Sharon Kilty's Arthritis News Column 2002

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I know I'm bonkers

Well here we are again in a new year. I confess that I am not sorry to move into it and my wish is to stay out of hospital and have as little pain as possible this year. I guess I might manage to stay out of hospital but I will have to work hard to keep my pain levels down. Talking of pain, I recently went to my local medical library to look up some articles and was overwhelmed by the number of books that have been written on the subject of pain. They are all enormous volumes covering everything from acute pain through to emotional pain. Pain and pain management is an enormous topic and the complexities of the pains we each experience are still somewhat of a mystery. Although there is an army of treatments that can be used to control pain, our own experiences of it remain unique. I have often found it hard to describe what I am feeling without resorting to graphic descriptions, which soon don't quite explain it adequately and often leave the doctor looking completely blank. It is so important to be able to share what the experience is like in order to make it easier to find the right treatment quickly.

I had been experiencing pain in my knees for quite some time after my operation but I couldn't quite describe it clearly, or explain exactly where it was. It was only with my persistence and the persistence of the doctors, nurses and physiotherapists that we finally got to the bottom of it. Then, I was able to receive the treatment that really helped. The English language is very inadequate when it comes to different words to describe pain; we need to be more like the Eskimos, who have over 100 words to describe snow!

Being able to describe your pain adequately is no mean task, especially if it is unusual or your doctor has not come across anything like it before. You can begin to believe that it is all in your head and that you are going bonkers. In my case I know I'm bonkers and I did occasionally wonder if it was indeed all in my head. Fortunately I believed in myself enough to stick to my guns and tell myself that this pain was real. Self-belief becomes the cornerstone to self-management of pain. As we all know pain is very tiring and tends to keep you at a low ebb. When you are feeling low it is difficult to believe in yourself. Pain that is experienced is always real to the person who is experiencing it. Getting others to listen may not always be easy but the clearer we can be in our description the better.

So my resolutions for this year are to stay alert to any new pains that occur - after all they are my body's warning system - and to trust my experience and find some new words that might describe it more clearly to others.

mobility and access

This month has been a very interesting one for me. Since my knee replacements, mobility and access issues have become more important. I have discovered that society is getting better at adapting the environment to suit people with disabilities who use a wheelchair but they can't quite get to grips with those of us who cannot walk long distances using walking aids. We don't fit into a nice neat box! And we don't come with our own wheelchair or scooter. When I mention that I will not be able to walk that far, they automatically reply "Well madam, we have wheelchairs you can use". This is all well and good if you don't mind being pushed around by someone else or it's a nice flat surface and the wheel chair they provide has big wheels that you can work yourself.

I of course like to be totally independent and I hate being pushed round by someone else. With the best will in the world, they never go where you want them to, and here in Cornwall "flat" is not really part of the natural landscape. Yes I know I'm a control freak but I don't intend to change now.

Of course, some places have these wonderful scooters or "smart cars" as my local super market calls them. These are however still scarce and not all supermarkets have them because they say they are expensive and the supermarket is not big enough to warrant one. Big enough for whom? I ask.

Unfortunately not all shopping centres have Shopmobility yet. Consequently, I end up driving from shop to shop trying to park. Very few shops have somewhere for you to sit and rest while you shop so I end up going for endless cups of coffee in between just to rest up a bit before for the next excursion. This of course takes all the joy out of shopping and I freely confess that I now do as much shopping on the internet or over the phone as possible.

The next problem area arises when I want to go out and visit gardens, or old houses etc I know they all have little symbols that tell me whether they are fully or partially accessible, but what does that actually mean? I recently visited a garden and a house. Both offered disabled "dropping off points". The actual parking places were in the main car park, which seemed miles away. It begs the question, do they not think that people with disabilities go out on their own? Whilst both places offered me solution when I explained that I was on my own, it seems to me that with a little more thought these problems would not arise. I also know that there are people who would not have the confidence to ask and would consequently give up at the first hurdle.

