Endometriosis and Me

Monster drug.

I took diclofenac for about eight months, three times a day, 150mg in total. It was the only pill that took the edge off the joint and muscle pain and hell did I notice it if I ran out and didn't take my dose for a day or two.

Recently there was a health scare concerning it. The TV news told me that it was linked to heart problems, but that as long as you didn't take it in a high enough dose for long periods of time then you were probably alright. I mentioned this to my doctor and her response was 'I've been on holiday and not heard anything.'

A few days ago, mom brought to my attention an article in her woman's magazine about said drug. The high dose of this drug was 150mg a day and the suggestion was this shouldn't be taken in such a high dose for more than a few days at a time. Hell.

The arrythma I suffered with didn't come on during Prostap, it came on some time before Christmas. Which was when I started taking diclofenac and that old anti-depressant whose name escapes me for the minute.

Then today I came across this:

http://www.fertilityplus.org/faq/nsaids.html

"Infertility may sometimes be associated with NSAID consumption"

"Non-steroidal anti-inflammatory drugs are widely used in the treatment of inflammatory joint diseases. Many patients suffering from these disorders are young women during their childbearing years. We report three cases of infertility where the cause may have been NSAID-induced 'luteinized unruptured follicle' syndrome. This phenomenon is well recognized in obstetric circles, and we would like to bring it to the attention of rheumatologists since it is not documented in the rheumatological literature."

Fuck, what do doctors shove at us?

Thankfully, with the quite scarily wonderful Inflamol supplement I've found no need for diclofenac and have been off them for weeks. Oddly, or not oddly, the arrythma is the quietest it has ever been.

Just tought I'd share.

I'm a very bad daughter-in-law. We were round my parent-in-laws yesterday for lunch and I managed to fall asleep in front of everyone. Not at the dining table you understand, but after when we were lounging in the living room.

Truth is, I'd had a late night and an early morning, and I got fed the most humungous meal and my blood sugar levers just couldn't cope. They spiked and then plummted to the floor about half an hour later. And then when the conversation got a bit boring and I was struggling to stay awake, I just thought 'what the hell'. It is the only time when it has proved to be a good thing that people misunderstand what's wrong with me. I hope they just thought 'poor girl, she's just chonically fatigued' rather than 'what a rude bitch', which is actually nearer the truth.

My PIL had had a few glasses of wine and when that happens they tend to go over old stories about holidays they've had. I tried a few times to add to the conversation, but when you are spoken-over when you try to say something and no one comes back to you and says 'what were you going to say?' you kind of get the hint. So we all let them get on with it for a few hours, (but I was the only one who fell asleep!).

I was glad to escape the conversation, truth be told. Obviously it was hard for me to sit and listen to all their wonderful tales of travelling and forthcoming adventures when we haven't had a proper holiday in two years and have had to cancel our holiday this year for my operation. I'm sure they don't mean to be insensitive, because travelling is their passion and they were drunk and they just wanted to share it all. And I don't mean to seem jealous, because they are amazing people people who do volunteer work even though they have retired, and I hope I don't begrudge them a second of their time away. But still, it was hard.

I think what made it worse is the shock we had this week when dad's car insurance was suspended. He phoned to let them know about the Parkinsons, expecting a higher premium maybe, but they told him that they might not be able to insure him at all and immediately halted his insurance. The idea that he could suddenly never drive again, not for the rest of his life, was really upsetting. Not only would it be immensly disrupting to their already very difficult lives, but dad's passion is and always has been cars and driving. It's a big part of his identity and it just seemed so cruel.

The insurance was re-instated the next day, so he can still drive for the time-being. But it brought it all home just how much this illness changes everything. Memories of him driving us all to A as a family, the head of the household, protector and provider. He did this only four years back, but it will never happen again. In fact, I can't think how and when mom and dad will holiday again once dad has to give up driving. He's not fit for coach or train journeys. I've been plotting about how I would take them places and take my holidays with them, but dad can't travel far, so it's doubtful we will ever get as far as A and that thought just breaks me down. It's so hard dear reader, so hard all of this.

And so yesterday I was better off just getting some sleep whilst my PIL waxed lyrical about what all the world has to offer the rich and the healthy. Their next adventure is to areas of America my dad always wanted to go to but never did, and now never will. All the places you see in the cowboy movies. That was an extra twist of the knife. They said they'd send him a card from Tombstone, and I said that was a lovely idea, but in truth I worry it will break my dad's heart.

