An appointment

So, I saw the gynae, mr hillard, on Friday. I had asked my GP to see if that appt could be brought forward becaus it was 2 months from last test to this appt. but she didn't. She also said she wouldn't throw me off the books of doctors but has and said she would write a letter, but saying I'm aggressive to my care givers doesn't help thank you very much dr faulty. One saying I am terrified each time I make an appt and my anxiety and abject fear may appear to be and has been often mistaken for aggression, but that would have been helpful.

My appointment on Friday went a little like this ... How are you ... No better, if anything worse ... Well you tests show nothing, you stil have a bit of intusseception but nothing to worry about, and the scan was clear ... Sorry, but I still have intusseception? ... Yes, but you've been to colorectal and they are saying its your muscles, anyways, we can treat your heavy periods, you can have a coil, endometrial ablation or a hysterectomy what do you want ... Erm, the neurogastroenterologist I saw said I might be worse off having surgery and I am not comfortable with a coil, endo ablation I know nothing about. And the neurogastro said he wanted to see my notes and order some more tests but i have not heard anything ... Well, find out whats going on with him. Tell ya what, look this up (writes novasure on a bit of paper) come back in 3 months Cheerio.

On friday after this appt. I called and left a message for the secretary of dr Coleman in Southampton, the neurogastroenterologist I have been referred to as it has now been 5 weeks since I saw him and the magic 18 weeks since refer but not heard anything, no tests, no letter to GP, no request for records from my local hospital. She called me back this morning to say he had started a draft and was going to be ordering my notes soon but had been on holiday the last 3 weeks, how very fucking nice for him. Thing with all this bollox is that looks like it is going to move along, something will get sorted, oh yes refer me here and there, but when I get there for the appointments or wait for the tests, nothing is forthcoming, there are no answers, not even to the questions I have asked.

I am fucked off. I am back in bed because I cannot handle being up. I wanted to take kids out, but cramp and pressure and now fear and anxiety have eclipsed my future again. I am hungry but too scared to eat coz what goes in must come out again and it's like sticking my hand in a fire voluntarily each time I can't fight the hunger any longer. And this is the colour of my future, to crave the outside, company that I bore stupid with my "not sick"ness, to not be able to go far from my bed or sofa and to live in fear that this is as good as it is gonna get, plans forever cancelled because I am a bit off and can't go out or bear the embarrassment of my friends at their pathetic mate feeling a bit off. It is, after all, nothing serious ... Just there, stealing my children's mother and all her love, because when all you see is the inside of the lav you can't love your children that much huh? When you cant bear to be touch because your skin is crawling, when all you can do is shout at them because they shout at each other and all i can heard is pain and hate. That the only escape I can think of from this pain is to take my own life but that would be the cruelest of all, how could any mother? I know only too well, I can feel the prospect of relief from this pain, discomfort, life stealer like a zephyr washing over me on a hot day, and then I remember I can't do that to them. In one of my more uncomfortable days I told them, Paul and the children of how I felt. They were angry, I  believe, both then and now, they would all be happier because they could get over a death, but the slow removal of my sanity, my independence, my life would be far more painful for us all. Paul did say, make sure I kill the dog too, he would not want to have to care for her as well.

All the fun of the fayre

Paul took children to the park and finally gave into playing crazy golf with them, well Sparx n MissMonkey, older girls went swimming and no1 son was at work. 

I wanted to go, I had done all I could to pace myself and not push my limits and stayed calm and without stressing ... Only to not be able to leave the house again. I am in bed because I'm cold and it's 24oC/75oF in here and I have goosebumps. Every time I move around I have the pressure feeling cramping heavy pulling in the lower left of my abdomen and when I try to go to the loo, only more cramping and tenesmus. My legs don't work properly, my hips and pubic bone feel like they are in a vice. From what I can gather, basically my weakened pelvic floor from the ODS (intussusception) had for 25+ years, 5 children, being over weight (although that is now negligible) and the many years of abdominal discomfort when I had been told there was nothing wrong with me, twas my weight, diet, lack of exercise, fibre, couldn't possibly be in any pain, I was making it up! It's depression, get a grip, take some pills, shut up and fuck off.

But the lower part of my bowel was shutting off, meaning I couldn't poo for day, weeks, months, yes that's right MONTHS! Because of it I have developed bizarre eating habits that are usually called bulimea nervosa within the psychiatric departments of medical establishments. This was more as a coping technique than a belief I was fat or anything else. I have always known I am an acquired taste, both my looks and personality, my looks I came to realise I wasn't as bad as all that when I was 34, my personality ... The jury still out on that one ... But my eating is about knowing what goes in must come out and the assosiated uncertainty/dread/fear that goes with that. I don't know how well or when or even if my body is going to deal with the food and I end up throwing it all up coz she decided, nope, not doing that now. I get hungry, starving because I haven't eaten for days, I gorge, thinking 'fuck it, I am too hungry to care about the outcome' and I am so desperate not not feel so weak, so unwell. Even though, I am not ill.

