Endometriosis and Me

Earlier this week I bought a decent wool-mix suit from Zara, two shirts from H&M, and new shoes from New Look. It is the first proper shopping trip for clothes I have been able to indulge in in two years. I need these things for my new job. I still have my old clothes that I used to wear to my old job, but trying them on they felt cheap and stale and I am too fat for them now.

Today I bought a pair of warm, fully lined curtains for the bedroom, draft excluding things for doors, and that cling-film stuff for the windows.

We're going to have the loft better insulated too. I am determined to keep the house as warm as possible this winter. Getting cold makes me so ill. A drop in temperature took me surprise yesterday and I let the cold get to me before I realised that I needed to dress up warmer than i had been doing. My body and mind just shut down and I couldn't even think what to do to get warm. I recover slowly, even when warmed up I'm still confused and suffering from that odd sort of out-of-body pain that cold brings.

All these things I both need to do and can do because I've found work. Funny, when you're off work ill you have all the time in the world to do things, but no money with which to do them. But when you're well enough to work you have the money but no time. Funny. Funny. Funny.

I started going swimming. Every other day for twenty minutes to half an hour. I haven't been able to exercise in over a year; it always made me so ill. This time exercise made me feel the blood pumping around my body taking oxygen to every cell. it felt bloody fantastic, though it also made me a little tired. But naturally tired. Not CFS tired. Haven't felt that in a looong time.

I hoped it would help fix my neck and shoulder. It hasn't. And the pain is back with avengence. It feels like someone has interwoven steal string into my muscles. So sore. So stiff. Wrenching all my soft tissue muscle in the local area.

I e-mailed a practictioner of the Bowen technique, and got no response. I found that my local beauty parlor, sometimes frequented when I was earning before, do deep tissue massages. This was the only thing that ever gave me relief from this pain, though it doesn't ever fix it. For the sake of starting work a week today, I'm giving it a go next week and might do a few sessions. I'd like to see a Trigger Point specialist, but there are none in my area.

I've had a busy week or so, and today my body finally complained. Aching, clicking, stiff and sore. I just took a long soak in the bath and feel much easier. I will take extra Inflamol and magnesium before I go to bed tonight.

This morning I woke up with that painful buzzing head/ringing ears/blurred vision thing again. Felt like my head was full of cotton wool. Sound was muffled. My own voice when I spoke vibrated in my head. I was on the computer late last night. It sets me off as bad as sugar. Wonder why?

But this is the worst I can say about how I feel physically at the moment. The worst. And it's not bad, is it?

One week on from the interview and I finally got the call. I was restless all day, couldn't settle to anything and was fed-up of not knowing and having to worry about it. I was sitting by the phone upstairs, putting a pin to a nasty spot that's come up on my chin. The phone had already rung once, for three rings, but I hadn't got to the phone in time. 1471 told me that the caller had withheld their number. The phone rang again about ten minutes later and it was the PA. She asked me how I was. She didn't sound happy. I thought it was bad news. It wasn't. I got the job. I start two weeks tomorrow.

I had a job interview last week for that really interesting job I mentioned before.

I think the interview went fine, but I was a bit crap on a couple of questions. I'm fairly sure I gave a good impression of myself though and I think I did the tests well. I can't have been all bad because my possible future boss is taking up my references already, so I know I am short-listed at least.

Just waiting to hear now. I guess if I get the job it will be a phonecall, and if I don't it will be a letter. Keep your fingers crossed for me anyway.

It seemed like it might be a pleaseant place to work. A small but bright office, and everyone I met (and there were three on the interview panel) was smiley and welcoming.

In marked contrast to the awful interview I had last year for some charity. Had to traval all the way down to SW1, the building looked fine from the outside but was grotty inside, the office was large but packed out with boxes and files and awkwardly placed desks, and the people I met were very unfriendly. One of the two women who interviewed me just kept staring at me with her beady eyes, as if I had done something very wrong. I did an awful interview. I was tired from the travelling, only a few days after having an op on my eye, and so wound up about it all (I had spent days and days studying the charity and its work and was terrified I'd forget it all - in the end none of my newly gained knowledge was needed for the boring questions they asked and so I tried to get the info in with the questions they did ask. Bit of a mess)

I didn't expect to get that job. And lo! I didn't. My only hope would have been if everyone else was even more awful and they weren't fussy.

