Endometriosis and Me

When I was in my early twenties I had the worst job I have ever had. It was in a call centre. Hours on end sat in front of a screen with those damn headphones on. Call after call coming into your ear, meaning that you constantly had to employ your mind to the repetitive task involved. No chance to daydream, not a second to relax or chat to you neighbour. Call after call after call, from people with little social skills who often rude and sometimes very agressive. Hard targets to meet. No job satisfaction. Having to put a sign up when you wanted a loo break, which you weren't allowed to take less than twenty minutes before a schedlued break, and which was recorded on your stats.

We were treated no better than a machine part, a cog in the wheel, every ounce of productivity squeezed from us relentlessly. One time when I was on holiday in Devon away from the hellhole I sat and looked at the sea and cried. It seemed luxury beyond belief to look at what I wanted to look at, to be allowed think what I wanted to think, to sit where I wanted to sit with no one monitoring me, watching me.

I didn't handle it too well I'm afraid. I fully resented having to be in that building and didn't everyone know it. From the moment I came into work my one and only thought was to get the torture over and done with and get out.

This made me a miserable person. I was lacking in humour, surly, bitter. Colleagues and customers were treated with the same contempt.

But I couldn't keep it up. I couldn't keep up the scowl and the low, depressed voice, and the lack of eye contact. It isn't actually normal for humans to spend many hours a day like that, day in day out, not unless they are truly depressed and can't help it, which I wasn't. I soon discovered that actually it used up far more energy to keep up being so miserable and only made the job even worse. But that to keep it up would probably mean that I really would become depressed and then I'd be in trouble.

I didn't, thereafter, go into work with a song in my heart, but i did lighten up and try and make the best of it. It was easier being a nicer person to colleagues and customers, took much left effort, came more naturally. It certainly made things easier in the long run.

That was the story I would have liked to have told to the check-out woman at my supermarket today. It is the third time in the last few months that she has pushed my shopping along and each time she has done it she does so with a face like thunder. She mumbles, she snaps, she doesn't do the thing she is supposed to do, like ask if you want help with your shopping. She hates the job, she resents being there, and she sees absolutely no reason not to let me know just how miserable she is.

I think the woman in front of me even asked her if she wasn't in a very good mood, because I heard her reply in as dark a tone as she could muster, "I'm fine."

A one off might have meant a bad day, something wrong. Three times in a random sequence means she must be like it a fair amount of the time. I'm glad I'm not her manager. And I bet her colleagues aren't keen on her either. In short, she's creating far more negative energy around her than there need be, thus making things harder, her load heavier, her job worse.

I refuse to take her attitude personally. I act as if I haven't noticed her rudeness and yet I don't try and cheer her up either. I don't let her effect my behaviour in anyway. It's her hellhole - I got out of mine.

And again, this afternoon, I finally got the call from X Council about helping me return to work. Mark, for that was his name, made a particular effort to let me know that he wasn't pleased with me. I think someone must have given him a kick up the arse for taking over a week to phone me, and he decided - in exasperated tones - to make sure that I knew all about the fact that he had phoned me several times and that I hadn't been in. As if I should have been sitting by the phone, slobbering for him to ring me, and not stepped foot outside of my house until he had deigned to do so.

No thought of a simple apology and explanation, which would have been the most straight forward way of conducting the conversation. Nope. Blame and exasperation, implying that I should be the one apologising and explaining.

But the way I see it, is that he is here to help me. He is the one being paid to do a job, not I. He has standards to work to. I don't. I could have, if I had chosen to be, very off hand with him and argued back, because he sort of seemed as if he was spoiling for a fight.

But, instead, again, just like with the check-out girl, I chose to ignore his rudeness. If you work in Customer Service long enough, and get good at it, there is a neutral tone of voice you learn to affect that will see you through almost any situation. I used that. I think it perplexed him. I don't think he's used to people upping the stakes on what level of professionalism is expected from him.

He was flustered I think. At first we were going to meet, and then he decided that he would rather phone me again to arrange to meet. Whatever. You lead, I'll follow.

I know I probably sound like a know-it-all, but I really have learnt to be very good at keeping a lid on my unhappiness and behaving as if nothing is wrong. It's simply not fair to make other people your punchbag. Not to your family, not to your friends, and not to the person who has chosen you to process her shopping or help her find a job. Being polite makes things easier. For everyone. I just wish other people would learn that too.

Wandering around the fabulous Dr Hyhill site, I came across this article again.

http://www.drmyhill.co.uk/article.cfm?id=373

It was Chinese when I first read it months ago, but having researched so much stuff lately, now I get it. I completely get it.

I think the CoQ10 has had a noticable effect on my energy levels. I can't be totally sure because wearing glasses has helped with my general wellbeing and so has the weather, and so I may just be feeling up to more, if you get me. But one thing is for sure - I certainly have energy now, when before taking CoQ10, I didn't.

