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!


Chronic illness, panic and exhaustion…

I’m seriously exhausted. My eyes keep on closing of their own volition and my mind aches with tiredness.

I’m also caught in the middle of being the most worried that I have ever been. Someone that I love with all my heart and soul is suddenly ill and I’m terrified. This person is my soulmate and my world. The thought that there may be something wrong with them is filling my soul with dark, sick anxiety that is destroying me from the inside. I wish it was me and not them.

My pain has been really bad today and my kneecap dislocated this morning so I have roboleg (my leg brace) on. I don’t care about my pain today. I only care about the one I love being OK.

Please, let them be OK.

Just don’t move…

I’m exhausted. I’ve had about two hours of broken sleep. Fuck you pain for keeping me awake like this, what have I ever done to you to deserve this?

I’ve lain awake feeling like every single nerve ending has been dipped in acid. Everything burns and the pain is mind blowing. It really is. Even my ritual waiting until the kids have set off for school and screaming fuck, fuck, fuuuuuuuuuuck at the top of my voice has not helped.

My painkillers I take four times a day. I have to, otherwise I don’t function. The downside of this is that between 9pm and 7am I have no pain relief. Nothing. Nada. Zip. So painsomnia is a huge part of why I don’t sleep.

I’m so fed up of this. Right now I feel like one giant, raw nerve ending that is on fire. The slightest movement sets everything off and I feel myself ripping over the edge and free falling through a world of fire and agony.

I’ve begged my doctor for help and been made to feel like a junkie for asking. People with chronic severe pain are not junkies. We are just desperate for some relief from this hell we live in.

So Im lying here feeling like hell and gritting my teeth. I’m OK as long as I just don’t move.

To shave or not to shave: That is the question…

Most, if not all of the women I know are slaves to Venus razors, Immac cream or waxing strips. The second even the slightest bit of hair has the audacity to poke it’s head above the skin horizon, women dive screaming for their weapons of choice in the war on hair removal.

The whole attitude towards body hair really does piss me off. Women who chose not to remove their body hair are described as dirty and disgusting. Mainly by men, but women also join in on the abuse caravan. Why is this? Who made the rules? Who set it in stone that it was an obligatory part of a woman’s routine to shear every possible follicle of body hair from their bodies?

Extensive poking around has lead me to discover that the routine of body hair removal is not a new thing. It has been around for thousands of years.

Removing hair from the head and face of men was originally not for vanity purposes but for survival. It is known that not only cavemen did this but ancient Egyptians as well. There have been speculations that for safety, scraping off the beard and hair on the head would take away the advantage of an adversary having anything to grab onto. For cavemen it was possibly known that those with less hair had less mites, hence scraping the hair from the face.
They didn’t have Gillette or Bic back in the day…They would take sharp rocks, sea shells or flint blades and literally scrape the hair from their faces. I’m sure not only hair came away…um…OW!!!
The ancient Egyptians were known to have better forms of razors made of flint or bronze. They also used a method of depilatory called sugaring. A sticky paste (bees wax was sometimes used) would be applied to the skin, kind of like waxing. Then a strip of cloth was pressed onto the paste and yanked off, removing the hair.
There is a rumor going around that women have only been removing hair from their legs for the last hundred years or so. Well that is true for American and European women. The fact that removal of body hair for Europeans wasn’t popular gives sense to the fact that American women didn’t shave, because most of the immigrants were European. However in ancient Egypt, Greece, and Middle Eastern countries, removing body hair was important. In fact these women removed most of their body hair, except for t the eyebrows. Egyptian women removed their head hair. Having hair down under was considered uncivilized. Now any men reading this should know the women were not the only ones to remove their pubic hair…
It was also considered uncivilized for men to have hair on their face. Having a scruffy face meant you were a slave or servant, definitely of lower class. Is that why corporate guys and politicians always have clean shaven faces? Do we associate a clean shaven face with someone powerful?
In the ancient Roman Empire, hair removal was often seen as an identifier of class. The wealthy women would remove their body hair with pumice stones, razors, tweezers and depilatory creams.
There was also another technique used called threading. The women would take some string or yarn and lace it through the fingers of both hands, then vigorously rub it on the area therefore tugging, ripping, pulling the unwanted hair away…
We do know European women did not engage in body hair removal during the middle ages. In fact it wasn’t until Elizabethan times that Euro women began the practice of hair removal…except they didn’t remove leg, armpit or pubic hair…they removed their eyebrows and the hair from their foreheads to give themselves a longer brow.
This look was so fashionable that it is said, mothers would often rub walnut oil on their children’s foreheads to prevent hair growth. They were also said to use bandages covered with vinegar and cat’s poo. Gross!
The Perret razor was invented in the 1760’s by French barber, Jean Jacques Perret. It is an L-shaped wooden guard that holds the razor and is supposed to reduce the damage done to skin (ex: cuts!) when shaving.

