Governors meetings

Hello world.

Lets have a NICE blog entry today shall we?

I've always had a nice relationship with teaching staff and banging heads with them like I appear to be at the moment is not nice. I've always fought for them in my Governor role and worked hard when dealing with' tough as old boots' Headteachers who don't like to change their ways!
To explain more about my governance role;-

Every state UK school (That is every free school) has a voted for board of governors who decide the ethos of the school, set policy accodingly, look after the finances, ensure the buildings are of a good standard, make sure the children are learning inline with the national curriculum, employ staff and lots of other jobs too which escape me now.
I'm known as the 'boffin' one but also I'm quite good at getting information out of people too as I have good people skills. If only that teacher my daughter is having problems with would get down off her high horse! But I digress.....

A for instance here of what sorts of things I have done as I governor. I first became a governor at an Infant's school which is for children aged 3-7. As soon as I joined, I became the 'numeracy governor. I had a great teacher to work with who I had a good relationship with.
I used to go in to help out as well as doing my governor visits and decided with a friend to write the school's first visits policy so that all governors had something to work with. That policy was what the headteacher at the Junior school used to write his policy on and I've 'jigged' it since but want to look at it again if I'm allowed by the new chair! Anyway........After a year, the vice chair of governors phoned me up and said he was going to go for chair and would I be up for the vice chair role? NO!!! I was not ready for that and felt more happy to chair a committee. What I did not realize would happen was that next year, I'd gain more experience of governance than I'd ever know. I also (because I thought two schools would be the same as one) decided to go for the vote at the junior school. There were two places and there isn't normally much of a contest but I was quite proud to win by a landslide (Not to show off though) So I had these two governing bodies and I thought it would be OK......WRONG!) All hell broke loose at the Infants and I had to help plug the holes in because the following year after that we had an inspection and it never ever ends.
Idecided not to fulfill my term at the Infants and left early. The irony was that I was at this point vice chair at both schools and finding both unique and very hard work in fact too much hard work. I tend to put everything into my 'job' and so even though I wasn't working it meant I put more into this. I handed in my resignation in January and one reason was because I was watching my mother overwork and I didn't want to do that to myself. I didn't know that two weeks after I was to finish at the infants, my mother was going to suddenly drop dead at the age of 56. Big shock......

My meeting today is a committee - It's pastoral and personnel which basically covers staff, pupil, parent and anyone else who happens to be at the school welfare. Good fun.

Teenage daughter from hell alledgedly

What have I done to deserve this nightmare? ARRRGGHHHHH!!!

Yes I have inherited a younger version of ME. I've told her she's rubbish at it compared to me and to try a bit harder so she has and now she's damn good at being vile and repulsive. Yesterday the teenage Queen of mean threw the most horrible words of nastiness at me and followed this off with "I hate you".....Hmmmm "OK" I replied, "I'll phone up nanny and you can stay with her until we can get a place in care!" Oh her face was a picture, she did not expect that from me I can tell you. I kept myself calm even though her words cut right through me. Mind you my mother has hurt me much more than my daughter ever could and so I'm hardened to it (I have forgiven my mother and that comment is said with forgiveness and love even though it sounds like it isn't) I adore my daughter and could not understand she insisted on interrupting a phone call I was having with friend of mine who funnily enough was talking to me about her ador-orrible teen. My DD interrupted over four times and my friend cold not believe the vile that dripped from my daughter's mouth. Yes that girl knows how to hurt.

The other day she tried this game but not as severe and said her sorry later and said she didn't hate me. Yes I know that as I have been 13! She's only repeating what I said to my mother (Bless her). Problem she see's that her brother is treated differently because he is a different child. Shouldn't they all be treated differently?

