We have created this page to share what we learned from Barry's five-day admission to Ninewells hospital, and for those who are interested in Barry to understand some of the challenges around his care and recovery.
His medical team have also written this letter for us, and Barry has given his explicit consent to share it here. If you are interested to learn more, you may find this useful.
We have been lacking a means of semi-objectively measuring "how Barry is", so that we can tell if he is improving. Following the admission and the work the multi-disciplinary team did with us, we now have a tool for recording Barry's energy and the number of footsteps he is taking each day. Prior to the hospital visit he hadn't walked for over a year.
The multi-disciplinary team at the hospital struck on an idea used in oncology for fatigue. The scale wasn't directly applicable to Barry, so we worked with him to create his own scale, which expresses a combination of energy and emotion. It features a bear, which is Barry's emoji for himself when he sends Whatsapp messages to us (because he is unable to read/write letters at the moment). We now ask Barry how he is on his scale several times a day and log these for the medical team — particularly helpful for the Community Physio and Occupational Therapist who come out on alternate Fridays. In the chart above, the blue bars represent a summary for each day.
At the moment, it's consistently below 5 so we're reducing the number of steps we're asking Barry to make (from 2x5 a day to 1x4). The number of steps are shown using the red line. You can see the faint trend lines are both going in the wrong direction at the moment.
One of the activities we completed in the hospital was a mind map of what "independence" looked like for Barry. Craig, Estelle and Barry each drew a mind map (Barry dictated for his) and we were surprised by the results. Craig & Estelle had school, going out, being with friends... Barry's did not: his world has shrunk in the last two years and he just wants to move about the house himself and be independent in his food, care and activities.
We consolidated the results into the mind map above: this articulates Barry's current outlook and helps us to understand where he is, and therefore how we can help him. Part of moving forward is about gaining his trust to aim towards these goals, and not goals we might have or wish for him (such as school, getting out). Clearly, we do desire those things for him, so this brings us to the next activity we completed...
Through our dialogue over the five days, we began to use the language of "comfort zone", familiar to most people, to mean an area or set of activities that we can undertake without anxiety. Understanding that things that are beyond the comfort zone need to be proposed and discussed with care (because even talking about them can cause anxiety and regression) helped us to appreciate we need to focus on the activities that are within the zone at the moment until we see sufficient progress to start expanding Barry's horizon. For example, when he is regularly walking in the house and achieving his view of independence as described above, then we can widen his comfort zone to include going outside more often until that becomes a "safe" activity.
As the comfort zone widens, we can start to think about mixing more regularly with more people, until one day school might be within grasp.
Left to himself, Barry would likely remain in his comfort zone. It will therefore take skill and wisdom (ourselves and the team) to determine when it's right to have these conversations. Pushing people with chronic fatigue can be detrimental.
We are often asked exactly what is wrong with Barry. Following a series of blood and other tests in 2016, with all other possibilities (including Lyme Disease) being elimated, the "diagnosis of exclusion" of CFS was given by experienced Consultant Paediatrican Dr Peter Fowlie. CFS affects each patient in different ways, so we thought it would be useful to describe Barry's experience in terms of the seven key symptoms:
Post-exertional malaise or symptom exacerbation: the key diagnostic feature of CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate. Such activity, physical or mental, has a characteristically delayed impact, which may be felt later the same day, the next day or even later. This is followed by a period of relative recovery which may last for days or even weeks.
After even simple exercise (e.g. trip to bathroom — 4 self-transfers to/from wheelchair), Barry is tired and drops in his bear scale one or two points.
Activity-induced muscle fatigueprecipitated by trivially small exertion (physical or mental) relative to the patient’s previous activity tolerance: which may be accompanied by muscle pain.
After having a shower, Barry experiences considerable pain which can last for several days.
Cognitive dysfunction: commonly including problems with short-term memory and working memory (the ability to deal with tasks quickly), problems with concentration and attention span (especially affecting visuospatial tasks), inability to plan or organise thoughts and problems with word-finding abilities. These problems are often referred to as ‘brain fog’ by people with CFS. Long-term memory is not usually affected, and progressive mental impairment is unusual.
Barry does experience 'brain fog':
At times, an inability to think clearly and give answers.
Just like real fog, or haar, the sun does burn through and Barry enjoys times of good, engaging conversation, wit and humour.
At the moment, complete inability to read or write letters (although he can read and write numbers, count down a menu to watch something and use emojis). We are using the analogy that it's like the body has diverted power to the forward shields while it fights off an enemy attack, and this non-essential communication function is not required at the moment.
Pain: that can be persistent and difficult to control. Pain is often muscular, but it can also be rheumatic or neuropathic (where it has a burning or searing quality and may be associated with paresthesia and other sensory disturbances).
This is Barry's primary symptom. He experiences a number of types of pain:
Constant ache — all over his body, muscles and joints
Stabbing pains — random, but often in his pectorals, tummy, legs, arms and hands
"Normal pain" — after exertion — due to being so inactive for so long. This type of pain is actually ok, but hard for Barry to differentiate between this and the ache/stabbing pains.
Touch — Barry experiences pain and distress with physical contact; we cannot hug, touch or kiss him except on the top of his head.
Sound — Loud and/or multiple sounds or voices is exhausting and painful; Barry cannot endure even family mealtimes.
Sleep disturbance: non-refreshing pattern that can include both hypersomnia (early in the illness) and insomnia, reversal of sleep rhythm (especially in children), vivid dreams and ‘restless legs’.
Barry, thankfully, has good sleep (8-10 hours a night) and eats well.
On-going, flu-like malaise: A general feeling of ‘being unwell’ that is accompanied by sore throat, tender lymph glands and problems with temperature control (e.g. feeling feverish, sweating episodes).
Barry is thankfully not troubled by this symptom.
Autonomic symptoms: including orthostatic intolerance. Autonomic symptoms are very common in CFS, and orthostatic intolerance refers to an inability to sustain upright activity. Symptoms of orthostatic intolerance occur after standing up from a recumbent or resting position or after prolonged standing. They include lightheadedness, spatial disorientation, feeling faint, sweating, palpitations and fainting.
One of the reasons for taking Barry to the GP initially was because his balance had been affected, walking into walls, feeling faint and falling. This is less obvious at the moment because he is not mobile, although he needs to stand for a few seconds and hold his frame before taking steps.