Into week 3 ...

Here we are then, week 3 started last Friday. Shot night wasn't too bad, pretty much like before. The sides didn't kick in properly until about Saturday afternoon. Although about an hour after the shot, I did feel as if somebody had pummelled my neck area with a 20 foot barge pole. Friday morning started with a niggling headache, which increased in size by Saturday morning and carried on ballooning throughout the day. Saturday night I could even feel it in my sleep. No amount of pillows added or removed made any difference. In the end I just gave up and accepted it. Maybe that was the trick - by Sunday night it had gone. Yayy bloody yayy!

Today I am actually not feeling too bad mentally and physically. Somehow got a lot more energy and I am walking around saying to myself: ' I am big! I am strong! I can do this!' And I will! I wonder if this is closely related to actually having some sunshine and a few warm rays on my face. The differences with Jessi are being smoothed out slowly too. At least we are emailing again, although I think either of us feels still too fragile to talk on the phone. It will come, just needs some time.

I was so happy last night. The Imam send me one of his adoring emails. I just know he can't keep away from me and fancies me rotten. Poor lost, distorted soul! I just wonder how long it will take him to realise, that he would have to be a much bigger man for me to show any interest at all? So now I am waiting for the next instalment. Will it be flowers? A card? Or an even grander gesture? We will see. No doubt I shall update you all in due course. *mwaaaahaaaahaaaa*

A little fairy tale ...

It was towards the 2^nd week of March in the year 2008, when a little woman approached the big city, where she was hoping to find the Imam to who she wanted to take her gifts and get some advice in return. She had been travelling East for over 2 years, always following the bright star she new was shining over the city of the Imam. Now finally she was standing in front of the impressive city gates. Unfortunately, she found the gates closed and although there was a big heavy knocker, which she operated a few times, it didn’t seem as if anybody was alerted by the noise. She sat down for a while in the dust by the gates, dust through which many men and women in similar situation had trodden before her. As she sat cross-legged against the wall, her cloak opened and revealed a round glass bowl with a fish in it. All through her travels she had been carrying this fish, because it was the reason for her visit to the Imam. The fish was of a yellow-greyish colour and did not look very well. The little woman started whispering to the fish: “Here we are my little Hepsy! This is where they told us we could get help, where they would help us and support us until you are well again. But now we are here, nobody is opening the gates for us.” Little sobs came from her throat and sparkly tears started falling from her eyes. The little fish swam to the surface and his mouth opened and closed. They both remained like this for a while and the sobs got louder. Eventually a little window opened above the woman, and a mans’ head looked out. “Hey little woman. Why are you sobbing?” “I can’t get into the city and I’ve come all this way. If I cant get in, my fish might die before I have seen the Imam and then the whole journey will have been for nothing.” she cried. “Don’t you worry, little woman,” shouted the voice from above. “I shall go and get a key and I will drop the key down for you, so you can open the gates yourself!” She heard the window close and shortly open again. As she raised herself and looked up, she saw a head with a turban peeking out. As promised, a key was dropped down from the window and the woman picked it up. The turban head said: “You can only use this key once, so when you lock the door behind you, make sure you remember the code which is written inside the gate.” That said, the head disappeared. The little woman tucked her glass bowl under her cloak again and went to open the city gate. The key turned smoothly, the gate swung open and she entered the city.

As she took the first steps into the town, there was a hustle and bustle around her, names were called, questions asked and answered, some people looked sad, some serious and some happy. Ever so often she asked somebody, where she could find the Imam and people were quite happy to show her the way. At some stage she got a little hungry and entered this tavern, which had a sign outside ‘HCV support’. The people in the little tavern spoke quite a strange accent and she realised that they must be from somewhere far away, somewhere over the water. But she got talking to them and also explained the problems with her little fish. As she was deep in conversation with some of the people, another woman about her age and rather beautiful, entered the tavern. Funnily enough, this woman had a similar accent to her own and needless to say, they got chatting. The little woman explained why she was here and that she is on her way to see the Imam for some help and advice. The beautiful woman admitted that that was a good idea as the Imam is wise and powerful, but she also offered another way of getting help with the fish’s problems. She told her about a little nomadic group at the edge of the city and said, that the little woman would be very welcome there. The little woman took the address and promised to drop by, thinking that one could never have enough contacts for help. The two women departed company and our little fish lady carried on with her search for the Imam.

