Tuesday, 26 March 2013

A few steps forward

Finally took a tentative step last week by finally going from introductory portions at lunch to normal portions. I started last Thursday as it was sandwiches at lunch I could just have a packet of crisps to make it a normal portion I also thought it would be easier at lunch as I could just do the same on my leave at the weekend. Thursday went ok but Friday lunch was a cooked meal of fish goujons, mash and veg and when it came it really freaked me out as it was huge plus the fish was battered and not breaded as it had stated on the menu and it took me several attempts to make a start, however I did get through it with support and reassurance from staff.

I was lucky to get any support as to be honest the ward has been a crazy place over the last couple of weeks and there have not been enough staff members to give the support and help to all the patients particularly as one patient is on two to one obs and constantly sets the alarms off. The staff have mostly been with this patient leaving the rest of us feeling completely unimportant and unsupported. We raised the issue in community meeting but the staff nurse said she was sorry and understood I politely pointed out I didn't want an apology and false platitudes what I wanted was an answer as to what they were doing to rectify the situation, but as per usual we were told they would raise our comments and concerns with management, wonderful!! Luckily we have all been really supportive of each other.

So I went on leave again from Friday till Monday this week as I was at the dentist yesterday morning. It was far more successful than the last two weeks and I really tried to have more routine with my eating meaning that I didn't leave massive gaps between meals and snacks and had them at more regular intervals in the hope this would prevent hunger kicking in causing me to pick on food and then purge it. On a whole it went ok a few wobbles and panics but ok.

Can't believe its ward round again already I have asked for Friday day as well as usual weekend leave this week as its my sisters birthday and I wanted to take her shopping and to the cinema fingers crossed I will get it and that I have another reasonable weekend.

Wednesday, 13 March 2013


In a word that would describe my weekend leave it did not go well and made me feel like I have not moved forward at all except for getting fatter!!

Saturday Ben and I were going to test drive a car with mom, well Ben was there to advise I was there to look at the beautiful beetle I saw the week before, then after lunch we were going to the cinema. Disaster number one was that it took longer at the car garage than anticipated which was fine but I then freaked out and said I couldn't eat a sandwich in the car, despite the fact I could before and so we ended up not having time to go to the cinema. I know deep down the reason I couldn't do it was incase I freaked out and decided I couldn't keep it and needed to vomit so it was just like before, completely ruining my day and dictating what I was able to do.

We ended up going home after lunch at moms and watching a film which in itself was nice but not really what either of us had wanted to do.
Ben went out to a celebration meal on the evening and so I went to moms for dinner. I made a lasagne but panicked when putting it out with mom that the portion was too big and so made it smaller. I managed it ok but disaster struck after when I couldn't stop myself picking at more of it which caused me to freak out and make myself sick. In hindsight I think the original portion size was better.

So that wrote Saturday off as pretty much ruined but I hoped Sunday would be better, alas it wasn't!

As it was Mother's Day I planned to make a small buffet lunch for everyone which while I made it it went ok and I resisted the urge to eat anything but that wasn't the case afterwards and yet again I found myself picking, panicking and purging. I stayed for the day as Ben went over to see his mom and have dinner with her on the night while I had dinner with mom. Dinner itself was ok and I had a small pudding instead of an afternoon snack and although I had to question the portion size several times it went ok. Same old though I couldn't seem to stop myself picking at bits after not a binge but enough to freak me out so I didn't really know how much I had eaten and so inevitably had to purge. Went back to the unit for 9pm and for the first time in a long time was glad to be back so I couldn't possibly have more food than normal.

I explained to my family and the nursing team what had happened and said that possibly the introductory portion size is not really enough and my body is causing me to pick because it needs more than its getting, of course purging for the last couple of weeks more frequently has not really helped.

So a decision has been made, I have to go a full week without purging so my body can settle down slightly so i have a real idea what my weight is doing and providing all stays stable I will take the plunge and go to normal portions which is both exciting and terrifying me.

