SWANderful days out!

Hello there folks, I thought that I would write a post about having an undiagnosed child and the support (or lack of it) that we have been able to find for our family.   Nobody ever seems to be forthcoming with this kind of information and it is something that is vital for any family who was going through a similar situation as the one that we deal with on a day-to-day basis.

When Pretzel was officially determined as disabled, we were given no information on any kind of support groups, families or any other kind of services that could provide us with support, guidance and help in dealing with the news. Even now, because Pretzel has no official diagnosis, help can be sporadic and also withdrawn for any number of reasons, whether it be funding or that she did not ‘ fit the criteria for their charity to be able to help.’

There are a number of organisations local to where we live who attempt to provide day trips and outings, play areas and other recreational activities for disabled children, however, not all of these places or activities are suitable for children who have extensive special needs or those who do not like busy and noisy environments. This is the reason why families with children like Pretzel often feel isolated, cut-off and that they are dealing with their problems on their own.

This is why the idea that Swan UK has had of creating separate groups for each area of the country (we fall under the north-east category) means that families local to one another can get together in a social and caring environment which caters for all of the children and their particular needs. My family recently attended a North-East get-together for a picnic in a local park and it was fantastic to get to know some of the faces behind the forum names and also meet the children and let them play together with no form of judgement or ‘sympathetic’ looks that make the children and their families very self-conscious.

It was amazing how quickly the children engaged with each other and also how quickly the families started talking to each other about all kinds of aspects of caring for the children but also everything that they like to do that isn’t involved with caring for the children. This last point is probably the most important because when you deal with children with complex medical or physical needs can be very tiring, it can bring your energy very quickly and can often lead you to use shying away from social interaction of any kind with anybody including other members of the family and friends.

It is saddening thought to think that there are not more places but can offer this type of help to families in our situation but it makes me feel hopeful that organisations such as Swan UK can provide such an opportunity for children and their families to do activities together but in an environment where there are other families experiencing the same situation the same worries, the same anxiety and often the same opinions on how to get through the toughest of days that others who are not in this situation can find difficult even to imagine.

It is funny to think that a network of people who’ve never met each other, or, who have had very limited contact with each other, can be so close to each other as a family. Swan UK has a fantastic group of members who send birthday cards, get well soon cards and who offer words of support to each other through the good times and bad times 24 hours a day, seven days a week, 365 days a year.  The sad thing about this is that this type of support relies on charity and donations and is not something provided by the government. It often demeans carers and also the people they care for to have to rely on charity to be able to purchase essential equipment, services and facilities.

I do hope that Swan UK managed to secure the funding for these local get-togethers as it has been the first time that my family has been able to go out and enjoy themselves without any kind of ill feeling or embarrassment to simply ‘be who they are’ and be understood by other people’

We have another meeting on 1 December this year where we will be attending the Alan Shearer activity centre in Newcastle which has the facilities to allow our children to play in a hydrotherapy pool, ball pool and soft play and a sensory cave together.  This will probably be the only opportunity for our children to experience this kind of phone over the Christmas period as it is often difficult for us to organise all of the essential things that we need to be able to take pretzel out to enjoy these activities on her own.

If you would like to help out Swan UK and support their wonderful work which includes these types of days out and activities for children like pretzel to enjoy, then you can donate at: https://uk.virginmoneygiving.com/fundraiser-web/donate/makeDonationForCharityDisplay.action?charityId=1002602&frequencyType=S

If you do make a donation then please could you please comment in the Message Box stating that it did for Swan UK. That will ensure that your donation gets to the correct part of the Genetic Alliance.

Thanks for listening folks,

until next time Be Safe and Keep Smiling

Related articles

• South West Christmas Party
• SWAN UK Summer of Fun
• Camp Amazing!
• Waterbabies Grants are GO!!
• SWAN UK Funday number 2!

Band Life and Late Night Reminiscing….Is it a good thing?

I had the usual insomnia problem again tonight but after having a really bad week I am not really surprised.  I have spent most of my ‘free’ time listening to music and trying to listen to a different band each day.  We managed to get some relief from our school holiday hell when Zanna’s mum came over and watched the kids for a couple of hours while we caught a movie.  Even that small amount of time was just enough to stop me from going insane with Pretzel and her constant squealing all day and night.  I haven’t even had the energy or brain power to post in the past couple of weeks at all.  We also received some information that was a bit of a shock about Pretzel’s condition which has left us a bit stunned and shaken so we are still coming to terms with what it may mean.  Music seems to help me to deal with a lot of things and I thought I might share some of my experiences with you.

