I can’t even…

I can’t even… move, think, function…

Today is mot a good day. I’m having pretty much rolling panic attacks and my anxiety is thrumming like a tautly strung guitar which makes me feel tremulous and shaky.

I cannot explain why I am like this. No matter what I do, I am not able to settle down and relax into what I want to do. I can’t colour – my eyes won’t focus and when I look at the colours, they all seem to shimmy and swirl into one unidentifiable colour.

My allodynia is driving me around the bend. My skin is super sensitive and even the breeze blowing across it makes it difficult to cope with and is super painful. Then when I get cooler, I try and use my duvet, but you can guarantee that my skin will scream and try to crawl away from the fabric because it just hurts too goddamned much. Then I also have hyperalgesia which is basically my Fibro amplifying every single bit of pain that I get by about 100 times. To finish off, my paresthesia is also really bad. It feels like thousands of tiny little knives are running up and down my skin and it quite honestly makes me want to cry.

Is this normal I hear you say? Hell yes it is. This is pretty much how it is every single damn day for me. I can never have a single day where my pain is not ruling my life. Yet you know what? I’m not looking for your pity. I would just like a little bit of understanding and the occasional hot water bottle please.

Be kind to each other.x

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Sick and Tired…

I am really sick and tired of being sick and tired. I became seriously ill back in 2007 and fought it off and worked every single day that I could. I was determined to cope with things.

Then in February of 2009, I became even worse. One morning I woke up, and I simply could not move. Every time I tried, a searing pain would shoot the whole way around my body and that made it impossible for me to actually get my ass out of bed. My body was sick and tired of being forced through that shit every single frikkin’ damn day.

I shouted and shouted and eventually my eldest got up out of his bed and came through to see what the hell was wrong. When he saw the state I was in, he just ran forward and gave me a huge hug. I had to really bite my lip to keep from screaming on that one, because my eldest is severely autistic and if I had reacted in any negative way, it would have severely affected his mood and I will never deliberately do that to him. Ever.

Eventually, around ten minutes later, he went and got me what I needed – my own mobile phone so that I could call the boys school and tell them that they would be a little bit late as I was having some difficulties. Luckily the school understood and were really fine about things. Then I had to call my partner who was at work and wasn’t happy about having to come home. That was until he actually got home and saw me sweating and vomiting over the side of the bed into my rubbish bin because the pain I was experiencing was literally that bad.

He rang my doctor’s surgery and they advised him to call 999 to get me to hospital. I fought against this because the ambulance service are under enough stress. They don’t need to be dropping the blues and twos for my pain they really don’t. So I begged for a doctor to come see me at home instead. Foolish me thinking that he would see me and just tell me to rest a while and all would be well. Oh no no foolish woman! Guess again! After being poked and prodded around, he pulled my partner off to one side and started talking to him which really did piss me off! Ummmm, hello? It’s my legs that aren’t working, not my brain.

The doctor then announced that I did have to go to hospital and he was calling ahead to get me a bed and also arranging for ambulance transport (not paramedics) to come and take me in. My partner packed my bags and then took the boys to school so they wouldn’t have to see me leave in an ambulance. He was back before they even arrived. A fast ambulance ride later and I arrived on the medical emergency ward. A few hours later, I was taken onto one of the medical wards. My care was undertaken by a group of consultants. Medical, Orthopaedic and Rheumatolgy. I went through two long weeks of scans, X-rays and blood tests. This resulted in me being given one hell of a shock. I didn’t get just one diagnosis. I got several, and all of them were life changing.

I was told that I had both osteo and Rheumatoid Arthritis. Then Fibromyalgia and type 3 Ehlers-Danlos Syndrome which also led to me being diagnosed as having Dysautomia due to Postural Orthostatic Tachycardia Syndrome. After that came osteoporosis.

Just as an afterthought, I have restless leg syndrome, trigeminal neuralgia, carpal tunnel syndrome, asthma, a cardiac murmur and a small congenital hole in my heart. Couple that with Polycystic Ovarian Syndrome and IBS and you can imagine that since February of 2009 that my life has become hugely different and I had gone from being a totally independent woman who worked bloody hard and had been a registered nurse for most of my working life to being a totally dependant woman who needs help with pretty much every aspect of my personal life and care. This really gets to me. It makes me so sad and so freakin’ angry. I used to bake some pretty awesome cakes (I did a mean lemon drizzle) and I just can’t do that anymore. I can’t cook, clean, take care of the house or myself. I literally am dependant on my carer for everything. Yup, at 46 years old, I have a carer. 😭😭😭 I hate my life.