When the day started nearing dusk, the little woman reached a very beautiful marble building and new instantly that this was the seat of the Imam. She wasn’t prevented from entering and made straight for the golden throne she could see gleaming in the distance. On it sat a little man, dressed in a white djallabah, with a coarse beard and a turban. The little woman had the feeling, that she had seen the turban head somewhere already. However, she was too overwhelmed seeing the Imam in all his glory, to give this a second thought. She edged forward and finally threw herself to her knees in front of the Imam. She blurted out all the questions she’s been saving for over 2 years and looked at the Imam with much hope for answers. The Imam looked the little woman over and started bellowing: “How dare you ask me all these questions. I would have answered them had you come straight to me. But no, you had to make contact with these dreaded Nomads. Therefore, be gone with you! You will not have my support! You will not have my advice! And you will not benefit from any of the information I hold! In fact, I will just pretend that you don’t even exist. I will say that you were just a troll who I saw in a nightmare!” So the wise Imam spoke, gave the little lady a couple of kicks with his boots, turned around and disappeared in the depth of his harem.

This made the little woman very sad. After all, she had been travelling all this time and had all these questions. When her tears subsided, she remembered the Nomads address. She grabbed her fish, pulled her cloak tighter and went to see them. And this is how the little woman became to be one of the Nomads at the edge of the city and it is heard, that although her and her fish are having a pretty hard time, they are slowly getting better and I think we can safely assume, that they lived happily ever after.

And the morale of the story: Never trust an Imam who relies completely on his own exclusive wisdom, because such belief is madness. And also think, that maybe you can save yourself from the tears that the Imam will cause, by going straight to the Nomads, who for all their odd ways and strange behaviours, always have an open ear and big hearts to accommodate you in your search for support, advice and information.

The End

My dauther, the Alien ....

It has happened again. We have fallen out. Over nothing, as usual. Madam going off into a totally unnecessary rant slinging dirt left, right and centre. Trying to ignore her harsh words and forcing myself not to fall into the trap of answering her writings. If she is in this kind of mood, she is not open to reasons. She only hears, what she wants to hear, every word somebody says, is a personal attack on her. This is how it started in the first place. She took something personal, that wasn't even aimed at her. Went into it though all guns blazing. I just find it so pointless, cause the reason for falling out is a computer game. Somehow I managed to question her authority, although my criticism was of her hubby, not her. She is in one of her manic phases at the moment, very similar to January, when they were here. It's the game and nothing but the game, it become all-encompassing and the borders to real life somehow non-existent. In January it didn't concern me, I was just a bystander, quite an immediate one though. Now her moods and actions are pretty similar. But as I said, she doesn't listen to reason. Better not to say anything.

Quotes from the last IM I had from her:
- You're exaggerating completely. You should aim your aggressions at Pete, that's where they belong.
- I don't want your childish comments on this board.
- If you think you have to flee again ... do it.
- Carry on sulking or take a deep breath and sleep over it.
- This is not helping ME.
- It is undermining MY authority in this game.
- 'I' dont like it.

etc etc. It is always about her. I don't need this aggro and I am a bit at a loss of what to do. We seem to be getting along spiffingly as long as I keep my mouth shut. The moment I express some sort of criticism I instantly get this tirade of hatred. I know she isn't very stable mentally, and I do try and take it into account, but surely even I don't have to swallow everything.

I am a bit hurt anyway, I admit that. When she recently went into the day clinic, she phoned every night and I listened to her, willingly and happily. Since I have started treatment, she has phoned twice. All over Easter the game was more important and I was lucky to get a brief IM here and there. And the 2 times we actually managed to speak, 75% was about her anyway. Some times I really feel like I have been taken for a ride :-(

P.S.: Watch out for the next instalment of this blog. It will be about the trials and tribulations of the hepper community and the relentless warfare of one person against a happy little community know as the Nomads.

I think I might be getting angry ...

