HIDDEN/INVISIBLE DISABILITY - SELF MONITORING EXERCISE - WITH LESSONS LEARNT

Monday - Day One

Pre work: 06.30-08:30hrs

I get up at 6.30am, earlier than I want to, in order to get to work earlier to work to try to offset the stress effects of noise and working under what is for me "the harsh lighting" in the open plan which causes me cognitive dysfunction and brain fatigue. I go online as 7am to share a morning Bible reading to pray online about people with ME/CFS, and other concerns. Then I see how many people with acute version of my own condition have a) sent me emails asking for advice. I further refine the front page. One website contact shares her reactive depression at having this condition and another is trying my dietary treatment but is unable to judge her reactions and says she lacks self-discipline. Sometimes, receiving the depressing emails before work is slightly "costly" in itself. People so acutely in need or distress worries me at some level, all day. The website editing made me late to work – so I will need to take only half an hour's lunch hour to leave at 4.30pm. That will still allow me to miss the really draining time of the day at work under the lighting, from 5-6pm.

Work: 08:30-16:30hrs

I do my own workplace adjustments which includes wearing a tennis visor in the open plan! Thanksfully my employers have given me a screen to stop me seeing someone at the desk facing me. Like dyslexics, people with ME need to lower auditory and visual stimuli at the computer and face into a corner. They have also allowed me to listen to classical music all day which is great for cutting out the noise around me and relaxing me. The workplace assessors have also instructed me to have hourly breaks from my computer. .I go to the canteen for a tea and wheat-free flapjack. All day long, I am thinking of the diet. Am I getting enough vitamins A, B, C or D? Am I getting enough zinc, selenium etc? Today, I noted that I must eat more Brazil nuts, wheat free breakfast cereal, organic orange juice and oats in general. I must organise ahead better, make personal lists. I must start planning my diet two weeks ahead, like a military campaign. When do I take my vitamins today , if not with lunch? What wheat-free snack can I prepare tonight and how do I carry it home? I can only carry enough for one day. I put in earplugs to deafen myself to colleagues' laughter. I start to internally plan the week. How should I "pace" myself this week? What are my priorities? Can I manage four social events on Tuesday, as well as working hard and managing a high profile section? I plot out my work tasks for the week. I have a breathing space to get on top of the new IT filing system and help my "team" member by covering his work – due to his overload. Should I be applying for promotion? I must master life-balancing skills. I try to accurately assess my outside responsibilities which include coping with relatives and friends in distress. Suddenly, a vulnerable friend (with ME/CFS) sends a text message asking for support as her sister is treating her badly and she was sitting beside her dying mother. I reply saying that the sister's behaviours are made unbearable by the stressful situation and reassure her that I am thinking of her. She is "doing her bit" but it is being ignored. I just wish there were other disability counsellors out there. I ask myself " What is expected of me this week workwise? What are my key priorities?" Next week I am chairing the working group I founded on Hidden/Invisible Disabilities. I must assess this week how we must prepare and create enough "capacity" in myself for this work during the week.

Post Work: 16:30-18:30hrs

After work, I visit my parents to assess their health condition. My new relaxed "style" reassures them: music therapy is working well for me. I feel in control of my life.

Evening: 18:30-11:00hrs

I had no time to do my "relaxation regime" with taped music as I have to go online to Switzerland to discuss general web matters. I am not relaxing enough. Instead, I write an aerogram to another ME/CFS sufferer (in a wheelchair in Australia) who I am very concerned about. Can she survive this period while her mother, too, is ill? I try to reassure and keep her going by writing every few days. Am I trying to "fill up" what the State, doctors and families are not doing or able to do for the elderly and the isolated chronically disabled, I wonder? Burning the candle at both ends is unwise. I go to bed too late without following my own relaxation exercise

Lessons I learnt

· Plan diet and wardrobe ahead - for forthcoming fortnight.
· Assess key priorities for the week on Monday morning. Feel in control, through planning ahead for personal relaxation - every day
· Don't burn the candle at both ends – go to bed at right time over weekend.
· Pace yourself carefully – don't try to do everything yourself. Others have their own responsibilities towards those who have no other support.
· Think of the day in four "Phases" – pre-work, work, post work and evening - each with its own objectives, priorities and "atmosphere".

Day Two – Tuesday


Pre work: 06.30-08:50hrs

I get up at 6.30am and again log on. Pray online and read the Bible. No emails today. Disabled people, mostly from UK and USA seem to be finding the ME site. Again I am late to work after having a long telephone discussion at 7am, which was too early. I do not have any distressing emails.