My day starts when I wake up, normally around 4am. I’ll have had around three hours of broken sleep and been tossing and turning like a fucking washing machine. I then clock (almost typed cock then) watch round to 6.30am when I can take my morning medication – hey, it’s only a handful of 15 pills. Shake me and I’ll rattle! Then I need to wait until around 8.30-9am for my carer to arrive. I’ll then get my hot water bottle made for my back. If the day is a very bad one, then there is a less than zero percent chance of me getting out of bed. I know if I do my pain levels will shoot through the roof and if I’m lucky, only one joint will dislocate. I have learned how to pop most of my joints back into place. I would be spending half of my life in the emergency room otherwise. The only joint I can’t do is my shoulder. So days like that see me with all of my braces on and resting in bed.

◦ On the rare days when I feel well enough to get out of bed, I will have help to get changed into a clean pair of PJs. I have hyperathaesia and my skin is so sensitive, most days I can only tolerate soft cotton PJs. On bad days, I have to go nekkid. If my bad days fall on a day where I have to leave the house for an appointment, I really suffer and have to strip the moment I get back home. I hate it.

On good days, I’m able to prop myself up in bed and either do some colouring or write letters. On a bad day, I just tend to cry and read on my Kindle.

I’ve learned to accept that my day is peppered with taking pills and having my time consumed by struggling to do even the most simple of things. I’ve had to learn not to be sick and tired. I’m just so very lucky that my friends and family are tolerant and I am so bloody lucky to have them in my life I really am. Without them I would be less than nothing.

Most of my days are now spent reading, writing letters as I’ve already said, and trying to think of interesting things that people who follow my blog might like to read. I try hard to balance what I write and I also try to fact check anything newsworthy as I don’t like spreading stories that aren’t true. It can do a lot of damage to people.

So why write this? I guess just to show how things can change in the blink of an eye and you should never be ungrateful for what you have. I see myself now as very lucky. People have asked me how I can say that given how my life has changed. It took me a while and a lot of adaptation before I could say it. I have two fabulous kids, a partner who worships me, a gorgeous if slightly potty cat and some of the best friends that I could ever wish for!

Be kind to each other!x

Things You Think a Spoonie Won’t Notice – But We Do – And it Hurts…

Being chronically ill is absolutely draining and it can leave a person utterly wrung out to a degree that you can’t imagine. We can be wiped out for most of the day after we have cleaned our teeth (true story – I was literally crawling back to my bed with tears in my eyes). It is a truly shit experience.

Now if you have ever felt this way, you will understand where I am coming from. If you have no clue what I’m talking about, it’s going to be a head scratcher for you. 12th May is Fibro awareness day. Fibromyalgia is the bane of my life. It has destroyed me in so many ways. So I will happily sit in my wheelchair and stamp my booted feet to raise awareness of this utterly vile shitbag of a disease. If you are newly diagnosed then there is a really rather brilliant piece written by a rather fabulous lady called Christine Miserandino. The piece itself is called “the spoon theory” and you can find it here…

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Seriously, if you really ache to understand why your partner/best friend/colleague feels the way that they do, then I urge you to go ahead and read this piece of writing. Of course, there are many other pieces written and available on the internet, but I have found Ms Miserandino’s to be the best about.

Where do I start with how my illness has decimated my life and just how certain I am that I know people look at me when they think I’m not looking and mutter some poisonous bullshit under their breath when they think that I cannot even hear them. Well guess what bitches? It’s my body that doesn’t work. I have one ear that can hear just fine and that is more than enough to hear you (if you wanted to know, I sustained hearing loss in my left ear after a firework was thrown at me and exploded near my head).

I was a qualified nurse for 15 years. I worked long and hard shifts and spent many days trying to advance my professional ability. I ended up working as a Macmillan nurse before I escaped a very violent marriage. I ran back home with my kids to Scotland and then mcy diagnosis of Rheumatoid Arthritis (received in 1998) began to make life real hell for me as a nurse. The time came, after that , for me to take a different career pathway.

I had to give up the career that I had loved for fifteen years and that just hurt so much. But my body just was not able to cope with the physical demands of a career like nursing. We had been through a hellish time and I needed to be around for my kids. I took up a part time job in my local food mini market (Co-Op for anybody British).

The kids settled after a while and I was able to extend my hours and earn a little more for them. However, my body had been pushed beyond its limits thanks to the pressure of being a carer and then a nurse as well as all the years of physical abuse that I endured, and in February of 2009, my body finally knocked me on my ass.

I woke up one morning and I couldn’t move. I could only just about flutter my eyelashes and that was it. My partner was amazing. He got me to a doctor who sent me straight in to hospital. After a butt load of tests and scans, I was rocked by a long, long list of diseases. As well as my rheumatoid arthritis which I knew about, I now had osteoarthritis in my spine and neck. I had Fibromyalgia and Chronic Fatigue Syndrome, I had osteoporosis, Ehlers Danlos Syndrome Type 3, and had also had a stroke and a cardiac murder as well as a small congenital hole in my heart.

This list of diseases has changed my life for the worst. I am now wheelchair bound and need a carer to help me do pretty much everything that I used to be able to do for myself.

