Cold and the memories it brings back

Yesterday was one of the worst times for feeling cold in my life.  We were heading to the SWAN North East get together for Christmas at the Alan Shearer Centre in Newcastle and we were really looking forward to it.

Firstly, we had to navigate the path to get to the car which we didn’t realise was covered in a film of thin ice and it almost had me flat on my back when my walking crutch slid out from underneath me.  Almost simultaneously someone further down the path slipped and hit the floor with a thud.  Luckily they were fine and I managed to get into the car without breaking my own neck as well.  It was so cold though.   It was the kind that seeps into your bones and makes you freezing cold from the inside out.  Not even the car heaters could touch how cold my ears, nose and cheeks had become.  It got me thinking about when was the worst time I had felt cold and that was when I lived in a house with my mum and sister in the Fairways Estate.

It was one of those houses which had the traditional outhouses but the outside toilet had long been put out of use, nothing was powered by coal anymore so they had become storage areas for bikes, tools and all the other rubbish that you accumulate in a house.  I would hate to think how bad it would have been to use the outside loo in the freezing cold weather we get here!  Anyway, the house was fairly large with 3 bedrooms and a bathroom upstairs and a living room, kitchen/dining room downstairs which had a passage leading to the back door and the rear garden.  The house was in fairly decent repair apart from two things,  the first being the hideous wood panels that lined the wall of the kitchen/dining room.  They were horrendous.  You know that typical 1980’s style ‘fashionable’ panels and they sat about a foot off the actual wall surface so it made the room smaller than it should be.  The second thing was the windows.  They were the really old single glazed kind of window which was divided into squares but they had another key thing wrong….they didn’t close properly.

The windows did close to a certain extent so that you could lock them but for some reason the frames were a little warped and  they had large gaps that would run around them.  This  meant that the outside temperature often dictated the inside temperature of the rooms.  We were having a really cold snap one year and that meant the cold air would seep in through these gaps into the rooms.  I was about 12 or 13 at the time and was doing what most teenagers do, hibernating in my room.

I vividly remember waking up one morning and I could see the breath coming from my mouth as I exhaled.  Looking over to the window I could see the ice that had created a film over the panes of glass and it had a distorting effect similar to that of a bathroom privacy window so nobody could see in.  It was only as I got closer to it that I realised it was on the INSIDE of the window.  Yup, the room was so cold the inside of my window had frozen.  I knew I had to get out of bed to go and warm up in the living room which was the only room that seemed to retain the heat.  Fortunately, by this point I had developed a system of getting dressed with minimum exposure.

It was a shuffle to the underwear drawer and wardrobe with the duvet wrapped tightly around my body.  A darting hand grabbed whatever clothing I could get my hands on and then it was a quick shimmy (still wrapped in the duvet) to put them on and finally a sprint downstairs to the warm air of the living room. Ten minutes by the fire was enough to warm you up and banish some of that lingering cold.

It wasn’t just the bedrooms that were cold though, imagine getting a bath in those conditions!  I think we all had the quickest baths of our lives in that house, never more than a good wash and sprint to get into bed or get clothes on so that you didn’t get a film of ice on your extremities. (I just laughed out loud thinking about icicles on your ‘you know what’.)  The kitchen was pretty bad as well.  I can remember boiling a kettle to make tea or coffee and holding my hand above the steam, not too close of course, to try and steal some of the heat to carry the cups back into the living room.

My mum had an accident due to the cold one day though when she was cooking something in the oven.  She had taken the grilling pan out of the hot oven and put it on the worktop.  She didn’t realise she had touched it with her skin until she tried to pull away and found she had slightly stuck to it and burnt herself.  It was that cold there was literally no sensation in her hands.  Thankfully there was no permanent damage, but it just goes to show just how bad that house really was!  Thankfully I wasn’t there for too much longer but I can honestly say that I don’t think I have ever been as cold as that any other time in my life.

When in your life have you been the coldest?  Was it a certain situation or a certain place that you can remember?  I would love to hear yours so drop me a message and let me know or write a post on it and I will stick a link up to it here.

