Sunday the 17th of March 2019 was the last time I took a church service, which as I begin to write this is a year ago today. Having fainted on that morning, and struggled to perform my duties throughout the week that followed, I decided to ask others to take my services for the next Sunday in the expectation that a weekend off would enable me to recover and return to work. That expectation proved overly optimistic, since that time I have been consistently too unwell to work and have now been diagnosed with Chronic Fatigue Syndrome.
Getting a diagnosis and treatment was very difficult, it took the better part of a year and involved numerous tests, varied medical opinions, and many bureaucratic delays, entanglements and disappointments. While all this was going on it was a grievous concern to me that I could not carry out my duties in the parishes, I was a pastor unable to care for my flock. At length medical opinion advised me that I was unlikely to be able to return to full time parish ministry and so as a consequence I decided I had to resign as Rector of the Parishes, a decision that although undoubtedly the right thing to do cost me enormous pain.
I remain convinced of the goodness and mercy of God, my wife is loving and supportive, the Church of England has been and remains helpful and concerned, but the truth is this past year has been stunningly hard.
I have lost the ability to practice my identity as a Parish Priest, and as attending church and putting my Christianity into action have both become very hard to do I have largely lost the ability to practice my faith. I have lost my job, home and security, I have lost much of my ability to play the violin, I am constantly tired, achy, often headachy and nauseous, my stress response is working overtime, my fainting response is working overtime - and my constant tiredness makes me ill-tempered. I awake after a perfectly good night’s sleep feeling like I have not slept and by evening feel like I have not slept for two days. I also seem to have lost the ability to concentrate for any significant length of time. I used to be calm, fit and busy, now I am nervous, ill and frustrated by my inability to work. From about 10 am till noon I can work at tasks that require cognitive engagement for periods of about fifteen minutes alternating with fifteen minute breaks. If I do more than that I become too ill to function.
To focus my mind and have something to work on I write words and music for my blog. Most often the words and music are things I have written in the past and that needed editing and posting. The desire to communicate is hard to stifle even in adversity.
In the afternoons I go for a walk, this has improved significantly, it seems the physical part of my being has recovered far more than the cognitive part. Conversing with people I also find inordinately fatiguing, an hour in someone’s company can knock me out for the rest of the day. I am aware that at present people are having to self-isolate because of the Corona Virus, I have been partially self-isolating for about a year now. Chronic Fatigue Syndrome is a lonely ailment.
I don’t really understand how Chronic Fatigue Syndrome works, do I not have enough energy going in to my body or is my energy leaking out? If I were a bucket would my problem be that the tap runs slow or that I have a leak?
It certainly feels like my energy drains away as I write, or converse, or try to get on with my day. I think it must be confusing for people who know me because I may look fine, I even act fine, but all the time the bucket is leaking…and soon runs dry.
Aside from the bucket there are a couple of other analogies for my condition that I find useful, the first is of oil in a car engine - as driving a car low on oil damages the engine which then must be repaired so if I do not limit my activities and rest I do not just become tired, I become very ill. There is not much oil in my engine so I have to be careful not to do damage to myself, and so if you see me proceeding along at full throttle it doesn’t mean I’m fine, it means I have been resting long enough to make some progress. The second analogy is of a bank account, it is like I do not have much credit in the bank and easily go overdrawn, which is a serious problem as the interest rates I have to pay if I do go overdrawn are tremendous.
I read recently a theory that with Chronic Fatigue Syndrome the body is in overdrive, either in fighting a virus that has passed or in dealing with past stress, it is like the body cannot dial down a response that was once necessary but now is just causing harm. That would suggest that the bucket is neither leaky nor the tap slow but rather that water is being sloshed around unnecessarily on a task that is in fact no longer needful.
With my Occupational Therapist I have established a routine for my life which is manageable and allows for the possibility of improvement. Well-meaning people give me all sorts of advice about my condition, and I find people are often inclined to encourage me to be more active, they will have to forgive me if I am only inclined to listen to health professionals with relevant qualifications and knowledge and people who have done some serious research.
At present I am living in temporary accommodation in Pickering. Our belongings are in storage. It rather feels like I am in storage. We are waiting to find out how much I recover. It may be that I can return to a part time work. I have had to live with the question ‘what will become of me’ for a year now and apparently must wait still longer to find out.
A friend recently asked me how I felt. Despite all I have written above I am quite positive, ‘fair t'middlin’ as they if asked in North Yorkshire.
I think there are a number of reasons for this, the Diocese of Leeds and concerned Parishioners have been both patient and kind, also my faith holds me up, but to be honest I think in part I am not overwhelmed by all this because I am too tired to fully grasp what has occurred, or to worry about it too much. Not knowing how things will turn out is my biggest concern at the moment and does cost me moments of fear.
Prompted by the space of a year passing I thought I would write this in the hope that it goes someway to answering the question about how I feel, also, I am aware if I do not communicate how I feel people tend to fill in the blanks with how they think I feel, which it is just human nature to do. The human consciousness cannot abide the absence of a story where one ought to be.
Despite being limited in what I can do to practice my faith I still pray for people and the world, after-all it wouldn’t do to become too focused on my own troubles and the world is always in need of prayer.
So here I am a year on from March the 17th 2019, fair t'middlin’ but having to practice patient resignation as I discover the reality of Chronic Fatigue Syndrome and wait to discover what will become of me.
I used to occasionally say the following prayer in services in my former parishes, it is in old fangled language but then my churches were on the whole old fangled. It seems relevant to me and others now. It is based on a passage from the book of James.
O God the Father of Lights, from Whom cometh down every good and perfect gift ; Mercifully look upon our frailty and infirmity, and grant us such health of body as Thou knowest to be needful for us ; that both in our bodies and in our souls we may evermore serve Thee with all our strength and might.
By Bishop Cosin
Stuff from my office packed for storage.
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