(Bad on them for having offices in SW1 anyway. Shouldn't a nationwide charity be saving money by having offices somehwere cheaper? And why drag all candidtates down there to be interviewed? It would have saved on all those travelling expenses they had to pay us all, just to hire a hotel room and do them up here)

Then, of course, there was the interview for the cattery job. Mr Cattery was so nice to me, always so nice to me. I still feel bad for walking out on him like that. I talked him into giving me a chance, and he gave me a chance and I really let him down.

I sometimes think of writing to him and fully explaining what my circumstances were at that time. I can clearly see now that the pain and anxiety that overwhelmed me then was a consequence of being on Prostap.

But there was as much wrong with that job as right. Working on my own with the cats, part-time, radio on, no computers, no phones, no office meetings and Team Briefs was lovely. But the older part of the cattery was oppressive for both me and the cats. I hated to see them in their little wooden hutches. It wasn't safe either. Cats could easily escape and be lost into the rafters and so nerves were always on edge. And I was told always to look out for poos, but some of the cats wouldn't come out of the hutch onto the floor and would attack you if you tried to move them or check the hutch. Some were truly vicious with me, not helped by the stress of feeling so hemmed in, in their little dark cages.

And then there were the other workers. Hard workers, but little in the way of social skills. Unwelcoming, sometimes down right rude. They would often stop talking when I walked into the little hut that served as washing-up and tea room. I was never invited on tea breaks or on their nights out. I don't know whether it was jealousy that I got to work with the cats (seen as easy compared to working with the dogs), and that I got to work part-time, or whether they just thought me "not like them". Perhaps I had too much of a manergerial manner about me to be amongst them slopping buckets of disinfectant around and scooping up poo and wee. Certainly I tried to keep true to myself and as myself its hard just to fade into the back-ground.

And OH GOD! The snitching. EVERYTHING reported to the boss without fail. I found out on my second day that the slightest percieved mistake was faithfully reported. Then along would come Mr Cattery, a jovial smile in that unusually fat, uneven and generally knobbly face of his, patting me on the back and talking to me in kindly sorrow about not having pulled a blind down, or wiped a smudge off some window.

I will never forget the humiliation of that. The sense of being such an open target for colleagues so willing to get me into trouble.

Blah! It was a horrible time in my life.

After the back-stabbing I had had in my previous office job it was everything to convince me that people and work were two horrible combinations and one could never be happy whilst one was made to be in such a toxic environment.

But I'm forgetting how my office job started. When I first joined the company after leaving uni I found a good band of co-workers. Two of the girls were best pals and aloof with me, but I don't remember letting it bother me. I got on too well with the others for it to be an issue. Friendly Mark, James and Matt, supportive Sarah, funny Dave. Even the boss, though later we had our issues, not someone I couldn't handle. The supervisor was the best. He would just piss off for hours and leave us to it. And because we were all good at our jobs we did just as well. We would even organise our own rosters and work out what overtime was needed amongst ourselves. The supervisor cried when I left the company, even though he hadn't managed me for a long time and we'd had our differences.

Makes me shake my head when i think about the people I worked with later. Organise their own roster? They could organise themselves to get in on time. They did half the work we had done for twice the pay. No wonder I often got frustrated with them.

Anyway. That job set me up for life. It got my house, my wedding, several trips abroad. It made me really, and I always feel grateful to being given that job when no other company even offered me an interview.

That's a bit how I feel now. That a need a break to get back into work. I've been off work for two years and I know that doesn't make me an attractive prospective employee. I think the people I had the interview with last week got that.

Perhaps I'll hear about it today.

I recently had a go at my Gran on this blog.

