and Holistic Strategies for Coping with Post Polio Syndrome
Vicki McKenna BA. Lic Ac
Overview | Extract | Ordering Information
Vicki McKenna is a member of the Lincolnshire Post Polio Network and has written this book using her personal experiences of polio, its late effects and her training in acupuncture and Chinese medicine. It can take an inordinately long time in the UK to go from GP through the rounds of the Hospital Departments before we get the assessment, diagnosis, and treatment that we need. Time and again we hear from Clinics abroad that Polio Survivors must be assessed and treated holistically. We can start to make a difference to our health by assessing our lifestyle as soon as we learn there are late effects to having had polio. We should not wait for diagnosis because any improvement we can make to our health, lessen the pain and fatigue we are experiencing will be of benefit, regardless of the diagnosis at the end.
Vicki's book takes you through an overview of PPS. Then moves on to looking at your life with a new perspective. Read ways of letting go of the old attitudes and trying new ones. Relaxation, gentle exercise, diet and the most important factor conserving energy so that you can you do things you want to do when you want to do them.
The following extract is the complete text of Chapter 7 reproduced with the permission of the author.
Earlier we saw the importance of making changes in our attitude towards life. We may not choose to have PPS but we can choose how to cope with it. By seeing PPS as an opportunity for change and growth we learn to come to terms with it and find ourselves in control of our lives once more.
We have seen how we can build energy by practising certain techniques and watching what we eat. In this way we protect ourselves from becoming stressed and damaging our sensitive nervous systems. Finally we need to focus on our outer environment and start to make changes in our homes and at work that will also help the process of sustaining and conserving energy.
If we pay attention to intuition - the teacher within that I wrote about earlier, we will find ways of doing this. Always ask your inner wisdom for guidance - through prayer, meditation, dreams, we can find solutions that prompt easier, more harmonious ways of doing the things that presently drain us. The suggestions that follow are merely suggestions - if you feel uncomfortable with them put them to one side - always, always listen to your own heart - be guided by its wisdom.
The model of Chinese philosophy provides us with a path that helps us to lead a balanced , harmonious life. This path shows us the basic foundations that we need to pay attention to in order to live this life of balance and harmony. Some of these have been written about in earlier chapters; the practise of breathing exercises and meditation, the need to let go and flow with the energy of life. It remains to be said that the wise man in Chinese philosophy traditionally cultivates a lifestyle that teaches us the following three things. Firstly we need to understand that although we seemingly lead separate lives, we are all linked and we all affect each other. Because of this we need to care for our fellows and be cared for by them. In other words, to use twentieth century terminology, we need to feel supported, In this way the human heart and spirit are fed and nourished. Secondly we need to live lives of simplicity and make our environment easy and stress free to live and work in. We do this by careful planning and organising. Thirdly we need to ground ourselves in a calming sense of routine which brings rhythm and stability to our days. In this way we can feel energised and uplifted - able to live our lives fully. Let us look more closely at each of these three areas.
As polio survivors we need to be supported in many ways. Crucially we need the emotional support of those around us but practically speaking we also need financial and physical support to assist us in our lives.
A Support Network
Marjorie often feels despair now that PPS has limited her mobility and finds it hard to ask for help. She has written a piece called Isolation which she has kindly allowed me to quote from; "It's a lonely word, isolation, on bad days it seems to envelop me like a smothering blanket cutting off sustaining air. Once I liked to be alone with my books and music, then, private time away from people and pressures provided nourishment for my soul.... Solitude was precious because it balanced the pressures of days spent dealing with people ... Now ... at times I feel imprisoned, like Rapunzel in the castle tower, without the advantage of long hair to slide down.... It is difficult obtaining help when one is proud and independent". Marjorie feels excluded and lonely and is finding it hard to tackle life without a support network.
Stressors can be endured more easily when you have a strong supportive network of family and friends. Research shows that good health depends on a support system. Ethnic communities often do not have the same stress related diseases that the rest of us do simply because they are composed of close knit communities.
As Polio survivors we need to learn that it is OK to ask for help and accept the support and encouragement that others can give. We have taught ourselves to push on independently of others - we can manage fine on our own. Here again we need to see ourselves as disabled and feel positive about it. We do not need to be ultra brave and strong - just realistic. We need to accept our disability pragmatically and trust others to help us. Many of us have support networks set up, others need to construct them. The key to support is communication - we need to be able to clearly express what help we need. In this way we will not feel that we have lost control of our independence.
