Busy, Busy Bees!

Heya folks, we have all been busy, busy bees in my household recently.

We have all been doing well, except for my sleeping but that is always off so no big news there.  I have had some fantastic news today about my Type II diabetes…..  I have it managed and under control with NO MEDICATION!  This is coming from a guy who, at the beginning of this year, thought he was going to have a heart attack in the next year or so (as my doctors informed me) and was at higher risk of cancer, stroke, heart problems etc.

Top right – 315 lbs, top middle – 308 lbs top right – 301 lbs
Bottom right – 301 lbs, Bottom Right – 294 lbs

I truly started my weight loss journey properly at the beginning of this year in January when a new Slimming World class opened up in my area.  I decided to go to the classes just to keep me focused and motivated at first, but even before that I had been desperately trying to lose weight.  I am 5 feet and 8 inches tall (a shorty for a guy I know) and at my heaviest I weighed a whopping 315lbs….yes I shock myself now when I think of it!  This was through a combination of back problems, pain, inability to do exercise and also some pretty lame excuses really.  I never used to pig out on food anymore since I got my binges under control but by then the damage was already done.  I did eat the wrong foods when my emotions got on top of me and that was really hard to break away from.  I have always used food for ‘comfort’ eating which again, was another habit I found hard to break.

I can say now VERY HAPPILY as well I might add, that I am a massive 78lbs lighter than my heaviest weight and I have lost a whopping 16 inches from my waist!  My sister came around the other day and I grabbed my suit I wore last year and put it on and showed her.  I was lost in it and I think she got a bit of a shock from it as well.  It felt great to be able to ‘show off’ how well I have done but I still find it hard to accept the credit……yet.  I don’t want to get too complacent because I still have a fair bit more weight to lose to be at a healthy weight for myself.  I don’t want to think that I can sit back and relax and not keep striving for that ultimate goal.  In two years time it will be my 15th wedding anniversary and I would love to be able to renew our wedding vows looking like a million dollars.  Zanna has been doing fantastically well in losing herself but she really shines at helping me with my loss.  She puts up with the grouchy, sleepless monster that waits to lynch her in the mornings sometimes and she puts up with the indecisive, picky, annoying, stressed hubby when he cant figure out what to eat for dinner.   It is just another way in which she makes my life a brighter place and I would not be anywhere without her.

So, what else has been going on?  Well I have been tapping away at the keyboard loads writing creatively for university and I am having so much fun and I have been reading books, plays, poems etc. like they are going out of fashion.  I will hopefully get chance this week to write the piece for Natalie from turkishtravelblog.com after she gave me the words yearning, historic and masterpiece.

We have also been doing a bit of work with Addison Street Carers Association who organise events for the children who use the local short break care unit that our daughter, Pretzel, uses.  We have had a spooky Halloween party, we had some of the members in Newcastle Keep doing a sponsored ghost hunt, we have the Christmas fair and Christmas party coming up this week as well.  It should be a great time and we always have a good laugh and a lot of fun with the kids and staff from Addison Street as well.

We are also meeting up again with some of our lovely SWAN North East buddies at the Alan Shearer Centre in Newcastle this Sunday which will be fabulous.  It is so nice to meet up with other families who can fully understand how intense and tiring caring for an undiagnosed child can be and just how little help is given to us because our children don’t fit a check box.  There is no judgements, no comparisons and no prejudices in the group, just a lot of kids and adults getting together and enjoying a good old chin wag!

So by the time we get all that out of the way we should be heading towards Christmas Day itself and then into the New Year.  I am starting to think now about New Year’s resolutions after the success of my weight loss one this year.  Obviously I will be keeping that one carrying on but it would be nice to challenge myself with something else as well.  Maybe write a novel by this time next year?  Maybe to get more involved with SWAN UK?  Maybe to do more exercise and have more family time together?  Who knows, there are so many!

Have you thought about resolutions or goals you want to set yourself for the upcoming year?  Tell me about them because you never know we may be able to do it together and spur each other on!

Okie dokies, until next time folks,

Stay Safe and Keep Smiling!

