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

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.

Coping with chronic pain…

I’ve had yet another shitty day of gritting my teeth, getting clammy and feeling sick because the pain I’m feeling is so severe. It never quits and it seems to delight in getting slowly and steadily worse day by day.

What really hit home for me was when my carer said to me this morning, “I’m starting to see your pain. It’s etched on your face.” I’m so tired of feeling this way. I’m so tired of feeling this way. I’m so tired of being in so much pain every single day.

Coping with it is becoming more and more of a difficult issue for me. I’m on a cocktail of drugs that would fell a rhinoceros and all that does is dull it slightly. The pain never goes away. The only thing that soothes it is my trusty hot water bottles which remain clamped to my lower back and legs. They help.

Other than that? I bite my lips and cheeks and have mastered the art of crying quietly so that people don’t hear and worry. This really does absolutely suck.

Pain sucks…

Pain, as my teenagers would say, sucks donkey balls. I have to say that this morning I agree with them.

I got just over two hours sleep last night. The gnawing pain in my lower back and my joints woke me. As I have no pain relief I can take throughout the night, I had to clockwatch until 6am when I could take my first round of this day’s medication.

I know that some of my followers will have been there. Sitting, watching the clock hands slowly crawl around until you can gleefully stuff the next handful of pills into your mouth in a desperate attempt to obtain even a tiny amount of relief. Only to realise after an hour that the pain relief you were hoping for isn’t going to happen. So you clock watch again, and the cycle goes on. :’-(

Wrapped in a blanket of pain.

I am. Both a physical and emotional blanket. I’m trying so very hard to be positive and inspiring, but it is just so damned difficult.

I knew today was going to be harsh physically as today is the day that my new pain killers start. So my old ones have stopped. Yet do I have my new ones yet? No, because my local pharmacy are a fuck up par excellence! My carer will have to go down to the pharmacy at 11am to check if it has arrived. I should have taken it at 6am this morning. Nice huh?

I’m trying very hard not to bitch and whine about my pain, but when it is so all consuming, it’s damn difficult not to.

I’m hurting emotionally too. I reached out to someone for help. They pushed me away. Ignored my cries. I feel worthless and lonely and so fucking sad.

Such a relief!

Well, I did it. Last night was the night I had to go out. Those that already know me will probably roll their eyes at me for going on about this, but it’s important for those that don’t to know this. It helps explain things. I have been suffering with a number of conditions over the last few years which have contributed to my being in a wheelchair. I am in constant chronic excruciating pain each and every day. It is sheer hell for me, it really is. Well last night I finally had my pain clinic appointment. I had only been waiting to see them for almost seven months.

Well, my agoraphobia took over as it normally does. The day went past in blur of tea and Diazpam. The closer the time got to the time to leave, I was a quivering nervous wreck. My friend sat with me and helped out with the kids. I owe him so much.

When the time came to get in the car, I was hugging the door and crying like a baby. My friend had to prose my fingers loose. 😦 Not cool. I pulled up my hood (I always wear a hoodie when I go out, no matter what the temperature is). It helps me feel like I am hiding.

When we got to the hospital, I had to fill in three separate forms and was taken straight through to see the doctor! Oh my gosh, that is almost unheard of in UK hospital clinics! The doctor even pushed my wheelchair! Normally they march ahead and expect you to magic yourself into his room. What a total shock this was believe me!

The upshot of the evening is that he listened to me! He heard me and he listened! He validated my pain and he has written a letter to my doctor which will see me starting on much stronger pain relief. Finally somebody listened to me. Finally somebody helped me!