Until next time folks,

Stay Safe and Keep Smiling (Keep Warm as well).

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Does Video blogging work for you?

Does Video Blogging work for you?

Always the one to try something new I have decided to take the plunge and let you hear my (not so) dulcet tones and see my (not so) lovely features in an attempt to see if some Video Blogging may be an option for this personal blog over here.  I would obviously tackle different subjects if you folks did like them (and could understand me) and possibly even look at doing some funny bits and pieces for a bit of a laugh every now and then as well.  So without further ado, I introduce you to the ‘real’ me :

So what did you think? Do I need to put some translations up there or could you understand me?  Is my ugly mug too offensive to ever be seen near a screen ever again?  Did I frighten your pets or children? 

Let me know whether you think I should do more video blogging or whether I should banish the webcam to the depths of a drawer bottom for the rest of eternity.

Until next time folks, Stay Safe and Keep Smiling

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Life changes, are they important?

Are life changes important?

Life changes turned out to be very important to me even though I had never thought about making them before but the revelation came for me towards the end of last year, when,  I have to say I was thoroughly miserable.  I was heading down the slippery slope towards depression medication once again, my old demons with my binge eating disorder were resurfacing, I had high blood pressure and my blood sugars were too high.  I was stressed all of the time, I was losing my temper very quickly and I really was not happy with where my life was going.  A couple of weeks before the new year I decided I had to make some life changes if I was going to save my health, my sanity and my relationships with my wife and daughters.

The first thing that I needed to address was my weight.  I was constantly unhappy about the way I looked and after a visit to the GP and the Diabetes nurse I was told that unless I lost the weight I was likely to have a heart attack or a stroke within the next couple of years.  I have to admit that this frightened the life out of me and the thought of having Zanna and the kids go through all of that was something I didn’t even want to consider.  So I decided that I would go and join a local slimming group and make the commitment to go every week.  Zanna said that she would come along too and support me and hopefully she would lose a little bit of weight as well.  It was extremely nerve racking to go into the group but it gave us the chance to have a social outlet that we were sorely lacking and also gave us an hour and a half on our own as a couple.

The next life change was to do with my Open University course.  I was studying for a degree in Psychology and I was enjoying the course materials but I was also really struggling with the workload due to the different pain medications I was taking.  I found it very difficult to concentrate for longer than 10 minutes and my memory was getting increasingly worse.  This was making me frustrated, stressed and angry and it often spilled over into me shouting at the kids for stupid little things.  I was a nightmare to live with.  Those life changes were now more needed now than they had ever been needed before.

Fast forward to today………

I woke up this morning after having a decent night’s sleep for once.  My insomnia decided it was time to take a break and allowed me to sleep almost the full night (a pity Pretzel didn’t see it that way as she was up at 4am) leaving me brimming with energy.  I got up out of bed and decided to do something I haven’t done in a long while…….I tried some of my old clothes on.  I had saved some of my clothes that were too small for me as I hadn’t had much chance to wear them before my weight shot up.   I was surprised to find THEY FIT!  I was genuinely shocked and stunned that I had ‘new’ clothes to wear and they actually had colours in them.  I had been wearing black, white and grey for so long that I had forgotten just how nice it is to have a bit of colour in what I am wearing.  When I looked at the tag I was even more amazed to see I had dropped 10 inches from waist (5 sizes) in my trousers, I have gone from needing a XXXXL to an XL in t-shirts and I have lost 3 inches from my collar size.  In total I have lost 3 and a half stones (49 lbs) since January and I am starting to find that people are seeing a difference and commenting on how I look good for a change.  It is nice to be getting the support but in addition to that I also combined my weight loss with raising money for charity and I am doing quite well.  Zanna is doing amazingly well and she has lost 2 stones (28 lbs) as well so we are now a slimmer, more energetic couple than we were 7 months ago.  The first life change was a running success and it spurs me on to keep going.