Photograph by Shirlaine Forrest

The Band Member: An old incarnation of me

As I was sitting at my computer I decided to have a flick through my many music files and I came across some of the old music files that my old band recorded before I left and got a lot worse with my chronic pain.  I used to eat, live and breathe the band life and I was in love with it.  We once travelled from Newcastle to Colchester music festival and back in a single day which was around 5 1/2 hours just get there, we played our set and then turned around and drove back for 5 1/2 hours.  It was challenging but we all had a good laugh together and it is something I miss with all my heart.  It is only when listening to the tracks that we recorded that I realised that I have not been able to look at my Bass guitar or even pick it up to play since I became officially disabled.  I find it too hard to think about how I used to jump and bounce around a stage playing my guitar compared to the guy who can’t stand without being in extreme pain.  I almost sold my gear a little while ago but something inside me just couldn’t and I don’t know why.  Maybe something is telling me I might get back to playing again but then part of me says that I shouldn’t torture myself with it still being in my house unused.

Photo by Suzanne Addison

The other sad thing I realised as well is that ever since leaving the band I have lost touch with the guys I used to spend so much time with.  I still have them as friends on Facebook but something always crops up to distract me every time that I think about getting back in touch with them.  I guess it is the price I have learned I have to pay as a disabled guy and a parent of a disabled child who spends so much time in a carers role.  It is that same problem of being ‘trapped’ in a life where socialising revolves around appointments for myself and my daughter and the limited contact that I can manage with people via the internet.  It is one of those things where I am not sure if it is me making excuses and hiding away from the world or if it is the world hiding itself away from me and the problems and difficulties I have in my life.

Is there a way back for me?

So now I am sitting with a lot of questions about my life once again.  I love my music and I love playing musical instruments but realistically is there any type of performing that I could do with my disability that lets me play the music I like?  I am not sure there is to be honest and it has me wondering if I should think about selling my equipment and stop torturing myself with a life I am not going to get back to?  Should I look at other musical outlets that are more achievable like singing instead?  I feel that losing music altogether is a step that I don’t want to take as it has been part of my life since I was 5 years old.  I miss going to the gigs, the feeling of joy once the gig was over and that buzz that surges through your body, energising it to the core.  I miss the rehearsal room, the comradery between the band members, the stories that we could tell about gigging and the pleasure of entertaining people.  I suppose most of all I miss the guys who were in the band with me and their families and friends who used to come down and see us at every gig.  They became like adopted family and friends to me and since my life became so hectic I lost touch with them too.  I am not sure whether trying to get in touch with everyone again is a good idea or not?  Any suggestions?

So as a treat here is a link to a couple of the tracks that I used to play on with the band Caplyn about 7 years ago now.  The band carried on under the same name and they have a new line up.  You can see them by visiting their website over at http://www.caplyn.co.uk

The songs that I played on in my time in the band are here:

Old Caplyn Myspace Account

 

So there you have it, a little more information about me and one of the things I used to / still do love to do in my spare time.  I hope you enjoyed the tracks and if you do get the chance to go and see the band Caplyn live, get yourself down because they are a great bunch of lads and you will have a great time.

Until next time folks, Stay Safe and Keep Smiling!

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)

Superwoman: A dedication

‘Superwoman’ by the amazing Alicia Keys is the song I would like to use for today’s Wordsmith Wednesday.  Alicia Keys is one of the artists that I really admire for being able to write such beautiful songs and perform them with such emotion.  I particularly like this song because it reminds me of two things that are close to my heart.  The first is my beautiful, hardworking and doting wife.  She is truly a superwoman for what she does.  The second is the lovely ladies that I have met through SWAN UK.  These ladies who are mothers, grandmothers, aunts and sisters, have to go through so much and deal with so many things that a lot of people couldn’t even comprehend.

Superwoman is Fighting the Fight….

