Friday, 21 February 2014

Torture by nasal anaesthetic!

Today I have had one of the most painful experiences of my life.  I have had piercings, a tattoo, given birth and suffered nerve pain from a dying tooth but nothing, nothing compares to having Lidocaine sprayed up my  nose.

I know I sound like a wuss but it bloody well killed!  It was done nearly three hours ago and it is still stinging and making my nose run.

Why did I have Lidocaine sprayed up my nose?  Because I was naive enough to make an appointment with a local ENT.  It is not a mistake I will make again.

I haven't had the greatest start to the year, I had a cold over Christmas and then I had an infected root filled tooth which took 5 courses of antibiotics and a rather long and painful extraction to treat.  While all this is going on I've had trouble with a very dry mouth.  It's difficult to deal with, I wake up in the morning with my tongue bone dry, I can't swallow dry or textured foods as they get stuck in my throat.  My throat is very sore, my glands are up and I feel like I'm choking all the time.  It's not pleasant.

Five weeks ago my GP referred me to ENT.  I chose the first available appointment at Retford Hospital.  Big mistake. I filled out a reflux questionnaire,  the doctor briefly asked me a few questions.  I told him I'd had a dry mouth and throat, that I had trouble swallowing dry and textured foods such as fish or chicken, and that I had narrow sinuses and a deviated septum.  I had to explain what POTS and EDS were.  He scribbled a few notes, he didn't give me chance to explain very much before he took a quick look in my mouth and declared he needed to look down my throat with a tube and he'd give me some local anaesthetic.  I wasn't expecting him to perform any procedures and I was a little apprehensive.

I have trouble with local anaesthetics.  It is well known that Lidocaine isn't always effective on EDS people.  I told him that and he was like, "Do you want me to do this or not?  I have to look in your throat."  He didn't have the greatest bedside manner.  I explained that my dentist uses a plain, adrenaline free anaesthetic.  He found one and squirted it right up my nose. Cue me screaming in agony and my eyes watering like crazy.  I told him it burned, he told me it shouldn't burn.  It was a big shock to  my  body and I got rather shaky.  I was asked to sit in the room next door while the anaesthetic took effect but the shock and the pain triggered my POTS symptoms and I did my usual 'walk three steps and keel over' routine.

I didn't black out but the nurse tried to catch me as I slid down the door onto my knees.  There was some shouting, other people came in and sat me on a chair but I felt dizzy again and my vision greyed so they laid me down on the examination table.  They fetched a blood pressure monitor and said it was fine.  D'uh!  It normally is when I'm laying down!

They left me for a couple of minutes then a nurse came back with a form and said they wouldn't be doing the procedure today but they wanted me make an appointment for a barium meal swallow x-ray.  I asked why, it's got nothing to do with my dry mouth, swollen glands or sore throat.  She said it was because I had trouble swallowing.  The doctor had totally misinterpreted what I said about my swallowing problems.  The appointment had not only caused me pain and a flare up in symptoms, it had been a total waste of time.

I asked if they had any saline to wash my sinuses but the nurse said they didn't have any.  Yes, I was in a hospital that doesn't have any saline!  I was super weak and dizzy, my heart was beating like crazy and my nose was still on fire from the toxic Lidocaine but they let me go home.  Actually they asked me to make another appointment but there is no way I'm going back there!

I came home and phoned 111 (the new NHS direct number).  The nurse wanted me to go to A&E because she thought I was allergic but based on previous negative experiences of our local hospital I've decided to sit it out.  Three hours later and I still feel very shaky, I have fallen over a few times through POTS dizziness so I'm going to take it easy and take stock of everything before I write a very strongly worded complaint about the ENT doctor.  I appreciate he only wanted to examine me but something as simple as listening to the patient can often save a lot of pain in the long run.


I just Googled the side effects of Lidocaine spray.  They include:

  • Irritation at the application site
  • Dizziness
  • Drowsiness
  • Low blood pressure
And it should be used with caution in people with damaged mucous membranes, hypovolemia and poor general health.  So in short, it's not a good thing to give it to people with POTS!

Monday, 17 February 2014

Austerity by stealth

Way back in 1997 I started on a Social Services scheme called Direct Payments.  My health was getting worse and I was struggling to look after myself and my home, so I asked social services for assistance.  At first I was denied any help at all because it was, and I quote, "Not essential to clean your house."  Yes, seriously, housework was deemed an unessential.  