Unfortunately, after discussing my medications and situation with my GP I decided to discontinue my studies with the Open University for the moment.  The next few modules I would have been taking were double the workload and there was also the addition of an exam at the end of each one.  I knew I wouldn’t be able to complete those modules and gain the results that I needed and wanted so the best option was to stop.  I do feel relieved as it took a lot of pressure away from me and allowed me to concentrate on getting my own health and personal life sorted out.  This is a life change that I didn’t want to make but, after having made it, it has improved my health and improved my relationships an awful lot.

Not studying started to drive me a little crazy at first but to keep myself occupied I looked towards doing a little bit of charity work with the local short break care unit that my daughter attends to give us a little break every month.  The Carers Association there is a charity that has been set up to help disabled children experience outings to different places around the local area and also to take part in things that other children do but they would struggle to do such as a Trick or Treat Halloween Party, a Christmas party where they get to meet Santa Claus and also to go and see a pantomime.  Both Zanna and I help out raising funds for the group, the administration and also taking part in the various events to recruit more volunteers to help out as well.  It is great for us to make this life change as it allows us to meet other parents of disabled children in the local area but it also helps us feel like we are contributing to the community that has helped us so much over the years.

 Life changes made today a good day!

My life changes have made such a difference in the past 7 months that it is like a dream to me in all honesty. My weight loss has improved my life so much already and, although I still have a way to go yet, it has had a dramatic affect on so many different things I never even considered before.  Now I am able to go out and be a bit more confident in myself and I don’t worry half as much about what people might be saying about my weight and how I look which was always such a big issue.  I am volunteering for a charity which is something I have always wanted to do and especially if it was giving something back into the community.  I have discovered a love for writing which came about from this blog and I posted my first attempt at a short story just a few days ago (this is the first written work I have put out into the public).  The responses that I have received so far have been really good and a few people have asked me to carry on the story which was not what I had planned but I am now considering building a storyline around it.  My personal relationships with Zanna and the kids has become a lot closer because my mood has changed and I am learning to vocalise my feelings instead of bottling them up like I used to.

It is amazing what  a few life changes can do in such a small amount of time and the things I have achieved in the past 7 months have given me the drive and the determination to carry on with the way I am going and also to make some more life changes to improve other things that I am not satisfied with.  I am finished part of my journey towards my final goal and I can’t wait to reflect back when I finally reach the end of my journey to see just how far I have managed to come.

 

Life is pretty sweet for me right now and I like it!

I think life changes are very important on the road to happiness and contentment but what are your thoughts on taking a step back and looking at your life and where it is heading?  Is it time for you to make some life changes?

Until next time Stay safe and keep smiling!

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Land of Confusion, can you help?

Hi once again folks, this is post 18 of the Ultimate Blog Challenge!

I am in a bit of a confused state with this blog and where it is going to head in future and I am hoping you lovely folks will be able to rescue me with some rational thinking.

When I started this blog it was to start talking about how I was feeling as a father, about my feelings to with my own disability and to share the experiences and stories of caring for my daughter.  Since that time I have managed to get so much support from the people who read this blog and the comments I have had have been so supportive.  There is also the fact that I have found it to be so very therapeutic for myself to be able to clear my head of my worries, concerns and any negative thoughts I may have normally held on to.  I have read so many excellent blogs, spoken to so many awesome people and had so many new ideas about how I want to carry on writing and posting.  That has given me a little problem though that I seem to struggle with each time I come to writing a post.  I am having a running battle with myself as to what ‘fits’ with this blog.  For example I have written a list of different topics that I would love to talk about or post photographs about but they don’t seem to ‘fit’ with the subjects that I have discussed previously about my family or disabilities.  So do I include these in my posts on this blog or should I try to refine what topics I do discuss to make them fit my previous discussions?

My dilemma!

For example I would love to try my hand at writing some fiction, poetry, or short stories. I also thought about possibly doing some reviews of products relating to various disabilities or even maybe talking about the work that I do for charity.  All of these are things that would be totally new to me but offer the chance to expand on how I write and hopefully to improve how well I put myself across to the world.  Having said that, I would never want to alienate the people who read my blogs as you have all made so much of a difference to me that I would like to keep you as part of the blogging experience.

