My wait for my hip appointment being brought forward continues, but I feel more positive than I did before. I know that I can continue to wait and although the pain is chronic constant and sometimes unbearable it is not a Sickle Cell Crisis. That actually made me smile and raised my positivity to another level.
A Sickle Cell Crisis takes full control over your body and mind but also your ability to do anything. It just completely disables you and darkens your entire world at that moment. Although I am having a difficult time and sometimes my entire frame of mind changes in an instant, I am grateful that I still have the strength to continue living, breathing and achieving.
I think one of the things that I find extremely hard to deal with is the lack of understanding from the people that you expect it from the most. Yes I think we call it on ourselves to a degree, by showing that we have strength beyond belief, while we continue to struggle, even if inside we are really dying. I am slowly learning to concentrate on trying to get what I can get done and stopping when I feel that I have had enough and the pain is taking over completely. It doesn’t matter if I have not finished what I am doing, it doesn’t matter if the gravy hasn’t been made or the salad is missing I tell myself I now need to stop.
Having a family is a wonderful thing and it is important they understand fully that you are not in control of fatigue, pain and mental exhaustion. These things do really exist they are not being made up, we are not lazy, we are not making excuses. Which person in their right mind would want to be born with a chronic illness that rules their life. Without health we have nothing and we have to always be fighting and struggling to get to where we want to go.
I have learnt to deal mentally with a lot of negativity that controlled my outlook on life and part of this was the way people viewed me and my successes in life. Now it doesn’t matter to me what people think or their expectations on me, I just want to be the best person I can be. I needed to look at all the things I had achieved so far in my life and count my blessing one by one no matter how small. Stop looking at what I could have achieved if I was not born with Sickle Cell Disease as this was a major cause of negativity and depression.
Yes I am still waiting for my appointment, while receiving wonderful encouragement through my blog posts. People are out there who are also walking this road or have just gone through surgery. It is important that we know that we are not standing alone and that there is other people going through exactly what we are experiencing. It is good to share experiences and to let one another know the thoughts and feelings that perhaps we find difficult to share with other people.
If you are going through the pain of Avascular Necrosis of the hip or just want to talk in general about coping with Sickle Cell Disease don’t be frightened or shy about opening up.
This is one of the reasons I decided to begin blogging because I want others to know that I am approachable and I want to help encourage those that are struggling and are finding things difficult. I also need encouraging and I thank everyone who has given me that little bit of encouragement that I truly need.