One Christmas at a Time...

Christmas. If you had have asked me prior to my illness developing I would have said: “My favourite time of the year! Dark cosy nights; surrounded by family and friends; everybody laughing and full of happiness. I cannot wait!”  However, my elation for this season slowly drifted away over the past few years. Instead of being preoccupied with socialising and enjoying the festivities, I found myself becoming overwhelmed with dread, anxiety and fear. The thought of a buffet at a family friends house, the sight of a box of chocolates or the smell of Christmas dinner made my stomach churn. What do I do? How do I avoid it? What if somebody notices? I was constantly analysing every situation to see if there was a way that I could either manipulate it or avoid it. I started earlier in the year by dropping hints about not liking certain things anymore so that it wasn’t as obvious when I didn’t eat it over the festive period. When the social eating situations arrived I would arrange the food on my plate to make it look like I was eating plenty, but in reality I was not. Again, my eating disorder was ruling my entire life, and completely ruining what should be the happiest times of my life; but this year was going to be different.

Being discharged from hospital on 20^th November 2015, I was determined to make the most of this Christmas. My whole perspective on life had changed, and I did not want to miss out on any special moments that I had with my incredible family. I started as I meant to go on by asking mum if I could have a chocolate advent calendar, and to be honest I don’t know who was more surprised by this request, Mum or me! My own voice was getting louder and it was no longer being overshadowed with another that was trying to depict what I should or shouldn’t do. I felt a sense of strength and empowerment that I was recognising my own needs and desires, and not only that, I was saying them aloud. I am not going to lie and say that there were no negative thoughts causing havoc in my mind, but I had made a decision for me, by me.

Christmas Eve is a hugely special day for me. Even though I see my Dad every day, Christmas Eve is kind of like our day together. We spend the entire time preparing all of the food for Christmas Day. Previously an anxiety provoking situation, this year I couldn’t wait to be able to rekindle the happiness that this day used to bring to me. We discussed how things were going to be prepared for the meal and we agreed that certain foods would be cooked in a way that I was comfortable with. Some people may think that this was my anorexia manipulating another situation again, but it wasn’t. I wanted to be able to try things again but without being overwhelmed with negative thoughts, and so we came to a compromise with a few of the ingredients. I also asked if I could prepare a pudding, because I don’t like trifle, so that I wasn’t missing out on this part of the meal. Again, I was using skills that I had learnt in hospital about communicating my issues to reduce my anxiety and it worked so well for me. The day was an absolute joy, but I still had one thing that I had left to challenge, a buffet at a family friends house.

Firstly, I want to thank the team at Evolve for preparing me for this social activity. During the previous week, at the day patient service we prepared and ate our own Christmas buffet with all of the staff. It was the perfect opportunity to be able to determine a plan of action for the Christmas Eve event, and also to discuss any issues I had, so that they could be resolved before I attended the social gathering. It definitely eased my nerves and complex thoughts, so much so that I was actually really looking forward to the occasion and being able to prove to everyone just how far I had come.

When we arrived, the buffet was being prepared and I could see and smell all of the food at the far end of the room. Yes, I started to question what I was about to do, but no, I did not run away. Mum recognised my moment of doubt and placed her hand on my back, which instantly comforted me, knowing that I had her support. I was talking to friends that I hadn’t seen all year and it was lovely. In fact the thoughts of the buffet slowly started to take a back seat, and instead I was laughing and listening attentively to the stories bouncing around the room. However, I do still find that I get frustrated in these situations, because I want to be ‘normal’ like everyone else; not being concerned that there is food all around the room, or the fact that we will be about to make our own decisions on what goes on our plate in just a few moments time, not adhering to food rules that have been established in our minds. But I remind myself that each year it will get easier, and the more I challenge things, the lesser impact this disorder will have on my life. With my plan of action that I formulated at Evolve in my mind, I approached the buffet alongside everybody else. I found that if I chose things that were slightly more difficult to make decisions on first, and then I could relax as I finished the route around the table. I also took this approach when I was eating the food, although I did really surprise myself with how comfortable I was with the situation! I pushed myself to challenge these rules that I have in my mind, and with no labels in sight this was made so much easier. I know that labels are something I really do need to work on, but I am not putting too much pressure on myself to tackle every challenge at once. I felt really positive about the progress I had made, particularly in terms of my behaviours surrounding the cutting and eating of food, because I certainly wouldn’t have been able to eat the plate of food on my lap, if I hadn’t have knocked all those habits on the head with the help of the staff at hospital. The whole night was a success, and I was so happy to be surrounded by familiar faces, enjoying games and laughter, it made all the past few months of pain and struggles so worthwhile. However, the big day was just around the corner.

