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!

Palpitations, arrhythmia – heart stuff!

Since my nose dive early February I have been experiencing the worst palpitations I’ve ever had. I have the feeling of my heart pounding for hours on end, before the nose dive it was just a few minutes numerous times a day particularly on exertion. Its new to me and new is scary especially when I’ve been told I have an arrhythmia.

The arrhythmia was discovered during the tilt table test last month. I listened to my consultant as he stroked his beard and said over and over again “wow, I’ve never seen this before”. When I asked him what he was referring to he said during the tilt my heart never sustained a rhythm but went all over the place and my blood pressure never steadied. It dropped and rose all over the shop. It didn’t seem that surprising to me as I’ve witnessed it on hospital equipment and my own medical equipment. I actually went into hospital due to the weird heart rhythm in May 2011. As it was a bank holiday and my condition wasn’t acute they decided to release me with a promise of a follow up to a cardiologist something that never happened.

Bank holidays are never a great time to be admitted into a UK hospital as their are fewer nursing staff and even fewer drs. The Dr that saw me admitted he had spent 30 minutes googling my condition before he came to see me. I really hate the fact this is a rare condition and most drs course of action is to just leave it alone or wait and see. That’s because both of these approaches do nothing to help me. Hence my reticence now of going to hospital when things get rough.

A worrying development on the palpitation front is the new style ones, which can only be described thus, I feel like there is a balloon expanding in my chest the feeling goes up into my throat and then makes me cough several times. I will be honest I’ve had these in the past too, mainly when stressed out. However these are also happening several times a day. Although they take seconds to end they leave me feeling dizzy, fatigued and with a horrible ache in my chest. I think I need to call my gp about this on Monday and let him freak out about these as well.

I just wondered if any of my readers had also come across these horrid little things as well? I would be most I interested to hear if any of you have. I will of course update you on any progress I make towards seeing a cardiologist.

 Presently my gp is waiting for me to have the drug trial in April before referring me to see the cardiologist, those in the UK will know that what he’s actually waiting for is the change in the financial year now that the budgets have been handed over to the gp’s.  A good gp he maybe but budgets are tight and its not currently considered an emergency. Things may change after Mondays phone call!

I’ve been gone a while

I am sorry that again I’ve been gone a while, well actually over a year. Sometimes I couldn’t face typing out what’s been happening in my life as the act of typing it out would some how make it more real.

 Other times the blog has left me feeling exposed. On facebook on the whole I can choose who I share the information of my life with and delete and block those who are unsupportive, fake or just rude. With my blog my soul is bare to the world.

I’ve decided I need to continue with my blog and now have it set up on my tablet so I can update it whenever and where ever I like.

My story and others like mine need to be heard even if it is just by a select few, maybe no one? At least if I co tinue writing I can’t be accused of not putting the information out there.

In the last year or so my health has declined rapidly. On February 7th 2014 I had another tilt table test but this time with glucose loading and its sent my health into a nose dive. This tilt table test revealed more than Pots ( postural orthostatic tachycardia syndrome) it also revealed Orthostatic Intolerance ( my blood pressure drops on standing), an arrhythmia ( my heart never stays in a rhythm but likes to disco dance its way through the day), post prandial hypotension ( my blood pressure drops after I eat and I black out) and at the end of the of the test my consultant told me I have severe autonomic dysfunction – that was never said during the 2011 tilt.

I have been booked in for a drug trial in April this year. The drug is called ocetreocide and its the last chance saloon for me. The ocetreocide will be injected three times a day before I eat in the hope that it stops / reduces spleenic blood pooling ( too much blood being diverted to my belly after eating). It can have some nasty side effects but if tolerated by me it could make a difference. On the second day of testing  if I’ve tolerated it then I will be taught how to inject the drug myself.

I’ve tried all the usual drugs Fludrcortisone ( triggered migraines, Ivabradine dropped my blood pressure too low and midodrine stopped me being able to urinate properly and also gave me really awful stomach pains. I’m still on my salt tablets and they’ve been increased to the maximum dose after my nose dive this month. Eight of those beauties a day!