Having said that, I have also recently heard of a garden that does provide a scooter, so you can be sure I will be checking it out very soon. Why is it that some places seem able to provide appropriate equipment whilst others are totally unimaginative? Ultimately, there seems to be a lack of thought. It seems silly to have 10 wheelchairs, when 2 wheelchairs and a scooter might meet the needs more effectively for the same outlay.

traction treatment

Well if you had told me earlier this year what lay in store for me I think I might have tried to opt out. Now I am through to the other side however I am glad I didn't make that choice. As you all know by now my knees have been a continuing saga. At the end of last year I had managed to get my pain sorted out but despite loads of physiotherapy I was still left with one leg that I could not straighten. This meant that I had to go around on crutches permanently. Apart from being cumbersome I found doing anything which involved walking much further than a hundred yards far too daunting.

Fortunately my orthopaedic consultant never rushes into anything which he is not confident will have a good result. Despite my gentle nagging, he continued to believe that pulling my leg straight whilst I was under anaesthetic would not necessarily give me a straight leg, and we both agreed that I would probably find the procedure too painful.

On yet another visit to see him, I could sense that an alternative suggestion was in the offing which was to try reverse traction. This would involve lots of string and weights which would quite literally pull my leg straight. I envisaged myself looking like something out of a hospital carry on film, and sure enough I did.

This form of traction treatment is not commonly used today and my consultant admitted that he had never tried it in this situation before, but then again according to him nobody normally has a problem straightening their legs after knee replacements. So it is confirmed, I am not normal! I agreed to the treatment after we had decided that I could have an epidural to ensure pain control.

I was very nervous going onto a ward I had never been to before and very worried about having an epidural as I am not fond of needles at the best of times. All my worries were unfounded, the staff were brilliant. I gave the anaesthetist plenty of warning about my anxieties, he was so laid back I did not have time to get frightened and the theatre nurse held my hand through out.

The next bit of fun was setting up all the weights and pulleys. As each new piece of equipment was added my ward mates tried to guess what it was finally going to be. We decided on a multigym! I was then confined to 9 days in bed with daily physiotherapy visits. Fortunately I went well prepared and the time went surprisingly quickly, thanks to good friends and family, good books and caring staff. In fact the worst thing was trying to use a bedpan, something I never wish to repeat.

Afterwards to my delight I had a straight leg and the real work has now begun. I am swimming as much as possible, to build up my muscles. I know it will be a slow job but so far things are going quite well.

reminding myself

The last couple of months have been somewhat frustrating. I have been trying to set myself some short term personal goals that would help me to feel physically stronger and lose the weight that I have put on over the last year. Despite my best intentions I have found it difficult to get motivated and stick at anything. Consequently I have been stuck in a rut for some time and this has just reinforced my feelings of doom and gloom. I had started off well, but things have fallen by the ways side.

An important turning point for me was when I was asked to run a Challenging Arthritis course with a dear friend Barbara. Neither of us had delivered a course for over a year, but we were keen. The course started well and I began to rediscover some of the self management techniques that I have not used for a long time. It was almost like doing the course again for the first time.

I have always thought that I was a good self manager and that I was still using all the techniques that I had learnt when I first did the course. I believed that I was especially good at "positive self talk".This technique means that you take a negative self message that you are thinking in your head and turn it into positive one. To my great surprise I soon realised that lots of negative thoughts had slipped into my head and I had not even noticed. Thoughts such as "I'm too tired", "I haven't got time to go swimming", "I MUST lose weight". Of course the problem with all of these is that they end up stopping you from getting started.

