Ok, where was I? Oh yes, October, I started to get sick. My best friend and I planned a trip to Melbourne. We both had 8 and 9mth old babies, so we really needed some "me" time. I definitely needed some "me" time. The only problem with it all was that I hadn't told my bestie about my diagnosis. I know that sounds stupid, because she should have been one of the first people I told, but I just wasn't ready to have my disease completely change my life. I was also in the "denial" phase of grief, so I just wanted to go along as normal and pretend that my MS just didn't exist. I had cried enough to fill numerous amounts of buckets, and I just wanted a break. So, we went shopping, and I lived for 3 days on not enough money, too much alcohol, and not enough sleep. And I coped really well, I walked in high heels without stumbling, I didn't feel too tired, all until we were sitting at a restaurant having lunch, outside, on a hot and humid day in Melbourne. The pain started. It's really hard to describe, but it's like what you imagine putting your hand in a power point would feel like. Electric shocks. Travelled up my left arm from my fingers, all the way up the left side of my face. And it came in waves, so it was a shock that would settle for 10 seconds, then another one, and another, and another. I remember putting my head down on the table, closing my eyes, pretending that I was really tired. Then I got up and managed to get to the toilet. I sat on the loo crying and clutching my face. The worst thing about it all, despite the pain, was that I couldn't talk to my best friend about it. I couldn't cry on her shoulder or hold her hand until it ended, I had to go on pretending that I was fine. It did end. It settled and I did the most brilliant acting job, pretending I was fine for the rest of the trip home (well at least I think I did). I did fall apart a little when I got home. I ended up sleeping in the spare room because even though I was so tired, I was so anxious about the pain and what was happening, that I couldn't sleep. But I did sleep, with the help of some prescription anti-anxiety tablets (which I still do take at times).
So at this time, I was waiting to see a new neurologist. I had decided that maybe a female Dr would be a little more compassionate. I'm not sure how long it was until I saw her, but not long. I kept it all together really well, until I sat down opposite her in her office. And god knows what it would have looked like to her, but I lost it, completely lost it. I was crying, and shaking and trying to explain things whilst crying like a possessed child. Now I can tell you all, that being female, does not make you more compassionate. She sat there, whilst I blubbered like an idiot, and then (I think), she sort of explained why I was getting the pain (it's neuropathic, caused by the damage to my nerves), and then wrote me a prescription for nerve pain tablets (Lyrica), sleeping tablets (Temazepam), anxiety tablets (Alprazolam), and more anti-depressants (Zoloft). And that was it. So I left, feeling a bit better because I thought pharmacology would be able to make everything better. Unfortunately, the nerve pain still happened at different times despite the Lyrica, and despite increasing doses of it, the Alprazolam helped with the anxiety caused by the pain, and Temazepam didn't really help with the sleeping. So gradually things got worse.
In March, I got gastro (yuk), it was a Friday night, and I had been up most of the night vomiting. I was supposed to go out with my girlfriend on the Saturday night, and I really wanted to go. I guess I was still in that phase where I was refusing to let the disease dictate my life. Hubby said I shouldn't go, and I knew that I was too sick, but I was determined. Determined I would call it, stubborn as hell is what my husband would call it! So I got up on the Saturday morning, and went to the local indoor pool with my eldest children for their swimming lesson. The pool was hot, humid and foul. I was sitting there, on the bench, and I knew I didn't feel well. Then the pain started. I managed to stagger to the open sliding door. It had a ledge going out, and I completely fell over it, and landed on the grass outside. It was agony. The pain is excruciating. It's very difficult to explain, but I have had 3 children, with only gas, and I can tell you, I would rather experience labour pain. People at the pool were great though. I had so many people around me wanting to help, even though I could only lay there, in the foetal position and groan. I remember one of the swimming instructors talking to me, and I remember her telling me that her sister had MS and wasn't feeling too great at the time. It was comforting to know, in that situation, that somebody at least had a bit of an idea what was going on. Anyway, they called an ambulance, and I was taken to the hospital. By the time I got there the pain had stopped, they rehydrated me and I went home.
Things got worse from then on. The pain came more and more frequently, until sometime in May, I couldn't even get out of bed. Everytime I got up to go to the toilet the pain came. I look back on it now and I should have gone to the hospital then, but I know that there isn't a lot that anybody can do for MS, so I didn't really think there was much choice other than to lay there and take it. I did call my neurologist though. I wanted to let her know what was going on and what I should do. So I called her, told her what was happening and she told me that it didn't sound like an MS problem, and that I should go to the GP and have my blood pressure checked. Now this is a specialist, that studied for years and probably drives a brand new shiny BMW!! I think that she probably got her qualification from a weetbix packet. I knew it was MS, I wasn't stupid, I was the one experiencing it. So I layed there, bed-ridden for about a week, and then the pain came whether I was upright or not. Eventually, after pain coming all night, with a 10minute break between episodes, hubby said that he would have to take me to the hospital. I didn't argue, I just wanted somebody to do something about the pain. So at the hospital I had a big shot of morphine, which did nothing for the pain, and went for an MRI. The scan clearly showed that I was having an "acute relapse". My lovely neurologist (said in a very sarcastic tone) looked at the scans, confirmed it and promptly put me under the care of another doctor as she was going away for a conference. In hindsight, best thing that she ever did for me. Because the Dr (a physician), was lovely, compassionate, helpful, sympathetic, all the nice words that you can think of. So I was put on subcutaneous morphine, my lyrica dose was upped again, and I had 3 days worth of methylprednisolone. 3 weeks I was there for. The morphine, unfortunately did nothing except make me incredibly constipated. Neuropathic pain is traditionally very difficult to treat (yay!), not responding to opioids in a lot of cases. So I basically waited until the episode got better on it's own. My physician, who I cannot praise enough, got me in contact with the Pain Clinic, from the biggest hospital in this state, and the consultant anaesthesiologist from the clinic came to see me. After 2 weeks in the hospital I went home. I was painfree for a couple of days, then it returned and within the week I was back in hospital again. In the time between my last outside appointment with the terrible, female neurologist, I had made an appointment with my current neurologist. I had made them aware that I was in hospital and couldn't make the inital appointment, so he came to the hospital to see me instead. In the 3rd week that I was in the hospital, my neurologist and I decided that Rebif was not working, was not doing it's job. For me to have such a bad relapse, whilst on the medication, indicated that it was not effective. We talked about Tysabri and he wanted to know how I felt about going on it. Hubby and I had talked about it beforehand, and come to the conclusion that there was no choice. We had to give it a try. (I'll put some more information about the available MS drugs in a different post). So at the end of the 3rd week in hospital, I started on Tegretol (Carbemazepine), which is an anti-epileptic drug, but can work for neuropathic pain, I went home, thankfully I didn't return, and I was pain free.
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