So here are the things you don’t think that we notice but we do: When we park in a disabled parking space and our carer comes round to our side of the car with our wheelchair, we see you looking at us like we are just lazy and we don’t need to use that space. Believe me, if I had a choice, I would push my wheelchair into the North Sea if I could! I need that parking space and have more right to it than the yummy mummy in her Chelsea tractor who has just popped in for croissants and coffee on the way home from dropping little Tommy at school. Where is her dirty look? Is it because you think I look too young for this chair? I see your dirty look, and it hurts.

We see you give the dirty look to the young woman or man who desperately dodges into the disabled toilet in the queue at the cinema. You judge them as lazy or not deserving of using the disabled loo. Well just think… that person may be in desperate need of changing their colostomy bag before it bursts all over the cinema foyer. Think people!!! Your selfish judgement can really cut like a knife!!! When that person gets into the bathroom with tears stinging their eyes, they feel ostracised for their illness. As they open the bag to empty it, someone from outside yells, “Eeeeew, what’s that stink?” The person in the toilet? They notice what has been said.

You look at me in my wheelchair. You judge me. I’ve heard people whisper “She’s too young to be in a wheelchair” (I’m 45 – what age do have to be before my butt cheeks can kiss the holy grail of a plastic cushion that is going to make me sweat like a pig all day?) You think I like being stuck in this chair? I hate it with a fiery passion I really do!

So next time that you see someone that doesn’t belong somewhere in your judgement just stop and think. That Spoonie may have a damned good reason for doing what they did. We are invisible illness warriors, but your words can cut us down. THINK before you speak! We hear you every single time… and guess what? It hurts.

Be kind to each other.x

Our Mental Illnesses Are NOT Your Cute Personality Quirks…

Seriously people. The next time that I hear”Oh I must tidy up, I’m so OCD today” or “Oh she’s up one minute and down the next – she’s so bipolar!” I am going to stuff my walking stick right up that person’s asshole and turn them into a fucking lollipop. I swear I am.

Listen up people. Suffering from mental illness is no triviality and neither is it a fucking joke. I have struggles with several mental health issues, OCD and bipolar being two of them, so it really does set my teeth on edge when I hear someone coming out with an off the cuff, totally fucking moronic comment like that.

When we said we wanted mental health disorders to be spoken about more, we didn’t mean for you to appropriate them into your everyday conversations.

Lately (and unfortunately), it is becoming something of the norm that mental health disorders find their way into everyday discussions, and not in the way we’d like them to. I can’t count on my hand how many times I’ve heard someone who’s had a minor inconvenience or mishap go on to complain about how ‘depressed’ they are. Not only is it infuriating, but it’s hurtful.

For those diagnosed with depression, you’ll know it’s not something that suddenly happens after something goes wrong, or you’ve had a ‘bad day.’ It’s a constant state, you’re trapped in it, and it is definitely not something that can be used as an adjective.

No, Sarah, just because your boyfriend hasn’t texted back in three hours, doesn’t mean you’re not depressed.

You are upset, sad, down, blue (see ‘unhappy‘ in the thesaurus for more synonyms) but you are certainly not depressed.

However by comparing your sadness to a mental health disorder, what you’ve done is silence the kid three seats down from you who’s been dealing with this disorder for months, who’s struggling to wake up every morning, who’s on medication just to get them through the day.

You’re comparing a moment of sadness in your life, to a lifetime of theirs.

But it’s not just depression that is used as an adjective, it’s next to all mental health disorders. I remember sitting in class once whilst a group of teenage boys were stalking a girl’s Instagram page. They reached a picture of her where she looked skinny, slim, and thin, and all they could think to say was, “Wow, she’s so anorexic!” I was thinking to myself, “Really? Out of all the words to call her, you had to relate it back to a mental health disorder?”

The list goes on; calling someone who organizes their work neatly on a table ‘OCD’, calling someone who’s mood has changed from the last time you saw them ‘bipolar’, not getting a good nights sleep and complaining that you must have ‘insomnia.’ They are not adjectives, they are our real mental health disorders that real people face. We have not come forward about them for you to simply misdiagnose yourself after one incident.

So next time you feel the need to compare your sad moment. tidying of your room or unexpected mood swing to a mental health disorder, open a thesaurus. There are plenty of synonyms; use a different one.

Best Buy ever… and talk about poo…

Now then. I’m going to talk about something that, if you are chronically ill, can be a huge part of your life. Pooing. Yes…. poo. Lots of people don’t like to talk about it but it is one thing that needs to be talked about.

Taking a poo is something that healthy people don’t think about. It’s a normal, everyday function and you just get on and do it whenever you have to.

However, when your health starts to change and your body becomes affected by chronic illness, that can change dramatically. It can change as a result of your illness or as a result of your medication. If you are especially unlucky it can be as a result of both.

