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.

Disaster

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.

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.

Heart failure revisited!!

I have a distinct sense of dejavu going on as I sit here in bed at the general hospital where my bad luck seems to be continuing.

I went on leave last Saturday and finally got my hair done and then along with my parents we went to see Bens show throughout which I had a feeling that all was not well with him, my feelings were correct as he was not well and had thrown up mid show I took my brave soldier home and put him to bed. Sunday morning he said he felt a bit better and demolished fried eggs on toast and felt ok to go to work (filming a dance show) I decided to spend the day at my parents rather than on my own after I had met up with the girlies for a coffee in the morning. I had a fab time catching up with them and was a great start to my day.
After lunch mom and I went over to hobby craft but while there I began to feel unwell really sick and light headed we left and went back to my house to collect stuff to go back to unit after dinner that night, however when I got there I threw up and felt rotten and then continued throwing up till about 8.30pm.

In light of this the unit would not have me back until 72 hours from the last symptom and so I was stuck without any meal plan or portioning guidelines and in the whole time I didn't get a single phone call to enquire how I was or if I needed any help or support despite the fact I have been there for nearly six months and had only had one leave when main meals were involved and they were planed down to the spoon size. That aside I managed with much support from Ben and my parents to muddle through basing food round the things we new how to portion.

During this time my abdomen remained swollen and the weight I had initially lost taking the water tablets was going back on, I was finding it increasingly difficult to sleep again due to not been able to breath lying down and constantly coughing along with the pain that has now moved from the hip in to my back. I was so distressed that had I have been more selfish I would have topped myself as it was all too much to take.

In light of this Ben arranged for me to see the doctor from the unit in outpatients on Tuesday afternoon as Ben was not happy that nothing appeared to be being looked at and felt that I was just at a feeding farm without any physical or psychological help and support.

The doctor was good but didn't manage to allay my fears that my abdomen is going to return back to how it was and said he couldn't increase the water tablets without speaking to the medical team at the general as they were prescribed by a consultant, I stressed this needed to be done then as they were clearly not working. I was asked on the Wednesday to keep a record of urine input and output which was let's say interesting, weeing in to a jug!!!! He had also arranged for a ct scan to happen on Friday at 2pm to see what was happening in my heart and lungs as it would give a clearer picture than the X-ray and ultrasound.

I returned to the unit on Thursday morning after breakfast with much coercion from Ben as I really didn't see any point and it was already a really hard day for me as it was the three year anniversary of my nans death. As soon as I got there I saw the doctor who assured me he would contact the cardiologist and get some advice regarding medication. I waited all day and then the doctor said he had spoken to the secretary for the cardiologist who was unable to get me an earlier appointment than the one I have for April and so he had emailed him directly for advice. Unfortunately the advice was that I would need to be seen by the medical team for further scans and X-rays and the quickest way was to send me back to CDU to be assessed. So at 10.45pm on Thursday Ben and I were sat waiting in CDU for what was set to be a long night. My goodness it really was long Ben eventually left at about 6am when they let me sleep on a examination bed in a treatment room for an hour, next thing I new was breakfast and then back in to the waiting room for a further three hours. Finally at about 11.45am they had a bed for me on a ward.

I have a room on my own with an en-suite which is quite nice and has a good view. The unit sent staff over to be with me which was helpful when it came to lunch time as they really helped me through how much to eat.

I saw the cardiologist who said he was increasing the water tablets and would be looking to increase the heart meds next week along with introducing another one. He advised i would have further blood tests as well as the scan at 2pm. The heart failure nurse came to see me and went through a load of do's and dont's including decreasing my fluid intake while I have the oedema so it was good that a nurse from the unit was here to hear this info. They also said I would need to be weighed daily to keep an eye on weight gain or loss, not sure how I feel about this yet.

Ben came in about 4.30pm which was good. The unit agreed I didn't have to have staff with me constantly and that they would just arrange for people to be with me for main meals which is really all I need and meant that once I had eaten dinner Ben and I could enjoy the visit without an audience.

