Sharon Kilty's Arthritis News Column 2000

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pacing myself

How many times do I have to overdo it and pay the consequences by spending the next three days in bed? All because I didn't really listen to my body, and take care of myself. I have lived with this disease for seventeen years now isn't it time I learned the lesson?

I've often wondered what it will take for me to really listen to my body. I think the main problem is that really I am still fighting against it all. I still think that it's o.k. to push myself when my body quite obviously disagrees. I think that I still have a deep desire to return to my previous healthy life, even though quite honestly I can't remember what that was really like. I think ultimately I am still denying that this disease means that I must change my lifestyle in order to stay well and continue to do the things in life that I enjoy.

I have had sensible weeks when I have had a couple of hours rest in the middle of the day, and I have done some regular exercise to maintain my present level of fitness and mobility. It really does mean I can carry on for longer in the evenings and spend more precious time with my daughter and husband really enjoying myself. As a consequence I feel better about myself, I have more energy and feel positive, and the whole of the quality of my life is improved.

Recognising my limitations and being realistic is so important in my overall life management so why don't I do it consistently? Old habits die hard and acceptance comes slowly. When my self esteem is low it is very difficult to love myself enough to pace myself carefully.

My early New Year's resolution is to really try hard not to overdo it by taking on more than I can manage. Also I promise not to be cross with myself if I do. I also promise to love myself enough to rest properly and consequently have more energy to spend on the quality aspects of my life. I'd like to bite the bullet and try out the mobility scooter with my dear friend. She has already had the confidence to do this and says that it has made shopping really enjoyable again. I on the other hand have not had the courage to do this so shopping to me is still an ordeal and gives me no joy what so ever!

I'm sure that if I can do these things I would be a much nicer person to live with, I would get more done because I would be happier and who knows I might even have a little bit of energy left over to be frivolous with.

equipment

After my hip replacement I came home with a van load of equipment, which ranged from a brown plastic chair (very chic) to a raised toilet seat and multiple gadgets to help me get my socks and knickers on.

My early discharge was also marked by a finger-wagging physiotherapist reminding me not to drive and not to overdo it. Quite honestly I would have agreed to anything as long as it ensured my early release.

Being a good patient I vowed to keep all agreements, besides it was August and sunny and I was sure that lying in the garden would cause me no hardships! Ten weeks later I was completely demented and plotted murder if my consultant did not agree to let me drive and give up my crutches. Fortunately for him he agreed, but I was encouraged to hold on to my other equipment for a little longer.

At first this seemed like a helpful suggestion as I still found it difficult to get on and off a standard chair and I certainly could not bend down far enough to get my socks on. As time passed however, I began to realise that I was becoming dependent on them. I no longer looked at the comfy sofas at my friend's houses and let myself collapse into them, as I became increasingly afraid that I would never get out again. Worse still public toilets became a nightmare - how do you get off them when there is nothing to hold on to? As a result I began to rely on the disabled toilets more and more, which is fine but they are not always to be found in pubs, clubs and friend's houses! As a result I started to dread going out in case I was confronted with a situation I could not manage. I quickly realised that my increased mobility problems before surgery and my convalescence had left me with a lot less muscle in my legs and at a great disadvantage in an average social setting. The equipment that I had been given was now compounding my problems, as they were not encouraging me to regain my strength and independence.

I started to look at equipment I could give up and planned an exercise programme to achieve it. I started by giving up the brown chair and ended with the raised toilet seat, which I had become very fond of.

I have since taken up walking regularly, preferably on the beach as it makes me work harder and if all else fails I can at least enjoy the view. I have also bought a static bike, which I try to use regularly but in reality I am delighted if I use it twice a week. My legs are improving slowly and I know that I have still got a long way to go. I can go out now without worrying about getting permanently stuck in a chair. Instead it just takes me time and planning to get out and I do avoid chairs without arms.

I think what I have learned from all of this is that equipment which helps you is wonderful but it's worth bearing in mind how you manage if it isn't there. Keeping it for too long can undermine your independence and life's focus can tend to be one of coping rather than improving. Try and plan an alternative strategy. That way you won't get stuck!

living well

I thought this month that I would write about my own personal obsession in life, living well! I am presently starting some research into what it means to "live well" whilst having arthritis, and what living well means to people.

