Friday 13 April 2007We returned from our cruise around the South Pacific on Wednesday. We were all glad to be home as it was not the best holiday we've ever had. Mobility was OK as I took the little scooter and I could get to most areas of the ship but there were so many people using the lifts in preference to the stairs that I often had to wait around for an empty lift or for considerate people.The motion of the ship combined with my already bad balance made showering and standing up a challenge! I got off the ship in Noumea and Port Vila but it certainly wasn't easy getting around on the scooter (we had of course expected this). The pavements were quite rough, there were few ramps into shops and many of the gutters didn't have dips. I didn't even attempt to get off in Ouvea and Pentecost Island as transfers were by tender boat and it was just too daunting.Towards the end of the cruise, I came down with a heavy head cold and Kai got a rash all over his body which we suspect is German Measles. Tig did an introductory scuba dive (which he loved) and he and Vic and Kai saw the land divers on Pentecost Island and had a great swim in the crystal clear waters of Ouvea. The food and service on the ship was great, though feeding Kai was a bit of a challenge as he wasn't keen on most of the food and then he stopped eating as he started to feel ill. He went to the kids' club a bit, but didn't like staying there in the evening while we had our dinner at 8.15pm, so we had a few nights with him falling asleep on our laps at the dinner table.All in all, it was nice to spend time with Annie and Vic and great not having to think about meals, but I don't think we will be cruising again in a hurry! I have become considerably stiffer in my legs and slower to get around. Perhaps due to a combination of the head cold and being restricted to the scooter for 10 days. My back is affected because my stiff legs and dragging feet have made my gait worse, even using the wheelie walker (I am quite perturbed that the left leg and foot are not as strong as usual). My right hand became very weak while we were away too which made it difficult to use my cutlery adeptly. It's a little better now but the fingers on my left hand are a bit sore.I think the small amount of moving around that I can do with the wheelie walker in the house really helps keep my muscles a bit freer. I have also been without the spa and all the other comforts of home while we were away. Hopefully now that we are home things will improve a bit. Unfortunately we are in the middle of school holidays which means there is no preschool for the rest of this week and the next so daytime sleeps will be few and far between. Just gotta push through!Saturday 21 April 2007Finished flagyl pulse number 8. Still feeling out of sorts due to the cold, which is hanging around, even now after almost two weeks. Sick of tablets, sick of my symptoms getting worse and sick of the relentlessness of ms and its effects on my entire life and the lives of those I love.Wednesday 25 April 2007Public holiday for Anzac day today so no preschool. Kai up just after 5am. Tig is going to take him to Harry's at 1.30pm so I can have a sleep. My cold is almost gone, but Kai is still coughing and sneezing quite a bit. All my symptoms are much the same, very heavy legs, burning/stinging nettle sensation in both feet and lower legs. I am slow, slow, slow to move around, resting very heavily on the wheelie walker which is putting a lot of tension into my arms and shoulders. I've been having a spa almost every day and trying to stretch my legs, but they are still sore and much tighter than when we left for the cruise. I did feel better yesterday after a daytime sleep. Hoping for the same today.Wednesday 9 May 2007I don't seem to be recovering the function that I lost since the cruise/flu in that my walking is terribly slow and laboured. I have been sleeping/resting a lot but I am not getting the same benefit I used to. For example, prior to the cruise, I found that my walking was slightly better after a sleep, but now it just seems to stay the same, though it does deteriorate the more I walk. I have been driving Kai to and from preschool and just the short flight of stairs from the carpark and the short walk in to the preschool (probably somewhere between 20 and 50 metres all up) is enough to really take it out of me. I am finding it increasingly difficult to manage just with the walking stick on these short ventures out and think I may have to start taking the wheelie walker with me. I am still investigating ramps for the scooter as I am pretty useless once I've driven somewhere. My hands have been a little sore on waking lately too. I've been grumpy and short-tempered and have been losing faith/patience with