Hello world!

I have started Phyzzezee as a means to help address some of the day to day difficulties experienced by those of us who find ourselves at some stage in life, for whatever reason, physically challenged or even disabled as effectively functioning members of society.

I want to encourage discussion and comment and the sharing of coping strategies that have helped improve our abilities to stay active.

Phyzzezee is not just for people who self-identify as being ‘disabled’ but also for those who may be just getting older and more frail, or perhaps be temporarily affected by illness or accident.  It’s very likely that many or even most of these people will also not be online to read this so I am relying on their friends, family, carers etc. to perhaps pass on information and also maybe comment on their behalf.

Several issues have recently come to a head for me personally and Phyzzezee allows me a place to try and raise public awareness with a view to improving life not only for myself but hopefully for a perhaps otherwise silent minority.


Ahead of time am I.


I have been remiss in sharing useful information and writing up recent events. There is much catching up to do when time permits! I suddenly realised that instead of just sharing via facebook I should be posting here so that the information is more retrievable and has a much longer ‘shelf-life’.  So here is the post which has inspired this realisation.  It may be the first step in the way forward, especially for those of us who try to manage our conditions without the use of medication.  It’s quite a long article and there are no quick and easy solutions offered but it seems to assert and confirm what I have always intuitively felt and believed.


problems with pills and their packaging

10620568_695275277232322_5019161922618687253_n10659307_695275383898978_7830724082724100418_nFive items in my repeat prescription bag today, but they are never quite the same. I keep re-adjusting the medicine cabinets to accommodate the packages but just when I get everything fitting nicely in the pharmacy sends a different brand of pills for one of the items! This time it was the statins. The new boxes are an entirely different shape and size to my last lot. The first picture shows what I was expecting to receive, whilst the second one shows the difference between the expected item and what I actually received this time around. It’s rather inconvenient but it must be very confusing for very elderly patients or those in the early stages of dementia. I guess the pharmacy must just buy whatever brand is on the best offer!

Detergent difficulties

Some time ago I changed from using liquid detergents to gel. This was because lifting heavy containers of liquid and then needing to carefully pour into a small container with one hand was problematical for me. Also, only having one eye, my spatial awareness is not always very exact and liquids make a drippy mess when I judge the distances badly. The newer gel versions of the same detergents however are more easily managed, or so I thought until recently when I have discovered a different problem particular to them alone. All is wonderful when the container is new and full but once down to the last 20% or so suddenly it becomes impossibly difficult to squeeze the container hard enough and long enough to get enough gel out for a wash. I have had to resort to asking my husband’s help for the past few weeks in order to use up the contents of the two gel detergents in the picture, and even he has had to struggle, saying it needs the strength of a gorilla to get the last stuff out! I’m guessing it’s probably something that happens with all the various brands. Has anyone else experienced this? It’s a shame because otherwise I find the gels a much cleaner and easier alternative, but for the time being I’ve reverted to using liquid, at least until the pain and weakness in my hands reduces, if ever.



Bad hand days are here again


Experienced a long day of pain a couple of days ago so I dug out these little treasures. Their close-fitting warmth helped bring some relief. Wrist-warmer season is here again!

Apologies about the large lurid picture but this is my first attempt to post, with a picture, from my ipod, and I’m not sure how to edit to reduce the image size just now!

helpful holster

I heard on the news this morning that a young women aged twenty-five had died last night outside in the snow.  It is not yet clear whether she fell or was taken ill but one wonders if she was conscious whether she had a mobile phone with her to be able to summon help.

A few years ago during similar weather conditions one night one of our friends  was out walking his dog in some local woods when he slipped and broke his leg.  He was unable to raise the alarm by mobile  because there was no signal and had he not been able to slowly and painfully crawl out of the wood and to the nearest house he too would have succumbed to a cold death.

Because of my condition, falling is my greatest fear and I don’t set foot outside if there is a risk of slipping on ice.  I don’t go walking down our (very) long garden if I am home alone in case I fall.  Even then, I take a phone with me;  but this can be a problem sometimes if I don’t have a pocket to carry it in.