For all the mothers fighting
For better days to come

When you have a child with such profound difficulties as a SWAN (Syndromes Without A Name) child does you need to fight every single day for absolutely everything.  Because you have no diagnosis, nobody is willing to listen or help you straight away.  They want you to justify absolutely everything that you ask for, no matter what that is, and often you are looked down upon as trying to ‘scam’ the system.  This results in having to go to numerous different sources and collect information to pass on to get the help that other conditions often receive with no questions asked.  The ladies who care for SWAN children fight every single day because they have to first ensure their child is cared for and catered for in the correct way and then start to deal with the mountain of paperwork, telephone calls and letter writing that has to be done to get their child some help and recognition in the system.

When the going gets tough……

Even when I’m a mess
I still put on a vest
With an S on my chest

As you can imagine these ladies get exhausted physically, emotionally and mentally from having to deal with so much pressure from every direction but they can’t afford to stop for a rest to recuperate because something always needs to be done.  Instead they pick themselves up from the ground, dust themselves off and get right back to the slog of doing what needs to be done.  I have witnessed some of the ladies there being physically injured and badly needing recuperation time to recover, yet, they still put the effort in and deal with the complex difficulties that their children have.  There is no opportunity to shirk that responsibility as it is the single most important thing to them.

Superwoman SWANS together can fly so high…..

When I’m breaking down
And I can’t be found
And I start to get weak
Cause no one knows
Me underneath these clothes
But I can fly
We can fly, Oh

I have seen these ladies all, at one point or another, reach the very limit of their capability to cope with their situation and they need to talk things out or vent their frustrations and they do so on the SWAN UK Facebook group.  A wonderful thing then happens where each of them band together and lift the spirits of the ‘injured’ SWAN lady and offer their support, kind thoughts and well wishes until she feels ready to ‘fly’ once more on her own.  The fantastic thing is that these ladies are never alone, that goes for the SWAN families as well, because once they make themselves known they are just a click, call or text message away from a countrywide support group.  It is truly an amazing thing to witness and it often has me speechless with how affectionate and caring every one of them can be.

Superwoman saves the day….

Cause I am a Superwoman
Yes I am
Yes she is

These ladies truly deserve the title of ‘Superwoman’ and they should get the recognition and appreciation that they deserve.  Sadly they probably won’t get the attention, thanks and praise they deserve but that will not deter them, they will still ‘Put on that Vest with an S on the chest‘ and carry on regardless because they have to.  They are carers, admin workers, specialists in medical care, advocates, charity workers, event planners and fundraisers.  Most of all though they are truly amazing people who are made of the strongest of stuff and will not be broken.

Well there you go, that is my take on ‘Superwoman’ by the fantastic Alicia Keys.  I hope that you enjoyed it but I would also like to hear your tales of any ‘Superwomen’ that you may know who deal with a lot of things that they never complain about and most of us would shy away from.  Are you fortunate enough to know someone like that?  Do you know someone who deserves recognition for dealing with a tough situation?  Tell us all about it, give them some praise and recognition and let the world know how super they really are.

Until next time folks, Stay Safe and Keep Smiling!

Related articles

• Superwoman Syndrome! Do you suffer with it?! (crescenttherapyandassessment.wordpress.com)
• Rita Ora looks up to Beyonce as ‘superwoman’ for juggling career and motherhood (standard.co.uk)
• First Look: Alicia Keys Gets Sleek For “Girl On Fire” Album (Peep Her Fierce Style!) (styleblazer.com)
• “An Average Woman in a Superwoman World” Launches New Website (prweb.com)

New ideas and a fresh outlook….

Hey folks, I am back with a new outlook for the week, the year and for my whole life!  In fact this post is going to be the first of many that I will be linking up with another blogger called Melissa over at The Bright Side blog.  She hosts a series called LML (Love my Life) on a Monday and you can read about it here.

First I want to say sorry for the lack of posts last week but things have been absolutely manic for us with the kids being on their school holidays.  Pretzel decided she would scream at us all day, every day because she has been taken out of her routine, Manga has been getting bored because she has had nothing to do and my sleeping and pain have been giving me a right battering as well.  All of this together does not add up to a happy, energetic Keith!

 Time for a new beginning

Life isn’t about finding yourself. Life is about creating yourself. -George Bernard Shaw

 This quote from George Bernard Shaw is one that I will look to for inspiration in the future when I am feeling stuck in a rut or when I need to try something new in order to change the direction in which my life is heading.  Too many times in my life I have talked about finding out who I am and what I want and I have even written about it on this blog.  Then I was reading a book that I bought recently that had this quote in it and it made me rethink the strategy I was using to try and change my life for the better.  Instead of looking backwards at the things that I used to dream about and where I wanted to be when I was younger, I have decided to take a different standpoint now and create a ‘new’ me.