Dr Myhill also suggests the following:

Co-enzyme Q 10 300 - 360mg (the oil of the engine, this moves electrons from one molecule to another)

Magnesium 400 - 800mg (the spark plugs, this fires up many enzyme reactions)

The D-ribose I can't seem to get on-line, but I've just ordered L-carnitine. The other two I already have.

The article makes so much sense to me. It doesn't seem to matter how well I eat, how much I cut out sugar, fats, caffeine, I just don't have anywhere near the health and energy of a person of my age. If the problem is with the mitochodria, good food isn't enough.

I have also ordered new wonder drug supplement Inflamol.

http://www.healthydirect.co.uk/0444.htm

Spivvy sounding name agreed, but with the recent booklet HealthyDirect sent to me they did a full article on it and I was impressed with the science and the research behind it.

I'm also very excited about the "loosens tight back muscles" and "reduces neck stiffness" claims - two of my gremlins!

All of this costs a lot of money of course. I had a chq from the tax people paying me back some money I was owed. I'd rather spend it this than a handbag.

Blood taken for liver checks at the hospital Monday. Hurt. Bruise on arm. May or may not have anything to do with the fact that when I answered the telephone at home later, I somehow managed to pull my shoulder muscle. Shoulder is now frozen.

Today. Two viles of blood taken, one for thyroid and one for "various" (nurse was so goddam vague). First vein didn't work, meaning I got pinned three times instead of two. Blood everywhere. Hurt. Huge bruises now on both arms. May or may not have anything to do with the fact that now my lower neck (just in between shoulders) hurts like someone's jammed a knife in it.

I shouldn't still wonder at my own body's ability to overreact to things, but I do.

No blood tests tomorrow! Yippeeeee!

Alright, so I'm wise-cracking in the previous post. Actually the doc I saw today, one of my gyno's team, not Mr A himself, was pretty cool actually. He actually listened to me and we actually had a two-way discussion - even if some of the stuff he said almost had me laughing by the end of the consultation.

He seemed pretty hot on trying to get me pregnant. A fair portion of our discussion was me trying to fend off being sent to the fertilty clinic. I tried to explain the long lasting and serious side-effects I had experienced from Prostap and tried to lead him down that road, but he wouldn't go with me. I also tried to explain that I've just gone through four miserable years of ill health, operations, nasty drugs, and hospital visits and that for my mental as well as physical health I wasn't sure if going through the full-on soul-wrenching slog of IVF was for me. If all the fertility clinic can offer me is more drugs like Prostap, I said, I just don't see that it is for me.

It is then that he told me that pregnancy was a cure for endo, and that's why IVF would so right for me. A baby and cured of endo - Bingo! Two great things for the price of one. Sadly, I know that it does not work that way.

A thought occurs that most of the women he tries this on with must jump at the chance to go onto IVF. Well they musn't have read what I've read. IVF is tough, mentally and physically, with no guarentee of success, and no long term studies done on the drugs used - some of which there is a whisper of a connection to (amongst other things) ovarian cancer.

I managed to get him off the subject of a referral by asking him to imagine a hypothetical situation in which I didn't want kids. How, then I asked, does my endo look? We went through the whole cyst issue, which is not so big and has calcium desposits around it (fancy!) and so may be fairly long standing, and the adhesions I have, and he said he didn't think that surgery would help, especially as The Pill seems to be keeping symptoms under control. I then happened to mention my concerns over the endo type pain that has come back over the last six months, the pulling senstions, the burning areas, the sharp shooting pains down my pelvic area, and also chanced to mention that sex had now become painful again, when it had been fine once I had healed form the op two years ago.

This information, that I just chanced to mention, turned him into a tail spin. He was off his chair before the you say adenoma and was knocking on the room next door to speak to Mr A himself. Good job I had a good book, because he was gone for a while.

When he came back he said that he and Mr A had been "brainstorming" and that given the symptoms I describe it was best I had a laparoscopy. Feeling now like I had almost talked him into this, and how I should have kept my big mouth shut, I panicked and started to back track going back to his original suggestion that I have another ultrasound to see how the cyst was getting along.

Too late. My fate was sealed. It was as if I said some magic word and Puff! The gates behind me had shut. It's not what I want, but I do believe it is what I need.

So, an op. And not just an op. I've also got to have my bowel "prepped" necesating a stay in hospital the night before the op. This is because of the did-they-didn't-they cut my bowel during the last op. He's also booking me a bed for the night after the op just in case there are the same probelsm as last time, although he assured me there was no reason it shouldn't go as planned. Though they said that last time.

I've also had a blood test to check my liver. Doc was very concerned that I had been on the pill continuously for 7 months and said that long term use of The Pill could effect the liver. One point to the doc. That I didn't know. And I've been on The Pill for 13 years.

