Feeling Slightly Lost.
Now I should most definitely be used to this by now. And to an extent, I am. But now that my steroids have reduced low enough, I'm experiencing a lot of Crohn's symptoms. Enough that I've actually had to phone in sick to work.
That might not sound like a big deal, but to me it always has been. I know I have this for life. Which means when I'm ill, I can't just take time off, because it's not going anywhere. But occasionally it does get to the stage where I'd be no use at work anyway. Which sucks. So I've phoned in sick. I'm waiting to see my consultant this week also, in the vague hopes that they'll say "hey actually we have this really good plan of action that isn't invasive and doesn't involve you physically being in hospital and you can probably just get on with your life". That won't happen. So until I see them and know what's going on, I'm kind of in limbo.
Back to the symptoms though, because lately I've had a few people asking me what it's actually like. The most obvious and well known symptom is the abdominal pains. They can get pretty severe. It turns out that lately there's been a lot of research done with women who have Crohn's and have also given birth. 9/10 of them said Crohn's hurts a million times worse. So that's the closest to explaining the pain I can think of getting. This is actually one of the symptoms that I hate the least though, because I have coping mechanisms now to deal with it. And it's not constant - there's a constant underlying pain, but the sharp pains referred to come and go. Like contractions I guess! Crohn's contractions.
The least easy symptom to get people to understand is the Crohn's brain, as I tend to call it. Basically, it just destroys your ability to concentrate on or remember things. So whilst I'm sat at home resting, I've read the same chapter of my book three times because I can't remember what happens or I keep getting distracted by literally nothing. This gets pretty frustrating.
There's a load of other symptoms, but I could probably write an individual post about those. My main point to writing this was that I wanted to explain how this weird limbo stage feels before treatment. Something frustrating about it that I really try not to get frustrated with people over is when I get told that it'll all be okay once I've seen the doctor. And I know that this is only ever said from a well meaning place, but it's kinda tough to swallow. Because it's just not true. There's weeks of waiting time involved, each day with your health deteriorating further. And then there's the solid chance that whatever they decide to do just won't work. That happens a lot. In the mean time there's just a lot of worrying and depression. Depression affects the majority of people with a form of IBD, but that's probably not much of a surprise.
Unfortunately for now, the Crohn's brain is having its way with my concentration and I cannot for the life of me think what it was I wanted to actually put. So instead I'm going to find a crap film to watch that takes very little brain power and snuggle with my pet rats who are eagerly looking at me as if to ask when it'll ever be time for todays outing. When I remember what I was going to put, I'll post again. Can't have too many posts, right?
Love and shit x
That might not sound like a big deal, but to me it always has been. I know I have this for life. Which means when I'm ill, I can't just take time off, because it's not going anywhere. But occasionally it does get to the stage where I'd be no use at work anyway. Which sucks. So I've phoned in sick. I'm waiting to see my consultant this week also, in the vague hopes that they'll say "hey actually we have this really good plan of action that isn't invasive and doesn't involve you physically being in hospital and you can probably just get on with your life". That won't happen. So until I see them and know what's going on, I'm kind of in limbo.
Back to the symptoms though, because lately I've had a few people asking me what it's actually like. The most obvious and well known symptom is the abdominal pains. They can get pretty severe. It turns out that lately there's been a lot of research done with women who have Crohn's and have also given birth. 9/10 of them said Crohn's hurts a million times worse. So that's the closest to explaining the pain I can think of getting. This is actually one of the symptoms that I hate the least though, because I have coping mechanisms now to deal with it. And it's not constant - there's a constant underlying pain, but the sharp pains referred to come and go. Like contractions I guess! Crohn's contractions.
The least easy symptom to get people to understand is the Crohn's brain, as I tend to call it. Basically, it just destroys your ability to concentrate on or remember things. So whilst I'm sat at home resting, I've read the same chapter of my book three times because I can't remember what happens or I keep getting distracted by literally nothing. This gets pretty frustrating.
There's a load of other symptoms, but I could probably write an individual post about those. My main point to writing this was that I wanted to explain how this weird limbo stage feels before treatment. Something frustrating about it that I really try not to get frustrated with people over is when I get told that it'll all be okay once I've seen the doctor. And I know that this is only ever said from a well meaning place, but it's kinda tough to swallow. Because it's just not true. There's weeks of waiting time involved, each day with your health deteriorating further. And then there's the solid chance that whatever they decide to do just won't work. That happens a lot. In the mean time there's just a lot of worrying and depression. Depression affects the majority of people with a form of IBD, but that's probably not much of a surprise.
Unfortunately for now, the Crohn's brain is having its way with my concentration and I cannot for the life of me think what it was I wanted to actually put. So instead I'm going to find a crap film to watch that takes very little brain power and snuggle with my pet rats who are eagerly looking at me as if to ask when it'll ever be time for todays outing. When I remember what I was going to put, I'll post again. Can't have too many posts, right?
Love and shit x
Loving your blog Amy, please keep going if it's giving you some rest of the whole shit you have to deal with. P.s. is there a way we can select subscribe and we receive notifications on our email inbox of your lovely posts fresh as daisies?? Lots of hugs xxx flips xxx
ReplyDelete