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Archive for December, 2011

In order that I might appreciate any future improvements I need to log a few baselines:

weight
Currently I weigh around 10 stone.  A beneficial side effect if I manage to stick to this new lifestyle is that I should also lose some weight.  This would be a good thing in itself since I could do to lose around 1 stone.

medication
Since coming off methotrexate ??? ago and having problems with discomfort in my throat, which was diagnosed as Globus Hystericus, I have endeavoured to get myself off as much medication as possible.  It would be foolish to stop taking the beta blockers and statins but nothing else is essential.  I even think I shall ask for more detail about my statin bloodtest results since they never actually tell me the levels just that everything is ok.  Maybe with my dietary changes statins are not as necessary now as they were when my angina was first diagnosed.  Cutting them out could potentially improve my energy levels which would be a bonus worth having.  For quite some time now I have though been treating myself to the recommended doses of Omega 3, garlic, ginko and Q10, and now that sunlight are so diminished, also Vitamin D.

When things started to get really bad in October I broke out some (still within date) Celebrex which I still had from previous prescriptions and took it for a month in the hope that it might help offset the flare-up.  I don’t think it did make much if any difference.  When I was about twelve (in the late 50s) my GP advised me to take aspirin if I felt the need.  He told me not to be a martyr and suffer but to use aspirin sensibly and to this day aspirin is my drug of choice to help me cope with inflammation and pain.  But nowadays doctors get mightily upset at the mention or use of aspirin with its supposed gastric side effects.  I’ve never been aware that it has caused me any problems at all ever but of course that doesn’t mean that there might not be hidden damage that has resulted from my use over the years. 

When my angina was diagnosed that consultant said to come off celebrex.  When I discussed this later with my rheumatologist he reckoned it was ok to keep taking them if I found them helpful.  When I said I thought aspirin worked better for me he said celebrex was better but that on no account to take both together.  Hence, this October I tried celebrex as a first option.  When the month was up I was going to request a further prescription but when I re-read the drug information leaflet I decided not to bother and revert back to aspirin if I had to have something, which I did several times in the month preceding my ‘new beginning.  I also very nearly got pushed to the pain-point where I cracked open some Tramadol which I was prescribed for my frozen shoulder the other year.  I was very wary of taking this then and am only likely to actually try it in a worst case scenario situation.  I don’t like the idea of taking painkillers on a regular basis, partly since in my experience the ones I’ve tried are not very effective and merely produce unpleasant side effects.  Also if medication is masking pain then how does one know when it abates naturally?   Since I started this new lifestyle I have taken no painkillers yet but I have taken aspirin recently a few times.  If I have to get up and out before midday I panic as to how I might be able to cope and on such occasions I take aspirin after breakfast.  I would also take aspirin during the night if pain was keeping me from sleeping. 

exercise
In recent years I have tried to swim as often as possible but there are only, even in the best of times, a few opportunities where time and conditions allow.  And now that I am much less mobile I am nervous to attend even our local gym pool.  The changing room is small and can be problematic for me let alone now that I can barely dress myself at home.  And the water and room temperatures although better than public baths are not reliably warm enough for when one is feeling stiff and uncomfortable.  Other than swimming my only exercise tends to be time spent outdoors pottering about in the garden.  This gives me great pleasure but is also quite a chore if the weather is not clement.  So last time I had an appointment at the orthopaedic clinic I expressed a desire for some physiotherapy help to tackle the pain due to my stiffening back and other joints.  To date I have had two appointments and have been shown six simple exercises, three each for my back and shoulders/arms.  I try to do these each day but don’t always manage to attempt them every day.  In the new year I am hoping to start a short course of hydrotherapy sessions which I am looking forward to very much.

current difficulties or can’t dos.
Getting dressed and undressed  are difficult slow and painful procedures.  Putting socks on (and to a lesser extent, off), brushing my hair, washing my hair,  are things which I often need help with.  Getting out of bed is a time consuming business and requires a complicated routine involving the use of an essential cushion.  I can pull open various drawers around the house but am unable to push them slosed again.  Every time I stand after being seated for more than a couple of minutes I struggle to bear my own weight for up to a minute before I can begin to move.  To help with the worst instances of this I now make use of a four-footed walking stick which provides more reassuring support until I ‘get going’.

