Sharon Kilty's Arthritis News Column 2001

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A friend recently asked me to define wellness, as he thought it was important to be clear about what I meant as a starting point for my research. This set me thinking. The more I thought, the more excited I got. My excitement is that I truly believe that there is no one way of experiencing wellness and that my journey to discover the different ways in which people find wellness is going to be hard work but exhilarating. Another way of thinking about it came to me at four o'clock the other morning when I couldn't get to sleep.

I experience a fuller version of wellness when I stop ignoring my body and demanding that it do things at a pace it can't cope with. Instead, if I negotiate doing things at a slower pace, maybe slightly differently, I still reach my goal - but I also maintain my composure and my body doesn't pay too high a price. I began to see this as a kind of two way relationship ... potty I know, but if I allow myself to see my body as separate and with a mind of its own I find it easier to make allowances for it. If I treat it nicely it, it will be nice to me in return.

This idea has made me laugh as I picture two entities negotiating a peace settlement with weapons hidden behind their backs. Now although this idea may ring bells for some people and they may agree that listening to their bodies and pacing themselves is right they will still have their version of how they do it and how they see it in their own minds. For others it will just be that "potty woman" coming up with some other strange idea.

One of my friends would think just that. He could never see himself as separate from his body and would never ignore the signals that his body was under too much stress. In fact, because of his arthritis, he makes an added effort to keep himself really fit. He has designed a very complex fitness programme to ensure that. However, he seems to be able to switch off from the mental strain that his arthritis puts on him and can focus on his life in a way that I can hardly imagine. Now it really would be a treat for me to switch off my "chattering monkey" mind. I am sure it would prove beneficial, but I know that it's not something I could undertake easily. I imagine it would do us all good to switch off from our most dominant way of functioning every now and then and try to see things from a different vantage point as it may help us to get a broader arsenal of wellness strategies. Let's face it, we could all do with more of those... So maybe I will just think about that for a while and who knows where my chattering monkey will take me next.


This month I went to a gathering of Challenging Arthritis trainers to discover more about the new manual and to get a feel for it. We all had to practice parts of the new manual to get a feel for how it had changed.

My partner and I were given the task of presenting a section on communication skills. When I looked at it I was reminded of the first time I ever came across this kind of skills building work.

At that time I was living in London and I attended an Assertiveness Training course for women. We learned about using "I" statements and avoiding "You" statements. This was a complete revelation to me at the time and I can honestly say it changed my life. I became more confident with the skills I had learned and took on more challenging situations as my confidence grew, always believing I could do it.

What struck me now looking at these skills afresh was that although I am still confident in some settings, I have become more uncertain in areas where I may be trying out something new and where I might be challenged by others as to the value of what I am doing.

It made me realize for the first time in ages just how much my life has changed, and that I do not really believe in myself to the same degree as I used to.

This recognition of my self-doubt took me by surprise. The last couple of years I had thought of myself as growing from strength to strength, what I now realize is that although this may be true I still have some inner self doubts about my abilities and that these are beginning to hamper my progress. Rather than believing that what I am doing is exciting and new, I worry that maybe it will all be too much for me and I will not reach my goals. This of course stops me from starting in the first place, which then goes on to reinforce my inability to cope.

When I thought about it for longer I realize that one the biggest ways of stopping myself was to automatically give myself a negative message when ever I thought of some thing I wanted to do. The message is usually something simple like "No, I can't do that it will be far too much work and anyway I haven't got time".

Having discovered how I am pulling the rug out from under my own feet, I have decided to try and take more note of the negative messages I am giving myself in a attempt to at least counteract them with a positive one. This will of course take time and I know that I won't believe the positive messages straight away, but hopefully with time they will start to filter through.

How can I expect others to believe in me when I don't believe in myself, they do say that self-belief is more than half the battle won!

incapacity benefit

For many years now it has been possible whilst still on incapacity benefit to work for a limited number of hours every week and earn a very small amount of money. This has been called therapeutic earnings and has needed sanctioning by your G.P. Your G.P. has to agree that this work is in your interest and is of therapeutic value. I interpret this to mean that it helps you to stay mentally well and as physically able as possible, and prevents you from deteriorating further. I may well be wrong so don't quote me on this.

As far as I can see this is the Government's attempt to support people who are presently unfit for work to begin to take the first steps back into work. Whilst this may be the intention there needs to be an extended range of further and progressive steps in order to support people with arthritis back into work without fear of losing out financially.

With arthritis it is difficult to know how you are going to feel from day to day and many would find it difficult to commit to full time employment, so the steps back into employment would need to be gradual and in close leason with their new employer. Anything less can be seen as too risky by someone who has family and financial commitments and is presently only just managing, this of course then leads to individuals being caught in the benefits trap.

The benefits trap is one that I know has been talked about endlessly but it still seems to be a big problem. Not being able to work and losing your career can be a very demoralizing experience. It's difficult to pick up the pieces and start again. The sociologists talk about the enormous significance of losing social status when having a chronic illness and have created theoretical models to try and explain its impact. The models refer to the disintegration of the "old self" and the stages involved in that individual's recovery into a "new self" and a new life with chronic illness.

To recover one's self and begin to create a new you takes time. Whilst incapacity benefit provides monetary support during a time of crisis it seems to me that the system is still far too inflexible.

It is a big jump from incapacity benefit to therapeutic earnings and then part-time or full-time employment, and it is hard to build up the confidence to try working again when your body has previously let you down. Many feel they have already lost too much and are unwilling to take the risk and try again, and who can blame them?

new knees

Some time ago I mentioned that I had been to see my orthopaedic consultant, with regards to having my knees replaced. Well this month it all happened very quickly. I was able to take a last minute cancellation with only two weeks notice and my pre-assessment clinic the very next morning after the call. Before I knew it, I was rearranging my entire life to ensure that I could go into hospital with the minimum amount of disruption to the family. By the time I was admitted I was completely exhausted.

