I am ashamed to ask this but hey ho here we go.......It has taken 20 years to be diagnosed (last month). I thought a diagnosis would be a relief and of course it is, it really is. My GP is good, my rheumatologist brilliant - he is also arranging an appointment for me at St Thomas'. But if I think about all this I do feel a bit depressed. I suppose it has been a bit of a whirl wind month, memories of the babes I lost makes it hard too, I guess. And the warfarin learning path is a lot to take in. Plus remembering the bad medics who made me feel I was a bonkers hypochondriac makes me a bit anxious. Does this sound normal? lol


15 Replies

  • Hi Lynn of course it is normal, heavens above it IS a lot to take in and now it is all starting to a bit. BUT you must try and think of the positives, you have got a dx which means you can treat it appropriately. Many people struggle to get and do that. You can now start to plan and control your life, and believe me control is a big part of acceptance. You will go through a sort of grieving process from the life you wanted and expected to the life you now must have. It may be that these might not be terribly different it depends on if you want to go sky diving :-D but you know what I mean. But I have learnt you have to give yourself time to adapt, don't run before you can walk and things will fit into place in time.

    And of course the very best thing of all is that you have us to contend with... Said with grin on face.... We are not going to let you off too lightly!

    So don't be too hard on yourself and give it some time. You will settle down in time and not feel so anxious about things. XX

  • Bless you, bless you :)

    So maybe I am not too bonkers after all :) :) :)


  • Hi there, well done on finally getting diagnosis, this is not that unusual, and the relief of getting there has probably given you time to draw breath... and instead of the fight, time to reflect.. and of course you will have relived some not so nice memories, as you limped towards the finish line. All perfectly normal as far as i am concerned.. the only way is up. I hope you find support on here. Mary F x

  • Thanks Mary - very much appreciated. I have already found this site to be an amazing support.

    Hopefully I will be able to help others when I have got my head round it!

    Lynn x

  • Hello Lynn

    Certainly good to know that you have finally got a proper dianosis after all these years.

    Yes, your reaction to it all is perfectly normal.

    It will take a while to find what INR renage makes you feel best at and I hope that your GP will work with yo to achieve this.

    Please set your location on your profile as this helps others, near you, to get in touch and helps us to help you also.

    Best wishes and good luck.


  • Thanks Dave - I am in staffordshire - will go and have a go at a profile :)I logged in as "stillwaiting" and what do you know I was diagnosed the follwoing week! So my name is a bit out now too!


  • Ok Lynn, I'm gald you have been Dx.


  • It's such a relief to get diagnosed, but when you think how many times you have had to fight along the way to get the diagnosis, you are bound to feel a bit depressed.

    My fight was only 4 years, yours was 20, so you have had the fight as a huge part of your life for so long. When I think back to how many humiliating appointments I sat through, feeling terribly ill, confused, and downright embarrassed as I was told it was to do with my age/weight/sex/lifestyle or anything else they could think of rather than APS, I still cringe now, and I got my diagnosis over a year ago now.

    I have adjusted to life now, with my disabilities and the loss of driving and working, and me and my husband now call this our 'New Normal'.....everything is the same as it was in our lives, but just a bit different! Even my battle with words has developed into a family game of charades, with us all acting out the possible answer!!

    Welcome to the new normal, and by the way, I think a bit bonkers is good and ok and keeps you cheerful!!

    Larraine x

  • Thanks Larraine - I am still driving - but not if I am having a bad day, of course. I had to stop working about 7 years ago - though I still do a bit of writing for magazines from home. So I guess I have had a bit of time to get used to all this :)

    Done voluntary work this afternoon and now I feel like I've been run over by a bus! Time for me feet up before I throw a salad together :)


  • A half or more of the stress is just getting to the right doctor and one on your team. But first it seems, you must walk through the jungle to get there.

  • Very very true. But having walked the jungle & found the right drs on my team I expected to feel better than I do. I think I am maybe exhausted after 20 years of jungle walking :)


  • Am so pleased that you finally have your diagnosis, it is a long and winding road for many (without even a scenic route to enjoy) so it is perfectly normal for you to feel this way. As everyone else has said, hopefully you can find support not only from good doctors who are fighting your corner but on here too from friends who know and understand exactly what you're going through.

    Are you able to get to the Patient Day next week? *hugs*

  • Hello Lissy - yes my husband & I are going to the patient day - my consultant suggested it to meet follk with the same condition and has written a list of stuff he wants me to listen out for when the speakers do their bit and then report back to him - lol :)

    Thanks for replying :)

    Lynn x

  • Hi Lynn, only 2 years - wow you are lucky! I have been like this all since age 26 - now 65 - and only got diagnosed in 2001. Joking apart you are with all the right people her who can help and support you. I only found this site a short while ago but already I feel as though I am part of a very knowledg able and caring family, better than a family maybe because they are suffering in the same way they actually UNDERSTAND us and what we go through day to day. I will be at the patient's day next week with my son so hoping to meet up with others. Not sure how many will be in wheelchairs but I have a bit black power chair, so if you see me please come over and say hi


  • Sorry meant 20 years???? brain not in gear again x

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