Related articles

• Diabetes Symptoms & Causes
• Three Tips To Lower Your Risk For Diabetes: Dr. Mao’s Wellness Living

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)

My hidden illness: 30 things you may not know

Hey folks, I wanted to post this up as I have had it sitting in my files for a while and I never could find the right time to put it up.  It is an article that is all about my hidden illness or in fact my hidden illnesses.  It may be something that you are not interested in but there may be a few things in there that you can identify with or that may even surprise you.  It is not my intention to offend anybody or to make anybody feel uncomfortable but I hope that there may be a little more understanding comes from it about the things I have to deal with on a daily basis due to each different hidden illness.  So here we go with the 30 things you may not know about my hidden illness:

1. The hidden illness I live with is:

Chronic Pain, Diabetes, Insomnia and Binge Eating Disorder

2. I was diagnosed with them in the years:

Chronic Back Pain – 2000/2001
Diabetes – 2010
Binge Eating Disorder – 2003
Insomnia – 2011

3. But I had symptoms since:

Chronic Back Pain – 1985
Diabetes – 2010
Binge Eating Disorder – 1993
Insomnia – 1993

4. The biggest adjustment I’ve had to make is:

With Chronic Pain I have had to accept the fact that I need to use a wheelchair to travel long distances and have adaptations made to my house to get into the shower. My memory is now a lot worse and it takes me twice (sometimes three times) as long to do tasks as I used to and if I don’t write it down I usually forget.

5. Most people assume:

That I am either faking it with the back pain, my Insomnia is a “poor night’s sleep” and my weight and binge eating disorder are just because I am greedy and eat all of the wrong foods.

6. The hardest part about mornings are:

Waking up in excruciating pain knowing that the day is going to sap the energy out of me even before I have finished my breakfast.

7. My favourite medical TV show is:

Embarrassing Bodies – Sometimes I wonder how the people on there haven’t pushed for a doctor to sort out the problem. It is fascinating but not for anyone without a strong stomach.

8. A gadget I couldn’t live without is:

My PC as it is where I do all of my writing, studying, gaming, internet use….pretty much everything in my life happens using this. I don’t know if that is a good or bad thing.

9. The hardest part about nights are:

Feeling absolutely exhausted from whatever I have done during the day but knowing as soon as my head hits the pillow I am going to be awake because of my insomnia. Sometimes I don’t sleep for 3 or 4 days at a time which is a nightmare.

10. Each day I take 43 pills & vitamins.  This totals 15,695 tablets in a whole year.

11. Regarding alternative treatments I:

Have tried TENS, Acupuncture, Pain Management Clinics, Massage, Aromatherapy, Herbal Tablets for sleeping, Meditation, Exercise Programs.

12. If I had to choose between an invisible illness or visible I would choose:

A visible one if anything as people might realise that you have a disability instead of assuming that you are just ‘faking it’ or that there is no reason for you using disabled facilities. Of course in an ideal world I would have neither but I guess that goes without saying 

13. Regarding working and career:

I can’t work as I am a carer for my disabled daughter. I am currently studying with the Open University to get a degree so that I have a chance at getting a job if I get the chance to when my daughter is older.

14. People would be surprised to know:

That I am constantly in pain as I try to keep a smile on my face and an upbeat attitude when I am out in public.

15. The hardest thing to accept about my new reality has been:

Accepting that I can’t do certain things that I used to do before I was diagnosed with these things.

16. Something I never thought I could do with my illness that I did was:

Lose weight as much as I have. I have been trying to lose weight for many years but because of my pain and binge eating it has been very difficult. I have managed to lose over 49lbs (22 kilos) since January this year (2012)

17. The commercials about my illness:

Are non-existent. Nobody seems to talk about chronic pain, insomnia or binge eating disorder in the media very much at all. It is something I am sure affects a lot of people but never gets discussed.

18. Something I really miss doing since I was diagnosed is:

Cooking. I wish I could get back to making meals and baking bread as it was one of the things that kept me very relaxed.

19. It was really hard to have to give up:

Playing music in a band. I loved doing this so much but now there is no way that I could jump around on the stage like I used to or move all of the equipment in and out of a venue.

20. A new hobby I have taken up since my diagnosis is:

Creative Writing and Blogging. I have enjoyed writing for my blog so much that I decided to look into other forms of writing and I’m loving it so far. It is a good way for me to empty my brain and gives me the best chance of sleeping at night.

21. If I could have one day of feeling normal again I would:

Go for a long walk and picnic with my wife & kids and then come back and play some bass guitar.

22. My illness has taught me:

That there is a lot of intolerance and ignorance in the world about disabilities and illnesses and especially if they are ‘hidden’. It has also taught me to be a lot more tolerant towards other people as well because you don’t know their situation without talking to them.