Work: 08:50-17:00hrs
I decide to put into practice the disability consultants' advice to have a break away from my computer for a couple of minutes every 35 minutes. I talk with my colleague about relaxing ideas and places. He tells me that he rescued an elderly lady of ninety, crying on her doorstep, this morning, who has no relatives.I think about these elderly and disabled people "out there". Alone. I develop ideas for two new coping mechanism: a) only attend social events if I feel like it just beforehand b) leave early if I want to. In other words I am freeing up the "duty-first" approach to all social events. This may remove the pressure I put myself under. Since music therapy is really helping me, I should do more of it and make space for it. I write this diary. I start on my inbox and then delete about 1500 emails. Then I start the next lot of other issues on my screen and handling various public statements until lunch . I cannot eat any of today's menu in the canteen – except for a baked potato and salad. I put my new way of treating social events into operation. I say "I am not going to this event", relax over lunch. I relax and then feel like going and arrive slightly late. I leave before the end. This has put less pressure on me this afternoon.

I hear two close colleagues (one of whom has a disability) have lost their jobs. How many people are there to counsel and comfort out there who are also struggling with a disability? Parents, elderly, friends, web contacts, colleagues….I sit for couple of minutes looking into the middle distance, unable to do anything. Then to relax, I envisage myself on a sunny terrace on a sun lounger…then back to work. I decide to take very light, physical exercise using the stairs. I am going to either walk one flight of steps or two flights each day once or twice. Nothing strenuous but I reckon that over time this will do me good, so long as I never overdo the exercise. I work all afternoon but realise that not getting to bed on time last night is draining me. I ought to buy a video recorder so that I can see late current affairs programmes earlier next day.

After Work: 17:00 – 19:00hrs
I shop for a few items for supper. I am too tired to do any housework. Start slipping into “negative cycle” due to tiredness. Lie down and try to rest with TV which is not very relaxing as the programmes are too violent or loud. Read letters from sufferers – very much the same story. Receive CD of top Canadian doctor talking about ME/CFS. Speak online with friends abroad.

Evening: 19:00- 10.00hrs
Start to watch and listen to video lecture on my computer by the top Canadian doctor. He says ME/CFS is a" process" not a "thing". He says that one should treat this invisible conditions not as a "noun" but as a "verb" with changing symptoms and interactions with the world He says that many doctors are blind to evidence before their own eyes about hidden disabilities and gives detailed story about patient with photophobiathrough ME/CFS which was clearly affecting her cognitive symptoms – yet only he realised what was happening, inspite of her losing the capacity to think when in bright lighting etc. He says that we live in a society that "does not believe in something if it cannot objectively measure it". I thought that here are aspects of scientific thinking that are completely inadequate. He talked about the holistic "clinical" approach and the “bio/social model”. He said that people with my condition can monitor their ongoing changing condition perfectly e.g. "I am better than yesterday" "I am worse than half an hour ago". This is subjective measurement and clinically valid. It was all very advanced medical language - very helpful. I got to bed at 10pm and managed to do my music exercises.

Lessons I learnt
· To see ME/CFS as a process, a "wave", " a" symphony with movements" and then to structure that experience creatively into better planned organisational structures.
· I enjoy being creative and find it relaxing, I must see forward planning creatively, allowing for the "verb", "wave" or "process" , rather like driving a car which has slightly dodgy steering in an overall straight line, by keeping my eye on the destination. Build in creative "pauses" into my coping structures and my improved forward planning.

Day Three – Wednesday


Pre work: 06.30-08:00hrs

I get up at 6.30am and again log on to do the same things as yesterday morning (read Bible and pray online), feeling rested. We add a new video on "Reaching your Full Potential in Disability" lasting 30 minutes. I remember my vitamins and get to work on time.

Work : 08:25-16:30hrs
I start to try to see my condition as a "wave" not a static state this morning and I try to go with "the flow" more. I make pauses in my morning and get a lot more done. I sound much stronger, confident and kind of forceful on the phone which seems odd". Perhaps it something to do with being more relaxed? I had at least 45 minutes for lunch. I nearly ate some tomato by mistake which I am allergic to. I found myself reading The Times in a new place at lunchtime, on the black leather sofas. Nicer. Then I suddenly thought that what I need is a long "Tick List". Something I can have to remind me, that I can tick off every week – jobs and tasks to facilitate weekly planning. A Tick List would prevent my bus card running out, money planning so that I do not find myself at lunchtime with no money, fixed task in each day, fixed times for meals, systems etc.

I look at "Tasks" programme on Outlook to see how I can use that creatively. Having accepted that my hidden condition is a "wave within a structure", a verb and not a noun, I am able to manage "planning" without thinking of it as "dreary". I think creatively. Within half an house I had long list of reminders and have set up a complex Tasks List on Tasks on Outlook. It even included recurring reminders to renew my bus card. I cross-reference it with my personal diary day by day. I insert creative reminders to do certain things at particular hours of the day, like "Get up and walk around" and "Do something else" – this is the "wave" being recognised, putting organisation within a time structure that recognises that disability is a "process" that demands and needs space. I add forward planning for my dietary needs into the Tasks List, by consulting the Canteen Menu on the intranet etc. The whole system should work as if I have a secretary. I am putting day notes in my written diary as well so that I do not forget while I get distracted doing other things. This is all an exercise in accommodating a "process" against deadlines and dates. It is a kind of "counterpoint" to create harmony. This is not easy to think about or to master, but is I think the way forward for me.

