So to start with I want to say this post is really deep (sorry guys) but I feel that I can share with you guys how Im feeling as part of what i have learnt is to share how you are feeling can help!!And tbh its easier to write it down rather than actually speak to people.
First off I want to praise all the nurses at Derriford hospital and how they have supported myself and my family throughout both our visits!! Im really glad of the support from the nurses these last few days!! I have really been struggling for a couple of days with the not knowing and the lack of control I have.
Some of you may know that I suffer from Social Anxiety Disorder and Depression. I have suffered from both of these from quite a young age. I have had counciling many times but until I was ready it never worked. But when I was ready I learnt that a good way to keep myself from having a downward spiral was to open up by either talking to someone or writing it down!! So here I am choosing that at this moment it is easier to write it down.
The way I manage my anxiety and depression is to have control, be organised and to be with familiar people. So as you can imagine atm none of these are within my grasp. But the nurses at Derriford have been amazing at reassuring me regard how im doing but also how Leya is doing. Being isolated due to waiting on the whooping cough results has also be a major factor to me struggling as I feel that doctors arent taking me seriously and my paranoia makes me doubt if they think I am making this up or worse than it actually is!!
So today we had Leya’s heart scan which came back normal!! MASSIVE sigh or relief. But on the flip side to this it means that we are no closer to find out what is wrong with her. But her smile is what is keeping me sane atm!!
So with this result we are still in the dark with what is causing these episodes. This is what I am struggling with, I know that we needed to have the tracheostomy because of the VCP but we were told that this would stop these episodes so for them to have carried on I kind of feel responsible. As many of you parents out there if your child has ever been ill you will know that you would give anything to swap places with them and that couldn’t be more true at this present moment.
So the last few days I have been feeling really down, useless and just generally crap!! I have been told Im allowed off days as what Im going through is a lot but they way my mind works is that Dan and our families are going through it too and they are coping so this is turn makes me feel worse. Its a viscous cycle my emotions but I am trying to grab them and keep hold of them very tightly as to gain control of them. Its a much of me feeling useless as frustrated!! I just feel that my head can not take any more bashing against this rather large brick wall!!
On a happier note we have got Leya’s humidifier for home and we have the funding for this one and a spare just in case!! And its rather fancy and we have seen an improvement with Leya’s dryness which is a improvement for her as it means less suctioning and less nebulisers.
She has also put weight on so she has gained what she lost and put more on but she had been on IV fluids so we are expecting some of that to come off and the dietician will be extra happy with her if she keeps going like this!! She now weighs 11.7lbs!!
So to finish this blog I just want to say that I have written this as much to help me get things of my chest but to also show others that you can talk about mental health as there is still a big dark cloud about it!! It is not a weakness, it can not be helped, it doesn’t control you or make you any different from anyone else and it has taken me a while to understand this. So for anyone who reads this with the same problem keep your head high when your feeling down as your just as normal (whatever that is) as everyone else!!
Lots of Love