Another step

So I finally left my home on the ward to face the real world for a while. Well real world been a week in Ibiza which was amazing, stressful at times and although there were several times when I felt overwhelmed by it all I still carried on and had a fab holiday. Now I'm back to reality and I have started daycare which is 8am till 4pm Monday to Friday so far its going ok it's a lot different to the unit but I think I needed that, it's far more relaxed and certainly less intense.
I had a dreaded birthday yesterday which I'm not great with at the best of times as I always feel like its another year of my life I've wasted having an eating disorder, however while there were certainly elements of that thinking yesterday this year at least I can hold my hands up honestly and say I'm fighting it and making progress on my journey.
I took a huge step last night and arranged to go out for a meal not just with my parents but also with several very good friends I admit I was terrified at the thought of eating with them but I never the less faced my fear and had a really good time. I went back to my friends house and watched a DVD and it was lovely to feel special on my birthday and that was down to them. I did have a wobble where I got upset about Ben, its the first birthday in 12 years without him or even a card and that was hard to face. I am still missing him desperately and trying to find a way through but it is not an easy task. However I have some amazing friends who are supporting and loving me and I couldn't ask for more.
So this Saturday I'm really challenging myself and I'm holding a BBQ to which I have invited lots of people and I am raising money for Macmillan and also for the unit which was my home for almost nine months, just my way of giving something back to them for giving me back my life. The second big challenge of the day however will be me going back to work, I will be working just Saturdays for the time being and while I am excited to be going back I am terrified. I'm scared on several levels, what people will say to me about how I look, scared about not remembering what to do or finding that everything's changed and scared of eating not just lunch but also snacks. Oh well guess I will just have to continue as I have been, feeling the fear and doing it anyway.

An end in sight

I can't believe it the last few weeks have been hell and life has felt like it may as well have ended and while I am still struggling to comprehend what has happened and loosing Ben has devastated me I have somehow managed to keep going.
In actual fact I have turned a bit of a corner powered through and started to take back my life, I started by seeing my wonderful friends who have and continue to be a power of strength and truly amazing taking it a step further I have bitten the bullet and joined a local musical society which I was terrified at doing as I didn't know anyone but the first night went well and everyone seemed really friendly, it didn't stop there though I have also taken up ballroom, salsa and Latin American dance classes which was so much fun and gentle enough as not to tip the balance with my weight or affect my heart.

Last night I went to a BBQ and film night at a friends house and managed to eat with people without purging and these were mostly people I didn't know, I even managed a glass of wine or 2 (alright it was the entire bottle but who's counting!) I admit I felt uncomfortable and quite scared and anxious but they were all wonderful and I hope to see much more of them and get myself involved (if they'll have me!) in more things.

Food wise things are going quite well I'm still having my wobbles and occasional purge but it a million times better than it was and I'm learning about portion sizes. Diet wise it is so much better having been so terrified I would never be able to eat a 'normal' diet I am pleased to say I now have full portions for all meals, three snacks and a pudding and even more glad that it didn't make my weight rocket out of control as I had feared.
I even managed to have my first Chinese takeaway at the weekend after a practice one on the unit, I was terrified but really enjoyed it. My next challenge will be a meal out, maybe this weekend and to make the challenge even bigger I might have steak and chips!

So things seem to be getting there putting the Ben situation aside and I had good news last week I have been given a discharge date to leave inpatient care and to progress on to day care, I am shocked and terrified in case it all goes wrong but at the same time I don't think I will ever really feel ready but I am so proud that through all the nightmares I have come up against I am still here seen it through to the end and not discharged myself. So here's to the 22nd may oh and the week in Ibiza on the 24th may to celebrate.

Destroyed!

I feel like my world has been destroyed and the one thing I was sure of has been ripped away.

I went on leave on Wednesday and went home to talk to Ben as I feared the outcome was not what I wanted but what I had feared, we talked, shouted, cried, and then fell asleep in each others arms, it was at that point that I thought we had a chance, I was wrong. Ben told me that he was going to Devon for a couple of days to join his parents who were there on holiday as he needed space to think and get his head straight but if I asked him for a decision there and then I wouldn't like the answer.

I was distraught so I called a taxi as I couldn't face watching him drive away, I spent the next couple of days at mom and dads inconsolable and very confused. Ben txt me several times the first to say he was going away to make sure he was staying with me for the right reasons and not leaving for the wrong! This just confused me even more than I was! There were several other texts each one ended with "I love you xx" I felt like maybe there was hope that a break away would recharge him and we would be ok.