Good news. I'm not quite getting to the place where I spent my summer holidays as a kid, A, but I am getting near enough. Next Saturday me and some of my family are going to S. The other morning when I woke up after dreaming about A, I didn't feel so bad because something akin to it is happening. It's only for one day, but I'll stop over at mom and dad's the night before because it will be an early start, and my brother is driving us there.

I really need to get away for just a short time.

I don't know quite why I had my melt-down the other day. It does happen from time to time. I was really depressed that day, but it was a chemical sort of depression not one of the mind - if you get me. But so many good things are happening right now, and life has a chance of turning good, so it was easily gotten over.

Well, yesterday was a laugh. I spent most of the day doing housework with tears streaming down my face. I just woke up in that mood and it stayed all day. Don't know why. Could be a reaction to running out of CoQ10. Could be that I missed a pill on Friday night. Could be the full moon rising with Jupiter in descent. Who knows.

We had a bloke come round to give us a quote for our new intended kitchen last night, so the house had to look good (pride, just pride). Of course, I wasn't really in the mindset to be able to "pace" so I completely over did it. Got into that thing where everywhere you look things need cleaning or tidying. Positive is that the house looks better than it has in weeks, negative is that it bought on a whole load of symptoms which meant I was exhausted but couldn't sleep. I'm sick of this brain pain. Last night it felt like a small electrical current was being passed through the centre of it. Sitting up made it easier, but i couldn't sleep sitting up, and I was so tired. And it was so hot.

I was glad when morning came. Not that I have anything much to do today. I'm giving mom and dad a lift to and from the Parkinsons clinic, but nothing else. Mom told me yesterday that dad thinks the tablets he's been taking are wearing off. Yet when I spoke to dad last week he said he was still doing well. Am I being selfish when I say that I wish mom wouldn't tell me the truth? I wish she'd just protect me from it a little, coward that I am.

Still, I am not dripping snot and tears over the keyboard this morning, so that's a start.

I want the beach. I want the sea. I want to go to the place of unspoilt beauty where I spent most of my summer holidays as a kid.

I get this every summer. I keep dreaming about the place. Last night I dreamt I was in a house by one of the small beaches there, on holiday alone. The house was a huge but run-down Victorian building, with shabby carpets and curtains, and empty of furniture. Great views though. It was called Memory House.

Later in the dream my brothers and mom turned up, but I realised that meant it was time to go. A large sprawling sort-of tea-shop that took over a whole lane and several shops sprung up. My one brother didn't want tea, my mom and other brother did. I was torn between the two, but really wanted a cup of tea and a cake.

No dad in the dream. Wonder what that means. Last time we all went on holiday to this place was about four years ago. Mom and dad took my brother and his son and I came along at the end of the week to visit them. That must have been about four years ago and dad was ill then. I remember coming back from the three and a half hour journey, driving a car with no air con in temperatures as crushing as we are seeing now, and collapsing in tears in the hallway of my home. In tears because I had had to leave the place and in tears because I thought then my dad was getting old. He seemed so frail compared to how he had always been. Always muscular, always strong, afraid of nothing. Old man now.

That memory still hurts, but I treasure the actual few days I spent there with my family. I was working then and it was so good to be out of the stifling office and to be there, actually be there.

Long, wide beach and walks around the coast. Going to buy a carton of milk walking through a field and dirt path. No traffic in sight. The view of the mountian and the ferries sailing towards the horizon. Sitting on the rocks reading magazines. BBQs. Playing cards at night. The hissing oil lamp. The muffled voices of people outside the caravan. A trip into C for a bag of chips eaten on the harbour wall. Dad always sunbathing, mom always cleaning.

I could go there today. I could drive there now and be there in less than four hours. But no one would be there to greet me. It'd just be me with memories and I don't think I could bear that. I keep thinking maybe I'll get me and Hubby there, we'll book a B&B and stop over-night. But it wouldn't be the same. Not without my family.

What I always wanted and expected of course is that one day I would go there with my own family. I imagined me with new baby on the beach, and hubby with the toddler down by the shore. The kids are breaking up for the summer holidays and I have no kids. This is harder than Christmas. It's hell. I go into the supermarket and its full of goods for family holidays, full of inflatables and kids beach wear and I remember. I rememer being a kid and the excitement of breaking up from school one day and going on holiday the next, and I remember how it was when we decided to try for a family and all those pictures I had in my head. Driving to the sea-side with the kids in the back of the car, getting there and unpacking everything whilst the kids run to the beach to play. But it never happened, it's never going to happen and it's so damn unfair.

