Tuesday, 21 August 2012

Increasing my education, long mirrors and broken sleep

So since my last update the good news is I’ve not shrunk any more, my pain in the neck was due to a fan I have on my desk sending cold air at my neck (proper school boy error there!).  Now the neck pain has reduced dramatically since realising my error…

The exercise challenges are going well and I completed the London to Brighton bike ride back in June with hardly any aches and pains – even managed to cycle up a 531 ft hill (which has a 12% gradient in places) without stopping which usually beats many a good man (or woman). 

I’m still cycling as much as I can and have started to plan to do other things, hill walking will be my next challenge next month up in the Peak District.  Even if I ache from doing it I’m a firm believer that it is worth it as I refuse to get back into that vicious circle of needing to exercise but not being able to do it due to pain.

In my last post I mentioned I had started to take Naproxen which did not seem to help much so I’ve now been put on Diclofenac which seems to be ok however it is still too soon to say ‘yes, this is working for me’.  I’ve got my next Rheumatologist appointment in 2 months time so I guess I’ll find out then.

Recently I attended a presentation from a Rheumatologist who has an interest in AS, to which I found very useful and informative.  He talked about a few subjects including spine trauma and Vitamin D deficiencies which I’ll go a little more into detail about below (I am aware some of you may already know this however I’m guessing like me some of you may not!)

The first thing he talked about was spine trauma and should any AS sufferer encounter any spine trauma (falling over, slipping of a step, car accident etc) to request to have a CT scan instead of an x-ray. Unfortunately the x-ray does not show enough to make a valid diagnosis of spinal issues and more often an x-ray does not show anything is wrong which could possibly cause a wrong or no diagnosis. 
It was also really refreshing to hear that my local hospital trust in Brighton (UK) has started to do CT scans instead of x-rays for spinal trauma in their A&E department.

He also talked about bone density issues. Basically people suffering from a vitamin D deficiency could be prone to fractures in their bones; this risk is higher the further you are away from the Equator (suppose it makes sense if you’re further away from the sun!)

With this in mind I’ve started to add vitamin D supplements to my diet.  Granted the supplements won’t even give you 2 sevenths of what you can get directly from sunlight however it is better than nothing I suppose.

Whilst he was talking about brittle bones issues, I started to think of a way of describing this to non-AS sufferers. I said the following to a few people I know ‘imagine dropping two items from a metre to the ground, the first being a bath sponge and the second being a piece of dry spaghetti, what happens?’ 

Most people answered the sponge will cushion the impact whereas the piece of spaghetti will fracture and/or break on impact.  Then when I said ‘imagine that piece of spaghetti is now a spinal cord’ they looked horrified.

He also said that it is very worthwhile to mention the following when attending an A&E Department after a fall.  ‘I suffer from Ankylosing Spondylitis and have a higher risk of bone fractures than other people.  Please can you do a CT scan instead of an x-ray?’   Equally it may also worthwhile getting family and friends to know this if for any reason you’re not able to say this yourself (I’ve let people know this).

I found this talk very interesting and also took a lot away from it to help my own management of this condition especially as I’m still learning about it, hopefully what I've written may be of some use to you too.  This presentation was arranged by the local NASS branch I attend.

One thing I’ve noticed is not everyone suffers the same issues and symptoms, for some people their way of life is dramatically reduced whereas other people can do triathlons, equally where you’re geographically located can help or hinder the treatment received which saddens me. 

Another big factor I seem to come across from the forums and posts I see, is a lot of the time the medical practitioners do not have the knowledge to always correctly diagnose AS or even worse do not want to diagnose AS (especially with women) which also does sadden me and hopefully this can change.

I did read one article about some UK doctor’s being educated about AS at their conferences which is can only be a good thing, hopefully this will increase awareness of the condition (my fingers are crossed that this happens).

One thing which I’ve worked out since having AS is I don’t like looking into long mirrors! Each time I look into a long mirror I see a person with a body shape that resembles a question mark looking back at me, I know that is how my spine makes me look now however it still annoys me that I see it each time. 

There is a slight positive though as it does make me check my posture frequently and I try to sit and stand better, even though I seem to subconsciously revert to slouching without even realising which I’m trying really hard to change but the phrase ‘you cannot teach an old dog new tricks’ comes to mind there. 

There is one thing which really kicks me on a daily basis and that is my broken sleep pattern, every time I roll over I wake up, if I’ve managed 3 hours of uninterrupted sleep a night I’ve done well.  When my alarm goes off in the morning I find myself hitting snooze far too many times, and feel even more tired. 

I’ve decided that my body clock is now running on Eastern Time which would be great if I was on the east coast of America however it is not so good being in the UK.  I’m now trying to get into the habit of when I first wake up (usually around 5am) to get up and do something energetic, possibly 5 miles of cycling each morning to try and reset my body clock time back to GMT.  Only time will tell if that makes any difference.

Finally I’m currently researching a few anti-inflammatory diets and have begun to try a new approach to cooking rather than my usual ‘it has to be a dead animal’ approach.  I’ve got a few ideas and I’m starting to make up my own recipes using some of the suggested ingredients however I am already missing beef.  In my next update I’ll mention how it is going and possibly some of the recipes I’m using.

Thank you for reading and for anyone who has AS I hope you have more good days than bad ones.


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