You will never win if you never begin. -Helen Rowland

There isn’t just a new beginning for me at this moment in time though, my whole family is starting new things this month.  Pretzel will be getting a new one-to-one worker who will be taking her out on small trips during the week to give us a little bit more free time to do things for ourselves.  This is something we have been looking forward to for a while now because it means we can spend a little more time and attention on Manga and also gives us a chance to spend a little time with each other.  We may even get chance to have a regular ‘date night’!

Manga is starting secondary school in the next couple of days as well which she is so excited about.  She absolutely loves school and hates the fact that she has to have school holidays, especially when they are as long as this one in the summer.  We are so proud of her because she got her results back from her SAT tests and she aced all of them, even getting a grade for Maths so high that they don’t normally hand it out! A new school for her is an exciting prospect, but I have to admit it is a double edged sword for me because my little girl is growing up and it is hard to ‘let go’ of my little girl and embrace the young woman who is now in my life.  I think it is especially as the difference between her development and Pretzel’s development is so markedly different.  It is hard not to compare each of my daughters with each other but it is something I am going to have to learn to adjust and adapt to.

Jaffa is starting 6th form college in a couple of weeks to study Information Technology, Child Development and Health Studies.  She has said that she wants to work with children like Pretzel and I think she will be fantastic at it as well.  She dotes on her little sister when she comes to visit and she has a very calm way of dealing with things.  She also got fantastic results with her GCSE exams and had some very high marks as well.  It must be something in the water that is making them all so smart!

And now we move on to myself and Zanna.  We have got some new courses that we are going to be taking to give ourselves a break away from the house and, hopefully, might lead to some new and exciting things for us.  We are both starting a photography course which is something we have wanted to do for a while.  We often see other families with beautiful photographs of places that they have visited but we always end up with blurred, fuzzy pictures.  The plan is to do this course and then go crazy taking pictures of anything and everything so we can start using them for this blog and other things we are planning for the future.  After we have finished that course we are going to be going on a creative writing short course so that we can learn more about how to create stories and characters.  We are planning to write some books for children and possibly even a series of books giving information about life as a parent of a SWAN child with an undiagnosed genetic condition.  On top of that I am continuing my studies with the Open University and I have changed my degree to study creative writing as well.  It is something that has become my passion and, as well as writing this blog, has taken up the majority of my time over the past few months.  I am busy working on some ideas for some short stories, poetry and I am also looking into doing more research on an idea that I have for a non-fiction book as well.  I have decided that I will write under a pen name though as I don’t want to influence people about myself, my family or my friends when they read anything that I write.  I may decide at a later date that I want to reveal what my pen name is but for the meantime I will be keeping it under wraps.

So there you have it, those are our new ideas and our fresh outlook to the remainder of this year and beyond but I want to know what you have planned for the rest of the year and beyond as well.  Are you starting any new projects? Have you decided to have a new outlook on life?  What is motivating you to go forward into the winter months?  Drop me a message in the comment section and let me know.

So until next time folks, Stay Safe and Keep Smiling!

Related articles

• Quote of the Week: Creating Yourself (cultofajracewood.wordpress.com)
• Life changes, are they important? (keithaddison.co.uk)
• Inspiring Quotes on Change (thebrightersideoflife.ca)

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)

Life is definitely no smooth road

Life is definitely no smooth road – Motivational Monday

Life has no smooth road for any of us; and in the bracing atmosphere of a high aim the very roughness stimulates the climber to steadier steps, till the legend, over steep ways to the stars, fulfills itself.
W. C. Doane

I love this quote as it is one of those that I can always come back to when I feel life is getting on top of me and things are looking at their worst.  Last week was a particularly bad one for me and the family as we had quite a few setbacks which had us feeling pretty beat up and dejected by the time it came to the weekend.  We had all already been feeling pretty tired from the usual daily routine that we have and we were looking forward to the monthly respite break that we are entitled to through our local council services.  We planned on having a relaxing time doing pretty much nothing because we needed to gather up some well needed energy in order to prepare ourselves for the nightmare that is the final 2 weeks of the school summer holidays where there is no daycare provision for Pretzel.  We always try to prepare for this time in the holidays the same way each year because we know how distressing it is for Pretzel being thrown out of her regular daily routine of going to school for a very long 6 weeks.  She normally responds to this by getting very irritable and basically whinges and screeches from the moment she wakes up in the morning until the moment she goes to sleep at night.  That is why it is so important that we get some rest for the onslaught that is the final 2 weeks.