I rattle around in this house, this family home we bought to bring up our kids and I have nothing to do. No toys to clear up, no school run to do, no one to feed or look after, and what's the point? What is the point? I can't do anything but sit here and cry. It's so fucking unfair

Had an encounter with Gran last Sunday. My dad's mom and my only living grandparent.

I feel awful saying this, and I hope it doesn't make me look evil, but she is such a horrible person.

As a child she used to decsend on our house for Sunday lunch and the whole mood of the house would be black. She never enjoyed being amongst us as a family, she never came for the atmosphere, she never took an interest in her grandchildren or their lives. She used to come to be waited on hand-and-foot and to talk all afternoon. Not have a conversation. Just talk. And I mean ALL afternoon. After Sunday lunch we would all go and relax and watch telly and off she would go. She never drew breathe. Mostly it was about her neighbours, although it was hard to follow what she was saying because she wasn't saying anything, she was just nattering on and on and on, fudgung word into word into word into word.

My mom would be the one who would cop it. She was the one who had to sit for hour after hour nodding her head and making interested faces. The rest of us just watched Eastenders and went to sleep.

I thought as a kid how rude it was to come into someones house, ignore everyone, and then rattle away about things that interst you and no one else for hours on end. Not the ideal guest. But she was gran, and we all just put up with it, and nobody ever said anything.

Only its not been like that for several years. After more than twenty-five years of enduring this every third Sunday, mom has been cracking for a long time. What makes it particularly difficult for her is that Gran is nasty to her. Thoroughly nasty. She refuses to say hello to mom when she comes into the house, ignores what she says except to argue with her, and then makes nasty comments to all and sundry. Mom has always waited on her like she's a Duchess, yet she has never once been thanked.

My mom takes this out on dad. She is openly hostile to dad about gran behind her back. And what has dad done to solve the situation over the years? Nothing. He and his two sisters have the same family issues with gran, but none of them has ever addressed her about her behaviour. I suppose it's too late now, she's in her nineties, they should have said something to her years ago when she was a young overbearing witch, not an old one. Too late to change her now.

Gran used to really hate me. I am her only granddaughter and she is openly bitter about the fact that her two daughters only ever had sons. Her favourite grandson was contiually touted before me as the ideal specimen of a grandchild, but it never really bothered me because I had all the love I could want from my maternal granny and made it my business not to care much what she had to say about me. And she always had plenty to say, none of it good. I've always been quite hurt that dad never defended me to gran, but then he never defended mom so why would he defend me?

I made my mind up to never invite Gran to my house again over the way she behaved over my wedding. There were no words of congratulation, only moans about having to attend a wedding and break her routine. She never said one word to Hubby, not one word of congratulations, not before the wedding, at the wedding, or after the wedding. And she picks on him, like she picks on me and mom. She's obviously taken against him for whatever reason. So, not being like dad, I decided that Hubby didn't have to put up with that, and I keep her away from him and I keep myself away from her. She is not welcome in my home.

Though I've never made a big deal of it. I am faultlessly polite to her and buy her birthday and christmas presents,d espite the fact I'ven NEVER had any from her (she just gives dad a fiver and he buys a card fro her to write on and put it in), not even as a baby! I do my best with her for the sake of my dad.

But last Sunday we just happned to be at mom's for the afternoon when she came down for tea. I must say, she loves me now. Since I got ill, she loves me. I have a sneaky suspicion it's to get at mom (divide and conquer), and I don't trust it, but it is very strange. But being with her there again, at mom and dad's, it was like turning the clock back twenty years.

She still igorned mom, twice. Pretended she didn't hear her say hello. Like always. She still sat there arguing with whatever mom said, which was hard enough to watch, but what really riled me was how she is still treating hubby. She was less than fussed at his warm welcome which is rude enough in itself, but then later, out of the blue she told him he was fat. "I'm not going to say anything" she said inexplicably just after she had told him how overweight he was.

It was what I might call a smashed glass moment. You know when a glass smashes to the floor, and you just stand there, looking at it, not quite beliving that it has smashed? It was like that. I just sat there, not quite beliving she had just been as thoroughly rude as she had been. Dad witnessed it and said nothing, good bloody job mom didn't witness it ecause she loves Hubby and would have gone mad. It was the way she said it, with such disgust. If any member of Hubby's family had ever treated me that way i'd be really upset, but they never have and I feel so angry and embarrased that he gets treated like that by my family.

