Monday, 21 July 2014


Okay, Today I have been thinking a lot about pain? and what it is? I mean, I see two different pain teams and not one of them has helped me. In fact they both say different I guess the problem is nobody really knows what pains is, and if that is in fact the case then should I really be surprised that they can't help me? Normally they would give the patient painkillers or advice; for what ever their problem or condition is. However they do not know what is wrong with me at this time. They do not know why my chest burns or why the pain is so strong, therefore the do not know how to treat it or me.... I was not surprised when they told me they were at a loss, I think I went in expecting it, I was not happy, I was not sad....I felt nothing. I simply sat a listened as my parents spoke, and the doctor answered their questions. 

They said things like ...
What if I were home alone? 
What if she were down stairs at night? 
What if she stopped breathing? 
What if we turn our backs? 

All the questions they asked that day were the very questions I often ask myself at night or when I have the time to think. However the doctor doesn't really trust my families fears, because he (or they) do not know the pain or the fear, he has not seen my mothers tears, or my dad sitting blank at night. I do, I have. I even see others cry for me, others who should not have to cry tears, not for me. I have seen my brother sit in fear because he is to young to understand. I have heard my family speak at night, how scared they are. So when the doctors act like I am just another teenager, trying to get some drugs or attention. When in fact I am one who tries not to take my painkillers, and do not enjoy being left in my bed for the majority of the day, I don't enjoy pain, nor do I enjoy the lack of concentration that follows with my cocktail of proscriptions.

So I ask many nights, how many days or hours do you spend worrying about a friend, or family member, or maybe even yourself? And how much of that do others truly notice or believe?

I know that people don't think I am ill unless they have seen it first hand,  I wonder however, how many are in the situation where they have pain, but no evidence? How many suffer in silence? Remember nobody is alone in the fight...

Kind Regards
Your friend

Wednesday, 2 July 2014

Future Past.

Today I have been thinking a lot about what it was like at the age of 13 and 14, how I felt, How it was. How others saw me...and I am surprised looking back at where I once comparison to where I am now. Yes I have not aged much, after all there is no jump from 14 to 16 yet I feel like I have learnt a great deal. I know how people and places can change their whole view of you on the one, small but complicated fact of a disability, condition or illness. I remember I felt angry all the time, because I felt so alone, even empty. I though for some reason I could and should punish myself for my own weakness. 

Now however I see that my HME is not my weakness, but in fact my strength. So few really know where they get their strength from, some say love, others say strength is only physical. I say strength is that one thing at the end of the day that will get you through tomorrow. I know when I wake up I will be in pain, just as I feel it when I lay down to bed each evening. However HME has given me in site into who I am and is the very thing that makes that changing of age each year worth it...because each year I get closer and closer to being treated like an adult, and not a child...which is something I don't feel I was for long. 

Try to think of that one thing that has changed you, that has made you who you are today. Who were you 3 years ago? what were your feelings, dreams? but overall who do you want to become? 

Remember nobody is alone in the fight. A very nice young woman told me today "we have to stick together" I could not agree more...what about you? 

Kind Regards