New on this forum - thoughts about how to stay feeling well

JujuAS
JujuAS Member Posts: 2
edited 24. Jun 2019, 09:31 in Say hello
Hi,
I've had AS for over 30 years, but it took nearly as long to diagnose it. Also some gut problems, which led to a big chunk of colon being removed 15 years ago, but still no correct diagnosis. Oh yes, and brittle bones as well.
Diagnosis finally in 2015. Responding well to Biologicals and MTX, but I don't think the medication is the whole story. Looking after my health takes up a lot of time.
I do a lot of sport as it keeps me flexible, and also have been trying to adapt my diet, including interval-fasting of between 12-16 hours. It seems to help, but it's always hard to tell. Anybody else tried?
Getting enough sleep is also important, although that's sometimes difficult, especially in summer.
Juju

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hello and welcome JujuAS to the Versus Arthritis Community Forum

    So sorry to read of all lengths of time finding diagnosis with your health, you have certainly been dealing with it for quite some years. It's also good and encouraging to read how you are dealing with it, you sound quite positive in your approach to your health. People deal with their arthritis issues in different ways and you have come to the right place, our forum users are extremely helpful and offer some good experienced advice.

    Please feel free to call Versus Arthritis Helplines the telephone number is at the head of the page.

    Enjoy the forum

    John
  • stickywicket
    stickywicket Member Posts: 26,253
    edited 30. Nov -1, 00:00
    Hi and welcome from me, too. I have RA and OA. The RA was a clear cut diagnosis but many autoimmune forms of arthritis are far from easy to diagnose especially the sero-negative ones such as AS. I'm pleased you now have your diagnosis and are responding well to the meth and biologics.

    Are the 'gut problems' related to the arthritis? I know Crohns is autoimmune but they can also arise out of the blue, I, too, had a hemicolectomy a couple of years ago but that was just a twisted bowel. Nothing to do with my arthritis.

    How does looking after your health take up a lot of time, if it's not an impertinent question? I have to do exercises to keep my joints in....well....not exactly 'good nick' :lol: but the best I can manage. I have, over the initial years, tried loads of stupid diets and I'm now firmly with the rheumatology experts and Versus Arthritis that all that matters is that it's a sensible, broadly Mediterranean-type one. Of course, if you have some gut issues, more might be needed. My son has a gluten problem but is fine as long as he doesn't eat any.

    Getting a good night's sleep is, indeed, important. Children helped to ensure it when they were young :wink: Now that all my joints are rubbish and housework takes so much more time and effort, I usually sleep well, though the temptingly delicious cup of Italian coffee I had in the restaurant on Saturday evening had me lying in bed wide awake.

    As for your header – I guess it all depends on your definition of 'feeling well'. My 'well' is vastly different from my golfing/gardening/walking husband's 'well' and even further removed from the 'well' of my superfit grandsons. But, as long as I'm not sneezing or have a sore throat or problems with my hiatus hernia or GORD, I feel pretty good. I do always ensure I get the annual flu jab. I use antibac gel a lot (always in hospitals or at the doc's and I keep some in the car) and I make it clear to family and friends that, much as I love them, I don't want to see them if they have a cold.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I was born with auto-immune nonsense so the arthritis was more of the same. I began PsA back in 1997 when I was 37 but wasn't accurately diagnosed until 2006: the diagnosis changed nothing in terms of medication. OA was diagnosed in 2011 and fibromyalgia just after.

    I have never known what being or feeling well is like because there was always something affecting how I could live my life. It's been compromised and curtailed in many ways for a long as I can remember but I never have regarded myself as being ill. I had conditions which were greatly improved by the invention of inhalers and steroid creams and now an incurable disease but the meds help to control it's excesses. That's as good as it gets.

    I don't have much energy but that's always been the case. Those who only know good health would be completely unable to live my life because they have never been truly ill, only had the usual stuff that clears up and goes away. Likewise I wouldn't be able to live theirs. Being well is not also what we eat and do, it is a state of mind. I am more than my disease, it does not define me and never will. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben