A Dream That May Become A Memory.

When I think about all the things I wanted to do in my life, I think why did I wait, why didn’t I just do them. Unfortunately, I’m not one to think of myself first, I think on a practical level.

I have always been one of them people who way up all the options first, by saying things like:

  • If I do this will I be able to afford my bills?
  • If I start this course how will I work and look after the kids?
  • if I was to work here would it be feasible to move with the extra cost of rent?
  • If I was to study could we afford to live off one income?
  • If I was to work there how could we get the kids to school?

When I think about the “what if’s” I get myself so worked up that I can’t contemplate putting myself first. Now that I’m older I have come to realise that it’s so important in life to do what makes you happy because you never know when your life can take a turn for the worse.

I, unfortunately, can’t change my future as much as I would love to go work and study I know I’m not capable of keeping up with the load. I love now that I have found my niche with writing which keeps me busy.

I just want to remind people to, “Never let your dream slip from your fingers with the what if’s because life can change in an instant and forever that dream will be a dream.”

I Can’t Stop My Struggles, It’s Just Me.

I hope everyone is doing OK.

Over the last week mentally I have been struggling, not only with my new diagnosis but just in general. Between going to doctors appointments and life, I have just hit a brick wall. When I get this point in my life I hit struggle street, what do I mean by struggle you ask.

Well, when I talk about a struggle, I talk about tasks. These tasks are near impossible to do, without a struggle. I fight my inner demons to do the simplest of tasks. if I don’t complete these tasks my inner demon becomes worse and I feel like it’s defeated me.

I still don’t understand why these tasks are so hard to accomplish when I’m in my hour of need. Why my mind feels the need to make me feel even worse than I already do, but it’s just the way the mind works.

I thought I would share some of my impossible tasks with you all so here we go:

  • brushing my teeth
  • showering
  • brushing my hair
  • eating
  • cleaning
  • answering the phone
  • getting out of bed
  • getting dressed
  • talking

Tasks like these are everyday tasks, but for someone like me when I’m at my lowest become the hardest tasks of my life. No matter how much you know you need to do it it’s just not possible to do. Unfortunately, this is part of my illness, but I wanted to share my struggle.

My Rare Condition.

I hope everyone is doing OK.

This is one blog that is hard for me to share as it is new and I’m trying to wrap my head around the diagnoses still, but this is my life. If you are a follower of my blog you would know I was admitted to hospital last week, as my GP was fearing the worse. Now to explain the fear that lead to the hospital that gave me my diagnosis.

It started with me going to the GP due to my head. I have been experiencing a lot of different issues which they believe are all connected to my head, but what’s caused all the issues they can’t explain. Then I experienced the worse issues I could have ever imagined, and that is indents in my scalp.

It honestly feels like my scalp is caving in on its self. My GP had no idea what was going on as I never had this before, so she rushed me to the hospital, The Doctors there had never seen it before. They ran bloods, did CT scans, 30-minute obs, every Specialist got called in the hospital till they got a Specialist who knew what it was.

The Diagnosis is Cutis Verticis Gyrata (CVG for short) it is where the scalp thickens and deep folds begin to form in the scalp it is described to look like a form of the brain. it happens in 0.026 in 100,00 of woman, and 1 in 100,000 men.

They are unsure of the underlining reason behind why I have it, so I will be tested more. There are so many unanswered questions, so many emotions, as well as the unknown.

At the moment I’m just trying to get my head around the diagnosis. My days are hard as I’m scared to touch my head, I don’t like the feeling and every day it’s growing. I don’t know what the future holds, but for now just getting through each and every day is the best I can do.

Hope you enjoyed, and if you have CVG I would love to hear from you.

Made To Feel Like Crap.

Hope everyone is doing OK.

This week was a hard week with being admitted to hospital for a couple of days being away from my family has brought my mood right down. The hospital experience was terrible and not having my family with me made it even worse.

I was admitted due to my GP getting worried over more issues arising from what she thought maybe my head she urgently rushed me to hospital. Once there I became the talk of the hospital (which I will explain in another blog). Specialist and doctors from everywhere were trying to work out what was wrong.

Unfortunately, I didn’t meet with very many nice ones, I am not the smallest person and do has some weight and struggle a lot with my weight, but I don’t need to be reminded of it every time doctors can’t find a reason from my issues.

While in there one of the doctors said straight to my face “you know maybe if you didn’t have the weight you wouldn’t have half the problems you have!”, I got these issues while I was small, not fat by the way, and do you really have to blame my weight for all my problems seriously. Most of the specialist and doctors were like that, it was heartbreaking coping with all that.

Also, they wouldn’t allow my family in, it was like I was a germ or something. No matter how many times I asked them if my family could come in they kept saying, “not now just hold off for the time being”. It was so hard mentally being there alone having all these strangers around. I just locked myself in my cubicle and stayed on my phone to my husband the whole time.

Now I’m home I’m worse mentally, I cry all the time, I feel sad and alone. It’s going to take me a lot to get over this, but I will get there in the end.

I’m Back

Hope everyone is doing OK.

It feels like forever since I wrote last, so I wanted to give you all an insight into the last week.

Firstly I would like to apologise to you all, as I was trying to work on my site and lost everything. I finally manage to get it recovered after help from my wonderful husband, helping by talking to the host site to get it finally fixed.

While getting my site fixed my health plummeted to the point I spent a couple of days in the hospital. I’m still not feeling the best with now getting a cold on top, but I will get there.

Life has taken an unexpected turn that I’m trying to get my head around, a new diagnosis, more tests. A whole new chapter to learn. One I will share with you all.

For now, I wanted to catch up and let you know I’m sorry and I’m back.