Can you pick out the puzzle pieces to help answer my questions?

So I am left thinking about what to do, should I start up some separate blogs to try out these different subjects or should I create some separate pages on my blog that contain some of these different things or should I abandon these ideas altogether and stick to what I have been writing in the blog up to now?  Don’t get me wrong I won’t be abandoning the subject of the blog as it is now I would just vary the different types of things that I do blog about in future.  I figure the best way for me to do it is to let you folks, the readers of my blog decide what you would like to read about from the mind of little old me.

Should I stick with what I am doing or would you like to see me blog about different subjects along with the ones I cover at the moment?

I really do appreciate all of your support so I would appreciate it if you could let me know what your opinion is.  Leave a comment and tell me if there is a subject you think I would be good at talking about or if the suggestions I have given would be an option.

Thanks again folks and until next time, Stay safe and keep smiling!

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!

How do you get back to yourself?

Hello once again folks, Day 14 of the Ultimate Blog Challenge.

Wow 2 weeks in and I have managed to find some fantastic people on this world wide web, post every single day to my blog, buy a website domain/hosting, learn more about WordPress plugins and stay sane through all of it!

I found myself talking to some wonderful people over at the Bloggers Unite tribe I am a member of on WANATribe about starting to write some other material that is not necessarily about special need parenting and subjects similar to that like I do with this blog.  Don’t get me wrong I LOVE this blog and all of the readers that I have and it has helped me grow so much in the past month or so that I have been writing it.  I just feel that as I am enjoying writing so much that I should branch out into some other things that I am really passionate about as well.   But then I realised……..what am I actually passionate about any more? I know that sounds a little strange but because every day is so tied up in managing my own pain and caring for my disabled daughter that I have forgotten what makes me…..well…..ME.  I used to have so many things I was passionate about and I used to be involved in so many things in so many different areas but it all stopped either when my daughter was born or I got really bad with the pain.
I guess this is part of the journey I am on and part of the reason this blog has been helping me.  I am slowly but surely realising my own worth as a human being and an individual.  After suffering so much abuse and self-hating about my weight, depression and coping with the binge eating I have piece by piece lost the parts of myself that made me have an identity and feel I had something to give to the world around me.

There are a few things and people who have slowly helped me start to realise this and it is because of them that I feel I need to take a big leap back into my own identity and start being a little selfish and start doing things for me and the man I want to be (there will be a big shout out at the end of this post I warn you).  I don’t want to get up in the morning any more and look in the mirror at this stranger’s face that looks like me but isn’t a true representation of the real me.  I don’t know if this is just something that has happened to me alone or not but I can’t help but think that there are some other people out there who must look in the mirror and see somebody different staring back.

Where did my dreams and aspirations go?  Where did my motivation go? Where did my passion for life go?  Why have I been so content to let life pass me by instead of jumping in and experiencing life? Why have I passed up on opportunities because I didn’t have the confidence to step up to the plate and realise my worth, opinion and experiences are valuable? 

These are all questions I am now asking myself because I don’t want my life to reach it’s later stages and be full of regrets, wishes unfulfilled and feeling like I hadn’t participated in life in general after all it isn’t a dress rehearsal!  I am going to make a change in my life from today, this is it:

I promise to be myself, I promise to start recognising my self-worth, I promise to reignite my passion, I promise to start living life instead of letting it pass me by and I promise to be a happier, confident, meaningful part of the world around me and give back to those who need it.  I promise this in front of all of you people who are reading this and those of you who think about me even for a flashing moment during your day.

I used to be so involved in amateur dramatics, I used to play in a band, I used to sing ALL of the time, I used to listen to music ALL day,  I used to wood carve a lot, I love watching movies, I love poetry and reading, I loved playing computer games, I loved watching NFL and Rugby,  I loved talking to people and sharing stories/jokes and I used to love cooking A LOT (more than I did eating it!).
All of these things I used to love doing but I have also found out a few things that I have started doing that I really enjoy doing now such as fundraising for charity, writing my blog/stories/poetry (anything really!)  and learning about all sorts of things (I seem to like to learn about virtually anything as well).
Then there are a few things I would love to do but have never had the confidence, or I have lost the confidence, to do such as learning to dance, putting my singing out into the world for people to hear, writing things to put out into the world for people to read
building my own reviewing website/blog to give honest reviews on different products and cooking a meal for people again.