Lots of hassle not being able to reach the hospital and/or the hep-team. It makes me angry! Not angry enough yet though, not angry enough to let it out. Oh how I wish I could let anger out instead of bottling it up all the time. I have always been like that. Always had the feeling, I have to be extra pleasant, extra amicable and extra nice to people to make up for my appearance. I have not shouted at anybody for years. Ok, if I am short changed in the shop these days, I WILL say something. That is relatively new though. About a year or so. Before that, I even just took that on the chin. I dont have arguments with partners either. That's why my ex-husband was very surprised, when I told him that it was over in 2000. He just looked at me and said: 'But we get on great!' Yeah, he got on with me great, I hadn't been happy for a long time. So I left him. I had another few relationships since, all without arguments. And they all fell apart. I wonder if there is a course somewhere: How to argue ... or something on those lines. I'd be the first person to sign up for it. Anyway, I know it isn't health to keep all this anger in. But how to let it go? Maybe if Riba Rage really does come to see me, it wouldn't be such a bad thing ...

Dream on ....

Since starting treatment I have also started to dream vividly. Mostly not even nightmares, but pleasant dreams of green pastures, wide oceans and clear skies. So last nights dream:

"I found myself on an Atlantic island. Don't really know why Atlantic, but I just knew. I stayed in an apartment high above the very turquoise sea, beautiful view, but it wasn't my apartment. The one I had rented, I couldn't get to. I did try though, climbed from floor to floor, up and down and up again, testing the heights, all very tight, many corners, partly the levels had not been finished and workmen were building still. I did ask for directions, but nobody could tell me how I can get to my apartment. Whilst climbing around I saw a pile of beautiful, sparkling earrings. Then an antique object comes crashing down from above and shatteres into many pieces. Further on I meet a 'seaman' or 'captain' in uniform who I speak to. I suddenly notice that 'my people' are not talking to me anymore.

Deutung.com, which I use for dream interpretations says:
Island: is a sign of loneliness of the ego in a restless time. If there are people on the island it means fights for higher positions. For a woman an island in clear water can also mean marriage.
Sea: it stands for cosmic awareness, for the original chaos which brings forth all life. It also stands for passion.
Turquoise: It means that a person is too easily impressed.
Apartment: Dreaming of a desolate apartment means you are suffering from an illness (hah ... I would never have known) and renting an apartment means that the current situation will improve (i'll hold you to that, dear dream)
Earrings: To see earrings indicates a new friendship with a woman. To see jewelry in general means that through your experiences you're sure now about your strengths and weaknesses. It can also mean, that your loved one is undecided.
Antique Item: To see old items means to learn from the past to be able to use it in the future. In this case, as it shattered, I reckon it means to let go of the past as well.
Captain: to see a captain means travel and fullfilled longings.

As I said, not a nightmare at all. Can't wait for the next installment.

Had a pretty good day today despite jab yesterday. But last week the Saturday was better than the Sunday, so I will see what tomorrow brings. Tired and weary now, so off to bed.

2nd shot due tonight ....

After having such a bad and somewhat frightening day yesterda, I feel a little better today. Not that the symptoms have gone away, just that I cope better with them. The warrior within has returned with a newly sharpened sword stating clearly: 'I am getting through this, come what may!'

Having a busy day looming in front of me probably does help too. I need to go shopping or I will be stuck here with nothing. Water supplies are at an old time low, 1/2 a bottle left and I know I would not be able to bring myself to drink manky tab water. The fridge is rather bare, I will stock up on soya milk again like last week. 5 litres did the trick. And then of course, things I can cook for dinner. Eating is so important and I don't seem to have lost much of my appetite yet, so I am making use of it. Of course, this week I will take care that I buy a lot of soft foods. Much easier for the pallets when they are covered in blisters and sores. Also cat food is on the agenda. Can't leave the poor dears starve now, can I? All this means taking the car and going to ASDA. Just trying to work myself up to this gigantic task. It'll be ok, I know it will. And I will take the opportunity to walk Isis in the park for a change of scenery for her. And I need some fresh air. Then I need a bath before self-inducing flu tonight. Ahhh, and of course I need to do some cleaning. Pete has managed to make downstairs a dump and it doesn't look as if he has got any intention of clearing it up. I can't and won't tolerate it though, so I have no other option than cleaning it myself. Saying something to him, is as useless as ever - all I get is a stupid grin. Luckily he does walk the dog for me mornings and evenings so I can't throw him out in one of my Riba-Rages and blame it on the drugs :-) And he also does some of the cooking and quite often the dishes. That's a lot more than he did before my treatment. So I feel, I have to be grateful. If kissing feet and official worship would be an option I wonder???

