Entry 42

As promised in Monday’s post, I am re-blogging to entries from Journal of the Nightmare Patient which I previously shared under my ‘nom de plume’. This is the second entry from my e-Book:

One infection clears up. The prospects of being discharged are promising. Then, another infection makes itself known.

The cycle keeps repeat itself, over and over again.

There’s no respite. None at all.

As soon as the doctors think that they are on top of things, something else comes along. We are constantly taking one step forward and several steps back.

I’m fighting a losing battle.

I’ve lost count of the number of central venous catheter’s or PICC lines I’ve had put in and removed as a precaution of being an infection source. Every time the doctors take one line out, some form of line goes back in a few days later before it has to come out because of an infection risk.

I feel alone. I don’t know whether I’ll live or die. I struggle to find anyone who understands what’s was going through my head. People are getting bored of me declining invitations to socialise. They’ve stopped inviting me out altogether now because my response are always the same: “no, I’m in hospital”. Most communication has stopped and they leave me alone as they carry on with their lives. But then there are friends, like Gazza, who I’ve neglected. Texting consumes effort and there isn’t much to text about. Phone calls are near impossible when my I feel so unwell and my signal is rubbish. Maintaining friendships has became difficult because I feel too tired to make the effort. But, I’m also looking after number one. I know I push  away the people who care about me because I’ve convinced myself that one day they’ll also get bored and forget about me. I don’t know how to get out of this horrible cycle.

I feel isolated. The cards of well wishes pile on the door mat from people who don’t usually give me the time of day. These well wishes are meaningless. Whenever I’m alone in this isolation room, I’m surrounded by these cards, but where are the visitors to keep me company? Despite offers of “if there’s anything I can do, let me know”, which seem to be steadily flowing in, very few have delivered on the “you could come and visit me” suggestion. The worst excuse for not visiting is “I don’t like hospitals”, which disheartens me. I don’t chose to be here. This isn’t a holiday for me.

I’m also worrying about my money… It’s an expensive luxury to be a patient. The sick pay has run out and I’m living on an incredibly tight budget.

Being a patient doesn’t stop the financial obligations. Being a patient doesn’t mean that everything suddenly becomes free.

When I’m in hospital, direct debits still have to be paid. While in hospital I have to pay to watch TV and access the Internet. I have to pay to read a newspaper. I still have to buy birthday cards and the toiletries that I need.

When out of hospital I have to pay my way. I can’t walk out of a supermarket with a basketful of shopping without paying. I can’t do activities which cost money for free because I’m sick and not working. It would be more economical if I had gone to prison – at least prisoners (apparently) earn money while serving their sentences so that they have some cash once they’ve served their time!

There’s also a battle for me to claim benefits while I’m sick because I can’t attend their appointments to prove that I’m sick. I don’t understand why it’s so difficult when there are so many people claiming a load of benefits, leading comfortable lives and even get a house chucked in for free if they need one! Benefits are supposedly available for those in need but I see that they’re more easily available for those who plan to never work and opt for the easiest way of life. I have to prove that I’m unable to work, and even then the benefit assessors haven’t accepted the many hospital letters that I’ve supplied them with. The work shy and lazy bums appear to be more equipped with the knowledge of how to claim every benefit that they’re ‘entitled’ to; I must have missed that lesson at school. Living on benefits shouldn’t be a way of life. Benefits should be capped. They should only be available for times of real hardship.


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