At the weekend she was around my parents. She was in a good mood and was really lovely to be around. She kept saying how nice it was to see everybody all together (my brothers and nephew were there too). She was a little bit funny with husband still, but at least she didn't call him fat this time.

I regret saying what I said about her, and I do love her really. She is my gran.

Since I fell ill, I have found that people fall over themselves to tell me how well I look.

I've often wandered why they do this.

Have decided there are three main reaosns.

One) They love me and want me to be well, so by saying that I look well, it makes it easier for them to believe I am actually well.

Two) They hate me and think me a fraud, and want me to know that they think me a fraud.

Three) They are lazy/busy, and don't want to have to acknowledge I am ill because that might make demands on their time.

And since coming out of hospital, no less than three people have not only told me how well i look, but how ill i looked before i went into hospital!

This drives me mad!

Because I didn't look ill before I went into hospital! Endometriosis makes your pelvis uncomfortable, it makes going to the loo and having sex painful, it makes wearing tight trousers a bad idea. But for me, whilst I've not been having periods, I've not been in significant pain, and it hasn't made me look ill!

I hate to pick on my mother-in-law (again), but this is a case in point. She comes around to see me at home after the op. Oddly, she never even asks about my hospital stay, or how the op went, or how I feel. It's like nothing has happened. So, anyway, I presume her son told her everything and that she's just respecting my privacy. Or something.

Then, just when she's about to leave, she tells me enthusiastically how great it is to see me looking well, and how ill I looked before the op!

Now, not to be horrible, but this is an out and out misrepresentation of the truth! I remember each and every occasion I saw her before the op, and I was positively glowing! The various oil supplememnts I'm taking are having a lovely affect on my hair, skin and eyes. I've looked very well for several months now!

And yet on this occasion, I looked like shite. My eyes were puffy and red from over-sleeping, my skin greasy and blotchy from lack of make-up and general care, my hair greasy from lack of being washed. I was grogged up on the drugs and generally felt sick and rough as hell.

I must admit, I couldn't hide my surprise when she pronounced how "well" I looked. I was like "do I? I feel like crap." and then because that seemed a bit rude, added "perhaps the opiates are doing me good."

Laughter all around.

But seriously, people. When dealing with someone who is battling illness never never never comment on how well, or otherwise, they look. It is irritating beyond belief. Because how people "look" is not always an indication of how "well" a person is, and even when it is, most people misinterpret and get it wrong. And anyway, it's rude. Ill people do not exist so that other people can publicly judge them and the level of their illness. If you want to know how we are, bloody ask, don't just make a guess!

Today I went into the city centre to get one or two cosmetic things that just don't seem to be available anywhere handier.

It was a hot day, but I hadn't realised it when I set out and wore a heavy jacket and shoes with socks. I sweltered. Especially on the bus. And ended up taking my jacket off and carrying it.

I felt heavy and exhausted the whole time I was out. No reason of course. I haven't done anthing that would warrant feeling heavy and exhausted.

I came back and had the sandwich to eat that I had bought in town and read the paper for an hour. Then I got up to go and clean the car, because it is in for its MOT tomorrow.

I noticed something was wrong with my right arm. I could hardly move it, and it was tender like it had been battered a few times with a plank. Odd, I thought.

I went upstairs to get the hoover for the car. By the time i got to the top of the stairs, I was sweating and out of breath. I sat on the bed and tried to get my breath. I felt weak and very, very tired.

I went for a wash to try and make myself feel a bit fresher. I noticed then that my whole face felt tender when I washed it too. Especially around my eyes. They felt like they'd had a light blow from a fist! really, really odd!

It was then i realised that I now felt sort of tender all over. I pressed my other arm, my legs, my belly. I felt sore and tender. Though my right arm was the worst - it was hardly usable. I put this down to having my jacket draped over it earlier in the day.

I went on and cleaned the car anyway, difficult with a gammy arm, and that really set things off. I went dizzy and my tinnitus was going crazy. I went and lay down on the bed, took some painkillers, and felt like I was coming down with the worst bout of flu I had ever experienced.

I managed to sleep for about half an hour.