So during the course I started to replace these negative statements with positive ones such as "I will do this little job, and if I still feel tired I will have 10 minutes proper rest", "I only need to swim for 20 minutes, so I have got time" and lastly "I can lose weight" All of these changes have given me more energy and I am feeling more positive. Feeling more positive is of course the first step. With out making big demands on myself I have started to turn these positive messages into actions. What I have learned is that I need to stay vigilant as it is easy to slip into a negative frame of mind and this just compounds the daily difficulties of managing my arthritis. I also need to ensure that my goals are realistic, and that I don't turn them into demands with which to beat myself. Staying positive helps to support a positive view of my day and I make a point of reminding myself of the things I have achieved, even if they are only small. These "mind changes" are improving the quality and perceptions of my day to day life without expending any physical exertion. Good News for tired bodies.

an empowering experience

For many months now I have been planning a trip to Stockholm to attend the EULAR conference (EUropean League Against Rheumatism). This conference attracts people from all over Europe. It consists of people with arthritis and organisations that represent people with arthritis as well as rheumatologists, orthopaedic surgeons, and all other healthcare professionals. The conference always has a wonderful atmosphere and there is a good exchange of ideas between the various groups.

When I first considered going to Stockholm it did not feel like a viable option. This is because my walking has not been good of late and I was concerned that the trip might be too much for me. In the past I have always attended these conferences on my own, and enjoyed the independence of being able to come and go as I please. Staying focused on my goal allowed me the opportunity to think creatively about ways of solving my mobility difficulties. Firstly I considered hiring a scooter or using a wheelchair but these options felt cumbersome rather than helpful. Eventually I came up with the idea of taking a companion with me for support. However I was worried that this too might prove difficult. I needed somebody who would understand my limitations and wouldn't be offended if I needed to go to bed at seven o'clock at night. I also needed to choose someone I could get along with easily, and who would enjoy the experience of being in Stockholm as well as attending the conference.

I was lucky enough to find such a friend to take with me, and it made this conference the best conference I have ever attended. It was hard to admit to myself that I needed to take somebody with me but it certainly was the best decision I have ever made, the added support meant that I could attend everything that I wanted to, confident that there was somebody around if I needed an extra hand. In many respects I was more independent. My friend Chris also enjoyed the conference immensely and we had many debates about the subjects raised. We also had a great giggle at times! We stayed on a boat in central Stockholm, something I certainly would not have had the courage to do on my own. Being able to be more courageous made for a richer experience.

Having taken the first step, I realise that the richness of the experience can be more importance than stoically trying to remain "falsely" independent. I certainly will not hesitate to take somebody with me in future, in fact I have already asked Chris if she would like to come with me next year. I realise now that taking somebody with me has proved to be an empowering experience, I love to travel to conferences and taking a friend with me means I can continue to do so in confidence.

shopmobility

My daughter and I recently went up to stay with my mum and during our stay we decided to do a "girlie" day shopping. There were lots of things I urgently needed to get for my daughter as she was rapidly growing out of her clothes. As most of you know, I dread shopping as I cannot get around very easily and after two shops I am totally exhausted. I can honestly say I have not been inside a big department store for years as the thought of so many floors and departments just brings me out in a cold sweat. Mum suggested that we go to an indoor shopping centre where we could take our time. I agreed but was still rather hesitant.

Fortunately mum found that a shopping centre near her in Southampton had a large Shopmobility facility. I finally took the plunge and decided that if I was really going to enjoy the day, I should bite the bullet and book myself a shopping scooter. I had never used Shopmobility before so this was going to be new territory for me. When we arrived at the car park the signs to the Shopmobility centre were very clear and we easily found the specially designated parking spaces. I went in feeling a little nervous but also very excited. The staff were brilliant and immediately put me at my ease. I did have to fill out a form for their records but it was very straightforward. The centre had a large range of equipment, including electric wheel chairs and manual ones. There was also a large amount of information on disability issues which I took home with me. My scooter was a whizz!

We set off for the shops and I was delighted to see that all the shops were laid out in such a way that it was possible to get round all of them including the small boutiques.

We had a fabulous day including lunch at the centre. I was even able to park my scooter right next to the table. My daughter loved it because we were able to browse and try on lots of thing before making any decisions. At the end of the day I felt relaxed and happy and we were able to extend the day by going out somewhere in the evening for dinner as well, because for once I didn't feel exhausted and I had not bitten anyone's head off. Thanks to the staff at Southampton Shopmobility.

So the moral of this story is easy, if you have got access to these facilities in your area, be a devil and use them. If you haven't, try finding out why not and how you can get them.

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