Sharon Kilty's Arthritis News Column 2004-5

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listen to my body

Just the other day, I watched a programme with Dr Phil offering advice to people who live with chronic illness. For those of you who have not seen Dr Phil, he is a very down to earth psychologist, who gives advice to people on a whole range of issues. With regards to chronic illness, he stated that it was important to develop management strategies in order to get the best out of life, which immediately reminded me of the value of our self-management programme, "Challenging Arthritis". He then went on to say that self-management was important in order to prevent oneself becoming "consumed" by the disease.

Whilst I agree with him in principle, this reasoning made me uncomfortable. From my own experience and those I know, there are times such as an acute flare-up, when arthritis can feel all-consuming. It led me to think that what counts is how we manage those times of feeling all-consumed. I would initially get angry and frustrated with myself for being restricted, tired and in pain. I would push myself and demand that I carried on as if nothing had changed and I was fit and healthy. Consequently, I would get even more frustrated and I would end up in an exhausted heap, unable to face anything or anyone.

I was reminded by my herbalist that being angry with myself only adds to the problems and makes healing difficult. It is easy to say "Stop giving yourself such a hard time!" but much more difficult to do it.

It has taken me a long time to really hear this message and try to make changes in my behaviour. Firstly, my way of using this advice has been to laugh at myself when I notice that I am getting angry at my restrictions. I remind myself that by being angry I am only making things worse. This realisation helps me to get a grip on the situation. Secondly, I try not to think about what I used to be able to do and stick with what I can still do. Lastly, and to me most importantly, I try hard to listen to my body more, as if it were a small child. Instead of marching it through tasks, I try to encourage my body by breaking the tasks down into simpler steps and recognizing when enough is enough.

Now, I allow myself to feel consumed by the disease, but stand beside it, letting it be there, as if a constant companion, but get on with life as best I can. I certainly laugh more at my own mini-dictator inside, that shouts and screams whenever the going gets tough and even my husband James and daughter Cassie say I am easier to live with. So I must be doing something right. They do say laughter is good medicine.

disability activists

This month I would like to pay tribute to anyone who has been active in the disability movement, especially in relation to access. As we all know the law has changed dramatically in relation to equal access for disabled people and more changes will come into being at the end of this year. Even as little as two years ago it was not that easy to travel by plane as most companies insisted on disabled people filling in extra questionnaires and travelling with a carer,and as we know the budget airlines charged extra for the use of a wheel chair to get from the check in,on to the plane. I had assumed that little had changed. I am glad to say that I was wrong.

After visiting my friend Lee at my local mobility equipment shop to grab a few gadgets, we got talking about holidays. I have wanted to take my daughter Cassie to the Orkney Islands to visit my father's side of the family for ages but the prospect of mobilising all the family to pick me up, drop me off, check me in and ensure that someone was with me all the time seemed to be too much trouble. I wanted to be independent and have just myself and my daughter set off at our own pace having girlie time. Lee told me that I should be able to go on my mobility scooter and the airline company should be able to accommodate all my needs. Feeling a little sceptical, I decided to test the system and try to book.

To get to Orkney from Cornwall involves two flights, one from Exeter to Edinburgh and then another from Edinburgh to Kirkwall in Orkney. I was amazed to discover that both airlines were totally up to speed on catering for me, my daughter and a mobility scooter. They both have a slightly different system but neither saw itas a problem and there were no extra charges. My flight from Exeter will mean that I check in and then scoot to the plane where they will then put me in my seat and put my scooter in the hold. On the second flight, I check in and they take my scooter but then provide me with a chap on a golf buggy who will drive me to my seat on the plane. Who could ask for more?

I thought that asking to take a mobility scooter rather than a wheel chair would cause problems but it was quite the contrary: all they needed was the weight and dimensions of my scooter in order to accommodate me. Of course I haven't taken the trip yet, and as they say, the proof of the pudding is in the eating. It's not until August but I will let youknow how it went.