I have severe IBS but my Fibromyalgia also affects my bowel function. I am either hugely constipated or permanently on the toilet because of almost torrential diarrhoea. The other thing that affects me is my medication. As I have a number of illnesses that require strong pain medication, I am even more constipated than I usually get. When I do go, it’s like pooing pebbles. Rock hard and hugely painful.

Then I watched a review of something called the “Squatty Potty” by a lady called Antonella the Uncensored Reviewer. The woman is fabulous but very blunt and NSFW or not safe around young children. She does product reviews of all kinds of stuff, but it was the Squatty Potty that caught my attention due to my issues.

I hunted around to find out a few more facts about how it actually works.

The idea of squatting to poo is nothing remarkably new, and many cultures across the world have public restrooms with squatter instead of toilets. It’s hard to deny that it’s a cleaner way to go as far as sharing a toilet with someone, but there are also several key benefits to squatting vs. sitting that just make sense.

It’s also easy to see that this is the way that our species was designed to relieve ourselves, and that the only reason we stopped going that way is because the use of a sitting toilet became widespread in the west. Aboriginal people all over the world go in this manner, and unless you train a young one to use a sitting toilet their natural inclination will be to squat.

In the squatting position, gravity does most of the work. The weight of the torso presses against the thighs and naturally compresses the colon. Gentle pressure from the diaphragm supplements the force of gravity.

Squatting relaxes the puborectalis muscle, allowing the anorectal angle to straighten and the bowel to empty completely.

Squatting lifts the sigmoid colon to unlock the “kink” at the entrance to the rectum. This kink also helps prevent incontinence, by taking some of the pressure off the puborectalis muscle.

The colon is equipped with an inlet valve (the ileocecal valve) and an outlet valve (the puborectalis muscle). Squatting simultaneously closes the inlet valve, to keep the small intestine clean, and opens the outlet valve, to allow wastes to pass freely. The sitting position defeats the purpose of both valves, making elimination difficult and incomplete, and soiling the small intestine.

Sure, the first time that I mounted the royal throne and sat with my knees up around my ears I felt very bloody odd. I can’t lie either. It did put my lower back in a painful position. But I was willing to suck that up in order to potentially have a proper poo. Which I did!!! Woohoo!!! Yay for me I was so happy!

Do you buy the squatty potty? Shop around on Amazon. I found one that was much cheaper than the original squatty potty and it does exactly the same job. Also, if you go for the squatty potty, you have to do measuring of the toilet. None of that involved with the one that I chose. It was a damn sight cheaper than the squatty potty as well.

Should you think about this? Absolutely! Once you get over the weird way you are sitting, you “go” much more comfortably and no angry thrutching and groaning is needed. A highly recommended product! 10/10!

Be kind to each other!x

How to feel fresh when your pain is so bad you could scream…

If you are a Spoonie, otherwise known as a sufferer of an invisible, chronic illness then what I’m about to say will make an awful lot of sense to you. If you are a relative/carer of somebody with an invisible or chronic illness then this may well make an awful lot of sense to you too.

There are days (like today for me) where clothes become an intolerable pressure on your skin and the friction is just too much to bear. I just can’t stand the feeling. I have hyperaesthesia which basically means extreme sensitivity of the skin. On days when it is really bad, I can’t stand to wear clothes at all. Most days I’m able to tolerate light cotton but nothing heavy, fleecy or woolly. Yet days like today? Nekkid is all I can tolerate.

The inability to wear clothes some days is amplified when my pain is bad. On those days, even my bedding is too much and I can’t stand it. So on cold days I have to go without blankets or sheets. Luckily for me, I love the cold weather so being cold really does not bother me at all.

There is one big problem when you feel this ill. There are some days where you simply do not even have the strength to stand at the sink for longer than 2-3 minutes. This makes maintaining your own hygiene very difficult indeed. I need help anyway. I am unable to lift my arms to brush my hair and I’m unable to reach from side to side of my body to wash properly, hence why I need a carer. Yet there are some days when (like today) I can’t even tolerate the feel of a flannel on my skin. It’s just too much.

If you have similar problems to mine, then I have a few suggestions that might help to make your day a little bit nicer. After all, hygiene is a vital part of feeling good about yourself so the more that can be done to help you the better. If your pain and general symptoms really are making you feel that shitty, then hopefully these suggestions will help you.