So we were all ready to send her off for respite on Friday for the weekend and we wouldn’t be picking her up until after her play scheme finished on Monday evening and we were looking forward to the resulting R&R when we got the ‘dreaded phone call’.  Now I need to take a little time to explain this to you and tell you what ‘The Dreaded Phone Call’ is.  This is when we have dared to make some kind of plan, no matter how small, to do something and then we get a call from wherever to say that we have to come and collect Pretzel.  Now through the years we have had ‘The Dreaded Phone Call’ from schools, play schemes, one to one workers and family.  It might seem like something you think we would expect and this is where our problem lies……you never expect it and you ALWAYS expect it.  It becomes really difficult to make a plan as we have to be prepared both physically and mentally to have the rug pulled from under us at any moment in time and for whatever reason.  Sometimes there may be a phone call, sometimes there may not be, but you can guarantee that when you least expect it to or when you least want it to happen that it will happen.  So on came this Friday when plans were to have our rest……

So exhausted today. It has been a rough week and now the chronic pain is kicking my backside 😦

Sometimes I wish I could reverse the last 8 years or so and look after myself a little bit better in the hope I wouldn’t be here in this pain today. I suppose it is always the case with hindsight.

I still have this anticipation though that something is waiting in the wings to kick me in the nuts again though as we are just about empty on our energy.  We were dying for respite to come around today only to find it looks like Pretzel might have sunstroke from being out with play scheme yesterday so we are hoping that she is o.k down there. The staff are fab though and we know they will be looking after her. They still might ask us to go and pick her up yet though which is a worry….

This was my Facebook status from Friday just after we had dropped Pretzel off at the short break care unit and yup, you guessed it, after just 2 hours we got ‘The Dreaded Phone Call’ and had to go and collect her to take her for an emergency doctor’s appointment as the staff had said they could not get her to wake up for something to eat and she was feeling very hot.  Lo and behold we found out that she had a water infection which had sent her temperature skyrocketing up to around 39.8 degrees.  This is always a danger sign for her because the last time that we had this type of infection it triggered seizure activity in her and we almost ended up losing her because the seizures wouldn’t stop even after emergency medications and she has had kidney reflux problems in the past which has left some scarring to her kidneys.  So, just as we were down at our lowest and most tired we had been robbed of the chance to recuperate and get ourselves prepared for the hectic couple of weeks we know are coming so very soon.  The worst thing about this type of problem with her is that it means one of us usually has to stay awake through the whole of the night while the other tries to get some rest to deal with her during the day times.  It is only through these types of shift style caring for her that we can manage to get through things.  I decided to stay up with her this time as my Insomnia is usually an advantage in this situation and it means Zanna can get some much needed sleep to deal with Pretzel and Manga during the day.

Fortunately we managed to get through the weekend without any seizure activity and Pretzel did manage to get off to play scheme today which was a much needed break for us but we are still having to try and brace ourselves for the last 2 weeks which will be the next fortnight only now we have the trip to hospital that will result from the water infection because of the history of kidney problems to look forward to as well.  I am sure it is going to be a struggle but somehow, in some way we will get there.

I appreciate that this post may seem to be on a bit of a downer but there is a point to me telling you all of this about this past week.  Even when myself and my family are going along the roughest of roads it seems there is something that gets us to pull together, no matter how tired, stressed, annoyed or upset we are and we get through to the other side to live another day.  Each time we hot a rough patch that I am sure would throw some families and other people to the ground, we manage to keep a steady footing and slowly, but surely, we get out the other side and we are much stronger for it as a result.  It seems that no matter what life throws at us we seem to dig deep, suck it up and tackle it together, as a family and it makes us stronger, richer and more thankful for everything that we are able to do and achieve every single day.

So what I would like to know from you on this Motivational Monday is this:  How do you cope with the things that life throws at you?  What keeps you motivated to struggle on when you think you can’t?  Do you have any quotes or inspirational stories that you read when you need that extra kick?

