I’ve been on meds now for getting on 6 weeks. I’ve been much less anxious then I was before, I have my emotional moments but not the massive up and downs I was having before.
Is this the medication working? Is this me feeling good? I don’t know. I want it to be down to me but I feel it’s more down to the meds. Now I feel ok it makes me wants to come off them so I can get my life back. But at the same time I don’t want to undo how settled I’ve felt.in scared that after 6 months I won’t be able to cope without them. I started counselling on Wednesday last week I was anxious before going more then I’ve been in weeks. After talking things through about the diagnosis of TOF with ny little one I felt very emotional and raw. The only difference was by Thursday i felt ok again. My confidence is going up and I feel better for it.
I made a new friend Thursday, B and her little girl. The little girl is 6 months old and B is a single mum, she recently had to leave her hometown with barely anything. I felt for this girl I felt the need to help her. She doesn’t know many people so me and two other friends took her out for lunch. I paid for her to have a meal a drink and a pudding. I tried to help by settling her little girl to sleep so she could relax. All I could think of was if this was me I’d be so grateful if someone did this for me.
When I no longer need support and I’m stable without meds I’d really like to become a volunteer for HS. They have helped me so much and I’ll be forever grateful. So repay them for all they have done I want to give a other family the help I was given. Use my experience and strength I’ve regained to good use.
So the other day was my blog anniversary so I’m going to link in my first days blog posts. This is how my blog first started as a way of coping and sharing my story.
These were all posted on my first ever day of blogging. I re read them and still feel like I did a year ago reading them. This counselling is hopefully going to help me to move on from the emotion of it all.
A year ago today I started this blog, I started writing to get out there everything that was going on in my head at the time. I told my story of my sons congenital heart defect and my experience of how it all came about. A year later I’ve written hundreds of blog posts and got over a hundred followers.
A lot has happened in a year but one things for certain I didn’t expect to still be upset over my little boys diagnosis. From here I will get counselling and talk about it all and hope to finally come to terms with it and put it all behind me.
I’m still awaiting diagnosis for my eldest sons autism diagnosis and hopefully that will come in the next month or so. My immediate family unit (husband and 2 sons) feels stronger. I feel stable and able to cope better with challenges they bring.
In a year from now I hope to still be writing but about how things have improved and how I hope to use my experience of heart defects, my organisational skills and my ability to overcome this depression to help other families facing difficulty. I hope that I can volunteer for the same charity that provided me with the support I so desperately needed.
So as it’s my blog anniversary I’d like to give you the opportunity to promote your blog in the comments. Share the link to your blog so others can follow you and read what you write. I look forward to maybe even finding new blogs to follow and new followers to my blog.
I had very strong beliefs against taking medication, I didn’t want to be controlled by it I wanted to be in control.
I had a chat about it with the dr and he was pushing for me to take them and it put me off again. But I got to the point where I’d had the most awful down day where I just couldn’t control my emotions anymore. I had this massive breakdown I can’t even remember what happened. It was after that I decided I couldn’t do the rollercoaster anymore. It was time to do something about it.
I spoke to my second support worker about it and she helped me realise that I have taken control back by deciding to do something about it. By deciding to take my life back I’m taking control of the situation. I’ve now been taking them for 3 weeks and I’m not sure yet if I’m feeling the affects of them or not. In a way I feel I am. My anxiety is dramatically reduced, the depression as deep as it was has lessened. I don’t have really down bad days I have days where I’m maybe a little bit tearful and a bit mardy. Which is good I don’t have the rollercoaster anymore. I feel a little bit of normality coming back.
I hope that after 6 months and after I’ve had counselling that I can come off the meds and start a fresh. I don’t want to become reliant on them because I’m stable I want to know I can do this without them in a few months time.
In a stupid way (maybe) I kind of feel proud of myself for taking this step towards getting my life back. I feel stable if not a little bit emotional for the first time in a long time. I have great friends and I have my sisters D and V.
When V refers to me as her big sister it makes me feel all warm inside (again stupid I know) it’s like she genuinely wants me to be part of her family. She’s accepted me the way I am and doesn’t try to change me or bring me down. I actually feel like I’m wanted because she’s chosen me to be in her life. She’s chosen me to be her sister. I feel happy she’s chosen me I’ve never had that before. She supports me through thick and thin.
So for those of you who are fortunate enough not to be heart parents you might not know it’s Chd awareness week or heart week.
I’ve been sharing posts and liking posts to try and spread some Chd awareness.
Here comes the rant…..
My family don’t like and share the posts I’ve shared. They don’t comment on my posts in support or like the posts I write In support. Everyone on my Facebook was sharing the really fucking irritating little hearts on their status about breast cancer awareness. Can someone please explain how a heart emoji represents cancer? Or why they all do it for cancer but not for CHD? it’s simple because unless you’re going through it not one of them gives a flying fuck. Yeah ok admittedly I knew nothing before my youngest was born but if someone has said to me @let’s raise awareness” for this I’d be like yeah let’s go for it. It’s important to someone right?
My little “sister” V has been amazing and so supportive. She’s been sharing the love on my posts and sharing Chd posts on her Facebook wall. She’s a good one that girl. Why can’t everyone have that spirit in them to share some awareness?! It’s like a few seconds out of their day on social media to share a post or have a read or watch a short video on different heart defects. Spread the love people ❤
It’s so lovely to see more awareness of CHD. There’s so much around cancer and other illnesses but no-one seems too bothered about Heart Defects. They are very real for the family going through the diagnosis of being told your baby has a problem with their heart.
Please spread the awareness follow the blog for more CHD stories and share the posts.
Tetralogy of Fallot (TOF) is a congenital heart defect that is present at birth. Symptoms include episodes of bluish color to the skin. When affected babies cry or have a bowel movement, they may develop a “tet spell” where they turn very blue, have difficulty breathing, become limp, and occasionally lose consciousness. Other symptoms may include a heart murmur, finger clubbing, and easy tiring upon breastfeeding.
The cause is typically not known. Risk factors include a mother who uses alcohol, has diabetes, is over the age of 40, or gets rubella during pregnancy. It may also be associated with Down syndrome. Classically there are four defects:
a ventricular septal defect, a hole between the two ventricles
pulmonary stenosis, narrowing of the exit from the right ventricle
right ventricular hypertrophy, enlargement of the right ventricle
an overriding aorta, which allows blood from both ventricles to enter the aorta
TOF is typically treated by open heart surgery in the first year of life. Timing of surgery depends on the baby’s symptoms and size. The procedure involves increasing the size of the pulmonary valve and pulmonary arteries and repairing the ventricular septal defect. In babies who are too small a temporary surgery may be done with plans for a second surgery when the baby is bigger.Most people who are affected live to be adults.Long-term problems may include an irregular heart rate and pulmonary regurgitation.
TOF occurs in about 1 in 2,000 newborns. Males and females are affected equally. It is the most common complex congenital heart defect. It was initially described in 1671 by Niels Stensen. A further description occurred in 1888 by the French physician Étienne-Louis Arthur Fallot, after whom it is named. The first surgical repair was carried out in 1954.
Wording taken from Wikipedia