Christmas Day was quite an emotional day for me. As I have previously mentioned, my perspective on life has altered after what I have been through this year, and so to be spending a day with the most important people to me was so special. It petrifies me to think of what the scenario would have been if I hadn’t have gone into hospital at that crucial time, and that was in the forefront of my mind for the entire day as I was faced with several challenges. As I put on my novelty Christmas jumper I was reminded that this time of year should not be associated with fear or anxiety, but fun and merriment. The family started to arrive and I was greeted with the most wonderful news; my auntie and her partner had gotten engaged! They looked so happy together, and I started to think about my own future; how much I want to be able to enjoy and feel comfortable in somebody else’s company, without the feelings of negativity about my body. This motivation spurred me on to tackle the wonderful Christmas dinner that Dad had slaved away preparing all day. I chose options that I would have ordinarily refrained from, and used my dietetic knowledge that I have gained throughout my time in treatment to make sure I was getting every element of nutrition I needed, without fretting about the need to weigh or measure. I did get mum and dad to check my plate for reassurance that I had got everything I needed, but also to eliminate the worry that I had got too much; I still need this encouragement, which I am not embarrassed about in the slightest, it is my recovery journey. Throughout the day we played games including pie face, which was hilarious. I think you can tell how far you are in your recovery when one moment you cannot even look at cream, and the next you are happy to risk the possibility of it being splattered across your face! Yes, it did happen to me and yes, I did have a little taste! I finally felt like I was myself again, the actual me, and those moments in recovery are absolutely invaluable. I enjoyed a few of the chocolates from the celebration box as we competed in a quiz, as well as eating when nobody else was at the end of the evening to make sure I was sticking to my weight restoration plan.

I have to add that I am so incredibly fortunate to have an amazing family that doesn’t question anything that I have to do, or bat an eyelid if I am sat eating a bowl of cereal to finish up my pint of milk. I think this has a lot to do with how open I have been about my struggles and necessities for my weight restoration and recovery. It makes my life so much easier, and probably theirs too, because they aren’t seeking answers from my parents or worried about what they say in front of me. I learnt so much from this Christmas that I am going to continue to use in my progressive recovery. I want to thank everybody that I saw over this festive period for being supportive, non-judgmental and accepting of my illness. Although it wasn’t without its struggles, the entire time was such a pleasure and a Christmas I will never forget.

A Mother's Perspective...

I would not wish my worst enemy to go through what Jess has gone through in the last year.  Reading her blog people may think it was obvious there was a problem, but it is a very slow process where little habits became the norm and it is not until it is too late that you realise there is a problem.

We obviously had noticed that Jess was losing weight, but it didn’t cause us major concern because of some of the factors she has mentioned.  When we realised that the university course wasn’t for her and she came back home, yes we could see that she had lost a lot of weight but we thought we will get her home, get her settled again and that everything would come right, how wrong we were!  Even though she had not been diagnosed, anorexia had well and truly settled in.

In January 2015 we took her to the doctors for a problem she was having with her feet, at the time he noticed she had lost a significant amount of weight and weighed her, we mentioned we were concerned about the amount she had lost and he said he would see her again in a couple of weeks.  She went back and was weighed again and had lost again, he thought it would be advisable for her to see a dietician.

I set up the appointment with a private dietician and we visited frequently, Jess would eat what she was advised and was seen to be trying, but reflecting back now and knowing what I know, she was eating the bear minimum and discarding food.

All the time in the process up until she was admitted to hospital we were trying to get help, Jess had continual assessments, but we felt like we were banging our head against brick walls all the time, as no help was forthcoming.

We were screaming out for help but just couldn’t get it anywhere.  Home life was so difficult; you don’t want to make an issue about food and so you become frustrated when you cannot say anything and you are just sitting there watching you child deteriate even further.  You feel totally helpless and obviously your heart is breaking, you want to just say EAT, but it is not that easy, it is the mental issues that are the problem.  It was a vicious circle as Jess’ BMI was that low she was not thinking rationally.  When she was admitted to hospital, as hard as it was it was a huge relief, as at last she was getting the care she needed and there was light at the end of the tunnel. 

When I sat in for her initial assessment at the hospital, they couldn’t believe she had been working right up to being admitted and were horrified that she had been driving, as she could have had a heart attack; that’s when the reality of the situation sunk in.