23. Want to know a secret? One thing people say that gets under my skin is:

‘You just need to get some exercise and lose some weight and you will be fine’.

24. But I love it when people:

Come to visit me when I don’t have the energy to go out. It doesn’t happen often but when it does, it makes my week!

25. My favourite motto, scripture, quote that gets me through tough times is:

“Life is 10% what happens to us and 90% how we react to it.” – Dennis P. Kimbro

26. When someone is diagnosed I’d like to tell them:

You are not the only person who is going through this. Stay strong and seek others who can support you and whom you can support.

27. Something that has surprised me about living with an illness is:

Just how much I used to take for granted in my daily life. Little things that I would do without thinking now take a great effort to achieve.

28. The nicest thing someone did for me when I wasn’t feeling well was:

Sat with me for a whole day and watched films (my wife and kids) so that I wasn’t on my own and bored in bed.

29. I’m involved with Invisible Illness Week because:

There needs to be a lot more done to tell people about invisible illnesses and through invisible illness week there may be a chance to do just that.

30. The fact that you read this list makes me feel:

Very grateful for your time and I am so happy that there may be a little more understanding about my life and the things I go through each day.

So there you have it each hidden illness discuss a little bit.  I hope that this wasn’t too long for you folks and I am sorry that it is all about me but hey what are blogs for if it isn’t for talking about yourself!  I hope you found it interesting at least and now you have a little bit more about each hidden illness I suffer from  so you know where I am at mentally when I talk about these things on my blog.

So thank you for reading this and until next time folks, Stay Safe and Keep Smiling!

Related articles

• Eating my way to an early grave (sleeplessinnewcastle.wordpress.com)
• Why men don’t admit to binge eating (theglobeandmail.com)
• invisible illness week 2012 (phylor.wordpress.com)
• Diagnosis, Treatment, And Prevention Of Sleep Disorders (smmirror.com)
• Insomnia and anxiety (butterflywarrior.typepad.com)
• Insomniacs ‘should be given therapy not sleeping pills’ (independent.co.uk)
• Sleep: How to Deal with Insomnia (momitforward.com)

Chronic Pain sufferers get new hope?

Is there hope for Chronic Pain sufferers around the world?

Scientists at the University of Liverpool and the Royal Liverpool University Hospital have been awarded -1.4 million to design a new drug for the treatment of chronic pain.

The project funded by the Medical Research Council (MRC), addresses the long-standing and urgent need for effective therapies for chronic pain which affects around 20% of adults in Europe and the US, and more than eight million adult patients in the UK alone. Medication currently available to treat the condition is effective in only around 40% of sufferers and even these patients often struggle to maintain the balance between adequate pain relief and the adverse effects of current therapies.

The research team is examining compounds which target the glycine receptor, one of the principal inhibitory neuronal receptors in the central nervous system and crucial in the sensation of chronic pain. Through medicinal chemistry, computational methods and experimental testing, scientists successfully identified novel compounds which could be used for the treatment of chronic pain without unwanted sedative effects.

Professor Martin Leuwer, from the University’s Department of Molecular and Clinical Pharmacology in the School of Translational Medicine, said: “This is an exciting project that expands our drug discovery portfolio into a new therapeutic area with a huge unmet medical need. Our collaborative team of medicinal chemists, molecular modellers and neurobiologists have made significant advances in this area and this funding provides us with the opportunity to drive the project forward towards an entirely new class of drug for the treatment of chronic pain conditions.

via MRC awards grant to design new drug for treatment of chronic pain.

 

It is great to see that finally the clinicians are starting to listen to what their patients have been saying all along with Chronic Pain.   It is an awful thing to live through and it can be so isolating and depressing at times.  When every day is filled with pain and it prevents you from getting on with things that you used to do with no problems, you can end up feeling so down and useless.  I hope that they can find something that doesn’t have the really bad unwanted side effects which, with me, are memory loss, lack of concentration, Insomnia, stomach aches and muscle fatigue.  It is such an odd feeling to be fighting pain by trying to keep moving while the medication that is supposed to be helping with the pain is designed to make you sleepy.  You end up walking around half of the time in a dream like state not knowing what is happening from one day to the next.  The worst of that is the people who don’t realise what it is like to have a hidden illness don’t know that it is like being trapped in a version of your own body but one that is wracked with huge amounts of pain all of the time.