The mere fact thatI am able to make this booking, however, is a testament to all disabled organisations and people in Britain that have campaigned on our behalf. My independence is sacrosanct to me and I would like to say thank you to everyone who has spoken out on my and our behalf over the years.Disability should not get in the way of fulfilling dreams however big or small.

insufficient funds

Over the years most of us have had to go on a hospital waiting list of one sort or another, be it for admission to a Rheumatology unit for assessment and some intensive therapy, or to see the physiotherapist or occupational therapist, or of course for joint replacements. I have always been quite philosophical about this, as I know that everybody has my best interests at heart and that in time my turn will arrive.

Although it can feel frustrating at times, and the pain can be unbearable in worn out joints, nevertheless there is always an end in sight and I am clear that my health care professionals have all the tools they need to give me the treatment that is right for me.

Recently however, this situation has changed. I have been assessed as eligible for a new anti-TNF treatment, that my consultants believe could be beneficial for me. Of course the criteria used to assess eligibility is based on disease activity and impact on life style, however for the first time I felt there was also a monetary element to the assessment. I had to have tried a range of other "cheaper" treatments which had not been successful, before I was able to try this "expensive" one. Whilst I recognise that resources are not endless, it does not sit easy with me that money becomes embroiled in what should be a purely clinical decision.

Worse was yet to come as I discovered that whilst this treatment was the best clinical option and my consultant would like to have started treatment immediately, I can't have it as there is presently insufficient funds available within the health authority. So I am now on what appears to be an infinite waiting list, waiting for somebody, somewhere, to decide on where and how much funding should be allocated. This is insufferable, as for the first time my consultant and his team are unable to give the treatment they know is best for their patients. In my opinion no clinician should be put in this position. It is difficult to be philosophical about a waiting list that will be decided by bureaucrats who know nothing about my clinical needs, and the needs of others. This cannot be right. So rather than being philosophical I am being proactive and writing to everyone I can about it. It may not make a difference but at least I will be dealing with my frustration and staying positive.

holiday experience

As promised here is my report back on my holiday experience. Just to remind you I went on holiday with my ten year old daughter, Cassie, to the Orkney Islands, to visit family. This mammoth trip involved a car trip up to Exeter airport, a flight from there to Edinburgh and a two hour wait before boarding another flight which went to Kirkwall airport in Orkney. When I booked my flights I was assured that taking my small electric shopping scooter would not be a problem, as long as they had details of size and weight and type of battery.

Well I must confess it was with some trepidation that we set off for Exeter and I admit I got there with three hours to spare. The check-in staff were brilliant and did not bat an eyelid when I said I needed to check in my scooter. They offered to provide me with a wheel chair to go through security and into the departure lounge but I decided to walk. They did however meet me in the departure lounge and before the flight was called they arrived with a wheel chair, took my daughter and me to the plane and ensured we were comfortably seated.

The cabin crew were great. They phoned ahead to Edinburgh to ensure there would be a wheel chair ready for me when we landed. Things could not have gone smoother. The chap who met us at Edinburgh got our luggage for us and helped me set up my scooter. Cassie and I then went to our next check in desk. The check in line for British airways was enormous and by the time we got to the front we only had 30 minutes to make our flight. The staff were fantastic and in super quick time checked us in and rushed us through security. There was some concern about the weight of my scooter because the plane only seats 36 and weight really is an issue. However because I had all my scooter details with me they were happy that it came within an acceptable weight and there was room for it on the plane.

Again the cabin staff were helpful, even when I experienced difficulty using the loo on the plane because it really was very small. To protect my modesty they pulled a curtain across the isle so that I could keep the door open. Of course there is always something you can/t plan for. The return trip was also uneventful and enjoyable. What I discovered is that lots of people travel like this. Our plane back to Exeter had 6 wheelchair users on it and we were all seated comfortably on the plane before the other passengers boarded. I met a lovely older lady who travels regularly on her own from one end of the country to the other where she is met at the airport by various members of her family.

