Do you ever wonder why your life cannot just give you a break and run smoothly ? I do.
I often feel things are going well and of course in essence they are. However I never feel entirely relaxed though, there is always a niggle of doubt. I'm always guarded as I just seem to lurch from one problem or issue to the next with periods of calm in-between. Enough time to allow me to catch my breath .
I wonder if I ever feel 100% happy ? I think I do but I'm often too scared to say so as if it will jinx the run of joy ! Then that annoys me too as I'm more an optimist than a pessimist of defeatist. I try to see the best in every situation but that's sometimes impossible even for me and my halo. I have recently been writing happiness is......posts on Facebook. I'm not sure why really, maybe to remind me that it's the little things in life all added together that make you happy. That a day cannot be written off because of one bad thing that happened. Sometimes I just need to remember to smile, smiles like yawns are quite infectious. Who wants to look at my miserable face all day long ?
So this week Tuesday started off like many others , chaos in the kitchen , and a mad dash to get out of the house on time. Eloise and I dropped Henry off at breakfast club as she had a repeat Tacro level scheduled for 8.30. On the way though she complained of a feeling of pressure on the left side of her chest not pain more like pushing. So after the blood test and a discussion with my lovely work colleagues we went to A/E . With the damned if you do, damned if you don't approach. We couldn't fault the care Eloise received. We were in hospital for 6 hours. For an anxious 15 minutes or so I was worried she was being admitted as the emergency department SHO crept around to cardiology with Eloise's belongings and a hospital nameband etc. At the same time the cardiology registrar decided to shut the door and be in a long discussion with the cardiac tech who performed Eloise's echo ! Stomach was in tight knots and my mind was in overdrive, even Eloise was worried she'd be missing out on scampi for dinner ! In the end no reason for her discomfort could be found just all serious possibilities were ruled out. So euphoria after despair and a reminder of how things can change so quickly in the life of a transplant patient. When you get good news you feel like celebrating, there is no feeling like it. Please don't get a serious or life limiting condition to feel this wonderful feeling of reassurance just trust me on this !
Then on Friday I heard the sad news that a young lady had passed away waiting for a second heart transplant in Papworth . Her mum and sister are part of my heart transplant support group. I have never met them but you still feel the ripples of grief. You try to find words of comfort for them but they never seem enough. We try to support each other. I cried on Friday when I was safely at home, before that I managed to control the lump in my throat and the tears pricking in my eyes. I cried while cooking the children spaghetti bolognaise, I'm sure the extra salt won't have harmed them. I'm never afraid to cry sometimes I feel I need to. I see crying as a release of stress and that the tears help me recover from feeling emotionally distressed and overwhelmed. On Friday I felt very edgy, I describe myself as prickly , I don't really want to interact with anyone on a deeper level when I feel like this. I think this is when I'm better off being on my own but that's not always possible. Last night there was no chance of solitude as I had made plans . I remained prickly for 24 hours until Saturday afternoon when I got to go for a nice long walk around the Harbourside on my own, just me and a camera . Then after eating dinner with the children and watching some family TV I retreated to my room to listen to music and enjoy calming, relaxing candle light. Today I'll spend the later part of the afternoon at the gym, I think a swim will help. I often need water to feature when I'm stressed. I'm repairing myself and it's very important.
I think the grief I feel for these "strangers" is heavily mixed with the grief I feel for Eloise. We are losing these people in our transplant world because of post transplant complications and it could happen to Eloise. I am mourning "normality", I'm mourning the fact that she'll never be cured, I'm angry. Even though Eloise is very much alive I am experiencing loss, I feel dread, guilt and anxiety regularly. I try to cope, I do cope , I'm lucky. Grief isn't just about dying it can be triggered by the loss of anything as well as anyone. I'm grieving the loss of the healthy child I gave birth too and nurtured for 21 months before myocarditis took hold. Even saying that I am grieving makes me feel guilty as my child is still alive, her donor isn't. Eloise was so close to death, less than 24 hours to live when her transplant call came. I know my Warrior Maiden has plenty more fight and life in her yet. I'm determined to spend more time with Eloise this year, not easy when they're 15 ! We had a great time climbing over the O2 together, we both enjoy musicals so we have a few more of those booked, and next month we are going to do a Jungle Jump ropes course . Then I'm being dragged unwillingly to the Harry Potter thing and Hampton Court in August !
Through all of this one thing always remains with me and that's Hope ❤️
