I do some really daft shit when I am half asleep but last nights efforts beat anything I have managed previously.

I have spoken at length on numerous blog posts about my dry eyes, they are worse at night and only the other week I had another episode where my eyelid stuck to my eyeball and caused a corneal abrasion that was fucking agony without a word of a lie. I have been religiously putting in my eye drops daily to prevent that situation happening again but this isn’t full proof and whilst the medication is building up in my system it is till very likely to happen. So when I woke up last night and felt a little tug on my left eye lid when I tried to open my eye I knew I needed to act now to ensure I prevented another corneal abrasion.

I stumbled into the bathroom, whacked on the light and fumbled around trying to find my eye ointment. The box was empty so I grabbed the tube that had fallen underneath. I pulled my lower lid down and started applying the product as I looked into the mirror. Even in my half asleep daze it suddenly occurred to me what I was putting in my eye was completely the wrong colour.I went from semi conscious to wide awake in a heart beat!  It was too late it was already in and then the pain hit, the type of pain that hits when you have just put Blistex Lip relief cream in your eye. Its main ingredients being Camphor and Menthol. My eye ball was now on fire and all I could do was pray that I could wash this shit out.

Now to be honest the tube didn’t look like this however the product I managed to apply to my eyeball is no longer sold in that packaging. The old blue and white metal tube with the bright red lid is the one I had lurking on my bathroom shelf. I didn’t even know I had a tube of this stuff a it has been an age since I used it. I can’t believe that it was underneath the empty box of eye ointment, talk about bloody fate.

I screamed as the menthol and camphor really began to bite, I got a flannel popped it on my cheekbone and started pouring water into my eye to try and clear the greasy ointment from it. For a few seconds it would feel ok then I would blink and then the burning would start again. Despite me screaming in pain all I got from Mr Myasthenia kid was snores. I kept pouring cold water into my eye, I grabbed some of my artificial tears to see if they would help rinse the lip cream out of my eye. As I did so Dembe charged into the bathroom carrying his bunny and wagging his tail. Although endearing it didn’t help the situation at all.

After 20 minutes of continually washing out my eye it stopped stinging but I was left with the feeling of a “Minty Fresh” eye ball which is bizarre to say the least. Every time the cold air hit my eye, it felt cold. It isn’t something I would recommend. I was amazed that I didn’t end up tasting the stuff as that is what normally happens with eye drops.  I found the mislaid tube of Hycosan eye ointment which would have been lying side by side with the Blistex and put that in my eye. I then stumbled back to bed in my soaking wet t-shirt. Amazingly I went straight back to sleep.

It is now 7 hours later and my eyeball still feels “Minty Fresh” it doesn’t hurt it just feels cold. My vision is fine and I haven’t had an allergic reaction to it which is a blessing seeing as though I tend to react to most eye ointments. I am allergic to Hycosan and only use it when my eye feel’s like it is starting to stick to my eyeball. 

I think I have got off relatively lightly and thank my lucky stars that no serious damage was done. I will now make sure that there is nothing remotely similar in the basket where my eye ointment is kept that could be applied to my eye by accident. I would love to say it was the first time I had done something stupid whilst half asleep. A few years ago now I managed to grab my bottle of oramorph ( liquid morphine) , remove the child proof cap and drink from the bottle. Mistaking it for my bottle of water. As soon as I realised what I had done I ran to the bathroom and made myself sick which is difficult when you have a virtually non existent gag reflex. I then stayed up for the rest of the night to ensure I hadn’t overdosed on it. It was really scary for a few hours. Ever since then I have ensured that my oramorph is kept in its box and out of grab reach for me whilst in bed. 

It amazes me how I can function half asleep and manage to get myself into so much mischief.  

Raynaulds Phenomenon / Syndrome / Disease

My memory is shocking, particularly over the last year so I can’t remember if I have written about this before or not. Last night when we got home from dog training ( sat in an open Barn with temperatures just above freezing ) I took off my gloves to find my hands looking like this.

The photo was taken at least 10 minutes after we got home, as I suddenly thought whilst taking my make up off, “I really ought to take a photo of this because this isn’t normal”. When I first took my gloves off my fingers looked like they had been scalded they were so red. What shook me was the straight line just beneath the knuckles on my hand ( which had gone by the time the photo was taken) but you can sort of see the remnants of on my left hand. It looked so strange that I couldn’t help but keep examining them. It was only as I finished removing my make up that I realised that a photo could finally prove what I have been telling doctors for years, that I have Raynauld’s Phenomenon / Syndrome / Disease. For years I have had this condition mildly but last year it  ramped up a gear, weirdly being at its worst during the months of July and August – the height of summer.