I've just fought again for her because of one of her teachers. Of course we've had a huge row the night before but she's a teen and I told her she had to write a letter of apology to say why she did not turn up after school when this teacher asked her too. (Even though my daughter felt she had done nothing wrong and now I feel even more angered, but read on)

This teacher has according to her head of department has 'good' ways dealing with behaviour but it does not make sense to me why my child who only normally only an occasional sullen monster at home, should behave badly in one lesson? I won't go on about what happened at the beginning of term but I had a very upset daughter. No maybe I should! Some very inappropriate things were said to my darling daughter (to be a DD from now on as it's quicker) and I had her repeating them to her dad and me in tears. I phoned this teacher and asked "Have you an problem with my daughter because she's come in floods of tears three times now and this is not acceptable?" I've spoken to a couple of friends and I this teacher has spoken to her superior however when I have spoken to my friends who are all I think all have good morals, they've been stunned that a teacher would speak to a child in such a way! If you were trying to "cheer her up" as I accepted the answer to be, those words would not be used.
I managed to get my DD to put it in the past or I thought I had except it seems I have not? My DD said that she feels things will change for about a week and then all will revert back to old. The difference is that the head of department has assured us that my DD can move to an alternative class if WE are still unhappy in the new year. My DD has an assessment in the next couple of weeks and believe me my daughter will be doing the best she can but if her work has dropped then we know why?

I've deleted some of what I wrote because I was angry yesterday when I first spoke to the head of department. What my DD told me on numerous occasions and what I was told by the teacher did not match and my DD does not lie! She finds it physically impossible to lie to me!!!

To briefly explain. A situation occurred in class where my DD was given an envelope by her teacher and she knew what it was and put it in her bag. The other students in her class kept badgering her about "What are they?" In the end she became more and more frustrated and told them to shut up. In all of that time the teacher did not ONCE tell any of the other students off but then gave my DD an after school detention. My DD said that was not fair and she could not come back because she had orchestra practice. She had some duets and a solo and its her only joy at school right now. She told me more than once that her teacher said she had to come but her teacher denies hearing my daughter saying she couldn't come? Odd that and stinks of cover up. Because my DD did not come back after school, the policy is that the 5 mins (which the teacher said on the phone to me was TEN minutes!), turns into a 30 minute detention. The head of department was insisting that my daughter deserve this 30 minute detention "To show support for the teacher". I'll be honest but as soon as I realised the LIE, that's when I knew my DD was NEVER going to do that 30 minutes - FIVE yes, thirty NO.

The morning after the night before is this.

My daughter wrote the letter and apologized for not returning to class and told her teacher she was angry with her. I have it from the head of department that we can move my DD if we are still unhappy in January. My DD said that a week after I spoke to her teacher last time she reverted back to norm. My DD is so unhappy in that class and this is nothing like the past two years. She was one of the best in that class when she joined and she better still be in her assessment. We of course will ALWAYS support her and I felt quite peeved with the head of year when she implied that "Of course you will be ensuring she does well in her assessment?" Maybe she should talk to my DD's old teacher from the past two years as it was the same one! HE KNOWS HOW MUCH WE CARE FOR OUR CHILDREN AND HE KNOWS WE SUPPORT OUR CHILDREN! Obviously I'm still angry? Yes I am but my daughter has switched off in this subject and it's so sad because why should it be up to US to push her to well in an assessment when it's the teacher's job to teach her? I don't know when she last had a homework in that subject and we always ask about this?

Last bit.

I hope that this teacher gets some more support I truly do because she needs support. She's probably a brilliant teacher in the subject she teaches and it's the behaviour that is letting her down. I've been a school Governor for nine years and I've seen a mixture of classroom environments. I imagine teenage ones are a whole lot harder to deal with than the infant and junior ones that I have seen but it is still teaching and teachers are sometimes abandoned. I've seen one teacher who received an brilliant score at ofsted yet she was one of the worst teachers I have ever come across. By luck she never taught my children. What a relief I can tell you. The term before my son started at junior school, she shouted at him because he happened to be waiting for me! I was talking to the headteacher and she decided that this little boy sitting doing nothing was naughty because he wouldn't answer her! Why wouldn't he answer her you may ask? He had heard so much about her that he was scared of her!

I just hope that the head of department accepts my daughter's letter of apology for that teacher and in turn she accepts it because if not it is STALEMATE. I am fuming to know that teacher could lie but there are other children who heard my daughter so at least I know she will not be called a lier!

As for her being a right madam! I can handle her at home - Read tomorrows entry - maybe not?

Eton Road

X Factor last night produced an interesting final with Eton Road going out which is what I suspected. Thankfully the 'Ray fans' voted which included me! I don't why but I liked his songs because they were very him and not what one of the other judges would want him to sing. Leona is still solidly my favourate and after singing what she did last night I can't see her not having a record contract after this.

