Life goes on

Asking the questions that need to be asked;

If you are born with a disability do you lose as much as someone who becomes disabled?


I was not born with a disability, mine kind of quietly crept up on me and then took hold with a cruel vengeance. Sadly my disease is not exotic, or unheard of, no mine is so boring people treat it with contempt and ignore it. You’ll ignore it at your peril though.

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I was diagnosed with type 2 diabetes in August 2011,  a day I will never forget, the day I was diagnosed came as a huge shock. Why? Because I ate a fairly good balanced diet, didn’t drink very much alcohol at all, and I cycled in to work most days (unless it rained hard, then I drove), but even so I joined a local gym that very evening straight after work. I was determined to defeat this disease on my own terms. It would not get the better of me. The MD of the company I worked for initially made the right noises about supporting me. I had a career as a sales manager in the oil industry. I was earning a good wage. My family (I am married and I have five children) and I were comfortable, my kiddies weren’t spoilt but wanted for nothing, and family life was good. I worked for a little company in Poole with less than 10 employees.


roundabout

I went back to my doctor around November 2011 as I was struggling with pains in my legs and feet and kept getting stupidly hot and sweaty up top, while never being able to keep my legs warm. Tests followed and my doctor advised me that I had diabetic neuropathy, and that it was so advanced and the damage so extensive that I had more than likely had diabetes for 10-12 years prior to my diagnoses! I began a course of pain killers and saw specialists. Nothing really seemed to ease the pain, in fact it began increasing, so much so I just couldn’t cope. I had a nervous breakdown after seeing the doctor and went to our local Sainsbury for a coffee. My Wife contacted my employer and explained as best she could. I was signed off for two weeks. I won’t bore you with the details, but sadly as things progressed I never returned and was eventually relieved of my responsibilities and lost my job. I never had a visit or even a card from my staff or fellow colleagues. Not even the MD bothered. Sad really as I single-handedly turned their fortunes around. I kept returning to my GP seeking help and answers. My ability to walk was diminishing by the day, pain in my legs was keeping me awake at night so my body clock was completely screwed up. Then there was the fatigue, I couldn’t seem to do anything without it knocking me for six. If I washed the car for example it would take me about 30 minutes, but I’d be out of action for 3 hours, then it would be a day, then two days. So I stopped doing anything.


help 1 I haven’t yet found a cure for the freezing legs/sweaty up top combination, and I still suffer with keeping weird hours and having no energy. I take a maximum dose of dihydrocodeine and others for the pain in my legs, but it doesn’t really touch it. This means I cannot walk any more than 100 yards and only with crutches. Everywhere else my wife pushes me in an NHS style wheelchair. I haven’t left my house independently for at least 18 months. My wife is my unpaid carer. I miss the challenges work gave me, the buzz of the team hitting targets, the banter with the lads and the interaction with everyone (even the few who were constantly moody). I miss going to the gym, I miss cycling to work. I detest that I can no longer be a proper Dad to my children, taking them to the local park, or out for a drive. I am imprisoned in my house; I spend most days sat up in my bed or if it is a really good day, I shuffle downstairs with my Wife’s assistance for a few hours. I have recently started a ‘gofundme’ campaign in order to try to raise funds for a super lightweight wheelchair so that I can at least get out on my own safely. My own view is this; when you’ve had a life an lose it through an accident or illness you lose more than someone who never had it. It doesn’t mean that you’re any worse off than any other disabled person, it means you have a bigger challenge adapting. Have you had a similar experience? Please share your thoughts in the comments below, I find sharing experiences encouraging and if you have tips on how you cope it could help me, and any other readers. There are good things that have come from this; I have been able to see both my youngest grow up and start school. I started a campaign that many other disabled drivers can relate to and have an online petition gathering signatures to challenge government to stop the abuse of disabled parking bays. I have made friends through this process and it has helped me a lot with the low mood that typically affects those who have poor mobility. I have also grown closer to my Wife because of this, though I regret being so reliant upon her and therefore taking so many opportunities away from her.

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4 thoughts on “Life goes on

  1. Good to read your story Chris, I can identify with the ‘became disabled’ badge! I have worked 40 years of my life, 25 in Child Protection services. I had my children young and was an active person, took children on outdoor pursuits, swimming, cycling, climbing/trekking. In 2001 I was happily working when a young girl launched herself and a boy off a 15ft staircase and landed kung foo style into my leg!
    The injury resulted in 6 operations, one of which was an osteotomy where my femur was sawn in half and a pin inserted from hip to knee (twice!) I have had an unrepaired femur for 14 years now. I’ve had 13 Deep Vein Thromboses’ (clots) and am now a lifetime Warfarin user, my lower leg veins are damaged due to the clotting and circulation issues. My knee is desperately in need of replacement, with no cartilage and always stiff and swollen, but while the femur remains an issue this is not possible. My hip is also painfully riddled with Osteoarthritis, the ‘good’ knee and hip and wrist, shoulder, elbow are also worn after 14 years of using a crutch as is my ‘good’ leg with having taken all the strain.
    Until 16 months ago when I took voluntary early retirement from my job, I have worked throughout, losing money when I had operations due to time off sick. The girl who caused this chain of events has never been made to feel responsible and has no idea of what I’ve endured, she was a child in care and not charged etc. My employers have no idea of the difficulties I’ve faced although I have had fantastic colleagues and good managers to support me. To ‘deal’ with my anger/frustration I also trained to be a Counsellor and Hypnotherapist, this made me self search and become more aware and empathic. I will return to this role shortly on a part time basis.
    Because I had the foresight to pay into a pension, I’m 58 and have a ‘lump sum’ to help me live (until I get my state pension) I cannot claim ESA/JSA and live on a civil servant ‘Gold Plated’ pension of £730 monthly.
    I have 2 amazing grown up children who have also found difficulty in accepting what happened to take their lively active mum away…My partner of 18 years is my rock, he was my toyboy (11 yrs younger) and we cycled/trekked everywhere, he’s stuck with me through all the sickness/moans/difficulties etc! We still camp in a tent on the North West coast of Scotland, I walk into the sea on crutches (with help) and swim…I try very hard to remain fit although weight has crept up! I know that I will never run on the beach (or anywhere!) with my grandson, I can’t stand/walk far, cycle, can’t bend my knee, suffer sleep disturbance, get in/out of a bath, walk unaided etc etc. I survive on a diet of 19 tablets daily, which make me sleepy, dizzy, headachy, fuzzy brained and causes hair loss and generally messes up my bodily functions…
    So all in all I now live a happy (albeit restricted and pained) life, we recently moved house and I have more room to fill with books, crafts etc, I remain as positive as possible and help others to cope with their lives. I used to believe that old adage; ‘Everything happens for a reason!’ I now take each day at a time, I love my family/friends, they love me, I don’t like rules and routine and I still challenge much about life…I’m a patient and positive person and I attempt to find good in the people I encounter.
    Am I a ‘better person’ who knows…but I’m generally content and happy and hope to remain so…

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    1. “I survive on a diet of 19 tablets daily, which make me sleepy, dizzy, headachy, fuzzy brained and causes hair loss and generally messes up my bodily functions”

      I can relate to that! Thank you for sharing your experience too Pam, our Facebook Group is a nice place to find support and advice from others in our situation too.

      It’s open to anyone, so for you or anyone else reading that may not have joined, click here to find it.

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    1. Hello Elaine! Yes we’re doing everything possible to get help from the state, charities, local companies and so on. Sadly the process is painful and drawn out. We started the gofundme simply as a way to get the ball rolling. I am going stir crazy after so long trapped at home and just want to be a proper Daddy again.

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