Post Work: 16:30hrs – 17:00hrs
I go shopping and eat intending to go out but then realised that I could set up my Outlook with Tasks with Management/Financial Tasks at home. So I got it up and running and started entering "Home Tasks" – it will eventually cross reference with my workplace tasks to enable me to operate completely smoothly both at home and at work.

Evening: 19:00hrs-10:30hrs
Talking to friends on internet and phone. I managed to lie down to read newspaper and watch film until 1030 and got to sleep early.

Things I have Learnt
· To see my condition as a "wave" not a wall, a verb and not a noun
· To use Tasks in Outlook – creatively both at work and at home
· To cross reference the two systems
· To apply my creative side to organisation using technology

Day Four –Thursday


Pre work: 06.30-08:00hrs

I get up at 6.30am and start on some "home tasks". I again logged on to do the same things as yesterday morning (prayer and Bible reading). I have my vitamins but forget my mobile. I need a new system to remind me to have everything including clothes ready the night before.

Work : 08:35hrs-16:40hrs
I am astonished to get into find reminders for almost everything I have to do that day on my screen. "Tasks" works well. I also get reminders on screen when to get up and walk around for a minute or so. This rests the eyes as well. The "breaks" reminders are working effectively. One bonus is that I do not have to burden myself, making "mental notes" about things – instead I can get on with strategic thinking. I use my written diary to connect home and work Tasks Lists – as well as noting immediate things to do and buy. I feel much more in control. There is a real sense of working well my whole environment and feeling I can cope with more things at once. I must not lose sight of the fact that I am managing a condition which is a "wave". Tasks even told me when to take my vitamins. I find that "process" means medically a "series of functions and changes". What does "function" mean medically? The idea is that of "moving along".

I am seeing my "syndrome" as a something "moving along" rather like a meandering river, around which I am placing like an invisible "structure” a timetable of tasks into which I am building flexible "pauses" and relaxation. This is both to enable increased capacity in my interaction with the world but also accommodates my private internal world, so that there is a harmonious, creative and dynamic relationship between the syndrome, the movement, the relaxation and the deadlines.


After Work: 16:40hrs –19:00hrs
I got amazing news at 4pm. Inspite of this, loyal to my timetable, when I got home I did housework for an hour (unheard of before) and then did research for a new life project. Everything is in order before supper time. What a difference in one week….

Evening: 19:00hrs – 11:00hrs
I did so much in one evening – my brain working so fast and my eyesight seems to be improving as well. Went to bed slightly too late though. Woke up at 3am unable to sleep and did my music relaxation tape which got me to sleep immediately.

Things I learnt
· To think of a condition as something dynamic and fluid - which thrives within a firm structure
· That I feel more confident and capable
· That I like being told by a computer to take my vitamins
· That managing a disability well is a dynamic and creative experience


Day Five –Friday

Pre work: 06.30-08:00hrs

I get up at 7am and do a Bible reading and prayer online. committing people with ME/CFS and specific sufferers as well into God's compassion and love. I read "Nothing can separate us from the love of God which is in Jesus Christ" and I think "...not even ME". I feel like dressing up more smartly and look more healthy (I am walking up some stairs at work!). Is this the effect of "my list and tasks"?

Work : 08:25hrs – 16.25hrs
I feel so much happier: I am not worrying as much. The Home Tasks, written diary and the Workplace Tasks calendar are giving me "support" I really need. My whole weekend activities are already planned in Tasks - so I can rest. Usually I am catching up with the week's overdue jobs. Last week I was muddling through: this week I am preparing to organise financial payments for a mortgage and thinking about applying for a promotion. It is not even worrying me. I feel I cope expand my capacities – due to this new structure.

After Work: 1625hrs-1900hrs
I did the shopping tasks that I had planned. My flat was tidy and organised. I worked online with business matters and had the weekend planned out – businesswise. I got to bed quite early.

SUMMARY
My whole life has changed in one week : I am not merely coping but making new headway in my outside life from being very organised. I will continue with this diary for some months learning about how I operate and keeping notes. I am able to control my life much more and feel that it is not more stressful than before. . Last week I felt overwhelmed by the Tasks of the weeks but this week I have them under control. I arrive at work with a list of things to do in the right order and with unexpected reminders which I need to action


Things I learnt
· To think of a condition as something dynamic and fluid - which thrives within a firm structure
· That managing a disability well is a dynamic and creative experience
· To see my condition as a "wave" not a wall, a verb and not a noun
· To use electronic "Tasks" in Outlook – creatively both at work and at home - to cross-reference the two systems
· To apply my creative side to organisation- using technology
· Plan diet and wardrobe ahead - for forthcoming fortnight.
· Assess key priorities for the week on Monday morning. Feel in control, through planning ahead for personal relaxation - every day
· Don't burn the candle at both ends – go to bed at right time over weekend.
· Pace yourself carefully – don't try to do everything yourself. Others have their own responsibilities towards those who have no other support.
· Think of the day in four "Phases" – pre-work, work, post work and evening - each with its own objectives, priorities and "atmosphere"
·