew also chose some of my presents for me (with the help of his mum), this beautiful scarf with foxes on (I love foxes) and  purse (which isn't pictured).

I was truly spoilt on my birthday, hubby with the assistance of our friend bought me some Mac Foundation and some concealer ( something I have been wanting for a while). As my husband is utterly useless at gift buying unless he has a list, which kind of takes the surprise out of presents but saves me from god awful gifts, he enlisted the help of a friend who picked out some lovely bits of makeup and beautifully wrapped the presents as well. I have told her to just say no if he tries to do the same at Christmas, as it would ruin Christmas morning if I couldn't take the piss out of his gift wrapping skills!

The photo also contains two eyeshadow palettes that my sister bought me for my birthday and I absolutely love them. On the back it tells you where to put each colour to create some really fabulous looks. They are also in colours I wouldn't have been bold enough to choose but they really suit me.

My parents bought me something I have coveted for years, an Emma Bridgewater mug with my name on. Unfortunately whomever was responsible for painting my name on the mug decided to add an extra "A". I was gutted to find that my name had been spelt wrong when I opened the parcel. I got straight on the phone to Emma Bridgewater customer services. I have to say a big thank you to the lady who sorted it out, I have another mug coming to me as priority (normally the personalised items take up to two weeks to be dispatched). This was all completely hassle free and I don't even have to return the incorrectly spelt mug, which I have decided to keep because a) it makes me laugh every time I see it and b) it is a thing of beauty!

By the time I started finishing off this blog post my mug had arrived (it took around a week. So here is the correctly spelt mug below! I love them both.

My husband had no clue that I had also ordered him a personalised Emma Bridgewater mug with Dinosaurs painted on it. He maybe 42 but he still loves talking about dinosaurs with his nephew! Jay loved it, on the bottom of the mug I have also had painted on the message "I love you xx", so when we are having a cup of tea he can flash me the bottom of the mug.

There are too many gifts to photograph but amongst them was an A-ha CD of them live in concert, a beautiful bouquet of flowers (and they are still going strong!), a box of luxurious chocolates (now eaten they didn't stand a chance really) and many other gifts. I was well and truly spoilt, writing this blog has made me realise how lucky I am to have such great friends and family.

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A quick health update - my prolactin levels have now gone back to normal, my gp believes that I may have PCOS and I need a blood test to check the level of testosterone in my blood. 

My Menieres disease attacks have now dropped to just one a week on a dose of 32mg of Betahistine 3 times a day. When I do get attacks now they are less violent. Over the last few days my tinnitus levels have dropped as well. Fingers crossed I am going to have a bit of a break from it all.

Next week I am having a DXA scan of my bones. As I have EDS my bone density will drop significantly after the menopause so they need to do a scan so they have a baseline. Also because we don't know how long my prolactin levels were raised for I could have lost bone density so that also needs checking out.

My PoTS is playing up quite a bit at the moment so that is annoying but I see my new consultant in a few weeks.

Thursday 5 November 2015


It's been a busy 7 days with both mine and hubby's birthdays being celebrated. I am exhausted from enjoying myself and have also come down with a Meniere's attack. So unfortunately todays blog post has had to be sacrificed whilst I recover.

Have a great week everyone!