I’m also back on the fludrcortisone so far so good. Its made a small improvement as I can now get out of bed for a few hours every day. For over a week I was bed bound and hubby had to take time off to look after me. So its been a definite improvement. The side effects so far have been fat ankles, fat hands and puffy eye lids but I can put up with them if I’m not stuck in bed all day!

Last year I had a few investigations performed as my eye sight was awful continual ptosis ( right eye shut constantly) nystagmus ( rapid uncontrolled eye movements) it was a great deal of fun. I had to be seen by a neuro opthalmologist one of the rudest doctors I’ve ever met. Who treated me like all I was after was a myasthenia gravis diagnosis. To be honest I’ve gone past caring if they diagnose it or not. I’m sick of the whole MG thing and the neurology department!

I also had investigations done for my bowel adhesions as my stomach pain increased and made eating impossible as it was so painful. I ended up on liquids only and lost 2 1/2 stone in weight ( 35lbs). It was needed as I wasn’t svelte and I’ve pretty much managed to keep the weight off. Getting down to a UK size 16 for the first time in years! See every cloud and all that!

So that’s a quick summary of where I am at the moment although I forgot to add I’m also having breathing problems so I’m using my oxygen concentrator most days.

Again sorry that I abandoned this blog.

My Latest Adventure Part Two

Sorry there has been a bit of a gap between postings. I had hoped to write part two yesterday but I was so exhausted I only briefly went on the lap top yesterday. Basically out of 24 hours I was awake for 8 and out of bed two. Thank goodness hubby took the day off work yesterday to look after me I was fit for nothing.

So last night I slept for 13-14 hours, I would love to report I woke up feeling as fresh as a daisy but I didn’t, I felt like an extra in the movie night of the living dead. I thought a cup of tea would wake me up, it didn’t! I am actually more awake at 2030 than I have been all day! I hope I can still sleep tonight.

I just need to say a quick thank you to the following people for their messages making sure I was OK, ASL, SE, YC, EG, AF, AK, TMT, JH, ST Rachel and Hilary (and probably a few others that I have managed to forget for which I am sorry). I am OK I am just doing a Rip Van Winkle impersonation at the moment!

I can’t remember if I told you that they asked – the ambulance crew- if I had been taking elicit substances! I did have a chuckle if I had been doing coke or speed I would be a good deal thinner than I am. I also got asked if I had drunk a lot of coffee or red bull. All perfectly reasonable questions and logical but I can no longer drink coffee as it makes me sick, I have no interest in drinking red bull and I limit the amount of cola I drink as that makes my tummy hurt. So there were no obvious reasons for my spontaneous tachycardia.

In Majors I was monitored continuously my heart rate dropped below the official 100bpm that signifies tachycardia and stayed in the 90’s which is still too fast but is considered the top end of normal. Any movement even just flicking my hair out of my eyes was making it jump to 110 bpm. Because I was on complete bed rest I knew that my heart would slow down of its own accord, that’s fine but what do you do when you get home? Life is already severely limited for me I don’t want to become completely bed bound.

I had a chest X ray and that was clear and my bloods all came back clear for infection. So with the clear ECG there was no obvious reason for my heart to decide to disco dance. Thank fully being confined to bed was easing the chest pain. The only pain I had was my arm being crushed every time the automated blood pressure cuff went off. My blood vessels are so fragile I have vertical lines of blood blisters where the cuff has been.

At around 1630 I got admitted onto a ward, not a good one. Its called the emergency medical unit. Basically a dumping ground for people too sick to be released but not sick enough to get straight onto a specialist ward. I was the youngest person there by about 40-50 years.

 As I was wheeled to my bay the woman next door told me to “F**king clear off” and started throwing her personal belongings at me. She obviously was suffering from some sort of dementia, normally I would have been sympathetic and patient but I was feeling lousy and didn’t want to play. I turned to the nurse and said “If I am next door to that all night I will abscond” and I meant it. The woman started throwing the bed side curtain at me and swearing again. I am not proud to say but I lost my rag with her, I felt dreadful, the stress of being next to this abusive woman was sending my heart into the 130bpm range.

