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

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 Take For Granted…

There are many things in this life that we all take for granted and are not in the slightest bit grateful that we have the ability to actually do them and do them without even thinking about it.

Little things like brushing your own hair and brushing your own teeth are so underrated… until you cannot do them by yourself. I cannot brush my own hair. My carer is awesome, but has so much to cope with that little things like my hair get forgotten about. Then I end up feeling guilty that I have to ask. Then half an hour later I have to ask again as it has been forgotten and so on and so on. I end up in floods of tears as I feel like I’m nagging for something that is so simple that is so simple, I should be able to do this for myself. Yet I can’t. I try to lift my arms up to get my hands to my head and my shoulders crack and searing agony shoots across the top of my body. My shoulders will not move more than an inch before they crack and pop, and if I’m not careful, they will dislocate. That, my dear readers hurts like a bee-otch I can tell you. I can’t brush my own freakin’ hair and I hate myself for it. I feel so freakin’ useless because of it. I really miss just being able to lift up the brush, style and go.

Brushing my teeth. That, like most of the hygiene related tasks that I can relate to is so difficult. On the good days when I can stand at the sink, I have an electric toothbrush, but when I can’t make it? I have to use listerine strips.

All of these little things. Hygiene, dressing, getting to the loo and even pampering yourself. Little things that you take for granted when you are “healthy”. You simply do not realise just how much you miss them until you can not do them, and the effect that this can have upon you as a person can be quite devastating, it really can.

I miss ironing. Yes, I know that you will all recoil in horror, but I genuinely did love ironing. I would put on some classical music and happily stand there till it was all ironed. Socks, underwear, towels, the lot. Even something as mundane as housework. Even things you hate (for me that was hoovering) but ironically I even miss that.

I guess that my point here is that you do not realise just how valuable little mundane aspects of your life truly are. Things that you would do without even thinking about it. Spreading your own butter on a piece of toast. Opening a can of fizzy juice. Those are the kinds of things that you do not miss until they are no longer a part of your everyday life.

I’m slowly learning how to cope with this aspect of my illness, and every day that passes, I become a little more adept at coming to terms with what I no longer have the ability to do due to my illness. I’ll never be completely over it but in life, we must learn to adapt when our circumstances change and we cannot prevent it.

I guess that what I am trying to say is this. Never, ever be upset or ungrateful about little things. Be glad, be happy that you can pick up that iron or push that hoover. Be glad you can make your own cup of tea or coffee. Be glad you can stand in the shower and not have to sit on a chair and have someone wash you while you are there.

Give thanks every day for the small stuff. Never ever lose that, and always love your life.

Well, I guess that is all for this time so I’ll finish here.

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

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.

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.

Difficult few days…

The last few days have been both physically and emotionally difficult. As much as I have my boys, and I would crawl over broken glass to give them what they need to be happy, I have to fight many demons to be able to do it.

My mum died 26 years ago. I was 16 years old. The pain has never gone away, but it has become easier to bear. There are three times when I really have to fight not to cry though. They are her birthday, christmas and when I am ill. So this christmas there have been two out of three. There have been a couple of nights where I have fought to hold it together in front of the boys, then once they are asleep, let rip with quiet tears. I miss her so much.

My pain has been at almost uncontrollable levels. Moving even short distances has been so damned difficult. My knee popped out but thankfully went back in on its own. No way I’m going to A&E on christmas eve! All I wanted was a cuddle from my mum.

Yet I did it. I gave my boys a wonderful day. They understand why I can’t wrap presents neatly. They don’t care. Their gifts are shredded so quickly, I don’t think it really matters! My friend came and cooked Christmas lunch (I can’t use the oven) and ate with us. It was wonderful.

Sure, I didn’t have butt loads of presents. We didn’t go out anywhere. But what I have is the image of my boy’s smiles imprinted in my heart. That is the best gift of all!

What it’s like being me…

I’ve lain awake for most of the night. Every time that I nodded off, I would move in my sleep and the pain would flare again, searing through me and igniting every single receptor in my body as it journeyed through.

I’ve been asked before what the pain feels like. It fucking hurts, that’s what it feels like!

I’m being unfair. The pain changes and shifts. It mutates as it travels through my body. It can feel different in the same part of my body after five minutes. It ups and downs. It travels to different areas of my body at a moments notice. Right now it is in my hips and shooting all the way down my thighs and into my calves. It is in my back. It is in my arms and my shoulders. I’ve even got nerve pain in my face. I think my hair is probably the only part of me that doesn’t hurt right now. It sucks donkey balls. Yet you can guarantee in ten minutes time, the nature of the pain will morph and it will change where it wants to be again. As always.

This insidious pain rules my life. It has made me dependant on medication to function on the sub-normal level that I function at. It takes over. Hyperalgesia has taken up residence and it does not seem to want to leave. Allodynia has made things really difficult. The slightest touch from anything hurts way more than it should. Hyperasthesia and parasthesia have also taken up residence with me. I hate wearing clothes. They hurt. I’m not ashamed to admit that when I don’t have to go out, I spend my time naked. Anything that makes things hurt a little less.

I’m exhausted. That feeling never goes away. My head is constantly fuzzy and I have to fight through the mental cotton wool to achieve any kind of clarity. Some days, that fog is stronger than I am and I struggle to make even basic sense of things. I feel as if a headache is lurking around the corner constantly and it will spring on me at a moment’s notice.

I am rocking a bloated Buddha look at the moment, thanks to my IBS. That makes me play poo roulette. Spin the wheel… is today going to be the day I get to go?

As I’m writing this, my legs are twitching and moving. This drives me crazy. Restless leg syndrome is a pain in the ass.

I bruise so easily. The slightest knock and I end up with a livid purple blob that takes ages to bugger off!

My joints are so freakin’ bendy, I feel like a stretchy doll at times. Yet as bendy as they are, there are certain joints (mainly fingers, knees and shoulders) that will pop out of place. Oh boy, what fun. My skin is dry and stretchy too. I swear I keep Lush in business the amount of body moisturiser I use!

Lest we forget, there is also my POTs. That is a special joy all of its own, as anyone who has it will tell you. Damn, I could go on for ages about the problems I have and how they make me feel. 

This is just the physical issues. My mental health? Now that’s a whole other blog post…