When I woke up I felt groggy.

I ate the evening meal husband had bought from the foodhall in Selfridges - a treat for us both for the rough time we have had lately. I felt better, but weak.

I went to the loo. I realised I was spotting. That would explain the exhaustion and the general pain.

Now after watching telly and resting for the evening I feel much better. My right arm just aches a little.

But what is this? What is this constant cycle of rapid illness followed by rapid recovery? It is just so weird. When it's at its worst, I feel like I'm going to be ill for weeks, but as long as i rest instantly it goes away.

The real worry for me is that if this "thing" was to come on at work, I can't go and lie on my bed for three hours to get rid of it, so what will happen? How can I possible think of working full time when my body reacts so violently to someting as simple as carrying a coat?

I have been scouring the internet and papers for jobs to apply for. I have applied for less jobs than application forms received, and sent off for less application forms than I could have done.

Upshot. I have only applied for two jobs. This isn't a great seek-to-application conversion rate.

But the good news is (touch wood) that I've got an interview for the second job I applied for next week. I would have been gutted had I not got an interview, even though I was by no means sure I would get one, because it is a dream job. It's only covering for maternity leave, but that suits me fine, because it is also full time, and I have huge doubts about how well I can manage full time for any length of time.

But when I saw it in the paper, I couldn't not apply for it. And when I got invited for interview, I couldn't not accept. If i get the job, and I have no idea of my chances of that, then there is no conceivable chance that I will turn it down. I've been on a high since the phone call and am enjoying these days of just knwoing I've got as far as interview, and being able to fantasise about having the job in question. I am very excited. Although I know the pain of disapointment will be hardly bearable if it comes, for the timebeing I'm not letting that ruin it for me.

And remember the New deal thing I signed up to? And the people I met who were going to help me get a job? One of them being someone I had once turned down for interview? Well, she for one got slighty on my nerves. She phoned me up to ask me if I wanted to go on a three week "placement" with the royal mail doing some sorting room job. Well, no I don't. I see that as a kind of backward step and not a great signal to future employees that I feel myself capable of very much. Fortunately I didn't need to tell her that, I just told her I was recovering from an op and wasn't going anywhere for two weeks at least. (at the moment I can't fit into any pair of trousers because I'm so swollen - I am sincerely hoping that will change by next week's interview!)

I don't think she was that pleased I hadn't told her about the op. I had meant to e-mail her but trying to get rid of that god awful cold in time to have the op kept me away from the computer and so i never did.

Anyway, she said that a placement would be good for me because I could get a reference. Er, hello! I can get a reference from the company I worked for for six years, and worked for well. Thank you.

At the time I spoke to her I was still holding out for an interview for this job i've mentioned, so I didn't mention it to her. She's now on holiday for two weeks and so i don't have to ever mention it to her if it goes pair-shaped.

Actually, the other thing she did to annoy me was ask to see "copies" of the application forms I had filled in. It felt like my teacher asking for proof that I'd done some course work! Well she couldn't see "copies" of my application forms, one, because I had hardly filled any application forms in (didn't tell her that) and two, because I don't keep "copies". You fill these things out on paper. I do have some notes, but they are scribbled things only I can make sense of and that I keep in a folder and that I need to help me fill in other applications. I'm not going to send them off in the post to her.

Told her I'd consult her on future apps instead, and put it in such a way she couldn't argue.

I don't know yet when my interview will actually be, because they were going to be held on Thursday but "something has come up". I don't see this as a bad sign. Let's just say I can understand if my possible future boss is rather busy right now.

And on that cryptic note, I bid you goodnight.

Family have been great. I've had some lovely cards from all relatives, both birthday cards and Get Well Soon cards, with lovely heartfelt messages. Did me good. Mom and dad, as always, have been golden. Coming to see me before, during and after the hospital trip. I've spent some time being angry at my parents, and gave vent on this blog once or twice, but I'm kind of over it now. It's like I've had a black cloud following me and that black cloud kept raining on people around me. It was either people from my old job, or friends, or my poor mom.