Looking at these things there are lots of ways for me to start looking at finding myself again but I would love to have as many of those who have helped me along the way on board with my journey so I plan to write about them as I go.  Is this something you folks would be interested in reading as well or is it something I should write about in a different place?  How would you go about finding yourself again?  Do you think you would approach it in the same way as I plan to do?

And finally to the shout out part (I don’t mind if you skip this) as I really would like to thank:

My wife, daughters and family for being there when I really needed their strength and support;
All of the folks at SWAN UK who make the journey with a daughter who has an undiagnosed genetic condition so much easier to bear;
Karen, Dan, Andrew, Tina, Faith, and Duane for being excellent friends and listening to the gripes and groans and generally being awesome mates through the bad times and the good;
@Sarahmckenzie80 for making me laugh so many morning on Twitter when I have felt like I have been hit with a steamroller,
@HumanInRecovery and @Athenabrady for your kind thoughts, support and general sweet natures that have helped build me up;
All of the folks at WANATribe who have supported me and offered me help in building my confidence as a writer and blogger;
All of the folks participating in the Ultimate Blog Challenge who have helped my readers grow and offered such insightful blogs to read;
To anyone else I forgotten to mention, if you think you should have been on this list you are probably right and every little thing you have done contributes in some way to my life and for that I am truly thankful;
Finally A BIG HUGE THANK YOU to all of you readers who have contributed to my first steps to becoming my own person again, you will never know how much the comments, support and thoughts have helped me realise I need to begin a new journey and I hope you will continue to support me along the way.

Until my next post stay safe and keep smiling!


Decisions, Decisions, Decisions. How do you choose?

Hi again folks, This is Day 9 of the Ultimate Blog Challenge.

This week has been a really tough one for me as I have had to make some serious decisions about my life and the direction in which it is going.  Everything from my health, my blogging, my studies with the Open University and even what I do in my leisure time with my family has been on my mind in this past week. So if you folks don’t mind I would like to ask you all for your opinions and advice.

Sesame magazine

Sesame magazine (Photo credit: Wikipedia)

The first thing I have had to address is my studies with the Open University.  i was studying for a degree qualification in Psychology and over the past year I have juggled my health, caring for my daughter and my studies to try and get my assignments in on time.  I have just about managed it but with a considerable amount of stress which grew with each assignment that was due.  it got so bad that I almost had a meltdown with the last one causing me to suffer terrible insomnia for about 4 days where I didn’t get any sleep whatsoever.  This affected my health really badly both mentally and physically and my poor wife and kids took the brunt of my bad moods I am ashamed to say.  On top of all that my medications keep changing to get stronger and stronger each time which often means I have extreme difficulties in concentration, my memory is terrible and a very strange phenomenon of being unable to read and understand things.  Add on top of this the effects of constant pain being a distraction and you start to see why I was struggling so much with handing in my assignments.  I decided that I should speak to my GP about all of this and make my decision as to whether I could continue working towards my degree.  The result was my GP said that she didn’t know how I wasn’t comatose during the day with the amount of medication I am on and that it probably wasn’t going to improve for the foreseeable future.  This means I had no choice but to withdraw from my studies.  I am really gutted about it but I have to admit I do feel a little relieved that I won’t have the added pressure on me when things start up again in September.  I do have the option of looking at some counselling courses in the future which I would consider in place of the Psychology qualification as it is a lot more ‘hands on’ and is something I think I would be quite good at doing.

kosmic blogging in samsara

(Photo credit: ~C4Chaos)