The first thing that I used to do in the morning, when I was able to maintain my own hygiene, and was working, was to wash my face. This product still allows me to do that. They are called Wake Up Wipes. They are brilliant value at just £1 a pack and really do make your face feel refreshed and bright to face the day. They contain cucumber extract and feel great on your skin. They can be found here:

https://www.misfitcosmetics.com/products/wake-up-wipes-wake-up-your-face-and-skin

Next up comes your mouth. There is nothing worse than morning dog breath and when you cannot make it to the sink to stand and brush your own teeth, it really does not make you feel very nice about yourself at all. I’ve discovered these little disposable toothbrushes on days when standing at the bathroom sink is not an option. They are called Colgate Wisp Max Fresh single use toothbrushes. They are really handy. Of cosier, brush your teeth when you can, but these little buggers are awesome on days that you just can’t. You can also use listerine strips which are great breath fresheners…

https://www.amazon.co.uk/Listerine-Pocketpaks-Oral-Care-Strips

Then there is the issue of maintaining your personal hygiene which can be a huge issue. If you are unable to wash, you feel smelly and generally very low. Being able to give yourself a quick wash, even if it is with wipes, it really does lift your mood. There are several brands of bed bath wipes. Shop around as you can find them quite cheaply if you try.

There is also the issue of feminine hygiene. I use Femfresh wipes for that. They can be found anywhere and are probably cheaper online if you look.

Lush’s Silky Underwear dusting powder helps absorb sweat and smooth your skin while the essential oils and herbs work to knock out the effects of bacteria. The Silky Underwear powder has a light jasmine fragrance and contains grated cocoa butter to help it melt onto your skin, creating a silky sensation. I love it!

If you can’t wash at at, a little surgical spirit on a cotton wool pad will remove body odour before you put on deodorant.

Witch hazel is a great way to cleanse your skin and it helps to cool the skin when overheated.

I also buy all my skin care from Lush, but since I discovered and fell in love with the marvellous Antonella The uncensored reviewer :

https://youtu.be/W7m4_6BD8cQ (Just one of her many awesome videos. BE WARNED: NSFW and definitely NOT FIT FOR CHILDREN!)

I will most definitely be trialling some of the skin care that she recommends.

There are other things like dry shampoo – I use the Batiste tropical one, but because my hair goes all the way down to my ass, one can doesn’t last me long!

Well I hope that this blog piece helps you, even if it is just to give advice to a relative. That’s all for now.

Be kind to each other.x

Misophonia – The Hatred of Sound…

So, what is this weird assed sounding condition that you’ve never heard of before? Misophonia literally translates as “hatred of sound”. It really is a horrible thing to suffer from and the impact of suffering from it can only be truly understood by another sufferer of the condition. It truly can be a nightmare to live with.

However, a person with misophonia does not simply hate all sound. People with misophonia have specific symptoms and triggers and are sensitive to only certain sounds and occasionally to visual triggers. Any sound can become a problem to a person with misophonia but many are some kind of background noise. People call the collection of sounds that they’re sensitive to their trigger set. It is possible to add to one’s trigger set over time. Exposure to a trigger sound elicits an immediate negative emotional response from a person with sound sensitivities. The response can range from moderate discomfort or annoyance to full-fledged rage and panic. Fight or flight reactions can occur. During a trigger event, a person may become agitated, defensive or offensive, distance themselves from the trigger, or act out in some manner.

I first began to realise that something was “wrong” with my hearing my hearing when I remember being so infuriated by the sound of my ‘father’s’ chewing that I could have quite cheerfully have gouged out his eyes with a rusty spoon. I very quickly came to realise that eating/chewing sounds from anyone would begin to infuriate me so much to the point where I literally have to leave before high fiving them. In the face. With a chair. It gets to me that point where calmness is not an issue and I have to back away from the sound.

I have been lain awake being tortured by the sound of my own heart beating. Obviously it is a good thing to know that your heart is beating. But I’ve been thrashing around for several hours, trying in vain to escape the sound. Imagine being filled with an irrational hatred of that sound, or of pretty much any sound? Hearing people breathing/snoring literally makes me want to slap them with a wet kipper.

The one sound above all others that fills me with utter rage is whistling. The sound seems to find it’s way right down into the middle of my brain and stay there. Hearing someone whistle really does fill me with murderous rage. I’ve had to say “either you shut up or one of us leaves the room”. My hatred of the sound of it is so bad. Other sounds also affect me. Cracking fingers & knuckles, making noises with lips, tongue and cheeks and people pronouncing words the wrong way on purpose like “horsey worsey”. Aaaaaaaargh! Baby talk also drives me crazy!

The sound of fingernails scraping down a chalkboard is unpleasant to many people.

But this is a very mild example of what people with misophonia experience when exposed to a trigger sound. It lacks the intensity a misophonia sufferer experiences and doesn’t have a strong negative emotional component. Not liking something, even if very strongly, is unlikely to cause a person to feel like lashing out at the source of the offending sound. Also, it is unlikely to produce an actual fight or flight reflex. The people closest to the person with misophonia often elicit the most problematic triggers. This can make personal relationships difficult and stressful. An environment known to include trigger sounds can limit social activities because the person with misophonia anticipates problems. Consequently, a person with misophonia can pull back from family and friends in an attempt to reduce the symptoms that they experience when triggered.

