tag:endometriosisandme.blog.co.uk,2009-11-10:/How endometriosis punched a hole right through my life, and how I'm trying to patch it back up again. MokoFeed2009-11-10T19:07:48+01:00tag:endometriosisandme.blog.co.uk,2006-10-14:/2006/10/14/repairs~1222181/pastabake2006-10-14T22:42:43+02:002006-10-14T22:42:43+02:00 <p>I work with two women who are friendly, intelligent and have the best social skills. The boss is a hardworker, kind and very personable. The work itself is a shadow of stuff I have done before - I've picked it up really quickly and I'm not afraid of learning more. In fact, I've been seeking it all week. I can hardly believe myself. And I work helping people - that makes me feel very proud.</p> <p>Work sent me on a trip down to London and for the very first time I navigated train and tube on my own. When down there I swanned about like it was no big deal. I didn't suffer any nerves all day; just enjoyed myself. </p> <p>I am managing my health. I understand what makes me hurt and what makes me ill and I have done, and will continue to do, everything to minimise both. It's not easy, but I can do it if I put the effort in, and the rewards for doing it are worth it. </p> <p>I have noticed before that life can turn on a penny, and my life seems to have done exactly that. I can't bear to think much now of the pain I have gone through these last few years. But I feel a sense of pride that I never stopped trying to figure things out. Even when it felt like life was one big fist pummelling me down and down and down, I got back up again and carried on as best I could. I didn't see that at the time, I always felt such a failure, but I see it now looking back.</p> <p>And so, I'm feeling I should move on from this blog. In this blog I have tried to track my attempts to get my life back together after my developing endometriosis so spectacularly blew it apart. It feels now like much of the major repair work has been completed. Although there are projects remaining that will need some work, the worst part is over. </p> <p>Things are different. I have regrets and I carry much grief. I can however at least move my life forward now. That might be worth the starting of another blog. We'll see.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/10/14/repairs~1222181/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-29:/2006/09/29/shopping~1173321/pastabake2006-09-29T23:09:47+02:002006-10-14T22:47:49+02:00 <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/29/shopping~1173321/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-29:/2006/09/29/all_going_swimmingly~1173282/pastabake2006-09-29T22:58:16+02:002006-09-29T22:58:16+02:00 <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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?</p> <p>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?</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/29/all_going_swimmingly~1173282/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-21:/2006/09/21/news~1148657/pastabake2006-09-21T22:07:25+02:002006-09-21T22:07:25+02:00 <p>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. </p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/21/news~1148657/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-19:/2006/09/19/work~1140071/pastabake2006-09-19T11:42:11+02:002006-09-19T11:49:46+02:00 <p>I had a job interview last week for that really interesting job I mentioned before.</p> <p>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.</p> <p>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.</p> <p>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. </p> <p>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)</p> <p>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.</p> <p>(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)</p> <p>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. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>Blah! It was a horrible time in my life.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>Perhaps I'll hear about it today.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/19/work~1140071/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-19:/2006/09/19/gran~1139964/pastabake2006-09-19T10:59:45+02:002006-09-19T11:03:15+02:00 <p>I recently had a go at my Gran on this blog.</p> <p>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.</p> <p>I regret saying what I said about her, and I do love her really. She is my gran. </p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/19/gran~1139964/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-18:/2006/09/18/i_look_well_apropos_of_nothing~1136782/pastabake2006-09-18T11:54:00+02:002006-09-19T11:02:43+02:00 <p>Since I fell ill, I have found that people fall over themselves to tell me how well I look. </p> <p>I've often wandered why they do this.</p> <p>Have decided there are three main reaosns.</p> <p>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.</p> <p>Two) They hate me and think me a fraud, and want me to know that they think me a fraud.</p> <p>Three) They are lazy/busy, and don't want to have to acknowledge I am ill because that might make demands on their time.</p> <p>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! </p> <p>This drives me mad!</p> <p>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!</p> <p>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.</p> <p>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!</p> <p>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!</p> <p>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.</p> <p>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."</p> <p>Laughter all around.</p> <p>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!</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/18/i_look_well_apropos_of_nothing~1136782/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-11:/2006/09/11/oh_pish~1117648/pastabake2006-09-11T23:36:22+02:002006-09-11T23:36:22+02:00 <p>Today I went into the city centre to get one or two cosmetic things that just don't seem to be available anywhere handier. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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!</p> <p>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.</p> <p>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.</p> <p>I managed to sleep for about half an hour.</p> <p>When I woke up I felt groggy.</p> <p>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.