Copaxone, antibiotics, supplements -- everything. Mim is investigating magnet therapy for herself at the moment and suggested it might help me. Lovely thought, but hard not to scoff at yet another 'miraculous cure' for every complaint going. Tig and I have been watching 'Grumpy Old Women' -- never mind old, I could whinge along with the best of them right now! I know I am being a pain in the butt to live with, but I am just so angry and impatient with everything at the moment. I am trying to keep my foul temper and crappy attitude at bay for Kai and Tig's sake, it's just all so disheartening sometimes. I am constantly reminded of all the things I used to be able to do, and I was making progress in training myself to not want to do those types of things anymore, but I'm struggling with it at the moment for some reason. I thought about not posting my negative thoughts about life, the universe and the protocol, but that would kind of defeat the purpose of the blog I think. Just in case anyone reads this, please don't think I am giving up at this stage. I am committed to the protocol for one year and then I will try intermittent therapy for a time (haven't decided how long yet) regardless of my progress at that time.Saturday 12 May 2007I can't stand myself being so negative and leaving the blog at the previous entry, so here are some positive things to focus on.I can spend the day in our lovely home with my darling son and wonderful, amazing husband.Wayne is coming today to plant 30 gardenias as a hedge in the front garden.It's going to be a beautiful, autumn day filled with sunshine and as it won't be too hot, I can probably get out on the scooter in the garden for a while.That will do for now as Kai wants his breakfast. Friday 17 May 2007Flagyl Pulse 9Today is day five of flagyl pulse 9. My hands are quite sore, particularly the index finger on my right hand and it is also a bit swollen. I can still type, but it's a little stiff, painful and weak. I notice it most when I try to use an aerosol spray (for example the spray olive oil or my perfume bottle). Usually I'd just press it with my index finger no problem but at the moment it doesn't have the strength and it is too sore.Generally I have been experiencing more pain in my body than I am used to. For the last few weeks, I can't get very comfortable in bed and I end up waking every couple of hours to change position (added to the trips to the toilet and visits from Kai, sleep has been quite interrupted during the night; thank goodness for preschool so I can catch up on some sleep during the days!). My right knee is particularly bothersome. Come to think of it, both my legs have been very tight and sore. Last Friday, my remedial massage therapist spent the whole hour just on my legs and didn't get to my back at all. I am still very slow getting around, though Tig reminded me that I did have some improvement one day earlier in the week.I think I have got my anger and despondent feelings a little more under control now, which is good for all three of us!Socially I am very much looking forward to this weekend as four girlfriends from school are coming to stay! Tig and Kai are staying over at Michelle and Graydon's (Michelle is going to join us girls for dinner though).Tuesday 22 May 2007I had a great time with the girls on the weekend. I felt a bit bad that Tig and Kai were being ejected based purely on the presence of dangly bits, especially considering that the girls were actually Tig's friends at school and not mine! I also prefer to share everything with my best friend, and as he's a guy I've never really been a big fan of 'girls only' things. The good news is that Inge is moving to Callala in July, so we will get to see a lot more of her. We are working on Lindy next. I think Ruth and Michelle are pretty settled where they are, but you never know. We'll populate Callala with all our friends and family yet!I am still very slow getting around, though my hands are not sore like they were during the pulse last week. I went to the chiropractor yesterday and he did a few manipulations but couldn't get the really satisfying crunch I was hoping for in the lower back (due to my pain threshold, not his technique!). He feels that a lot of the pain and tightness in my back is a result of very tight hamstrings and I agree. I have to concentrate on doing more stretching and he also said it would be good to just lie on my back a bit with my whole body straight (unfortunately I like to sleep scrunched up on my left side and have never really liked lying flat).Emotionally I'm feeling pretty good. We are doing a bit of remodelling in the house which is resulting in lots of throwing out which I love. I wish I could do more in each session, but I just have to be patient and do little bits