People with misophonia are aware that the sounds that trigger them don’t bother other people.

A person with misophonia does not always have any control over their work environment. A coworker munching on food may be too distracting or even produce a full-fledged panic attack. An environment that will not or cannot accommodate the needs of a sound sensitive person can result in anxiety for the person with misophonia. It may also challenge supervisory staff. At times, the sound environment can be enough of a problem to make keeping the job intolerable. A school environment can be similar; having a long-term negative impact if it interferes with the ability to learn or socialize. When exposed to a trigger sound, some people feel the need to mimic what they hear. Mimicry is an automatic, non-conscious social phenomenon. It can have a calming effect and make the situation feel better to the person experiencing stress. There is a biological basis for how mimicry lessens adverse reactions to triggers because it evokes compassion and empathy.

 

Those with misophonia can be reluctant to share their symptoms and triggers.

To them, sharing can have uncertain outcomes. Sometimes, people purposefully mock those with sound sensitivities. Also, they may make exaggerated trigger sounds in order to intentionally cause distress. Unfortunately, some family, friends, co-workers, and others minimize the problem. A person with misophonia is sometimes told: “try to ignore that sound,” or “you’re just being difficult,” or “don’t let it get to you.” Suggestions like these are not helpful. It is not simply a matter of making a conscious decision. People with misophonia cannot ignore their triggers any more than a person with epilepsy can will themselves not to have seizures. On the other hand, there are those who are supportive and offer encouragement. Anyone with a problem or difficulty appreciates a helping hand now and then. If you know someone with misophonia and want to help them cope with the disorder, all you need to do is ask what you can do to help.

List of Common Triggers:

Please note, some say that reading about triggers has the potential to make one take on new triggers. This is only true for some people and is not universally experienced by all people. Also, some people avoid hearing or imagining sample trigger sounds for the same reason. If you think that learning about new trigger sounds could in any way be a problem for you, then there’s no need to read the lists below.

Mouth and Eating: “ahhs” after drinking, burping, chewing, crunching (ice or other hard food), gulping, gum chewing and popping, kissing sounds, nail biting, silverware scraping teeth or a plate, slurping, sipping, licking, smacking, spitting, sucking (ice, etc.), swallowing, talking with food in mouth, tooth brushing, flossing, tooth sucking, lip smacking, wet mouth sounds, grinding teeth, throat clearing and jaw clicking.

Breathing/Nasal: grunting, groaning, screaming, loud or soft breathing, sniffling, snorting, snoring, sneezing, loud or soft talking, raspy voices, congested breathing, hiccups, yawning, nose whistling and wheezing.

Vocal: humming, muffled talking, nasally voices, overused words such as um or ah (repeated words), sibilant sounds (S, P, T, CH, K, B sounds), singing, gravelly voices, bad singing, soft whisper-like voices and whistling.

Environmental: clicking from texting, keyboard/mouse, TV remote, pen clicking, writing sounds, papers rustling/ripping, ticking clocks, texting and cell phone ringtone.

Utensils/metals: dishes clattering, fork scraping teeth, silverware hitting plates or other silverware and rattling change in pockets.

Plastic: water bottle squeezing/crinkling, breaking hard plastic and bouncing balls.

Wrappers: plastic bags crinkling/rustling, plastic bags opening or being rubbed and crinkling food packages.

Cars: sitting idling for long periods of time, beep when car is locked, car doors slamming, keys banging against steering column and turn signal clicking.

Heavy equipment: lawnmowers, leaf blower, air conditioners and chain saws.

Impact sounds: other people’s voices, muffled bass music or TV through walls, doors/windows being slammed and basketball thumps.

Animal noises: dogs barking, bird sounds, crickets, frogs, dogs or cats licking, drinking, slurping, eating, whining, dogs scratching themselves and trying to bite their fleas and claws tapping.

Baby: Baby crying, babbling, adults using baby talk and kids yelling.

TV: loud TV or radio. Body Movement related: Foot shuffling (dry feet on floor/carpet) or tapping, finger snapping, foot dragging, heels, flip flops, knuckle/joint cracking, eye blinking, nail biting and clipping, eating, chewing, fidgeting, hair twirling, movements out of the corner of eyes, repetitive foot or body movements, jaw chewing/movement.

I can honestly say at some stage or another in my life I have come very close to causing serious damage all because of one of any of these noises. This is why I wear noise cancelling headphones and simply listen to Classic FM.

So if you have never been officially diagnosed with misophonia but what I have talked about sounds like a clip from your own life, then feel free to leave a comment and we can chat. Misophonia sufferers are not alone.

Why the sound of chewing drives you crazy… no, really!

Fibro… It f**cking hurts… think about it!

