On becoming disabled

Hi, I’m Jane, spoken with a swagger, because this is how I saw myself until a few months ago.

KILIMANJARO_2

Let me tell you a bit about myself. Most of my life, outside of work, has been about exercise or the great outdoors. A map of my whereabouts would show me walking through the Gambian Jungle, or trekking across the Israeli desert, taking in a quick abseil down a 40-foot fossilised waterfall.

I have reached the summit of Kilimanjaro which is the highest free-standing mountain in the world. Not without nose bleeds and tears, but I got there.

Are you still with me?

The Himalayas were no stranger to me, I love trekking there. Most memorably, I was involved in a trek over Christmas and the New Year when we were at 14,000 feet in Nepal and snowed into our tents for Christmas Day, enjoying the iced cakes cooked for us by Sherpas using two flame gas cookers.

The coast-to-coast walk, from the West to the East Coast of England – almost 200 miles long – enticed me so much that I did it four times, once completely alone.

Can you still feel the swagger?

Nearer to home, my weekends always consisted of hill-walking; Brecon Beacons on a Sunday, Lake District, or Peak District. Every morning I swam 80 lengths (one and a quarter miles) before going to work.

My 50th birthday began with a two-mile swim, followed by an advanced step class, then weight-lifting.

You’re getting tired of my boasting now; I can feel it, but bear with me – there is a point to all of this.

everest-base-camp-trek-map(1)_2In 2005 I trekked to Everest Basecamp, but didn’t quite make the final pull as I developed high-altitude bronchitis and was treated at Pheriche hospital, which at 17.000 feet is the highest hospital in the world. Even in illness I had to go to extremes!

On return from this trek I developed pains in my left knee, which two operations back in England did nothing to relieve. Due to my persistence I eventually saw a consultant who realised that the knee pain was actually referred pain from my hip.

It was recommended that I had a relatively new procedure known as resurfacing, which avoided having a full hip replacement, and I jumped at the chance of regaining my health and returning to hill-walking which I had been unable to do.

The procedure involved having a small metal-on-metal hip resurfacing, from which I was expected to recover in 12 weeks.  I was a senior manager in the NHS, and life was complicated when it was seriously painful to walk across a room and difficult to concentrate in meetings due to the pain.

I was delighted to have found a solution.

The operation went ahead as planned in August 2006, although at my six-week check I expressed concern that I was still in pain, having noticed that the other patients in the waiting room were pain free. I was told that they were probably fitter than me before the operation.

In December that year, I was admitted to a Coronary Care Unit with sustained high pulse rate, which turned out to be a hyperactive thyroid. This can be associated with major surgery, such as hip replacement, but there was no proven link. I felt more ill then than I can ever remember.

In May 2007 it was treated with radioactive iodine, which meant I had to keep away from other people for a couple of weeks, to prevent them being exposed to radiation. Having not been used to being ill, I lost patience with myself, and longed desperately to return to my former life. I had taken a lot of sick leave from work which was very difficult.

But the pain in my hip continued. I was given a steroid injection into my hip early in 2008 with very little effect. Later that year I saw a different consultant who x-rayed me, but told me there was nothing wrong, and I needed no treatment. This experience was repeated in 2009.

Then the pain in my hip went away, to be replaced by a greater pain in my left knee, which was so severe that I used to have to hop downstairs. I was given steroid injections into my knee with very little effect.

Have you noticed how my swagger has gone?

There is nothing quite like long-term pain and reduced mobility to knock your self confidence. Having been told once again that there was nothing wrong with my hip, which an x-ray had again proved, I seriously began to doubt my sanity. Surely four different doctors couldn’t be wrong? How could they all be so sure I was OK when I couldn’t sleep with the pain?

Things moved fast after I received a letter from Health Regulators saying that the metal-on-metal hip replacement which had been used was being recalled and I needed to be checked by an Orthopaedic Consultant. Two weeks after I retired from the NHS after 41 years of service, I had the metal-on-metal removed.

The consultant was shocked to find that the metal had crumbled and was studded in parts across my bones, which had to be removed and replaced with a bone graft, as well as a hip replacement. The scan had not shown the extent of the damage. He also removed several lesions which contained bits of metal. I also have tiny bits of metal in my kidneys which could take months or years to excrete.

I wish I could say that this was then end of the matter, swagger retuned and walking boots attached to feet.

