LIVING HEALTHILY WITH CHRONIC AILMENTS

By Redmond O’Hanlon

Recently I attended a very interesting course, on living healthily with chronic illness.  The course took place over a six week period, at the Library in Tallaght,  from 10.30 to 12.30 each Monday.   It was under the auspices of the HSE, and there were two lecturers who acted as facilitators, Catherine Healey and Anne Philpott.   Both of these lecturers also suffered themselves from chronic ailments.

There were 10 students in all on the course, ranging in age from the early thirties to the late seventies.   Their illnesses included Ataxias, Chronic Asthma, Parkinson’s disease, Heart disease and acute depression, amongst others. I was picked up each Monday during the course by the Ataxia Ireland van, driven by Sean O’Hara.   He also collected Laura McLoughlin, who was attending the course, and he would drive us both home afterwards

The aim of the course was to enable each student, through brainstorming exercises, to improve their lifestyle, and deal positively with their problems.   Everybody in the class, including our two lecturers, expressed their individual opinions during these brainstorming sessions on every topic that was raised. We all shared our own experiences and ideas for converting the negative into the positive, by approaching the problems which arose out of our circumstances in a different way.

A huge amount of preparation by both our instructors went into the six weekly sessions.   They had designed large wall charts to help us follow our progress and make each topic more understandable. The multi-coloured markers used to highlight themes and headlines on these wall charts made the subjects we were covering clearer, and more varied and interesting than would have been the case had just one colour been used.

The course was based on a book called “Living Healthily with Chronic Conditions”, written by a group of lecturers in Stanford University, California. Some of the ‘Americanisms’ in the book could not, in the eyes of our lecturers, be used in practice in Ireland, as the Irish, in general, are too realistic in nature. For example, the American text would sometimes urge you to ‘look on the whole of the remainder of your life as an amazing adventure,’ whereas we in Ireland would be more in favour of taking one day at a time, since looking too far into the future might prove too bleak…

Two of the participants on the course, myself and Laura Mc Loughlin, and also one of the lecturers, Anne Philpott, have an ataxia.  Anne arrived one day, early on in the course, with a black eye.   She said, quite matter-of-factly, that it had happened due to an ataxic fall, and that she was fine otherwise.   Her subsequent lesson proved this to us all.  Like myself, she is a sufferer of the late onset type of the disease.  She spoke movingly about her former life, when she was fit and active, and worked as a nurse in both the Royal and the Meath Hospitals.   Since being diagnosed with Ataxia her life has changed, but she concentrated on all the activities which she could still do, and explained that she still leads an active existence, even though it might be very different from what she did before.   Her only real restriction now, she said, was going out at night alone, because she needs to use a walking frame.

On each of the two hour sessions in the six day course, a number of topics were dealt with, and then there was a lively discussion on the material that had been covered.

On our first day, we were given an overview of self management in chronic health conditions.   Prior to starting the course, we had been asked to fill out an exhaustive questionnaire about our lives, the stresses we suffered in various situations, and the degree of depression or frustration that accompanied our attempts to deal with our circumstances.   This made us look honestly at our own personal situations, and highlighted the areas we needed to address throughout the duration of the course.   On each subsequent session, there was feedback on an individual basis with regard to problem-solving. 

The importance of relaxation was stressed throughout, and to help us in this regard, we learned how to improve our breathing patterns.   One session was devoted to practicing new deep breathing techniques, and we were all taught various exercises, starting with breathing in slowly through the nose, pursing your lips, and exhaling through the mouth, while keeping your eyes closed.   While doing this, you visualise something pleasant, like sunlight or some other source of warmth, moving steadily up through your body.   This device can prove useful in combatting physical pain, as well as anxiety or depression.  

The role of meditation or religion was emphasised, in increasing a sense of wellbeing, and helping to diffuse both physical and mental distress.

The spirit of the classes we attended became much lighter as the course progressed, and was in direct contrast to the heavy, depressing mood which had pervaded the group during the first session. There was no ‘Us’ and ‘Them’ divide, ever, between the instructors and the participating students, since they too were suffering from chronic illnesses.    