As I had vowed in a previous column, I really wanted to be sure that I told the medical and nursing staff about all my worries so that my recovery would go smoothly. Despite my fears about being seen as a "fussy patient", I found that all the staff were extremely receptive and appreciated the information. Consequently we were able to work out a care plan together.

My biggest fear was speaking to the anaesthetist and explaining my wish to have the operation under epidural. She was very understanding and promised she would do her best to make it possible.

There has been a lot of research showing that patients who are well prepared for surgery recover more quickly and are more motivated in their own recovery programme. That night I slept well, feeling that I had truly prepared myself as best I could and that all the staff were supportive and encouraging.

My operation went well and I am on the road to recovery. Having both knees done at once does however cause double the work. In the hospital people said I must either be brave or stupid. As I have never been brave, I think I must be stupid.

Undergoing this surgery certainly does mean that you need to be committed to working hard on your exercises in order to get the maximum flexibility and the maximum benefit from the replacement joint. At times it can seem very overwhelming.

When I saw my physiotherapist last week I explained to her that I felt I was a failure because I was not able to do the amount of exercises that I felt I should be and that I really was not coping very well. She smiled in her usual knowing way and said, "So don't cope for a while". These were the most liberating words I had heard for a long time.

Talking through my fears about failing to progress gave me the opportunity to realize that I was putting too much pressure on myself as usual and that one day off was not going to set me back to square one. Consequently I spent the next day with my feet up in the garden and good friends around for company. It was a great relief. I was reminded of the thought that time is a great healer and that healing comes in many guises.

All I really need to do is to take my time and the healing will happen. After all you can't push the river. You can only go with the flow.

off to the gym

Since my surgery in May, recovery has been rather slow. At first I found all sorts of reasons why it was so slow but ultimately, I discovered from talking to others that I am in too much of a hurry as usual!

However I really don't think it is as simple as that. I was fortunate enough to be given physiotherapy as an out-patient and some hydrotherapy too. I eagerly attended these sessions every week and followed the advice of the physiotherapists, who were wonderful.

Despite my own and their best efforts my knees would not straighten and I was feeling miserable. Eventually, I saw my consultant and we discussed the various reasons why this may be happening but could come up with no easy way to resolve the problem.

It was at this stage that I began to get really angry with myself as it dawned on me that I had been waiting for others to find a solution to something that was in fact my problem. Rather than taking responsibility for my own situation, I had been glibly sitting back and waiting for the magic cure to be laid in my lap. This is of course impossible, as there are no magic solutions. Since leaving hospital I had continued to leave decisions about what was the best way forward in the hands of others. This is totally unfair and I needed to stand up and get stuck in for myself.

I realized that truthfully I had to find the answer for myself. I felt so stupid that once again I had given away my wealth of experience about my own body in the belief that others would know better. Whilst this is true for the initial stages of recovering from surgery there does come a time when, as individuals, we need to take up the reins again and create our own programme of recovery.

Having discovered this revelation, I checked out with my physiotherapist to make sure of what I should and should not be able to do with my new knees.

Next I contacted my local gym and went down for a chat. I know the instructor well from when I had my hip replaced and he loves the challenge of working out a fitness programme for someone with specific needs. Together we tried out all sorts of exercises on all sorts of equipment until we found something that was really going to work for me. I must have looked a real sight trying to get on and off different bits of equipment but everyone was very encouraging. I have now started to go to the gym regularly and things are picking up. My self-confidence is also slowly returning.

At last I feel I am on the road to recovery. I am in charge again and sorting my own life out, which is how it should be, after all.

unsolicited advice

I have recently noticed that because I have arthritis people seem to think they can give me unsolicited advice on how to manage my life. Whilst I find it very valuable and welcome it from those who like me are managing their arthritis I find it difficult to from others. It is not so much the advice that I mind it is the unspoken criticism that it is my duty to do as I am told other wise I am stuborn or irresponsible and that I should do everything in my power to stay well regardless of how ludricrous and time consuming it may appear. I find this paticularly hard to swallow when the adviser is usually someone who either drinks too much, eats too much, does no exercise or smokes a lot. However, because they are apparently health they are not being irresponsible!

This kind of unspoken critisim that I should do as I am told because it is for my own good becomes more problematic when it comes from a health care professional. I cannot say that I have ever been on the receiving end of such criticisms myself, but I frequently hear and read about it happening to others. Firstly I believe it is wrong to give unsolicited advice as a professional, the only time to give advice is within a contracted relationship such as an out-patients appointment. It is even more ill advised to criticize someone else's life style and life. Whilst it may not be the most therapeutic way of managing their disease it could well be the one that gives that person the life style and quality of life and wellness that they want now.

No one has all the answers on how to get the best out of life - that is part of life's quest for all of us. I would suggest that reflecting on the reasons for giving the advice in the first place may be more appropriate. Every one needs to look after themselves the best way they can, but at the end of the day it is all about personal choices. Choosing the best road to your own vision of wellness is a difficult journey and for me it is one that changes daily. I give myself a hard enough time when I know I could manage my disease better but everyone makes mistakes. Understanding more about my disease and believing in myself are important, but at the end of the day only I can decide what is right for me and if that includes doing things that others would percieve as irresponsible than that's just tough.

It's right for me and that's what matters! What I need is support in making those decisions in a informed and supported manner where personal views are kept out of the equation.

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