Hobbies & Interests
| An M.E. Sufferers Guide To Maintaining Hobbies & Interests |
| By Lyn Yeadon November 2002 Last Reviewed April 2007 |
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| My initial aim for this article is to give you hope with your own struggle of M.E. I would also like to educate you on using your free time constructively; it is not how much you do, but WHAT you can do and HOW you do it. I was feeling off colour and tired over Christmas 1999. I was working at my local hospital, and my husband David and I had our family staying for a few days, so it was natural that I was quite tired. I remember that I became quite ill during the week leading up to the New Year. On New Years Eve towards the end of my shift I was felling fatigued and had a severe Headache although two painkillers mealy dulled the pain. So I paid a visit to the GP unit in the hospital, and she told me to take a couple of days off work as I had a virus… I spent the next couple of days in bed, sleeping all of the time. The pain in my head was now all the way down my spine. I was dizzy and nauseated; my visits to the toilet were made by holding onto the wall whilst trying to keep my balance. I remember thinking that I was sicker than I had ever been before, yet too sick to do anything about it. To be honest, I really did not care what was happening to me at this point; I just wanted to sleep! By day three I was having trouble breathing, my chest was tight and it felt like someone was putting sharp needles into my heart. David bundled me off to the doctors (I did not want to go to hospital!) I cannot really remember the details of the following few weeks, other than my GP referring me from specialist to specialist as my symptoms increased, and I was losing weight fast, however all of the tests came back clear. I was experiencing Migraines and dreadful pain down my spine. I went to see a Neurologist who carried out an EEG. He told me I had some changes to my brain, some sort of inflammation. I was advised to have a massage on my neck and scalp. He later put me on Propranolol (beta blockers) for two months to help with the Migraines. Please see How To Treat Headaches & Migraines by Louise for more details. I also went to see a Cardiologist who found that I had Viral Cardiomyopathy, an enlargement of the heart. The treatment was complete rest! I have regular check ups now, and my heart is within the normal limits. I thank God that they picked it up early, as it is a life threatening condition. Over the next few months most of my symptoms went, I came off the Propranolol slowly. I decided to return to work, however this lasted just three weeks! I started with much enthusiasm but I was getting exhausted, then one morning I was finding it hard to get my breath and ended up in A&E. I had yet more blood tests and x-rays of which all came back negative again! I was sleeping for about sixteen hours a day, all I could do was rest. I wanted to do things but I just could not find the energy. I had so many symptoms at this point; I could not believe what was happening to me. After a month I slowly improved, but never to the extent as before. I returned to work and my boss was great, she never pushed me and gave me light duties. Never the less this lasted only two weeks; I collapsed at work. I took another trip to A&E for more tests, however they just referred me to my own GP. This was now six months after I first became ill, and my GP advised me to give up work; I agreed. He also diagnosed a condition called ‘Chronic Fatigue Syndrome’. This was June 2000. My health has improved slightly over the last two years; I am still not able to ‘work’ though. However I am able to do light housework and other duties around the house. I usually accompany David on the weekly shopping trip as well. I have tried to push myself in the past though, and felt worse off for it. So my life has changed dramatically, I tend to do things much slowly these days. I needed something to occupy my time, as I had plenty of it! Five years ago I took up folk art and decorative painting as a hobby. I was attending evening classes once a week, and I would paint whenever I had the chance. I also managed to attend a few workshops throughout the year, painting for myself and for gifts. This all stopped suddenly, along with everything else when I became ill. When I gave up work and started to feel a little better I started painting again, giving most of my pictures away. However I sold a few items as well but I was unable to keep up with the demand. Therefore I started to paint just for myself, painting what I wanted to and learning a lot along the way. I became desperately lonely and missed the company of my former work colleagues. However a few of these friends asked me to teach them folk art. My first reaction was to say no, however the more I thought about it the better it sounded and I began the preparations. Fortunately most of them had seen me at my sickest, so they knew my limitations. So one Tuesday evening I began teaching painting to a class of six eager students! They were all great, I was exhausted but they understood when I needed to rest, got dizzy or even had to cancel a class. I felt as though I was achieving something though! When my mind was on the painting, fully absorbed for a while, my symptoms became distant. It became a sort of therapy for me, and I was enjoying it once again! Concentration was the hardest thing, so I made sure I made class notes every step of the way. I found the colours quite confusing; I would instantly know the colour, but often said the wrong one! My self-esteem suffered in the beginning, because of my limitations. With care and over time it had the opposite effect though, I was with people who knew me and cared. Over the next six months we continued in this way, hardly missing a class. I was enjoying the lessons, but still feeling fatigued and the effects that it had on M.E. Therefore we had a break over Christmas and New Year. Classes resumed at the end of January, and soon I opened both another evening class and a day class on a temporary basis to see how I coped. I had to replan things and get plenty of rest, but I managed! I opened another evening class a few months later, however eventually I had to cancel it as it proved too much too soon. My classes are limited to six per class, other groups take up to twelve, but that is too much for me to concentrate on. That probably accounts to why my classes are so popular!! It is now November 2002, nearly two years since I became ill, and I tend to take each day at a time. My little hobby has now grown as I have just opened a fourth class, another day class, and these ladies are advanced with their painting. I think that I will learn as much as they will over the weeks! They do lack confidence, however this is something we can build on. I think that eight hours spent in classes a week will be my limit, as I have extra time with the preparation of the lessons and the painting of samples for my class. The latter does not have to be done every week as students paint projects over a few weeks. I usually like to have a few projects ahead; you never know how your health will be. If you have a hobby that can enjoy it will absorb you and take some of the stress out of your life, for a while at least. It makes having M.E. so much easier to bear. It need not be to the extent of my hobby, just start small, tackle something that can be done quite easily; jigsaws, computers, quilting, quilling, knitting, writing or poetry for example. If you have a family, try to find some space in your home that you can call your own. I have my ‘painting area’ set up in my sunny kitchen, facing the window, so that I can see the garden. It is better if you can leave your hobby in a permanent position, that way you can spend time with your hobby rather than waste energy setting it up. I think myself grateful, because without this illness I would have gone on filling every moment of my life, seeing, but not stopping to smell the roses. Now I have the time to reflect, time to listen and time to nurture the roses, amidst all the pain and sadness of having M.E. Of course, some days are spent in bed when it is too painful to do anything else. Other times are spent just resting, being too tired to read, even too tired to eat. Other days I have so much energy, but frightened to use up too much of it! I channel this energy into preparation and painting new projects. During World War Two, Most people who ‘survived’ the concentration camps were people who ‘hung on to something’ in some way. Some carried letters for friends, to give to the friends loved ones when they got home, most people who survived had something to aim for, and it did not matter how little. Like Louise’s struggle to keep M.E. Support running smoothly, amidst the pain from M.E, I struggle to keep my classes running smoothly, taking each day as it arrives. I accept failures if they arise, and learn and grow from this. My husband has been a tower of strength for me also through this time, and I would like to thank him for that. I would also like to thank my GP for his care. I hope you find you’re way through this illness. Whatever road you choose, I wish you all the very best. Please Tell-A-Friend if you enjoyed reading about my experience with M.E. |
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