Home life is rather dull. I'm not up to anything other that recovering from yet anbother flare up which is the story of my life. My head is hurting and I need to catch up with some friends across the ocean. I'm planning to call them tomorrow if I can as today is likely to be busy on the phone lines. My orignal plan was to call on Thanksgiving but that was impossible . I couldn't get through and then my pain levels stopped me wanting to talk to anyone. I reverted to my shell and only wanted to blab on the net to this blog if anything. I feel that dispair of depression all around me and I don't know how to handle it? I'm concerned about it as sometimes I am like ai am now and feel rational. I have a governors meeting on Tuesday night to attend and I'm going to have to get out of this shell for that and I'm going to have to talk to people too. I don't know why I'm struggling though? I don't know why I'm feeling like this? I desperately want to talk to my friends yet I'm cutting myself off from them? I've not gone to my email for two days and that's partly because of the pain monster and partly because I've given time to my family. Oh remember yesterday I talked about my son? He's had those problems at school and feels uncomfortable at school yet yesterday at young carers he decided to join in with the X Factor and sang a song! My lad sings like an angel under normal circumstances but he said he was laughing so much he couldn't sing. This is the son I know and not the one the bullies are turning him in too. My family come first and always will and it's so hard when I feel low.......Finding coping hard. Might go and finish writing something more on my detective blog because it might help me get out some emotions? I really don't know? Would truely like to do some housework but know I'm going to pay for it big time!!!!!

The X Factor

I bet if you are in any other country other than the UK you don't know what the heck
'The X Factor' is? It's a brilliant show we have in the UK full of talented future stars or should I say last year's winner is beginning to form a nice following and has a cracking voice and goreous body. (Oh did I say that? He's 19 and I'm 36 and haven't a chance of latching on to any of his gorgeous bits!!!)
So - The X Factor is a fabulous show where we have three groups; the groups, the over 25s and the under 25s. There are three judges or mentors who look after the groups but ultimately they have to vote the acts off in the end after the public have voted them down to the bottom two. With me so far? Good..... The problem is that on the BBC we have Strictly Come Dancing which my darling American friends have copied as Dances with Stars. All good shows are copied and I can see why. You've even nabbed our 'Len' who has now gone over to America and judges your dancers but has come back to the UK all moody! What on earth have you done to him? We used to call him 'Uncle Len' in series one and two and now its more like Uncle MEAN!

The TV companies have us viewers snared. They know we want to watch both programmes and even though I suspect the winner of The X Factor is already decided (Leona - If I'm wrong then I will eat my shoes. Her voice is devine and she sung Whitney better than Whitney tonight),....this show is my fav on a Saturday night.

I've had a better day today after a couple of diabolical ones. My achilles tendon has flared up which is kind of ironic really as I am NOT taking an antibiotic which does not cause tendonitis - Oh did I tell that story? I did mention about the Urologist and his script for the anti Bs and one of the side effect's, although rare, was tendonitis! The day after I started taking the new one my ankle started to swell and the pain came from nowhere? Honestly it was so strange. It threw my back out as well because I could not put weight on my ankle and so I was all over the place.
Today has been the best day yet so I put some washing on with the help of the kids but they were in and out. My daughter had a concert which I would have loved to go too. I felt rotten not being there .......Just couldn't manage my pain levels enough to do that minor drive up the road which I would have IF my ankle hadn't flared up!!! My son went to the last young carers group meeting ever because the funding is changing and so the project is changing how they organise things for the kids. The teens plus group is still running however there's not enough support for the pre teens except for today when it was packed. He loved it and even sang in their mini X factor which is something he wouldn't do at school. Talking of which, he's had a rotten week and had a tgerrible time because of bullies and in the end he burst into tears after he kicked a boy who was tormenting him. My son would never lash out like this and it is not like him. I've spoken to his teacher twice in the past two days and I believe she's on top of it now and she's going to speak to the headteacher as well. Being the ex chair of governors and knowing the headteacher, I know this will be sorted; actually I trust the teacher to deal with it first and THEN to go to the HT. My friendship with the HT has nothing to do with it and I've left that out completely. I've also had to allow my son to deal with the bullies himself which has been terrifying to stand back and watch but Thursday I asked if I could now help and he said yes. When I spoke to his teacher on Friday and SHE told me my son had kicked the other child I struggled to hold on to my emotions as I knew that my son had reached the end of his tether. He needs help now and he needs lots and lots of love.
I've decided that one way I can help my son deal with his emotions is to tell him that when he feels angry/sad/emotional, he is to write it down straight away and he has a box to put it in and we have a time to talk together or he can choose to talk to his dad or us both together. He loved this idea! I was very happy that he was happy.