Hello and welcome to today's edition of "Test The Doctor", where we ask doctors basic question in their specialist feild to ascertain if they know anything what-so-ever about the conditions of the patients who rely upon their 'specialist' care. Our contestant today is Mr X of the gyno unit of X Hospital, and his specialist subject is endometriosis.

Q1. Is pregnancy a cure for endometriosis?

Dr. Yes.

A. No, Mr X. Pregnancy is not a cure for endometriosis, it merely temporarily suspends the hormonal conditions in which endometriosis thrives. There is no cure for endometriosis.

Q2. How many periods is it necessary for a woman to have every year?

Dr. Three?

A. No, Mr X. The latest research shows that it is not necessary for a woman to have any period at all, and there has never been any evidence to suggest that it is harmful for a woman not to have any periods.

Q3. For how many months can Prostap be taken continuously?

Dr. Twelve months.

A. No, Mr X. Prostap is only licensed to be taken for six months.

Q4. Should you ask a patient what symptoms they have that have concerned them enough to seek medical treatment?

Dr. No. You should just make assumptions based on ultrasounds and other tests.

A. No, Mrs S. You should ask a patient what physical symptoms they are experiencing and join that together with information from other sources.

Well, that's the end of the round Mr S, and I'm sorry to say that you appear to have no knowledge of endometriosis, its symptoms or treatments, well done!

Music starts up. Lights down.

It's finally my gyno appointment tomorrow, when hopefully I get to find out if I'm going to have an op or not. How long have I waited? Is it about four months since the ultrasound discovered the cyst?

What's the betting that random doctor I see will ask me what I want to do? Like how the hell should I know?

It's obviously been playing on my mind. Last night I dreamt about it, though I can't remember much of the dream, only that the central question as to what happens next went begging. I remember another dream though where I was trying to speak to dad and mom kept coming in the room, so I said to dad "why does she have to be centre of attention all the time?"

I feel slightly oppressed tonight. Nothing to do but get through the hours until another medic can try and get me out of the door as quickly as possible. I used to just give myself up into the hope of doctors, thinking that they would find out all the answers. Now every appointment feels like a battle that I usually lose. I realise that none of them, in the eight minutes allotted time that they get to speak to me, really care about making me well. They are just doing their jobs. That would be alright if they did their jobs properly.

I hope I sleep tonight.

I'm a really crap friend.

Friend one. Too busy to answer my e-mails, even ones where I tell her about my diagnosis. Decide not to send anymore e-mails. She sends me two, the first all about herself, the second asking after me obviously noticing she's had a percieved lack of e-mails from me to ignore. Take days, but finally e-mail back very brief and friendly e-mail managing to say absolutely nothing in twenty words. How shitty am I?

Friend two. Too busy to answer my e-mails, even ones where I tell her about my diagnosis. But she has the grace to feel bad about it. Go out for a bite to eat and a chat a couple of times. Soon another e-mail goes completely unsanswered. Then sends request (to me and a thousand others) asking for sponsorship on something. I'm broke. I'm not feeling well. Leave it for a bit. Just go to sponsor and find out she did the race a week ago. How shitty do I feel?

Friend three. Starts a fight with a colleague. I encourage becasue I think he's mostly in the right. Fight escalates. I go quiet and feel bad about myself. So I reiterate my support because I feel bad that I encouraged him and then abandoned him. This support earns me slapped wrist from random person with superiority complex. Say to friend I think I should not have encouraged you, then friend feels let down because I was only one on his side. Can't do right for doing wrong. How shit does this make me feel?

Friend four. She's ill and might need an op. Her relentless cheeryness and positive attitude really grate on me. I'm thinking that if she didn't keep deluding herself that everything in the garden was rosy all the time, that she might actually face up to the the fact that her lifestyle was doing her much harm. But I say nothing. I stay silent. And she keeps getting ill. What a shit friend am I?

Why aren't I doing better than this?

Spent most of Friday "stuck". Utterly wretched. Tried very hard to keep warm, but short of wearing gloves and a baraclava it couldn't be done. Ended up snuggling under duvet - shivering! Couldn't sleep that night. Too hot. Go figure! Slept in next morn until 12 noon.

Saturday, much better. Kept active all day. The minute I started to feel cold or mentally tired, I got up and did something about the house. It was much warmer yesterday so that was much easier. The temperature makes such a difference.

Today I feel great, apart from a bit irritable. I put that down to being really sensitive to noise as usual. I went to B&Q to get some stuff for a little DIY project I'm working on and even other people's conversations grated on me.

As long as I keep moving the fibro pain is almost non-existent, just my shoulders hurt because my muscles are so weak it's always an effort to keep them upright!

I think the CoQ10 is actually making a difference. 120mg a day and I have oodles of energy! Yes you did read that right! I have oodles of energy! Now, I'm wondering, can I get my fitness back?

Last night I remembered that it is not unusual for me to go through spells where the physical pain recedes, but the cognitive problems grow.