at a time. Wednesday 6 June 2007Symptom update: things generally are still slow and heavy with my left leg gradually getting weaker. I did yoga a few days ago and really noticed the difference in the strength in the left leg from a few months ago. I've had a good few days rest while Annie and Vic were here, even a few sleep-ins, but back to the 5am starts this morning so the daytime sleeps while Kai is at preschool are needed more than ever. More loss of sensation in both legs; actually from the waist down really. Fingers and hands pretty good though. Off to the neurologist on Friday and will ask to try out LDN.Tuesday 12 June 2007Saw neurologist on Friday. He was not prepared to prescribe LDN due to lack of clinical, scientific trials. As I have obviously deteriorated since he saw me in December, he suggested a course of prednisone (I chose oral over IV to avoid the trips to hospital and because I think it has worked better for me in the past). I started with 80mg on Saturday and Sunday, 60mg on Monday and today, and will continue to taper as per his instructions. I have had some minor symptomatic improvements (walking slightly better, skin not quite so sensitive, fatigue not so overwhelming) and that is remarkable considering that I am really suffering from the side-effect of sleeplessness. For the last three nights I've only got about three hours sleep. I didn't have a daytime sleep on Sunday and yesterday only dozed on and off and yet I'm not feeling too bad generally. As much as I dislike taking the steroids, it's hard not to appreciate the immediate and obvious results that you I just don't get with the long-term medications.In terms of future treatment, the neuro still thinks Tysabri is the way to go when/if it is approved by the PBS review board. He has a female colleague in the trial doing very well on it. It's not going to happen in a hurry, so I've still got plenty of time to think about it I am sure. He also said that they are doing trials on two other drugs (can't remember the names at the moment), one of which is already widely used in other areas and so could be available much sooner. He said he'll call me if there is any movement on that front before my next appointment with him in December.Started Flagyl pulse number 10 yesterday. Hopefully that will result in some improvements too. Every little bit helps!Sunday 17 June 2007On Thursday my previous neuro called to tell me about a trail that is being run here for 20 ms patients to try Tysabri on "compassionate grounds" (whatever that means). He is a very caring, thoughtful man! He suggested I contact my current neuro to see whether or not I am eligible for the trial, which I did, but have not heard back from him yet.Thanks to this prednisone "fix" and the resulting minor improvements, I am re-gaining a little faith in conventional approaches and am doing a turn-around in my thinking about Tysabri. I am not getting any miraculous results from the CAP so feel that I need to pursue all avenues open to me. I will plod on with the diet, supplements, Copaxone, steroids, CAP and whatever else comes along that offers some hope. What other choice is there?I am still suffering a bit from the sleeplessness that started with the prednisone but I am down to 20mg in the tapering cycle so just another five days or so until I finish this course. While my sleep is affected, I am still seeing some minor improvements which is heartening. I've had improvements in both my legs, most noticeable in the right one on my LIK scale! I don't have to use my arms to lift the right leg into my knickers as I have had to do for a few months now. I can't really lift it much higher than my knee, but it's enough. The foot-drop in both feet seems to have improved a bit too as I am not leaning so heavily on the wheelie walker and I've been able to attempt a bit of furniture surfing and even a few little unsupported steps (slow of course). I've also noticed that I am not getting up to the toilet as often during the night (still using the catheter all the time though; no change there unfortunately).My hands have been pain-free while on the steroids, just a little hyper-sensitivity in the fingertips as I type today. I've been pretty strict with the sleeping during the day, even if I don't feel as though I am going to fall asleep, I hop into bed anyway and of course eventually drift off. I've curtailed most activities (haven't even attempted to drive Kai to preschool for weeks so Tig has been doing all the running around) and haven't been up to the shops on the scooter. We have had torrential rain for over a week and more predicted so that doesn't help either!For some reason I feel as though I should be noting down more symptoms and keeping a closer track on changes and improvements, so will