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

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

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.

A polite request…

I take a lot of medication. A real lot. When I put in my repeat prescription request at the end of the month, it takes me over five minutes to finish reeling off the list to the doctors’ answerphone. I’m sure that the answerphone sits there, tapping its metaphorical fingers on the desk and says, “For hell’s teeth woman would you hurry up?” 

The pharmacy in my village kindly pick up my prescription for me, as they know that I am virtually housebound. My carer then goes down to the pharmacy to collect the prescription 4-5 days later.

What’s my problem, you may ask? Shouldn’t I be grateful that my pharmacy does this for me? I am, I truly am. But what I’m not grateful for are the constant judgements from the staff. If I’m started on a new medication, which is sometimes unavoidable due to my multiple pathologies, my carer tells me that much clandestine eye rolling and muttering goes on between the staff. “More medication?” “This woman keeps us in business!” and other hurtful comments. Do they think I don’t know?

The most humiliating comments however, did not come from my local pharmacy. One time, I had to see my GP as my pain had been out of control and I’d also developed one of my regular ear infections. I’d been prescribed antibiotics and steroid ear drops, as well as my big list of normal medication. I had to get some food for dinner, so stopped off at my local Tesco on the way home and thought I may as well just make use of the pharmacy there and collect my prescription when I had finished my shopping. Most times my carer will go shop without me, as it’s much quicker. But this time I came too.

I dropped off the prescriptions at the pharmacy desk and watched the assistant’s eyebrows shoot up into her fringe. No attempt at professionalism whatsoever. I flushed bright red and off we went to get my groceries.

When I returned, the same assistant announced that I had to wait for the pharmacist as she wanted to speak to me. I am not good in crowds and the longer we had to wait, the busier the place was getting. After thirty minutes, the pharmacist stomped along and was holding a big bag. I held out my hand but she barked, “Not yet missy!” and began quizzing me at the top of her voice about why I took these medications and how long had I been on them and did I need them? I felt utterly humiliated. She was talking to me as if I was a drug addict! People were staring at me. I had to justify myself to some thoroughly unprofessional woman who withheld my medication with absolutely no justification just to humiliate me. Maybe my own pharmacy is not so bad after all.

Inside my head…

WARNING: POST DISCUSSES SEXUAL VIOLENCE AND DOMESTIC ABUSE.

Yesterday morning was not pleasant for me. I ran out of my psych meds the day before. As a result, I spent most of yesterday sobbing and gibbering like a total wreck. Why am I on these meds? They are a result of the years of abuse I suffered. Blogging about this is not an attempt to grab attention. It feels cleansing. Cathartic almost. Anyhoo, it’s my blog so I can post what the hell I like really.

Also, I had several flashbacks which were very unpleasant in nature. I almost lost it completely at one stage. My flashbacks had been easing off and prior to yesterday, I had not had one for several weeks, which was major for me.

The first one was a particularly violent one. I was standing in the kitchen, taking a drink from a can of Coke. I’d just finished a cigarette and needed to get the taste out of my mouth. (Cheap duty free cigarettes – nasty) As I placed the can down on the counter top, my ex came crashing through the front door, completely drunk. He wanted sex and started pawing at me in the kitchen. I pushed him away, and picked up the can to take another drink. He slapped the can away, and it went skittering across the floor, spinning as it went. Then he punched me square on the nose, and my nose felt like it exploded. The blood was pouring like a tap on full flow. It was terrifying. Then he pushed me to the ground and started to pull me round the kitchen by my hair. He tried dragging me to the living room and the sofa but I just curled up in a ball. Would he have raped me if he got me to the sofa? I have no doubt, as it happened many other times. This time he was content to just kick me until he had cracked two of my ribs. He then wandered into the living room to watch porn as I lay bleeding, sobbing and shaking on the kitchen floor.

Another one was when my youngest  child was almost one. My eldest was watching a favourite TV programme when scumbag came staggering in and switched the channel over to football. (to me, your kids come first!) My eldest then burst into tears and begged scumbag to let him watch the tv. Instead of doing the right thing and switching the TV back over, he raised his arm. I leapt up and stood between them. As a result, well, I’m sure you can guess. I ended up with a black eye and a split lip. Better my than my child though. Any day.

I was so angry! These patches of darkness had invited themselves back into my head without my consent. As a result, I felt really shitty and low for the rest of the day. Fuck you PTSD!

I’ve been better this morning, but they are still there. Bubbling away in the corners of my mind. So that’s inside my head right now. It is not a nice place to be.