That feeling in the pit of my stomach
I wrote this back in November, just after my last post was written : https://brokenglassshimmers.wordpress.com/2014/11/15/off-the-radar/ . For those of you who don’t get a chance to read that post, I spent most of November in a psychiatric hospital ward. This post covers how I was feeling around the half-way point.
At the moment I feel as though I’m waiting for the inevitable. My mental health is still up and down but my bigger worry is now my physical health.
My white blood count, especially my neutrophils have been edging downwards for over a month. Today as I was seeing the hospital doctor on call about my pain levels, I found out that my count has lowered even further. My neutrophil count should be between 4-7, instead it’s 1.
I’ve been told that I have to be observed (blood pressure, temperature and pulse) every 4 hours and if I get the slightest sign of infection I have to inform the staff. If I do get an infection (which is highly likely with my immune system this low) I will have to go to a general hospital for IV antibiotics.
On top of my immune system worries, is the fact that it looks as though I’m having a flare-up of my Ankolysing Spondylitis, but all of the medication that would actively fight the condition would lower my immune system further and the pain meds don’t seem to be doing enough as I’ve spent a great deal of the past couple of days in agony.
I always knew that my condition couldn’t be reversed, but I hoped that it could be stabilised. Now the future looks full of both never-ending physical and mental pain, co-existing in a constant negative cycle.
I have so many fears about getting worse. I worry that I’ll end up in a wheelchair or stuck in bed most of the time. I fear losing the shred of independence that I have remaining, but most of all I’m terrified that it will put too much pressure on me and my partner and that our relationship won’t survive.
People say that if he loves me then he’ll stick by me but it’s not always that straightforward. If he ends up becoming my carer it will increase our stress levels, he will have less freedom and I will end up reliant on him.
Even if he doesn’t have to become my carer, there is still the issue of living with me whilst I’m in constant pain and the mood swings and insecurities, frustration and anger that occur as a result of that.
I feel like my world is getting smaller and that as a result of my physical and mental illness, I’m missing out on opportunities that other people my age take for granted. How can I expect those without my condition to understand my fears and negative reactions, however willing they may be to attempt it.
I feel isolated and afraid that this is the best I can hope for from my life. I know that there are others worse off than me and their bravery puts me to shame. At the moment though, I don’t feel brave. I feel like life is what is happening to me against my will rather than as a result of the choices I make for myself. Does anyone else ever feel remotely like this?
Please feel free to comment, get in touch via Twitter or email firstname.lastname@example.org . I’m hoping that my next update will be within the next few days so I can begin to bring you up-to-date with what has been happening.