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Philippa
Member in Phase 3
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Posted: Sun Sep 16th, 2007 01:59 |
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I am on Modified Phase Two.
I’ve been on the MP for almost 8 months now so I’m going to write about my progress this post. Honestly, the last 8 months have been really awful. Most of the time I’ve felt a lot worse than I did at any stage of my illness pre MP. I also haven’t made nearly as fast progress as I had hoped. When I started I naively thought that at 6 months I might be listening to CDs and be airline mask free.
Even so I have made some progress and I think the MP is working slowly. The slight progress in my ears and eyes has made life easier. If I continue to improve and regain my health the painful process will be worth it in the long run. I am grateful to be on the MP. Below is a summary of my progress at this point.
Before I started the MP even quiet conversation hurt my ears and I was spending most of my time in a silent room with ear plugs in. Now I can be in the living areas of the house while people are around and I don’t mind if the dishwasher’s on in the next room if the door’s shut. My Mum’s been reading aloud to me and on a good day we can manage a 15 minute chunk. I still can’t listen to CDs or the radio or cope with background noise and I can’t deal with more than one conversation going on at once. I’m still wearing ear plugs during the day but not at night.
Pre MP I was in pain from my eyes more than half the time. If I looked at something for more than one or two minutes the pain got very bad and took days to get better. I wore an airline mask all the time and often felt my way around the house. Now most of the time even though my eyes don’t feel quite right I’m not in pain. I still wear an airline mask most of the time but it’s not painful to look when I’m eating a meal or to look for five minutes in a craft project I’m doing by touch. I read the comics in the paper and the headlines and a few sentences from a couple of articles. Sometimes I can push it to reading a short article. When I do look for these periods I still only look for the essential bits and then shut my eyes.
My physical fatigue is still a lot worse than pre MP. Pre MP I could jog for thirty minutes. Now on a good day I can manage a short walk. I guess this is because I’ve been herxing so much. The things I’m doing in my life are different to pre MP so that makes it difficult to assess mental clarity. I’m also having lots of mental fog herxes. In between herxes I’m sometimes mentally clear. Pre MP I was quite mentally clear until I did a bit and got tired. After that was I was mentally fatigued till the next day and resting didn’t help. Now I find that resting does help my mental clarity. After spending an hour and a half in bed in the middle of the day there’s some improvement.
I’ve been having lots of stomach and abdomen herxes, bloating, nausea, slow digestion and some pains. I can’t tell if I’m making progress or not.
Things aren’t as bad now as earlier in the MP when I was spending almost all my time in bed. Now I spend about 9 1/2 hours at night and 3 to 5 hours in the day in bed. I often spend one to three hours doing craft by touch making different shaped boxes. I spend the rest of the time sitting around, drinking herbal tea and talking to my family. My mum’s been reading me books in short installments and most days my dad tells me what the newspaper says to keep me in touch with the world. I find that I can cope with having conversations about the news a lot better than I can being read articles. My friends and aunts visit fairly often. I’ve just started trying to do some short walks but am often finding this too hard. I don’t leave the house except for doctor’s appointments and these short walks. I’m still avoiding sunlight and D completely. I’m hoping to have my first craft stall as Rhyme Time Boxes in about 3 weeks. I’m not well enough to go and run it so my parents will do that for me.
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CFS/severe visual aural sensitivity Dec06 D7 125D83 Ph1Jan07 Ph2Feb08 Ph3Jul08 probiotic calcium melatonin lugol's soln NoIRs limited outings covered Sep08 D<6
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Philippa
Member in Phase 3
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Posted: Sun Apr 20th, 2008 07:37 |
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I’ve had a couple of OK mornings and done a bit of craft.
I had two days of eye IP. Even though it’s frustrating I’m pleased when I get eye IP because I hope it means my eyes will improve. Having to minimize my eye use during IP made me think about the improvement they’ve made.