6th day Treatment Horror ...

Seems like on the 6th day of treatment all the things that I have noticed creeping in over the last days have now reached full flare.

From top to bottom:

- open and oozing sores on scalp
- runny eyes
- nose inflamed
- mouth ulcerated (can only eat porridge)
- glands in neck swollen
- slight heart palpitations (probably anxiety I shouldnt wonder)
- open sores on fingers
- abdomen very enlarged
- liver cramps
- kidney pain (or is that just lower back?)
- thrush
- open sores on soles of feet and between toes

All over:

- joint pains
- muscle pains
- fatigue
- disrupted sleep
- night sweats
- night shivers
- excessive thirst

I think that about sums it up. I had 5 attempts at getting up this morning, but only managed to get up properly and dressed at about 2.30pm. Had the silly worry that the system might shut down, although I do know that this only really happens to old people who are bedridden over a long period of time. But better to try and move! I was doing so well the last few days and now this. Still, I have already met some nice people on the HepC Forums I signed up. Even had a dream about them last night, but that's just plain silly hehe.

The week goes on ....

There isn't really that much to report. The body seems to get used to the Ribavirin and so determines the schedule of the day. I take them at 8.30am and usually have to lie down by about 10am. I can usually tell that it is time for bed by my neck feeling like it has just received a great big whack with a tree trunk and my eyes going heavy and runny, then my mouth opens and closes in great big yawns. However, about an hours' snoozing and I can get up again. That means the first highlight of the day: going to the shop with the dog. It's a short walk, 10 minutes there, 10 minutes back, 5 minutes in the shop, but I would never have imagined that it would feel like a treat to be able to do that. Then back at home, pottering around, doing a bit of housework, stopping frequently for a rest, mainly sitting at the computer, reading in the forums and playing EarthLost. I dont even get round to having a session of GuildWars these days, dont feel that I can concentrate. At around 2pm the second highlight of the day: take Isis to the health park and feel wonderful once we have finished the round which takes about 20 minutes. I am not dead yet ... yayyyyy :-) After that, I am ready for another lay-down and/or snooze. Usually back up at 4.30pm, by which time Jessi is bound to phone any minute. Another welcome distraction, and I dont have the feeling that I have to say anything as she talks for England any way. The rest of the evening passes with cooking, a bit more cleaning, maybe half hour TV and more PC until I am so dog-tired that I fall asleep after reading a couple of pages.

However, sleep is very disrupted at the moment. At least up twice during the night for loo and water, often a cigarette too. And my dreams are vivid, disturbing images. Maybe I should start writing them down again as soon as I wake up. That might make interesting reading.

Woooohoooooo, here we go, Ribas kicking in. Off to bed .... laters taters.

In the beginning ....

14^th March 2008

Today’s the day. The day the treatment starts. 2 years and 3 months after the diagnosis. What a wait! Don’t really know how I feel. Just keep thinking: ‘It can’t get worse than I have been imagining and if it’s just a little bit better than the worst, that will be a benefit.’ I have prepared the mausoleum … the bedroom with everything I need, so I don’t have to go far, should I not feel like it. Should have gotten myself a chamber pot really.

My main worry at the moment is that I get to the hospital and they say I can’t start treatment due to either not having had a blood test for a while or something like that. So basically I am keeping my fingers crossed at the moment … which makes typing difficult. Ha ha. I have to joke about things, otherwise I’d go nuts. Jessi told me off severely yesterday for trying to crack a joke all the time, saying that SHE wasn’t in the mood for it. Doesn’t get the fact that it is not about HER for once. Oh well, I suppose that’s kids for you. Always think about themselves first, as a parent you don’t have the right to have problems, be it with health, financial or mental. We’re of course just on this earth to perform to their needs and sort out and listen to their problems.