Unfortunately Ben and I had tickets to see a show tonight which I don't think I will be able to go to as it looks like I'm here for at least the weekend especially as the scan I was having at 2pm yesterday has still not actually happened yet. It's not ideal and I would much prefer to be at home on leave but I also can't go on like this I just want it all sorting so my abdomen can go back down, I can breath again and just get back on track with beating my eating disorder.

That aside however I may be leaving here in a police car at this rate because if the man who has been playing the same three songs since 6.50am this morning doesn't turn them off I will be killing him!!

True or false

Arghhh my head is all over the place I am so confused, angry, scared and frustrated. The hospital started me on heart medication and water tablets to get rid of the fluid round my lungs, abdomen and other oedema and advised that the rapid weight gain was more than likely due to the water retention. I was relieved on Monday to see that i lost just over a kilo and a half but was still really worried that my face and stomach remained swollen but was reassured by doctors that it would just take a while to go. Imagine my dismay this morning when I got on the scales and all I had lost was 0.2kg despite the fact that they have me on fluid balance and can tell me that more is coming out than is going in so fluid is leaving my body. I am now petrified that the weight remaining is actual weight gain despite not changing my diet since December and my stomach and face have just got this big! The worse thing is that no one knows and all I can do is wait but I am so stressed its untrue.

I feel like I'm in a complete limbo as while my weight remains a mystery I can't really move forward and so I am stuck just existing here day to day waiting scared of the complete unknown.

Good news however is that I have got leave at the weekend which I am both looking forward to and dreading at the same time. It will be the first time (apart from Christmas) that I will be out for two main meals and even though I have spent five months going on about all the things I really want to eat now it comes to planning meals I can't think of anything!!

Due to bens work commitments I will be eating at my parents rather than alone so have talked ideas through with them and I'm just hoping the dietician will be here today to go over portion sizes and obviously to discuss my weight.

I am finally getting my hair done on Saturday and then going to see ben in his show on the night. Sunday morning I am meeting the girls for coffee which I am really excited about as I have not seen them since Xmas and have missed them loads. My concern for all of the above is what people will think I look like as usual but especially now I am swollen and puffy especially the face.

Oh well fear or no fear what can I do except grit my teeth, feel the fear and do it anyway.

It's all gone a bit wrong!!

So lets see shall we what have I learned since my last blog? Falling and dislocating your hip is excruciatingly painful not just at the time but for much time after especially when you start trying to walk on crutches.

My body has a mind of its own somehow managing to allow me to put on over half a stone in a week and a half without changing my diet in any way (more weight than I managed to gain the entire time I was on bed rest).

Finally I have learned heart attacks can seemingly happen without all the histrionics that casualty and other such programmes would have you believe are involved and that seemingly harmless pains in the chest and a few palpitations are actually a heart attack!!

An explanation perhaps, following my fall my stomach swelled up and I put on as I said over half a stone something that both the dietician and doctor said could not possibly be "real" weight but must be caused by swelling from the fall and constipation. I am completely distressed by the weight gain and the size of my stomach and that no one seemed to really be able to explain why. I have been taking lactulose to ease the constipation and yet still my stomach remained swollen and the weight continued to go up. Finally on Friday, a week after the fall and me telling them of my swelling the doctor did a blood and urine test which found a high level of protein in the urine but not so much in the blood, having contacted the renal team for advice it was decided to repeat the tests and then liaise with them once the results were back. Friday night they should have been back and by Monday I had not heard a thing and had come to the end of my tether. Deciding I could no longer cope and the only way I could deal with the situation would be to go home not eat and loose the weight and wait till my stomach went down so I demanded to go home. Ben and my dad came over as I was so distressed and it was decided that I should stay the night and wait to see the doctor the next day and have some official leave put in place, dubiously I agreed but then spent all of Tuesday in a distressed state waiting for answers. Finally the doctor seemed to take me seriously and arranged for me to go to the general hospital on Wednesday for an ultrasound and X-ray of my abdomen, he also agreed for me to go home for the night and then return to the unit after my tests.