Unfortunately, after nine weeks it was discovered that the surgery had not been successful, and would have to be redone.

Meanwhile the pain keeps me awake most of the night, I have been using crutches for six months, and need a wheelchair if I am going to the theatre or elsewhere, which requires more than minimum walking. Since walking with crutches, I have developed severe pains in my shoulders, meaning I can’t wear anything which fastens at the back, such as a bra!

My dream for retirement was to have a Border Terrier, and I had arranged to pick one up, from an animal sanctuary, just before I realised that I had to undergo more surgery. Only dog lovers will understand how devastating this was. I long to have a dog in the way that many women long to have babies, but clearly I could not look after one.

As I live alone, and was recently retired from work, having a dog would have really enhanced the quality of my life, but I hope to have one later.

Jane McK articleTwo days after retirement I got beehives at the bottom of my garden, which was to be another new hobby. A local beekeeper now comes regularly to check and feed them as I cannot do so.

I am now waiting to see a different consultant who specialises in problem hips such as mine. Six months post-op and I have no idea how long I will have to wait for the operation, before starting another 12- week recovery programme.

My respect for disabled people has really magnified. If I am lucky, my disability will only be temporary. For many people it will be lifelong, and some people have been disabled from birth. I am grateful for all the adventures I enjoyed before this happened to me.

Would it be OK if I give a few tips for people in how I, as a disabled person, experienced this?

One day, there was a fierce hammering at my door, followed by furious repeated bell-ringing. I thought it must be a police raid, and welcomed the relief from tedium. At the door was a pharmacist, delivering my medication. When I enquired about why he had nearly knocked the door in, he showed me the driver instructions which read “Patient on crutches, please knock very loud.” It didn’t occur to me that people would assume I was profoundly deaf because I was on crutches.

Having been given a lift, I managed to walk into the newsagent using crutches, to buy my paper, which felt like a major achievement. The kind assistant handed me my change and said, with a beautiful smile, “Now you put that change away carefully in your purse.” This was within six weeks of my retirement from work!

A friend of many years agreed to walk to the park across the road with me, to give me a change of scenery. When we reached the kerb she extended her arm across me and shouted “wait” and told me when it was safe to cross. I really felt that I knew better than she did how long it would take me to cross.

These are a few examples of how I was treated by very kind and well-meaning people.

Not everyone has been so kind.

I asked a friend to give me a lift to the local supermarket, and wait outside for me while I picked up a couple of things. When I slowly approached the checkout, not one, not two, but three women ran in front of me, almost knocking me aside, to get in front of me in the queue.

A woman I know fairly well bumped into me when I was standing on the pavement outside my house. She asked why I was on crutches, and I told her, adding that life now could be very lonely. With a compassionate smile she told me that she hopes I would ring her when I was completely better, so that we could go out for a coffee.

I have, of course, got many tales of wonderful things friends have done for me, from cleaning to taking me to the theatre. One of the things I most enjoy is when friends don’t just cook some food for me, but actually sit down and eat it with me and share that most precious commodity – time!

Two people give me lifts to choirs where I now belong. Yes, it’s a far cry from mountaineering, but when life throws lemons at you, you make lemonade.

My swagger has gone.

I know that when I ask friends if they would like to – go to the cinema, theatre, choir, craft centre, I am really asking if they would like to pick my wheelchair up, stash it in their car, and then push me around in it.

Thank goodness I have been blessed with lovely friends.

And the wonderful woman at the animal sanctuary visits me with her dog, so I can have a good cuddle with it. I am now knitting coats for the dogs at the sanctuary. The local librarian brings a large selection of library books for me every week on her day off! People bring me newspapers and someone clears my garden. I have a lot of support.

For those of you who are reading this who are disabled, I am sure you will recognise a lot of what I have said, and also have your own stories. For everyone else please remember, I have found that disability is not often fun, and it is different for everyone who experiences it. Please look at the person, listen to them see what, if anything, they would like you to do to help, and most of all, include us in your ordinary everyday lives.

Meanwhile, if all goes well, I might be able to walk alone by summer. If I can, watch out for more swaggering accounts of my adventures!

Jane McKears

About Jane McKears

I've loved writing all my life, and have a passion for developing short stories and poetry. I have had academic work published with regard to Child Protection, but now concentrate on fiction. My main loves are hill-walking, bee-keeping and swimming. Having recently retired from the NHS, I'm desperate to own a Border Terrier when my health and mobility improves.