My teenage daughter is another matter. I suggested the same idea to her as it's worth a try but she's not at all interested. It's better that I talk to her when she's in the mood. I feel sometimes that I only get little snippets of time when she's "In the mood" and then she turns into the hellish teen from monsterland.

Need to sign off as very tired now and my back is rather achy. X Factor results later - Who will be knocked out? Think it might be Eton Rd or Ray and will tell you tomorrow.

Chocolate, Tendonitis and Thanksgiving

To all my American friends!

Hope you all have a good day.

I have a horrible case of tendonitis which is causing my right ankle a whole load of hell. It hasn't played up. Oh now Yahoo is closing??? Oh well......

So, I wet my pants sometimes?

I've been in the most horrible flare up and my emotions have been all over the place. I've spoken to a couple of friends in America and I'm talking to my friends this side of the world who are in the same boat as me and this helps me realise I'm not alone and then of course I feel ashamed of myself for the self pity! I've been trying to call one of my friends who I'm worried about but I couldn't get through to her on Monday and yesterday she was out. I'll be honest, I couldn't stop crying yesterday anyway because my pain was so high and my husband had to take the laptop off my lap as I had this sudden kick of almighty nastiness - what other word can I use? I hated yesterday.......Such a terrible day which left me frightened about today. The fact I hadn't slept the night before didn't add to my mood and in the end hubby tucked me up in bed and brought me and my daughter a Chinese Takeaway, (our fave) and we chatted about teenage stuff upstairs in my bedroom.

I've tried to come off CELEBREX.......It is not possible. My pain is catastophic and I do not use that word unless I have too. Last night I didn't know what to do with myself and so in the end I took an extra 10mgs of AMITRIPTYLINE and took some extra ORAMORPH a little earlier than I should of and it knocked me out for an hour. I'd hoped for longer but looked at the clock and couldn't believe it? Then.....GOOD NEWS! I fell asleep for four hours non stop. The meds worked and I crashed out. I've learnt to keep very still when I sleep because any movement controls the pain monster and that will wake him and me up. It is not very nice to know that my life is so controlled by such a horrible monster but that is the way it is.

This morning, I've just had my first bi-annual CYSTOSCOPY which in itself is not that bad and only took a few minutes but because of the pain, the build up was horrible. My muscles refused to de-tense (If that is the word?)

I met the urologist who was doing the process who was OK I suppose.....Not my usual chap who is a lovely man. This one I tried to joke with but could not? Oh well.....never mind. I told him my pharmacist had told me I could not take the medication prescribed last Friday by my Urologist because it interacts with my celebrex and he laughed. He told me they use it all the time and he's never seen it cause problems unless a person is epileptic. I told him I also take anti epilieptic medications for my pain. (I don't think he understands pain too well because he didn't really appear to understand this much) But anyway he said he would give me another med that I'd taken before. He then asked me about how things were going and how often I cathed and I told him about what was going on and remembered to tell him about how I kept wetting my pants at night! Yes terribly embarressing and the one thing I forgot to tell my own Urologist. I explained to this Uro that sometimes because my bladder works better, I don't need to cath as much (twice minimum); however, on some days I may need to cath 6-7 times. He's told me I need to be cathing at least 3-4 times by what I just told him and to make sure I cath before I go to bed WHICH I ALWAYS DO! The other night though speaks volumes - I cathed at 11pm then woke at 4am and needed to go again then at 5.20am my bladder let go while I was sleeping. Thankfully it was a very small amount because of the cathing an hour or so before. I doubt the infection is helping matters!

So I then went and had the CYSTOSCOPY which uses a flexible tube to look inside your bladder.
Everything was fine except to say I have a rampant infection which we already knew about! The urologist decided that I need to have a very strong antibiotic to combat the very severe infection and so I am now looking forward to the side effects of that as well. Hopefully I will be OK with this!!!