So this is a summary of my current state of being.  Hopefully things can only get better……  !

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One of the key elements in my new lifestyle choice to try and tackle my Stills Disease requires that I drink cider vinegar three times a day.  The first time was rather daunting but it turned out to be not half as bad as anticipated.  It IS mixed with honey which makes it quite palatable and having now had seven doses I’ve got to quite like it!  The key to making it tolerable I think is to surround it where possible with something to eat since for the first day and a bit I was constantly aware in my tummy that I HAD been drinking vinegar and this feeling was not very pleasant. 

So now my plan is to drink one dose first thing in the morning followed by toast and marmite.  The second dose follows lunch instead of my instant coffee, and the third one is round about 5pm instead of another instant coffee.  Today this one was well ~integrated~ with a good portion of Christmas pudding and rum sauce :)

I’m not going to explain WHY taking this is supposedly beneficial, or any of the other practises I will go on to mention.  I don’t want to get bogged down in explaining or trying to defend the therapy, people must read the book and come to their own assessment of what is prescribed.  I shall merely keep a record of how much or otherwise I am succeeding in following the advice given and how I am feeling with regards to pain and mobility etc.

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new beginnings

My condition has been gradually deteriorating in recent months, to the point that pain and disability have now taken over my world. 

First there was the worsening pain in one hip/buttock which made it impossible for me to stand/bear weight for a minute or two after being seated for any length of time.  This has developed to the point that now I cannot bend sufficiently to pick up anything from the ground or reach my own feet to get dressed until almost midday.  I can scarcely get in and out of bed in less than five minutes negotiating the process.  Fortunately I now have had a couple of appointments with a physio who has given me a few simple exercises which will hopefully help improve my current situation.  He has also recommended me for a short course of hydrotherapy in the new year to which I am greatly looking forward. 

But the disease is now far more widespread than when I requested physio for these issues related to  my back.  I began to have pain in my left should a few weeks ago.  I was worried that it was a ‘new’ frozen shoulder!  I experienced much pain and disability two or three years ago with what turned out to be a frozen right shoulder.  Fortunately my shoulder joint returned to apparent normality over the course of time (the classic Frozen Shoulder, taking 18 months from start to finish).  And now here it all seemed to be starting again! 

But then the pain widened to encompass both shoulders, and arms, and to some extent my fingers, which have sore points near the knuckles.  So here I am, a complete and hurting wreck.  What to do?

As luck would have it I noticed a book for sale via one of the online mail order catalogues.  I was buying microwaveable heat pads for my shoulders at the time when I spotted it, “Treating Arthritis: The Drug Free Way.

http://www.amazon.co.uk/dp/1847090052/ref=cm_sw_r_fa_asp_gfFqC.0512WKA

Now I am old enough to have heard of this type of therapy before, indeed I remember trying something along similar lines in the late sixties.  And I have always believed that nutrition and diet are key to understanding and coping with the disease so, given the good reviews, I purchased the book to see if it might offer me a new way forward.  After a quick read I decided to purchase the required nutrients and follow the advice, hopefully for at least a year, to see if I can improve my situation.  Giving up certain foods will be problematical but I figure that even if I can achieve only partly the suggested diet then my painful condition might improve a little which would make a vast difference to my daily life.

So, despite this blog being created primarily to offer practical help in overcoming daily problems, it will now play host to a record of my progress over the next few months.  Normally I do not like to share with people the detail of all my various aches and pains but for the purpose of testing this therapy I will need to say how bad things are at the outset so that hopefully, eventually, I can describe any improvements. 

Now I must leave the computer and try and stand up and get myself downstairs for lunch.  While I am sitting here writing I can briefly forget the pain but moving will now take all my concentration and effort.  Hopefully I will be back and writing the first instalment of my new treatment plan going into action very soon.

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