However it wasn’t until the 1880’s that a much safer razor came along. Meet King Camp Gillette. He wasn’t a king, that was just his name. He was an American businessman, and in case you didn’t recognize his last name, he was the inventor of the Gillette razor. 
In 1915, the first women’s razor came out. It was in this same year that an edition of Harpers Bazaar magazine came out with an issue featuring a model wearing a sleeveless dress and *gasp* no hair in the armpits! Thus started the ritual we have today of shaving away unwanted hair.

I’ll freely admit that I do not shave my legs or under my arms. I do not smell and bathe every day. So those who cry that having underarm hair makes you stink? You’re talking utter crap. Why don’t I shave? I have a number of physical conditions that cause severe chronic pain. Not only can I not lift up my shoulders to shave my armpits or bend down to shave my legs, the additional pain of a razor scraping away on my skin feels like somebody is slowly pouring acid on to my skin. I’m sorry, but I’d rather have body hair than that any day of the week. It’s sheer hell.

When a guy shouts out to a girl who does not shave her body hair, he is body shaming her in an unacceptable way. When a woman does it to another woman? It’s even worse! We should be respecting eachother’s choices, not belittling them! I mean when famous women dare to display armpit hair, such utterly vile things are said in the press it makes you wonder whether these women have flashed their pit hair or butchered a box of puppies! It’s only hair! Please get a grip can we people???

I remember when…

I’ve been having some very down days recently. The kind of days where my self hatred has been slithering up and around my body like vines around a column. But the vines are toxic. They leech their poison into me and my mood becomes blacker and blacker. I can feel it happen.

Ever since I became ill seven years ago, I’ve had to face up to the fact that my life has changed dramatically. I’ve gone from being a happy, active woman to being a broken, unhappy cripple who cannot even lift her shoulders up to brush her hair. The joints either dislocate or stop me through the level of pain. I was a nurse for 15 years. Every day of my working life was dedicated to helping people and never once did I think that I would be on the other side of the fence. It hurts. A lot.

That makes it even more difficult for me to cope with the changes that have happened to my body. I miss my job so much. I miss being able to soothe someone’s pain. To make a difference. I was damned good at my job and not being able to do it any more really does hurt like hell.

I remember when I could go on long walks with my children. Before my physical and mental health turned me into a crippled agoraphobic. I used to chase the boys playing tig and we would laugh and squeal. I miss that so much.

My toxic thoughts are telling me that I am letting them down because I cannot do that for them any more. That I’m not even half the person I used to be. I remember when I didn’t feel like that. But it was so long ago, it feels like a dream.

Chronic tiredness…

If you suffer from a chronic illness, the chances are that you will know all about Christine Miserandino and her spoon theory. If you are the partner/carer of someone with a chronic illness, chances are that you will know about the spoon theory. However, those of you that don’t are probably scratching their heads and thing what the hell is the crazy woman talking about? Allow me to elaborate…

The spoon theory is the brainchild of a woman with a condition called Lupus (or SLE). Her name is Christine Miserandino. She was trying to explain to a friend of hers just how it felt to deal with chronic illness and tiredness.