Every individual was given a weekly action plan to work on, and we each had to set goals to achieve during the week that followed.  We were urged to focus on what we could do, rather than on what we could not.  The targets we set ourselves had to be manageable, and not too difficult.   We had to choose goals which we were at least 70% sure we would be able to achieve.  We each reported our progress, one by one, to the class, the following week, commenting on our rate of success, the difficulties we experienced in fulfilling our plan, and how we had dealt with specific problems.  The feedback by each individual was very positive, and in general very helpful to the whole group listening, and the use of humour in making our reports played an important part in keeping the atmosphere light-hearted.   Most people had memorable stories to tell about their activities during the previous week, which could be either sad or funny, but I noticed that, as the weeks went by, there were fewer sad stories, and much more of a sense of determination and satisfaction in their ultimate success.  Our two instructors also set themselves goals and reported back to us on the following Monday, so that we were all part of a common endeavour.  
There was a coffee break half way through each session, which gave us all a chance to chat, and get to know each other better. 

Great emphasis was placed on self management, and on what one could achieve, despite having a chronic health condition.   All the participants in the course seemed to suffer various degrees of stress, but as our instructors pointed out, most people, whatever their health issues, have to deal with stress in their lives, so we are not alone. We were advised that even a small amount of daily exercise – which would of course depend on the level of disability suffered by each individual -  would be a great stress reliever.   Gentle exercise could therefore be seen as a rewarding pleasure, rather than a difficult obstacle.  

There was an interesting lecture on nutrition, in which we were told how very important it is to have a wholesome, balanced diet, especially for anyone restricted to a wheelchair.  However, it is good, mentally and physically, to treat yourself to some chocolate, once in a while, for its feel-good factor, but not to go overboard on treats, as obesity can easily follow, especially for those who are already sporting a middle-age spread!

While the course was on, the Paralympics were taking place in London.   It was great to see Helen Kearney, a fellow ataxia sufferer, win a silver medal and two bronze medals for Ireland in the Equestrian Dressage Event.   She appeared on the Late Late Show on her return to Ireland, where she and all the other Irish medal winners were feted by Ryan Tubridy and the audience.   In her interview, she spoke about living with an ataxia and how she had faced up positively to a very altered life.   She was most inspiring, and gave us all a lot to think about.   Subsequently, she attended the most recent Ataxia Ireland function at the Stillorgan Park Hotel, and we were given an opportunity to see her three medals when she joined the gathering.   It was so heartening to see someone who is now in a wheelchair overcoming her difficulties with such courage and determination, and actually getting onto her horse and winning International renown at the Paralympics!

As the course progressed, we were given valuable pointers that can make our day-to-day lives easier to manage.   For example, fatigue can be a very debilitating factor, so it is vital not to become overstretched. Pace yourself in your activities, so that you are not overcome by exhaustion, rest when you need it, and make sure you follow an adequate sleeping pattern at night.   Faithfully take all the medication prescribed by your doctor, but recommended food supplements, such as fish and garlic oils, and general vitamin preparations can be very beneficial as well.  

It is essential never to conceal any extra health symptoms that should occur.   If such a situation should arise, consult your doctor or health professional immediately.  

It is important to work with the health care system, and not against it.   There will be times when this can be frustrating, but try and take a positive attitude to the individuals or circumstances creating the problem.   Those health care workers who are dealing with you may have personal problems of their own, of which you may not be aware – like difficulties with teenage children, or an illness or death in their own family.  With patience and calm, most situations can be resolved.  
Of course there will be difficult emotions to face, but if you look around you, you will see that there are always people who are in a worse situation than you…be thankful for the good things you have in life.

On the last day, the benefits we had all got out of the whole course were discussed.   The main thing I believe we achieved was the defeat of depression and hopelessness – perhaps not wholly, but we all felt we were on the road to better things.    Now we can concentrate on the fact that we have an action plan every week, and we can make it into a kind of game, to achieve the goals and targets we have set for our lives.                

If you curtail stress through regular exercise, healthy nutrition and honest relationships with family and friends, along with doing something worthwhile for somebody whom you can help in a meaningful way, then you will be able to manage your illness positively, and have a good quality of life. 

I personally would have liked a follow-up programme.   However, some of us purchased the excellent book on which the classes were based, and can follow the plans and advice from it manual at home.   I would strongly recommend that others should consider enrolling for this course.   It is most beneficial and takes place regularly every two to three months.  

For further information, contact either :
Catherine Healey at  086 7907778  or  01 4590708   or
Anne Philpott at  086 3941397  or 01 4752294

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