Pain of exquisite quality

I have had some truly horrible days since developing a CSF Leak but last Saturday (1st October) has to go down as the worst so far. I knew on waking up at 3am that it was not going to be a good day when the head pain started the minute I was upright. By the time I went back to bed an hour later it had already developed the exquisite quality of pounding with every beat of my heart. I hoped that by returning to bed and sleeping for a few hours would tame the beast, it didn’t when I woke again at 8am it was still with me.


I had terrible nausea on waking at 3am but I had put that down to the Oramorph just landing on my stomach wrong. Every so often Oramorph will induce projectile vomiting, even though I have been taking it for a few years now. As I rushed to get my anti-sickness meds, my mouth was already filling with watery saliva, which normally means that all the anti-sickness meds in the world would fail to stop me throwing up. I did however manage to ride it out. The same thing happened again at 8am, I should have given up there and then and gone back to bed but I am stubborn and decided I would stay downstairs for as long as I could. By 8:10am I had my darkest sunglasses on so I could continue watching the TV, I get very light-sensitive, even on good days. The sunglasses usually knock the head pain down a notch on the pain scale. The impact on my head pain was negligible, I was still careering towards a 9/10 and possibly a 10/10 later.


I hate it when I get really sick on a day when hubby will not get home from work before 10pm. It means that he has seen how ill I am all morning before he goes to work and is left feeling like he is abandoning me in my hour of need. I try to reassure him that there is nothing he can do for me on days like this as all I will be doing is lying in bed. I know what it feels like as in the time before this was our normality, I have had to leave him, when I have felt he shouldn’t be left alone. The enormous guilt weighs heavily on you but your employers don’t give a shit because at the end of the day you are paid to be at work, they don’t cut you any slack. I have to say things have got better and Jay’s work are now very flexible when it comes to me. I am acutely aware of not pushing it with them, had Jay not been sick himself last week and taken time off, I would have asked him to stay home with me.


By 10:30am I had returned to bed, normally on a rough day I would hang on in there until hubby had gone to work and then collapse when he had left. I sometimes think I am like a wounded animal not prepared to show how sick and vulnerable I am until I really can’t cope any longer. I had spoken to my mum before going to bed and explained to her that it was getting close to calling an ambulance, the only thing that stopped me was that a) I could still talk and b) I really have an intense dislike of hospitals. It’s amusing really as this morning I have been trying to get hold of my consultants secretary to organise a caffeine infusion as I am getting desperate, which means I will have to spend the best part of the day in the dreaded institution. It’s been 6 weeks this Wednesday since I last had an infusion and I can really tell.


I spent the rest of the day in bed, lying as still as I could. Any head movement provoked intense pain and another wave of nausea. By 4pm it was so bad I was starting to wonder if I had meningitis. I know it sounds dramatic but the pain was just awful. I was so out of it by that point due to the unrelenting pain the thought of having meningitis didn’t even bother me I just went back to sleep or just passed out again. You know the pain is bad when you just no longer care what happens and all you are concerned with is being left alone so you can get on with the business of just surviving.


Even back in April when I collapsed and Jay had to come home from work it hadn’t been this bad. I was also getting really confused, I started calling our dog Frankie, Travis. The name of our first dog who had died ten years ago. I don’t really remember much at all from Saturday as I think I was drifting in and out of sleep (or perhaps passing out with the pain which is one of my specialities and how I know if the pain I am suffering is a 10/10 pain). It wasn’t until hubby got home from work at 10pm that I was able to get up without being in agony. I was also starving hungry having not been able to eat all day.


My head is still not brilliant more a 6/10 than a 9 or 10 / 10 now, the occipital neuralgia is also back much worse than before. I deeply resent having to organise the caffeine infusions myself rather than have them on a fixed schedule. It seems ridiculous that someone in so much pain should have to wait for a moment in which they are well enough to hound a consultant’s secretary. The consultant’s secretary is lovely and very helpful but she can’t organise the infusions. First a prescription for the caffeine has to be signed by a doctor (she has been waiting for a doctor to do this since Friday morning, all she needs is a signature), then the pharmacy has to check they have it in stock or order it in (caffeine infusions are not a regular thing so it’s not usually a drug that is held by the hospital). Then she has to check that the unit I have the infusions in have space available on the day (I have been quite ruthless and demanded that it is done Tuesday 4th Oct because I can’t go on like this) and that there is a doctor available to oversee the treatment. It would be so much easier for everyone if they just scheduled me in like they do for anyone else who is having infusions of various medications. Sorry I am in a bit of a rant mode today if you couldn’t tell.