I don't feel as stiff and uncomfortable as earlier thankfully. Obviously it was partly to do with the tenseness of worry and also I have not had acupuncture for 3 weeks. My acupuncturist has had surgery 3 weeks ago and she's back at work this week but only part time. I'm seeing her tomorrow and I'm looking forward to it as I also enjoy chatting with her. She has a very interesting life and I like her as part of my life. Talking of talking - Going to ring up the friend I was talking about earlier (The one I couldn't get hold of!) I hope she's in toda as if not I'm going to cry!!!!!

Upset

I don't know what I am supposed to do?

I'm in this huge dark black hole and I don't want to talk with people and I'm putting on this great act of 'everything is fine' but actually everything is not. The problem is that when I feel like this I don't get the enjoyment out of those things I used to do and the computer is one of them. Pain is taking away so much out of my life and I am struggling to stop it steam rollering over my life at the moment.....and then instead of support I find some do not understand that I am not superwoman? Maybe that comment is a little unfair and I don't mean it like that however, it is horrible when I feel so down all the time and don't even want to talk to my closest friends......

Yesterday my best buddy came over because I was not returning her calls and the same day I recieved an email from another friend doubting my friendship. I'd only got out of bed at 4.35pm and my friend turned up five minutes later and actually I was so pleased to see her. We've agreed to a code now though so that if I don't want to talk that's OK but I'm not going to worry her any more. The second friend was different and I think it was a combo of things which caused the reaction. One reason was someone had emailed her saying I was saying she wasn't who she said she was? WHAT?????; another I believe, is my daft old detective pigletwiglet blog which has NOTHING to do with my friends. I have opened that blog because for instance, people who have either taken my name and used it on emails and then sent those emails to others; for example another person who supposedly lied about their medical condition and then has continued to lie and lie. You may have come across a person who is attempting to steal money from others on a forum where you are a member and the other blog to give tips and to stop this from happening to YOU. There are so many people finders but these quite often have inaccurate information and I aim to give further tips on how to decipher this and break it down to make sure you are correct. Go to my profile if you want to go to the Detective site there but at present there is not much to read! I haven't had much time for it over the past few weeks and maybe I started it because I felt so angry at the time? However THIS is my blog for ME and my friends, family and anyone who wants to read it. So I believe my Detective blog may be upsetting some of my email friendships because maybe they think I'm looking them up or something? ABSOLUTELY NOT! True friends are true friends are they not and therefore need nothing to worry about. I've lost some email 'aquantances' who have disappeared and I've realised that some of them are the same person but others sadly are either naive or mentally ill. It's easy to manipulate I suppose. I've been manipulated on the internet - Hence why the detective blog....

So back to how I feel today and those friendships. I was speaking with another email friend and she made me think about something else......I talked to her about when I saw the pain psychologist and said that the psych had put the seed of depression in my head and now of course I was feeling depressed but the truth is that is not true! I am suffering with that dredded D word and I'm not acting with my friends the way I normally do and maybe my 'out of charactorness' is making them think things that are not true? My first friend was easier to deal with because I could speak face to face and tell her it was nothing she had done and I was avoiding her.....Just felt so blue. My second friend was more difficult to deal with because of the complexity of it all?

I put this to draft back on the 18 November when I was way down in that dark hole. My friends know who they are and I hope those who I haven't spoken to for a while know I love them to bits.

Wizard Report

Went to see my Neurosurgeon on Monday and its only now that I've managed to get here to write an update. As you can read from the previous blog entry I'm not a happy bunny so forgive me for my mood here and the appointment itself wasn't exactly happy.