I complained and I was eventually assessed as needed help.  Instead of sending a home help or carer out to me I was awarded a package of 10 hours and given a regular amount of money to be spent on meeting my assessed care needs.  I employed a care agency to take me out of the house in my wheelchair and do my cleaning and laundry.  My condition became more manageable as I could pace my activity and I wasn't stressing about the pile of dirty dishes in the kitchen or getting depressed about being stuck in the house on my own.

Over the years my health has deteriorated, my responsibilities have increased through having three children and my care package has increased accordingly.  Currently I use my direct payments money to employ a personal assistant, a cleaner and a child minder to take my children to school.  This arrangement works very well, it means I can keep on top of all my chores, manage my condition and even leave the house once in a while to go to the shops and do all those little things that fit and healthy people take for granted.

Last year a social worker came to the house to do my annual review.  It's usually a formality, my condition hasn't changed, I still need the same amount of help so that's that.  Except it wasn't.  Budget cuts and new assessment software meant I had to have a full assessment, but because I don't need help with personal care (ie washing, dressing, eating etc.) my budget was calculated as £0.00.  Yes, nothing.  I appealed, had a rather challenging meeting (especially considering I had a fever and was shivering like mad) and my existing package was reinstated.

Fast forward to this year and I get a call from a different social worker who wanted to do my annual review.  Let's just say it didn't go too well.  Apparently I'm not allowed to pay a cleaner to do six hours work a week because policy says I can only have three.  That's three hours a week to do all the household chores for a family of five, including cleaning, laundry and food shopping.  

Have you stopped laughing yet?  Well I've got another funny for you.  I'm also not allowed to have someone go with me to medical appointments because that need is met by DLA.  I claim Disability Living Allowance Higher Rate Mobility which I use to lease a Motability car.  It's a fantastic scheme but unfortunately the nice Renault Grand Scenic on my driveway is not capable of getting my mobility scooter out of the garage and putting it in the car, or driving me an hour to Sheffield to see my specialists and physio, or opening the door when I need the toilet or going to the cafe and buying me a bottle of water when I'm tired and dehydrated, or any of the other things I need help with when I go to a medical appointment.

I really wonder who makes these policies.  The social worker said the County Council have to cut several million from the budget.  It's rather convenient that they take that money off the people who are least able to challenge it.  I wonder how many cuts the top level managers are suffering?  Are they allowed to have more than three hours a week to clean their lovely homes?

I've got to wait to hear the result of my review.  If my package is reduced I'm going to appeal, but right now I don't have the time or energy to deal with this.  My health is pretty poor at the moment and I need to get well enough to start physio next month.  Stress is not my friend so I'm trying not to worry about it, although it's always nagging at the back of my mind.

Fingers crossed!

Monday, 3 February 2014

You have to laugh sometimes!

On Friday I went to my GP and before I'd even sat down she said she was a bit bemused by something on my computer records.  I took a look and there it was on the screen:

Ultrasound 6/40 Viable

My GP asked me if I was pregnant and I burst out laughing.  I said it was very unlikely considering I had a hysterectomy in 2010!

The surgery has never been very good at keeping records, letters can take two weeks to get processed (that is if they aren't lost, filed in the wrong place or shredded before anyone has the chance to read them) but this takes the biscuit.

I assured my GP I was NOT pregnant.  She presumed the ultrasound result belonged to someone with a similar name and had been put on my record in error.  We had a laugh about it but it didn't fill me with much confidence.  What if it had been something that needed urgent attention?  It doesn't bear thinking about.

I know I moan about my GP surgery a lot but they did redeem themselves this morning with their efficiency.  I had a blood test done on Friday to check my vitamin D levels.  It's Monday today and the surgery just called me to say they were 24 and should be over 75 so a prescription for Adcal D3 has been left for me at reception.

I've had low vitamin D before and I'm in two minds about taking the medication.  A couple of years ago my level was 14, which is classed as deficient, and I had to chew the chalky 'fruiti tutti' flavoured horse pills every day.  They didn't make me feel any better and when I was retested and found to have normal levels I stopped taking them.

There is much debate about vitamin D on the internet, some say it is best absorbed from sunlight, not that we're getting very much of that in England at the moment!  Others say it's best in liquid form.  I have no idea what to do so I think I'll give the pills another try and do a little more research.

One other thing.  I went to see my GP about the carpal tunnel testing, I explained I had numbness in my little fingers and she agreed with me that the problem was likely to be with my ulnar nerve and not carpal tunnel as the doctor from Stanmore suggested.  So I don't have to wear the wrist braces but I do have to have the same nerve conduction tests, which I'm not looking forward to, but at least I'm moving in the right direction.