But the cloud has lifted now. I feel friendly and happy towards all people again and can only conclude that the anxiety of the impending operation (I cried when they wheeled me in to have the anaesthetic) caused me stress which I then projected onto others.

Even my two hopeless old friends can't make rile me now. One of them ignored my e-mail about the impending op, bt was good enough to actually phone this week. Unfortunately I was alseep ad she hasn't phoned back. Nor responded to my latest e-mail to thank her for the call and say how I'm getting on, but that's J for you!

The other J textd me. Unfortunately on the wrong week. I e-mailed her the proper date and I got another text from her a couple of days after the op. I got an e-mail from her this week too, to say that she was sorry she hadn't been in touch (but she had???) but that she had family issues. I e-mailed her I was sorry to hear that, and offered myself to talk about it if she wanted to. I've not heard back.

I shake my head at them both, but find I'm not angry with them any more. They are who they are.

And besides, newer friends have textd and e-mailed and again have sent me some genuine heartfelt messages for my good health. I look forward to being well enough to see them all again. I am, indeed, a very lucky young woman.

Well, while I'm up late at night trying to cool down enough to get some sleep, I might as well update this old thing.

I had my op. Last week. It went very well. The endo was not half as rampant as in the op two years ago, and all that was needed was to drain the cyst and cut the adehsions that had developed all over the place from my front to my back, giving me a frozen pelvis. My left overy was stuck to my bowel too, and so that apparently accounts for the burning/dragging/shooting pains down my left side. My ovary has now been set free.

The surgeon was so pleased he said that he wasn't going to put me on the Prostap because I "wasn't bad enough". But he also said that I was not to be fooled by the three little neat cuts I had in my belly. He had still done a lot of work inside me and I had a lot of healing to do. I still class as endo stage IV, even though it was so much better. I think it made me fully realise how bad things were two years ago.

I was tense for the week leading up to the op. Hell, I've been tense about it all year. But I was tense enough a few days before to let rip at husband in the local High Street swearing like a fish-wife. he was doing his usual rabbit-staring-at-the-headlights gag over the whole impeding hospital stay, and he comes across as arrogant and uncaring. I know it's because he's scared, but instead of soft words of love and encouragement, I get frozen out and treated like an irritant. Both of us got over ourselves after my little show (which lasted most of the day), and by the time I went into the hosp, we were alright.

I was in hospital for four days. I ended up on a pleseant ward, and truth be told I could have stopped there a lot longer. I clicked with the women in the bed next to me, and we chatted away like old friends. I can't remember the last time I just felt so instantly comfortable with someone. We laughed alot together. I liked the fact that food was brought to me and then the plates taken away. All I had to do every day was just lie in bed and watch telly or listen to the radio.

The only reason I pushed to get out was that the ward bathroom was unclean. The shower was not cleaned for the three days I was there, despite the smear of blood that ran across its floor. You can only get so clean using a sink.

When I got out, first thing I did at home was put all my clothes in the washing machine and take a shower. Then I refused to take phone calls for two days, because I didn't want to have to do even so much as make conversation.

I fought off the cold right up until the hour of going into the hospital. My temperature was high all the while I was in there, only just starting to come down the last day. I was well for a couple of days, but yesterday I came down with the shivers again and went to bed feeling sure that THIS time I was coming down with flu. But no. As usual it went away with rest.

Today I have been fine. I was up and energetic most of the day, only having a slump in the afternoon, but I'd let myself get a bit cold and so that will be why. And then I warmed myself up too much, hence I can't sleep now. It seems my body is incapable of regulating its own temperature.

My belly is mostly pain free. Sometimes it aches a little, and it's a bit swollen, but not painful at all. I can even pee and poo with great ease. Marked contrast to last time.

Things are as good as I had hoped they would be.

I will stay on the pill and forgo periods for four to six months, and then I will come off them and see how I get on with having periods. I'll then give trying to get pregnant a go. I'm now 34, having had my birthday in hospital, and so the odds are not in my favour, but just the idea I can have another try at some point gives me peace of mind for now.