ME and Ophelia

Monday, March 01, 2004


Another new energy saver

Last week, I hired a new housekeeper/cook, starting today, March 1st. I've retained my other lady for two hours each Tuesday morning. Now that I have two multi-skilled people set to help on each week day - for a total of 7 hours - I can concentrate on other things and in future be more up to receiving visitors.

The extra help will enable me to implement the lifestyle management programme that I've been planning over the past two years. And venture out beyond my gate for the first time since last March. Things are looking up.
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Six week recovery programme planned for this Summer

By summer I hope to start a six week recovery programme that's taken me two years to plan and organise. It's not a treatment but an aggressive rest and activity programme. Over the past year, I've managed to fine tune it in part: but the eating five times a day made me realise that I needed more help with the organising and preparation.

The six week programme is a strict regime of eating five times a day, resting and graded activity. It's quite a feat to accomplish because so much goes into running a household and the ins and outs of daily living, food ordering, planning etc. I've hired the additonal help because the planning and organising that's needed for all household tasks along with eating daily five veg, four fruits and main meal (fish, poultry or red meat with potatoes, rice or pasta) required too much input and management on my part.

On weekedays, we're up at 6 am. Let Ophelia out. Wash, dress, open curtains and windows, switch on hot water. Serve our breakfast, load up washing machine or take a bath. Unbolt back gate for Js 9am arrival. Expend more energy on what goes on in that hour. By the time 10am arrives, my day's energy is used up. Slows me up. Doc says like trying to run a Pentium on a 386. Takes all day to publish a post to my blog, eat, rest and manage stuff like this faulty computer. By late afternoon, I get so ill and exhausted it affects my breathing.

In January, I experienced the reduction of symptoms - the first time in four years. Over Christmas week all I did was rest, eat and blog. Had no home helpers to deal with. No postmen, workmen or deliveries turning up. No doors to unlock. No distractions or interruptions. No unexpected visitors. I need that sort of week - for six weeks in a row. Roll on Summer.
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Energy saving six week stay

Last July, the specialist GP Consultant from the Clinic visited me here at home. She identified my "baseline" as being 15 minutes. Which means my energy lasts 15 minutes before symptoms start to escalate, ie sore throat, muscle and joint pain, fever, slowing up of concentration and memory. She advised me to rest for five minutes every 20 - 30 minutes. Sounds simple in theory but impossible in practice. And, believe it or not, it's stressful (and tedious) living by 30 min alarm bells.

Searched the internet (in vain) for a silent clock or watch with 30 min alarm. Experimented with a kitchen timer but the ticking was too distracting. Tried keeping timer in kitchen but walking to and fro, every 30 mins, all day long, defeated the object. Muffled timer under a pillow but still could hear annoying ticking, like a dripping tap.

Most of us take for granted just how much goes into running a home and the daily ins and outs of living. With M.E., unless one has enough help to take care of things, it's impossible to recuperate. There's always something. Postmen, workmen, meter readers, parcel deliveries, home helpers, grocery deliveries, phone etc.

It's like trying to heal a broken leg without plaster - hoping it will just fix itself - while walking around each day to answer the door and deal with hundreds of other things that fit folks do without a second thought.

I've looked into a system for opening front and back door - and courtyard gate - by remote control but I'd need to have three wooden doors and frames replaced with pvc which would be a major project and expense. Wood doors and frames contract and expand and get a bit stuck, in the seaside air, more often than not.

Ophelia has a cat flap in front and back door but doesn't use them. Gets stormy here and unlocked cat flaps make a flapping noise and let in draughts. It's too much to keep checking on whether cat flap is locked or unlocked. It's easier to open the door at routine times. Plus, I like knowing when she is in or out - and not letting others in.

The Consultant offered me a six week stay at the M.E. Hospital in Romford, Essex. Apart from measured rest and activity, there's no medical treatment at the hospital, it's respite care. I was grateful for the offer but declined. Places at the specialist NHS & PrivateClinics are precious. My place could be put to better use by a patient with young children who is desperately in need of respite care and risks deteriorating even further if it takes too long to be offered a bed at the hospital.

Apart from that, the journey alone would cause me a six week set back, not to mention the return journey. Being away from Ophelia and my comfortable home and its upkeep. And returning home without the right help in place could make me end up back to square one and take a further year to make progress. It's taken me since last July to get, identify and train the right help.

The beauty of planning my six week rest and activity programme at home - with the right help in place 5 days a week - means that I can keep repeating the programme until there's progress. I plan to call my GP for a Physio to visit so I can learn a good fitness regime. For three years, I've aimed to walk to the beach (50 yards) and back without it making me bedbound 24/7 for 3 months afterwards. By next Summer, I feel sure that aim will be achieved. Hehe :))))

# posted by Ingrid J. Jones @ 3/01/2004
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