We made our exit. After she said that, I just thought, that's your lot granny dear. That's why I don't like spending time with you. That's why I don't phone you. That's why I don't love you.

I feel for mom having to still put up with her every third Sunday. She's being going through a lot with dad's illness, and at her age she should be relaxing and enjoying life, not putting up with that.

As for me, I have to phone her on my birthday (ha! just remembered! I'll be in hospital so I won't be able to phone her! Hurrah!), and then I'll have to see her on her birthday in October, but I might be able to get away with not seeing her at Christmas, we'll see.

Say this quietly and tap on wood, but I'm doing alright lately. Five days out of seven I'm sleeping the night through and waking up feeling great. I have less stiffness and joint pain. I'm enjoying about five to six hours of decent energy levels a day, which is down from eight, but still very good. Moodwise I'm feeling calm and optimistic and only having low moods with the night-time attacks. I'm enjoying myself a lot more these days, and I've not enjoying life for years, not since the endo pain started in 2002. Reader, I think I've rediscovered feelings of happiness.

The remaining physical problems are, in no particular order...

The night-time attacks - waking up dizzy, tinnitus ringing, feeling sick, and getting up to find my eyesight is very bad and the room is spinning. These attacks are often accompanied by feelings of doom. They leave me weak and exhausted. I have to sit up in bed and let my head drain.

Fatigue - not tirednes dear reader, but fatigue. My eyes especially seem only to have a couple of hours worth of energy in them. A couple of hours on the computer or reading a book and they are done. I used to work 40 hours a week using a computer, read the newspaper in my lunch-hour, and read and write at home at night. Now, a couple of hours a day is my limit for any of those things. It is very frustrating. The other afternoon I just had to lie on the bed for two hours, a wheatbag as a weight across my eyes to try and stop them twitching. I wasn't tired so I couldn't sleep, and eventually put the radio on just so I had something to listen to whilst I lay there.

Lack of Stamina - especially in the shoulders. Sitting up without support is hard for any period of time beyond ten minutes. I couldn't stand up unsupported to for ten minutes, but I can walk around a lot better. I have no physical strength at all and my body is a bit mushy.

Weight - I'm a half a stone to a stone heavier than I would like to be, but a healthy diet is not shifting it. For at least three weeks now there has been no sugar, no bad fats, and plenty of salads. I am a little slimmer than I was a month ago, but I would like to get rid of my belly.

I'm going to buy a home Treadmill to start on my fitness again. This should hopefully clear up the last three things, although I'm not kidding myself it's going to be easy. I'm right at the very bottom of the fitness ladder and I know I'm going to find it hard going, but I used to love being fit so it will be worth it.

The lessening of stiffness and joint pain I am tentatively ascribing to the Inflamol supplement. Since I have been taking it I have noticed this improvement and it hasn't fluctuated, it remains steady. Of course I am also taking Omega Oils and Evening Primrose Oil and magnesium and so they may be adding to the effect. I noticed walking around the supermarket the other day that my shoulder muscles felt loose and almost tingling - like they were getting some blood supply back into them. I'm not even taking Diclofenec anymore, not for at least two weeks, and for the last eight months they've been my crutch as far as the fibro goes. Think a massage would help things along, and so might organise this coming week.

And the steadyness of mood and good sleep I attribute to my best friend 5-HTP. I don't know where I would be now if I had never come across this supplement. Thanks mom.

Drugs regime has been slimlined, which is good for my sanity and good for my pocket! Here is the latest routine, in the order I take them:

5-HTP
CoQ10

EPO
Omega 3-6-9
Omega 3

Inflamol
Magnesium

5HTP
CoQ10

5-HTP

I've stopped the Acetyl L-Carnitine because they seemed to be giving me the night-time racing mind thing again - even though I reduced it to one a day which I took in the morning. My energy levels also reduced alot whlst taking ths supplement, and they have only come up again since I stopped taking it. That might have been the weather, because it's been scorching hot, but this last week has been the hottest of all, but I've still had more energy and I've not been taking it. I may try again in the winter if my energy levels drop again, but I don't think it suits me, so we'll see.

Went to see the ENT people. I was in and out in half an hour. First they gave me a hearing test and then after a short wait I got to see the Doc. Don't know who he was as he didn't introduce himself.

