Floating in Denial

Good Morning Bleeps.

What a crap night. I woke up at 3am and that was it, wide awake. Insomnia sucks, doesn't it? I think the worst part for me is laying there in the dark and quiet because my mind starts racing with all the things I am stressed about, right now that is a LOT.

It occurred to me last night that I have been floating down that great Egyptian river - denial!

When I went in for my brain MRI results in December I was fully expecting to be told that there was nothing abnormal to see. After all, when my Neuro thought I had MS when I was in my 20's that is exactly what did happen. I had all sorts of tests leading up to the MRI back then. One was with electrodes all over my body testing my muscles responses to electrical currents and another where the Doc put hot and cold on my shoulder blades, asking me to tell him what I could feel. Those tests were enough for him to send me for the MRI but it was clear.

When my Neuro's secretary called me in December saying the Doctor wanted to see me to discuss my results I just thought it was to put my mind at rest. That was not the case, in fact he showed me all of the white matter on my brain and told me that yes in fact, there were lesions and this was MS.

I was OK with the diagnosis, almost relieved I suppose. Sure I had some up and down moments as you would expect. I was joking about it one minute and crying the next but I was able to take it on board. When I went to see him on the NHS in January (because I was a private patient up until then) as many of you know, he changed my diagnosis back to "probable MS" pending more tests.

I think somewhere between January and now, on some level, I have convinced myself that I do NOT have MS. I have been consumed thinking about the "next step". My mind has been going along the lines of "when I get the negative results next week then I will go back to the GP ... blah blah blah".

It hit me last night that I don't actually know what he will say or what my results are. I have just been assuming. I have been fully expecting the Lumbar Puncture to be clear as well as the spine MRI. I reminded myself last night that I thought that in December too with my brain MRI and it wasn't the case.

What if I go next Thursday and he says that the other tests confirm his original diagnosis? That thought hasn't really been occurring to me, but it would seem that the reality of it has hit me.

I was laying in bed with that feeling of adrenaline rushing through my body, that panic feeling that you get when you think of something awful happening. I haven't felt like this up until now and maybe that is just the body's way of protecting itself. After all, I have had to wait for two months for these results and if I had felt this fear for all that time then surely by now I would have gone completely bonkers.

I really thought I had made my peace with this but actually I haven't at all. If he confirms it is MS then I am going to be a mess. If he tells me it is negative and I am back in limbo I am going to be a mess. Basically I am already a bloody mess. Sure on the outside I am holding it together but if you were to slice me open there are thousands of little Karens running around in circles with their hands in the air, screaming obscenities.

Bugger. Bugger. Bugger.

It isn't like it is going to change anything one way or the other. My symptoms aren't going to just disappear one way or the other are they? I don't believe in all of the drugs so I won't be taking any "treatment" other than my vitamins and trying to live somewhat healthy. So, really, does it matter? When I think about it on a conscious level I am able tell myself that it really doesn't. The LABEL doesn't matter or make a difference. On a different level I am shitting my pants. I am genuinely scared and I don't even know why?!

Oh well, one day a time I suppose, my guess is that today is going to be a long one. I wish my sister & my mum lived closer. It is at times like this that I really, REALLY feel the distance between us. It is at times like this when I wish they could just pop over for coffee and give me a hug.

So enough about me, how are YOU?

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?

And The BAB Award Goes To ...

Good Morning Bleeps.

Have you missed me? Well, I have missed you and what a week it has been (and still continues to be)!

I will probably break down my story over the next few days as I have had quite an experience and if I tried to tell the whole story in one go it would take you all day to read it and also if I sit up for too long I start to feel quite poorly. As it is I am writing this laying on the sofa with my laptop propped up on cushions.

As many of you know I went in for my Lumbar Punture on Tuesday 14th (Valentine's). I was told that Phil wasn't allowed to come in with me so he dropped me off at the door and went off shopping in Canterbury with my Mum and the girls. I was taken onto the day hospital ward and asked to change into a very sexy hospital gown, it's quite hard to pop those buttons down your back all by yourself so I only managed the top few and just wrapped the rest of the gown around me. I was a nervous wreck and asked the nurse if I could take one of my Valium pills to help me relax (I came prepared). She told me no and said I would be OK. I was a little upset that I wasn't allowed the drug but couldn't be bothered to argue.