I think one of the other things that often gets missed is the emotional and mental fatigue that plagues the chronic pain sufferer as well.   We often have to put on our best faces just to get though the day and not seem like we are moaning all of the time, while inside our bodies are screaming at us in agony. Trying to keep these two sides in check is so hard that by the end of the day you just want to crawl into your bed and sleep.  Unfortunately for me that sometimes doesn’t come either and I end up spending 2-3 nights wide awake in agony (I have been awake for 2 days as I write).  My fingers are screaming at me to stop typing now and they feel like they are going to fall off at the moment so I am going to leave it there for now.

Just to let you folks know that I am going to be dropping Feel Good Friday as I feel it is too similar to the postings I am making on Mondays and I am not getting to talk about the things I would like to.  I will be throwing a blog out as I find things that interest me and make me want to talk about them as well as the two themed posts that go out on Mondays and Wednesdays.

So until then folks Stay Safe and Keep Smiling!

Related articles

• Is chronic pain in the brain? (blogs.abc.net.au)
• Blaming the Brain for Chronic Back Pain (news.sciencemag.org)
• Chronic pain sufferers ‘sidelined’ by NHS (express.co.uk)
• Pet Therapy and Chronic Pain (painfighter.wordpress.com)

Are the disabled dirty rotten scoundrels?

Are the disabled people of Britain today ‘Dirty Rotten Scoundrels’ as the media and politicians suggest?

I was reading an article as I had five minutes to myself this morning which just confirmed my thoughts on what the current atmosphere is like about disabled people in Britain today.  Newspapers, politicians and an increasing amount of prejudiced, moronic public are firing shot after shot at people who are not able to fire back.  As a supposed civilised society surely we should be taking care of the young, the elderly and the sick?  It seems that those values are thrown to the wind in today’s economic climate where cutting benefits and services for disabled people is deemed as the best possible course of action for facilitating change.

ATOS PROTEST BANNER (Photo credit: Edinburgh Coalition Against Poverty)

The numbers cited in the media and by politicians say that 30% of claimants are fraudulent and yet the 40% of claimants deemed fit for work by Atos, the outsourced company dealing with the claims, are going to tribunal with 40% of those having the decision overturned.  A lot of disabled people use their payments to pay for extra costs they incur to go to work and with a reduction in this type of payment the government would only succeed in raising unemployment figures as the support would not be there for these individuals to continue working.  The agenda looks to be to shut away all disabled people in their homes as they cutback on vital services that allow them to go about their daily lives with dignity and respect.  As a disabled man myself this is worrying enough but as a father of a disabled daughter as well it scares me to think about the legacy we are leaving for our children.

We have a media that uses terminology such as ‘benefit scroungers’ and ‘cheats’ implying all disabled benefit claimants are fraudulent.  We have politicians who are closing the Remploy factories making disabled people unemployed yet they open a new office elected fund to entice disabled people to stand for election.  Surely the government realises that closing the Remploy factories is going to leave a large number of disabled people unemployed and with no incentive for employers to take on these workers or even to cover any adaptations that may be needed to allow a disabled worker to be employed, they have simply saved money in one respect to pay it out in benefits in another.

My questions to you folks reading is this are:

What is your take on the current situation for the disabled people of this country?  Do you think these cuts are appropriate? Do you feel that there are a large amount of fraudulent claimants? Should the Remploy factories be closed? Do you think the disabled are dirty rotten scoundrels?

I apologise if the post seems a touch like a rant but it incensed me so much I felt I needed to talk about it.

I promise my second post for today will be on a more cheerful subject!

Until then Stay safe and keep smiling!

Related articles

• Disgraceful! The myth that criminals are claiming sickness benefits | Sue Marsh (guardian.co.uk)
• Britain is losing its sense of decency when it comes to the disabled (blogs.independent.co.uk)
• Inaccessibility pushes disabled people further on to the edges (guardian.co.uk)
• Disabled people slam media libels (morningstaronline.co.uk)
• Disabled access fund gets mixed response (morningstaronline.co.uk)
• DLA reform: coalition is exaggerating benefit fraud for its own benefit (guardian.co.uk)

My top 5 tips for losing weight

Hi again folks, Day 7 of the Ultimate Blog Challenge

I wanted to take the time to let you into some of the small steps I have taken in my weight loss journey so far.

