Nout as queer as folk

It’s true, when you go through your most difficult times you find out who is really important to you.  Then there are people that think they know what to say but actually get it totally wrong.  This blog is not directed at anyone and I am so grateful for those people that support me when needed, these are just my observations.

You don’t look sick.  With an invisible disease like Kidney Failure all the damage is happening on the inside.  I have some good days and some bad days (bad days are outweighing the good days at the minute) and sometimes I put a face full of makeup on to make me feel better about myself.  I may not look sick but come and spend a day in my shoes and then say that to me.

You were fine yesterday. Like I said above, I have good days and bad days.  I may have been able to walk a mile with Buddy yesterday but today I can’t get out of bed.  (Maybe because I did so much yesterday).

I didn’t think you would be well enough.  Having a chronic illness means you may have to cancel plans, this may be on the day if you are having a bad day.  People say they understand and “It”s fine” but deep down you know they are only being polite.  Eventually you stop getting invited places or people presume you wouldn’t be well enough to go.  I also can’t make future plans at the minute, I don’t know when I am going to start dialysis.  So all concerts/musicals/plays and holidays will have to wait.

Get better soon.  People mean well but I dislike those words.  I want to say well I won’t.  My disease is chronic, there is no quick fix, this is the way things are.  A transplant is fantastic but as I have learnt in the past month, it is not a cure.

I can cure you.  Have you tried this herbal remedy with cranberries in it?  Again you mean well.  But I have a fantastic team of top consultants, I’m sure if there was a one fix tablet (like you are claiming) they would prescribe it for everyone. Again, thanks but no thanks – I put my trust and my life in my medical teams hands.

They’ve made a mistake. Lets hope they are wrong.  Ok doctors make mistakes but they spend years at medical school and years in practice before they become a consultant to minimise these mistakes.  They don’t make mistakes when it comes to things like this.  I’m not going to miraculously make a recovery and not need dialysis – even I know the blood results and kidney function results aren’t good and I’m not qualified.  They haven’t made a mistake.  Don’t be in denial.

The person who doesn’t think you should get help.  Luckily I am not in need of a disability blue badge at this time but I have previously had one.  The amount of people giving me dirty looks because I have parked in a disabled bay!!!  Again it’s the whole invisible illness thing!  I almost feel like flashing some of my scars and shouting all my symptoms at them!  Also people that scold you for claiming benefits.  I claimed benefits last time I was ill, I was at Uni and most people had part time jobs to keep them going through Uni but it was hard enough to muster the energy to go to lectures let alone have a job as well.  I haven’t worked for a month now and my pay will take a huge hit next month (I haven’t worked at my current job for long enough to recieve full long term sick pay)  and this time round I have my own bills and mortgage to pay, thankfully I have my parents for back up who would never see me short, but again I am left to find support from the government, which some people find awful!  I am entitled to it, so I’m not ashamed!

How are you?  It’s nice to know people care and know that they are asking how I am but I was fine half an hour ago and I’m still fine now.  I don’t need constant checking up on.

You need to go and get checked out.  The people that panic when you sneeze.  I may have bad days but sometimes I have a headache, that is just that a headache.  It doesn’t mean anything, I don’t need to leave the party or work early.  It’s only a headache.

The ignorers.  Some people don’t know what to say and just sweep over everything and don’t talk to you anymore.  Thats their perogative.

The woodworkers.  People that come out of the woodwork when they hear you are ill.  Those people you haven’t heard off for years, people that weren’t there when you were healthy but suddenly want to know all the details.  That’s fine, I appreciate you care but if you truly cared you wouldn’t have lost touch in the first place?  I love hearing off old friends (Facebook is great for that) but if you are doing it just to feel sorry for me, then please don’t bother.

I know exactly what you are going through.  How are you?  “Well I’m having a bad day, I’ve been hit by tonsilitus but because I’ve got no immune system I’m in hospital because I’m actually really poorly” (this is just a scenario).  I know how you feel, I had my tonsils out when I was 10 it was the most horrific experience of my life!!! Ok, so that might have been terrible and I’m sorry for that.  These are the people that don’t like to be out done.  They are always going through worse.  Maybe they are.   We are all fighting our own battles and not everyone knows what happens behind closed doors.  But it’s not a competition.  Empathy is a fantastic thing.

My best friend visited me the other day.  She brought me flowers and chocolate (she knows me well) gave me a hug and we chatted.  We chatted about her amazing news that she is expecting a baby!!! We talked about family members, we gossiped, we talked about future plans, we talked about holidays, we just talked.  Not once did she ask me if I was ok, not once did we talk about medication or symptoms.  Not once did we talk about the future or my prognosis.  I wasn’t offended.  I didn’t want her to ask me how I was.  I just wanted to spend time with her.  As we said bye she hugged me and said “Take care, what is happening with you? I feel awful that I haven’t even asked!”  It was a perfect couple of hours.  Not talking about me.  Talking about someone else.  Talking about good news.

I feel this blog has been really bitchy – I apologise for that.  Like I said at the top, not aimed at anyone in particular.  Just my thoughts and observations written down.  I have experienced all the above situations and if you want to take anything from this blog, there is no right or wrong thing to say.  Nothing you say is anything I’ve not heard before.  Nothing you say can change what is happening to me.  Just be your usual self.  Don’t treat me any different and don’t act differently around me.  I haven’t changed.

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