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.