An Open Forum for Disibility and Invisibe Illness Awareness

My Son and I….

I am Chaosgerbil on Twitter, here are the pieces about myself and my son and how we all cope with our disabilities.

Myself :-

In the past I have worked in retail, manual labour on the railways replacing track etc, done a job where I was driving up to a thousand miles a week to get to various sites and taught karate.

All of those things are definitely in the past now as I find it increasingly difficult to even leave the house. My problems started when I was 18 and dislocated my knee, the surgeon explained that my kneecaps sit too high in their joints and are very loose. Over the years I have had multiple full dislocations of both knees
and partial ‘slips’. This has led to at present 5 operations, 2 on the left knee and 3 on the right. My last operation was supposed to be for a partial knee replacement but my surgeon decided on opening me up that he could clean the areas sufficiently and put off the replacements I will eventually need a little longer. If this operation is successful then I will need the same or a replacement doing on my left knee as they are both in a similar condition.

I have osteo-arthritis in each knee which has been confirmed to be spreading to other joints in my body, no cartilage in my knees from years of wear and tear, diabetes, depression (which I had before my knees got really bad but has steadily got worse) and just over three years ago was diagnosed with a condition called Neuropathic pain in my right shoulder, this condition is caused by a nerve going into fault and constantly sending pain signals of various types down my arm and up into my neck and head.

Besides the knee operations pain management is the only treatment for the arthritis and neuropathic pain. I have regular supra-scapula nerve blocker injections and am on three different painkillers plus an antidepressant that has nerve block qualities and liquid morphine for the really bad days.

As the pain and mobility levels have got steadily worse my ability to walk, do household chores and even play with my son have steadily decreased. I feel like a prisoner in my own house and body some days. This also means that steadily my wife is forced to do more and more on top of a part-time job, even having to change her hours at work as I am unable to walk to the end of the street to collect our son from school.

I have recently been awarded Disability Living Allowance, higher rate mobility and low rate care allowance. We have opted to use the mobility component to get a car as we currently have to rely on public transport and taxis which limits my ability to get out greatly. Hopefully this will help to give the whole family the chance to get out and enjoy life a little more, even if it is only trips to the shops or our local ice hockey team.

Having read Nadine Dorries comments about disabled people on Twitter I would like her to spend a day in my position or that of other friends on Twitter who are of sound mind but for various reasons considered disabled or house-bound.

Our son :-

Ben was born with a rare genetic condition called Phenylketonuria, his condition was diagnosed via the heel prick test that all babies in the UK undergo. At 10 days old we were told by the midwife to contact Pendlebury hospital as a matter of urgency.

When you have a new-born baby and a department you have never heard of asks if you can get down to see them the same day some degree of panic enters your heart. The panic was nothing compared to the reality of being told that your child has a condition that if not treated carefully with measured quantities of special formula and later a very strict diet then they will be brain-damaged is nothing short of the world falling apart.
PKU (phenylketonuria) is a condition where the body does not break down one of the base proteins found in meat, dairy, nuts and most other foods properly. If untreated the protein builds up and causes the neuro transmitters in the brain to clog, eventually leading to brain damage.

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Ben is a bright, energetic and absolutely normal 9 year old boy. He is no different to any of his class mates at school to look at, but looks can be deceptive. PKU requires a strict diet and foul tasting supplement drinks for life. The amount of supplement is carefully worked out by the dietitians at hospital to match Bens size/weight and food intake. A lot of foods are off the menu completely, no fish, meat, dairy, soya, nuts and anything else considered high protein. No drinks that say ‘contains a source of phenylalanine’. Some other foods can be given as ‘exchanges’ as Ben needs some of the protein to ensure he grows and develops properly, the exchanges have to be in weighed and measured amounts. The amount of exchanges is dictated by regular blood spot tests sent to hospital to check on the amount of phenylalanine in his blood. Fruit, salad and some other foods are considered ‘frees’ and Ben can eat as much of these as he likes.