There are days when I really don’t know how much longer I can take this for, then the following day arrives and it’s no longer as bad. Every day at the moment though is back to being a battle. I completely get why there have been suicides due to this pain. If I was in the pain I was like Saturday every day and they were dicking me around like they are now over the blood patch, I do believe it would come to the point where that was the only option. It is a terrible thing to say but I just couldn’t go on in pain like that, the pain I deal with on a normal basis is bad enough. When it’s really bad that is when I refer to it as “Pain of exquisite quality”. There really is no other way to describe it.


Last minute update:

At just after 3pm today (Monday 3rd Oct) I finally got the phone call to say the caffeine infusion had been organised. The only way the secretary could get it organised was if I see a gp who is part of the acute care team, so that he/she can understand why I need the infusion (I have now spent an hour photocopying my notes as mine are still at another hospital where I had to cancel the appointment last week due to hubby being sick). So I am making sure I am fully prepared to fight my case tomorrow in case this gp decides they know better than my consultant. I do wonder why that on  every visit to hospital, I have to be so organised in the day and age of electronic notes? I now have a small tree’s worth of medical notes to take with me. I also made an extra copy so I don’t need to do it next time. It’s a good job I have my head screwed on, I guess you can stop someone being a Training Manager but can’t take the Training Manager with OCD tendencies out of the girl.


This PAIN that you hold is yours

“This PAIN that you hold is yours. There is not a single PAIN quite like it. Nobody else on God’s green earth can feel this PAIN, or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE” Arnold Schwarzenegger


It’s funny that since getting chronically sick nothing can quite set me off on an epic rant than a stupid inspirational Facebook quote. I probably sound like Mr Angry and I can assure you I am not. I did have a quick temper when I was younger but I have mellowed considerably with age (as I think we all do). I also don’t sit looking at things on social media to find things that annoy me. Of course I could be accused of taking the quote out of context, when Arnie said these words he was referring to the pain felt when you have given your muscles a bloody good workout.


However what do you do when it is posted out of context, no quote attribution, just a meme posted on someone’s feed? Without looking it up on the almighty Google to find the author, how are you supposed to take it? Does the poster mean all pain is good? Because I know many of you like me would beg to differ and that’s the problem when these things are displayed without context. What is inspirational to some could be considered condescending / patronising / thoughtless (please delete as applicable) to others.


I didn’t turn into the Facebook police on seeing this and tear the poster a new arsehole. Which if I am honest, depending on the day I may have done. I am in a zen like phase at the moment probably through pain, insomnia and exhaustion where I am not going with a gut reaction because I know I am probably not thinking rationally. On a bad day I may have at the very least asked the poster to explain the logic behind the post or I may have gone nuclear and not very politely asked “What the f*ck do you mean?”


The quote “No pain, No gain” can also set me off. When Jane Fonda said this she was of course talking about exercise. However this is another quote that gets misused and gets attached to all sorts of endeavours. When I was well I probably bandied around this quote as well. It isn’t until your world changes by some event be it sickness, bereavement, redundancy that a well-meaning inspirational quote can suddenly impact you in a completely different way. It can seem despite the numerous followers or friends that the poster has, that this meme has been specifically aimed at you.


I am not for censorship in any form before I get accused as such I just want to offer a perspective from the other side. A while ago I completely lost my shit with a meme that was posted by one of my friends it said


“Good things come to those who go out and fucking earn it”.


An obvious swipe at those who claim benefits but what if through circumstance you have no choice and have to claim them? Should you be made to feel ashamed that you have been made redundant / become too sick to work / became a single parent  through no fault of your own? Such is the culture in this country to blame those who have to claim benefits for not trying hard enough to change the situation you find yourself in. I love it when you challenge people on a post like that and they respond “I didn’t mean you, I meant the scroungers”. What they fail to realise is there are many people like me, in fact we outnumber the so-called scroungers but a post like that tar’s us all with the same brush.


As for the quote that inspired this blog post, you may be surprised that I agree with some of it. It is true that “This PAIN that you hold is yours.”  Pain is subjective, no two people’s pain is the same, it can’t be shared, it is your burden alone to carry. Where Arnie is suggesting the pain from a good workout, where you have pushed yourself to extremes, I am simply referring to the pain of everyday existence. I would love to feel the pain from a good workout however I won’t deliberately increase my level of pain for a short-lived endorphin rush, only for the pain inflicted to last a week rather than the one or two days from exercise.