I was in the middle cubicle and on either side of me were other women waiting to have their test done. I was to be the third (and last) person to have it done so I had quite a wait and could hear everything that was happening on the other sides of the curtain. I sat in the chair and listened while the first lady had her test done. The first thing I noticed was that she had her husband with her. I was NOT impressed. I asked my nurse why I was told that I couldn't have Phil there with me for support and yet this lady had her partner with her? She replied that while they don't like it, they can't stop a patient from bringing someone with them if they insist. Maybe that is where I go wrong, I am too polite and play by the rules. I should have just said "sod that, I want Phil there" and then I wouldn't have been alone and scared.

The first lady (with her man) was very vocal during her test. She literally screamed and complained of the pain the entire time. If I wasn't nervous when I got there, I sure as heck was after hearing her freaking out. I had my nurse with me and she shook her head and whispered "don't listen to her, you will be fine". The tone and look that she offered me suggested that the lady next to me was not a typical patient and that I shouldn't judge what it would be like based on what I was hearing.

I knew there was a lady on the other side of me waiting and being the open (nosey, obnoxious) person that I am I decided to have a chat with her. I walked around the bed so that I was on the other side of the curtain and said "knock knock, hello lady behind the curtain?" She replied with a "yes?" (probably wishing to be left alone but who wants to sit all by themselves getting nervous?). I asked her if she had ever had a lumbar puncture before and she replied that she had, about seven months ago and that it wasn't that bad. We chatted for just a short while and then it was her turn.

I sat and listened and sure enough, hardly a peep came from that lady. She was a real trooper and the lack of screams gave me a lot of comfort. She seemed to breeze through the test and so I relaxed .... a little!

Before long it was my turn. A lovely, young lady Doctor came in and introduced herself. She explained that I might feel some pushing and maybe some odd sensations but that the worst part would the anaesthetic as that would feel like a sharp scratch and then a bee sting. I was instructed to lay on my left side with my knees pulled up as close to my chest as possible.

She started to push and poke around on my back, marking out her target spot with a pen. I asked if I had a "good spine" to work with and she replied that I have the "best anotomical back" that she has had in a while. Of course, being the competitive person that I am (think Monica from Friends) I replied "Are you saying I win? I win the BAB (best anatomical back) award? Oh wow, I feel so honoured". You could say I use humour as a defence mechanism. The Doctor and the nurses all laughed and agreed that I did indeed get the BAB award although sadly no large, gold, man-shaped statue or anything was to be given as a prize.

She proceeded with the numbing process, the dreaded "worst part" that I had been warned of. Sure it was a bit of a sting but no big deal at all. This was the worst part? Easy peasy, that other woman must have been a wimp.  She checked that I was numb by poking me with a needle and I confirmed that yes, it was working and that I couldn't feel a thing. Boy, this was a breeze.  The main event started with a little pressure and some odd sensations as she had predcited but nothing I couldn't handle. I have had four kids after all, three of them naturally with no pain relief (not even gas and air!) so I have a good pain threshold. Then I heard her say "oh" and realised that it wasn't going as straight forward as she was hoping. I asked if everything was OK and she informed me that she had some blood come through and then it had all stopped. She thought that the needle had nicked the bottom of the dural sac that contains the spinal fluid and then it had clotted into the needle, nothing was coming out. The nurse went to get another needle and try again. She asked if I was OK to continue and I just told her to do whatever she needed to do to get the sample, no way did I want to have to come back.

The second needle went in and OH MY GOD I had the most intense pain shoot down my left leg and into my foot. I instantly burst into tears. Like I said, I am not a wimp when it comes to pain, I have been through childbirth and labour without even a pain killer but I have never felt anything like this. I felt like I had been zapped in an electric chair. I couldn't stop crying, literally like a baby. I started to feel a bit guilty for thinking the first lady that got tested was a drama queen. Anyone listening to me from behind the curtain would be thinking I was a pathetic baby but honestly it hurt. The nurse came to me and told me to hold her hand, which I did. I was conscious of not breaking her fingers because I was squeezing so hard. I kept apologising over and over for "being a baby" but I kept saying "I didn't expect that, it was a shock, I really didn't expect that". I must have sounded like a broken record but the nurse was lovely and kept reasurring me that I was doing great.

