I seen this on Facebook and stole it! Ha ha. But I stole it to tell you all how it is for me and many others living with a chronic illness. Some of them apply all the time, some I feel occasionally. I will try and make it as light hearted (excuse the pun) as possible, but don’t take the humor to mean that each point is not valid or has an impact.
- I always feel guilty…
Well this is quite a statement. To be fair, i do feel guilty for having this thing that I try to ignore but tit follows me around like an annoying child. I want to shout at it to go away but know that back lash will be worse. I have many types of guilt, when I have to let people down last minute because I am ill or cant manage to summon any energy. The guilt that what I have does not just impact me but my family and friends. The guilt that people have to change their plans to accommodate me. What I have learned over the years, is guilt is nil point because I have no control over it and I can not change the circumstance that is causing the guilt, so this one I really try not to dwell on.
2. I feel like I am alone….
Sometimes. But I have an amazing network and have met many other Congenital Heart patients who have become very close friends. I know if I am having a bad day that I can call on these guys and suddenly I don’t feel like the lone ranger any more.
3. I often have anxiety and depression…
Yes and yes. I am working on it. I have a fairly positive outlook on things but there are always those niggles. I think everyone gets anxiety to some level.
4. I am almost always in pain….
This is true and this really sucks. Pain is invisible and until you have suffered then really you have no say on this subject. I suffer chronic pelvis pain but also have pains all over my body. It sucks! So please if someone you know is in pain, have some sympathy.
5. Every Healthy Day is a gift….
Oh YES and I love gifts!! Lately I have not been given many but boy I love a day when i feel good and can get out and on with my life. Surprise gifts are the best.
6. I don’t look sick….
Well on a good day, no I don’t. The only tell tale sign would be the slight blue tinge to my lips. People have asked what shade of lipstick i wear as they like it. Hmmm I don’t think mauve to dark cherry (depending on the day) is a good lippy colour on anyone!
7. It seems impossible to get out of bed….
When I was younger I would sleep for most of the morning. Now I try and get up but some days snooze gets hit over and over. If I am poorly, I may as well not set an alarm. I am NOT lazy, I just need more sleep that healthy people and that is that!
“I’m great in bed, I can sleep for days.”
8. I am afraid to work, make plans or have a life….
I don’t like making plans too far in advance as I will probably have to change them due to the screaming child. (See number one)
I do work, but part time and I have an amazing boss.
I am not afraid to have a life, we all only have one life and we should not be afraid to live it. If something happens then it happens, but I really try not to let my illness stop me from trying. I am more afraid of not having a life and missing out on things.
9. Exercise doesn’t always help…
We all know that exercise is good for us right. Well unfortunately I cant do the gym or go a run because I would keel over and die.
But I do try and keep my body moving at my pace, but believe me it is by no stretch of anyone’s imagination classed as exercise!
10. Not all Doctors Understand
I am all over this one! Because I have a very complex heart / lung condition nothing in my body comes with in ‘normal’ perimeters. All my blood tests read ‘wrong’ and have all the non understanding Doctors freaking out. My oxygen saturations are 20-25% lower than Joe blogs and have all the medical staff reaching for the o2. It can be frustrating having to tell them that is normal for me, and some of them think I am telling them how to do their jobs. Which I guess I am.
11. I feel useless – Almost daily
I hate not being able to do stuff and having to rely on others. This is an ongoing battle.