He is also right when he says “There is not a single PAIN quite like it.” It wasn’t until I started to learn about EDS (Ehlers Danlos Syndrome for the uninitiated) that I discovered that feeling pain every hour, everyday for as long as you can remember wasn’t normal. It completely blew my mind that other people, (non EDSer’s) didn’t live with constant pain. I had been convinced from an early age that I was a moaner and complained about pain unnecessarily. That I was weak and that everyone else bore their pain uncomplainingly. To suddenly find out that I wasn’t weak, that I had been dealing with off the chart back pain for years with little more than paracetamol made me feel vindicated. It wasn’t in my head, it was real. There is no pain quite like the EDS pain I get in my joints, in my abdomen or anywhere else in my body. My pain is different even to other to other people with EDS as we all experience pain in different ways. In some ways we are like snowflakes, no one of us experiences pain the same way.


”Nobody else on God’s green earth can feel this PAIN…” again despite my rampant atheism, I agree with this statement. As I explained in the paragraph above, everyone experiences pain differently. Everyone has a different pain threshold. I am good or should I say I have a high pain threshold everywhere except my mouth. I seem to feel more pain at the dentist than I do with any other medical procedures performed elsewhere on my body. Due to the fact local anesthetics don’t work on me properly, they either don’t work well enough or I burn through them very quickly, it means the dentist surgery is a very painful and frightening place for me. Even the dentist just cleaning my teeth with cold air and water can make me scream. Yet stick a needle in the back of my head for an occipital nerve block and I will sit still without screaming my lungs out. Although I did swear a lot the first time it was done. I know of other EDSer’s that can have root canal work done without local anesthetic, they don’t bother with it because it doesn’t work. Just thinking about that makes me break out in a cold sweat and want to vomit. Even amongst EDSer’s people that are used to pain, our pain thresholds are vastly different.


Arnie and I part ways when it comes to the remainder of the quote – “or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE”  I may on a rare occasion feel pride when I have pushed through the pain and have managed to enjoy myself. However in the back of my mind I know that despite the feeling that I have achieved something I will be left dealing with the consequences for possibly weeks or months afterwards. I don’t actively avoid causing myself pain, to do that I would have to wrap myself in bubble wrap and never leave my bed. I know some in the medical community believe that those suffering with EDS develop what they call avoidance behaviors. We limit our activities and because of limiting our movements we cause weaker joints, tendons, ligaments and muscles. I don’t know of any EDSer’s that avoid doing anything, we may not do certain activities because we know it makes things worse but we don’t avoid things irrationally. I know that I can’t lift things, lifting causes me horrific back pain. I don’t walk outside the house, I use a wheelchair, I do this so a) I don’t pass out and cause myself a head injury, b) so that my hips or knees don’t dislocate, c) because walking causes me extreme back pain,  d) the effort used in walking exhausts me very quickly, and  e) my balance is shocking and I tend to fall over. It’s not an avoidance behaviour it is self-preservation.


Pain the type that EDSer’s live with everyday at no point could be described as a privilege or a badge of honour. I would also beg to differ on Arnie’s description of pain not being a curse. Pain on the levels I and many others deal with on a daily basis is a curse. It stops normal life in its tracks. It causes bad temperedness, anger, loneliness, vulnerability and sometimes a sense of hopelessness. How do you describe to someone who has never suffered the levels of pain you endure that you can not look to the future because you do not have the energy to cope with this level of pain for the rest of your life. It’s not depression (although it is incredibly common in people who suffer from chronic pain) it’s a reality. When you have used every last ounce of your strength to fight to the end of another day, who could blame you for questioning if you could do this for another 40 years or more?


Pain from exercise is short-lived and self-inflicted. If you only train a couple of days a week you would have more pain-free days than those that you suffer the normal aches from exercise. If you stop exercising altogether (I am not advocating this as exercise is good for you) or adjusted your routine so you weren’t exercising quite so vigorously you wouldn’t suffer the pain that Arnie describes.


The person that posted this on social media would have been referring to his own fitness routine and not about the pain that someone suffers with when they have a chronic condition. Maybe I have become too over sensitive to things or perhaps it is because I see things differently. Obviously the impact of this was worse because I had no clue that this was someone else’s quote, so I didn’t know the context of it. It is a prime example of why author attribution is not just important to understand the context but also to give credit for the work otherwise it is just plain plagiarism.




Trike Update

On Sunday our friend came over to look at the Trike and the Wheelchair. He has resolved the issues with the handlebars and brakes. It felt a million times better after he had fixed the issues. I wasn’t feeling such intense pressure in my back when trying to steer it anymore.


On Monday the new battery came so on Tuesday I was able to have another little go on it. What a difference the new battery made, so much more power. I am a lot more confident now and no longer need Jay running alongside me to keep me calm. He also had a go on it and was freaked out with how fast it could go.


So my first outing with the dogs is planned for Sunday. This will be the first time since 2008 I have been able to join them. I am very excited. I hope I sleep Sunday night. I will be going out whilst it is still dark so we may not be able to take picture. I do have lights for the Trike so I am hoping that they serve me well. Watch this space!