 I waited until the nurses left and lent forward and had a few very stern words with her, along the lines of throw anything else at me and I will smack you one. It was a bit more colourful than that and I am a bit ashamed I spoke to her like that but I could see she was eyeing up her folder of nursing notes as her next missile and that would have hurt! My talking to her actually worked and she went to sleep. Around 30 minutes later an ambulance crew came to her and packed her up taking her to the nursing home. As she left the ward she turned the air blue with her swearing!

Just as I thought it would be a bit quieter a woman called Una, who was in the bed diagonally across from mine came up sat on the end of the bed and asked me what train I was waiting for. I started laughing as I hadn’t been expecting that one and told her it was the London bound one. She told me she had been waiting for a train for ages and that her husband would be worrying about where she was. She was all over the place as some of the time she said she was 7 years old and that I was an old lady and then the next minute she was talking about her husband. She wasn’t aggressive or violent she was just confused and scared. I could cope with that, I couldn’t cope with things being thrown at me when I was strapped up to a monitor and couldn’t move.

I don’t know what is happening with this post but this is the third time I have had to edit it due to disappearing paragraphs!

To cut a long story short Una decided to pretend to take her meds and then throw them behind her bed when the nurses and care assistants left. I informed the nursing staff about what she was doing. When they moved her bed they found a pile of pills on the floor.

Una wasn’t aware that I was the one that had given the game away or she didn’t appear to realise. I didn’t hide the fact that I was telling the nurses. They were much more diligent when they gave her the replacement tablet. She was observed taking the tablet and then made to open her mouth and lift up her tongue. I have the feeling that Una was just terribly lonely, every time she had the opportunity to get some attention she went for it. She refused to eat so one of the nurses fed her, she refused to drink so a nurse helped her drink. She was capable of doing both, how do I know? I watched her help a very ill lady by feeding her and helping her drink. What ever her motivations Una was fundamentally a nice little old lady and a bit of a wily old bird. It was entertaining.

By 1900 I had had enough. I saw a Junior Dr and explained to her I felt fine and that I should be discharged as they would do nothing over night other than observe me and release me in the morning. I told her I could do the observations myself and that they should refer me as an outpatient to cardiology to have a Holter Monitor fitted. She seemed quite amused that I came up with my own treatment plan, but I knew that would be the only way I was going to get discharged! Within a few minutes her boss came over and he said he agreed with my plan and that I could go. He then spent 20 minutes talking to me about autonomic dysfunction, he also told me he felt that I had ocular myasthenia gravis. I had met this guy in 2009 and he wasn’t particularly pleasant towards me, he was obviously under the impression that there was nothing wrong with me. Now I have a diagnosis, it maybe one that he had never heard of and he had to google, I am a proper patient. He informed me that he thought I had wide spread problems with my autonomic nervous system. I was quite taken back as normally the Dr’s I deal with treat me with such disdain and with a complete lack of respect. This trip to hospital had been a bit of an eye opener!

My Latest Adventure!

Sorry I haven’t posted since Friday but I have been very unwell culminating in me being admitted to hospital yesterday for a few hours.

I was pretty exhausted after all our Royal Wedding fun and to be honest it was a price I was willing to pay, just to have a bit of fun for a change! Friday was wonderful but I don’t know if I want to go through the last three days again. Everything with me has to be worked out in a kind of profit and loss way. One day of enjoyment (profit) may amount to several days, sometimes weeks of ill health (loss). Unfortunately on this occasion I hadn’t estimated the amount of loss I would have.

Saturday morning I woke up feeling pretty rough, which was totally expected. I hadn’t slept very well due to the sheer amount of adrenaline floating around my system. I had about 6 hours sleep, when I normally get between 9-12 hours. Anything less than that and I find it incredibly hard to function. I decided that Saturday would be the day that I would catch up with all my TV programmes that I had recorded over the last few days.