The last week I've had big cognitive problems. Can't concentrate for very long, and just the idea of doing some simple task feels overwhelming and exhausting. I've had my periods of being "stuck" again and I can't read and find writing exhausting. I tried writing a difficult e-mail to a friend yesterday and couldn't get any kind of "sense" of what I was writing. It was flat, I felt flat. I just didn't want to do it, and completing it seemed as impossible as me completing a ten page essay on applicable rocket science. In the end I gave up. I feel much brighter today though, so I might give the e-mail another go.

This is me on my sliding scale between fibromyalgia and CFS.

So, no pain, huh?

Yesterday I had some sort of hayfever attack (ongoing today too), where the usual patch of skin high up in my left nostril is feeling mightily irritated. It hurts, itches, stings, swells, bleeds and makes my nose a constant running stream. No anti-histamine or nose spray touches it.

This has happening to me since I was about thirteen years old, and though it is really painful, depressing and thoroughly inconvenient, I know that it is temporary and just must be got through.

But! I kept sneezing so hard and so many times, that I appear to have put my back out!

Stop laughing, it's not funny!

I was doing the ironing (managed about half), sneezed, and felt a twang. I tried to carry on, but the spasms were too much. Then my back got stiff and I couldn't straighten up. Then I was sneezing more and more and that made it worse.

I ended up in the bath with a cold pack waiting for me on the outside. But some man decided that then was the very moment to work on my next door nieghbour's bathroom window, which is opposite ours. Because it was daytime, I didn't have the window blind down. For a minute or two there was just one piece of frosted glass between me and some random workman.

He didn't see me, and when he went down the ladder I pulled the blind down. But then I was sitting in the bath in semi-darkness, and as the window was open I could hear men not far below me talking away. Then they started banging in the alleyway, I don't know at what, but it was so hard I could see the shudder of a vibration rippled my bath water.

So I got out the bath, and realised that I now had a thumping headache to boot.

I got dresed and lay on the bed ice-pack under my back, still sneezing, head throbbing, and thinking, hmmmm, I wonder what I'll write about in my next blog post.

Today, my back is incredibly stiff, though not painful, when I got up I found the next door neighbour's dog running around my back garden pissing his male dog piss on everything, and I've just been downstairs to investigate a disturbance and I think one of my cats has brought some creature into the house to play with which has managed to find sactuary under the living room telly.

Hil.ar.ious.

Not last night but the night before I suddenly realised something. My neck didn't hurt.

For weeks and weeks now my neck has been the bain of my life. It ached constantly. Each of the individual neck bones going from shoulder to head hurt to touch.

It's been an endless slog of hot and cold packs, stretching exercises, the exercises the physio showed me, painkillers and anti-flammatorys, and massages by hubby. All of which in turn made slight differences, but nothing made it go away.

And now, suddenly, it's just gone. It doesn't hurt to touch my neck bones, which is truly freaking me out, and it doesn't hurt at night in bed. It feels so completely weird that NOT having pain is keeping me awake.

Usually, when a pain leaves me it just turns up somewhere else. But I've waited two days now and the pain hasn't reappeared anywhere. Apart from a little stiffness, much down on normal recordings, the fibromyalgia side of things has dribbled to almost nothing. Even my womb, which feels sore and swollen, feels better when I take painkillers. Yes, painkillers actually I work. I take them. And the pain goes for a while. It's been a long time since painkillers worked like that anywhere on me.

And so for the first time in at least two years, we could probably say four years with one thing and another, I am virtually pain free

I've been thinking of reasons for this craziness, and this is what I've come up with. In no particular order:

A week cutting out sugar and caffiene. Though I've done this lots of times before and it didn't affect how much pain I was in.

Hiking the 5HTP up to 300mg a day. A good bet.

My spotting means that there has been a shift in my hormones and that this has somehow affected my ability to feel pain. Fair chance.

Stopping taking the Diclofenac because I ran out at the weekend and haven't started taking the ones I got on Monday. Odd, but you never know.

The warmer weather, whilst making me ache, is actually doing me some good. Who knows?

Anyways, it's a pity I feel so mentally and physically weak. I'm not feeling the endo sleepiness anymore, but I don't have much energy to do stuff, so in between bits of housework I'm just resting and watching DVDs. There's a pile of ironing to do, but just the idea of standing there and doing it makes me feel like lying down.

Just for the record I e-mailed Colin on Monday. Told him that for the time being I was as well as I think I am going to be and that we might as well go for it. I told him I think I fancy working with B council to get me back to work.

A few e-mails later and it's all set. He gives B council some brief details and then they contact me and then off we go.

I feel quite excited!

