My world: an outpouring to those who will listen…

Hey folks, sorry I haven’t done my regular posts this week but I have been in a very dark place in the world lately and I am struggling  in many different ways.

The state of the world we live in….

My binge eating disorder has been testing me so much over the past month it has drained a lot of my energy trying to keep on top of it and I exhausted almost all of my coping strategies to try and stop heading down a very steep slope again.  I am winning the battle up to now but I really could use those positive thoughts from you if you can spare them.

Zanna and I have been working so hard trying to get things done for our charity work and things seem to be going well.  We have been organising a Halloween Party, Christmas Party, Christmas Fair, Pantomime Tickets, looking for donations for raffle prizes and organising a sponsored ghost hunt.  I have been doing a sponsored weight loss and over the past 2 months I have lost 17 lbs which (if all gets collected) has raised around £230.

We were at an award ceremony this evening for my 11…ooops 12 year old daughter, Manga.  She was awarded the Headmaster’s award from her Primary School for her contributions to the school.  We could not have been more proud of her as she works so hard in circumstances that most kids would struggle with.  She does so much for her little sister, Pretzel, without so much as a word of complaint and she truly astounds me with what she is capable of.  I know that she is going to be an astounding young lady and excel at whatever she puts her mind to.  It was her birthday today as well which made the evening even more special for us and for her.

The world’s plan conspires against us….

Unfortunately, whatever power that drives this Earth that we live on decided we had been a little too happy and a little too complacent and hit us with a sucker punch today.  We had the results of an MRI that was done on Pretzel in February and the results shocked us back to reality.  It showed that she has parts of her brain missing and other parts that are underdeveloped.  There is also some parts which are over-sized which all adds up to a big mess of everything.  The thing is we were never told about these things when she had her first one done when she was 8 months old.  To say it took the wind out of us is a little bit of an understatement.

The world our family lives in……

From the beginning of her life, Pretzel has been a bit of a conundrum for the medical profession.  This is nothing that a lot of my ‘family’ over at SWAN UK have not heard before as it seems to be a common theme among our children.  We just about managed to deal with the fact that she was resuscitated at birth after a traumatic labour for Zanna.  We just about coped with the fact that she was admitted 2 hours after being discharged from maternity with low blood sugars and low Oxygen in her blood.  We even just about managed to cope with the West Syndrome (Infantile Spasms) which is a rare form of seizure in children.  It took many months to get her seizures under control and at a level where she could function day-to-day but by God we got there.  We even managed to come to terms with the Grand Mal seizures she had that almost took her life on more than one occasion.

Pretzel has worked so hard along with us to try and overcome physical deformities, mental obstacles and so many other factors that no parent would want their child to go through.  Developmentally she is still at the 18 month old level in a 9 year old’s body but she can walk around the house on her own, she can play with the toys that she wants, she has a stubborn determination to do what she wants, when she wants and she can hum ‘twinkle, twinkle’ like a champion.  We are so proud of her for being able to do even that.  We always held an inner hope that at some point in the future she would be at a level where she may be able to do things for herself a little more but after today’s news that has been snatched away from us and it has been snatched away from her too.  I feel cheated……..not for me, for her.  She deserves so much more than what she has.  She has fought everything that this life has thrown at her and excelled through the worst of circumstances, but yet I feel saddened by the many things she will not get to experience.

She has been robbed of the chance to experience the joys of having a loving relationship either with us, her family, or with another person.  She will never have children of her own.  She won’t ever get to drive a car, go to work or have a social life that other teenagers enjoy. I think some parents take for granted that their child will walk, talk, grow and experience the world without a second thought that things could be so very different.  I know this because I was the same with my other two daughters but Pretzel changed all of that.  She has fought and struggled to do everything that she has achieved so far and it has taken hundreds of hours of therapy from Zanna, myself, Manga, Jaffa and the many teams of support staff that have known her.  All of that work has managed to get her to the very basic level that she is at today.

The world of a father in pain……

So here I sit, like a knife has been wedged into my heart, bleeding and in pain trying to cope with it the only way I now know how………writing it down to get a message across about what my family lives each day.  If I had the chance I would trade my existence for my daughter to have a life where she could experience the beauty of this world and some of the people in it.  I wouldn’t hesitate to trade places if I thought she would be able to achieve on a level that everyone else does because her determination and perseverance through some of the toughest situations means that she would do something really great.  I won’t get that chance though so we have to go on the only way we know how.  We pick ourselves up off the floor, slap on some sticky plasters and bandages and prepare to head back out into the blinding, swirling storm of uncertainty.  We live our lives day by day wondering what life will throw at us next.  Will it be good? Will it be bad? Will we get through it and tough out the rough times?  I don’t know what the answer is to that but I do know one thing……  We will go down fighting as one hell of a strong family that nothing could ever tear apart.

I ask of you one thing though folks, please, please don’t ever take anything in your life for granted.  Live your life being as happy and content as you possibly can be. Appreciate everything that is truly wonderful in the world and sped your life surrounded by those whom you love and who make you happy.