So until next time Stay Safe and Stay Smiling!

Related articles

• SWAN UK children get Gold Medals for Olympic feats (keithaddison.co.uk)
• Respite Care 🙂 and Med Changes = Happier Times! (caregiving.com)
• Is chronic pain in the brain? (blogs.abc.net.au)
• Elderly carers to be given respite holidays (ananursinguk.wordpress.com)
• Wales News: Families protest against withdrawal of nursing support (walesonline.co.uk)

Getting Sentimental:10 things I miss, what are yours?

Getting Sentimental

I was getting sentimental today as it is my 13th Anniversary of being married to the wonderful woman that is my wife.  We have been together for 15 years in total which absolutely scares the pants off me.  It is only when certain things like these types of celebration come up that I realise just how much time is passing by.  My eldest daughter is 17 this year and starting 6th form, my middle daughter is 12 this year and starting secondary school and my little SWAN is 9 years old and growing to be rather huge to what I ever remember.

I think the biggest shock though is when I look at some of the ‘music’ on TV and I don’t recognise any of the songs or the pre-pubescent ‘singers’ who are gyrating around on the stage in virtually no clothing (if they are female) or talking about what they want to do to the half-naked girls on stage if they are male.  So I have to ask this question……

WHEN DID I GET OLD?

Me today in reality

I used to sit and think that my parents where old and stuffy when they would criticise my clothes or music and it is something I have found I am doing on an ever increasing basis recently.  Then it made me realise there are a lot of other things I miss from when I was younger so I thought I would share them with you:

1. Common decency and manners for all people – Why is it no one gives anyone else consideration these days?
2. Being able to run about playing football or rugby all day – Now I struggle to have the energy to get out of bed!
3. Home cooked food in cafés and restaurants – I remember being able to get things like mince and dumplings, home cooked pies etc.  Now it is all about speed and cost and I think quality has decreased as a consequence.
4. Sherbet Shandy Lollies – These were similar to Edinburgh rock on a stick and came in lemon or strawberry flavour – the company that made them went out of business.
5. Cheaper prices for….well everything – It seems that no matter where you go you are charged extortionately for everything.
6. Dirty Weekends with the Mrs – Definitely no chance of these with kids!!!!!!!
7. Clubbing in Rock clubs – When the Mayfair in the centre of Newcastle got levelled to make a cinema the rock scene pretty much died for me.
8. Drinking Alcohol….specifically Jack Daniels – I am a fanatic.  No really I collect all sorts of Jack Daniels memorabilia including bottles and because of the medication I can’t any more……I still have 2 bottles in my cupboard.
9. Florida – three of the best holidays of my life so far were to Florida and it was worth going as I got to go with my extended family including my grandmother  as well as my 3 kids.  We had so much fun and never wanted to leave.  It was like home.
10. My (step)mum Joyce – I hate calling her stepmum as she was a mother to me in every way except biologically.  She was my best friend and taught me an awful lot about morals, manners and how to be a better man.  I miss her talks with me about the world and setting it to rights and I really miss her ‘Joycey’ measures of alcohol which were, in her mind, just a single shot but in reality were more like a treble or quadruple!!!  Great when it was Jack Daniels though!

How I feel today LOL

 

So that is my little list of things I miss, what would be on your list of people/places/things you miss from being younger than you are today?

Thanks again for reading folks and hopefully normal service will be resumed once I finish celebrating with my wife.

Until then Stay safe and keep smiling!

Minimal Talk Monday

Hi again folks, this is day 16 of the Ultimate Blog Challenge

Mime Monday is because I feel like I have been hit by a train today.  I haven’t slept very well for ages now, my medications are playing havoc with my insides and my brain and it isn’t very nice so I thought I would share a few things with you via a different method instead!

These are some of my favourite family photos that give an insight into the fun and games that we have together.

Sorry this was a short one but hopefully tomorrow I will be back on track.

Until then stay safe and keep smiling!

Are You Normal or Are You Special?

Hi again folks, this is day 15 of the Ultimate Blog Challenge and we are about half way through!

