Sharon Kilty's Arthritis News Column 2008-9

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second rate service

I would like to start my column with an apology this month because I plan to have a good moan, about a few things that really do frustrate me on a regular basis. Firstly I would like to talk about service call. This is a wonderful idea, I have a little box with a button that I point at the service call receiver and some nice kind person comes out and fills up my car with petrol for me. I have a special bank card which allows me to sign for my petrol and off I go.

If only it was that simple.  More often than not I am ignored, or the cashiers don't know what the alarm is that goes off to tell them I need help or most commonly of all there is only one person on duty and they refuse to come and serve me. I have to say this is not true at super markets but often true at petrol stations.  

To overcome this problem I always ensure that I have at least a quarter of a tank when I go to fill up and if I can I use a petrol station where they know me, however when I am on motorways or generally traveling around I always find it a little annoying that despite the fact that these places have signed up to provide a service they don't always do so. Can you imaging the public outcry if this principle applied to all drivers, disabled or able bodied. Say one in three drivers was refused petrol on the grounds that the one cashier on duty couldn't ring up their sale therefore they couldn't have any petrol. But oh no as usual it is just us second class citizens the disabled who have to put up with such poor quality service. So come on petrol stations buck up your ideas please. 

Secondly I would like to mention lowered curbs, these are the bane of my life. There are two problems really, either the lowered curbs are miles apart which means I have to do wild detours just to cross the road thus wasting the battery on my little shopping scooter or they are not lowered enough so I can’t get up them safely which means I then have to wander up and down the road with the traffic trying to find another lowered curb. I have learned where all the curbs are locally and I have learned the shortest route from one to another, however again this becomes more of a problem when I am somewhere new, I must look a real site zipping up and down the road just trying to find a way to get back on the pavement. So my plea to all councils is please can we have lowered curbs that are level with the road and please can we have them at sensible distances apart like every 20 metres. I might them come home from a shopping trip feeling that I have enjoyed the day rather than thinking I need to write yet another letter to the council.

Well I feel better now, so it must be true that a problem shared is a problem halved.

celebrating our children

I would like to pay tribute to a special group of people this month who have to live with arthritis every day even though they don’t have it themselves – our children. My daughter Cassie who is now thirteen is just one example of many children out there who live with a parent who has a disability. She, and I am sure all of our children never complain about the things we cannot do and grow up with a wonderful level of compassion and understanding of what life with arthritis might be like.

Like our partners our children see us going through good times and bad and it must be difficult for them to watch someone they love in pain. When my daughter was three and I was in a particularly stressed mood she came up to me and said ‘mummy you need to take some painkillers and go to bed’. She was so right.

As my daughter has reached her teenage years, which are difficult at the best of times, I have seen her struggle with her self image and her need to belong to a peer group, but I am very conscious that having a disabled mum makes this journey more difficult. For all teenagers parents are an embarrassment at the best of times but introducing your friends to a mum with arthritis can be difficult. She handles this added issue very well and has always been proud of me but I know it can’t be easy. Her friends have more questions about me than about other mums and answering those questions is challenging when you are trying to be ‘cool’ and confident.

I have to say all her friends are brilliant and enjoy the freedom of our house rules. They quickly learn where the crisps and biscuits are kept and enjoy the freedom of cooking their own pizzas and generally helping themselves. They also quickly learn how to fill and empty the dishwasher and where we keep spare duvets and towels for sleepovers. It is true that my daughter and I can’t go surfing together or do lots of other physical things but I can make it possible for her to do these things with her friends and together we have found our own special activities, particularly shopping.

We constantly hear about young people today terrorizing neighbourhoods but I am certain that there are a lot more young people out there doing good things. Some of them support a parent with a disability, or are carers of someone with a disability. Many of them work hard at school and have a large network of ‘real friends’ who see them as an individual. I would like to pay tribute to all our children and their friends who can see past disability and make real contact with us. They enrich the world and take the gift of tolerance and understanding with them into their adult lives. Like our partners, they are the unsung heroes of family life with arthritis.

pet therapy

In past columns I have mentioned that it is our partners and children who are truly brave when it comes to living with arthritis, they are the ones who have to watch a loved one in pain and support them, whose life plans are often changed in the light of our arthritis. They have the courage to stay with us in the good times and the bad and they have choices about staying and going, we merely have to live with it because we have no other choice. Another group who often gives solace when we are flaring badly is our pets. In this instance I am primarily talking about cats and dogs.

On those morning when I wake up feeling stiff and unwilling to get started, my dog Topaz, a King Charles Cavalier, is always there with a friendly expectant face and a waggy tail. Feeding him and taking him for walks is one of the things that motivates me in the morning. In return he is my loyal companion, always pleased to see me and always up for a new adventure.

There are of course many working dogs and most recently I have been fortunate enough to meet dogs for the disabled who are especially trained to carry out simple tasks for their owners - hearing dogs who alert their owners to important day to day sounds such as the door bell or a fire alarm, and of course dogs for the blind. I have noticed that these dogs give so much more to their owners than the simple fulfilment of their learned tasks. There is true companionship and the confidence of both grows as the relationship develops. Not all of us have a working dog but our doggie companions seem to know when we are having a bad day. Topaz is happy to forgo his walk in the lane when I am flaring badly. Instead he will spend his day by my side on the bed, keeping me company and sitting quietly. He makes me smile and reminds me of the eternal optimism that these animals have. This delightful trait also reminds me that today might well be a bad day but tomorrow might not.

Our cats of course are a totally different animal and have a strong sense of self interest. Having said that, they never cease to amaze me. When I was very ill, my cat Pooky stayed on the bed with me throughout, with only short comfort breaks when my husband was around. This may not sound remarkable but Pooky has always been an outdoor cat with scant regard for humans. During those two weeks I stroked him for hours and he purred lovingly. As soon as it was clear that I was on the road to a full recovery, he abandoned me and went back to his nomad ways. I have never forgotten that gesture of support and I am grateful for the fickle nature of all those cats who allow us to share their houses with them.

befriending arthritis

I have often heard people say that despite their arthritis they go on fighting and pushing themselves as giving up would be wrong and a sign of failure.

Whilst I understand this sentiment I would have to say I disagree with it. It has taken me a long time to come to the understanding that for me the best way to manage my arthritis is to accept it as it is, and to go on accepting it every day.

This does not mean I give up and do nothing in a resigned way, rather it means that I recognise that my arthritis is part of the person that I now am. Sometimes I am in lots of pain and sometimes I am not. I try hard to treat my body with respect and after many years I have accepted finally that there is not going to be a magic cure just round the corner.

There are of course medical treatments that can really help with the overall management of the disease like the anti TNF treatments. However they do not help everyone, myself included. Despite this, whatever happens life goes on and as I see it I have two choices. I can accept my arthritis as it is and live my life fully in this body that I have or I can go on resisting it or fighting it forever more.

My philosophy is that there are lots of people out there who have to deal with terrible things every day and in the grand scheme of things my arthritis is at least something I can manage for myself. On those days when I really am fed up with everything and I don’t feel able to manage I can give myself permission to grumble and moan and stay in bed without feeling guilty about it. I can also remember that tomorrow is another day and the chances are I will feel a bit better.

It is of course easy to say these things as I have had 26 years to get used to living with my arthritis and for those of you who have had your arthritis for a short amount of time I do remember how miserable and lonely that time can feel. All I can say is time does heal, you are not alone and making your arthritis your friend and working with it is a lot less tiring than fighting it all the way.

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