Then I started to think about my blogging and writing.  I have been having an absolute blast writing this blog up to now and it has been therapeutic, opened up my world to supportive and caring people and caused me to take a look at what I want from life and where I am heading.  The support I have had from your comments and the support I have been shown through Facebook and Twitter has been astounding.  I have had so many nice comments, spoken to so many nice people and had so many different thoughts and ideas on what I would like to do next.  I have decided that I am going to self-host my blog so it will be changing web address in the very near future.  This will allow me more control over what can be done on the blog and hopefully will give me a bit more freedom to change the design and feel of the blog to fit what I want it to become.  I have also considered writing some other things such as some poetry, short stories or maybe even a weekly story in episodes for a different blog.  Are there any things you would like to see me write about either in this blog or for another blog on a different subject maybe?   I will consider any suggestion as I have not got any ideas for certain about what the next project will be.

Example of different morphine tablets

(Photo credit: Wikipedia)

My health has took a bit of a battering over the past couple of months with my insomnia becoming increasingly worse, my pain getting steadily worse and my ability to move around being severely compromised.  I spoke to my GP about my insomnia and she is stumped about what to do about it as I already take combinations of Morphine Sulphate, Oramorph, Gabapentin, Diazepam, Paracetamol, Acupan and Feldene Gel for my pain and swelling.  I am currently taking the maximum dosage she can give me and she said it should technically have me knocked out during the day but I find I can’t sleep no matter what I try.  As the insomnia gets worse the physical symptoms associated with it (ulcers in the mouth, stomach cramps, headaches and fatigue) also worsen causing me to withdraw to my bed on some days with an inability to move from it.  This has taken its toll on me mentally as well as it can cause me to feel depressed, tired and that I am fighting an uphill battle in trying to deal with my pain and it’s control.

I also wanted to start trying to do some exercise in the form of swimming but with the constant tiredness and stomach pains it can make it difficult to commit to going regularly to swimming sessions at our local pool.  I did manage to find out that our local council is planning on disabled only swimming sessions which will hopefully mean that we can go as a family to enjoy some leisure time together as well.  I just hope that I can manage to get the pain under control enough to be able to go to some of these sessions as I think my weight loss would benefit from doing some regular exercise and I also don’t want to end up with too much muscle wastage due to inactivity.  Which actually brings me on to my next couple of points.

A person in a wheelchair icon

A person in a wheelchair icon (Photo credit: Wikipedia)

I have recently put in my renewal forms for my disability benefits and they have finally awarded me the care component as I need a lot of help from my wife with everyday tasks.  I have been trying to get them to change this for about 8 months now but they seemed unwilling to budge, but, as of October, they have awarded me the new rate.  This has been a good thing and a bad thing for me in a way.  In one respect I feel validated because there has finally been recognition of how much I actually suffer each day and that is a good thing but on the other hand it has also opened my eyes and made me realise that I am actually disabled.  Don’t get me wrong, I knew that I was having these difficulties but I guess in my own mind I tried to rationalise it as ‘something I just get on with’ without analysing it too much.  This change has made me re-evaluate things and realise that maybe I need a little more help than I have been comfortable asking for in the past and that is something it is going to take me a little while to come to terms with I think.  This also ties in with my next, and biggest, question that I would like some opinions on. On Sunday gone I participated in a sponsored walk to raise funds for the respite care unit that my daughter attends.  I say I participated, my wife and one of the ladies from the unit took turns in pushing me in my wheelchair while my daughter pushed her sister in her wheelchair.  It was really nice to get out as a family but it did highlight a few problems that have made me weigh up some options.  My daughter found it quite difficult after a while to push her sister because it caused her to get sore hands and shoulders while my weight and my wheelchair caused my wife to get tired quickly pushing me.  It was only then that I realised that this was one of the reasons why we don’t go out as a family very often as it is so difficult for us to organise places to go with two wheelchairs.  I can’t physically propel myself along in my wheelchair because the position I need to be in means it causes my back muscles to spasm and worsens the pain.  That is what made me consider getting a powered wheelchair scooter.  I have the option as I get a mobility allowance on my disability benefit which would pay for me to have the powered wheelchair but I do have some reservations about getting one.  The advantages would be that my family would get more time out together as my wife would be able to push my daughter in her wheelchair while I would be fine getting myself around.  It would also mean for short trips to the GP and the local shops would be made easier meaning I wouldn’t have to be taken in the car, saving on petrol and running costs.  We already have a wheelchair adapted vehicle so transporting a motorised wheelchair wouldn’t be a problem but I do have some reservations.  I have a thought in my head that I would just be seen as an overweight guy ‘too lazy’ to walk if I was to use a scooter type wheelchair and I would feel a bit self-conscious because of it.  I also would be scared that using a scooter would make me become too reliant on using it.  A phrase that sticks with me is one that my pain management clinician said is “Most of the time people who go into a wheelchair because of a back problem don’t come out of it”.  This had me thinking and I don’t know whether it is something I should accept is going to happen to me or if I will actually get better.  I have suffered now for a number of years with the pain and things have become progressively worse during that time, so do I accept that I am going to need to be in a wheelchair for the forseeable future and adapt to that as best as possible or do I resist and struggle on as I have been doing?