Hospital visits were hard. Sometimes I would go and she would just sit in silence, if she did talk it would be about what she had eaten and was having to eat and this was causing her so much distress. I was so excited to go and see her, but the visits weren’t always pleasurable.  I was always aware though that she was in a safe environment with some wonderful nurses that looked after her, and I will always be eternally grateful to them for caring for her so well during her stay.

As she started to put the weight on things did get slightly better, but then the home visits started, bringing with them a whole other set of issues.

Her first home visit went well, although, I didn’t trust that she had eaten everything that she was required to eat. This meant that I was constantly checking up on her.  She caught me in the act of measuring how much juice she had drunk and everything blew up. I was so upset. I thought I had blown everything, but when I explained to the staff at hospital they said they would have been more concerned if I hadn’t been so observant on reflection of her previous behaviours.

It puts a big strain on family life and in some ways it is like having a young child again; watching out for them all the time, and to an extent, giving in to them to not cause confrontation.

I am sure that when people think of an eating disorder, they presume that it would just be meal times that would be a challenge. I don’t think people realise that this illness has an impact on every aspect of everyday life. Food shopping, clothes shopping, eating out, family events; the list is never ending as to where the eating disorder makes an appearance.

Food shopping could take a considerable amount of time. Jess was adamant that she would attend these outings, and this was all down to the sense of control she desired over options regarding the selection of food. It was a horrendously frustrating event. Jess would stand staring at products for an incredibly long time to try and make a decision.  Knowing what I know now, this was because she was scrutinizing the multitude of labels on show. She wouldn’t reach out to put a product in the trolley unless she was certain that it complied with the many rules she had felt the need to adhere to. Every time I tried to question her choices, I was hit with a snappy remark and false justification. In the early stages, I was so worried about falling out with her that I just tried to make suggestions, but even then, her moods were so erratic that you could never predict what response you were going to be greeted with. It was only when she started to come back from hospital and we had a definitive meal plan that we had to follow that things got so much easier. She knew what she had to do, and her mindset had completely shifted to become more positive and focused on recovery; that is not to say that everything was smooth sailing!

In January 2015, Jess started an apprenticeship at a school, and this required the need for suitable clothing. I remember one day we decided to go to Meadowhall to do some shopping, and again this was an extremely distressing venture. I obviously knew Jess had lost a lot of weight but I don’t think either of us expected us to have the problems that we did in finding clothing that fit her petite frame. Jess was adamant that she could still fit in adult clothing, however as we started to search for a pair of black trousers, her current health situation was thrown into perspective. We walked into the changing room with a size 10, but gradually the sizes began decreasing, as I would make several trips back onto the shop floor to retrieve a pair for her to try. It was only when we had exhausted every adult size in every possible style that both Jess and I were hit with a flood of emotion. I had to remain strong, but seeing your then 18 year old daughter having to walk into the childrens’ section of clothing is not something you want to witness. I was convinced that this was going to be the pivotal point in spurring Jess to change her eating habits. However, again, at this point I don’t think any of us were aware of the extensive damage this illness had already done to her mental state.

Jess is home full time now and is making good recovery progress.  I must say that I am so proud of her. I can honestly say that since the day she was given the lifeline of a bed in hospital, she has followed the rules to the letter of the law and done whatever she was told to do.  Because of the rejections that she had along the way she was so grateful of the opportunity to get better and didn’t want to throw this back in anybody’s face and was determined to give it 100%. 

I would say to anyone that if you do have any concerns about a loved one don’t leave it too long or bury your head in the sand.  We did try to get help but it is just not out there in certain regions, until you are at a very low weight and by that time you are in a critical condition. 

This blog is helping Jess’ recovery and although it is hard reading, it brings back sad memories, but I know she hopes that it will help others and also help us all to get some understanding of this terrible illness.

One Change of Routine at a Time...

When people describe recovering from an eating disorder as a journey, they really do mean it. Just when you feel like you have come to the end, you realise that there is so much further left to go. The hardest part about this is the fact that each stage of your journey means different environments, different responsibilities and different routines. As somebody that relies on organisation, structure and rigidity, the transition between these stages was quite difficult for me to deal with. The first change that occurred was when I was allowed to start going home on a weekend. After spending seven weeks in a hospital where meals were to be eaten at very rigid times, I found it difficult to break this habit at home. I would continue to set my alarm for 6:45am, so that I could shower and get ready in time for my breakfast at 7:30am. I would make sure that any activities that were planned, allowed for morning snack, lunch, afternoon snack and dinner to be at the exact same time as at the hospital. If these were not fulfilled at the specific times, I found myself becoming distressed and anxious.