Though I dreamt last night that I was asking after a part-time job in Dorothy Perkins, and guess who was running the shop? The same married couple who owned the cattery. After the bloke gave me the job, calling me a "great girl" and "wonderful", I suddenly realised that I couldn't work in a shop because of the music and the lights. And that I'd always hated the idea of working in a shop, thinking it beneath me. And I was all panicky as to how I was going to tell him after making him give me the job.

I think, dear reader, that is what you would call an anxiety dream.

I'm spotting almost like a proper period.

It might be why my symptoms have been so crazy lately, because pre and during my period (when I had them) I always used to feel a bit fuzzy headed and water-logged, and this is that but 30 times more.

My bladder is sore and my left ovary (presuming it's the ovary) is throbbing, occasionally giving me a wave of acute pain.

Not seeing the gyno until end of this month.

Why are doctors so thick?

She admited she didn't know enough about Prostap to decide what to do next (fob me off) and so I've got to go back in three weeks time, to give her time to look it up.

Fair enough.

She's referring me to ENT (the optician did send a letter, hurrah!) and I'm to have a blood test to check my thyroid (although what she's actually checking, she declined to say).

Fair enough.

But apperently the brain pain I get that's been well documented here is a...... wait for it...... a tension headache. I suggested that tension headaches tend to give pain on top of the skull, not below it. She said that that's the pain I have. I said, no it's not, it's UNDER the skull and then I mentioned that demyelination can occur after Prostap. She said it sounded unlikey. After that I thought best not to mention intracranial pressure which, by this point, would probably have made her burst out laughing.

And the tinnitus. The reason, apparently, that it wakes me up at night, is because I can hear it most in the quiet. And the fuzzy head and blurred vision that comes with it? She mumbles something about keeping background noise going like a TV or radio, and I say I'm not so bothered about having tinnitus as that it might be a symptom of something. Oh, right. Durrr!

Oh, and now she's recommending a CFS clinic! One would have thought that would have been a good idea last time I saw her, which was after my diagnosis, better than just bundling me out of the room with no help in sight anyway. But now I know all about CFS clinics and not on your nelly matey!

I picked up right from the time my physio suggested ME that she wasn't keen. She wrinkled her nose up once at a suggestion of fibromyalgia. And now with her lack of enthusiasm over the hormone testing and her suggestion of the CFS clinic, I'm thinking, I know you lady, you think all of this is in my head.

I'll got back to her after the thyroid testing and see what she has to say, but I might ask her outright what she thinks causes CFS. If she admits a leaning towards psychosomatic disorder I think I'm going to tell her I think I should see another doctor.

Felt quite bad yesterday. Had to concentrate really hard on what to do. Not think too far ahead. Did what I shouldn't have done and carried on regardless. Had to get a Father's Day pressie and do some food shopping. Supermarkets kill me. All that light, noise, people. I'm really sensitive to sound at the moment, I need complete quiet, not even able to have the TV on during the day, and my local Asda plays Asda FM at top notch.

Had to give Hubby lift to and from his Friday night hobby too, and by the time I got into bed 12.30 at night I was in a bad way. Shaking, feverish, hallucinating. Eyeball headache came back too and tinitus so noisy I thought my head might explode.

About 9.30am this morning I dragged myself out of bed because I felt desperate for a wee (what? don't read this if you don't want details ), but when I went to the loo there was hardly any pee (you still reading this? )

Went downstairs to feed the cats who had gathered at my feet. I was so unsteady on my feet. Felt like the mother of all hangovers.

I went back to bed. My head felt so heavy, it felt like there was a water-logged leather football sitting in my skull. My vision was very blurred. tinnitus very bad.

I decided to sit up in bed, because my head often gets better if it's given a chance to "drain", and so propped myself up on some pillows. I was so weak I didn't even have the energy to cry.

Next thing I knew Hubby was trying to wake me up and it was about 1.30pm.

Took me an hour to get up.

I got up. Had some lunch. watched some football. felt so weak I couldn't sit up in the chair. So I went and lay on the bed for the rest of the afternoon.

I've just had tea and watched some telly, and I'm feeling better now. A bit weak, but not quite so ill. And my head has mostly cleared.

I think it's the hot weather.

Daily:

300mg 5HTP
120mg CoQ10
500mg Evening Primrose Oil
Omega 3-6-9
Milk Thistle

I gave the others up. It got too expensive and too difficult taking so many tablets a day, especially as I also take 3 Diclofenic with paracetamol. And now I'm taking an anti-histamine for my hayfever too.

I was re-ordering my 5HTP and CoQ10 this morning from the usual website and I re-read this:

"Other key functions of CoQ10 include the maintenance of proper heart function through regulating or eliminating arrhythmias, keeping blood pressure within safer levels, protecting against angina pectoris and helping stave off fatigue."

Remember what I said a few posts ago about not being able to feel my heartbeat anymore? I'd completely forgotten this about CoQ10.

The "arrhythmia" has come back a little, but I'm having a stormy week healthwise. Not feeling very well at all, although I am decidedly better today having slept the night through.

