Monday, 7 April 2008

Daily Living - Progress Report (1)

OK its now 1 week since I returned home and 18 days since the operation to fillet my right thigh.

I thought it would be useful to take stock on a weekly basis to assess the extent of a return to normality. Aha! there's a bit of a problem there - first define normality.

Well a year ago normality was walking ( or rather waddling) with a walking stick about 50 metres before feeling discomfort. About 8 months ago normality was using 2 elbow crutches. About 6 months ago it was recognising I had become housebound and using a powerchair to get around indoors. 4 months ago it was increasingly being confined to bed. A brief period of respite occurred after the long term anti biotics were changed and I was able briefly, in the run up to the operation, to walk with one stick and was also be able to stand for short periods which allowed me among other activities to return to wood turning for a while.

Given that the filleting was the first stage of a 2 stage process I do not expect to be where I was a year or so ago for at least another 8 months or the end of this year.

My medium term target for normality therefore is to be able to get around with crutches, including travelling in a car (driven by someone else) or even managing to use a bus to get into the city centre.

So against this reasonable medium term target of normality what has the last 7 days seen?

Well with the swelling reduced but not gone completely I am able to manoeuvre into and out of bed without too much trouble.(albeit with the aid of the red slinky "transfer sheet" that would have been a godsend if used on the ward in the early days after the operation).

I can move around the house as well as required now that I have return to using the power chair. I have not yet managed to make it into the garden or to cross the threshold of either the front or back doors. Once I can do this and use elbow crutches an acid test of "normality" will be my ability to top up the squirrel proof bird feeders in the back garden.

Toileting and washing are manageable, although at night I still prefer to make use of an improvised urine bottle and associated bucket instead of getting into and out of bed when required. I have not yet had a shower or bath ( I was told not to have a bath for a couple of weeks after returning home) but hope to manage a steam shower in the next week.

I can sort out tea making and even making beans on toast if required, although most days I just need to reheat or microwave soup or leftovers for lunch.

My sleep pattern may be returning to normal, which was 8 hours sleeping through. For most of the last 8 months however "normal was to wake every 2 hours ( with pain) and after a waking gap of 30 to 90 minutes to resume sleeping for a further 2 hours. Sometime I would managed 3 such iterations per night.

This pattern was reinforced while in hospital and has continued through until last night. The waking periods however have tended to be 20 - 30 minutes and I am no longer waking up with pain. Last night I did manage a 3 hours session of sleep and am encouraged that this will not prove a one off.

During this last week I was able to complete the transfer of broadband provider from BT business Broadband to the Post Office. Our home LAN consists of 4 PCs 1 laptop, 1 Wii games console and up to 5 Internet cameras. The cameras are increasingly important as they allow me to have advanced warning of anyone coming to the house. I have reinstated 2 cameras for now. One camera points down the drive at the front of the house and the other is adjacent to the front door.

The post office set up is intended for 50+ novices so comes with a modem or wireless modem router which sets itself up after recognising the telephone line it is connected to. The router however uses a different range of IP addresses to that I have used in the past. Prior to the changeover I used fixed IP addresses for all resident equipment and allowed a couple of guest addresses to be allocated for visiting laptop users. All wireless activity was encrypted using WEP keys. I firmly believe its easier to learn something new for the first time than it is to "unlearn" something when updating systems.

I think I have been very good at "unlearning" and adopting new paradigms, particularly when it comes to IT and software. This is just as well as all resident devices needed to be "reprogrammed". I also had to arrange for Internet cameras to be swapped around. My wife who hates wires nonetheless agreed to do the "labouring" required while I acted as a remote gaffer issuing instructions.

I do not envisage any similar technical challenges this week. However I am about to try to arrange for a local hairdresser to visit at home to cut my hair - she had previously said that this might be possible but I have not yet put it to the test.

I also intend emailing 2 hospital consultants this week to see if forthcoming out patient appointments might be managed over the phone instead, supported by the GP surgery's Health Care Assistant visiting to take any blood required for monitoring purposes. There is a meeting on Friday afternoon that I would love to attend but do not think this will be possible. I will therefore try to submit comments and observations to others so they can be discussed if appropriate. Another meeting in 2 weeks time, of a Clinical Audit Patients Panel, is something I will try to see if it can be relocated to my house instead of its proposed location in health authority offices.

I have not yet heard from the community based physiotherapy service but rang the hospital on Friday who said they would look into it but knew that there was a long waiting list for the community service and told me that normally they get in touch a day or two before the start of a domiciliary service.

Finally I should report that the pops tweaks and twinges has lessened considerably. As a result I do think I am now in need of advise as to what I can and cannot do to accelerate further progress. I am still unable to rotate my right leg easily although I do try to tighten adductor muscles now and again. When I do "stand" upright ( on one leg) the right leg is turned out about 90 degrees. This would be quite acceptable if I was a talented ballet dancer but is a little disconcerting in my present state. You may have noticed that I excluded ballet techniques from my definition of normality!

More progress reports will follow on a weekly basis.

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