</p> <p>I went to the loo. I realised I was spotting. That would explain the exhaustion and the general pain.</p> <p>Now after watching telly and resting for the evening I feel much better. My right arm just aches a little.</p> <p>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. </p> <p>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?</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/11/oh_pish~1117648/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-10:/2006/09/10/work~1112121/pastabake2006-09-10T03:02:17+02:002006-09-10T03:02:17+02:00 <p>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.</p> <p>Upshot. I have only applied for two jobs. This isn't a great seek-to-application conversion rate.</p> <p>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.</p> <p>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.</p> <p>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!)</p> <p>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.</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>Told her I'd consult her on future apps instead, and put it in such a way she couldn't argue. </p> <p>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.</p> <p>And on that cryptic note, I bid you goodnight.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/10/work~1112121/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-10:/2006/09/10/friends_and_family~1112110/pastabake2006-09-10T02:34:34+02:002006-09-10T02:36:01+02:00 <p>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. </p> <p>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.</p> <p>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!</p> <p>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.</p> <p>I shake my head at them both, but find I'm not angry with them any more. They are who they are.</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/10/friends_and_family~1112110/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-09-10:/2006/09/10/all_is_well~1112102/pastabake2006-09-10T02:19:51+02:002006-09-10T02:23:38+02:00 <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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. </p> <p>Things are as good as I had hoped they would be.</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/09/10/all_is_well~1112102/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-08-22:/2006/08/22/been_ill~1060488/pastabake2006-08-22T19:30:28+02:002006-08-22T19:31:53+02:00 <p>Just had a couple of woeful weeks. It was only a cold, but it brought back all my joint pain and zapped all my energy. My neck, middle back and elbow joint have caused me no end of pain and my swollen throat erupted into ulcers, which then spread to my gums. So has not been pleasant. Worse of all though was becoming tired and exhausted again. It was back to taking a rest after walking down the stairs, and not being able to do something for ten minutes without being so weak I felt like fainting. </p> <p>Normally none of this would have bothered me, just part and parcel of having a cold. But because I have spent so long being so ill, I was worried I wouldn't be able to get myself well again and would be stuck back at square one. I was struck though how I had forgotten how it felt to be so stiff and in so much pain all the time, despite the fact that I was like that for years.</p> <p>But I seem on the other side of it now. The cold and ulcers have cleared up, but I'm left prone to exhaustion. My heart arrythmia has gone bad again too, it feels like my heart is too big for my rib cage! boom boom boom BIG boom boom boom boom BIG boom. Very uncomfortable. So for both that and the exhaustion I have ordered C0Q10 again, which helped me out alot before.</p> <p>I wanted to order something for my immune sytem and glucosamine for my joint tissue as I can feel my one knee crunch and grind all the time now, and I raelly ought to help it out before it gets too bad, but I'm reluctant to spend any more money just at the moment on supplements because it's costing me a fortune I don't have.</p> <p>Not a great thought that every time I get a cold I'm going to be knocked about as bad as this.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/08/22/been_ill~1060488/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-08-03:/2006/08/03/bullish~1010149/pastabake2006-08-03T11:36:16+02:002006-08-03T11:36:16+02:00 <p>One of husband's friends invited himself around last night, calling with an hours notice to say he was popping around. I tried to put him off because I've been suffering with a cold and yesterday I just slobbed around the house in scruffy clothes and didn't shower, waiting for my husband to come home and give me some TLC. He wouldn't take no for an answer however, and said husband had suggested he come round this week because they had something to sort out (long story) so I told him to at least give husband a chance to get home from work and have a cup of tea before he knocked on our door.</p> <p>When he came I was just getting into the bath, and it didn't take long to realise that he had bought his two little girls with him - I could well hear their general squeeling coming from downstairs. I should have had the sense to realise then that little girls have even less bladder capacity than me and that at some time before the night was out they would want to use the loo.</p> <p>I had to get out of the bath after about half an hour to let one of them use the loo, and then didn't feel much like getting back into the bath after that so had a shower instead.</p> <p>After they'd gone husband said his mate had been a bit weird and had given two abortive attempts to explain why he'd bought the kids. </p> <p>I've no problem with him bringing the kids, I've met them and they are two lovely little girls, but I don't understand why he didn't mention it to me on the phone. Then I would have been showered for when he arrived and spent some time with them. As it was, I felt like an ignorant cow holed up in the bathroom keeping out of the way.</p> <p>The thing as well about bringing kids around to a house in which no kids live is that there is nothing here for kids to do or eat. Or even drink. There is only tea or water in this house. There are no crisps, or chocolates or biscuits to offer. No things to play with. So whilst husband and his mate tried to talk business they were also trying to handle two lively little bored girls. Husband thinks that the idea had been for him to offload the kids on me whilst they got on with things, in which case a bit of notice would have helped! Not to mention actually being told the kids were coming around!