The LORD is good, a strong hold in the day of trouble; and he knoweth them that trust in him.
Nahum 1:7
The most seriously affected individuals may be bed-ridden most or all of the time and can do little or nothing for themselves. Recent research has made it clear that the view that there were no specific changes demonstrable in patients with ME has become untenable.
(Dr Derek Pheby, Director, Cancer Epidemiology Research Unit, Bristol University: ‘CFS: A Challenge to the Clinical Professions’, Physiotherapy 83, no. 2 [1997]: 53–56)
With the slow decline in my health since I became ill you could say that I had been moderately affected by ME, but that was soon to change. In the summer of 1998 I went down with shingles for the first time – unusual in someone my age, but not so unusual in those who have problems with their immune system, as is the case with ME patients. Shingles is incredibly painful, and anyone with it certainly has my sympathy!
The following year it seemed as if everything that could go wrong did go wrong. My ME became considerably worse over just a few months due to the development of numerous problems, including thyroid problems, digestive problems and liver problems, all of which are still ongoing. As a result, since that time I have been severely affected by ME, with the additional development of further difficulties, including more doses of shingles, seizures and adrenal insufficiency.
As a brief aside, during that time in 1999 when everything was going wrong, I had a visit from a lady who attended a local charismatic church which promotes ‘faith healing’. She came to tell me that she belonged to a prayer group which regularly prayed for me (for which I thanked her) and also to say that she had received a ‘word from the Lord’ that my time of illness was over and that I was now to be well. I had got to the stage of being more or less bed-bound, yet this lady, who was no doubt very well meaning but very misguided, came to tell me that my time of being ill was over. She was actually quite upset that I did not accept what she said as being from the Lord.
Why do I mention this? I have done so because, over the years, I have heard from so many people who have been caused much needless pain and distress by those who promote wrong teaching in this area. To cope with any long-term illness or disability is not easy. However, to be told that you are not well through your own fault, due to a lack of faith or something similar, is doubly hurtful and cruel.
I do believe that when a person is ill it is right to pray for healing. Indeed, it would be rather odd not to do so. If a person is not healed, it does not mean that to pray for his or her healing is wrong; rather, it means that, in addition to praying that the person might be well, we should also pray that he or she will know God’s help and strength to cope day by day. God in His mercy can and does heal people, if it is His will, but it is not always His will to do so.
Back to 1999. Having spent the previous few years at least able to get out a little locally, even though I couldn’t walk any distance, I was now having to adjust to being mainly house-bound and spending much of my time in bed. The times when I did struggle to go out were mainly for medical appointments. As I hadn’t had any benefit from either the herbal or homeopathic treatments which I tried years earlier, I then saw a doctor who specialized in nutritional medicine. Straight away he became certain that the vaccines had caused liver damage – and blood tests carried out clearly showed evidence that I did indeed have liver damage. Medication helped a little with the pain from the damage, but it didn’t actually fix it; unfortunately, I was unable to tolerate most of the medication recommended. The main benefit from seeing this particular doctor was that the results of the tests he carried out have proved to be useful as evidence when trying to fill in forms for disability benefits!
Sometime later I saw an endocrine specialist. I knew that I had thyroid problems for which I would be on medication for life, but although I suspected that my adrenal glands were not working as they should, I had never been tested for such problems. Again, the results were clear and I was diagnosed with adrenal insufficiency, for which I have to take daily medication. However, the overall results were not those I had hoped for. More problems were being found and medication tried, but my health continued to deteriorate.
A consultant who specialized in the autonomic nervous system carried out extensive tests a few years later and, as previously, numerous physical abnormalities showed up, particularly regarding the control (or lack of it) of my heart rate and blood pressure, and partly explaining the problems with my sense of balance. These findings have also proved to be useful with the disability benefits people, but no treatment was offered. Indeed, it was this doctor who, after doing some tests, said that the vaccines had undoubtedly caused brain stem damage which could not be reversed, and which would account for my autonomic nervous system not working properly.
There was one thing that puzzled all of the doctors I saw – and I saw quite a few of them. The number of physical abnormalities found increased, but normally, if a person has, for example, some kind of thyroid disorder, there is a family history of such problems. However, in my case, there was no family history of others in the family who had had problems in any way similar to my own. In many ways this was a relief, as I wouldn’t wish ME on anyone, but it is also a puzzle!
Since 1999 there were a few months here and there when I experienced some short-term, small improvements, but overall it was downhill health- wise. I was now pretty much house-bound and I had to spend the vast majority of my time in bed, with increasing pain and exhaustion. It is well over ten years since I was last well enough to attend a church service. With spending my life mainly in one room, and the feeling that the walls around me were shrinking, I became more dependent on using email and the Internet – things I could do without having to get up! I was therefore delighted when churches began live-streaming their services online. Of course, for those who are well enough, there is no substitute for being able to attend services, but for those of us who can’t do so, watching live comes in at a very good second best!
It is widely recognized that MS (Multiple Sclerosis) can follow different paths in different people. The same is true of ME—my illness being clearly progressive, becoming more complicated and more restrictive as the years go by. I often feel like a spectator watching from the sidelines as life passes by: watching world events happening on the news, being unable to attend church and family gatherings, most notably the wedding of my brother Tim to Lois in 2009. Yes, there was much joy surrounding the event, but there was great disappointment personally at not being able to be there.
A big change came for me and my parents in June 2012 when we moved from North Somerset to County Down in Northern Ireland. With Mum and Dad getting older, me unwell with severe ME, and after much talking and praying, we felt that the time was right to move to be near Tim and Lois, who lived in County Down (Lois comes from Belfast). Our home near Bristol sold within forty-eight hours of us contacting an estate agent – which was a bit of a shock to the system. However, the actual move, by road and ferry, was something of a challenge with my having severe ME – but God undertook, and we were thankful for the prayers and support of many friends both in the UK and further afield.
Since the move, Mum and Dad have settled well into a local church which is less than two miles from where we live and where they are now members. Tim and Lois belong to the same church and their home is also less than two miles from ours. Mum and Dad were able to get out and about quite a bit after we moved, meaning that they got to know the area around us quickly.
From my point of view, however, it was a difficult time. Things went downhill health-wise after the move – which was not totally unexpected – but sadly I never picked up again as hoped. Rarely being well enough to leave home – apart from for a handful of medical appointments – meant that I didn’t get to know the area where we live, and even now I still feel like a stranger here, not knowing the area and knowing only a small number of people. It’s all very different from the fit and active teenager I used to be, or from the experienced nurse I hoped to have become by this time.
