Is Anybody Listening?

Good Morning Bleeps.

I will continue on from yesterday's blog if that is OK with you because my Lumbar Puncture adventure didn't end on the day of the test.

I woke up the next day with the pain still in my back. I also had a headache but nothing I couldn't handle, it was just the hangover head I had been warned that I might get. I was more concerned and wanted to know if the pain coming from my lower back and down my left leg was normal (or at least nothing to worry about). Because of the massive pain I had felt during the procedure I was concerned that something inside had been damaged. I called the day hospital where I had the test done and was luckily put on the phone with the lovely nurse who had held my hand during the procedure.

I explained what was going on and she said that I shouldn't worry and that it was probably just some bruising. She asked about my head and enquired whether I had any pain in my neck or anywhere else. I told her that I had the headache and yes, some stiffness in my neck but only to the degree that the Doctor had warned me could happen. She reassuringly told me that my back was probably just sore but to keep an eye on it and let them know if it (or my head) got worse.

I took myself off to the hospital for my three o'clock appointment to have my heart monitor fitted. I had a bit of a car park altercation with some stupid cow that decided to hassle me from behind while I waited for a car park space. Now usually I avoid road rage at all costs (I had a bit of a run-in with a psycho that freaked me out many years ago) but this woman was PISSING ME OFF! I was sitting there, with my indicator flashing, waiting for a car space and this stupid woman was behind me, flashing her lights, getting agitated and throwing her hands in the air like I was doing something wrong. Really? REALLY?

I turned around and let her know in no uncertain terms that I wasn't in the mood for her bullying. Just in case she didn't fully understand how much she was getting on my last nerve I threw in some sign language (well, fingers really) to help express my dissatisfaction at her rude behaviour. It is just as well it happened before my heart monitor was put on because it would have probably exploded. I am usually such a mild mannered person (oh OK then, not mild but not usually a Miss Angry) but I had a sore head and a sore back and I wasn't in the mood for some stupid chick with a bad attitude and no manners.

My headache was getting worse so on the way back from the hospital I stopped by the pharmacy for some stronger pain killers. I asked for the strongest ones they sell over the counter and popped a couple right there in the supermarket. Phil got home from driving Megan home and we decided to go to the Indian for dinner. As I sat there in the restaurant my head started to really hurt. I mean seriously, need to put my head on the table, don't care if I am in a restaurant, my head is going to explode HURT. I popped more pills but nothing was helping.

By the time we got home I was in agony. I was literally in a ball on the floor, holding my head and crying. I told Phil (through my tears) that if it was like this tomorrow I would need to go to the hospital, I have never felt anything like it in my life. I thought I was going to get away with the headache from hell that I had heard horror stories about, I thought wrong.

The next morning it was no better. I was in serious pain. I couldn't sit up without feeling like I would throw up from the pain. I called the hospital and I was told that I needed to go to A&E immediately. My fellow MSers had also advised me to go in and ask for a blood patch. I needed this to plug the hole where my spinal fluid was leaking from. I was told that I felt OK while laying flat because my brain didn't realise it wasn't floating and then as soon as I was upright BAM - torture.

Phil drove me to the hospital and I cried the whole way there, holding my head in anguish. I sat in the waiting room of the A&E crying like a baby and not giving a monkey's who was looking at me. It felt like torture sitting there waiting but soon enough my name was called and I went through to a cubicle. I explained that I was post Lumbar and that I had been instructed to come in because this headache needed attention. I asked for a blood patch and was told that she had never heard of it. I was given liquid morphine but I explained to her that no pills/pain killer was working. She told me the Doctor would be with me soon and to get some sleep. GET SOME SLEEP???? What part of "I am in total agony and can not function" did she not hear?

As I expected, the morphine did nothing and we sat for hours waiting. Eventually a Doctor (junior) came in and I repeated my story. She gave me more pills (even though I told her that pills were doing nothing and I knew that I needed a blood patch) and left. In the meantime my Aunt (who is a UK based midwife) sent me a text telling me to ask for a blood patch (she referred to it as a EDBP), routinely done in midwifery for women who have a bad reaction to an epidural. I told her that I already had but that they hadn't heard of it, I had actually started to think that maybe it was just done in America (where are lot of my MSer friends live). She was outraged and told me to stand up for myself. I was trying but it is so hard when you are in that much pain.

Phil eventually got mad at all the waiting and went off to find out what was going on. They said that the Doctor would be with us soon but they were busy. We had already been there for five hours and I was still in agony at that point. I asked Phil to go home and get my Mum as it looked like I was going to be there for a while and I hated the thought of my Mum at home by herself (not that she minded). Almost as soon as he left they arrived with a wheelchair to take me to a ward.

I was informed that I was going to be put on a drip and then they might be doing the blood patch. HOORAH! Finally somebody was going to help me. I was whizzed (and I do mean whizzed, the guy pushing the wheelchair was obviously late for something because it was a white knuckle ride) to a ward. As soon as I was pushed through the double doors my heart sank and I wanted to cry. I was on a geriatric ward (every woman was at least in her 80s) and there was an air of total depression. I was greeted by a nurse who said "I told them I wasn't ready for you yet". Not exactly a warm welcome and I felt the tears welling up yet again.

I have quite a few friends who are nurses and I KNOW the pressure they are under but I am speaking here from a patient's point of view and as somebody that was in a lot of pain and I just feel that there needs to be a certain level of care and compassion. If you don't have it or if you lose it along the way then it is time to get out and find another job, that nurse would have been better off as a prison warden!

I was instructed to sit in the chair where she took my blood pressure and left. Oh well, so what if it felt like I had come to the end of the world, at least I was going to get help now. I really needed to be laying down but I had been instructed into the chair and there was a guard rail up on the bed so I couldn't get up on it even if I wanted to. I sent Phil a text to let him know where I was and before long he came back with my Mum. I had now been sat there for about an hour and none the wiser of my pending treatment.

Eventually the female junior Doctor that I had seen in the beginning came in with a male Doctor who shook my hand and told me that they wouldn't be doing a blood patch as it is too invasive. He asked me about my headache and I explained my journey to that point. He told me that I didn't fit the usual criteria for a lumbar Puncture headache as they usuually come on in the the first 12-24 hours. I explained to him that it DID come on in that time frame but that I also had a bad back and THAT pain was worse. I supposed the fact that my excrutiating pain came on outside of his text book timeline then I wasn't a candidate for help?!

So I was promptly discharged with more pills that DO NOT WORK. I was beside myself. Why wouldn't they help me? There is a procedure out there that would stop this torture and it was being denied. I have worked my whole life, I have paid my taxes into the NHS, I am entitled to care aren't I? Apparently not.

I came home and put my head down. More tears and lots of pain. I was told to go easy on the pills that I was given (codeine) and they can make you loopy apparently. I was at the point of wanting to pop them all in one go in the hope that it would stop the pressure in my head. It was unbearable. I had an awful rushing noise in my ears like I was under water and I literally felt like I was going to pass out from the pain, like my brain was going to explode.

I had been a good patient hadn't I? I had followed my discharge instructions, I was told to go to A&E if the headache became unbearable, which is what I had done. I had been there, in pain, for over seven hours and for what? More pain pills that did nothing. The only thing I could hope is that I would wake up and it would have passed. Sadly this would not be the case. Check back tomorrow for the next chapter of "our health care system is like something out of a third world country and you are basically screwed if you are in pain because nobody gives a flying fart".

So (for now) enough about me, how are YOU?