My Neurosurgeon has moved the goalposts again! We agreed to the surgery in August 2005, NINE months after my last surgery to 'detether my spinal cord' See this website for more information on my condition. It is written by a good friend on mine who has also had surgery and still suffers with symptoms. http://www.btinternet.com/~tetheredcordresources/spinal_dysraphism.htm
So months past and you if you are a newbie to my blog then you need to read my old blog......But anyway it's now EIGHT MONTHS! or just about and my surgeon who told me in August 2005. "Your sugery will take you a year to recover from"; he's now telling me I'm not likely to see any improvement for up to 3 or 4 years!!!Oh for goodness sake, make your mind up man!
His thoughts on why my pain is still deteriorating.......?????....... This could be because air bubbles may have become trapped at the bottom of the fillum (the lowest part of the cord) and these air bubbles cause pain. My NS doesn't want to subject me to an MRI and initially said he'd wait for 12 months. I talked to him about my bladder problems and asked if I should be worried about them? Put it this way - I DID NOT GET AN ANSWER! My NS told me that this is the hardest time because apparently I'm still in the early part of recovery - EIGHT MONTHS? I'm not to give up hope because that's the important aspect and my NS is going to talk to my GP and pain management doc and see if I can have some intensive physio but only if it is with pain management. I have no idea if this will happen? I like the sound of it IF I get good pain control. I wrote to my PM doc 3 weeks ago asking if I could up my MST (Morphine Sulphate) because I'm taking so much breakthrough medication......Still awaiting an answer and no chance of an appointment! Me - Angry? NO! Furious? YES!!!!!

By the time I left my Neurosurgeon, he had agreed that he would do some nerve study studies because they have never been done and should have. No, I have had one done but it was a long time ago. These will be more intensive and also that MRI that I hate so much......Back to Bristol then.

Over and out.

Prison sentence

I feel so sad as I write this because my heart is breaking yet again. Yet another row with my husband and yet more tears are falling down my cheeks.



I wrote what I did above about 3 hours ago and now my husband is sitting on the couch with a smile on his face which is a rarity. I'm still not smilling. I do not know what to do?

We talked and we talked and I gave yet another ultimatum and my husband decided that he wants to stay here. I'm not sure if he wants to stay at the family home with the children and 'security' or if it is because it is with me? My heart is full of sorrow and I feel so sad...... Thankfully the kids are not at home; both are at friends houses and I'm grateful as it has given me some space. I can take time out to tap away at my keyboard and he can sit and sulk in his corner......and smile (hooray) now and then.....I love his smile! I wish he'd do it more and if only he would do it more? It has been a hard week and I am about to post another entry about the neurosurgeon appointment because that is a different matter.....Actually the two go hand in hand because pain makes our relationship harder and my husband uses my pain as an excuse. If only he would stop doing this! If only he would see me instead of the disability? I am so sick of that pain monster and if it wasn't for my kids I know I would have given up on this marriage years ago. I don't think I even would want to live with this life anymore......

Maybe I feel this way because of what has happened yet again today. I can't stand the thought of another attack of the pain monster which is going to hit because I went to the hydropool today and decided to go a little mad. After having a brill time at the pool I did NOT expect that I'd hit such a low later on. I needed to call a friend but the two choices I had were both out at work at the time and so I had no one to talk to and so I only had my blog........ Don't know where to go or what the future holds but one thing is for sure I know that my life is not a made up life like some peoples! I was reading about a person who used to write to me and I've since found out she was one of those multi personas....Goodness knows what is going on with her??? It's all make believe!

Pain program

So following on from what I was told and be warned I may have to cut this short or this entry may be rather bad because I have horrible pain today. The psychologist told me that in the pain management program I would learn some techniques on how to deal and cope (same thing?) with pain (Hope they're new?); I'd have a session with pharmacists and another with pain docs to discuss medications etc; the second to last session would be a half day and the last was a whole day (10am till 3pm). If this was for tomorrow she's right I wouldn't cope with it so it's better to wait.

I see my Neurosurgeon next Monday and I hope my pain levels have dropped by then because I hurt like hell today. Yesterday I told the pysc that I was waiting for the good patch to go away and I never enjoy the good times as I'm always looking over my shoulder for those bad times. The PM program will help me because apparently it will help me get my head around this better. My pain is never going to get much better than this and I have to be realistic. I'm going to ask my surgeon about this 'dead nerve' business and ask why I'm having so much pain from it. Its difficult for him because he has to answer this although he did not do the surgery. It would have been nice to see the surgeon who DID the surgery, I'm in sixes and sevens about it. Hopefully, both will be there!