So I can honestly say, try it for yourself. I must confess I have started with small airports, I am not sure I would like to tackle Heathrow yet, but in principle the system should work just as well in the big airports. Be sure to carry all the details about your scooter with you and allow yourself plenty of time. Cassie and I had such a wonderful time seeing family and places that I had not visited for many years. We are already planning our next trip.

independence is just an illusion

I was recently struck by the thought that in reality "independence is just an illusion". I say this because when it comes down to it none of us are truly independent. We rely on bus drivers machanics, the milkman the economy etc etc. All of these things support our way of life and our illusion that we are independent. It only takes a power cut or a snow storm for us to really see how dependant we are on each other.

With my arthritis I have often worried about losing my independence, and becoming more dependant on others to help me. This is especially true of my family, and I have often struggled to do things like make the bed when it would have been much more sensible and ten times quicker to get someone else to do it. I have stupidly seen this as my fight to remain independent when in fact making the bed has nothing to do with being independent because it seems to me that independence is a state of mind. I was truly confronted by this the other day when I went shopping to the supermarket. I usually use the shopping scooter to get around and I consider myself to be independent when I do this. However this week the scooter was not working, so I had two options, complain bitterly and then go home or get someone to push me round in a wheel chair and shop. I have always refused to do this in the past seeing it as an infringement of my independence, but who am I kidding, the shopping still needs to be done? We think nothing of asking an expert to help us and what I needed was an expert who could walk and push a wheelchair!!

A lovely lady came to help me and we chatted and giggled our way round the supermarket, she was very kind and sensitive and I very quickly felt at ease. By the time we got the shopping in the car I felt relaxed and pleased that I had done everything I needed to and I had met somebody new. Interestingly the lady was also delighted as she said it was so nice to do something different and have a chat with the customers. What I realized was that I had not lost any of my independence by asking for help, and in fact I had maintained my independence more by getting the job done with some help. I can tell you it was a real eye opener for me. It seems clear to me now that it’s more important to reach your goals, whatever they may be, than worry about how you are going to get there.

There is a saying "The path that leads us through the most obstacles often provides the richest journey". Overcoming my ridiculous notion that being independent means doing everything for myself has certainly set me on a rich journey.

partners

For those of us who live with arthritis we accept that this is the way life is. We may not like it, we may get frustrated and depressed, but ultimately its the way things are, our lives have changed. For our families and particularly our partners, arthritis also becomes a life changing event. When I met my husband I was 24, fit and very active despite my arthritis, I loved DIY, gardening and walking, I worked full time and we also managed an educational consultancy together.

Now 20 years down the line I need a lot of help around the house I need him frequently to fetch and carry for me. DIY and gardening is now something I watch on television.

People often tell me I am brave but that is absurd, if I could walk away from my disease tomorrow you wouldn't see me for dust, the truly brave people are our partners who stay despite all the pain they see us going through and all the aggravation we give them when we get fed up. It takes a special kind of person to stay year after year, because not only have we lost our dreams they have lost theirs too. Many of the plans we had as a couple have had to change to accommodate my changing mobility. We always did everything together now, I more often than not, sit and watch and offer encouragement.

I don't want to sound miserable about this, it has its up sides too. We laugh a lot about silly things and we appreciate the things we can do together, but there is no getting away from the fact that arthritis affects my husband as much as me. I try very hard not to take the things he does for me for granted, I make a point of saying thank you and of telling him how much I appreciate what he does. We talk constantly and try not to bottle things up. I try hard to tell him how I am feeling and when I can see he is fed up I try to ensure he has space for himself. When I can see that he is really tired I try to get away for a few days so that he has space to think about nothing but himself and he can do as he pleases. We are lucky our love for each other has helped us through many sticky patches. Honouring each others needs has become a bed rock to our success.

It seems to me that staying together in such a complicated relationship takes a high degree of selflessness on the partners behalf, I am not sure I could do it. So this month on behalf of all of us with arthritis who are fortunate enough to have husbands, wives or partners I would like to say thank you to all our partners for your love and kindness, and to my husband James, thank you for enriching my life and being my rock.

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