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 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

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

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

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.

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.

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!