My sciatic nerve is hurting today and on top of this I'm having terrible new pain in my pelvic area. I can't explain what the pain feels like but nothing is getting rid of it? I've written to my PM doc and asked if he can suggest a solution to take instead of CELEBREX and I'll phone up my GP tomorrow in case he's emailed there and there's a script awaiting me with an anti inflammatory which may help more. The thing is I also asked for an increase in my MST (Morphine Sulphate).......I'm again torn as to what to do because I've had another good patch where I coped with taking my daily dose plus an extra 30mgs not the 60mgs that I asked for. I'd calculated this 60mgs on the previous two weeks when I'd had a normal pattern of flare ups and calmer days. I've already taken 60mgs today and I still hurt.........and I forgot to say that I did NOTHING AT ALL last week because if you remember it was my mum's birthday and I was desperate to be able to get up to her grave and put some flowers there. Nothing else was important last week. I cannot continue doing nothing, I need a life and my personal sadness is that to have a life I need to medicate myself and I hate this so much. I live day to day and don't think about the future because I don't know what future I have? I hope to live to see my kids have kids and I hope I can get my pain levels down and with it my head will feel less cluttered.

Too much pain for pain management?

My assessment with the Pain Psychologist was this morning and how strange was this? I'm not allowed to go on a any pain management program because I'm only 7 months out of surgery and I'm in too much pain! How silly is it this? The truth is that I 'sort of' agree with her but then again I'd like to have some better skills to get through each day.

One thing I admitted today was that I'm fighting depression again. I'm not sleeping very well and I'm struggling to get through each day but it's nothing like it used to be and I can cope with things better than I used too. The problem is that it is eating me away as things look darker. The Psychologist wants me to go back and see her in a few weeks time and I'm lucky because most people only get one appointment, I suppose I need that extra hour of talk. The psychologist was rather strange herself though?? She kept twiddling her hair which I've never seen a proffessional do? It was as though I was watching her body language rather than she watching mine!

I managed to sit for the full hour and could of got up and walked around but explained to the psych that if I did that I would not be able to sit down again. It was also nice totalk to a professional and have a good cry and get rid of some of my own feelings of hatred towards this bloody pain. I've been told the the program will help me to help myself cope better and I can't wait!.......But I'm going to have to!!!!!

One down three to go

Had my urology appointment this morning which went quite successfully. Talked more about other issues than I did about my bladder though! I actually forgot to tell him that my bladder had let me down on more than a dozen occasions but I did tell him how irritable it was. He doesn't want to put me on medication to control it though because he knows how bad my dry mouth is as it was perfectly obvious to him this morning how much water I needed to moisten my mosh! I need to let him know about the embarrassment bit though and so I'll write to him and let him know that way. I talked to him about the lack of monthly periods too because everything has been affected since my surgery. I thought it important to let him know that it wasn't only the bladder that was letting me down. He's unable to refer me directly to a gynocologist anymore which is ridiculous but it sounds as though it's to do with money. This is why; - If a GP refers a patient, the hospital gets money but if a consultant refers to another consultant then the hospital doesn't get any money. This is silly but true. So now I'm going to see a gynocologist too. If my monthly visit from auntie(!) arrives then I'll cancel the appointment but I want to know what on earth is going on. My GP and my Urologist both say it's highly likely to be trauma of the surgery but I know I have fibroids and who knows what else is going on? Maybe my womb has prolapsed as well as the bowel?
Back to the uro bit - I need to change the cystoscopy appointment because I can't make next week and my urologist wonders if the irritability could be a stricture in the urethra. He asked if it had been more difficult to put the catheter in and it is sometimes harder and sometimes I cath and it doesn't work? All very odd so more hassle to deal with. I've got some antibiotics in case I have an infection this time and explained that my GP is reluctant to give me antibiotics but I tend to get rid of infections myself anyway with lots of water.

Next appointment is Monday with the Pain Psychologist and I'm looking forward to that one. It's only up the road but I may have to get a cab to drive me there. If I feel as good as today though I will drive, it's only a short distance after all!

Oh last bit here before I go. Positive thoughts, prayers and best wishes for my dearest friend Marijo. She's having a big bowel op today and I know she was terrified yesterday. That calm exterior was holding back the nervousness underneath. I'll phone the hospital later and check up on her.

God bless you Marijo. Love and hugs and positive thoughts
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