</p> <p>So now his mate probably thinks I'm an ignorant cow who hates his offspring, but it was just the wrong thing to happen at the wrong time. </p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/08/03/bullish~1010149/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-08-02:/2006/08/02/someone_else_being_insensitve~1008056/pastabake2006-08-02T14:46:50+02:002006-08-02T14:53:41+02:00 <p>I went to lunch with one of my friends. She can be good company, we have a laugh together, text each other often, pop round to each others abodes when either of us is ill. Which is frequently.</p> <p>She's the closet thing I've got a female best friend. But I'm definitely not her best friend because she already has one of those. They've known each other sice primary school. My friend helped her best friend organise her wedding and went on their honeymoon with the happy couple, that's how much of a best friend thing they've got going on. Slightly creepy if you ask me, but each to their own.</p> <p>Anyway. My friends best friend is pregnant. It's a honeymoon baby. They weren't trying for a baby you understand, but they weren't not trying either. How fine and dandy for them. </p> <p>And I'm getting lock, stock and barrel of the whole pregnacy saga. I'm getting the ultrasounds, the cot buying, the name deciding. And quite frankly it's killing me. I was really good at first. I smiled and asked questions and generally tried not to act like my heart was being ripped out, but that only encouraged the forthcomming of more stories. So when we met for lunch this week, when my fiend started on the saga of her best friends pregnancy I responded in the way I felt like responding, which was to change the subject.</p> <p>A part of me wonders does she not do it deliberately, to be honest. Dropping bombshells of a subject into conversation is something she has always done, as she puts it, 'just to see what happens', so it wouldn't be a great surprise. She was the one who recently told me (like I wouldn't have heard) that some people think ME is a made up illness - and didn't meet my eye as she said it. She was also the one who when I was discussing my lack of ability to get pregnant all those years ago when I was actually trying to get pregannat, told me to stop going on about it and to cheer up look on the bright side etc etc etc.</p> <p>Surely she must have joined up the dots? I was trying to get pregnant. Never did. Got diagnosed with endo. Still don't have children. I mean, it shouldn't take a genius to work out what's happened with me. And so you'd think that she'd reckon that talking about her best friends easy pregnancy would be painful for me. But obviously not.</p> <p>Perhaps if I just keep changing the subject when she starts to tell me the latest she will finally work it out. If I don't start letting her know now that I don't want to hear this stuff then it will never stop, because she's going to be a godmother to it when it's born. </p> <p>I could of course just tell her how I feel about it, and ask her not to bring it up, but to be honest we're not that close emotionally and it's not something I want to talk about with her directly.</p> <p>Update:<br> having read this through, I feel I've been a bit hard on my friend. I think she probably talks about her best friend's pregnancy because she's her best friend and she's excited and pleased for her. I don't think she does it to get at me, not really. It just feels like that because I'm so goddam sensitive.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/08/02/someone_else_being_insensitve~1008056/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-30:/2006/07/30/diclofenac~1000317/pastabake2006-07-30T15:32:51+02:002006-08-06T22:37:13+02:00 <p>Monster drug.</p> <p>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.</p> <p>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.'</p> <p>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. </p> <p>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.</p> <p>Then today I came across this:</p> <p><a href="http://www.fertilityplus.org/faq/nsaids.html">http://www.fertilityplus.org/faq/nsaids.html</a></p> <p><em>"Infertility may sometimes be associated with NSAID consumption"</p> <p>"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."</em></p> <p>Fuck, what do doctors shove at us?</p> <p>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.</p> <p>Just tought I'd share.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/30/diclofenac~1000317/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-30:/2006/07/30/i_fell_asleep~1000196/pastabake2006-07-30T14:35:29+02:002006-07-30T14:35:29+02:00 <p>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.</p> <p>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.</p> <p>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!).</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/30/i_fell_asleep~1000196/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-29:/2006/07/29/day_trip~997687/pastabake2006-07-29T11:53:19+02:002006-07-29T11:54:10+02:00 <p>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.</p> <p>I really need to get away for just a short time.</p> <p>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. </p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/29/day_trip~997687/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-25:/2006/07/25/moving_on~986504/pastabake2006-07-25T09:28:15+02:002006-07-25T09:28:55+02:00 <p>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.</p> <p>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.</p> <p>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.</p> <p>Still, I am not dripping snot and tears over the keyboard this morning, so that's a start.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/25/moving_on~986504/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-24:/2006/07/24/craving~984017/pastabake2006-07-24T12:04:48+02:002006-07-24T12:49:10+02:00 <p>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. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/24/craving~984017/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-23:/2006/07/23/gran~981725/pastabake2006-07-23T13:23:05+02:002006-07-23T13:23:05+02:00 <p>Had an encounter with Gran last Sunday. My dad's mom and my only living grandparent.</p> <p>I feel awful saying this, and I hope it doesn't make me look evil, but she is such a horrible person.