So far I have done two and a half days and touch wood weight has not done much, all I am worried about is getting through the weekend when there will be food around. I should hopefully see a dietician prior to then so I can make a fixed plan of what and how much I am going to eat and fingers crossed we have a better weekend.

Wednesday, 6 March 2013

Two steps forward, twenty five back!!!!

I feel like everything has gone completely tits up nothing has gone right since my fall.

Heart diagnosis is not great and I believe the technical term for the state of my heart would be knackered!! It is only working at between 10 & 20% of what it should be and I have now had to start taking another two tablets as well as increasing the dose of another two. That aside the ct scan showed that the fluid has finally gone from around my heart and lungs and there is no fluid in my abdomen which is all good. Well good except for the fact that my abdomen is still distended and my weight has still not come back down.

I finally got discharged from the general on Friday night as they were happy the scans were clear and could find no medical reason for the distended abdomen and they even said it wasn't swollen despite nursing staff agreeing it was. I was adamant I would not go back to the unit as I felt like I just couldn't trust them they promised me they would not allow my weight to increase rapidly and that's exactly what has happened and when questioned they just say they don't know why.

Friday night was horrific I told the unit I was leaving but agreed to go back Monday to speak to the doctor and nursing team. Ben and I had a really bad night with lots and lots of tears and upset which continued for me across the weekend as I was certain I didn't trust the unit enough to go back and would therefore have to get my stomach and weight to go down my way. Unfortunately my way is to vomit after eating which I had started to do in the general hospital because I was so scared about the weight gain and swollen stomach and worrying I was eating too much and although I told people I was back in the cycle and am now terrified to break it again as my weight is going up enough doing it so what the hell will it do if I stop.

Despite a difficult weekend which was spent in the most at my parents due to Ben having prior commitments I did my best to keep food down as I know that vomiting won't actually make anything better it will just screw my body up more and my heart probably wouldn't stand it again. But I am too scared to eat and keep it all because of my weight and stomach.

Ben called the unit Monday morning and arranged for us and my parents to go in to see the nursing team and the dietician at 2.30pm quite frankly it was a disaster no one seemed to have any answers and the dietician said she had never experienced this kind of weight gain but also had never treated someone who had been at such a low weight as I was. Never the less hearing the dietician say she has no clue what's going on doesn't really fill you with confidence to stay. The meeting with the doctor didn't go any better and I ended up walking out of that too. I managed to leave the unit all together finally proving that no locked doors would stop me if I was determined to go and I went over to the general to get a coffee. Ben came over and said that the doctor had informed them that the ultrasound scans had shown something I had not been informed of and that was I have excess air in the bowels (no wonder I can fart for England!!)and this could explain some of the stomach distention and he would be referring me to see a gastroenterologist.

I agreed after a lengthy conversation with my named nurse that I would return to the unit at 10am yesterday and give it a couple of weeks to see what happens, see if my weight settles and if I can get back on track with eating.

I kept to my word and returned to the unit yesterday and along with my parents had a meeting with the consultant which was not all particularly helpful and he said he would not see any reason to have me referred to a gastroenterologist despite me being told this the day before, I did point this out and was told he was the consultant and the other doctor was his junior I suggested that in future in may be advisable for them to communicate with each other then rather than telling patients two conflicting things!!

I have requested fixed leave so I always get from Friday night till Sunday night at home as long as there is no change physical health wise which he didn't seem to adverse to but did say it would be a team decision which isn't true as he makes the final decision no matter what he says. I also pointed out that I felt I had been given no real help with regards to body image issues and asked for a fixed plan of action to be put in place to address this.

I also saw the junior doctor who is still adamant he is referring me to the gastroenterologist and fingers crossed he will do that today but I will wait and see what happens when I get my ward round feed back later.

So that's been the last week so quite crap and stressful for all involved, I know Ben and my parents are happier now I'm back here as they think this is the only place I stand a fighting chance of getting well to my mind though I am still unconvinced but have agreed to give it a couple of weeks to see what happens and I will keep to that promise.