Dorothea Nudelman, polio survivor, mother and author of "Healing the Blues" (a very moving account of Dorothea's experience of psychotherapy which I highly recommend especially for anyone thinking of going through the process of psychotherapy) found that PPS allowed her to make many changes in her life but she writes, 'the most complex and far reaching changes I need to make lie in communication with my spouse, my daughter and my close friends - people I interact with on a daily basis and who are closest to me. I think that for polio veterans to move forward in developing significant relationships with children, spouses and friends, we must abandon our silences and voice our needs more openly and directly. While the need to "ask for help" seems self evident, it is difficult to do when the lessons of silence were tied to independence and self reliance throughout our recovery years. Though silence served as strong motivation in our initial recovery, it is futile and destructive when used inappropriately. If we now need to rely somewhat on others for the full enjoyment of our lives, not to ask for help exhibits false pride and recklessness".
Dorothea then goes on to describe a conversation with her daughter that reveals clearly how communication is indeed the key., "Offhandedly I asked her, 'What memories about my coping with polio are vivid for you now as you look back?' Without hesitation she answered; 'Your never relaxing, never stopping when you worked at something until it was done. I always knew when the end came when you'd say; 'Okay. Now I've got to go and put my feet up.' It wasn't until recently that I knew your legs hurt you. It was that, knowing about the pain, that got my attention. I felt bad when I learned it hurt. I understood 'hurt'. Had I understood earlier, I think I'd have been a lot quicker to do things, to help. At first it made me angry, that I didn't know. Now it just makes me sad, you never said anything.' "
Dorothea was amazed that her daughter saw her mother's silence from this perspective. "I'd never seen it this way. Silence was the very thing I'd practised so as not to leave her burdened. But this 'protection' didn't serve her well any more than it had served me. Once I realised that, the floodgates of conversation opened easily. Since then, I have been entirely honest and direct with her. And she has said its so helpful, all the time, to know what's going on with me. Speaking for herself and her dad she said, "That's the best way for us to help you. The best, the easiest, the fastest Way for us to know where you're at - open communication without demanding".
Polio survivors are typically very independent people but we need to realise that asking for help does not constitute 100% dependence! As we reach out to others, we find we can still be in the driving seat. Taking the decision to clearly ask for help will improve the quality of our fives rather than trying to do everything alone and getting exhausted into the bargain.
Asking for help is hard but one way of doing this is to gather together all those who are connected with you - family, friends and explain to them how PPS is affecting you and what your needs are now. You may be needing more help with getting out and about shopping and socialising or with housework. If everyone is put in the picture they will be more able to help you.
Do not expect others to anticipate your needs you need to ask. Allow others to help and give them recognition and thanks for doing so. Often people want to help but are often put off by the feisty determined attitude of a polio survivor, Instead of wasting energy pushing support away and coping in type A style, we need to learn to ask for help and welcome it when it is given. We needed to be type A's in the past in order to survive with our disabilities - now we need to give ourselves permission to relax and reach out to others whom we trust to help us.
A trained councillor can also be part of a support network. Marjory found counselling very helpful "because many of us don't want to burden friends and family with our worries." Since the stressful period when she wrote Isolation (see above), Marjory has come a long way towards accepting her limitations and allowing others to help.
I experienced several months of therapy and it helped me enormously to know that there was someone I could offload to and who would listen as I voiced my fears. With my therapists support I learned to cope better with the changes in my life. If you see a councillor try to find someone who is not stuck on or inclined to take a "psychosomatic" view. Your therapist needs to be informed that PPS is a real organic illness and not the result of a depression!
Support groups are also very useful in helping us to cope with living with PPS. The British Polio Fellowship and the Lincolnshire Post Polio Network can both open up the world for polio survivors who feel isolated and unsupported. (See addresses in resources section). These are larger groups where the emphasis is on disseminating information and working very often for social and political change.
There are also groups of the larger, information oriented type, that are not concerned solely with polio survivors but which represent the disability movement generally. The British Council of Disabled People is one such group and was set up in 1981 as the first umbrella organisation run by and for the disabled. Many groups now talk about the "social model of disability" - that the real problem for disabled people lies in the attitudes of society rather than in us. They therefore advocate amongst other things reeducating the public to become more aware of their responsibility to make access available in the environment for the disabled. The issue of access thus becomes a civil rights issue rather than a problem that needs to be solved with charitable gestures. This is a particularly relevant issue in the light of the Governments "back to work" scheme. As one disabled activist said; "how can you get to work if you can't even get on a bus?" The importance of groups such as these lies in their positive acceptance of disability and in their encouragement to assert ones needs openly.