My hands took an age to warm up, well the whole of me did. My legs were frozen despite wearing tights under my jeans, a long coat, knee high Dublin River Boots and multiple layers on my top half. I also sit with a blanket over my legs to ensure I stay warm. So its not like I don’t dress for the weather. I have even been known to secret a hot water bottle on my person during the lessons.  I hadn’t been uncomfortably cold until the last 10 minutes of the lesson. I had been crocheting all the way through but had to give up as my hands had really started to hurt and become difficult to manoeuvre. It took a good 3 hours in bed with my electric blanket on it’s highest setting to warm my legs back to normal. I have been the same after being exposed to changes in temperature ( it doesn’t even need to be cold weather) for as long as I can remember. When we had a bath ( we removed it as I wasn’t safe climbing in and out) I would get in it after walking the dogs ( when I was well enough to) as even when I had been walking, well wrapped up for an hour, my legs would go white and become like blocks of ice. 

My legs have always been the most painful when exposed to drops in temperatures. They take hours to warm and it is very painful. When I say drops in temperatures, I mean even the slightest things like a cool breeze on a summers day, the sun hiding behind the clouds for a few minutes, being caught in a blast of cold air from the air conditioning. These are all enough to set me off. It has come to the point now that when travelling in the car no matter how short the journey, I have a blanket over my legs. It is the only way I can limit or stop the pain the drop in temperature will cause. It also stops the rows with my husband when on a sweltering summers day I am begging for the air conditioning to be turned off in the car as the draft it is creating has set my legs off.

I have spoken to my doctors about this for again, as long as I can remember. I am greeted with blank stares. They can’t explain it or they just decide it is just another one of my myriad of weird symptoms that are possibly all in my head. You know with me being female, I am obviously bored and just crave attention from the medical profession. I love being poked and prodded wasting my days in hospital. Honestly who enjoys that shit ? So as usual when I am greeted with blank stares or the refusal to acknowledge the symptoms I just leave it because life is hard enough when you have the diagnosis of PoTs and EDS. For many doctors that just translates to hysterical female patient. They don’t believe it until they see my heart go nuts on a monitor with the slightest of postural changes or after they have seen my bendy body tricks. Some of them can’t understand how someone can be in pain all day everyday, with no break. Well I am here to tell you it’s possible, only because I know no different. I can’t understand how people can not be in pain everyday or wake up feeling like they have slept. I just can’t remember the last time I felt like I had slept.

For years my hands have been going pale and my nail beds would go blue. I have even had it where one hand is a normal colour and the other is paler with dark blue nail beds. I have even shown doctors this and been told I just have poor circulation. Which yes I agree with due to PoTs I do have poor circulation. But they mean peripheral circulation not whole limbs, like legs.

This last summer I started noticing the tip of my nose kept going white. It was so white you could see it through foundation. It looks like I have drawn a white heart onto the end of my nose. Then when the whiteness goes my nose goes a deep red and starts to sting as the circulation comes back. Now it is quite difficult to capture photos of the tip of your nose going white so you will have to bear with me, with these. However it is more obvious in the last photo with how white it has been when my nose flushes red.

The 2nd and 3rd photos were taken 5 minutes apart. The first photo was taken the day I had first noticed how white the tip of my nose was. I also had a bad hormonal breakout when these photos were taken! thankfully since changing up my skin care regime and taking some supplements my skin is much clearer although I still get the odd breakout – menopause related.

My ear lobes are also prone to becoming ice like and white – but its almost impossible for me to get a photo of my earlobes and it doesn’t always happen when hubby is in the house or that I can be arsed with getting a photo. I mean it’s not as if I haven’t got any other health stuff going on.

With this possible Raynaulds ( I say possible because I am not going to self diagnose although I believe that’s what it is ) it is the pain it causes that is the most difficult thing to deal with. It’s what I call a down to your bones pain, no pain relief will help it just never has tackled that pain be it morphine or paracetamol. The only way to get on top of the pain is to apply heat. Which means if you are out and about and have no access to hot water bottles or an electric blanket the gnawing, throbbing deep in your tissue pain it will just get worse. Which means by the time you can apply heat it will be hours before the pain is under control. Get  exposed cold again, even just a little bit within the next 24 hours and expect it to all flare up again as bad as it was initially. That is the situation I am currently dealing with. On top of being tired from last night which then impacts my ability to maintain my body temperature. So I am now wrapped up indoors like any normal person would be for venturing outside the house. Very shortly I will be getting out my heated throw so I can cover my legs with that as they are resembling blocks of ice. 

It is just yet another thing that is escalating on top of all the others. 

For more information on Raynaulds Disease