attempt to be more diligent in that respect. It's just a bit boring!!Monday 18 June 2007I'm going to try a week of describing my symptoms in the mornings to compare with another week in the future. Both hands and legs (knees down) very tingly with pins and needles on waking today. Muscles generally feeling much stiffer than they have been, but loosened up a bit once out of bed (must admit to too much red wine last night!). Balance noticeably better when bending down to get the clothes out of the washing machine and put them up into the dryer. Not leaning on the wheelie walker as badly; foot-drop not quite as bad.Just read Marie Rhodes' page on the limitations of the CAP. Very timely for me as I have been getting a little impatient with all treatments lately. It's been niggling at me for some time that perhaps my 'version' of ms will not respond to the antibiotics as others have. Whether it does or not, it's just good to hear the limitations aired in a way that is not emotionally negative or critical (a tone I worried about conveying if I expressed my own doubts).Tuesday 19 June 2007My bladder was terrible yesterday. Increased urgency and frequency all day. Most times I passed a little urine without the catheter (be careful what you wish for I think!! I was hoping this would improve, but in the case, I don't think it's a positive thing!). Constipation and then bowel urgency worse than usual. Suspect a urinary tract infection, though it doesn't 'feel' like ones in the past (although as my sensory perceptions for everything below the waist are pretty messed up, I probably shouldn't pay too much attention to the 'feeling'). Perhaps it is all related to the prednisone.Sunburnt/stinging nettle feeling still persistent in shins and feet, especially noticeable on waking (perhaps not necessarily worse in the morning, just 'sounds' louder and I'm more attuned to it in the quietest part of the day).Did washing/folding/putting away clothes. Slept on and off from about 12pm until 3.30pm (Michelle picked Kai up from preschool for us). I was surprised that I was ready to go back to sleep by 10.30pm. Slept well until about 4am. Bladder slightly better than yesterday. Not sure it is a UTI after all. Wednesday 20 June 2007Kai slept in until 6.30am (woo hoo!!). Sunburnt feeling in legs and feet slightly better on waking. Did all the morning stuff: got Tig's coffee, Kai's breakfast, my breakfast, had a shower, got Kai ready for preschool and actually drove him there myself. The walk in and out was still very slow, not much better than before the prednisone I think.Got home and cooked! Minestrone on the stove, banana bread out cooling. Takes me hours to prepare, cook and then clean up!! My legs and body are pretty tired now (12pm) so will head off for a rest (not feeling sleepy yet, but eye mask and ear plugs will help I'm sure).Bladder seems more stable today.Thursday 28 June 2007Can't believe more than a week has slipped by. I took a urine sample to the GP last Friday -- no sign of UTI with the dip stick so she sent it away to the lab for more thorough analysis (no call from her, which means no problem). I've upped the ditropan to 5mg in the morning and 5mg in the afternoon and this seems to be keeping the bladder better under control. The side effect of a dry mouth has actually been helpful as it is forcing me to drink more water! I've made an appointment in October (first available!) to see the specialist ms urologist I was seeing a couple of years ago (I only stopped because we moved such a long way from the ms centre but I would rather make the effort and travel to see him in preference to the urologist I've been seeing locally).Mum and Gaz stayed last weekend. It was lovely to see them but Kai has passed on his cold to Mum, so her ms symptoms will no doubt be worse as she was already feeling a bit low generally.On Tuesday morning, Tig was sleeping in the spare room due to his bad back (we are in the process of shopping for a new bed) and he was woken by water dripping down the blinds!! A builder has found the leak and the carpet is now being dried by huge machines, so hopefully can be saved rather than replaced. This rain is driving me crazy!!Symptom-wise, not much to report. All much the same I think. Have been sleeping a bit better now that I've finished the prednisone. Tig did comment that I seemed to be walking a little faster when I was using his arm for support to get to the car today.Tomorrow is the last day of preschool before two weeks of holidays, so I am gearing up for that! Annie and Vic are coming to stay to help out for the second week, so it's just one week to get through with few or no daytime sleeps. Depending on his work, Tig and I will probably do some 'tag team' napping so I can stay out of the zombie zone.