Doc told me that there were 3 things that could cause tinnitus, and I didn't have the first two because my hearing is apparently fine (news to all my friends and family who get sick of repeating themselves all the time), but the 3rd thing that can cause tinnitus is... stress and depression.

As soon as he said this my FOB OFF alert flashed before my eyes.

The nurse here has a leaflet for you, he said, that will help you with relaxation. And the nurse who had been sitting quiet as a mouse in the corner of the room stood up and offered the things to me. I realised that she had ben sitting there from the start, with leaflets, and so before he had even spoken to me the Doc had decided what he was going to do with me.

I just couldn't walk out of that door with so little understanding of what was the matter of me and so little help. So I asked about drug induced tinnitus, which he had not mentioned, and which I know does happen. Then I did a bit of Prostap speil. Then I told him again how I get these tinnitus/eye blur/dizzy attacks at night, and that they wake me up because they are so intense. I'm not getting dizzy when I exercise (ahem) or when I'm hot, I'm getting them when I'm alseep and I don't think that can be right.

He agreed. He did a few balance tests, then said he was going to order an MRI for me just to make sure there was nothing sinister. Thinking back he said he wanted to check the inner ear, and I should have asked him to ask them to look at my pituitary gland too. But I didn't and that's bothering me a little, becaue I would get some real peace of mind if they could look at that and say they can't see anything wrong.

Doc also said at one point that "don't worry, we'll find out what's wrong with you", which to be honest I don't have that much faith in as he was all ready to shove me out of the door with only a leaflet for comfort before I chanced to open my gob. Doesn't convince me he's the kind of Doc who goes all out to help his patients to me.

I think putting that I had fibromyalgia on the med form I filled in for them influenced him. He mentioned it a couple of times, even telling me that it was "quite common" and "nothing to worry about". Both of which is bull. I think maybe he saw that and saw pyschosomatic. It was only the idea that I'd suffered side-effects from a drug that got him away from thinking these attacks were my imagination and not symptomatic of a real physical problem. I'm quite tired of having to convince doctors of this.

Anyway, I await the MRI.

Forgot to mention, got the date for my laparoscopy. It's on my birthday. The week we were supposed to be going to Amsterdam.

Oh how I laughed.

I went to X to meet Mark, my Employment Development Officer again and his assistant, shall we call her A?

The moment I saw A, I thought I knew her. As Mark introduced us and blathered on, I almost asked her if we'd met before, the feeling was that strong.

We were all getting on fine, although I did find her not quite as openly friendly as Mark. A was reading my CV and remarked that I'd worked at Big National Company. She'd applied for a job at Big National Company once, she said. Two interviews and a presentation, and she didn't get then the job. That was when I knew where I knew her from. I'd interviewed her. And turned her down for the job.

I remembered her very well because she was an excellent candidate and interviewee, but in the end someone else just had the edge over her. I remember concerns about her personal life too. She seemed miserable and unhappy with having left her family up north to come and live here with her husband. We thought that might effect her work. She needed the job though to move out of her in-laws place, and I remember the call when I told her she hadn't got the job. I rememer it because it was such a difficult call and she'd been such an excellent candidate and a nice person.

She didn't say if she knew who I was, but as I recognised her from the off, and she cxould see the department I worked for on my CV, so chances are she did.

So now the person helping me find work, the person to whom I've had to be open and vulberable to about being out of work, is someone I once turned down for a job. Someone I once had the power over to change their lives. Actually the job she applied for was lousy, and she's got a great job now doing what she's doing, so as it turned out it was actually for the best. But I'm sure itdidn't feel like that at the time. And I'm sure the memory still hurts.

Now I'm getting e-mails from her suggested obvious and cliched things to put in job apps. Feel slightly embarrassed.

Anyway, I've aplied for my first job. Deadline tommorw and I only found out about it on Weds, so I've been working on it on and off since then finally finishing it tonight. It's for a few hours a week at a local art gallery, the one situated, as it happens, right outside the building where Hubby works. Gallery assistant. He's handing the app in at reception for me tomorrow. It's a start.

Since adding the Acetyl L-Carnitine, Inflamol and magnesium to my regime of supplements things have not been great.