Top right – 315 lbs, top middle – 308 lbs, top right – 301 lbs,
Bottom right – 301 lbs, Bottom Right – 294 lbs

In the top right photograph I was at my 10th wedding Anniversary 3 years ago weighing in at 22 1/2 stones.  This was the heaviest I have ever been and it was a big shock to see this photograph when I decided to write about it for this blog.  I hadn’t looked at these pictures for such a long time and it did me good to see the difference I have made up to date.

To give you a little bit of back story I have had a really bad relationship with food ever since I hit my teens and it carried on for many, many years. I was diagnosed with Binge Eating Disorder in 2001 and I underwent Cognitive Behavioural Therapy to try and teach me ways to overcome some of the trigger situations that caused me to have binge eating episodes.  I spoke about my binge eating in one of my earlier posts Eating my way to an early grave so if you are interested in reading some more you can see how it affected me there.

I have tried every diet under the sun and I would give absolutely anything a try if I thought it would get me to lose weight.   I have tried point counting, calorie counting, cabbage diet, soup diet, Atkins diet, Slimfast, Cambridge diet……..you name it I will have tried it at some point or other.  I had developed diabetes, high blood pressure and I was  under constant pressure from the doctors about all of the things that I was at higher risk of developing.  I felt so terrible every single day thinking that I was fat, ugly and I was so self-conscious that there were even days that I wouldn’t even want to see my family members.  My love life was affected terribly because I couldn’t bear for my wife to even look at me, let alone touch me and it would drive me to tears almost every time I walked past a mirror or I could see my reflection.  It wasn’t until the beginning of this year that I really decided to get serious about losing weight because I was so fed up of the way that my life was going and the only way it was going to change was because of me and nobody else.

(Photo credit: Wikipedia)

In January of this year I decided to enrol with Slimming World at a group that was starting up very close to me.  The day I went to walk through the doors I was petrified.  I was expecting to be stared at, whispered about and it almost gave me a panic attack when I walked into the room.  The consultant came and spoke to us and we went and filled out the forms and listened to what he had to say.  The consultant was fantastic, he made everyone feel at ease and was very supportive when anyone asked any questions.  We sat through the group and all of the awards for those who had lost weight and then it came to our turn once the group had finished.  I stepped on the scales and was pleased/mortified all in one that I was 20 stones 9 lbs (289 lbs).  I wasn’t as heavy as I had been but I still hadn’t made much headway from my heaviest weight when I had promised myself I would do something about it.

In the first 3 weeks I managed to lose 9lbs in weight and I was feeling pretty good.  I wasn’t feeling hungry, I didn’t really have to change a lot of what I was eating except to cut out most of the sweets, chocolate etc.  but I was still allowed to eat a certain amount because of my ‘syns’ allowance.  On week 4 disaster struck and I gained 1 lb.  When I look back in hindsight I laugh at this but at the time it was devastating, in previous diets that would have been enough for me to stop the diet all together (yes, seriously it would!).  My consultant was very supportive though and reassured me that there was nothing wrong and looked at what I had had to eat that week and we identified that I had used too many syns.  So feeling refreshed I left the group with determination instead of defeat in my mind.  The next week I came back and lost 4 lbs altogether.  I was over the moon because a little perseverance and support meant I was back on track.  By March 5th I had reached my 1 stone award and I was losing every week until I hit a period from March 19th to 23rd April.  During this time I either stayed the same weight and on the last week I put on 4 lbs because it was my birthday.  I was very frustrated by this but I realised that I hadn’t been following the plan properly and I drew a line under it and decided to view the next week as my ‘first’ week back on plan….

This is when something clicked with me and I started to look at my portion size and how I was eating.  I realised that I was eating a portion size that was way too big.  It was when I started to look at the portions in the Slimming World magazine and the cookery books that I realised I was eating around 2 1/2 portions instead of 1.  I also started to drink a 500ml bottle of water just before each meal and I was drinking a bottle every time I felt hungry between meals as well.  I started to realise that I wasn’t actually hungry, I was dehydrated.  The water just before meals meant that I started eating a lot less at meal times and I wasn’t snacking anywhere near as much.   That week I went back to group and had a 10lb weight loss.  Yes, you did read that right a 10lb weight loss in one week!  Now I know that this is not a normal week but it just showed me that I was doing something right this time.

My slimming awards so far!

ON 14th May I received my 2 stone loss award and that was when I knew I was in this for the long haul.  I had finally broken the back of the eating plan and it had become second nature to me.  Even when I was eating out I had found I was asking for vegetable side dishes when normally it would have been chips, I wasn’t having a desert and I had gone from a 3 course meal to barely being able to finish a main course.  My diabetes had improved significantly and I was feeling so much better in a mental capacity as well.  I had lots of support from the group members and I was actually starting to give people lots of support when they were having difficult weeks.