However, it did get better! The first time that I realised that it was ok to be flexible about timings was when I went to London with my family. We had a variety of activities planned that would force me to challenge these rules that I had set around when I could eat. I am not going to say that it was easy, particularly because of the meal plan I was on, but I managed and learnt to adapt to the situation, without compromising on my intake. I found that after I had done this the once, each weekend at home became easier and so much more enjoyable. I found that I was engaging more with what was going on around me, as apposed to staring at the clock waiting for it to strike, signaling a meal or snack time. I do still find it difficult to imagine a time where I will be able to listen to my body in order to determine when I am hungry, but I believe that is just because I am still on a weight restoration plan. On the other hand, I am very optimistic about the fact that I will be able to recognise hunger and sustain a regular eating pattern when I am on a weight maintenance plan, I just know that this will take time.

Timings were continuously challenged throughout my ongoing recovery journey; particularly when I started to step down to the day service programme at Evolve. As my discharge date from hospital approached, I began a gradual transition onto the next stage of my treatment plan. At this point, I was living at or attending three different environments over a seven day period; Evolve on a Monday and Friday, hospital Tuesday-Thursday and then at home for the weekend. I found that this really challenged me in terms of my progression towards recovery, and tested how much I had learnt. Fortunately, because I had the mindset of embracing all aspects of treatment, I worked hard to make sure that I stayed on track. My weight restoration speed did plateau during this period due to increased activity, different food products and a wider variety of options for meals and snacks. Yes there were a few blips as well, and there still are, but you have to remember that for the past 3 to 4 years, my coping strategy to deal with difficult situations has been to control food, so habitually I found myself doing this, but soon pulled myself back out of it. Instead, I used coping strategies that I had learnt in hospital, such as playing with a hair bobble on my wrist, taking some time out for relaxation, but most importantly, talking. I was communicating my problems to my parents, which was something I had previously found so difficult, but realised that it helped me so much. Making these transitions was not only testing my understanding and confidence around food, it was testing how I use new coping strategies that are not damaging to my health. These are all seemingly small steps, but will have a huge impact on me as I reintegrate back into my new healthy life.

Starting at Evolve was a huge step in my recovery. I went from selecting a meal from a choice of three, to making completely new decisions about what meals I would like to eat. The hardest part was that I was, and still am, on a weight restoration plan, so creating a varied meal plan that included breakfast, two snacks, two main meals, two puddings and supper did prove to be quite a challenge. I was given a booklet to look at with plenty of suggestions, which did give me a few ideas. However, I found that I was unhealthily using this new freedom to entertain a lot of the rules that I had established about food whilst in the depths of my anorexia. I realised that this was a problem and so decided to approach the dietician to tell her about what I was struggling with. She alerted the other members of the team so that when I was meal planning, they would question whether I was still, excuse the pun, feeding into the anorexic thoughts. With time this improved, and I continued to challenge all aspects of the rules I had established, including the layout of food on a plate and the mythical guidelines I had set myself over which types of food groups I can eat in one day. I am sure people reading this will think that it is absolutely ludicrous that I have such rules, but in all honesty, they are literally just a few of the many things that circulate my head on a daily basis. Some days I wake up and wish that I could have a brain transplant, just so that I can scrap all of these beliefs that I have absorbed at some point in my life and cannot seem to let go of.

As well as the growing responsibility I was given over choosing what to eat, I also started engaging in Body Image therapy at Evolve. Although at this present time I can only do small amounts of the work, because I am working on weight restoration and consequently my body is changing, I have still found it beneficial. I explored my past and was able to take note of times in my life when I started to develop issues with my body. At first I found this quite difficult because I never thought I had an issue with the way I look and that my anorexia just started because of problems I had with food, but the more I investigated, it became quite clear that there were several triggers throughout my childhood. Seemingly small instances such as being categorised as small, medium or large for dance costumes; looking at images of models in magazines that were seemingly successful. It hadn’t yet began to effect my eating, but again the accumulation of several thoughts and ideas are what I believe assisted the development of this illness. I do think that the media have a lot to answer for in terms of how individuals make comparisons and connections between beauty and success. However, I think that the way a male or female is influenced by what is portrayed in the media does very much depend on their self esteem and body image at that time. Unfortunately because of the nature of my interests, I was looking at more than three fashion publications weekly, and was struggling with my body image, therefore was constantly absorbing everything that I read and saw. This started the ball rolling in terms of the food rules I established and now have so engrained in my mind.