</p> <p>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. </p> <p>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.</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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?</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/23/gran~981725/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-23:/2006/07/23/health_update~981637/pastabake2006-07-23T12:40:45+02:002006-07-23T12:40:45+02:00 <p>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.</p> <p>The remaining physical problems are, in no particular order...</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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:</p> <p>5-HTP<br> CoQ10</p> <p>EPO<br> Omega 3-6-9<br> Omega 3</p> <p>Inflamol<br> Magnesium</p> <p>5HTP<br> CoQ10</p> <p>5-HTP</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/23/health_update~981637/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-23:/2006/07/23/ent~981508/pastabake2006-07-23T11:40:10+02:002006-07-23T12:08:28+02:00 <p>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.</p> <p>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... <strong>stress and depression.</strong></p> <p>As soon as he said this my FOB OFF alert flashed before my eyes.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>Anyway, I await the MRI.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/23/ent~981508/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-14:/2006/07/14/operation~959047/pastabake2006-07-14T13:51:53+02:002006-07-14T13:52:24+02:00 <p>Forgot to mention, got the date for my laparoscopy. It's on my birthday. The week we were supposed to be going to Amsterdam.</p> <p>Oh how I laughed. </p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/14/operation~959047/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-14:/2006/07/14/fate_s_odd_little_twist~957989/pastabake2006-07-14T05:57:29+02:002006-07-14T05:57:29+02:00 <p>I went to X to meet Mark, my Employment Development Officer again and his assistant, shall we call her A?</p> <p>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. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>Now I'm getting e-mails from her suggested obvious and cliched things to put in job apps. Feel slightly embarrassed.</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/14/fate_s_odd_little_twist~957989/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-14:/2006/07/14/symptoms_and_supplemts_update~957984/pastabake2006-07-14T05:41:14+02:002006-07-14T05:41:14+02:00 <p>Since adding the Acetyl L-Carnitine, Inflamol and magnesium to my regime of supplements things have not been great.</p> <p>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.</p> <p>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?</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/14/symptoms_and_supplemts_update~957984/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-06:/2006/07/06/slight_concerns_about_memory~939645/pastabake2006-07-06T23:12:09+02:002006-07-06T23:12:09+02:00 <p>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. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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. </p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/06/slight_concerns_about_memory~939645/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-06:/2006/07/06/getting_closer_to_working_again~938795/pastabake2006-07-06T18:02:49+02:002006-07-06T18:02:49+02:00 <p>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.</p> <p>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.</p> <p>This is what we have agreed for me:</p> <p>I'll visit his offices next week (we met at a local jobcentre) and meet his assistant so that she gets to know me.<br>He and his assistant will look out for jobs for me and make me aware of them.<br>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.</p> <p>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. </p> <p>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. </p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/06/getting_closer_to_working_again~938795/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-06:/2006/07/06/bad_in_the_heat~938711/pastabake2006-07-06T17:36:27+02:002006-07-06T17:37:50+02:00 <p>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.</p> <p>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.</p> <p>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.</p> <p>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!</p> <p>Eyesight seems worse too and my bones ache throughout. I'm keeping well out of the way of the sun. Pity, but sensible. </p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/06/bad_in_the_heat~938711/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-07-01:/2006/07/01/supplements~924952/pastabake2006-07-01T12:10:16+02:002006-07-01T12:30:31+02:00 <p>Ok. For my records. Full update of new drugs regime.</p> <p>Daily:</p> <p>300mg <strong>5-HTP</strong><br> 180mg <strong>CoQ10</strong><br> 400mg <strong>Acetyl L-Carnitine</strong> (with 500mg Alpha lipoic Acid)<br> 600mg <strong>Magnesium</strong><br> 95mg/146mg/90mg <strong>Omega 3-6-9</strong><br> 100mg <strong>Evening Primrose Oil</strong><br> And also 250mg <strong>Inflamol</strong>! (blend of Scutellaria Biacalensis and Acacia Catechu)</p> <p>From here:</p> <p><a href="http://www.thorne.com/altmedrev/fulltext/alc1-2.html">http://www.thorne.com/altmedrev/fulltext/alc1-2.html</a></p> <p>"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"</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/07/01/supplements~924952/#comments">Comments</a> </small> </p>tag:endometriosisandme.blog.co.uk,2006-06-30:/2006/06/30/bad_customer_service~924035/pastabake2006-06-30T21:16:56+02:002006-06-30T21:24:42+02:00 <p>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. </p> <p>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. </p> <p>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.</p> <p>This made me a miserable person. I was lacking in humour, surly, bitter. Colleagues and customers were treated with the same contempt. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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."</p> <p>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.</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p> <small> <a href="http://endometriosisandme.blog.co.uk/2006/06/30/bad_customer_service~924035/#comments">Comments</a> </small> </p>