This is me from the side with a 3 stone weight loss

The best feeling in the world was on 25th June when my consultant handed me my 3 stone award.  I have, up to now, lost the most weight that I have done on any diet so far.  I am the lightest weight I have been in over 9 years!!!  I feel so much more confident, even to the fact that I am going to be going swimming this Sunday evening at a special disabled group.  I have wanted to go swimming for so long and I am actually excited at the fact I could be doing something fun with my family for the first time in so long and I get the benefit of getting some exercise in as well.

This is a front view of me with a 3 stone weight loss

I am only at the beginning of my journey but I have managed to lose 1/3 of the weight I need to lose to get back to a healthy body weight. I have lost 8 inches off my waist and 2 and a half inches from my neck.  I still aim to lose another 6 stones but I take each step half a stone (7 lbs) at a time and I know I will get there.  I am enjoying the food I eat and I have changed the way I think and what I eat just by doing it slowly and each little step at a time.  I think that is what has been key for me so far and the wonderful support of the people in my group has kept me motivated makes me want to keep doing it and to get to my target weight.

So my top tips for weight loss are:

• Drink plenty of fluids.  I drink around 2-3 litres of water per day but tea, coffee and sugar free drinks count as well.
• Look at portion size.  I was eating roughly 2x the amount that I should have been eating.
• Make sure you are eating plenty of fruit and vegetables.  Most of my meals are made up of vegetables now and it does make a difference.
• Cut down on pastry, cakes and sweets.  Eating these things is fine for a treat but be careful a treat doesn’t turn into a regular occurrence.
• Try to vary what you eat.  Eating a wide variety of foods will stop you getting bored but will also benefit your weight loss.

Do you ever feel tired,I mean really tired?

Well hello again folks, Day 4 of the Ultimate Blog Challenge

Picture the scene:

You wake up in the morning, turn off your alarm clock, swing your legs over the side of the bed into your slippers and make your way into the bathroom.  You brush your teeth and step into the shower where you get washed and wash your hair. You get out and towel dry yourself and make your way into the bedroom where you pick out some clothes to wear.  You put on your underwear, a pair of trousers and a top before reaching down to pull on your socks.  Finally you put your shoes on and head into the kitchen to make some breakfast.  You put some bread in the toaster and pop it down while the kettle boils.  You head to the front door and collect the newspaper and bring it back to the kitchen where you sit and eat your breakfast.  You finish up and wash the cup and plate and then put on your coat before heading out of the door to work.

Sounds like a typical morning for most of us wouldn’t you agree? It certainly seems like the normal to me and it was what I used to do.

This is what 60 hours of not sleeping looks like!

This is how my morning starts out these days:

I wake up in the morning stiff and in pain, turn off my alarm clock, swing my legs over the side of the bed and wait for 5 minutes while the wave of muscle spasms subsides and I can stop clenching my teeth, I slip my feet into my slippers and hobble my way to the bathroom.  I brush my teeth and have a flannel bath as I can’t step into the shower as I can’t step over the side of the bath (I have done this for almost a year now but this will change soon as we get our bathroom adapted). I don’t wash my hair now as I have it shaved to make things easier. I make my way back into the bedroom and have to sit on the bed for 10 minutes while the pain subsides enough to let me stand again.  I choose out some clothes that I want to wear (or my wife dies it for me) and prepare myself mentally for the slog to put them on.  I put my feet into the underwear and try to raise my legs to help pull them up as I can’t bend down, again it is the same with the trousers. I take 5 minutes rest as again the pain intensity is so severe I want to cry.  I put on a top by trying to ‘shimmy’ through it as I can’t stretch my arms up properly above my head.  Then I call my wife to come and help me to put on my socks and shoes as I can’t pull them on or tie the laces myself.  I then head into the kitchen to get a bottle of water to take the first painkillers of the day. Morphine, Gabapentin, Paracetamol and Acupan totally 8 tablets for the morning.  I fight back the nausea from the medication and the pain before I slowly lower myself to sit down.  I struggle to eat the breakfast my wife has made before hobbling through to the living room where I can sit on a specially adapted office chair. This is where I have to spend most of my day as there aren’t any other comfortable seats for me to sit on.  By this time I am utterly exhausted and the pain is slowly dulling from a roar to a manageable ache as the medication starts to work it’s way into my body.

