Please Wake Me Up From This Nightmare!

Good Morning Bleeps.

I will continue from yesterday's blog where I told you about my awful A&E experience and lack of care for my poor head.

I woke up on Friday (post LP 3 days) and because I had been laying down all night my head seemed to be OK. I still had the "swishing" noise in my ears but the pain seemed to have eased off. Phew!

Phil went off to work after I assured him that I was OK and he didn't need to worry. After showering I was right back at square one, holding my head and crying with the pain. I had my Mum with me who said I needed to call the hospital again and speak to a nurse where I had the test done.

I did that and cried as I explained over the phone my level of pain. She said it definitely wasn't right but she would go speak to "sister" and asked me to hold. She came back to confirm her original statement that my head pain was not right and she told me to "go immediately to A&E". I told her what happened the day before and explained that I couldn't face going back there. She told me to come there instead.

I didn't want to pull Phil away from work again (he had already been with me for the whole afternoon the day before) so I called my daughter Kylee to see if she could drive me to the hospital. Unfortunately she was two hours away and although she offered to come and get me, I couldn't stand to wait as the pain was so bad. I told her I would figure it out and not to worry but she obviously was worried because she called my other daughter, Kassidy, who phoned to say her boyfriend Matthew would take me.

The car journey to the hospital was pure torture, not because of Matt's driving (he is actually a really good driver for a young guy, not a crazy lunatic at all) but because every bump in the road or turn of a corner made a pain shoot through my brain. It was like getting hit in the head with an axe and I cried the whole way there.

We walked into the "urgent care" department to be told that they only had a GP on staff and I should have gone to A&E and not there. I calmly and politely explained to him that I was TOLD to come there by the nurse but what I wanted to do was reach across the desk, grab him by his tie and strangle him with it. I was getting fed up with being dismissed but I knew it wasn't his fault so I resisted. I have to say that in the past I have always wondered why there are signs everywhere saying that you can't abuse the NHS staff, what sort of person would do that anyway? Why do they actually need to put up posters warning that this behaviour wouldn't be tolerated? Now I was beginning to not only understand the need but I kept looking at them, telling myself "don't hurt the staff, it's not their fault, don't hurt the staff, it's not their fault". I totally understand the need for the posters now because when you are in pain and nobody is listening you want to freak out, at least I did.

I lay across chairs in the waiting room, my head on my Mums lap. I cried like a baby while she stroked my forehead. I lay there thinking (through my tears) that when you are sick and in pain, you never get too old for needing your Mummy. I knew it was killing her seeing me in that state, I could see it in her eyes. A man sitting across from me kept glancing over at me and I knew he felt bad that I was hurting too, I could see it in his expression of sadness. Usually I would feel embarrassed by my lack of social etiquette (I mean, who lays down in public other than a bag lady?) but I couldn't deal with the agony I was in and I didn't care who stared.

Eventually we were called through to the Doctor. He was asking me questions about my health and I tried to answer him the best I could. After a little while he asked about any medications I was on. I told him that I take blood pressure pills and he snapped "so you have high blood pressure? This is the kind of information that you need to be telling me". I snapped right back "well excuse me if I forgot to mention it but I can't think straight right now with this excruciating pain in my head". I think he realised that he was less than kind because his whole demeanour changed at that point. Also, my Mum threw in that she was from Florida and the care in America is so different from what I had been getting. Up for the challenge Doc?

I asked him directly for a blood patch. I told him what had happened the day before and how nothing was touching the pain. I took out my mobile phone and read him the text from my Aunt who is a midwife in England to PROVE that we do in fact do them here. Guess what? He never heard of it either but to give him his due he went off to speak to the Neurologist on call.

He came back to tell me that they would not be doing a blood patch, that it is only effective half of the time and that IF they were going to do anything then they would usually treat someone like me with a caffieine drip. Um, go on then?! No, instead out came the prescrition pad and he started to write it out for paracetamol and Ibuprofen. I once again (can we say broken record?) explained that NO PILLS WERE WORKING and that even the Morphine and Codeine that I was given the day before didn't touch it (everyone knows that Morphine is awesome for pain, right? Thought that would get his attention). He told me that I shouldn't have taken morphine or codeine because they can give you a "rebound headache" that is worse.

WHAT????? I was given codeine to take away from A&E the day before from Doctor Fantastico (sense the sarcasm). Who was I to believe?

I need to digress to tell you something that had happened the day before with the first A&E Doctor. When he came to tell me I was going home with no blood patch, he had said to me what that he had called the hospital where I had my LP and the test results on my blood were that my protein was normal. He went on to add that this would indicate that I don't have MS. Um, I'm sorry but since when are YOU my Neurologist? Who the hell asked him to look into my results? I said that MY Neurologist had said the results would take a while so how was he able to see them already? He said "Oh the other sample that looks at the bands isn't back yet". Deep breath Karen, punching Doctors in the face is generally frowned upon.

Anyway back to my story, I looked at the Doctor and repeated that the pills don't touch the pain. I was losing it, I felt so alone and helpless. He told me that if it was no better by the next day to come back. COME BACK????? For what? He told me to call my GP as that would be the "best route to the medical team" if I needed to come back to the hospital. Oh yeah, because everyone knows how great hospitals are on the weekend. Didn't I just read in the news how you are more likely to die if you get admitted on a weekend? No thanks. I looked at him and said "I won't be coming back, there's no point". He wrote down the GP after-hours on the prescription anyway. I didn't bother to get it filled, useless.

I came home and lay back down. I really was on my own with this one. I suffered the whole weekend, I got up only when I had to and spent the rest of the time drinking lots of coffee and resting. Phil's birthday was on Sunday and it was a total wash-out. I had planned a night up in London and dinner at Heston Blumenthal's new restaurant (where trying to get a reservation is like trying to find rocking horse poop). Just like Valentine's Day, this too had to be cancelled (although I have been able to reschedule it for March).

Monday morning I got a call from my Doctor's office to say that they had been contact by the hospital and they were concerned about my blood pressure and could I come in to see the nurse. I told the lady on the phone that the reason my BP was 160/110 was because I had been in pain (and still was) and I briefly told her what had happened. I told her I couldn't come in to see the nurse because I was still unable to sit up. She told me to come in when I am better. Whatever!

Yesterday I had to drop my heart monitor back up to the hospital and by the time I got back home I was back in agony. Diane (my sister) called me just after I had got in and I was sobbing down the phone to her. It was a week ago that I had this test done and I am still suffering so very much with the pain in my head. How much longer can it possibly go on? All the time I am laying down it doesn't hurt but when I walk, cough, laugh, sneeze (that kills!), talk loudly or really function at anywhere near normal then BAM head pain that knocks me back on my bum.

I need my life back, I have to be able to function like a grown up, I have children that need picking up from school, I have to work, my house is a mess and the cupboards are bare because I can't go shopping. It is a nightmare, one I need to wake up from soon!

I would like to add here that it was mentioned to me that my blog might scare other people that have to have a LP. I am only telling MY story. This is MY truth, an online diary if you like. I am not going to sugar coat it or sprinkle candy on top because then I would be lying. Not everyone will have this experience, there are many people who are lucky and have no after effects from a LP but sadly I wasn't one of them and I continue to be in pain.

So enough about me, how are YOU?