That is all I can deal with writing for now folks, sorry if it did put you on a downer but it had to come out of my head and my heart to give me the room to grow in strength and determination to carry on once more.

Until next time folks, Stay Safe and Keep Smiling!

Related articles

• SWAN UK children get Gold Medals for Olympic feats (keithaddison.co.uk)
• A Family Doctor’s Tale – BINGE EATING DISORDERS (kennethkee.info)
• My hidden illness: 30 things you may not know (keithaddison.co.uk)
• Binge eating: A disorder that affects men and women alike (wjla.com)
• Parents with a special needs child (braininjuryselfrehabilitation.com)

Eating my way to an early grave

Hi folks, this is going to be a toughie for me but I don’t want to dodge it any more.

I was eating myself into an early grave. No, that is not being overly dramatic, it is true. I suffer with Binge Eating Disorder and it is something I have struggled with for many, many years. Fortunately I haven’t had a binge episode in around 3 years now but I have come close a few times. Let me take you back to the beginning of the story of my binge eating journey.

A tackle must be made below the neck to avoid injury to both players.

When I was at school I was a fairly happy person and I was always engaged in lots of activities such as the school orchestra, drama performances and mostly I was a rugby player. I used to play rugby for the school team and I also used to play for a local team on weekends. I absolutely loved it. When I wasn’t involved in a match I was training. Now I fully admit I was never the fastest guy on the team, I couldn’t kick for toffee and I wasn’t the fittest person on the team either, but what I lacked in these areas I made up in dedication and determination. If I wasn’t playing or training then I used to get on my bike and ride all over the place and meet up with friends.

At the time this I was living with my mum and her boyfriend and there were lots of tensions at home and things often got very heated. I realise now that this point in my life was when I started to binge eat. I used to go to the local shop on the way back from school and I would buy crisps, sweets, chocolate…..basically anything that I could afford and get the most of for the money I had. Now when I say crisps, sweets and chocolate I don’t mean your normal standard sized bars, I am talking about the multi-pack varieties, the 2 for 1 deals etc. I used to eat all of these and dispose of the wrappers during the 10 minute walk back from the shop to the house. I never really considered at the time that this was abnormal or any kind of problem because I wasn’t overweight, I hadn’t gained any weight and I was still running around on a rugby pitch virtually every day. Things finally came to a head with my mum and I ended up moving house to live with my dad and his partner. I didn’t speak to my mother for many years after that but my sister remained living with her and her boyfriend.

At this time I started to get a flare up with my neck and back problems which started to affect my rugby playing. I would often end up injured after a scrum and occasionally would be taken to hospital to be checked out. They couldn’t find anything so I was usually discharged in a lot of pain and to a pissed off look from my dad and him telling me that he didn’t believe I was in pain because they had found nothing and it was a waste of his time. Now don’t get me wrong, I don’t want to make my dad out to be the bad guy, because even to this day they still can’t find a reason for the chronic pain I have in my back and neck. After a while it got to the point where I couldn’t play rugby any more and was advised by my doctor to stop if I was still getting the pains. It was a massive blow to me because I loved playing and I did try again a few times but I was lucky to last all of 5 minutes before I had to come off the pitch in agony. This effectively meant I went from being active and training/playing every day to nothing at all.

In the meantime the binge eating continued…….

My dad and his partner used to work in a bookmakers shop and during the summer months would often be working late until 9-10pm. This meant I was usually in the house on my own from around 4pm on a school day. This was usually the time that the binges would start getting really bad. I always managed to hide what I was doing from them so they were totally unaware what was happening until I told them years later.From where I lived there was a local corner shop about 5 minutes walk away and my bus used to stop right by it when I came back from school.

Chocolates (Photo: J. Paxon Reyes)

I used to get off the bus and go into the shop and, by this time my binges had gotten a lot worse, I would buy a cake, a tin of custard, a multi-pack of crisps, chocolate, sweets etc. I used to eat these as I made my way back to the house making sure that I would discard wrappers along the way. I would have eaten most of the things by the time I got to my front door and then I would get in and go straight for a bowl and eat the full cake and custard. With the wrappers from the cake and custard I would usually put in the outside bin underneath other things so they couldn’t be seen (Yes I know it is gross but it is part of the problem). After this I would head up to my dad’s bedroom where I knew he kept chocolates and sweets he had been bought as a present and I would take one or two chocolates, making sure they wouldn’t be too noticeable, sometimes even re-arranging them in the box. I would then head back downstairs to the fridge where I would eat a huge amount of cheese, any cold meats in the fridge and pretty much anything that was there ready to eat. Then I would go to the cupboard and get packets of instant mashed potato, stuffing and gravy granules, make them all up as they only needed hot water, eat the full amount they made (usually 3-4 servings) and then head to the freezer. I would take out anything that would cook in a deep fat fryer such as sausages, chicken nuggets chips etc. and make the full bagful and eat the whole lot. This is where the binge would usually end and the worst part would kick in. Now when I binged I was not in control of my body or thoughts. It is hard to explain (especially when I haven’t done this before!) but it is like you are aware of everything going on but you are powerless to stop it. My head is screaming at me that I shouldn’t be doing this and that I should put down the food but no matter how hard it tries it just doesn’t connect with the rest of my body. It is like being tortured every time it happened and knowing that no matter how hard you try you are powerless and nothing will deter you. Then when the episode is over the stomach pains start from overeating and it is like someone has filled you to the point of bursting and you literally feel like you can’t move a muscle. The next stage is the realisation and guilty feelings for eating so much food and, for me at least, stealing sweets from my dad. The final stage is the self loathing which is probably the worst and most damaging part of the binge episode. I felt worthless, disgusted with myself, ugly and that I shouldn’t even be alive. This would happen every day sometimes twice or three times a day. If people were around then I would find other ways to get food and smuggle it to my room or simply go out and walk around the street or park eating as I went.

