Restoration of Self ❤️

Restoration of self ❤️

                            

                                         

      

It's now a few days since Eloise's cardiology review at Bristol Childrens Hospital. I should now be feeling relaxed and relieved it's over but I don't. The appointment went well with no shocks , so why do I feel so much tension in my body and why is my mind in overdrive?  Pre appointment I was quite tense, but that's quite normal for me now. Since her blips in 2013 I'm always on high alert. She looked well and felt well again this time around so that was a plus. The night post appointment it is normal for me not to sleep, it's a time of reflection, memories ,fear of the future. I know I advocate living in the present but every now and then I have to gaze a little futher.  

       

       Heart Transplant Survival Statistics, I know they're just maths and figures and can't detail lots of information about each heart transplant recipient but I keep thinking of them at the minute. I'm wondering if it's because we are heading towards Eloise's 15th Heart Transplant Anniversary next year.  When we transferred to the Freeman Hospital in Newcastle, we spoke with the transplant coordinators and we were given an information pack. Within that pack survival statistics , with patients living an average 5-10 years post transplant. Those figures etched themselves into my head, now they've improved, but I think it's now 10-15 years. So can you see where I am ? Obviously I can rationalise that these are just numbers and I have hope that Eloise will outlive them. Just wish I didn't know. 

      I'm doing all I can to reduce the tension coursing through my body. My back just aches, I have the most comfortable bed with a memory foam mattress but at the moment the bed is my enemy. Nights are so long, I'm tossing and turning all night, trying to settle, trying not to give up on the idea of sleep. I wonder if that makes things worse ? Should I give up and get up ? However I'm not one for taking a nap so I'd never gain that potential sleep again. I crave a good nights sleep, I hope I get one soon, this year would be good ! I'm listening to my body and going to sleep early which is a good thing as its the only way I can clock up enough sleep to enable me to function. 

        I've spent time in the gym, I've swam, I've sat in the sauna, steam room and jacuzzi but still I feel tense and I've not been able to zone out. Gym time is usually my best form of therapy, my antidepressant medication , I've even upped my dose to four visits this week ! I've tried reading that's not successful at the minute, no story had been able to suck me in this week. I've walked, I've shopped , I've sat in the bath for a few hours and I've eaten cake ! I have managed to watch a few films which is highly unusual for me. No surprise that I watched a film in the cinema but to choose to watch 3 films to the end at home is a shock. For me to sit in our living room is highly unusual, but I am trying so hard to relax as I have so much to do over the next few weeks ! 

        

I will just have to continue to be gentle with myself. I know if I don't take every opportunity to self care I'll feel worse and my brain fog will get denser. It's hard making time for yourself sometimes, we always feel guilty don't we ? However taking time out now means I'll remain well in the long run so it's worth it. I even sound as if I'm trying to justify the me time while I write this ! It's been good spending time with my children this weekend, just enjoying each other's company. I'll surround myself with those I love and fill my days with as many happy things as I can. I know I'll be ok again soon, I always am. I'll just sit things out and wait for the tide to turn again. Thank you for being by my side and for all your words of support this week. Love to you all ❤️

                        

      

   

    

Triggered

Triggered

         

It's funny how a day can change just like that. From being an ordinary not very exciting but quite pleasant Monday to a washout of tears and overwhelming sadness. You see someone unintentionally pulled the trigger. 

          It happened at the gym, in the sauna to be precise. Often the hub of conversation, today's being religion and going to church. I have a fair enough knowledge of the Church of England faith so I could partake in the conversation. Until I was asked if I went to church and the follow up question being what made you stop going.... I mumbled something happened in my life and fought the tears. Thankful that the sweat was already dripping into my eyes and saunas are poorly lit places. I then withdraw and became thoughtful and quiet. When the time was right I made my excuses and left the room. 

    You see the innocent question triggered something within me that made me recall a sad period in my life. I'm sure you can all guess what traumatic time I was left thinking of. Trauma triggers are quite upsetting , I can't control how I feel and often my reaction seems an over kill. I went home and cried so much that I gave myself a headache. In fact even five hours later my eyes really sting. It feels wrong to say I have PTSD ( post traumatic stress disorder ) but  guess that's what I displayed again today. The feelings are completely out of my control. You wouldn't think a conversation about God would do this to me, I guess it was a subtle trigger , I didn't anticipate how wretched it would make me feel. When Eloise was admitted to Bristol Childrens Hospital and the subsequent hospitals she visited The Freeman and Great Ormond Street we were asked our religion. This was duly documented , however it meant visits from the hospital chaplaincy service , it just wasn't for me. I found their exuberance testing and I couldn't cope . I didn't have the energy to explain our story anymore times, I didn't want to say why we were miles from home. I just wanted to shut down .  I admire those with a strong faith but mine was tested and it broke. I know what happened to Eloise just happened, just a rare complication but I can't be the only person to question why awful things happen to innocent children ! In the end I stopped saying C/E when asked, instead I stated we had no faith . Now Eloise's notes state C/E again as this is her choice and I support her decision. 

    I suppose my emotions are running wild and high at the moment as guess what ? Indeed Eloise has a cardiology appointment this week. I wish I could see what's going on inside that body of hers. So stress levels are high and I'm trying my best to stay happy but today I had a wobble and I cracked. Thankfully, a friend, hot chocolate and a warm fuzzy film popped me back on track again. 

     Please if you pray, pray for my Eloise to stay well, or just keep her in your thoughts. It's a tough journey we are on but with you all next to us we'll keep moving forward. Much love ❤️