Yesterday was a classic personal example of what living well means to me. It was a memory making day that I will savour for years to come, and will especially come to mind when I am having a series of bad days in bed that feel like they will never end.

It was a Saturday and traditionally in our house that's "Girlie day", which means that my daughter (who is six) and I spend the day together doing our own thing. This gives my husband a day off for a well-deserved rest, and a chance to do his own thing.

Well, yesterday we decided to go to Newquay Zoo in the afternoon. I must confess I was a little anxious about this as I had never been before and I had no idea how big it was or how it was laid out.

My resolve was to go into "tortoise mode" which means going round slowly, stopping frequently in child friendly areas and just keep going. On days like this I plan an easy dinner that my husband can slam in the oven. I also refuse to carry anything other than essentials. So we eat out for a treat and I insist on frequent cups of tea to keep me going. All of this means that I can continue until I am completely exhausted, knowing that when I get home I can just go to bed and collapse! Cessair is very resourceful and is used to getting herself ready for bed and we both cuddle down and are asleep by 7:30.

The zoo was a perfect size and reasonably flat, we saw everything and stroked everything and saw everything being fed. I paced myself well and Cessair ran around like a demented chicken. The day was beautifully sunny and warm. I used every opportunity possible to take special note of the things around me and to truly drink in the day. By the end of the afternoon I was completely exhausted and quite literally staggered back to the car.

My point is that it was worth being completely exhausted and in bed at 6:30 because to me I had achieved so much. Firstly it had been a lovely day, secondly I felt like I had been a good mum having fun with my daughter in the way that I have always imagined it should be and thirdly I felt like I had fed my own soul and boosted my own feeling of well being.

Living well and feeding your soul could involve all sorts of things. I keep telling my mum housework will still be there tomorrow but the sunny day might not and your ability to enjoy it may not be either, so take it while you can. I enjoy living in the middle of nowhere as it is peaceful and I have the most beautiful views, but most of my friends think I'm mad. I know the quiet helps me and is my form of escape. I couldn't cope with a big town now. Finding those things that make me feel good inside are important to me. They have to be part of my life management. In fact I intend to become a "wellness seeker".

mobility scooter

In my first column I mentioned as part of my New Years resolution that I wanted to try out a mobility scooter at one of the big shopping centers, as I had heard that they were wonderful. True to my promise I have now had a go, although it did not happen quite as I had planned.

My daughter had an unexpected day off from school due to the instillation of new classrooms. We planned a "girlie" day together and in the afternoon we decided to go swimming. Despite being tired already I thought it would be a good idea as I could get some gentle strengthening exercises in as well as having fun with my daughter who has only recently learned to swim. As usual I forgot that there was shopping that we needed to do. When we came out of the pool I was exhausted.

As we parked at the supermarket I noticed three scooters lined up at the side and jokingly said to my daughter "Today is the day I could really use one of those". My daughter's immediate response was "Yes, great! Go on mummy, try it!"

Cessair decided to go in the play area for an hour, so taking a deep breath I approached one of the staff to ask about the scooters. I was greeted with a big smile and whilst I tried to justify to him why I needed a scooter, he sat me in one and showed me the controls. They could not have been easier, one lever that pushes down to go forward and up to go back. The basket at the front was easily big enough for all my shopping and the seat was designed in such a way that it swiveled sideways so that you can face the shelves in order to reach up and see more easily. This also made it easier to get on and off the scooter.

So off I went around the supermarket which is more like an air hanger. I have never actually been all the way around it before. It’s one of those places that sell everything. After the initial few minutes of feeling a little self conscious, I realized that nobody was looking at me and I began to relax and enjoy myself. I shot up and down the isles checking out the bargains. I pottered through the clothes and shoe section, which is unheard of for me. By the end my basket was full and I was seriously enjoying myself. As I approached the checkout however I began to panic how on earth was I going to negotiate this? I need not have worried; all the checkouts are wide enough for the scooter and at the right height to make unloading easy. The assistant on the till was also great and offered to unload and pack for me if I had wanted. After packing I headed for the door and put all my shopping in the car before I deposited my scooter back at the scooter bay.

