Archive for August, 2012

Travels with my toilet seat

I have already written posts relating to the fact that the vast majority of toilets both in public and private places nowadays are lower than in many previous decades (eg ‘Penny-Pinching on the Porcelain’ and ‘Not Going Out’). I have described how, because of knees damaged by a type of Autoimmune Arthritis, I am totally unable to sit on low seats and because of this am seriously limited to where I can go and for how long I can be away from home. Specially adapted disabled toilets are available in places such as supermarkets, airports, stations, hospitals, etc and larger business premises but visits to friends, family and smaller establishments such as pubs and clubs, can be, for me, highly problematical. Older folk are often criticised for not wanting to go out as often as they used to and I think that inaccessible toilet facilities are often the reason behind this reluctance. It can be an embarassing subject so it is not discussed and fit, able-bodied people are just not aware of these problems that some of us have. This blog post is about some of the ways I have developed to cope in order that I may maintain as much of my social life as possible.

Firstly, I carry in my handbag a retractable tape measure. If I am unsure as to whether I will be able safely to sit down on a toilet somewhere, for starters I measure the height from the floor. Anything less than 43cm (17”) is beyond my capabilities. Even when the seat height is 43cm other factors pertain. If the space between the toilet seat and the cubicle door is not sufficient, or the seat is loose, then I cannot get up unaided, so it can be a bit of a gamble! Even the seat height in many designated disabled toilets is only 43cm but at least in most of these there are hand rails supplied either side and plenty of space for a helper if needed.

Secondly, when I am away from home and known surroundings I use a larger handbag in which I am able to carry a ‘device’! I have found that an aid called a Uriwell is an absolute lifesaver on such occasions when no accessible toilet is available to me. Unlike some of the other aids on the market this one is by far the most reliably safe and easy to use in my experience. It can be used whilst standing in a toilet cubicle then immediately emptied, wiped down with an antiseptic wipe and replaced in a suitable anonymous plastic bag back at the bottom of the handbag.

And finally, when I am away from home overnight at a hotel for example, I now take with me a portable riser seat which I have found available from an online supplier. Unlike the many and various other toilet seat risers on the market this one is truly portable and can be fitted and removed from any normal toilet seat in an instant. Although it is by its very nature large and bulky it is not unduly heavy and I have taken it in my suitcase when flying to Europe on holiday. I have also used it at a hotel in this country and for this type of use, instead of having to put it in a suitcase, I designed and made a special padded carrying bag so that there was no embarassing problem getting it from the car through hotel reception. I have actually bought two of these wonderful riser seats; one I keep in its special carrying bag for holidays and similar, whilst the other resides permanently in the closet next to the down-stairs toilet at my son’s family home available for me to use whenever I visit.

The two products I have mentioned have truly made a difference to my life. The Uriwell is available from many outlets but I only know of one supplier for the riser seat. var=540052832977&ssPageName=STRK:MEWAX:IT&_trksid=p3984.m1438.l2649


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This first picture shows my toilet seat in position at a hotel in the UK. The second picture shows it in situ in the hotel bathroom in Leipzig. The third picture shows the carrying bag I made for the seat.

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damage done

1985                         2012

These last three pictures show how I am today. I post them here so that people can better understand why I am campaigning for more accessible toilets and seating. Not all disabled people use wheelchairs but some of us do have mobility problems with which we struggle on a daily basis. Better and more considerate design of public and domestic spaces, facilities and seating areas is required to cater for the needs of all.

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Yesterday I had an appointment at the Rheumatology clinic.  Whilst there I perused the collection of booklets and information leaflets, looking for one specifically about Stills Disease.  There wasn’t one, so I collected a copy of the one on Rheumatoid Arthritis which was a much updated version to the ones I’ve seen before and has within it much more and current information on treatments and medication options.When I saw the rheumatologist I asked why there was no booklet specifically on Stills Disease and he said there would be a publication but probably under an alternative name, Juvenile Arthitis, but that children are treated at a different clinic/hospital in Leeds, and they would have those booklets.

Now I have had  Stills Disease virtually all my life,  for over sixty years.  Only in the past few years, because of a severe flare, did I start to really read up about the details of the disease on the internet.  Throughout my life until this time, when people asked what was wrong with me, I just used to answer ‘arthritis’.  People generally don’t understand the difference between Rheumatoid Arthritis and Osteoarthritis, let alone the additional peculiarities of Stills.   There are many erudite blogs online if readers wish to find out more, my concern here is just to declare that it is Stills which has created me as I am here today.  I live with the active disease and also the results it has wrought on various parts of my body, mainly my eyes, my heart and most obviously, my knees!

Whilst looking for entirely different pictures yesterday I came across a picture of  my legs prior to my knee replacement operation back in the pioneering days of this type of surgery in 1985.  After the operation some of the deformity was corrected but in the intervening years it has returned and also now both legs are badly affected.  So I thought I’d take a new picture to compare.  I also took two more pictures, in a standing position.  It has come as quite a shock to me to see how badly deformed my legs are.  Of course I knew they were bad but I tend not to look in full length mirrors except when fully dressed ready to go out, and of course I have always chosen to dress in ways which disguise my wonky legs.  I used to be very embarassed at how I looked but now I am old enough not to care too much, for example, when I go to the swimming pool.  I was offered the chance of having my other knee done several years ago but there are no guarantees so I have chosen to carry on with what I’ve got for as long as possible, but I know that one day something will likely have to be done.  In the meantime, I can’t quite believe how I am managing to get around as well as I do on my pair of mishapen limbs. One challenge now is to build up what little muscle I have left with more swimming and some help from the physiotherapist.  I shall also make full use of the devices I have discovered, and invented (see page about the PhyzzEzee Rizer), which enable me to continue to get out and about.

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