Special mixes are available on prescription so we can make Ben bread, cakes and other low protein foods to help make his diet more varied. Snack pots, some biscuits etc are also available on prescription but the low protein alternatives are not the most palatable foodstuffs in the world.

We applied for DLA for Ben as his condition requires constant monitoring and he needs cajoling into drinking his supplements all the time, up to an hour a time, 3 times a day at present. We were refused DlA initially and after a failed appeal and finally being successful at tribunal got his award.

DLA is not a financial reward for being ill, it is much-needed help for families such as ourselves to give Ben the best start in life we can. We do not live in the best part of Manchester and our health visitor actually said to us ‘don’t take this the wrong way but I am glad it was your son who has PKU’, this may sound a cruel statement but what she meant was that she knew we would try our hardest to make sure everything was done right for our little boy, unlike some families who would not take the initiative or even try to keep to the diet or use the formulas necessary to ensure their child grew up as normal as possible.

Life isn’t easy for us or for many families with disabled people or relatives. But we are real people, normal people who want to be treated fairly and decently. Please don’t just look at the walking stick, wheelchair or take a step back when strange disorders or mental health issues are mentioned. We have hobbies, interests and most of us a life that is so much more than being ‘disabled’.

As a family we attend our local ice hockey games as often as possible, Ben has the same interests as any other 9 yr old and I enjoy reading, chatting on Twitter and taking and editing photographs. Yes some days our disabilities stop us from doing what we want to and limit us from the things we used to do, but that doesn’t make us any less of a person.

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Comments on: "My Son and I…." (6)

  1. MoGeo Photographic said:

    Pete, that was a very well written and powerful piece, I hope a lot of people who need to see it and take note!

  2. Lorna Byrne said:

    Thanks for sharing a little more about yourself with us. Excellently written. You’ve a lot to cope with as a family but you’ve such a great sense of humour and strong spirit x

  3. Very well said! You describe your situation clearly, without self pity. You & your family are working hard each day, overcoming huge hurdles, to participate meaningfully in life. You are contributing to society & maintaining your dignity. You provide support & inspiration to others as examples of hope & courage. Thank you for speaking for others who are struggling & succeeding each day in similar circumstances. You give a sane response to a cruel statement made by a public official whose ignorance seems to be outstripped only by her arrogance. Your presence on Twitter is a strong influence on my own life as an example of hope & even humour in the face of Life’s injustices.

  4. Thank you all for your kind words.
    The same as many people I am not looking for sympathy or to be a martyr. I simply wanted to explain that disabled people are more than just their ailments. We are all real, normal, feeling people who deserve to be treated exactly the same as anyone else. Don’t pity us or think you shouldn’t disagree or argue with us because we are ‘different’. Challenge our views and opinions as you would with anyone else. Look past the walking stick, oxygen bottle or whatever else it is and laugh at us for the football team we support, the X Factor singer we love or show disgust that we eat marmite.
    We won’t break or drop down in a faint. We will blossom like a flower, share our opinions and maybe even force you to try marmite.

  5. Debi Simpson said:

    Well put Pete. I’m pleased to have met you here on twitter. It is so important to see people for who they are and not *just* their disability. Part of my life story involves the decision to train to be an Occupational Therapist late in life, and the fact that my life got turned upside down when within 2 months of my starting when my lovely dad had a very major stroke. Because of this I could always see the difference between reality and what we were being taught…no ivory tower for me. Watching my dad struggle after his stroke whilst having to examine my personal prejudice’s in regard to many things, including my own preceptions of disability completely changed my reality! And that was without the knowledge that I would soon be riddled with osteoarthritis and requiring orthopedic surgery myself. I believe that it is important to keep reminding folks that things can go wrong but that doesn’t make you less of a person within society.
    KEEP FIGHTING THE FIGHT! xx

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