Anyway, better get ready. The dog doesn’t walk herself and I’ve got a bus to catch. Not taking the car. Bristol parking is notoriously atrocious. More later.

15^th March 2008 Saturday

I have survived the first night of Interferon. Injected myself about 11pm in the end, Dragged it out as long as I could with visits to the loo, changing cat litter, cleaning this and cleaning that, yet another cigarette etc. Then I finally took syringe, sharps bin and a bowl (in case I got sick) upstairs. I chose the spot, injected and sort of sat there waiting for something to happen. I should have realised that subcutaneous isn’t an instant hit! I then just lay down, reading my book and didn’t feel any particular way. Just a bit sore where I injected and my limbs were getting leaden. Oh, and I had an annoying gashing sound in my ears, which prevented me from falling asleep for a while. At some stage I turned the light off and must have gone off. At 3am I woke up, feeling very thirsty and hurting, also in dire need for the toilet. I went downstairs. I realised that all my bones and all my muscles were hurting, my throat hat a big lump in it and my sinuses felt blocked. I crept upstairs again, drank some more water and took a couple of Paracetamols. Fell asleep again at some stage. At 6.15am I woke as I couldn’t lay anymore with everything hurting. Got up as usual, watched Eastenders and got on the computer. Coffee still tastes good – what a relief! Apart from this flu-feeling, it’s actually not too bad. I was even going to take the dog for a walk, but was quite relieved when Pete offered to do it. Maybe I should just give myself some rest today. I am quite surprised, that my head is totally clear, I mean I can think just like normal, no fogginess or weird thoughts. If the Ribavirin is similar, I can see myself getting through this without any anti-depressants.

Talking of Ribavirin, I just hat some cereal and have now taken my first dose (at 8.30am). The waiting for those effects has started. Still drinking coffee and smoking. I will go and lay down for a bit as soon as Pete has left with Isis. The bed seems the nicest place to be at the moment. Good that I treated myself to a couple of books yesterday (Paulo Coelho and Tom Holt). I might even be able to do some painting whilst stuck in bed. Greetings from Frida Kahlo *smile*. And I think I shall move my stereo into my room too. Something I should have done during the week, but didn’t get round to do because of all the cleaning and other preparations.

22.30 h

It is now nearly 24 hours since the injection. The day was generally not too bad, certainly not as bad as I imagined. I thought I would be flat out all the time, but it goes in stages. I feel almost ok for half hour, then start to yawn and feel tired again. Since about half an hour the flu symptoms have really kicked in, although Erik (the nurse) said yesterday, that it should have worn off by now. As always I am special! My joints and muscles hurt like mad now and I am only crawling up and down the stairs. I have just taken a couple more Nurofens and am hoping that this will give me at least some sleep. I am trying to drag out going to bed as it is. Can hardly keep my eyes open, nose and eyes both pretty runny. If I could stay up until 23 h I think I would be able to sleep until 6 am again, maybe again with a break at 3 am or thereabouts. We’ll see! Anyway, I have not yet noticed a loss of appetite, and so I will go downstairs now and get my usual pre-sleep teacake. It’s a bit of a bummer as the lacking appetite was something I thought wouldn’t be that bad being a vain woman. Never mind, it probably has it’s reason and I might just be able to stay a tad healthier throughout the treatment if I can eat properly.

Sunday, 16^th March 2008

Not a bad night. Woke up at 6am pretty refreshed. Vivid dreams all night though, about being on holiday on some island with Werner, staying in some caves, getting splashed with oil from tankers, which illicitly dumped their loads, but turned out not being oil tankers at all, but ships which catch sharks en masse. Saw the dead sharks hanging in the body of the ship. Most strange!

Took Isis for a walk at 8am. I had to get out and get some fresh air. I am just not used being cooped up inside all day. Didn’t do the usual big round around the health park though, just the shortened version. It was raining heavily, as it has done the past 2 days and Isis was not too keen herself. Came back, had a big bowl of cereal for breakfast and took my tablets. Shortly after I had a brief telephone conversation with Jessi. Only 20 minutes … very short for us, but she still had Toby round and I was getting affected by the Ribavirin. Was in bed again by 10am for a brief snooze. Up again by 11 coz I needed a wee. Strangely enough, I do wee a lot the last couple of days, although I don’t drink excessively. Maybe that’s part of the treatment too. Possible that the body tries to get rid of toxins.

