If you are struggling with CFS/ME, Post Viral Chronic Fatigue or any other Chronic Illness I hope that in reading this it will give you encouragement, without my faith and my painting to fill my days I know that I would not be the person I am today. Yes, some days are still a struggle through the fog, other days clearer, I do belive that it is not how much you do, but What you can do and How you do it that counts. Faith can move mountains.
My history of Post Viral Chronic Fatigue.
I was feeling more tired than usual over Christmas 1999, working at the local hospital and we had family staying for a few days over Christmas 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 feeling fatigued and a really bad headache, pain killers did not help, so I paid a visit to the GP unit in the hospital, she told me to take a couple of days off as I had a virus....she was right, but it turned out to be the start of a serious virus and a journey that changed my life.
The next few weeks are fuzzy, I spent the next couple of days in bed, sleeping most of the time. The pain in my head was all the way down my spine, I was dizzy and nauseated, visits to the bathroom 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 much about it. To be honest, I just wanted to sleep.
By day three I was short of breath, my chest was tight with sharp needle like pains. My hubby took me to the doctors, by this time the dizzyness was not as bad.
I can not remember the details of the following few weeks, other than my GP referring me from specilist to specilist as my symptoms progressed, and I was loosing weight fast, however all 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 inflammation to my brain. I went to see a Cardiologist who found that I had Viral Cardiomyopathy, an enlargement of the heart. The treatment was complete rest. I reall thanked God that they picked it up early, it is a life threatining condition, my heart is within normal limits now.
Over the next few months most of my symptons went, I was feeling good, taking short walks everyday, ready for work, my GP was also happy to return me to work.
The first week of work was good, feeling a little tired was usual after such a long break, went home and slept most afternoons, made dinner and rested the rest of the evening.
The second week I was graduly getting slower, I was only working light duties, but even that was not helping, by the middle of the third week I ended up in A&E, yet more xrays and blood tests all came back negitive. They gave me more time off.
I was sleeping for about 16 hours a day, all I could do was rest. I wanted to do things but I just could not find the energy. All through this, I prayed that my hands and eyes be spared, at least that way I could still paint.
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 time I lasted two weeks, I collapsed at work. Another trip to A&E for more tests, all negitave, and they refered me to my own GP.
This was now six months after I first became ill, and my GP advised me to think about retiring due to health, I was fourty seven. I had Post Viral Chronic Fatigue.
My health improved slightly over the first two years, I am still not able to take on a commitment to even part time work.
Now ten years on I am able to do most of the housework, but only one thing at a time. I drive on good days, not on bad days, I have a disabled sticker for my car, this helps, and I also do the shopping, this I thank God for, it gives me some independance. So my life has changed dramatically, I tend to do things much slower these days. Also spreading thing out and paceing myself, If I do the shopping, then thats all I can do for the day, other wise I am back where I started.
In 1996 I took up Folk Art Painting as a hobby, attending evening class once a week, and I would paint whenever I had the chance. I also managed to attent a few workshops through the year, painting for myself, gifts, then this all stopped suddenly, along with everything else when I became ill. This turned out to be Heaven sent, as I needed something to occupy my mind and time, as I had plenty of it!
When I gave up work and started to feel a little better I started painting again, giving most of my projects away. However I was unable to keep up with the demand. therefore I started to paint just for myself, painting at my pace, learning a lot along the way, about painting, also about Jesus and about myself, my chance to change my life.
I became desperatly lonely and missed the company of my former work colleagues and friends. How ever a few of these friends asked me to teach them Folk Art, my first reaction was to say no, however the more I was asked the more I thought about it the better it sounded and I began preparations. Fortunately most of them had seen me at my sickest, so they knew my limitations. God had a plan, even then!
So one Tuesday I began teaching Folk Art and Decorative Painting to a class of eager students! They were great, I was exhausted but they understood when I needed to rest, got dizzy or even had to cancell a class. I felt as though I was achieving something though! When my mind was on painting, fully absorbed for a while, my symptoms became distant, it became a sort of therapy for me, I was enjoying it once again!
Concentration was the hardest battle, so I made sure that I had class notes every step of the way. Colours were confusing, I would know the right colour but often say the wrong one. My self esteem suffered in the beginning, because of my verbil mistakes and limitations. With care and over time it had the opposit effect though, I had my faith and I was with people who knew me and cared. Six months later I was enjoying the lessons, still feeling fatigued and the effects it had on me, I relised my GP was right, it may never go away.
By November 2002 I volunteered teaching another small group, Word by mouth had really opened a new start for me, my classes were kept small only six in the class, no wonder they were so popular. I thought I was coping well and by demand, I opened another class, these ladies were advanced students and needed more confidance than painting skills. That ment spending a few hours a week teaching, plus all the unseen work in prep and painting samples. This was to take it's tole on me, I had to learn to say No, a hard lesson learnt as I relised I could not push this illness away.
By October 2007 I had to have a break from painting, the remainder of the year I rested, this time helped me to re-arrange my priorities again, I had taken on too much, I resumed one class in february 2008.
If you have a hobby that you can enjoy it will absorb you and take the stress out of your life, for a while at least. It makes having CFS 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 examples. If you have a family, try to find some space in your home that you can call your own. My painting area is set up in my sunny kitchen, faceing 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 God's roses. Now I have the time to reflect, time to listen and time to nurture the roses, admist all the pain and sadness of haveing post viral chronic fatigue. Of course some days are spent resting when it is too painfull or fatigued to do anything else, in these times it becomes too tired to eat or read, even having a converstation is tyring. Other days I have so much energy, but frightened to use up too much of it, I try to channel this energy into positive things, things I feel I can achieve without running on empty.
(Running on empty is a good book to read about CFS).
My struggle, your struggle, amidist the pain from a chronic illness, I struggle to keep my class running smoothly, my home and family, taking each day as it arrivies. I accept failures as they arise, and learn to grow from this. My husband has been a tower of strenth 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 and pray that you find your way through your illness, Whatever the road you choose, I wish you all the very best.
I leave you with a special prayer, this prayer helped me and a few other people in my life;
Lord Jesus, I come before you, just as I am. I am sorry for my sins, I repent of my sins, Please forgive me. In your name I forgive all others for what they have done against me. I renounce satan, the evil sprits and all there works. I give you my entire self, Lord Jesus, now and forever. I invite you into my life Lord Jesus, I accept you as my Lord, God and Savior. Heal me, change me, strenthen me in body, soul and spirit.
Come Lord Jesus, cover me with your precious blood, and fill me with your Holy Sprit. I love you Lord Jesus. I thank you Jesus. I shall follow you every day of my life. Amen.