Binge Eating Disorder (Photo: Alaina Abplanalp Photography)

This went on for many years to the point that my body would no longer feel hungry or full any more. I know that this is a foreign concept for people to grasp but with binge eating disorder your body eventually goes through cycles of binges and starvation. Basically what it meant for me was that I would binge on one day then not eat for one to three days afterwards. What this did was made my body go into emergency storage mode when I did binge, storing fat and then using it when I was ‘starving’ and not eating. This eventually got to the point where my body would not expect to get food at any particular time and when I did start eating it became like an eating ‘frenzy’ where I would keep going until it was physically impossible to eat any more. This is something that I have only managed to sort out about 3 years ago. I was 14 when the binge eating started, I was 22 when I found out it was an actual problem and I am 33 now . That is 19 years of binge eating and not ever feeling hungry or full from eating. I only realised this was a problem when I took an online quiz for mental health after I put on a lot of weight and no matter what I tried I couldn’t get rid of it. It was my wife who finally persuaded me to go and see someone about it. I was given sessions of Cognitive Behaviour Therapy which taught me how to recognise trigger situations for my binges and also how to cope with the damage the feelings of guilt, worthlessness and depression, had done to me over the years. It was so bad that I even had a plan on how to commit suicide. The only thing that ever stopped me was the fact that I was married and I had children and I couldn’t face leaving them without a dad/husband.

If my wife hadn’t realised there was a problem with me, my food and my depression I can honestly say I would not be writing this blog now. I was going to end my life. Wow, I can’t believe I actually got that out! My wife saved my life and that is yet another thing I owe her for. She gave me 3 wonderful girls and my life back. As I sit here now and think of all the wonderful things I have seen and done I feel foolish, stupid and crazy that I almost didn’t have it. That is why in my mind my wife is like an angel sent to me when I needed her most. She rescued me from the pit of despair and showed me that life is worth living. She then blessed me with three wonderful, beautiful girls and in my youngest SWAN daughter gave me a gift that taught me how to be a better person.

I am a fairly short guy standing at 5’7″ tall (170cm) and at my heaviest I weighed in at 315lbs (143kg) which resulted in my blood pressure being sky high and I developed Type 2 diabetes. I went through a series of yo-yo dieting and even got prescribed Sibutramine before it was removed from use in the UK. I only ever managed to get my weight down to around 280 lbs (127kg).

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Slimming World Logo (Photo credit: Wikipedia)

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October 2011 was the turning point for me. It was the anniversary of my stepmother’s death from fighting cancer that made me take stock and decide to change the way things were for me. I used to attend a Slimming World class with her and we would be there to spur each other on to lose the weight. I started trying to lose weight and only managed to get to the 280lbs (127kg) mark before stalling and I hovered there for a few months until, in December I decided I would sign up to go to Slimming World classes again in January. Since then my weight has dropped from 289lbs (131kg) and on the 25th June I received my 3 stones lost award meaning I now weigh 246.5lbs (112kg). I am about 1/3 of the way towards my final goal but already my diabetes has improved so my medication has been reduced, my blood pressure has come down and my BMI is now reducing as well.

I guess what I am trying to say is that anyone who is suffering out there in the world with these feelings, binge eating disorder or at any point feels like they are worthless you are not alone. There are other people who feel like this and there are other people who have been there and understand what is happening. Life is worth living, I have proof of that every single day that I see my wife and children. I hope that by reaching out with some of the things I talk about in this blog I might touch somebody, to make them feel like there is someone who understands and that I might give a little insight and understanding to those that have not experienced these things for themselves.

Whether it is Parenting a special needs child with an undiagnosed genetic disorder or SWAN, chronic pain, diabetes, binge eating disorder or anything else life is going to throw at me., I feel that the strength of my family and now my own determination will see me through

I promise the next posts will be on something a lot more cheerful as I don’t want everyone thinking I am a grumpy Gus (although my kids will assure that I am !) I do smile and laugh and have fun sometimes as well!

So until next time, Stay safe!