It was lovely to feel that I had achieved my shopping without feeling totally exhausted by the end of it all. I picked up Cessair feeling happy and relaxed.

This was such a positive experience for me that of course I am left wondering why I have never tried it before. But rather than berate myself for the past I have definitely decided that when we go swimming again it's ok for me to really exercise well because I can recuperate whilst I'm doing my shopping in comfort.

wellness diary

I am always amazed how little things can trip me up when I least expect it. I believe I am quite a confident person and unafraid of speaking my mind but recently I was caught completely off guard.

I went to one of my usual libraries to renew some of my books. Because this library is on five floors and the main entrance is on the first floor up a large staircase, it has been arranged for disabled people to have access through a ground floor door that then leads directly to a lift.

I usually arrive, press a buzzer and say "Can you let me in please?" and I am immediately let in. This day however was different. I pressed the buzzer and asked for access and the response came back "Why?" I fumbled momentarily and swallowed the desire to say something rude and managed to respond, "Because I want to use the library". I was then confronted with the comment "Can't you use the stairs then?" This really got me thinking. The answer could of course have been yes but then I would have a great deal of unnecessary pain and feel too tired to do all the other things I needed to do that day. I could also feel my anger rising as I was in no mood for long drawn out explanations. I just wanted to renew my books! I eventually managed to say "No". The response was "Oh I'll open the door for you then".

By this time I felt like I had experienced the Spanish Inquisition, an over-reaction possibly but it spoilt my trip. Instead of getting the books I needed and renewing others in a relaxed fashion, I huffed my way around the library wondering why I felt I had to justify my need to use the disabled entrance. I felt so cross about it I was unable to say anything to the staff at the time.

Later that week I did see a member of staff about this incident and she was horrified that I had been asked such a question and vowed to sort it out for me. I thought that would be the end of it, but true to her word the librarian did take it to the next staff meeting and they have now agreed a correct protocol for all staff who deal with the disabled access. She also found out for me that it was possible for me to have my card upgraded to a swipe card so that I can let myself in.

I really wish public buildings could get themselves sorted out and have standard procedures in place so that this kind of incident need never happen. I can only wonder how a more vulnerable person might have responded in this situation. I'm sure it would have put them off using that library for life. I'm glad I spoke out about it even if it may seem trivial; I believe people need to understand how their action can be interpreted.

turning a corner?

I have found the last couple of months draining, and have had great difficulty getting inspired about anything. I recognize that I am to blame for this because as usual, I have had expectations beyond my ability. It is not reasonable to hoof it round Nice and stay up late every night, come back and work hard on my assignment for University and then rush around like a headless chicken all summer holidays without paying the consequences. However, I still play mind tricks with myself and demand that I be super human and stay feeling fine.

I ignore all my body signals that it is time to slow down and this time the consequence is that I am exhausted and my knees have had enough. So now I am back in the system of consultants' appointments and the medical system is back to playing the tune that I must heed, at least to some extent. This time however, I at least feel that I know my way round a little better and I know my orthopaedic consultant well enough to be politely rude without offending him. It's interesting how things have changed over the two years since I last saw him. He predicted my new hip would give me a new lease of life and that I would overdo it. He also predicted that it would be my knees that would slow me down and that I would be back. So he was right!

This time as we discussed the options for my knees I felt much more at ease. The confidence that I have gained from getting to know him from before, plus my involvement with Arthritis Care and Challenging Arthritis meant I was able to ask him lots of questions about the various procedures and how the surgery would affect my life style. After agreeing on a possible way forward, I felt relaxed enough to ask him if he felt confident to perform the operation he was suggesting. Rather than take offence he spoke honestly about his confidence and this immediately put me at my ease. I could not help teasing him as I left that I would be checking up on his performance records later, just to make sure. Building a two way adult relationship has been worth all the effort. I can't say that it is easy and I'm still nervous about talking to the anaesthetist and others about what I will need to ensure my post-operative time is comfortable. But I know I must look after myself and tell them everything. Otherwise there is no way they can support my recovery properly and lets face it folks they want us to recover well just as much as we do.

I now feel that at least things can turn a corner. Yes I am drained but I guess I should look forward positively. I have faced a dragon and survived. Now I just need to take one step at a time. Ha! Ha! Ha!

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