In January last year I was hardly using my eyes at all. I was often moving around the house by touch and we ate our meals in the dark (not photosensitivity). My mum put out my pills and set my alarm clock for me. Now I still don't use my eyes for long periods of time and wear an airline mask for most of the time but I use my eyes for lots of 5 minute snatches throughout the day.
There used to be a threshold with my eyes. After I'd used them for 30 seconds to a couple of minutes I'd hit it. My eyes would get bad disproportionate pain and pressure and would take days or a week to recover. I remember lots of times when I accidentally hit the point by doing something stupid like looking while I picked a couple of clothes off my floor or reading one text message.
Now there isn't a threshold like that any more. They gradually get sore and recover a lot faster. This has made things a lot easier. A couple of weeks ago I used my eyes for 40 minutes in a row looking around. They were a bit sore for the next couple of days but not terribly so.
May 2008:
I can lie on my back. I haven’t been able to for the last year and a half because when I did I got pressure and pain in my nose going back into my head. I’m trying to remember what to do with my feet when lying on my back in bed. 
About 2 weeks ago I went to the dentist and got 2 fillings done. My ears were a bit sore afterwards but not badly so and, significantly, my brain didn’t feel fried. My mum and I were both pleased and surprised at how well my ears had gone. Last year I wouldn’t even go to the dentist for a check-up.
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CFS/severe visual aural sensitivity Dec06 D7 125D83 Ph1Jan07 Ph2Feb08 Ph3Jul08 probiotic calcium melatonin lugol's soln NoIRs limited outings covered Sep08 D<6
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Philippa
Member in Phase 3
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Posted: Mon Jul 21st, 2008 10:14 |
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Eighteen months on the MP
Some MP milestones have come within a few days of each other. I’m starting phase 3 today and in three days I will have been on the MP for 18 months. I have now completed phase 1, mod phase 2 (with 2 and 3 antibiotics) and phase 2. I decided it was time to write another report.
The last 10 months
For the four months after my 8 month report I continued to be about the same or a bit better. I started doing five minutes of gentle exercises every day and walking on a treadmill for five minutes every few days. The amount of time I could tolerate being read to also increased to about 25 minutes.
Then early this year I started phase 2 and my IP got a lot worse. I’ve felt dramatically worse for the last 6 months than I did at the end of last year. I’ve had very bad fatigue (IP). I spend nine hours in bed at night and 5 to 8 hours in bed during the day. The rest of the time I sit on the couch. I’ve stopped doing the gentle exercise and hardly ever do any craft. I’ve also had very bad mental fatigue and fog (IP). Even though I spend hours and hours lying around in the dark silence I hardly think and I haven’t been bored. Not being bored is a blessing given the severity of my eye and ear symptoms but that level of mental fatigue isn’t nice. I find it hard to cope with anything and don’t feel like me.
In phase 2 my eyes and ears have been better in some ways and worse in others than they were at the end of last year. I’m still not in pain most of the time and when I am it is nowhere near as bad as it was pre MP. The post I wrote about my eye threshold earlier in this stream has remained applicable.
There are two aspects of my eye and ear sensitivities – sensitivity to use and sensitivity to focusing. In my ears sensitivity to use is the quantity and volume of noise I can tolerate. I’m sensitive to things like electrical appliances, clattering in the kitchen and weather. In my eyes it’s how much I can look around at the world. In both my ears and my eyes sensitivity to use has improved a bit this year. I’m still wearing ear plugs all the time but we have the ducted gas heating on this winter which we couldn’t do last winter. Earlier this year I also went to the dentist and had two fillings done. My ears got a bit sore but not too badly and they recovered in a day or two. I don’t have such good examples with my eyes. Mum and I just have the feeling that I’m looking for more five minute snatches and peeping out from under my airline mask more (which I still wear almost all the time).