Today, I have easily gone to the GP and and cried and cried and cried for help, if I had one. Today my family again, stood around my bed waiting on me, waiting for me to let them down again,I did not disappoint. Luckily for them, daddy had taken the day off and picked up the slack. I sat here alone with the guilt and the pain and the loneliness of failing them again, being left behind again, stuck behind the door because outside is a step too far today. Just like yesterday. And the day before.

But I am not sick.

I now have the time

Dear Ebs just got back from Barnsley with a wee gift for yours truely ... A watch! I don't normally wear them as they stop after a day or 2, not because I never take off my jewellery in the shower, coz I remember watches :-p but anyways, Tis preddy and sparkly and my phone won't let me put up pix as its clearly a vegetarian and can't cope with my meaty old photies ;-) I do really luff it tho as more than anything ... It's got green sparklies!! The most important thing In life clearly!

It's been a while ...

Since I posted, and I've got quite a bit to update y'all on. I have had several appointments with various health professionals for what they are worth ... Guess I should start with them ...
I saw the gynae in May, he sent me for tests, a desecrating proctogram (where I went to visit the wizard ... Disembodied voice behind a curtain asking me to poo) and a pelvic scan. The results were to be given to me in 2-3 weeks from the middle of June ... Yes, of course, I'm still waiting! And a pelvic scan which was clear ... Wonder if they will take that as the scan showed nothing or there was nothing for the scan to show. Scan being only about 50% accurate.
Also had an appointment with a very nice Dr in Southampton, Nick Coleman a neurogastroenterologist. He was a little mystified as to why I had had so few tests ... But my previous posts explain that I think.
So, from what I can gather, gynae said I'm knackered have it all ripped out, not having any more children (most because I am broken ... But there may be some other reasons too) so what the point of keeping it all when it gives me so much grief (not being able to leave the house for more than an hour for 3-4 days of the month, hormonal response in my gut too, I was told I would NEED an hormone test too but that hasn't happened) I had the tests he recommended, my 2nd appointment for the 17th August I believed my GP was going to see if she could get it any sooner as it has been 2 months since the tests he ordered, but nothing except the GP surgery refusing me appointments as we live out of their catchment area and have been for 5 years, only it seems to be a problem now. When I last saw my GP she said she would write me a letter of introduction in the event that we are not moving back to the areas and would be looking for a new surgery. I got the letter which states that I take my bad moods out on my care givers ... Oh that is really helpful ... When actually, I get very frustrated, fearful and it takes every gram of self control I have not to run away crying when I am not listened to, when I am told again it cannot be that bad, not in the 30 years I have been suffering with this had one doctor areas through my notes before I walk through the door, not one has understood that I want to end my life because I cannot cope with this. Thinking about the future terrifies me. I don't want to think about a future where this is still ruling my life. The alternative is my children growing up believe their mother never loved them enough to stay alive for them.
When the reality is, they are all I have to live for.
I haven't heard anything from dr Coleman, but I guess he would write to my GP whom I am no longer allowed to see, so that's screwed that up for me ... All he really had to say is that there seemed to be more than one thing going on and that if I had some sort of functional disorder, I was basically hearing the noises from my gut as death metal at 300dcbs and everyone else has Mozart at 30dcbs and that he would not recommend a subtotal hysterectomy if that were the case as it would just make everything worse.
And my CBT has finished. I think she empathised with me and felt my frustration and maybe tried to give my fears and bizarre mindsets a little bit of  validity because they are what's got me through and because actually, when an uncomfortable health condition is ignored for 25 years+ and then for 3 years played down, made worse and ignored, then yes, it does make people ... Odd. I was able to kind of get to the bottom of some of my coping strategies but didn't really address changing them. Maybe because I can't at the moment or maybe she cared about as much as the rest ... I like to think she *got* my sense of humour and wanted to help me ... Then remembered she was getting paid to sit n listen to me. So whether she got me or whatever, she got paid, she listened, there are no more sessions, I am not better in any way.

typical ...

I've been sat around waiting, well not waiting, but I thought i may do a few things today. Maybe go to the folk festie or town/shopping centre or just to the park for a coffee n stuff, but waiting on others. I know I offered, but it seems that my offer isn't what everyone else wants from me ... and just writing this post is further proof ... wanted to go to festie this afternoon, reminded by children that if I was to go out we should go to the carnival ... I'd rather eat my own leg, don't know where loos are, or seating or how far everything is and as usual, not feeling great ... offered to go with no1 son to festie, but he had got a lift from a friend and didn't want his auld mum hanging about, offered to take no2 stepson, but he put me off for a couple of hours then another couple of hours, has now text me saying collect me in 20 mins and I also have to go get the rest of the minions from the carnival ... just as I start to write the blog post about not planning anything because I hate getting let down/letting others down, but I have lifts to give to thems that have a life ...

