Thursday 25 July 2013

I Just Dont Get It!!

As you all know I have had my lovely other half with me now for a few weeks and last week it was time for me to spend some time down at her home with her family.

Last Wednesday we were out in town when I had a voicemail from my nan blaiming me for the fact my mum had been rushed to hospital having chest pain and that I had to get back from Cornwall and go and sort her out.

I rang my sister to find out what was going on as I hadnt heard anything other than this voicemail to be called a self bitch for ignoring mums texts and not caring for anyone else other than myself.

It turns out that mum had sent these text to my email accoubt which I obviously wouldnt have got in the middle of town.

This all obviously upset me as I was being blamed for something I hadnt caused. And what if I didnt live with mum. What if I did actually live with the other half in Cornwall. Would it still have been my fault and would I still have been called a selfish bitch!?

I was willing to let all this past as I cant deal with the stress, but for the last week my sister wont speak to my and neither will my nan, to the point that no one is ringing the house phone just to avoid contact. My mum has also been very secretive and going upstairs and shutting doors when on the phone so I cant hear what shes saying and also has only spoke to me when she wants something.

Not exactly fair right!?

I dont know what to do, am I really a self bitch!? Did I really cause this chest pain?! Am I ever going to be able to move out and not get called every name under the sun.

All I want is an apology from my nan and sister for blaming me for ignoring mum and causing her chest pain when one its mums fault I didnt get and text and 2 I cant physically cause chest pain from 100 miles away and having not spoke to her.

Its driving me mental. Do they not realise what this is doing to me!?

TTFN

XXXX

Friday 19 July 2013

About Time It Got Better Dont You Think!?

For me it is more gutting news. Ok so I slightly already new it in the back of my mind or maybe thought it could be that but now it is official. The doctors have diagnosed me and are treating me...I have Steroid Myopathy and I hate the fact it is now reality. For those of you who dont know, Steroid Myopathy is a muscle wasting disease caused by steroids. I have to try everything in my power to keep what little muscle strength I have else i will be wheel chair bound. I am considering a wheel chair now but still debating it as my legs technically still work and im sure if I were to use a wheel chair perminatly what muscle I currently have will be gone for good, and thats the last thing I want. I also have to start a new drug which is similar to steroids but it has no side effects like the steroids. Sadly though this doesnt mean that I never need to take steroids again, every asthma flare up I have, I have to have a big dose again yo get me through. Perfect.

Also as mentiobed before I have been having problems with my hip, well today I had an injection in it in the hope itll sort it out. I have to give it 2 weeks to see if it has made a difference. If not I am being refered to orthopeadics.

Is life ever going to get better, or am I going to have to suffer more and more with these shitty side effects.

I guess on a positive note, I can officially marry my amazing girlfriend who has been my rock these last few weeks. Love you so much!!

TTFN

XXXX

Tuesday 9 July 2013

Sleepy Issues

For those of you who have read my most recent blog you would know that I had a recent admission to ITU with my asthma where I ended up on a special breathing machine but also keeping me awake. This was because I refused full ventilation.

Well, since then (like previous times) I have been having real bad issues with sleeping. Every time I close my eyes it takes me back to that very moment and Im worrying myself with what ifs!? Truth be known Im scared of death and Im scared that one day my asthma will be what kills me and at the wrong time.

All of this is worrying me and Im finding it hard to talk about. My girlfriend asked me last night what was on my mind and what was it that was keeping me awake and I was to scared to tell her. So I said nothing was up. I hate not telling her. I just feel that we cant relate in this department as shes never had to experience it. In the mean time though not only am I getting rubbish nights sleep like normal but I now have this added extra.

Im stuck.

Im lost.

Im confused.

I dont know what to do for the best.

Help!!

TTFN

XXXX

Friday 5 July 2013

Another Scary Moment!!

So I thought I would enjoy my life. Visited my dad for my tea on the Friday and then spent the weekend with the most amazing best friend ever!! We managed a carboot sale that we raised £80 for Brighton Pride at the end of the month so that was ace and on sunday I left and met up with some more amazing friends. By Sunday night, I had just got onto the motorway and I suddenly couldnt breath so raced back to Bristol and got my self into hospital. Sadly I ended up in intensive care on a non invasive ventilator with heliox being pumped into me. They told me that the best option was to b ventilated but I refused it as it is the most horrible thing imaginable.I have to say I am now ultimatly scared about going out and about on my own again. 6 days in ITU and HDU and i was finally allowed onto the respiratory ward. During the week I had some amazing visitors and company to keep my spirits up and the lovely better half had decided to come up on the train and visit me whilst in hospital. Whilst on the resp ward I had lots of input from physios who have told my I really need to slow down as my muscles can take it and neither can my lungs. My oxygen levels r dropping into the 80s when walking fast now so here is the new life of a snail. I have to say I am massively frustraited with how things r turning out. I just want me life back, I want to go exploring not be this frail young person struggling to live a little bit of a life!! On a positive note my link nurse from Birmingham rang me when I got out of hospital to check in on me and also to tell me that they are in the process of writing a very helpful letter to my local hospital to ensure my treatment becomes a hell of a lot better than what it is so I shouldnt b so scared to get help if i need it. I have also been to birmingham gastro team and they have told me I need surgery on my tummy to stop the acid burning my lungs and this will b done in rough 2 or 3 months so another thing to worry myself over for the next few months!! Well thats my rant for now TTFN XXXX