Trapped with anxiety

31 May

I would describe myself as a fairly calm, relaxed and laid back kind of person. Batten Disease has taken this away from me.

I may not always outwardly show it but I am pretty much constantly in a state of mild panic. This is heightened on days like today when Tilda shows signs of being unwell. We started the day with an increase in seizures. Then a slight fever and then some vomiting. The scariest one was when she vomited in her sleep, lying on her back. It was only that I was there to roll her over that potentially averted disaster. I don’t know why she had a fever. I don’t know why she has started vomiting and I don’t know what has increased her seizures. I don’t know at what point my mild panic should turn into full blown panic. I don’t bloody know anything, and neither does anyone else.

We wait. As usual. Wait to see what happens next. And we deal with whatever comes our way. It is all you can do. And just hope for some smiles along the way.

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19 Responses to “Trapped with anxiety”

  1. Natalie May 31, 2012 at 10:03 pm #

    Batten’s Disease hasn’t stolen your beautiful smile or the warmth and love your exude.
    Take care

    • teamtilda June 1, 2012 at 4:03 pm #

      Thank you lovely Nat. Smiles are back today, just take the occasional battering! When do you move??? Must see you before that. xox

  2. Jac May 31, 2012 at 10:14 pm #

    Hugs for you, beautiful brave girl. You are doing a fantastic job looking after your gorgeous girl.

    xx

    • teamtilda June 1, 2012 at 4:13 pm #

      Thanks love, definitely don’t feel brave a lot of the time but everyone’s kindness and good wishes help enormously. Xoxo

  3. cally berryman June 1, 2012 at 7:02 am #

    I can only imagien how horrible it must be. I wish I knew how to make it better.
    Sending you and Tilda warm hugs. And much love. xx

    • teamtilda June 1, 2012 at 4:04 pm #

      Thank you lovely Cally!! I can’t wait to see your smiling face back at work. I hope you are doing well and sending you much love. Today is a better day. Xoxo

  4. Irene Davey June 1, 2012 at 8:03 am #

    Hugs OOOO

    • teamtilda June 1, 2012 at 4:14 pm #

      Back at you lovely lady. So nice to see you today, I usually miss out! Xoxo

  5. Juliet June 1, 2012 at 9:44 am #

    All my love and fingers crossed that Tilda is soon back to smiling.

    • teamtilda June 1, 2012 at 4:10 pm #

      Yep, back to smiling today although school reports that she was not quite her shining best. I’ll take the smiles though! Much love. Xoxox

  6. jackie June 1, 2012 at 12:28 pm #

    Hugs to you all, wish there was something to say to make you feel better. Thinking of you all as always x

    • teamtilda June 1, 2012 at 4:11 pm #

      Thanks love. Your thoughts and well wishes definitely make things better. Hugely. Today is a better day. Xoxoox

  7. Jo June 1, 2012 at 3:41 pm #

    Sending you lots of love. You are managing so much and doing so well. You guys are negotiating so many unknowns I can really appreciate you must feel anxious. Know though that you are an amazing lady Laura, and a super mum. Get well soon Matilda Xxx

    • teamtilda June 1, 2012 at 4:14 pm #

      Thanks lovely. A better day today. Let us please catch up very soon. I need a Johnathan fix! Much love. Xoxo

  8. Daryl June 1, 2012 at 5:51 pm #

    Batten Disease has certainly cruelly stolen much from you Laura but it can NEVER take from you the realities of your journey with a Battens child…..your amazing parenting, your devotion and resilience , your determination and courage and all the other special qualities with which you confront this most insidious of diseases.

    Could Tilda have one of the many viruses that are floating around. Perhaps it might account for the increase in seizures ? The waiting to see is so tough…..for all your sakes I hope it gets sorted very soon.

    Thinking of you.

    • teamtilda June 2, 2012 at 5:32 pm #

      Thank you Daryl. I think you might be right, it was a little virus or bug. Thankfully it hasn’t seemed to stay the distance and we have a smiling Tilda back. xoxoxo

  9. Sue Batagol June 1, 2012 at 9:47 pm #

    Laura no one can really understand what you must all be going through unless that person has been where you are now. This I do not wish on anyone. Not knowing what is going on must be unbearable and the dangers that are lurking even worse. All I can say is that my thoughts are with you and your family.
    Sue Batagol

    • teamtilda June 2, 2012 at 5:34 pm #

      Thank you Sue – definitely something I would not wish on my worst enemy but it has opened my eyes to a different world and shown me not only the strength and resilience of the human spirit but the real goodness in people. We are lucky to have some many good ones in our life. xoxoxo

  10. Diane June 3, 2012 at 12:43 pm #

    Dearest Laura. Always delighted if your news is ‘steady as she goes’, and then there’s your latest blog and I can hear your sadness as I try to comprehend how you manage to keep being the person you are. As always I send you all my loving thoughts. Di

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