I'm spotting today too. That might be why I've been very sleepy lately. Just a pity I can't sleep too well.

I've been having a clear out. Not that there is that much to clear out, because I've been periodically cleaning out since I left work (gulp) one and a half years ago. But we had to throw some kitchen stuff out because of a mouse infestation (would you toast in a toaster a mouse had ben eating from? Oddly, me neither) and also Hubby cleaned out the outside loo a week of two ago because we had a leak. It was packed with miscellaneous bags of rubbish and a large ugly table my brother had given us, so between that and the kitchen stuff, the garden needed a clear out.

Just to be sure I've also gone through drawers, in cupboards, and under the bed. Not much to find except a guilty stash of clothes and shoes that I bought from cheap shops and that when I got them home found didn't fit and then rather than taking them back I just hid. I suspect all clothes and shoe shops make a fortune from unworn clothes hidden in dark places. Anyways, I also came across a short story I had guilty hidden away too.

Oh yes. I used to write. Not just blog writing, but short stories and actual books of fiction. No damn fucker ever published me though. Then I discovered blogging and I stopped.

I hadn't read this story of mine in yonks so I sat on the floor, next to the guilty pile of clothing, and I read it. It surprised me actually how good it was. Every single line filled with a sort of vibrating energy, nothing bland or cliched. Funny too. Made me laugh out loud twice. But also sad. The story is about a woman and her infertility and there's a lot of personal feeling there. Left me feeling a bit strange. Like I'd come across a time capsule containing my exact thoughts and feelings from a couple of years ago. I was was just pulling out of my grief about not being able to have children and it's all there, in that little story.

Just before I chucked the story in the binliner half-full of collective drawer rubbish, I noticed another piece of paper with it. It was the rejection letter from the magazine I had sent it to. That's why the story was stashed under the bed like a guilty secret. Not because I was ashamed of the story, but because that rejection letter made me really angry.

You see, it doesn't criticise my writing, it criticises the character in the story. And as so much of my own personal feeling had gone into the story, that really hurt. Rejection Woman (for it was a woman) says "I felt she could have been more sympathetically portrayed" and "she came across as rather sour" and "I would have liked to have seen more vulnerability".

Yes, because us infertile women must be sympathetic characters musn't we? We are not allowed to be disagreeable people, but must accept our fate with grace and dignity. We must be vulnerable. We must seek and accept victimhood. Everyone must feel very sorry for us, so we must in no way comprimise that inclination to pity us.

The woman is the story is angry. A woman from the office has brought her new baby back into work whilst she's on maternity leave, and she is trying to avoid her because she cannot face seeing new borns. I've read it through twice and I don't see sour. I see anger. Ultimately she does come into contact with the new born and the mother, but to her surprise she finds the sight of a baby no longer makes her upset. She finds that she feels no jealousy towards the mother. She finds that she can walk away and think of other things.

She finds, in fact, that infertility is no longer the ruling issue in her life, and that she has other things in life of great value.

This is another no no for infertile woman. The idea that any woman could, well, sort of Get Over It. It's offensive somehow. It's not how we like to think of infertile women. It's not how we like to think of women. Women must want children and if they cannot have them it must destroy their lives. How can we feel sympathy for them otherwise.

If I didn't have endometriosis I would have at least two children by now. If things had really gone according to plan the first child would be about five years old. Coming to terms with the endometriosis and all that endometriosis brings with it has been a hard long journey. For five years its been hospital appointments, and operations, and drugs, and pain, and late night trips to A&E, not to mention the loss of two jobs and all the money I once had. And now, after knowing what Prostap has done to me, I know I cannot afford to go near any infertility drugs.

And so what choice do I have? Do I decide my life is not worth living? Do I let my infertility turn me into some kind of saintly object of pity who weeps and regrets for the rest of her life?

No, sorry. I only have one life. I've already wasted enough of it being ill and in pain. I don't want to waste any more of it yearning for something I can't have.

One day, if we get this house straight, and if I get another job and keep well enough to hang onto it, Hubby and I might look seriously into adoption. There is still a big part of us that wants a family. Wants to do things like 'take the kids on holiday' and spend sunny Sunday afternoons down the park kicking a ball about. We have a lot of love between us, Hubby and I, and how lovely would it be to share that with kids who had a bad start in life?

But I cannot think of that right now. I'm still trying to put my life back together and there's a lot of unfinished business around this place. I have to take it one step at a time, and whilst I'm doing that I want to be happy, not living in sadness and grief.

So I'm going to throw that nasty and very stupid 'rejection' letter away with the story. The story I have on disc, the letter will be gone forever.

Two nights in a row now. Early waking. Monday not too bad, but last night, 4.30am, wide awake, brainache like hell, tinnitus so loud I could hardly hear. Have anxiety attack. Convinced I have brain damage.

