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a very rare wave of fear

24 May 2012

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afternoon light in our bedroom

I’ve spent too much time in bed this month for my liking. Ever since I started medication for my second eye condition Cystoid Macular Oedema, it appears to have aligned with an increase in health complications. We can’t be sure that it’s a contributor or solely responsible, but I want to try find out. After finding myself in bed for four days for the second time this month, in a lot of pain and unable to keep food in my body, I have reached frustration point. If I wasn’t so tired or sore I would have cried by now.

I think you all know me well enough by now that I am a very happy and positive person and I know how incredibly lucky I am. I am embracing life with all I can. Even the occasional flat day – I know it will end, so I accept it, rest and get up again. I’ve been contemplating all the suspects for my stomach problems which simply cannot go on like this, as I cannot lose the weight or afford malnourishment. I find myself at a potential crossroad of using drugs that do what they’re supposed to do in tempering the swelling in one of my eye conditions, but dealing with side effects that at times really affect the quality of my life. Going off them is the last option as the fear of opening myself to further eye conditions and irreversible complications is just too damn scary.

In that consideration, I felt a very very rare wave of fear come over me about the future of my blindness.

I’m still standing here (ok, so right now I’m lying with a heat pack on my back, but you get my sentiment) in a warrior pose ready to take this on. With thoughtful, analytical, systematic steps. With consideration of all outcomes. With doctor visits. And with the love and support of beautiful people. A friend who texts to see how I’m feeling. Another who shares all she can of her professional knowledge and wishes she could help more. A mother who wants to make it all go away in a second, and if love could do it, it would vanish. A husband who has walked our dog, heated my heat packs, kept me hydrated, rubbed my back, discussed action plans and been a nurturing angel.

Yeah, come on. Try and beat me. Challenges, schmallenges… it’s what I do. And get a little nervous, because I’m good at it. And I got back up.

Just let me have a little nap first, ok?

13 Responses
  1. May 24, 2012

    I admire your positivity :) I think you’re well equipped to deal with what life throws at you, although it’s perfectly fine to not be so strong all the time.

    Some friends of mine have had success with elimination diets (with quite different issues though) – is that something you could look into? Sorry I know you’re probably getting lots of advice from different sources already and are probably over it! Feel free to ignore :)

  2. May 25, 2012

    I’m sorry you are having such a difficult time and hope you are able to resolve the problems with the new medication, I do feel for you.
    Sarah x

  3. May 25, 2012

    I’m so sorry to hear you haven’t been well lovely lady. I am sending love, many hugs, laughter and good thoughts your way and hope that you have that action plan in place to give your body a rest but ensure that your eye condition is looked after as best it can be without further complications.

    P xo

  4. May 25, 2012

    Oh lovely I have been thinking of you! Hoping every day that the stomach pains go away soon.

    Don’t be afraid of the future; the future will be what it is. You can conquer anything, and I know that you will deal with the future as you have with the past – with courage, grace and the support of everyone who loves you x

  5. May 25, 2012

    You are allowed to have that little wave of fear – you are dealing with a scary situation most people would never even dream of dealing with. You are one classy lady. I admire you so much and am inspired all the time by your positivity. If I can help in any way at all, let me know. I am here for you. For now I am sending you a great big hug XXXXX

  6. May 27, 2012

    oh, so sorry to hear of your struggles with medications…it is such a balancing act between the helpfulness and side effects. Thank you for sharing so I can be sending your warm, healing thoughts every day from minnesota. ox

  7. May 28, 2012

    You are very brave. Your positivity is incredible. Wish you all the best

  8. May 29, 2012

    Sorry to hear about your troubles. Stay brave and positive and hope the pain eases soon.

  9. May 29, 2012

    Oh no, I didn’t know that you were having complications from your medication! How are you feeling today?

    I know how you feel (obviously on a much smaller scale), I have endometriosis and when I was in high school I was put on a medication to stop my periods (and therefore my pain) but I put on 20kg in two months and I struggled with wanting to stop my pain and not wanting to put on any more weight and risk becoming very unhealthy with more weight gain. It’s a hard decision to make. Have you spoken with your specialist? Is there something else you could take that could counteract the side effects? Naturopathy? Homeopathy? Acupuncture?

    Thinking of you, lovely lady.

    x Jasmine

  10. May 30, 2012

    I’m so sorry to hear this. I have got your back! I know you can do this and yes it might be very challenging but you are right, you are very blessed. Just look at that dog and man of yours! That support network will keep you standing.
    Thinking of you my lovely, keep talking and communicating. xx

  11. May 30, 2012

    My beautiful friend,
    I am so sorry and saddened to hear about your recent struggles with your newest meds. I HATE meds! I understand that they are necessary at times, but side effects are NO FUN! I would stick it out a bit longer, but definitely not forever if it’s affecting your life in such a way. You ARE a positive and strong woman. I think you could handle anything that gets in your way. You are an amazing person and I see only good in your future. Hang in there and stay strong. Love, Lea ( :

  12. May 30, 2012

    Lovely, so sorry to hear you’ve been having a tough time of it!
    Keep up those brave spirits of yours and I really hope things improve for you very soon. You’re an inspiration to me and many others with your outlook on life and I’m thinking of you and sending you a huge hug! xx

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