Yet again I was wrong, he returned on Saturday and after a lovely afternoon with my girlfriends they dropped me back at the house. I was so scared I felt like my heart was in my mouth sick and terrified of what he would say.

We tiptoed about for the first five minutes or so making general conversation about this and that until he announced that he couldn't drag it on any longer and wanted out. It's fair to say my upset turned to anger and I yelled at him that he was a lier that he didn't love me because if he did he wouldn't be walking away. I told him the day we got married was a complete lie as his vows clearly meant nothing in sickness and in health till death us part well they clearly mean nothing to him and therefore I can only assume he is a lier. I tried to smash the wedding picture on the wall but Ben took it off me so I removed another and smashed it and told him by the time I got back I wanted him gone at that point I left walked round the corner and collapsed on to the floor in an inconsolable state and waited for mom to get me.

Mom bundled me in to the car and we got half way to hers and I said I wanted to go back, part of me hoped he would be there and have decided after all I had said that he did love me and couldn't be without me I was wrong he had gone and his actions clearly spoke volumes to me what had he taken? The computer and his new camera! Proved to me what his priorities are.

So I have spent the last week inconsolably crying, feeling destroyed and confused. Despite me asking several times for an explanation as to why and why now he refuses to give me one. The only thing he txt me was that it would never have been a good time but now I'm stronger I will hopefully be more able to cope!! Cheers Ben so I've picked myself up started to make real progress and then you pull the rug from underneath me and knock me back down.

As he refuses to give me the answers I need I am left to only make assumptions, I have come to the conclusion that me getting better threatened the life he had not only got while I was in hospital but the life he had had for a year or so prior to my admission. I have never stopped him doing anything I stood by him when he wanted to start his own business despite us being financially crippled and almost loosing the house because it was his dream and was determined to make a go of it and I had faith in him, he has continued to be part of his theatre groups and gone out with friends on nights out often not even coming home. Through all of this I have stood by never telling him he couldn't do them and continued to cook and clean and not really asking anything from him in return. His life style was not massively affected by me being in hospital he continued to do all the things he did before and I always told him to put himself and work first and that I would understand if he couldn't come and visit, I even told him not to come at weekends so he had time for himself. Well what a bloody mistake that was over the last few months he has come less and less to the point that even some members of staff have commented on him not being here, he has gone out more and more and continued to post photos of him out and about drinking and cavorting with friends without a thought to how they might make me feel but I put up with it as I thought that I was doing all I could to ensure we could enjoy things together. He has effectively led a single mans life but with a wife who would cook and clean and not really ask for anything in return. The time that I ask for something and he decides he now can't cope and so buggers off!!
I now think that he realised that with me getting better I would want to be involved in his life wanting to go out with him and spend time as a couple and this would interfere with his own social life which I'm not part of. I did tell him this and asked him why he didn't invite me he said that I never wanted to go or couldn't face people which is true but I have been making changes and I pointed out how would he know if he didn't ask. The point is he didn't ask and I foolishly didn't just invite myself or tell him not to go so we could do stuff together I suppose I was too scared to stop him doing stuff incase he resented me for it how wrong was I.

So what now? In truth I have no idea it is still so very raw and I am desperately hurt, angry, confused and more importantly heart broken. Ben is the love of my life but more than that I thought he was my soul mate and best friend but a wise man told me (my dad) someone can only be a soul mate if they feel the same. Until now I thought he did feel the same and that he wanted the future we planned together, the future I've been fighting seven months for us to have.

It's a mess were married, have a house and mortgage together, debts together and most importantly a cat!! What happens now I really don't know where I live and how the hell I start rebuilding a life I don't know. I didn't think at almost 32 I would be starting all over again, all I have known for the last 12 years is Ben every happy memory is of him and my reason for living has been him and I'm not sure how to face a future without him, until this last week I have not gone a single day in 12 years without speaking to him and I have gone from that to a future when I never see or speak to him again. I'm so scared and don't have any idea what to do, I am just so thankful I have truly amazing friends and family who are supporting, loving and guiding me through this who without I would not be here.

When dreams become nightmares and nightmares become reality!!

I think it would be true to say that my world collapsed on Saturday, everything I believed in, felt secure with was destroyed in a few minutes and left me feeling like i was free falling without a parachute just waiting to hit the ground.

