Friday 28 February 2014


Well yesterday was rough Nurse Frankie was right about that! The fatigue from not being able to catch my breath properly meant by the time hubby got home from work at 7pm I was already dozing on the sofa.

I felt fine on waking this morning, I had had around ten hours sleep ( those hours are interrupted with toilet trips and fluid intakes, so I never actually sleep a whole night through. I can't remember the last time I slept all night). As the morning progressed I noticed that on changing direction I was becoming dizzy as the hours have slowly ticked by the dizziness and feeling faint has progressed to the point where the only safe place for me to be is in bed. So here I am on rare disease day stuck in bed. Oh the irony!

My mood is low, I'm hormonal and steroid bitchy not a great combination! I've now been really sick for 18 days with a period of a week before that being mildly sicker than I normally am. So my normal routines and activities have been curtailed for 24 days. It may not seem like much but when you've fought so hard to get where I was 24 days ago it feel like a massive smack in the face.

This was all triggered by the Tilt Table Test on 4th February,   ( im getting confused between the TTT and a drs appointment  the TTT was a Tuesday the drs appointment was Friday 7th) its now 28th February and I'm not improving as rapidly as I would like. The last two days have been bad as for a few days prior I had made some big improvements. I'm not back to where I was before this nose dive but I was making great advances towards it. The last two days seem to be my bodies way of telling me it was too much too soon. So here I am again feeling faint, dizzy and stuck in bed. Grrr!

Its going to be a long boring day as hubby is on a late night, all my friends are working and doing normal people things. I here alone bored out of my mind. Too sick for a visit yet sick of my own company and the dogs arent great conversationalists! So I'm boring you rigid instead.

Its now a rest / nap time for me. Fingers crossed tomorrow is better xx

Thursday 27 February 2014

Feeling a bit frustrated!

I always try and make my blog posts funny / sarcastic rather than a pity party. If you've read my previous posts I very much hope you see that. I've been accused by people that I thought were sympathetic as always moaning. I don't think I do moan unless its a particularly bad day. Unfortunately there seems to be a whole run of them at the moment.

Nurse Frankie as we've started calling our boy doggie knows that today is a rough day. Every time I step into my bedroom he's making himself comfortable on my bed and looking at me sternly! As if to say " you should be lying down". I know I should be but after over a week in bed and getting legs like a new born deer for my troubles I don't want to be there. Going to bed is like cutting myself off from the world. I have the internet, phone,TV and radio to keep me company but downstairs is where the real world is, not that there is a great deal going on but that's where normal, non sick people spend their days.

So this morning has been rough I'm short of breath, mimicking a fish taken out of water. I'm hooked up to my oxygen concentrator again something I had managed to keep to afternoons. The steroids have thrown my menstrual cycle into a spin and I'm like a bitchy bear with a sore head. Patience, tolerance and the nice me have taken a holiday.

I joked with my mum this morning that waking me up should come with a warning, its like poking a bear with a stick! In the last two nights I've been woken from sleep on numerous occasions by people who should know better.

When I make friends I tell them don't contact me after 730pm as I'm likely to either be asleep or on my way there. I'm quite open about the fact I have the sleep routine of a small child. Contacting me after that time means you may get utter nonsense as a reply or aggression ! Its been so bad the last two nights that I've switched off my phone and my tablet so that I don't get disturbed. I get mean with sleep deprivation and that's how I'm feeling today. Despite nearly 12 hours of sleep I'm exhausted I could cry quite easily just with the frustration of it all.

It sometimes feels like a complete lack of respect, a large smack in the face when someone you know you read the sleep riot act to still persists in texting you or messaging you on facebook after the curfew. Ok some nights I'm up until 2am or don't sleep at all, if I'm posting on facebook past 8pm then I am indeed awake and its fine to contact me. If there's been radio silence then I'm probably out like a light! As I said I get mean and miserable when my sleep is interrupted!

So that unfortunately is a bit of a rant rather than a blog post of any medical use to anyone! It had to be said. From tonight onwards the phone and my tablet are being switched off when I settle down to sleep. I'm not ignoring you I'm listening to my body to ensure I don't nose dive any further. If you know me and care about me you will understand that. If you don't well that's up to you to decide!

Wednesday 26 February 2014

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.