Affecting others

This blog has been fairly self-involved. I am quite happy to admit that. It has been a way for me to organise my thoughts and get them out of my head.

But one thing that i have been learning recently is that my PSC, and in fact my IBD as well, effect other people too.

Family

It used to be that every couple of months my brother, my father, me, my partner and some selected friends would go on a lads’ weekend to Cardiff. On these weekends we would eat curry, drink and have a laugh.

We were never violent, we are all happy drunks, so we would just wander around laughing and having a good time. We have not been for a while now. And it is unlikely to happen again.

Every time my dad and I am together we talk about it and suggest organising another trip but my reduction in drinking, to the point of not really having anything ever, has meant that this event will never be the same. And, to be honest, I do not think it is something that I’d like to do anymore.

Being the non-drinker really isn’t fun and I am sure having me around while they are all getting merry wouldn’t be their first choice either.

My partner

My partner worries. He is a worrier. In fact, I believe more of his brain has been set aside to worrying than mine has been to all of the work and studying that I’ve ever done in my life.

It is because of this that I try to keep him shielded from a lot of what i am going through. If I show that I am worrying then he’ll worry even more.

I make a point of going to the hospital on my own. I make sure I have all the facts before I let him know anything. I have adopted the phrase ‘nothing to worry about’ as a personal mantra.

As you may know from my last post, my blood has been a bit stoopid recently. This has, to be quite honest, scared the crap of me. Talking to our doctor friend, who is usually the voice if reason when it comes to things to worry about, didn’t really help when he went a bit quiet and sounded very concerned.

I made the mistake of letting my partner know this.

This other morning while I was enjoying having the whole bed to myself while drifting in and out of dreams, Joe was up and getting ready for work. I remember him coming in, placing his hand in my head and walking away.

In my semi-conscious state I just presumed he was checking to see if I was awake. Not so.

He has been so concerned that I may get an infection and become really ill that throughout the night, whenever he woke up, he had been checking my temperature to make sure that I didn’t have a fever.

I just… Don’t know what to say or write about that…

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Stoopid blood

Image by Heo2035 / Creative Commons

So, it’s decided; I have stoopid blood.

As I have recently moved, I have signed on at a new GP surgery. After having gone through the what-was-meant-to-be-short meeting about my medical history they decided that I should have a blood test.

Now I am use to these blood tests. I have them all the time as the meds that I am on warrant regular testing. Usually at least once a month to make sure everything is staying where it should and nothing odd is happening. About 9 months ago these monthly blood tests were changed to quarterly ones as in three years my blood results have remained mainly stable. So I wasn’t expecting anything bad to happen in this one.

I did the usual. Wandered in to town in the morning. Had a chat with the nurse about where my good veins are and had the blood taken. No problem. I’ll get the results within a couple of days.

That evening I was on the phone to a friend and I had another call come in. It went to voicemail and I didn’t think anything of it. Most likely it would have been a call from my dad asking when Dr Who was on. I finished up with my friend and listened to the message. What I didn’t expect was the head of the surgery calling me, out of hours, telling me that I must stop one of my meds immediately.

He was so concerned, in fact, that in a 49 second message he told me this 3 times.

It appears that after 3 years of doing a normal, run if the mill job my immunosuppressants have decided to work overtime. Maybe they unionised or something.

What this means is that my immune system is so bad at the moment that the slightest infection, a cough or a sore throat could kill me.

Having reduced my medication I can now say that while my results aren’t in the normal range yet, they are getting better.

I still need to avoid being around children and it would probably be beneficial to stay out of the open plan work office to ensure I do not get exposed to many germs, but hey ho. Life must go on, which means work. Not that I can complain too much, since the move I have been allowed to work from home 4 days a week.

So, if the next time you see me I do not shake your hand or hug you, please do not take offence.

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