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!

2 thoughts on “Feeling a bit frustrated!

  1. So glad you're back! I'm one of the “select few” out there in the face(book)less world. I linked to here from your posts in forums and always enjoyed reading your regular updates. I hope that the octreotide will be more of a magic bullet for you than midodrine and Florinef.


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