My mother in her later years had Aid Call which saved her life a couple of times.  That system, and others like it, require the wearing of a device around the neck or wrist which can easily be pressed to summon help, but such services usually cost money and may not be a sufficiently justified expense for some less at-risk people.  Having one’s mobile always to hand could be a really useful if slightly less reliable alternative.  To this end I have made a little holster to carry my mobile and wear around my neck  when I am home alone.  It’s knitted from scraps of leftover yarn, and I may make several to compliment different outfits.


I think I will also make a few when time permits and put them up for sale on my blog in case others are interested but unable to make their own.

one year on

A little over a year ago I decided to follow the advice given in a book as to how to treat my arthritis without drugs.  In this post I declare my intention of trying this practice for a full year as there are no quick fixes.  I am pleased to report that although I have not stuck tightly to all the aspects of the regime I have been fully consistent with many of them, and I have adapted others in the light of new information gleaned along the way.

An important point to note is that I was lucky enough to be able to try this experiment since I wasn’t really on any serious medication to have to give up.  In fact all my life I have done my best to avoid taking up offers of drugs so compared to many other people with Stills Disease or similar related conditions I have only taken relatively small or infrequent prescriptions of drugs such as cortisone, prednisolone, methotrexate and celebrex.  The one drug which I have relied on heavily through six decades is aspirin.  I count myself fortunate to some extent that the modern drugs now offered to patients just weren’t available during my younger years.  Nowadays current thinking and practice is to treat the onset of Stills Disease agressively with drugs to prevent joint damage.  I certainly have suffered joint damage, and in the end lost the sight in one eye on account of my Stills Disease, but apart from that I have been fortunate to have lived a relatively healthy and productive life into my sixties.  I was a schoolteacher (albeit part-time) for more than twenty years) and I have been blessed with a healthy son and two grandchildren.

When I was younger, a student facing my first major operation on my knee, I used to explain to people about the cause being my ‘arthritis’ and I used to always maintain, “at least it doesn’t kill you”.  Sadly I was wrong in this belief.  When I was growing up in the fifties and sixties I was aware that I’d had a diagnosis of Stills Disease as an infant and that the condition was related to Rheumatoid Arthritis but I wasn’t often or hardly aware much of the time of symptoms other than those that more related to osteo-arthritis.  It was all the same to me, in my mind I was just more susceptible to ‘wear-and-tear’ damage.

Only very recently as a result of interaction via the internet have I come to understand the full scope and awful potential of Stills Disease.  About a year ago I made a friend online via Stills Disease.  Her name was Laura and she wrote an erudite and highly informative blog about the Disease and the personal progress of her illness.   Earlier this month the terrible news of her death reached the Stills community and this awful sudden ending of such a young and beautiful life has shocked me to the core.   Hopefully her blog will stand in perpetuity as a useful source to others and a legacy to Laura.  A memorial site for her has been created here.

Laura had tried just about every drug available and yet they couldn’t save her!  I, on the other hand, have tried very few and yet I’ve lived to become a pensioner.  It does make me wonder whether they have got it wrong and more research should be done into less agressive forms of treatment, more natural therapies and diet, for example.  To me it makes more sense to nurture the body’s good cells to better help them resist the rogue destructive ones.

So I shall be sticking to my current diet/lifestyle in the hope of further or at least continuing improvement.  Today we went swimming.  The disabled changing facilities were in use so I had to manage on my own in the women’s changing room.  A year ago no way could I have managed this.   I do have a few concerns right now, one being swollen ankles.  These have occurred before, but usually I can get rid of them with better application to my diet and exercise.  Exercise is what I have been missing out on this last month, mainly due to the ongoing abysmal dark and wet weather.  I am unable to potter around in the garden because of the mud and fear of slipping, and the damp doesn’t help my old bones.  Visits to the swimming pool have been lacking due to other seasonal priorities, but are firmly back on the agenda for the new year.

I also have two more new ‘weapons’ in my  armoury against Stills, both oriental in essence.  I have been adopted as a recipient of long distance healing by a friend in Japan.  I am grateful for this and keep an open mind.  And on Thursday I am going for an initial session of the Chinese massage technique, Tuin Na.  This came about as a result of reading this page and me then finding a local practioner.  So I go forward into the New Year with thankfulness and optimism.