My own view, based on the Chinese model, is that change in the outer world needs to be brought about firstly through changes in ones own being - ones own attitudes and perceptions. When we work on ourselves and develop a calm and centred approach then we are ready to make changes that will be positive and beneficial out in the world. These processes can go along side each other - whilst working on issues of self development, we can work for social change.
We are all part of the world we live in and it is the responsibility of us all - able bodied and disabled to ensure that we work together to make changes to our collective well-being. Thus we need to ensure that buildings are erected with access for the disabled, that we no longer tolerate discrimination against the disabled and that financial benefits are fully and easily available to the disabled. But all this work of creating change in the social and political arena needs to come from the development of a calm, centred and compassionate view.
It is important not to blame others and make the world wrong for when we do we become victims to the externals in our lives. Much better to turn inwards for our solutions and trust our inner guidance. In this way we take responsibility for, and become empowered to make the necessary changes in the outer world. We then assert our needs from centredness rather than anger and bitterness and in this way will be more able to convince others of the need for change and encourage others to help us implement such changes.
Smaller self help groups usually have less emphasis on working for social and political change but will, very often, like the larger groups, be concerned with the dissemination of information regarding PPS. Generally though, these groups are more about mutual support and sharing of ideas. Through contact with other survivors you can see how they are managing their symptoms, and pick up tips for coping with your own. The risk in support groups is of reinforcing each others negative experiences of PPS. The aim of a good support group should be to create a safe space in which to share negative experiences but also to focus on finding solutions for the problems of PPS.
To set up a small support group you can contact your local newspaper with a press release outlining the date, time and place of the meeting with a brief description of PPS and the organisers phone number. Stick flyers up in local libraries and community centres etc. When you meet decide who will lead the group, who will take up roles of treasurer, secretary etc. Clarify what the groups goals will be and determine the maximum number of members. Discuss also the issue of confidentiality.
At the first meeting people can offer a brief life history along with any concerns. Inform all members of larger groups such as the Lincolnshire Post Polio Network so that they are all aware of the data that such groups have access to and the social/political work that such groups do. You could then share views and feelings on topics such as the emotional impact of PPS, coping strategies, the effect of PPS on relationships. Keep the focus positive and upbeat.
Your local Citizen's advice centre, library, social services and doctors surgery should also provide a supportive service with information concerning the type of help you may need. Through such agencies you could, for example find out about transportation programmes such as the "dial-a-ride bus" service and the taxi card facility that is available in many cities. Useful phone numbers; The National Federation of Shopmobility; 0190 561 7761. Tripscope (advise on travelling including wheelchair and scooter hire) 0345 585 641. Disabled Living Foundation; 0171 289 6111.
We need to be aware that as much as we need to be supported we are also capable of giving support. The stress pioneer - Hans Selye found that the best way to be loved was to act lovingly towards others. He described this as "altruistic egoism". Whatever we put out is mirrored back to us - when we extend love and care we will receive the same in return. Often it helps to focus on others problems rather than our own. This can be done by campaigning for civil rights, by being involved in a support group or in any number of other ways.
Marjorie has set up a small maternity agency that she runs part time from home - providing a service for others helps her feel good. Jennifer finds it hard to do the things she previously took for granted but manages to find the time to be a volunteer carer at a local nursery for children from deprived backgrounds. We can all do something, in our own way, to reach out and make a difference to the world. Taking the focus off ourselves and spending time loving others helps us to feel valued and included.
Our bodies now tire more easily and our limbs are weaker than they were. We may need to use equipment such as calipers and wheelchairs where previously we managed without. Giving ourselves permission to appear disabled by using such equipment is hard for those of us who passed for able bodied but it is crucial that we let go of pride and denial if we are to help ourselves and move forward. Many of us, particularly those not obviously affected by polio, have been able to hide a polio affected arm or leg under clothing and in this way minimise our disability. We may now feel a great resistance to using aids such as calipers or crutches for the first time. For those of us who have used these kinds of support the idea that we may now have to use a wheelchair may fill us with dread. Some of us may have problems with breathing but are resistant to the idea of using a ventilator to help with breathing at night.
It is hard to admit that we may now need more help - we fought the battles of polio and felt we had conquered the affects of the disease forever. For many of us it feels almost like a backward step into failure to start having to use assistive aids.