On Saturday afternoon I started to feel quite strange. My chest really ached, I felt very dizzy and a bit shaky. I drank loads of fluids and eventually decided that I better go to bed and have a lie down before I fell down. On climbing the stairs all I could hear was my heart thumping away and I became extremely short of breath. On getting into bed and pulled my pulse oximeter from my bedside drawer and took my pulse, it was 170 beats per minute (normal is 60-80 beats per minute) my oxygen saturation was 95%. No wonder I felt so ill, the pain in my chest was more uncomfortable than sharp and the pain wasn’t travelling along my arm or into my jaw so I wasn’t overly concerned, just a little perplexed. As I lay in bed I became acutely aware that my heart rate wasn’t going back to normal (for me is between 70-80 bpm). I had palpitations and I could still hear my heart whooshing in my ears. I measured my pulse again and it was sitting at 115 bpm.

Over the next few hours I measured my pulse every 15 minutes or so. It was still in the hundreds and any movement – even turning in bed was making it jump to over 120 bpm. I knew in my heart of hearts I really should be calling the out of hours Dr’s but as me and the medical profession don’t see eye to eye…….(see previous posts to get accounts of prior encounters and you will understand why) I decided to leave it and see what happened. After about 3 or 4 hours my heart rate dropped into the 90-100 bpm range. This was good but what was concerning me about the tachycardia (that’s a heart rate over 100bpm) and the high normal pulse was that it wasn’t settling into any kind of rhythm. It was dancing all over the place, one second it was 82 the next it was 110, the next it was 93. Normally when anyone takes their pulse its at a nice steady rhythm, maybe just going up or down one or two beats not 20 or 30. It literally was dancing up and down before my eyes.

So I did what anyone wanting to avoid a trip to hospital would do, ignored the readings and changed the battery in the pulse ox. The readings didn’t change so I changed the batteries again. I got the same readings. So I then used my blood pressure monitor to check my pulse. It showed again that in a space of a minute my pulse was bouncing all over the place. I decided that the best course of action was to go to bed and await hubs return from work. I convinced myself that if I sought medical help I would be told I was having a panic attack. I was too tired to put up with that kind of nonsense and after all a good nights sleep may sort everything out.

Sunday was a repeat of Saturday, except now I had hubs and mother pleading with me to call the out of hours Dr’s. Mum said “what happens if you black out?” to which I responded “I won’t be able to stop you dialling 999, but until then I’m leaving it”. I just made sure that I was with Hubs at all times and rested as much as possible. Again I knew really that this was an incredibly stupid thing to do but I can be very stubborn and I really didn’t want to cause a fuss.

I emailed a few people asking their advice. Their answers weren’t what I wanted to hear so I chose to ignore them. I googled tachycardia and inappropriate sinus tachycardia and found that a lot of people with postural orthostatic tachycardia syndrome also suffer with IST (inappropriate sinus tachycardia). IST isn’t pleasant but it isn’t life threatening, although it can lead to angina and a few other nasties. I was reassured but I didn’t know how much longer I could put up with a dancing heart. It was exhausting, making me nauseous and the chest pain was getting a bit more intense. I decided as all ostriches do, to bury my head in the sand, have a good nights sleep and see what happened in the morning

I rang the on call Dr’s and spoke to an extremely useless woman, after asking me if I was the patient she proceeded to ask if I was conscious! I bloody hope so I nearly replied. I know they have to read off a script and ask the relevant questions but If we have already gone through the fact that I am the patient I have given you my date of birth and my address then its pretty obvious I am conscious! The woman had real difficulty grasping what I was telling her so I dropped the word tachycardia and told her my heart was beating too quickly and that I had chest pain. Once she had finally understood and I would like to make it clear I was dealing with a foreign call centre where this kind of problem happens on a regular basis, I was informed the Dr would call me back within 20 mins.
I gathered all my regular medication together and wrote a list of it also. That’s quite a feat in itself, my regular meds fill a small carrier bag. AF told me to pack a bag, to which she received a dirty look and then she shut up. I told her I wouldn’t be staying and would see her when I got back from the Dr’s. With that the phone rang and It was the Devon Ambulance service. I was a bit taken back as I had thought I would get the Dr on the phone and he would tell me to meet him at the local hospital and get an ECG done.