At Evolve I could also explore more everyday challenges that I would be faced with. I had assistance from an Occupational Therapist who furthered my confidence in food shopping and eating out. These are scenarios that I would completely avoid in order to prevent unwanted anxiety, but I could not live my life like that. I have continually challenged these and consequently am now rebuilding my social life with accepting that eating out is a huge element of that. Every time I go it gets that little bit easier, but with nutritional information being displayed everywhere, I am still finding it a struggle to ignore the messages shouting out to me about what to choose. As with anything, as my own voice continues to get stronger, I know that it will soon drown out the other, but this will take time.

Throughout every stage of my treatment, I have tried to fully apply myself to what I was being taught. I didn’t want to take any opportunity for granted, as I knew how hard they were to come by. Each environment had its own challenges that did take a while to adjust to. Learning to trust the staff members was a huge thing for me, as I didn’t like to communicate my problems, even to those close to me. So after allowing myself to open up to the staff at hospital, I then had to establish new relationships with those at Evolve. I had to remind myself that if I don’t speak now to communicate my issues, then my 6 week placement would have been a waste, because I would have not have challenged everything that I was struggling with. Similarly to at hospital, I met some wonderful other ladies that were also receiving help. Even with everything that they were dealing with, they still managed to support me throughout, and I am so grateful for that. It was very difficult being the only person at Evolve who was still on weight restoration plan, so I felt like I was the only person constantly sat at the table. However, the other girls would make themselves a hot drink and come and sit with me as I ate my two course meals twice a day. They didn’t have to do that, but they did and that meant so much. At both environments, I genuinely felt like I was understood. I didn’t feel like I was going to be judged for saying what was on my mind or what I was finding difficult. I think everybody going through this deserves to have the opportunities that I was offered, it isn’t fair to be denied access to this life saving treatment, and unfortunately I am classed as one of the ‘lucky ones’ for having the chance to have another go at life.

One Message of Support at a Time...

I cannot express how important support is during recovery. I presume it is the same when dealing with any illness; you always have them days where you feel like giving up. The odds of you creating an already defeated frame of mind for yourself first thing in a morning are always in your favour. That is the nature of this illness and the recovery process; you constantly doubt your ability to make progress and every day is a battle. However, just that one message of support, whichever way it reaches you, can completely turn your day around.

When I first arrived at hospital I received cards from family and close friends, which was wonderful. Having them displayed on the windowsill in my uninspiring room, somehow managed to brighten everything up, including my mood. From the start of my admission I couldn’t understand why everybody seemed to be making such a big deal of me going to hospital, however, this was when I didn’t even know I was ill. It was only as the weeks turned into months and I still hadn’t even been outside, that I realised how severe my condition was. Looking across at the cards, I understood that even if I didn’t believe in myself, there were people at home that did, and that was as much motivation as any.

A few weeks into my hospital admission, I decided to write a post on my Facebook page to inform people of my current situation. I was incredibly nervous about doing it because I felt like I would have been judged and everyone would have talked about it. However, it was something that I couldn’t deny any longer, and I felt that those that cared and understood would be the only people that I needed in my life anyway, so I couldn’t lose anything from doing it. I was absolutely overwhelmed with the response. Old friends that I had lost contact with due to my lack of confidence, and even those that I would just say hi to in passing, where being so incredibly supportive, that I felt a surge of motivation. It dawned on me just how much I had lost out of my life. People did still care about me, and wanted to talk, regardless of me having a mental health condition. It was the push I needed. It spurred on a determination to get better, be healthy and get out of hospital to be able to speak to these people in person. To socialise and communicate, in normal surroundings, doing normal activities. I will never be able to thank these people enough, even if it was just the one message, it still had such a huge impact on my self belief, and consequently my recovery.

I don’t even have to write the names of the people that went completely out of their way, to assist me during my recovery; they know who they are. Hospital visits, phone calls, daily text messages and unexpected cards and gifts; I will never be able to repay these individuals for everything they did for me. They drove all the way to Grimsby to sit on a hospital bed and listen to me vent out all of the emotions I was feeling. They planned my weekend home leave for me, to make sure that I had something to look forward to. They gave me a reason to get up every day, to challenge my behaviours and to eat that last mouthful. Through those individuals giving me that encouragement, it dawned on me that I suddenly had a reason to fight this fight.