For about the first week and a half, I slept for England. I slept all night and I wanted to sleep all day. My energy pod was actually down to about one to two hours again, when I'd mostly been getting a good eight hours of normal activity in a day. I stuck with it all because it might have been down to the weather. It's been very hot here, on and off, and I thought it would be a great idea one day to sunbathe in the mid-day sun. Just to catch some rays. I lasted half an hour before it felt like my blood was boiling and had two days of cold showers trying to bring my soaring temperature down. My brain felt like it was a water-logged leather football squashed into my skull.

I did try and resist the daytime sleeping at first, but I was getting intense and frightening flashes of anger usually aimed at inanimate objects that just wouldn't do as they were told, and my eyes burned up with the neeed to sleep. So I just gave into it. Everyone who's lucky enough not to be at work on hot days has afternoon naps (afternoon sleeps of four to five hours), right?

Anyway, all change. Now I don't seem to need much sleep at all, which sounds like it should be good, but, of course, it's not. I'm falling into bed at night, before midnight, exhausted and get to sleep quite easily. Good, good. But then I'm waking in the wee hours (4.30am this morning for instance) with that old racing mind again. My mind's just chattering away to itself, writing blog posts, poems, stories, all very vivid and all too much noise before 8am in the morning.

And I'm waking up hungry. In fact I'm hungry most of the day now, which is new. Blood sugar levels are not doing good at all, which is causing havoc with the tinnitus and making me fat. And on waking I feel hungover, with accompanying double vision, shakes and heavy head. Not fair when I haven't the night before to enjoy.

I have to get up, eat, do something to burn off the mental energy, and then sleep again for another couple of hours because the temporary energy burst is mental not physical and I'm exhausted, which means I'm getting up mid-morning feeling like shit.

I'm no longer tired in the day, but the upshot of that is that I've been overdoing it because I feel slightly manic. I even had a little bout of anxiety the other afternoon, which I've not had for months and months. Because I'm not feeling tired, I find it very hard just to take periods of rest in the day, because it means just sitting there watching TV, which I'm not great at. And I've had so much to do lately. This whole job search thing, house things that have needed sorting, people's birthdays, visits to make, on top of all the usual. And so because I've got lots to do and I'm not tired I'm overdoing it, which is not helping.

Some days I'm upping the dose of 5-HTP to 400mg, because the brain pain comes back when my sleep is disrupted. This worries me more than anything else.

I'm not taking anywhere near the suggested dose of ALC for CFS sufferers, but I've just decdied this morning to drop it from 400mg to 200mg and see if that makes a difference.

The good news is that I think the Inflamol may be having some small effect. For years now the morning stiffness was bloody agony and I have to say that had decreased to a just noticeable degree. It's not dramatic, but enough to encourage me to keep it up.

Post-exertional exhaustion remains a problem, as does lack of stamina effecting my ability to stand or sit unsupported for more than a few minutes at a time.

You know sometimes when you just can't remember what day it is? I've had that all day. Over and over and over again.

After my afternoon nap I woke up thinking it was Friday. Then at some stage I realised it wasn't Friday at all, it was Tuesday, because I met with Mark on a Monday and this was the day after.

Then later I picked Hubby up from getting his haircut and he suggested we go for a bag of chips. I said, but we do that on a Thursday. And he said, yep, it is a Thursday. And you know what? I wouldn't believe him. I was convinced it was Tuesday, and I honestly felt like crying when he kept telling me it was Thursday because I couldn't figure out whether he was having me on or not.

Finally I saw mt diary said that I was meeting Mark on a Wednesday, not a Monday, though I can't remember what I did on Monday and Tuesday.

Now all evening I keep thinking it's Tuesday still. I couldn't figure out why Hubby was putting the bins out, and why we'd run out of food so soon in the week. Now it's suddenly hit me that Thursday is jobs day in the local paper and that I've been looking forward to it, but as it is 11.15pm have sort of missed my chance to buy it.

This doesn't feel like an ordinary "oh i'm all mixed up about what day it is". This feels like my memory is playing up big time.

I met with Mark yesterday about getting back into work. He was a lovely guy actually. I think I got him wrong on the phone. He just fusses about stuff and goes all around the houses on every point. He seems to have some kind of OCD about getting things finished in one go, which is the exact opposite problem to me.

In short these "New Deal" things, for which he has put me down, are really I think for people who have no savvy about the working at all. People who've never really worked, don't have a CV, don't know how to apply for jobs. That sort of thing. Mark's job is basically to hold someone's hand thru the whole process of getting a job, writing CVs, finding jobs to apply for, filling in applications and sending them off, going with people to interviews, providing character references instead of proper references.