Porridge. Warm drink and 100mg of 5HTP. Computer (yes I know, really bad idea, but my mind was racing and it's the only thing that calms me down). Back to bed 6am. Brainache and tinnitus as bad as before. Toss and turn for two hours. Hubby gets up to go to work and I finally fall asleep.

Wake up 12 noon feeling absolutely wretched.

Upping my dose of 5HTP from 200mg a day to 300mg.

Prof Malcolm Hooper
The Terminology of ME CFS

http://www.satori-5.co.uk/word_articles/me_cfs/terminology_of_me.html

The One Click Group

http://www.theoneclickgroup.co.uk/news.php?start=260&end=280&view=yes&id=301

Assoc of young people with ME

http://www.ayme.org.uk/article.php?sid=15

Vade MEcum
http://www.meactionuk.org.uk/Vade_MEcum.htm

It was a slow weekend. We had nothing planned, so we just pleased ourselves. Of course for me that also means having to cook, wash-up and do some housework, but hey, Hubby works all week, why not.

I noticed I was finding it hard to do things. Having to really put my mind to anything that I did. I put it down to the heat, which I am loving, and the fact that fibro pain is back big time, which I am not loving. I am so stiff all over it's a wonder I've got any flexibility at all.

Anyway, I wasn't up to much. Then. Sunday night I sat down to watch a bit of telly and was stuck in the chair for about five hours. Not because the telly was great, and not because of any physical impediment, but because I just couldn't... well... couldn't make myself move. My eyes started to hurt, because I wasn't wearing my glasses, but I couldn't seem to make myself move to go and get them. I couldn't seem to make myself shout up to Hubby either. I couldn't make any kind of decision on what to do at all in fact.

And so I just sat there, hoping hubby would come down and check on me which he never did, eyes hurting, back and neck getting stiffer and stiffer (because I can't usually sit for very long), switching madly between five channels because I couldn't concentrate long enough on anything and everything seemed rubbish.

Make no mistake. I was not tired. I wasn't feeling lazy. I wasn't physically paralysed. I just couldn't make the connection that is necessary between thought and movement to get up off the chair.

Eventually I made it upstairs, not sure, sometime after midnight, after one o'clock maybe.

The next day I woke up with very blurry eyes, a very fuzzy head, and very loud tinnitus. And I was very weak. I came on the computer to look some stuff up, but I think I did one post here and thought "I'm not well enough for this". I then spent the rest of the day persuading myself to do things. This involves sitting somewhere thinking about say, putting the kettle on, and thinking about it, and thinking about it, and thinking about it, and finally after an hour and a half actually getting to do it.

To regular readers, you will recognise this as me being "stuck". It was a fairly frequent occurance last summer, but I don't think I've had it for a while.

It's like I have to trick my body into following my mind's instructions. Normal activity is to think "I'll put the kettle on" and then go and put the kettle on. When I get stuck I think "I'll put the kettle on" - but that one single thought is too overwhelming..... so I have to break it down. First think about the first move, say standing up, which is the hardest part and takes the longest time. Then it's persuade myself to go into the kitchen. Not think about anything else. Just think about the kitchen. Then when I'm in the kitchen, think about what I would have to do to fill the kettle up with water. Then when the kettle's filled with water... you get the picture. It's hard work.

Yesterday I was also incredibly sensitive to light in a way I haven't been for many months. I had to keep the curtains closed all over the house. Sound was ubearable. I could only stand to have the TV on late afternoon.

I did get a bit upset about it yesterday. It's very easy to get frightened when you're in the house on your own and that comes over you. It was one of the more disabilitating symptoms of last year and I thought I was rid of it. Obviously not.

As I had it last summer, and I'm just getting it now, it might be a reaction to the heat, but I can't be sure.

The other night I couldn't sleep again. 5am and there I was still awake. I couldn't figure it out. I'd had a usual day, no afternoon naps, 200mg 5HTP, I'd eaten no sugar, had a light supper. When I'd gone to bed I was really sleepy. Even the usual milk and banana didn't do anything for me.

Finally I took a shower. And you know what? I found I was boiling over. I had to have the shower on semi-cold. Every part of me was red hot and I had to stand under the water for a long time to feel finally cool!

I think I have spent so much time fending off being cold that I'd forgotten actually what it was to feel too hot! Added to that that I wasn't sweating and that's why I couldn't figure out why I couldn't sleep.

Last night I had a cold shower before bed and fell asleep like a baby. I only woke at 7.30am this morning because of the thunder storm and that cat meowing at the bedroom door.

medical miricle turns nightmare
Boston Herald 1999

http://www.genetics-and-society.org/resources/items/19990822_herald_lazar.html

I had a big relapse of fluey symptoms Friday afternoon, brought on I think by a trip to the supermarket. I took a couple of hours out in the afternoon for a bit of bed rest, not something I would normally do, but I had a lot of driving to do that night and thought it better to sacrifice the afternoon to it. As it happened it worked. That evening I was fine as was I the next day, and even yesterday (Sunday). Although physically I felt very weak all day, I didn't feel so ill.