Fibromyalgia is becoming more prevalent and we see more and more people diagnosed with the condition every single day. Before I continue on with this piece, I need to point out – so f**king what if a person happens to be famous? It doesn’t change the fact life is going to be utterly shit for a long time for them now. Perhaps for the rest of their life. There’s not a single day where we can’t think, “Oh poor Lady Gaga has got fibro.” because the press tell us that’s how we have to think. Well I couldn’t give a shit. I’m too busy thinking about myself and the other thousands of spoonies (to be explained later) around the world. People bang on about how brave Lady Gaga is for moving with all that pain. Well fucking bully for her. What about me and the thousands like me who can barely move. Because we are not favoured by a screen career or we are not singers our heroic efforts really do become nothing. We become nothing and our struggles are nothing.

Then comes the fact that we achieve things and they are not even acknowledged by our significant others. That, for me really does sting. Then he wonders why he gets a short, sharp fuck off when he develops spaghetti arms later that same day.

Our loved ones can try to be as caring and understanding as possible and they can either crack being understanding and wonderful or they can do nothing but blunder heard first into an enormous pile of caca with all the style, grace and tact of a fucking woolly mammoth. It’s true, it really is!

Should you, like me, enjoy trying to flog a dead horse, you can of course try to bring some semblance of knowledge to said almost dead horse in a vain attempt to make these people gain a little more understanding and to not speak to you with all the tact and decorum of a 20 pound lump hammer!

Seriously the way that I’ve been spoken to by both friends and complete strangers in the past? They have been experiences that I can liken to being slapped across the face with a three week old mouldy kipper.

Now many people that decide that their infinite wisdom presents them with a plethora of little nuggets of wisdom all of which they can and will bestow upon us with monotonous regularity.

Some of those nuggets can be found in the article below.

What not to say to someone with Fibro…

Y’know guys, the next person to say that they are going to pray for me is heading for a swift kick between the legs – male or female, it gets the point across nicely.

There are so many comments that are so downright hurtful but people don’t even realise that they are hurting you. They honestly think that they are being kind and supportive. Well guess what buddy? You’re not.

People don’t understand just how draining having a chronic illness like Fibro is. The energy that even just brushing your teeth can drain from you. A lovely lady called Christine Miserandino devised something called the spoon theory, which helped to explain to significant others/family/friends just how debilitating it can be. You can read about it here:

The Spoon Theory

It’s such a simple way to describe what we go through every single day, but my gosh does it ever get the point across. This explains my use of the word “Spoonies” before. This is what many chronic illness warriors will call each other. It’s who we are.

But people need to understand that there are days, many of them in fact, where I cannot remain stood for more than 30 seconds to a minute without dropping to my knees in pain. Days like this mean standing in the bathroom and caring for my basic hygiene impossible. Even on a good day, I cannot brush my own hair as my shoulders won’t go up that high. Nor can I wash myself or put on my own clothes without help. It’s soul destroying to not be able to do that it really is.

May 12th is international Fibro day, and I will be writing more posts about it before then. I’m so sorry if the tone of this post has come across as hostile or aggressive at all. All I’m aiming to do is promote an awareness of the disease and help explain the things that make make a Spoonie a little bit cranky.

Thank you for reading.

Be kind to each other.x

Unboxing my February ’18 Blurt Foundation Buddy Box (subscription box)…

My box arrived yesterday and was wrapped in plastic, which was a little bit of a downer as I couldn’t neatly open it to repurpose it. There was a tear in the corner of the bag. Looking suspiciously like someone had tried to peak inside. However, as the boxes are plain brown apart from some gold lettering and pictures on the lid, it wasn’t possible to see what was in the box. Whoever peeked probably thought, “Dirty cow’s been buying sex toys!” 😜😜😜 However in all seriousness I would like to see some recyclable/biodegradable outer packaging. That would be nice.

Why do I have a Blurt Buddy Box? Quite simple really. It’s my friend Jenna’s fault. Yup. Blame squarely at her door, on her shoulders, however you want to say it. Hahaha, just kidding. Love you dude!

So who are Blurt?

Well, quite simply put, Blurt are like a big cuddle you can get on the internet when you feel like your black dog is snapping at your heels. Whether you are newly diagnosed with depression or have known for a long time, we all occasionally need help. Blurt are here to give that help.

What are Buddy Boxes?

Buddy Boxes are a subscription box service that exist to bring some self care and happiness through your letter box once a month. They also help The Blurt Foundation raise much needed funds to continue its hugely important work. They cost £21.50 a month and postage is free within the UK. They do ship internationally but I’m not sure about costs. They do a Buddy Box which has five items and a Buddy Box Lite which has three. Obviously the Lite box is much cheaper.

I stress at this point in my post that I was not provided to me for free. I received a box from a very kind friend who has bought me a subscription for my birthday.

What’s on the box?

As I mentioned before, the box is a sturdy looking plain brown postage box (fnarr fnarr) and the top of the box is embossed with two gold llamas and the words Buddy Box.

(See what I mean? Sorry my camera just wouldn’t take this picture any better.)