You start your day with twelve spoons. Each action you do costs you at least one, and sometimes more spoons. Imagine in the morning – you can use four spoons before you leave the house (that’s is you can leave the house). By the time lunchtime has been and gone, you are down to four spoons. It’s hell. I’m enclosing a link so you can read about it should you wish to…

The Spoon Theory
I’m laying here in my bed and it is 10.10am. Already, a bone crushing weariness consumes me. The tiredness is caressing every nerve ending and making me feel as though my body is weighted down by lumps of concrete.

I want so desperately to close my eyes and drift blissfully info the realm of sleep. I already feel like I’m running on a negative spoon equity for the day. That will affect my tiredness for some days to come. But I have to keep going. I must.

Until I come to the point where I can physically go no further. My legs turn leaden and I come to a sudden halt. I slide down a wall into a puddle of tears, simply unable to move.

That’s how chronic tiredness feels. It’s horrible.

The human sinus and other issues…

That is seriously how I feel right now. See, I have a problem (one of many). Every single night, when I lay down to go to sleep, my nose blocks off and I have to breathe through my mouth. The really weird thing is that I can spend all day laid down and my nose won’t block. Then at night time… wham, it’s blocked again. Why?

It’s now 8.35am and my nose is only just starting to clear. As I breathe in my nose whistles and whines like a boiling kettle. It seriously drives me crazy. 

As I slept last night, I rolled over and my knee decided to dislocate. This is becoming tedious now. After I had popped it back in, I was in so much pain that getting back to sleep was not an option. Consequently I have been awake since 3.30am and have all the energy of a flat battery.

I did think about having a sleep while the kids were at school, but my brain just (as always) laughed at me for that! You must be joking woman says my brain! I’m just going to keep you flat out exhausted but not let you sleep. I have letters to write today. I need to focus. Fat chance.

Well, I’m going to roll my snuffling sinuses and swollen knee over to the table, finish my cup of tea and try to finish my letter. However I’m now in so much pain that the only thing I can think about is how long I have to wait until my next painkillers are due, which is not until 12.30pm. Screw you EDS.

Flare up central…

I have not been feeling particularly well for the week or so. Both my EDS and my fibro have been kicking the crap out of me.

Four nights ago, I rolled over in bed and my shoulder popped out. Oh boy wasn’t that fun. It got popped back in, but it’s still painful. I’m eating handfuls of pills like smarties. 😭

I cannot remember the last time that I wasn’t in pain. I cannot remember the last time that I wasn’t exhausted. I can’t remember the last time I felt like a human being.

But I tell you one thing. Disability or not, my kids WILL have a totally fucking awesome christmas.

What’s the point?…

Every single bastard day I try to make my limbs work. I try to function and be a valuable member of society. I try to say things that will help other people and all I will end up doing is just upsetting others people or making a situation worse.

Today, I woke up at 5am (I fell asleep at 3am) So I gave up on the idea of further sleep and just lay there and grit my teeth until my carer arrived at 7am. Then I get my beloved hot water bottles and I. An take my tablets.

This morning, I may as well have swallowed lumps of play-doh. Meds have done nothing to control my pain and my mental health is a mess right now. I’m sobbing and seeing my keypad through tears is not so easy.

The pain in my lower back is actually making me feel sick. I want to vomit, it’s that bad. My knees feel so weak that any knock or bang will just cause the knee cap to dislocate again. I’ve dislocated my finger this morning. It’s only the ninth time it’s happened. I’m used to just popping it back in now. Not going to sit in A&E for hours if I can do it myself.

I just keep crying and feeling utterly worthless about myself. Nothing that I say is any good or makes any sense. I just end up making the situation worse. I’m beginning to think I should just crawl away under a bridge and just cry alone.