One of the rare chances I got to get out on holiday in Malta

This is what I would say is a fairly typical morning for me.  Sounds rough doesn’t it?  Well picture that same morning adding the fact that I have 2 daughters who need to get ready for school and have breakfast and one of those daughters has a severe developmental delay meaning she can’t do anything for herself.  She is 9 years old with the mental capabilities of a 2 year old. Also consider the fact that she has sleep disturbances frequently and I have insomnia which often means we wife can get approximately 2-4 hours sleep per evening if we are extremely lucky.  I typically get 2-3 hours if I am extremely lucky but quite often I am awake for 2-3 days straight.  So that is probably the first small part of the day for most people but it is a military operation in our house.

I don’t want sympathy or pity for what we have to go through, it is just our life.  We have to get on with it and deal with it.  We just make do with what we have and plough on through the daily routine as best we can.  What I do ask for is some understanding and recognition. I ask that you understand that it is not something we choose to do or have to go through.  It is not that I can’t be bothered to do anything, it is because I physically CAN’T do it.

I was sent a link by a friend today (she blogs over at Savour your spoons) who suffers from Hypermobility Syndrome and also struggles with chronic pain.   It was a link to a Youtube video that showed somebody talking about all of the things that healthy people say to sick people.  It is an example of what NOT to say, you can view the video here:

This was done in humour but you would be surprised at how many times I have heard these comments from doctors, family members, friends etc.

Aside from the physical pain there is also the mental pain.  I have had to stop playing Bass guitar in bands because I could no longer stand or move the equipment, I can’t go out for a walk with my kids, I can’t go swimming because the pain I have just getting out of bed means I often struggle to get out of the house, I can’t go to family parties as I can’t sit or stand for any length of time, I can’t work for the same reasons and I am going to have to give up my studies as the medication I take now affects my memory and concentration so much that on certain days I can’t even remember what I did an hour ago.  Adding to this is the fact that they can’t tell me why I have all of this pain, I get no rest and feel trapped in my own body which has become a prison of pain.  I admit it can get depressing and it gets pretty darned bleak at times. I admit I have sat crying in the middle of the night wondering what lies in store for me and whether my wife is going to have a breakdown having to look after me and my daughter so much.  Then I think about my daughter and how sad I feel about her having to care for me and her little sister as well because it isn’t fair on her.  I am a parent, I am supposed to care for her and do things for her.

As I say I am not asking for pity and I am not asking for special treatment.  What I do ask is that you consider that there are people out there who have a hidden illness or disability who can look exactly the same as you but could be dealing with something you simply can’t understand.

Sorry if I sound a bit preachy with this post but it is something that I think I have to say to get it out of my own head and into the world in the hope it will make people stop and think.

Thanks again for your support folks and until next time, Stay Safe!

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!

Diabetes check update

Just a quick update…..

Just a quick update on my diabetes check that came today. My blood sugar has reduced dramatically to a great level so they have decided to reduce my Metformin medication by 2 per day! This is awesome news and just shows how much losing some weight is doing for me so far! It definitely keeps me motivated to keep going. For my next update I reckon I should maybe go into a bit more about my back pain and some of the medications I take and the effects they can have.

Until next time Stay Safe!

And breathe……..

Hello again folks

Well my final assessment for my University module has been zipped and submitted.I have been like a bear with a sore head and it has driven me up the wall but I am so pleased it has finally gone.

I said to a friend I would write about some of the side effects of my stint of 60 hours staying awake.

Staying up for that length of time has some serious physical effects that are a major pain in the backside. For example the first thing that comes is the dry, tired and sore eyes that sometimes crack or get really dry skin around them.

Then the next thing that comes is the headaches. Now these headaches are some of the most painful ones I have ever suffered. They start as a dull ache across the back of my head and then spread to the front of my head and make me feel like my head weighs about 3 times as normal.

Then the stomach cramps start and it usually leads to some really bad constipation or diarrhoea which can last for a couple of days.

Finally the ulcers come. These are really sore and there can be so many and I also get them on my lips making them swell up like I have been punched in the face.
It usually takes 3 or 4 days for all of these to settle down and I start to feel well enough to function properly again.

So this coupled with the pain meds I have to take and then also caring for my disabled daughter means I have a very hectic life at times as well! But I will start to cover some of that in a future blog.

Until next time Stay Safe!