I must admit to feeling a little bit down and a bit saddened this morning as I sat awake (….again) at 3am pondering the world and what it had in store for children such as my daughter.When I look at her I feel all of the joy and pride that a father should when he looks at his beautiful girl and that killer smile would melt the heart of anyone but (there always seems to be a but…) I can’t help but sometimes think about her future, how she sees the world and how the world sees her. There are some really nasty people in this world who would take advantage of someone with special needs intentionally and there are also those ignorant people who make disgustingly discriminatory comments who, in my humble opinion, lower than a snakes’ belly.
I want to protect her from all of the comments like that and I want to prevent her from hearing the way people can be so cutting just because something is ‘different’. What I would ask though is “What is ‘normal’? I don’t think that is a question that can be answered really because nothing is ‘normal’. Every individual has fingerprints that are unique, your DNA is unique, your personality and how you travel through life experiences and evaluate them is unique to you. If so much of us is unique then how can we define what is ‘normal’?

I have heard so many people in various situations refer to my daughter as ‘Not like a normal child’ or ‘She isn’t like everybody else’ and it has really started to get me thinking but also it gets me quite annoyed at the same time. When my first daughter was born (my wife’s second daughter), I was a brand new parent and I had never experienced anything like what was to come. There was the crying, rarely sleeping, pooping, peeing milk monster that took over our house and drove me almost insane with the amount of times I was up through the night. Then there was the inquisitive, destruction tornado, tantrum taking toddler that followed on before becoming the even more inquisitive, book reading, highly talkative, education hungry young girl who would ask me to write sums for her while sitting at the dining table every evening. Now I have the hormonal, stroppy, highly inquisitive, education hungry ‘tween’ who is just about to start secondary school. It all sounds pretty much the usual story so far doesn’t it? Now what if I told you that same daughter started speaking in full sentences before she was 2 years old, knew all of her colours, numbers , basic addition and basic subtraction by the age of 3, read story books before starting primary school at the age of 4? Would you then say that she was ‘normal’ or highly intelligent for her age? She has just had her school results back for this year and has achieved scores well above ‘average’ for her age level and for that I am pleased and proud but it does have me thinking ‘Why is it that she is seen as ‘normal’ but my daughter with special needs is not?’
How about if I told you that I was informed that my youngest daughter would never walk, talk, or feed herself and would live her life in a vegetative state in a wheelchair for the rest of her life? (I was actually told this as well) However, she has favourite TV programmes, walks (and runs) around the house and school, hums tunes and can understand single words at times despite her many difficulties. I would say that her development compared to what was expected is not ‘normal’ but instead actually ‘exceptional’. It is a matter of perspective as to what ‘normality’ is but it still doesn’t stop those thoughts creeping into my head……

Will my daughter ever have a relationship? Will she ever learn to speak? Will she ever be able to live with minimal assistance? Will she ever experience the joys of parties, birthdays, weddings or anniversaries? Will my wife and I be able to support her into our old age when normally we wouldn’t need to? What happens to her after we have gone?

All of these things seem like worries that affect most parents of special needs kids and every parent wants to try to do the best that they can for their child. Often it is the little things that can mean the most to us which, in it’s own little way, makes us even more fortunate and blessed than the ‘normal’ parents. I remember vividly the very first time my daughter sat unaided for the first time. She did it a lot later than other children do but she did it despite everything expected of her. I can remember vividly the first time she stood up on her feet, again a lot later than others, but SHE DID IT! She defied the odds and proved that no matter what happened she was going to prove us all wrong and fight to get where she wanted to be. Every step has been a struggle but I can assure you she has been determined to make each and every one. So the next time I say somebody refer to her as ‘Not like a ‘normal’ child’ or ‘Different to everyone else’ I will enthusiastically tell them that they are right she is not ‘normal’ but she is ‘EXCEPTIONAL’ and I hope that she, along with my other 2 girls, go through their lives being just as exceptional as they are right now.

My eldest daughter is leaving school this year and had her prom recently and it got me thinking about my SWAN daughter and whether she would have the same opportunity to have one. I had resigned myself to the fact that it was highly unlikely that the children in her class would have the chance of the same experience until I saw something on Youtube. I want to leave you with this video which just made my day and has inspired me to try and make the same happen for children in my daughter’s school and, who knows, maybe other schools in the area to pay attention and organise something similar.

This cheered me up and made me realise that there are some genuinely nice people in the world and there is hope yet for children like my daughter to be recognised not for ‘special needs’ but for being just plain old ‘SPECIAL’!

 

Until Next time Folks, Stay Safe and keep smiling!