Pete is grumpy as always, but did ask me this morning how I feel. I immediately suspected that he wanted to reassure himself that I will be fit for the usual cleaning, washing and cooking. But hey, who knows, maybe he WAS seriously concerned. However, he doesn’t do any more than usual, bike as always comes first. I have the feeling that he expects me to be eternally grateful for taking the dog out a couple of times yesterday, despite the fact that I never get any gratitude for the years of looking after him. Where does negligence stop and mental cruelty start, I wonder. I am still convinced it was the right thing to do to make the break after coming back from Malta. It was long overdue, years to be precise. But for him nothing has changed anyway, I carry on with my household chores, so it’s no bother to him that I now sleep in the other room. Quite frankly, it is probably a relief to him too. He hasn’t wanted any physical contact for a long time, even when my leg or arm accidentally strayed during the night, he used to shrink back. I just wonder why he didn’t encourage the split. Maybe he was afraid that he would have to move out? As I said to him in the letter, there are many qualities I value in him, but if the niggling things outweigh the pleasant things, it’s time to call it a day. We haven’t been able to make each other happy for a long, long time.

Monday, 17^th March 2008 9:30h

Feeling when waking up this morning: not only 1 but 2 busses had crashed into me. Got a little bit better after the Nurofens. Then I took my Ribas at 8.30am, now I feel bad/worse again. Will have to have a lie down in a minute. My liver is cramping (is it psychosomatic as Pete suggested?) and my head feels like a mushy balloon. Luckily this wears off as the day goes on usually, just to be replenished with the evening dose. It’s a wonderful life!! NOT!

17:40h

Gosh I am so angry at everything, and totally pissed off and could just burst into tears at anything. Must be the drugs. Well they say, personality changes are amongst the side effects. I also feel guilty, for not functioning properly although I have managed to do my household today and shouldn’t feel guilty towards Pete, just because I will have to ask him to take the dog out tonight. After all, I coped with taking her to the shops and the health park today. In between all this, I am so tired and pissed off, don’t know where to put myself, don’t know what to do and don’t know where to start anything. Grrrrr I am mad mad mad at everything and everybody!!!! Especially myself!

Tuesday, 18^th March 2008 9.20am

Apart from being moody (nearly through a pizza at the wall) I didn’t do too badly last night. Took the Ribas at 8.30pm, after having cooked and done the dishes, and that after doing the hoovering, sweeping and mopping kitchen and porch, washing, drying, tidying away and changing my bedding. I do twice the household chores to make up for Pete having to take the dog for a walk mornings and evenings. But it has always been like that, for every little thing somebody else does for me, I do 10 other things for them. This certainly shows some mental illness/impairment. And despite doing all these things, I STILL feel guilty having to ask Pete to take the dog. I wish I could do it myself and then be able to cook for just myself and just do the things I need to do to feel comfortable. In short … I just wish I was independent. I am annoyed this morning because everything was so nice and clean last night, and then Pete left his crumbs all over the place again this morning and spilled rabbit food everywhere on the floor again. I feel like I am fighting an endless battle and he doesn’t take a blind bit of notice, when I ask him to do something, i.e. clear away his mess from the table in the living room or not leave 3 pairs of boots standing there or not occupy 1 ½ sofas with his junk. He just grins at me when I mention something and does fuck all. He makes me furious and I choke at the swallowed anger, but I don’t know how to express it. Past experience has taught me that people get violent if I convey my annoyance. This is probably why I shut up and put up with being the skivvy. I wish I could afford some therapy which could help me with these issues. But of course, that is well beyond my means. Well, maybe the personality-changing treatment will finally change me into the angry person on the outside who I am already on the inside. One can live in hope!

Took this mornings’ dose about an hour ago and as yet don’t feel too bad. It is the most stupid therapy though, the moment the effects of the drug wear off you have to take another dose to make you bad again. Isn’t that paradox??