When it was all done I joked that I might not have prepared a speech to accept my BAB award but I did a Kate Winslet and cried instead, even in pain I found a good joke (well, at least I thought I was funny).

I was told to relax for a little while and was given a cup of coffee with a couple of biscuits. I had only been laying there for about fifteen minutes when the cleaning lady (I am assuming this is who she was as she was cleaning all the cubicles where people had left) pulled back my curtain and said "How much longer are you going to be here?" WTF?! I replied that I didn't know and go ask my nurse. Everything I had read said that it is best to lay flat as long as possible but I was getting out of bed, dressed and into the car for my half hour journey home within the hour.

I returned home to a beautiful bouquet of flowers (with chocolates) from my sister and brother-in-law, which was lovely. I received another bouquet during the afternoon from my Dad, also lovely. I was laying down as instructed all afternoon (drinking lots of coffee as caffeine is said to help) but by early evening I was in a lot of pain. I was warned that I might get a headache that was "like a hangover" and let's face it, I am no stranger to those but this pain wasn't in my head. Sure, I had a muzzy head but the pain in my back was unbearable. I knew I needed to lay down but laying down was killing my back. Sitting up was hurting my head. I ended up in tears saying that I just didn't know what to do with myself.

Before my test I had asked the Doctor if I was going to be OK to go out for my Valentines dinner (Phil had booked one of my favourite restaurants) but by about four o'clock it was obvious that I wasn't going anywhere, I was in too much pain and we had to cancel. I was so sad. I dosed myself up with pain killers and laid on the couch, not exactly a romantic Valentine's day but not something that I could help.

I hoped that when I woke up the next day I would be OK but the "fun" was just about to start. It is fair to say I have been in agony ever since. I need to rest now but will continue when I feel better, please let it be SOON!

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

A Rude Awakening

Good Morning Bleeps.

I hope you all are having a lovely Sunday (or indeed whatever day it is that you are reading this). I woke up this morning from a nightmare. Was I being chased by a mass murderer of falling off a cliff? Nope, I was being told that I was no longer allowed to see my Neurologist because I had missed an appointment. Doesn't sound like much of a nightmare but it was really stressful as I was crying and begging, trying to explain that I need help (and treatment) and they can't just send me away.

I know where this is stemming from. When I saw my Neuro on Jan 12th he told me that although the MRI showed lesions on my brain, he wanted to send me for a lumbar puncture as well as another MRI on my spine and an EVP test. He called the LP unit as I sat in front of him and was advised that there were only fifteen people on the waiting list so I should be seen in two to three weeks.

I have to admit that I am really nervous about this test. I know people have told me that it really isn't bad and that it isn't the scary experience that many would have you believe but I am the woman who had three of my four babies with no drugs. No epidural for me and not because I am some sort of wonder woman (although I bet I would look great in the costume) but because I am scared stiff of the idea of a needle anywhere near my spine. Yikes!

I did have my fourth little Angel (don't care that she is twelve now, she is still my little 5lb newborn in my eyes) by caesarean so I had to have the spinal block then but all cared about was the health of my baby, my own fear didn't come into it.

Anyway, I have had letters for all of my tests (MRI, EVP, Cardio Stress Test, Heart Monitor) and yet the one that I expected first hasn't arrived. In my dream the hospital called me to say that because I had pulled a "no show" for the lumbar puncture test that they had removed me from the Neuro's list. I was trying to explain to them that I never got the appointment. I was crying and pleading but the receptionist was a complete cow-bag and refused to believe me.

I woke up with the feeling of frustration and despair. It would seem that my MS is following me into my dreams. I think that as much as I am not in a hurry to have this done, I will phone my Neuro's secretary tomorrow and just make sure there hasn't been a blip in the system.

Today my face is driving me crazy with the numbness and my left arm feels heavy and weird, like it isn't part of my body. I am putting on a brave face and am about to make bacon sandwiches for breakfast. The family don't need to hear "yet again" how I am feeling. I am sure they must be getting as fed up of hearing it as I am of saying it.

So enough about me, how are YOU?