I gave all my details to the Ambulance service, who were lovely and very kind. They informed me they would be sending around a paramedic to assess me and that an ambulance would follow. This would be a spectacle for the neighbours! I walked down stairs very slowly and informed hubs he better get ready to shut the dogs in the kitchen as we would be having visitors, only to look outside and see that the paramedic was already on the door step!

Much amusement followed as somewhere along the lines some one had reversed my age to 73, not 37 so the paramedic was a little surprised to see such an elderly woman in good nick. My husband assured him I had cost him a fortune in plastic surgery. The paramedic was brilliant and calmed me down. Unfortunately my pulse was bumping along at 103 and various other numbers in the hundreds. I explained what had been happening and the paramedic said “its no wonder you feel exhausted its like your body has been running a marathon for the last 3 days”. He treated me so kindly and with such respect, its the first time in a long time that I have received treatment like that from a paramedic. Usually I am treated with disdain and that I am a time waster. Unfortunately over the course of the last 4 years I have had many unscheduled trips to hospital in the back of an ambulance, once with the blue lights flashing!

After taking all my obs it was decided that a trip to the larger hospital in my area was called for. Everything bar my pulse and temperature were normal but I did need an ECG to ensure that something more sinister was not occurring. After 3 days if something sinister was happening I would have done quite a bit of damage to my heart muscle. I was pretty sure that if I was having a heart attack I would know about it, this was uncomfortable and causing extreme fatigue, but I wasn’t that sick and really didn’t want all this fuss.

The ambulance crew arrived and again they were lovely.The paramedic and the ambulance paramedics all admitted they knew nothing about POTS but would be going home and googling it. They all said it was a learning experience for them as they had never encountered someone with this syndrome before. As soon as I was in the back of the ambulance I was attached to an ECG machine and a pulse ox. We took a leisurely drive in, much to the annoyance of the paramedic sat in the back with me. He took me through the ECG reading and said it was absolutely fine it was just my heart wasn’t in a set rhythm and was going a bit too fast.

When we got to the hospital I was taken through to majors, I never ever end up in minors and haven’t got a clue in what that part of accident and emergency looks like. I have ended up in resus before but thankfully at the time was so ill I didn’t have clue that’s where they take you when there is a possibility that you might die. When AF told me afterwards I was in shock for a few days!

It was quite amusing at the hospital as the ambulance crew wouldn’t take the pulse ox off me which is very unusual- they like to keep hold of their kit. They said to me they wanted everyone to see at the point of hand over exactly what my heart rate was doing and what happened when I had to stand to move from their trolley to the hospital bed. I could have just moved over by sliding between the beds but everyone was so keen to see my heart rate rocket when I stood, I didn’t think it was fair to let them down!

My heart had dropped to around 93 when I was lying on the bed. On sitting it rose to 120, a normal persons heart will rise 10-15 bpm on changing positions and then drop back down within seconds. Mine just continued to rise, on standing it climbed to 128 bpm, dropped and then started to climb again. I told them to get the full effect I would have to be stood for longer but I was too exhausted to play along. Impressed with their new knowledge the ambulance crew spoke to every medic they could find telling all about POTS it was quite amusing to watch as the Dr’s and nurses all started to google POTS at the work station! The ambulance crew stayed with me until they had a cubicle ready for me, around 5-10 minutes as it was standing room only in majors. Then both of the crew gave me a hug and told me to get better soon. It was so nice I could have cried, I have never been treated like that before.

I was strapped up to a monitor that measured heart rate, oxygen saturation and respiration rate. As is quite normal for me when I get poorly I forget to breathe so I was regularly setting off the alarm due to it dropping to 4 or 5 inhales in a minute. I promise I don’t do it on purpose my brain just forgets to keep it going, I have to make a conscious effort to breathe. I thank god for the alarm as its the only thing that makes me remember. We have never got to the bottom of why my respiratory rate falls so dramatically when I am ill. I just think of it as another autonomic nervous system dysfunction.

The blood pressure cuff as usual has covered my arm in blood blisters, why am I so fragile? The nurse didn’t believe me until she took the cuff off!

I am so tired that I am going to have to stop here and conclude with another post tomorrow. Sorry but just to let you know I am fine just very very tired!