Hi everyone,
Hope all is well with you all, I have soooo much to catchup on its been too long - for that I can only apologise.
Some people know that my blog used to be open for anyone to comment freely on but this was abused by someone and as I result it knocked my confidence and stopped me feeling I could be as open and honest about everything that has been going on without the fear of this person continuing their messages etc - I have swapped to comment moderation for this purpose so I can Still see any comments but can moderate them before they appear on my wall. I would hate anyone to feel they couldn't start a blog of their own for fear of the same and will now continue blogging in the open, honest and frank way i always did before it all started.... So here goes nothing!!
Some folks who know me personally know I am a Christian, I have been tested to the extremes in recent years. Everything felt like it was falling away like ice melting on a glacier. I worked hard and everything I achieved meant nothing as it slowly crumbled away. I wasn't sure what to do, lost my job as I was so poorly much of the time and they got fed up of it. After that came the stark realisation that I had lost my job and still had a mortgage to pay. Blind faith (and possibly an element of denial) got me through.
Its continued over the last 3 years to get steadily more difficult to do thing - lack of physical conditioning, not in a routine I did try to convince myself it was anything other than what was really happening - possibly didn't want to believe things were as hard as they were at times - was told I needed a stair-lift and turned it down as - it was my only form of physical exercise etc etc... And so the cycle continued I would at times sit on the 3rd step and cry for an hour as it felt too much to get up the 13 stairs I had - every step hurt. But - I kept going believing things could only get better.
They didn't, I had an accident which set me back by leaving me virtually bed-bound for almost 3months - I recovered and started doing revision and the mountain of coursework I had to do for uni. I did my exams (and miraculously passed 2 out of the 3 - bring it on!!!) Just got coursework to complete for the 2 i passed and 1 other module now... I'm very far behind my peers, They are almost finished and I'm barely started. The credits I can get from the last 12 months will go towards the new style MSc in Biomedical sciences. More fitting I think except that i cant do specialism I would like (thankfully the units I will carry forwards are this subject :)) I wasnt able to start the new course this september as true to form straight after the exams I ended up in ICU!
Since the end of August to the beginning of November I was in and out of hospital. With progressively worsening symptoms. My skin kept ulcerating and was chronically infected - my kidneys and liver started to play up, at one point I was yellow whilst in hospital. My legs were really weak and kept going from underneath me leaving me in the situation where I was and still am currently bed-bound till I get intensive domicillary physio. It didnt stop there - Dermatologists felt I needed further investigations and I found out I have a progressive auto-immune disease.
I have cried too many tears to count recently. I always wanted a family of my own, I see my dear brother with his wife and two gorgeous boys (yes I have a new nephew :) he is so cute but i have only met him once in his 6 months so far - hoping to see him soon as really want to be able to get to my family at christmas!!) I love my family dearly - and think my brother is the best-I have 2 gorgeous baby nephews but I do feel a tinge of sadness too at times when I see him with his little family and realise I may never have that - I may be lucky to find a partner who can deal with things - it seems to always be a stumbling block at the start that never seems to get overcome in any potential relationship - and it tires me when every man I do get close to would like to 'stay just friends...' I want to share my life with someone, whther it be a long or a short life - I just want someone to share it with.
Anyways the new diagnosis I have is to be confirmed in the next few weeks but the doctors anticipate I will gradually become more unwell. now require NIPPV (non-invassive possitive pressure ventilaton) at night to assist my breathing and have an archaeic machine the hospital gave me for this! I am now also on long-term home oxygen anywhere between 1 and 5 litres per min 24 hours everyday dependent on my blood oxygen levels keeping them above 90%. This is sadly not the only change I have had to get my head around. I have a repeat scan (CT) of my chest in 6 months if my condition has deteriorated further they may consider other options - further chemotherapy drugs maybe needed to supress my over-active and very naughty immune system from destrying any more of my organs/tissues. Im currently on high dose steroids and low dose chemo so there is some room for manuvor Im totally terrfied though.
My thoughts vary throughout the day to trying to stay possitive and keep doing my uni work in the hope next september i can restart my course.... I also have my disabled student union rep position to keep me focussed on what other students are having difficulties with/need help sorting out and what adaptions our union may need to do to make the union/uni more accessible etc... I like having stuff to do its been helpful as a bit of a distraction for me on the days i have felt okish and my mind has started to focus on the bad things that are happening.
So that was my first post in a while. I will continue to be as honest and open about the things that are happening here, and will try and be a better blogger too.
Take care everyone and I will post again soon, GP calling me every few days to see how things are going with the NIPPY and stuff so I am lucky to have her keeping such a close eye on things and have her support too.
Speak again soon
lv Rattles Xxx