Question mark in Esbjerg

So these are the questions that I am faced with.  What subjects would you like to see me talk about in my blog?  Are there any other types of writing you think I should try out?  Should I get a motorised wheelchair to improve my family’s social life and ease the burden on my wife and daughter? Am I worrying too much about what other people will say about me if I do get the wheelchair? I am at a total loss as to what I should do so I am throwing it open to you, my new found friends of the world wide web……What would you do?

I thank you again everyone for the support you have shown me so far and I truly value each and every opinion that is offered to me,

So until next time, Stay safe folks!

Is education vital for key disability issues?

Hi again folks, this is day 8 of the Ultimate Blog Challenge

I thought about writing this post as a sort of follow up to the post I did earlier called Do you ever feel tired, I mean really tired?

A lot of the responses that I got were similar from most of the people in saying that they had suffered discrimination or abuse because of the fact that they had a disability.  It seems as if ‘hidden’ disabilities are the most difficult as people look at the sufferer and think they are ‘normal’ and shouldn’t have any preferential treatment.  This was confirmed to me earlier this week when a friend was telling me that they had suffered a stream of abuse from one woman because she had her daughter in a pushchair in a disabled spot on a bus and the bus driver had to refuse another wheelchair user from boarding the bus because there was no space.  The woman came up and challenged her and she explained that her daughter was disabled and she was then accused of lying.

This is the internationally recognized symbol ...

The international symbol for accessibility (Photo credit: Wikipedia)

This shocked me and made me think about a similar situation we had encountered with my daughter when visiting Universal Studios in Florida a few years ago.  We had gone to see one of the side shows (something like Indiana Jones etc.) and my wife and daughters went down to the front seating while I agreed to sit at the top in a disabled space with my daughter in her specialist pushchair while she slept.  A member of the staff then came over to me, shoved his head under the sun shade cover on my daughter’s pushchair and proceeded to ask me ‘Is she sufficiently retarded enough to warrant you sitting in this space?’  I saw red, showed him our pass from guest services and explained that if he didn’t remove himself from my line of sight immediately he would be removing a shoe from his hindquarters.  I was infuriated and we made a complaint about him to the park managers but again it highlights a problem that seems to be worldwide.  We continued having this problem all over the place including when we parked in disabled bays, used public transport or tried to use disabled access entrances.  I feel guilty to say but I actually felt happy the day that she got her first wheelchair because as soon as she got it all of those comments practically stopped.  It is amazing that a wheelchair has such significance that people assume anyone in it is automatically ‘disabled’.  My wife could go out and buy a wheelchair tomorrow and wheel herself around in it but she wouldn’t be disabled so it isn’t really an accurate marker is it?

I know as a parent I don’t want to plaster a big sticker on my daughter that says she is disabled.  In fact she is quite ‘able’ to do a lot of things but it still doesn’t alter the fact that her developmental age is 2 years old while she is in the body of a 9 year old.  However, to a certain extent there is a need to identify that she needs more help than that of the average child of her age.  That still wouldn’t stop all of the comments from being made though and it is a sad indication of the way our society is progressing at the present moment in time.