It is hard to acknowledge that we may need more in the way of aids than we have for many years now that we are experiencing the weakness of PPS but sticks, crutches and calipers may make all the difference to our lives. Those who have already relied on equipment such as this may now find that using a wheelchair for long distances can make mobility less of a problem. Jim, on first using a ventilator says he felt "as if I have been given a new start to life". He feels that the machine is well worth the hassles involved in learning to use it and of upkeeping and maintaining it for with it he has his life back.
To push on without the right kind of help can mean wearing out weak and vulnerable muscles - particularly those that were not obviously damaged by polio but were none the less affected. Once we let go of pride we can start to enjoy life as we zip along on our electric scooters! Adapting to change is never an easy process but as we have seen earlier - we need to let go of struggling and focus on whatever it takes to help is cope more effectively so that we may move on in our lives and start to enjoy ourselves again.
Developing PPS may mean an end to stable employment and being forced onto benefits. Most people I spoke to have had to take early retirement or revert to part time work. This may mean a decrease in their standard of living and a precarious financial future. Clare found she had to sell her flat and move out of London to live somewhere cheaper. She realised she would not be able to continue to pay her mortgage after having to stop work due to PPS. I found myself in a similar situation and like Clare moved cities to make our financial situation easier. Changes such as these are never easy but neither is living with the stress of a demanding job and PPS. Try to sort out your financial situation before you work yourself into the ground and are forced to retire. Sharron denied her symptoms of PPS for a long time before she realised; "I couldn't cope. I ended up going on sick leave and couldn't handle the thought of going back to any of my jobs mentally or physically" With the help of a councillor, Sharron began to make the changes necessary to lead a more relaxed lifestyle and now reports that her life is manageable once more.
The Benefits System in the UK
Try to change lanes as easily as possible - sit down and work out now how to manage finances working part time or not at all. This may mean going on benefits. Phone the Benefits Agency for more information on 0800 882 200. You may find that you are entitled to Incapacity Benefit, Disability Living Allowance or Severe Disablement Allowance.
Incapacity Benefit is for people under state pension age who cannot work because of illness and have paid sufficient NI contributions in the correct years.
Disability Living Allowance is a cash benefit for people under 65 who need help with personal care or for getting around. DLA does not depend on your income, savings or NI contributions. There are two components to DLA; the care component is for help with things like washing, dressing, cooking; the mobility component is for those who cannot walk or have difficulty in walking because of their illness. If you have a DLA higher level mobility award you will probably be entitled to a disabled orange parking badge which you can get from your local authority.
Severe Disablement Allowance is for people aged 16 or over who have not been able to work for 28 weeks consecutively because of illness and who cannot get IB because they have not paid enough NI contributions. You need to be classified as 80% disabled to qualify. The Community Care Act of 1997 has given disabled people the right to make their own care arrangements via a direct payments scheme. Under the act, local authorities are allowed to give people with disabilities the cash to employ care assistants to help with meal times, washing or cleaning, instead of providing them with care directly. Only 31 local authorities have established this scheme but hopefully more will take it up. As you are probably aware, the benefit system is under review. If the benefit you are entitled to is queried by a review body remember to seek advice from a support groups such as the LPPN [LincsPPN] or BPF (address in the back.).
When we stop pushing ourselves and start to slow down, it helps if we simplify our environment. In this way we empower ourselves by taking control of our daily lives and conserving energy. All it takes is some planning and organising plus a little help from friends and family in the first instance. Here are some of the ways you can alter things around the home so that you have energy left to enjoy life!
We need to see energy as a bank account - if you keep drawing on your energy without replenishing it you will wind up with an empty account. We need to live lives where we give equal weight to rest and activity for in this way we keep the bank account balanced and in the black. PPS is an opportunity to let go of lifestyles that exhaust us so that we can start to live on more of an even and balanced keel.
Chinese medicine always stresses the importance of a lifestyle that adapts to life's changing circumstances and often refers to the changing seasons as the best teacher on how to "go with the flow". When it is winter we all need to accept a reduction in activity and take more rest, as plant life does, than in the summer when everything grows and flourishes.
With PPS we may have to encourage ourselves to be more often in "winter mode" and take plenty of rest. We need to learn to value this time and see purpose in it. Just as seeds need to be dormant before developing into shoots so the daydreams and reveries of our resting time can allow us to develop helpful insights. In this way we connect with the deep wisdom of our inner selves and build energy so that we can be more active when necessary. Here are some of the ways that we can pace ourselves and lead more harmonious and enjoyable lives.
© Copyright Vicki McKenna 1999. All rights reserved.
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Document preparation: Chris
Think-tank, Cornwall, United Kingdom.
Created: 18th April 1999.
Last modification: 21st January 2010.