After a few very difficult weeks recently with one thing and another I finally felt over the last couple that I had turned a corner, I had settled back in to unit life with a renewed vigour to fight this illness and to finally be strong and well. I have been looking at my future and reevaluating my options and thinking about what I want to do, even thinking about new activities I think I might enjoy and even taking steps to find out where I could try them.

The most important step for me however was my ignited passion to make a better future and relationship for Ben and I. I realised just how hard my illness has been on him as well as me and how much of a real relationship it has robbed us both of and how much I want if back.
I find it so difficult to be physically close as I'm so uncomfortable in my own body I can't begin to comprehend why anyone would want to touch or be close to it let alone think its in any way attractive, it's because of this that I have avoided too much physical contact but I realise this must have felt like I was pushing Ben away and probably left him feeling unloved, unwanted and possibly like I didn't find him attractive, in fact nothing could be farther from the truth. I want nothing more than to be close to him and to be able to show him that closeness. So the last couple of weeks I have really tried to make steps to improve our relationship not leaps I grant you but steps never the less but as some famous bloke once said "one small step for man one giant leap for mankind" we'll I guess the same goes for me.

I have tried to spend as much time with Ben as I can, pushing anorexic thoughts as far away as possible so that where I can all my attention has been on Ben. I have taken steps to get closer physically sitting next to him on the sofa rather than on the other sofa cuddling and generally showing more affection. We have gone out together to things that I have not only suggested but also arranged finally taking a more equal and active part in the relationship instead of being looked after and Ben having to take on the role of carer rather than husband. It's fair to say I felt better about stuff even when things were hard or weight stressed me out at least I felt as a couple we were getting stronger and I was getting stronger and that I was finally fighting for me as well as for others. I realised there is no me but only a we as in my mind Ben and I are one only now were both fighting rather than Ben fighting on his own.

So imagine my distress, confusion, sadness and complete helplessness when Ben told me on Saturday that he didn't think we could have the future we wanted and we should split up! It came following a talk about the steps I had been taking and me asking if he ever felt like he couldn't take anymore and wanted to leave. He explained that if he had wanted to go he would have done after all I have told him many times that I would understand if he wanted to walk away and get the better life he so deserved but he has always said that I am his life and he wanted to spend it with me. He explained how hard the last 18 months have been but realised the steps I had been taking to make us stronger and then in what felt like a blink of an eye he was telling me he didn't think we had a future and he wanted to split! I've never actually been stabbed but I imagine it couldn't be more painful that the feeling of those words cutting straight through me like a knife, the words resonating in my head like like I've knocked the repeat button and am now unable up turn it off.

Distressed doesn't even come close to how I felt and indeed still feel. I don't think I have ever gone through such a variety of emotions in a short space of time first came a calm almost accepting resolve quickly followed by immense sadness, tears, distress, begging and then anger. Then jumbling together to create an emotional wreck of a human who was unable to think, comprehend or feel.

I begged him to reconsider pointing out I had really started to make changes and that I was stronger in myself and was prepared to fight for us to be ok and he didn't need to fight for the two of us anymore and I could fight for the both of us.

Ben went out as he said he needed to think and so I too went out and ended up walking for three and a half miles till I ended up at a pub with a vodka shot in one hand and a cigarette in the other, night good considering I hadn't smoked since the smoking ban came in but it just felt right in a world where nothing else did.

By the time I returned Ben told me he thought we were worth fighting for but he needed to get his head straight. Sunday was hard we both put on our fake exteriors and went to gadget show live as planned.

Monday morning however as I was about to leave to go back to the unit I felt such unease that if I went back I would be sealing the date of our relationship and didn't know what to do. I explained to ben that I was terrified if I went that he would change his mind again and say it was over. In the end I couldn't face going back and being alone and so I stopped at mom and dads for some tlc returning to the unit yesterday morning.

The unit was horrid as I just couldn't face the constant questioning if I was ok and ended up sleeping much of the day just to get through.

So here I am I am hoping for open leave for a week from today to try to get something sorted and the plan is to go home today to talk things through. I am so scared that this talk will just lead to the same conclusion as last time and I will be left with nothing but fear, misery and anger. All I am sure of is that even though I might have nothing or no one to go out to I will not give up in my personal journey to beat this illness as I've come too far and worked too hard to throw it away.

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.