Saturday, 2 June 2012

A pain in the neck, challenges and I'm shrinking...

I thought I would write another instalment about my AS journey.

Since I posted my previous blog I’ve not had a great time with this condition. My back is constantly stiff, my neck feels like it is beginning to fuse and the fatigue has at times been chronic.

I have found my immune system is becoming weaker and I seem to pick up more bugs and illnesses now. I find myself thinking if someone coughs near me that I may be picking something up. This has taken a lot out of me and it feels like all the good progress I made since September last year has been un-done.

My work schedule has been crazy and this has not helped my condition and/or my immune system with the additional hours I have worked. I took some annual leave as I was on the verge of exhaustion and it allowed me take a step back and look at my lifestyle and make some changes.

It also became apparent how worn out I was when I seemed to need coffee to get me through the days. In 10 days I had filled 4 loyalty cards from a certain high street coffee shop (9 stamps are on each card) and that scared me (both health wise and financially). With this in mind I’ve given up coffee and have had 1 cup of coffee in 60 days now, instead of the over 38 cups I had in 10 days.

My sleep pattern did seem to get better; equally the lifestyle changes I made also helped however this could have just been physiological brought on by stopping drinking coffee.

I did find myself getting into a very vicious cycle where I was too tired to exercise then everything started to stiffen up and that in turn made exercising difficult. I’ve taken the metaphorical ‘bull by the horns’ and have forced myself to set myself challenges with the first being this month. I’m going to cycle between London and Brighton which is a 54 mile (87 kilometres) journey.

I know I will be in a lot of discomfort after doing this however I need to keep myself moving, once that is done I am going to start planning to do something for my next challenge and believe it will be climbing 3 of the UK’s biggest peaks over 3 days. I’m scared yet excited about planning and training for this.

One thing which I do not like is I seem to have shrunk… I used be the average height for a UK male 5’10” (178 centimetres) and I am now 5’9” (175 centimetres). I am gutted about this but realistically I think I had lost an inch long before this however I had not checked.

After finally getting to see my Rheumatologist 4 months after I was supposed to, I got to see my x-rays and blood test result from last year which showed signs of fusing around my pelvis and that the HLA-B27 blood test came back as positive. I’m in a bittersweet mood as I’m glad it has been finally confirmed however also I’m slightly gutted it has been confirmed also.

The consultant also agreed with me that it was time for me to start taking medication as I’ve deteriorated in the past few months and have begun taking Naprosyn with the possibility of having to move onto either Humira or Enbrel in the future which I’m slightly worried about as they are injections and not oral tablets – however if it is something I need to do I have just got to get on with it and do it.

One thing which had been troubling me would be if I wanted children in the future and what life would they have should I pass on this condition to them. It was good to speak to the consultant about this and even though there is a 50/50 chance I will pass on the HLA-B27 gene there is a possibility they would not get it, kind of like playing Black or Red on the roulette table – I’m betting on Black hopefully Red does not come in.

My initial thoughts of accepting this condition are still there however the ‘honeymoon’ period is long gone now and I’m fully aware this condition will not go away so I need to be more pro-active in managing it better than I have been doing.

It is time to bring on the challenges and I will not allow this condition to take over my life however I’ve accepted it being part of it.

Thank you for reading this and hopefully by the time I next post I will not have shrunk anymore.



  1. Just got your follower request on Twitter! Glad to commiserate & educate with another ASer! I have a blog(haven't posted in a while!), about my journey with AS. As you are worried about passing on the gene for AS, I already have with my 16 yo being diagnosed this past spring. Don't think I've shrunk, but as you, I become too fatigued to exercise. Do you take your calcium EVERYDAY?(osteoporosis) I HATE all the pills I swallow, but I hate it even more if I forget!(pain). I no longer work, I was an RN, and I miss it very much. It's great you can still work! Keep up the good fight and remember not to slouch! =D

  2. Hi, thanks for the comment.

    I'm trying to write my next installment however opted to go out in the sunshine this weekend.

    I don't take calcium supp's but have recently started taking Vitamin D supp's after attending a very informative talk from a Rheumy who has a keen interest in AS (will cover some of his points in my next blog).

    I've also done more research on passing on the gene and have decided when the time is right to go for it and be aware of a potential issue in the future (equally everything could be fine!)

    One thing I've realised is not everyone suffers the same and AS just cannot be categorised you'll have this and this, there is also you may suffer from that and something else as well.

    Being positive about this condition is what gets me through the bad days.

    Fingers crossed you have some good days :)