The ultrasound showed no reason for the swelling of my stomach much to my dismay but did however show that I had fluid round my lungs which would explain why I had been so wheezy despite having taken a weeks worth of antibiotics for a suspected chest infection. They proceeded to X-ray my abdomen but also my lungs after which I was told I needed to go to A&E to be seen, luckily the doctor from the unit had called and spoken to the consultant who had agreed for me to be seen in CDU in order for me to avoid a three hour wait. I saw the registrar who said that the fluid was not severe enough to warrant aspirating it for which I was so happy as the thought of a needle in between the ribs was not filling me with joy. He explained that it was due to the heart failure and that is why I had such bad edema but they would prescribe Water tablets and the ace inhibitors the cardiologist had prescribed. He did an ECG and some blood tests and said to wait round for the results which would be about two to three hours, I explained my situation and he allowed me to return to the unit to have dinner and then back to them which I did.
To cut short what was an exceptionally long day and night for my dad and I and then for Ben and my mom blood tests revealed that I had a particular raise in a protein that would indicate a trauma to the heart and so the test would need to be repeated after six hours which it was, just after 12.20pm they advised the level had gone up again which would indicate that I had had a heart attack and would need to stay in over night in order to be monitored and then see the cardiologist in the morning.

So here I am sat in the general waiting I have had all of about 30 minutes sleep and am now getting so anxious waiting for breakfast. Ben was amazing liaising with the unit to get me the correct size milk jug and cup to measure the cereal and made sure all the staff were aware of my situation he must have been to and from the unit about five times finally at around 3.30am in order to get me some bread as the hospital don't do toast as someone nearly set the ward on fire!!

I am hoping the cardiologist will come this morning and allow me to return to the unit and that the tablets will get rid of all the excess water and that my swollen stomach will go down and the weight come off back to it level prior to all this mess and I can continue working on my eating disorder to make sure my heart can get stronger so that neither me or my family have to go through the trauma of this ever again.

Dislocation

Oh my stars as if this illness wasn't hard enough on leave for the dentist on Friday I decide that it would be a simply wonderful idea to throw my self on the floor, lie on solid ice for forty minutes and dislocate my hip in the process, genius!! Several painful hours in a&e and i was given the ok to go home as nothing was broken and the hip was back in place one small problem err I can't move!!! All I can say is that it is typical of this hospital but for fear of a liable case I shall not mention names.

I finally got returned to the unit via patient transfer and was wheeled in still flat on a stretchier the transfer to my bed was agony and the whole experience was made significantly worse by one particular staff nurse who couldn't wait to get me packed off to the general so they could better manage my needs, I pointed out that I would not be going and I would transfer from bed to wheelchair to use the bathroom even if the pain was horrific as I had worked too hard to go to the general and have no structured eating plan in place and so undo all my work. The sentiment was echoed by Ben and my parents and they all agreed that the woman is, to be honest and pardoning my language, a heinous bitch!!

Anyway all my weekend leave was cancelled so I didn't get my hair done and now am unable to have it done for three weeks as rather selfishly my hairdresser is getting married and going on honeymoon for two weeks typical!! I also missed my friends party which I had been psyching myself up for for several weeks as I would see friends I hadn't seen since summer last year.

All the pain and disappointment though was soon to be replaced by something far far worse. Over the weekend my stomach had become very swollen and bloated to the point that even the staff couldn't disagree with me and so when Monday came along I was terrified for two reasons, the first was how I would actually be able to get on the scales and the second how much weight I would have put on having been stuck on a bed but my god nothing could have prepared me for the reality. I somehow managed to get on the scales although I think most of the weight went through one leg (which my dad said will change the reading but I don't really see how this can be true) and I had put on almost half a stone in four days, hysterical I think would best describe the reaction. The staff and dietician have said that there is no way it can be a true weight and must be due to swelling and constipation (a wonderful side effect of the pain killers they had me on) but I am not consoled and I am terrified that my stomach is going to stay swollen and the weight will not go back down, worse still that tomorrow it will go up again. The dilemma is now do I get weighed and freak out if it goes up again or refuse and then worry what it's doing either way I don't win but I am still terrified and very confused.