What’s in the box?

I gave said box a jolly good sniff before I took the lid off. There was a definite smell to it but I couldn’t quite make my mind up what that smell was.

February’s box theme was “You’re the llamas pyjamas”.

As the box lid came off, the smell became much more noticeable and distinct. Not an unpleasant smell but not the nicest smell ever. (My favourites being cinnamon, ginger, and patchouli). The box was covered inside with white paper with black llamas drawn on it and was quite cute. Both the gift box and the llama paper could be repurposed so huge brownie points awarded there for sure.

As I peeled back the llama paper, there were two postcards sitting on the top of the contents. The first one was an orange one detailing the contents of the box (which I deliberately avoided looking at so I didn’t spoil my surprise). The other one was blue, with llamas on, along with the words “You’re the llama’s pyjamas”. It’s blank on the back, so that one can be kept in a collection or sent to someone to cheer them up.

Then I located the source of the smell. The stronger it got, the more unpleasant it got. It turned out to be a “fortifying green bath lotion” from MOA. The scents were peppermint, fennel and fir needle. The only smell out of those three that I like is fir needle. I loathe the smell of fennel especially as it smells like aniseed. However I’m not sad about it. You can’t like everything in every box every time right?

Next comes a llama keying craft kit that you can make yourself. It’s super cute!!! However as I have physical conditions that restrict my hand movement, my partner in Buddy Box crime, Jenna, has very kindly volunteered to make the llama keyring for me. She can have my bath lotion as a thank you for that. Strange girl… she likes aniseed.

Next comes a small sachet from “Conscious Water” which is a water enhancer. It has a hint of lychee rose flavour. It’s a tiny sachet, only 5mls but it does flavour your water. The taste isn’t unpleasant, but I don’t think that I would buy it again.

Then my absolute favourite part of the box. A pack of three llama’s pyjamas stickers! They are a decent size too so can decorate drawers, walls, folders, whatever you choose. I am a sucker for stickers I am!

Then we come to the fabulous book. It is called Believe in Yourself and is full of affirmations and things to boost your self esteem. I love it. Sat and read it though with a cuppa. Going to keep it next to my bed so that I can read it when I’m panicking. It’s invaluable.

Just some random page examples.

Finally we have the little “Blurt zine” that has uplifting things in it. It’s only four pages at A6 size so don’t expect it to be huge.

This is the first subscription box that I have ever had and on the whole, I loved it! I loved the whole experience of opening it up and finding the treasures within! OK, I didn’t like the bath lotion. Big whoop. I’m exchanging that in order to get help to have my cute little llama made for me (thank you Jenna!). We can’t expect to like everything, every time as I said. I loved this and cannot wait for March’s Blurt Buddy Box to arrive so I can tell you all about it. Take care and love yourselves people!x

Tiptoeing around chronic physical/mental health issues and pain…

Seriously. Enough already! People need to stop tiptoeing around these issues. I am quite open about the fact that I have severe physical health issues and also mental health issues. I’m very lucky to have a small, close knit group of friends who understand what I am going through because they, like me, have seen the film and got the t-shirt. They really help to keep me from losing it.

I can talk to them. Every single day we can talk about what ails us. We can talk about our pain safe in the knowledge that someone is going to be there to hold us up and give us the love and support that we need at any given time. With our mental health issues too. We can talk about our bogeymen and our demons without anyone judging or laughing at us.

Yet if we talk about any of those things outside of our group, then eyes get rolled and people tut. We are accused of moaning and complaining. We are told that we should suck it up and suffer in silence. People who do not understand will tiptoe around these issues and expect us to bury our complaints and tiptoe around the illness and it’s symptoms. Well hell no!!!

Enough already. People can bitch to the world that they have a cold and how ill they feel. Yet we must suffer in silence and on top of that, also sugar coat what we say so that it’s palatable for other people to swallow.

Enough. We should not have to hide how we suffer just to make other people feel better. Like now. I’ll tell you that it feels like all my muscles are wrapped in barbed wire and each and every one of my nerves feels like they have been dipped in acid. To cap it off it feels like little men with crowbars are trying to prise open my joints and I have a pride of lions chewing in my lumbar spine. That’s pretty much every day for me.

Oh, lets talk about the elephant in the room – mental health. I have just about clawed my way back from being on the edge of a nervous breakdown. I’m thinking about things and I feel so physically sick that my mind is fractured and shattered into thousands of tiny pieces. Paranoia haunts me. I feel like I’m a useless fat lump. I hate myself. PTSD from a lifetime of abuse from the two men who should have loved and protected me more than any others. That rages in my mind. Bipolar type 1 also rules me. But I have to fight as hard as I can. They will not beat me. Those men took my innocence but they will not take my life.

So anyone with chronic health issues, hear me. Be loud and proud. You don’t have to sugar coat how you feel to make other people feel better!