An hhmmmm and an aahhhh

Criptic enough title? Don't ask what it means coz I have no clue ... Just seemed to describe what is on my mind. I guess I haven't had time to post up about my latest hospital appt with the gynae, it went as well as expected, he has suggested some tests, another proctogram, which it would probably been a good idea to do one a year ago when it was clear the first surgery hadn't fixed me, instead I was shunt along to another surgeon with the covering letter "I can't manage this woman expectations, see if you can get rid of her" that I found went having surgery to remove some of the staples that were digging into me from first surgery that nipped and tucked part of my bowel, yes that's right folks, I had staples sticking into my arse on the inside and y'all wondered why I was a bit odd ... It felt a little like anal electrocution, actually ... A LOT like it. That is now ancient history and certainly not worth going over again in this post, so back to gynae. He is also sending me for a pelvic scan, he didn't say that certain things don't show up, in fact, short of ... You may require a total hysterectomy there wasn't much he did say apart from have tests and come back in 3 months and how having so many children normally will have done this ... So will living with a bowel condition no one would take seriously for 25+ years and are still not doing so. How much of this is because I am a disposable member of society, that, one the whole, the public would be better without me being counted amongst them. That concept does seem a little extreme, but I have come to recognise that the NHS does treat people like this, The elderly, the chronically ill, the disabled, I believe I am one of them. Probably because of my mother. She was one of the first British women to take advantage of the new abortion laws in 1967 and terminated a pregnancy at a clinic in half moon street london. Which is odd as there is no record of the actual clinic being there, just the place where you saw the 2 Phycs who decided if your mental state would be damaged by having he child ... Just as the procedure is today 45 years later. The way mother tells to story to all that will is listen is she was at a party for student nurses and doctors where she was drugged (read drank too much gin) and raped (read doesn't know the colour of the men she shagged) and my grandparents paid for her to terminate, my aunt went to visit and assures me she did have an abortion in 1967. At the same time however, and this is where it starts to get interesting) she was also knocking off a policeman name of John hill from Essex ( I know much more about him, the Internet is a wonderful tool) who had separated from his wife and children and was knocking off my mother. He was worried about loosing his job should he divorce and the stigma of having a child out of marriage, especially as he was still married to this other poor woman. So anyways, to add more dung to the shit heap, mother claims that this abortion was done by Caesarian section or hysterotomy. A very dangerous and not often used method of abortion. It would have left a very small scar along her bikini line ... It didn't. The scar she had is on par with my birth c/s scar that I was born from vertically. The same aunt that visited her with my Grandfather after the procedure assures me it was NOT by hysterotomy. I can only conlude that she had an earlier child, most likely around 1962, when she was discharged from the army nursing corp, the way she tells it it was for having a cat in the dorm, aunt tells it as a man ... Knowing mother, most likely the latter ... After this abortion in 1967 she was shipped downed here from Kent as mother would be unlikely to shut up about it and cause undue embarrassment for my grandparents, so in with my granfathers sister and her husband she moved and within 5 years met and coveted my fathers social status and family wealth so married him. About 16 months later I had to be born by c/s as her womb split and we both nearly died. The way she tells it, she was left for hours before the realised something serious was going wrongs and took her down for emergency c/s. A year or so later she go pregnant again, this time not by my father, infact looking back, no wonder my father is such a nasty bastard, he must have felt such a dick. She claims (and this one on is better than the party where she was drunkenly shagging all the coloured doctors) she had post natal depression (lie #1) and went to maternity unit for appointment (#2) and met an old colleague (#3) who thought she looked ill so looked up her address (#4) and came over to consol her and she ended up pregnant (# 5&6& maybe 7) and she never told my father, actually she got rid of me to my grandparents and my father was expected to build a relationship with my brother and for years he knew it was wrong, for years it was so blindly obvious that he was a fool to have turned a blind eye to it. I truely believe that my mothers mother knew, she did her very best to make me feel left out and other family members noticed. When i returned to my parents home when I was about 8 to live, my health issues started, my feet (accessory navicular -ask me about my lumpy feet) and my bowel issues, my back problems, asthma for which I received no medical help ever even after having attacks and going to doctors. I was told that it was in my head, it was not even written up often my gps visits. Mother would start with "she says... But I haven't found any evidence" because i lived with a nurse, she held herself up as evidence of my lack of symptoms. I was told I had eating disorders that they wouldnt help me with as they didnt believe they were particularly real illnesses, I just had to stop messing around and just eat something when I could not eat due to my bowel issues. I went to another gp once and told of my problems, he said i would have to sign on with his sugery to get help, but he was in wimborne st giles and i lived in poole,When I was 19 I got into hard drugs and became a heroin addict. For the first time I my life I had no pain and could function on all fronts. I could run forever, I could eat even tho I didn't ever feel hungry, I could walk for miles, I could work for hours and hours and hours without feeling dreadful. this didn't last, I was haunted by my past, the whole reasons I took drugs in the first place was because I couldn't handle my own head and when asking doctors for help, I was asked to leave the practice, or there we no doctors available to see me. I get this at my surgery now, but the gps have written such horrible things about me. I dont feel that anyone will ever take me seriously again. And I can ask myself a thousand times why does this happen? And I just don't know, is it because it was something starting before I a born? A kind of social cleansing? It didn't work if so, because i have gone on to have 5 children who are lucky to have such great health, a bit of asthma and touch of eczema but nothing like my brothers neglect (he has his own issues from that woman and not my place to go into) or mine. I will say tho, that he suffered neglect for many many years and that has caused him long term health conditions and lifelong implications. If anything I am more angry about the effects of her actions on my brothers life and the effects my problems have on my children, they don't deserve it, they are good people who deserve so much better and more than she's given. I probably deserved it. Quite honestly if I have been targeted as a disposable member of society I am firstly in whole hearted agreement as I do not feel like a worthy member of society and kudos for recognising that at such an early age and anger that they just haven't got it right and finished the job! It is almost a perverse pleasure I see in the eyes of health professionals that just know they have no intention of helping me, but get to tell me to fuck off in such a round about way. It's been 3 years and 2 months since I insisted I needed some help and all they have done is made my symptoms worse and my mental health even more unsteady. I rarely go out for fear of being caught out with an attack of the pain or if my bowel starts working or having to confront someone or something I feel is out of my depth. It happens, it happened recently and I still have to deal with the consequences I just haven't been well enough to go and "hand myself in" nor have I been allowed the time off from my duties as main carerer for my children. I was told I could do it in the evenings when he's available to look after my children, but evenings are very hard for me due to the whole state of the condition of my insides. Find that hard to believe of my husband ... Ask him!

