Friday, 13 August 2010

Thanks for coming

An update on the malnutrition situation: it is no more. I went to see the (less than friendly) dietician yesterday for a follow up appointment and after weighing me she pretty much showed me the door. What a waste of my time. I was expecting to have some in depth talk about how to live a healthier lifestyle or what foods to avoid/include in my diet so I never have to suffer with dramatic weight loss again. But as I expected the questions I asked were given direct, snappy answers of “just keep up what you’re doing”. Great. Thanks. I neglected to mention that I am not really doing anything differently. I have of course stopped drinking the calorific supplements as it can only lead me down the path to 60 stone.
I do eat well, don’t get me wrong. I have no irrational fears of fruit and vegetables but I can’t help feeling anxious about continuing to put on weight. I am happy with my health at present and my weight has had a massive impact on increasing my energy levels and making me feel “normal” again. But I have always had slight issues with my weight, even before my RA. I suppose it’s some sort of anxiety that I will wake up one day obese. I have control issues I think. I hate the fact I cannot control certain things in my life, like my RA, the weather, or the lottery numbers. However, not eating is something I can control. Deep down I know it’s ridiculous. I am a healthy weight for my body type but I have started to notice some old habits coming back from my teens.
I suffered with bulimia for a short while in my mid teens. I put that down to stress and possibly seeking attention at the time, not that I really told anyone about it apart from my mum. Ever since then I have been cautious of my weight, watching what I eat more intensely at certain periods in my life. I know everyone has concerns about bits of their body they are not impressed with but I wish I could get over this ridiculous notion that I need to be skinny to look good. Because, lets face it, there are far more important things to worry about and my health is a priority. I think it has a lot to do with being more inactive than “normal” people. I cannot exercise as much as id like because I fear a flare up so therefore I have to watch what I eat more. Get over yourself you must be thinking, well you and me both.
Don’t worry, I will never again have an eating disorder as such, I know how bad it is for you. I think I just need something else to concentrate on with my free time. Maybe ill take up bird watching?… on second thoughts no.


  1. hope all us dietitians arnt that bad! xx

  2. Sending lots of encouragement for the healthy diet thing. I have found sticking with the GI principles a good move. When I get on the scales it says "One at a time please!" Like you, I have found that staying alive and being able to function more important that a few kilos here and there- it is very easy to get obsessive and shallow, but sadly after years of steroids an immobility I have got very over weight and it is tough. How about writing more for a hobby- I love your blog!

  3. Did you read about the trial with Vit B6 on ARUK. A small group who were given 100mg daily had significantly reduced inflammation markers than the placebo group after 12 weeks.It appears that all RA sufferers are deficient in this vitamin. My RA consultant okayed me to take this with my MTX and HCQ but said not to jump to too many conclusions as it was only a small trial. I found this product cheap to buy and started to supplement with it.Here's hoping.

  4. I omitted to add that B6 is also a mild diuretic and helps reduce water retention.For those like me who can't take diuretics because of interaction with Methotrexate, it makes sense to keep your B6 levels normal.I split my 100mg tablet into two as B6 is water soluble and the body gets rid of it in eight hours so I take half at night and half in the morning.So far Methotrexate and hydroxychloroquine plus folic acid has all but put me in remission and given me my life back without any side effects. B6 may just be the icing on the cake to get my ESR to stay below 20 and CRP down to zero.I still get some swelling and tightness in the ankles and legs in the evening but this has gone by morning and is not RA related anyway according to my rheumatologist. On Monday we did a 5 mile walk on Exmoor taking in some big hills and although I payed for it on Tuesday it was a huge leap forward.I hope this encourages you all out there to keep trying and find WHAT IS RIGHT FOR YOU.

  5. It's nice to see such a gutsy young lady taking such a positive view on life and despite your tender age showing such maturity.I'm very sure that in your lifetime there will be a one off switch for this auto-immune disease and other related ones. Even as we speak they are doing exciting trials (phase 3) with Otelixizumab to permanently switch off type one diabetes with just a single treatment. This is also an auto immune disease only of the pancreas, and they are in phase 1 trials for RA now. Who knows when the breakthough will come or what will be available in ten short years.So keep your pecker up and stay chirpy.Regards to all you fellow sufferers. Ben Corde.