In my ears sensitivity to focusing is how much information I can listen to. I’m sensitive to things like being read to, dense conversation, music and the radio. In my eyes I’m sensitive to things like reading, looking at a craft project I’m doing, TV and computer. In the last 6 months my sensitivity to focusing in both my ears and eyes has been worse. I think that this is because of the level of mental fatigue and fog IP I’ve had. I’ve only been able to be read to for a few minutes and have sometimes been asking people to talk slower. Music and radio are still out of the question. My eyes haven’t been as badly affected. I’ve still been reading the headlines and a couple of sentences in the newspaper but I haven’t been able to read short articles which I could do when I wrote my 8 month report. TV and computer are still out of the question.
I‘ve noticed 2 other improvements worth mentioning. Since May I’ve been able to lie on my back. I hadn’t been able to do this for a year and a half without getting pain and pressure in my nose and head. This improvement is really good, particularly given the amount of time I’m spending in bed. The other improvement is my skin. I’ve always had dry skin. This never bothered me. I just thought it was normal. Now my skin is soft, smooth and shiny.
Yesterday mum and I talked about the level of IP I’ve had in phase 2. I don’t think I could have significantly decreased it but that doesn’t really matter. Mum and I agree that since my CFS symptoms are so incredibly limiting now’s a good time to get through a lot of IP.
Immunopathology
I’ve been having strong IP all the time I’ve been on the MP starting a week after my first dose of Benicar. Fatigue is one of my main IP responses. I have had it constantly for the last 18 months. This was one of the biggest shocks about the MP. Before I started I thought that IP was meant to come and then go. With fatigue this hasn’t been the case. The levels of fatigue have varied. At its worst (the start of mod phase 2) I could only get out of bed for meals and to have a bath and go to the toilet. At its least bad (the end of mod phase 2) I could do one to three hours craft by touch and 10 minutes gentle exercise a day.
I have had lots of other sorts of IP, some of them very strong. These other symptoms have come and gone more like I expected. My most frequent IP responses are:
Stomach symptoms – bloated abdomen, tight feeling stomach, tight solid feeling digestive system, very slow moving digestion
Neuro and emotional symptoms – anxiety, sadness, miserableness, a crazy feeling mind, a buzzing mind
Sleep disturbances
Sleeping in mornings
Feeling hot or cold
Swollen feet
Sores in ears
Squished, uncomfortable feeling body
Since I’ve had very strong IP all the time since I’ve been on the MP it’s very hard to assess progress. Really I have no idea how healthy I am under all the IP. I find that I need to use antibiotic increases to moderate my IP so I’m reluctant to try and take an antibiotic break.
Time Line
The other big shock I’ve had about the MP is how long it’s taking. Before I started my mum and I read the time line which said 6 months feeling better, the worst of herxes over by one year and remission at 18 months. I’ve been very disappointed at the state I’ve been in all year and the fact that I’ve hit 18 months and am still wearing ear plugs and an airline mask and have a lot of the MP still in front of me. I’ve had to change my hopes and expectations. Mum read me some of an article which said that very sick patients might take 3 to 5 years to hit remission. Unfortunately I think I fall into that category. Given how things are going at the moment I’d be so delighted if I hit remission at 3 years.
The last 18 months on the MP have been really dreadful but my disease is dreadful too. At least on the MP I have the hope of recovery. I have a great family supporting me and I can accept that this is what my life’s like for the time being. Most of the time I’m reasonably cheerful and I’m going to keep on hoping for a better future.
Sept 2008:
My eyes and ears have been a bit better lately. For the last month or so I’ve been able to read a quarter of a tabloid newspaper page on some days which is quite exciting. I am trying to think about the positive things rather than dwelling on time frames or how lousy I always feel.
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CFS/severe visual aural sensitivity Dec06 D7 125D83 Ph1Jan07 Ph2Feb08 Ph3Jul08 probiotic calcium melatonin lugol's soln NoIRs limited outings covered Sep08 D<6
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