This is what we have agreed for me:

I'll visit his offices next week (we met at a local jobcentre) and meet his assistant so that she gets to know me.
He and his assistant will look out for jobs for me and make me aware of them.
His assistant is good at filling in applications forms for X council who I am interested in working with, so she will help me there.

I tried my best to explain how my ill-health restricts me, but inevitably I end up saying too much. It didn't help that the definition he had of my illness was "endometriosis causing Chronic Fatigue". I mean, what happened to the Syndrome part of it and how did it get mixed up with endometriosis? I'm telling you this silly name Chronic fatigue Syndrome does none of us any good. I encouraged him to refer to my illness as Fibromyalgia - no one understands that at all, which is better than the assumption they make about CFS.

Anyway, he said I was impressive (in a slightly awkward way, I'd only just sat down, it was weird). But the thing is, I wasn't the least bit nervous and I'm quite confident in such situations. In fact, thinking back, I never had a shred of nerves over any of it at all. I suppose he's not used to people who are so self-assured. When I asked at the end if I was allowed to look and apply for jobs myself, he nearly fell off his chair. He said it was music to his ears and that no one had ever asked that efore. But the thing is, people don't ask because like me everyone probably feels that it is breaking the rules somehow. If you're on a benefit for being too incapacitated to work, then by looking for work, are you not saying you shouldn't be on that benefit anymore? This is why I wanted to do it thru one of these agencies, so that it was legit and above board, and I didn't risk losing my IB before I was ready. Now I find that I could have just be going ahead an doing it on my own. I don't think that is made clear to you. All the DWP say when you get "approved" for IB is that you have to tell them if your illness or circumstances change.

I'm quite excited about the prospect of work. I'm only applying for jobs that I think I would enjoy and I'm only going to do part-time. If I strike lucky with a job then pretty much all of this horror will be behind me and I'll be off my side-road and back in the mainstream of life. That's what I want.

I'm not doing great in this heat. I was fine when it was just warm, but now I'm havign trouble. I guess I'm not much different to anyone else; the heat makes everyone sleepy and lacking in energy. I just think that for those of us tho who have a trouble with energy and stamina in the first place feel it more.

I've got a cold-routine at night to help me sleep thru. The bedroom unused for an hour before bed-time to keep the temperature in it as cool as poss, no lights on, no telly on, curtains open, windows open to the max. A cold shower. An ice-pack for my neck and back. So far it has worked.

Last two days tho, I've woken feeling very dizzy. I'm lying in bed and the room is spinning and when I get up to go I'm all over the place. Sitting on the loo everything spins so fast I have trouble keeping on it! This is new for me. It might be the supplements, it might be the heat, or it might be both combined.

I'm up quite early, but by afternoon I'm very low in energy. Can't keep my eyes open and feel sick. So I have a nap and feel better afterwards. Not really up to doing anything all day. I read, cook and wash-up and that's it. Luckily I did a fair amount of clothes washing and ironing last week, and so that's not a worry for the moment, but this place could really do with a hoover!

Eyesight seems worse too and my bones ache throughout. I'm keeping well out of the way of the sun. Pity, but sensible.

Ok. For my records. Full update of new drugs regime.

Daily:

300mg 5-HTP
180mg CoQ10
400mg Acetyl L-Carnitine (with 500mg Alpha lipoic Acid)
600mg Magnesium
95mg/146mg/90mg Omega 3-6-9
100mg Evening Primrose Oil
And also 250mg Inflamol! (blend of Scutellaria Biacalensis and Acacia Catechu)

From here:

http://www.thorne.com/altmedrev/fulltext/alc1-2.html

"Another potential application of ALC (Acetyl l-Carnitive) involving immunomodulation is in the management of Chronic Fatigue Syndrome (CFS). Low serum levels of ALC have been observed in many CFS patients. The clinical presentation of marked fatigue correlates with periods of low serum ALC while periods of recovery are characterized by higher levels of ALC. 15 Further implications for ALC treatment of CFS patients are findings that plasma levels of ß-endorphin and cortisol are raised in humans given an I.V. bolus of ALC.16 As abnormal cortisol levels have been observed in some patients with CFS, and the myalgic symptoms in this condition are well known, ALC administration might be particularly helpful in normalizing HPA perturbations via feedback mechanisms and decreasing myalgic pain via peripheral neuron response to ß-endorphin.17"