losing what little ground I had gained and a tale of two naughty hounds!

This post was supposed to be about something else entirely but the energy theives visited and I’m stuck in bed!

Since the beginning of February after the tilt table test which I’m now seriously starting to regret having my health has been in a precarious state.

I’ve had a couple of good days in the last month but that’s it. Currently its just constantly lurching from one bad day to the next. Pretty much every day by 2:30pm I’m done, by 4:00pm I’m ready to sleep. I have to try and keep myself awake otherwise I end up waking up after 7 hours wide awake, which makes it a long day if you’ve been up since 3am.

My heart is constantly racing again, on the fludrcortisone my blood pressure has only reached the dizzying heights of 100/61. To tell you the truth I am sick of it.

The steroids make me grumpy and angry. They are wrecking my skin and despite the increase of salt I seem to be constantly dehydrated. Its been so bad that my skin is extremely slow in going back down after you pinch the back of my hand. Everything I drink just goes straight through me.

I will be quite honest I’m feeling miserable!

Now something to make you laugh

This is Frankie lying on our new rug. The day we bought it he wouldn’t get off it. Today he managed to puke on it, he had been eating grass out in the garden which I was unaware of. Whilst I went into the kitchen to make myself a drink he puked bile (bright yellow bile) and grass onto the top corner of the rug. As I am quickly cleaning the rug as hard as I can as I do not want it to stain and the carpet shampooer is in the shed, I hear a rustling in the kitchen.

 I’ve left the cupboard door open in case I needed more cloths or towels.

 I know what is happening, I should have realised this would happen.

Mollie has jumped up and pulled a bag of treats down to help herself being aided and abetted by Willow. This is what my husband and I refer to as a rookie mistake! The thing is I’ve left that cupboard door open countless times and she’s never done it. She’s so sneaky she knew I was too busy cleaning the rug to stop her!

By the time I got back into the kitchen all that was left was an empty wrapper and two dogs making a hasty exit! Ears down and tails between their legs. You have to admire their audacity. If I hadn’t been elbow deep in puke I would have taken a photo!

Here are the naughty girls! Like mother like daughter. I couldn’t be cross for long and it has given me something to chuckle about today!

So glad I have my babies to make me smile! Even if they are cheeky beggars!

Medical terminology – I know I tend to use it a lot!

I know I have an awful habit of using medical terminology to describe my symptoms or conditions. So I thought I would break it down for anyone who is new to autonomic dysfunction or Ehlers Danlos syndrome.

POTS – postural orthostatic tachycardia syndrome ( its full name) This is diagnosed by a tilt table test. You are strapped to a table with a blood pressure cuff and heart rate monitor attached to you. Its usually done in a dimly lit room and you lie flat for 15 minutes or so, so that base lines readings of your pulse and blood pressure can be recorded. Then out of nowhere you are pushed into an upright position to stimulate standing. Pots is diagnosed if your pulse increases by more than 30 beats per minute or goes above 120 beats per minute during the first ten minutes of the tilt. Non pots people have an increase of 15-20 beats per minute and then their heart goes back to normal. Vomiting, fainting and feeling like crap are all quite normal during this test. I ace this test! In very basic terms your body can’t cope with changes in posture and sends your heart mental.

Orthostatic Intolerance / OI – This is a drop in blood pressure on standing and is again diagnosed via a tilt table test. For the first time I demonstrated this on a tilt table test last month. I have no idea what my pre tilt blood pressure was doing but it dropped to 80/40 on the upright tilt. I will be honest I felt like crap, lost my vision but could hear the technician panicking and suggesting the table be dropped back down! As a result of OI  I have to be careful when I get up from lying down or being seated as I can faint if my blood pressure drops ( as anyone would!)

Arrhythmia – A normal heart rate range is between 60-80 beats per minute. Very fit people tend to have slower heart rates of around 50-60 beats per minute. Below 60 and you are entering bradycardic territory above 90 and you are entering into tachycardia country. I can suffer with both. A heart rate that doesn’t stick in a rhythm is also an arrhythmia. Mine bounces around all over the place and is probably why I feel like shit most of the time.

Autonomic dysfunction / dysautonomia – This refers to problems with your autonomic nervous system. Your autonomic nervous system deals with the bodies functions that you have no conscious control over so breathing, heart rate, blood pressure, digestion, temperature control to name a few. Pots/ OI etc are symptoms of autonomic nervous system dysfunction. Why mine has now been classed as severe I have no idea. I was too out of it after the tilt table test to ask!

Post prandial hypotension – this basically means your blood pressure drops after eating. This is a problem I’ve had all my life I just never realised what it was and didn’t bother to do anything about it until it got much worse. After I eat I get very sleepy and I get palpitations. Some days its really bad and I will end up going to sleep / blacking out no matter how hard I try to stay awake. When I come around an hour or so later I am very confused, I think that I’m back at my parents house and I haven’t lived there since 1996 or I think I’m back at our flat – haven’t lived there since 2003. It gets quite frightening especially if my husband is at work as I have no one who can tell me what is going on. The condition is caused by too much blood going into the abdomen to digest your meal. This causes your blood pressure to drop and in turn causes the blackout / faint . I’ve tried all the first stage interventions low carb meals, ibuprofen taken 30 minutes before a meal, espresso drunk whilst eating. Nothing works and out of all my problems its the one I find hardest to live with.

Low Blood Pressure so what exactly is low blood pressure? The world health authority classes it as blood pressure below 100/60 in the UK most drs think low blood pressure is any reading below 90/60. My blood pressure is constantly low, sometimes even my blood pressure monitor can’t read it and displays error! Your blood carries oxygen and nutrients etc around the body. When your blood pressure is low your brain and other organs simply do not get an adequate supply of oxygen. Too little oxygen and you start to feel fatigued, dizzy, nauseous to name a few symptoms and if it goes low enough you will faint ( syncope as the drs call it). Normal blood pressure is anything above 100/60 or 90/60 high blood pressure is anything above 140/80. Everyone has their own blood pressure number that their body likes to function at. I function best when its around 110/80 but I haven’t seen that in a very long time!

Ehlers Danlos Syndrome / EDS – is a connective tissue disorder that effects the bodies collagen. Collagen is the bodies glue, without it you would fall apart. EDSers as we call our selves have faulty collagen its too stretchy / floppy leading to dislocations, partial dislocations, joint pain, easy bruising, gastro problems and a whole heap of other issues.
There are quite a few different types of EDS mine is the hypermobility type. It means the majority of my joints can move way beyond what’s considered normal. For example I can place the back of my head on my back, I can touch my thumb to my forearm, my fingers can all be moved past 90 degrees, I can do prayer hands behind my back etc etc whilst it was fun when I was younger and when I first got diagnosed I’m in constant pain with my joints. Every day is a battle to work out what I can do to redfuce the pain and have some level of activity. Recently after a week in bed I could barely walk so using my joints as much as I can is important to retain functionality.

I’m sure there are loads of other medical terms I drop into my blog at the drop of the hat but I just can’t think of them right now! If I haven’t mentioned one and you want a basic explanation please leave a comment!