I don't know about you but I find myself telling lies quite frequently......
Gosh that makes me sound like a really bad person! If you talk to anyone that suffers with a chronic health condition they will probably tell the same lies as I do.
The lies I tell are always related to my health.......I wish all this blog had been a lie and really I am alive and well living the life of Riley!
I have friends and family divided into two camps, those I tell the truth to when they ask how I am, no matter how bad it is and those friends and Family that I don't bother with as either a) they don't care and are asking out of a sense of duty, b) they don't get it and I really don't have the energy to waste explaining it again or c) I want to pretend I am back in my old life.
There are people that ask me how I am and I will reply "yeah I'm fine" and then quickly turn the conversation around to something about them to distract them from the fact that I just lied to their faces. There are also some people that do care about how I am but I still lie, because I want my old life back and I don't want the conversation to be dominated by my latest health issue. If I say I am fine I don't need to expand on it. Those people I think know, that I am lying and are happy to conspire with me.
My family you will be relieved to know are on the list of people I tell the truth to. With my mother who can tell how I am doing purely by my voice on answering the phone, there is no point in lying. She popped around today, she text me to tell me that she and my father were on their way over. It was 3pm and I had just crawled into bed. I was having one of those days where I didn't feel right, I felt unwell but I couldn't tell you why, as in there was no sore throat, no cold, no upset stomach. I just felt really hot (which is bizarre for me) and not right.
I crawled out of bed as I really wanted to see them, sorted the dogs out so they would be entertained when my folks came around and realised standing was making me feel like a space cadet. I sat down as the room had started spinning. I was having what is known as a POTSY day! I tried really hard to pretend I was OK whilst my parents were here as Hubs is working until 10pm. After their visit I would be alone and I knew they would worry. It didn't work, my eyes felt like they were rolling around in their sockets and I was gasping for breath. I ended up admitting that I had just crawled into bed when mum text me. This was met with "why didn't you say?" To be honest I don't know why I didn't. I just like seeing them so much, that I would walk over hot coals to do so.
Mum told me my eyes looked weird.....I will leave that to your imagination. They felt weird like they bulging out of my head. I also, according to her looked pasty, which again although I am pale in the last 6 months I have developed a permenant facial flush so I look quite well. Over the last few weeks the facial flush has gone and I have been left looking like casper the freindly ghost and I have dark circles under my eyes. I had actually caught sight of myself in the mirror before they arrived and had I had time before they got here I would have put some make up on to hide the fact I looked so bad!
I hate the fact that my parents now only stay an hour when they visit me as anything more knocks me out. I get so excited when the visit the pure adrenaline knocks me side ways. I hate the fact I can't visit them and I can't be a proper daughter and do things for them. Instead they have to do things for me. Its only little things like I wanted some track suit trousers to wear to physio but I can't get out of the house to shop. Well actually I could but it would take a week to recover. I refuse all their offers of help inside the house, it make me angry if they help. Even mum making a cup of tea for me makes me feel bad. I can't stand her helping me, its insane, its what mums do but it makes me feel guilty that I've added so much stress and worry to both my parents lives. It's a time in their lives where they should be free to do as they please as both kids have left the nest yet they are still tied down by us. The guilt I carry due to this is enormous.
So much has changed in the last year that I struggle to deal with the fact that 12 months ago I thought I was in the worst condition I had ever been in yet 2011 seems to want to surpass it. Yes I have had victories, we finally have put a few of the pieces of the puzzle together through my determination and persistence. Yet my health has further declined there is no magic pill for me to take that will see this all go away.
And that is what seems to irk some family members and friends that there is treatment but no cure. Some people confuse treatment with cure. They can not understand that I no longer seem to have very many good weeks or even days now.
Today I lied to a friend that this week had been good because I couldn't face sending another text message saying I felt terrible. I know if I was in her position (before all this happened to me) I wouldn't have understood how someone in this day and age could feel so ill all the time. I didn't understand how my sister could be so ill so what chance did a friend stand? I didn't have time to be wrapped up in someone else's life like that. I was too busy working and enjoying myself to stop and think for a moment what it would be like.
I hate myself for lying but what good does it do her to know that I feel like death warmed up? There's nothing she can do to help because all I want to do is crawl into bed.
I hate the fact that I have got to see both sides of the coin, I want the good side back.
What I will say is that this collection of illnesses has made made me a more understanding and compassionate person. I have learnt that I shouldn't judge a book by its cover and not all disabilities are visible. Its allowed me to reassess my life and realise that Mulberry/Radley handbags are nice but they aren't necessary for you to live your life. Some might say I've grown up, if they do then it was my illness that made it happen.
Don't get me wrong if I could get rid of my conditions and return to a normal life I would. But I wouldn't want the trade off to be that I lose the person I have become now. That my friends is no lie.