Busy, Busy Bees!

Posted on November 29, 2012 by Sleepless In Newcastle

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!

My hidden illness: 30 things you may not know

Posted on August 26, 2012 by Sleepless In Newcastle

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!

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?

Posted on August 24, 2012 by Sleepless In Newcastle

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!

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?

Posted on July 25, 2012 by Sleepless In Newcastle

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!