Two versions of the same message come to mind and they are:

“A nation’s greatness is measured by how it treats its weakest members.” ~ Mahatma Ghandi

and one that our current government in the UK could do with listening to:

“…the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. ” ~ Last Speech of Hubert H. Humphrey

In this country recently there has been a number of newspapers and a number of politicians who have used dubious language or have outright attacked disabled people when talking about the changes they are proposing with regards to benefits.  Some of the comments that have been published have caused outrage and rightly so, things like :

“My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.” ~ Rod Little in the Sunday Sun newspaper (full article is here)

and also this newspaper story shows the effect it is having:

Benefit cuts are fuelling abuse of disabled people, say charities ~Peter Walker in the Guardian newspaper (full article is here)

 So in this present climate in the UK it has been shown that through the use of dubious language or labelling disabled people as ‘scroungers’ who are scamming the benefit system, the people responsible are actually making life so much more difficult for those with a disability, never mind those of us with ‘hidden’ disabilities.  I personally would give every single penny I had claimed if they could take away the years of suffering I have had so far or I am likely to have in the future.  I ask you to bear in mind that these comments are being made by people who are now being found to ‘dodge’  paying tax into the system that provides for these people and also these cuts and decisions are being made by a government that wasn’t even elected by the people.    I also ask you to bear this in mind, this is the year when all of the world has it’s focus on the UK as the Olympics and the Paralympics are held in London.

So with that in mind, the Olympic Games and the Paralympics are being held in our country.  A great honour and surely a showcase to the world at how good we are and how well we integrate disabilities into our society.  Well you would think so but when I was reading a blog from Fran Williamson, one of our great paralympic swimmers, and she mentioned that:

“Official documentation of the London 2012 Games Makers mission has categorised Cerebral Palsy as a learning disability.  Whilst it is true that, depending on the areas affected by brain damage, some people with CP do have learning impairments, it is not an major affect of CP for all who have it.”  – (you can read the blog post here) 

Now if the Games Makers Commission is not correctly informed when talking about disability and they are organising a Worldwide, World-famous competition for people with disabilities then what chance do any of us stand?  Well as I have said before I truly believe the answer lies in education.  If people are educated about different types of disability they might be better informed and feel less need to abuse something they simply don’t understand.  And that is why I decided to join a group that has been formed on Facebook who are looking to send a petition in to the UK government to include some form of teaching in the curriculum about disabilities and the effects of them on daily life.

The group called Campaign for disability awareness lessons has been set up because of the various levels of abuse that parents or children have suffered because of disability.  The group states:

 “It is vital to this campaign that parents family and friends of children with disabilities can stand together and work toward making a safer future for our most vulnerable. A future where they won’t be judged for their quirky movements and obsessive nature, people need to be educated to understand there is so much more to these children than what they see on the outside”

The group has been spread by word of mouth and within the first few days of being open is already at around 240 members and it is still growing.  It is something I strongly feel needs to be addressed as both myself,my wife,  my daughter and her older siblings have all been subjected to some kind of abuse about my daughter’s or my conditions.  It is the hope that with a little understanding about what can and can’t be done that things may just be able to change and everybody can be given the respect that they are due.

Thanks for listening folks, until next time, Stay Safe!

 

Step through the portal into the mind of an insomniac!

WELL HELLO THERE

I have decided that I have way too much time on my hands when I am awake at stupid o clock in the morning, whether it is through pain or for some other reason so I thought why not let others into my little world by writing a blog about it.

I want this blog to be a sort of diary or journal or log or whatever you want to call it, documenting my daily life with my family (including the fights, laughs, ups and downs etc.), my struggles with insomnia and also chronic back pain.  I know this sounds really dull and dreary but hey I want somewhere to sound off, witter on and generally write my random craziness so if you are reading this then I guess you have just become my listening post 🙂

SO A BIG WELCOME TO MY JOURNEY THROUGH LIFE AND I HOPE YOU ENJOY SHARING THE EXPERIENCE!