Family stuff

Wanted to do a little post about my history ... Ancient History and ancestors and stuff like that. Been looking on family history sites, including some done by my own vastly extended family members and local parish records etc. on my fathers father side and back through to male line we have a confirmed marriage date of 1694, making our tree to go back to approx 1670ish? Think that is a fair enough date ... Only 300 years before me ... Makes my *cough* years fairly insignificant indeed lol having found Grandfer and Granny Guy on the 1881 census and then Grandfers parents going back to his mothers baptism in 1824. The family of granny wasn't so fruitful ... No idea of her parents past at all, I remember my grandfather Bert telling me yet thought his great granny was Scottish but who knows??? I certainly haven't turned anything up from searching parish records the last 3 days! I have also been compiling from memory and the help of the Leitrim-Roscommon census site, a little about my paternal grandmothers family, her parents and their siblings, haven't got too far with that one either, I need to confirm a few dates and names with my aunts before I have filled in the gaps. Tho gaps should include up to my great great grandparents names on my paternal mothers side. They were settle people and not travellers or tinkers. So that's in my favour as there are few records of travelling peoples be they travellers, tinkers or Roma, and would be very difficult to hunt down. Not that there were many if any Roma in Ireland at that time, being that the Roma people originated in India and up through northern Africa, the very word gypsy comes from Egyptians, travellers and tinkers were the roaming people of Ireland. I am purely making a point at the genetic and cultural differences that all though we perceive all people who choose not to live a stagnated lifestyle to be traveller/gypsy. That shit awful big fat gypsy whatever, on channel 4 only goes to propagate the myth that they are one and the same people, it also does much to cause unrest between settled and Travelling people of all types, not least of all that the people, any of them, are actually like that! I know its all shite, but your average daily mail/sun reader only believes what their rag tells them ... With shows like this what hope is there for equality, freedom or understanding in the future????? Glad I've got that off my chest ... Back to the tree of peoples ... On my mothers side I have a tree of her mothers side that goes back to mid 1700 and I have got to contact cousins to see what I can gleen from them regarding mothers fathers side as I have no more than a fee names and places less than 100 years oldbut nothing confirmed in census records or anything yet ... It's only been like 3 days!!!! I'm not stressing it yet ;-) I'm going to join one o them there ancestry sites, not sure which one yet, looking like their are all approx £100 for the year. Until then I shall be making many many more scribbles in my books ... It all became to confusing with one book, so am writing in 2, helps me spread myself about and piss off the kids :-) In other news I have just received call from a southern asian gentleman calling himself Adam of the home energy something or other, he was not too sure what to say when I called him a liar and that his name wasn't Adam, I asked him if he was Jewish or any son of Abraham ... He wasn't keen on answering ... Funnily enough I feel the same about cold callers.