I think this warmer weather really helps. It doesn't much help with the stiffness and joint pain (muscles and bones so sore today - all that driving I think), but it does help with the general feeling of malaise.

I've really got to get my arse into gear with preparing my stuff for my GP. I want a dossier prepared that shows her the side-effects of Prostap and what side-effects I have been hit with, what I think the drug has done to me, and what I think we should do about it. Well, if I don't do that, no other fucker is going to.

Whether it was the cause of all the crying yesterday, or a consequence of it, I came down with a bad fever last night. Weak, shivering, feverish, sore throat, dry eyes, aching muscles. By 10pm I was in bed with a hot lemon and honey drink feeling very sorry for myself. We've got a lot on this weekend, including a night away tonight, and I was saying to Hubby "What if I'm not well enough?"

This morning I woke up early and felt fine. I was a little depressed yesterday and my immune system obviously took umbrage. Trying to look after myself today, just to keep a lid on things. Not that I had anything exciting to do anyway.

Hubby just rang me from work. Knowing I had been to my parents he asked, "How badly have they upset you this time?"

I started crying again.

It's been ten days since i've been taking these things (I've upped it to 120mg a day) and I've noticed a couple of things.

Firstly the other night I realised that I can hardly feel my heart beating anymore. Normally, when I am still and quiet the boom boom boom of my heart accompanies the hiss of the tinnitus. I could usually feel it beating uncomfortable in my chest. It also does this thing where it misses a beat and then does an extra big boom to make up for the lost one. The other night, my heart did this missed boom big boom thing, but after that..... silence. I actually panicked for a minute because I couldn't hear and feel my heart like I normally do and I wondered if it had stopped bloody beating!

Since then I have noticed that I can hardly hear and feel my heart anymore, but that it still appears to be beating, so all to the good!

The only other thing I've noticed is that I'm having trouble getting to sleep again. I had simply forgotten the misery of lying in bed exhausted and watching the hours tick away. Twice this week it's been a 4am stonker because my mind is just racing racing racing away.

Two nightmares too. One where I was a child again and my brother was bullying me like he always did, nasty pig that he was, and my family were stood around doing nothing about it just as they used to. The second nightmare Hubby was picking on me, and I was thinking "no, not you too, you can't turn out to be like THEM". Both times I woke up crying.

On the energy score? I am still ekeing out six hours, but I am still getting very ill every day. It's like being injected with a virus and my body just collapses.

Okay.

Earlier this week I popped up to my parents-in-law. I stopped for a good couple of hours during which time we had a chat about everything and generally had a good laugh. The only bad thing that happened was an abrupt and oh-so-not-obvious change of subject by mother-in-law when I tried to explain why I might be asking for a referal to ENT. Do. Not. Talk. About. My. Health. Lesson STILL not learnt, slapped hand. Anyway, I came away from them really buzzed up about various things and was really glad I went over.

Wind forward to today. Spent the afternoon with my own parents. I don't know how I'd managed it, but until this afternoon I'd forgotten just what a complete incompetant I am. I shouldn't have gone to university. Apparently. When I renovated the bathroom in my house, I did it wrong. And now I'm renovating the kitchen, I will do that wrong too. I am not capble of looking after a dog. I had to be told that dogs need walking. Obviously before this afternoon I didn't know that. My hair was wrong. It's funny, for some reason I have not yet picked-up on, that I wear the shoes I do. My news, and I have had some pretty exciting news recently to do with Professors and political movements, gained no reaction what-so-ever. Nothing. Nada.

Driving back home I cried. I always cry driving back home from my mom and dad's. That's why I'm so careful about when and how often I go. They so thoroughly depress me and I'm not always in the best of places emotionally of taking their endless stream of negativity.

I could take the criticism, unfounded as it is, much better if they responded well to the good stuff about me. But they don't. I simply am incapable of impressing them, or making them proud of me. What does it matter if some writer from the Guradian has contacted me, if I haven't yet started pulling kitchen shelves off the wall? My trip to London last week was only of note because mom had seen a program on the telly about houses in Islington, the part of London I went to. Otherwise she didn't give a fuck. Telly, telly, telly. That'sall they do all fucking day. Watch telly. I'm a failure at that too, because every program they ask if I've watched, I haven't. But they ramble on about it anway. Yes, so much more exciting, so much more interesting what happens on the telly than what happens in your own daughter's life.

I did at least, probably for the first time in my life, argue with my dad. He snapped at me about some perceived errant decision of mine from the past, and I shot him down on it. He was wrong. Normally I would sit there, cheeks smarting, feelings hurt, but today I put him right. It's taken me 33 years, but I have finally learnt how to stand up to my own dad.