Sunday, January 06, 2013

Happy new year

My last post was whilst I was waiting for my TTO's to be done so I can leave hospital.  Things have been fairly crappy since then.
On the Monday I went to visit the physiotherapist who said that the huge pain I have been getting in my ankle is due to Flat feet,   who knew?

When I got back my cat who I have had for 12 years was struggling to breath,  his breathing was clearly strained and was taking his whole body to take one breath, so took him to the vet on Monday   they x-rayed and said that he had a growth behind his larynx which was obstructing his airways.  He suggested either putting him to sleep or getting a second opinion so i went with the option of a second opinion, so he spent the night in an oxygen chamber.  Unfortunately this is the last time I saw him.

The vet kept him in overnight, and then had him on the operating table the next morning.   they couldn't put a pipe down his throat due to the growth but when they did his sats and breathing improved drastically. They could have referred him to a specialist but this would have cost megabucks.  so had to make the decision for the vet to turn him off there and then and not wake up from being asleep.  It was a horrible decision as he was my 'boy'  every time I needed affection or a cuddle he would be there.  He loved be snuggled up to me on the bed.  In the house his sister has taken to looking for him and the others go outside for 2-3 minutes at a time presumably to find him :(

so after Felix went the house went very quiet, he was a vocal cat.

CF nurse came out to the house at the end of my IV course.  My blows had improved a long way and was the best in 12 months. Great stuff thinks me a nice Christmas ahead. After I came off the IV's my body went through a almost cold turkey type feelings,  it was missing something, the only thing that changed was stopping IV's.  then my joints started locking up which wasn't fun.

Just before Friday before Christmas the boiler broke,  Called BG as we have cover with them, they came out that day knowing that both of in the house are disabled and the cold was badly affecting my joints. They then came out Christmas eve  and couldn't fix it, then two engineers on Christmas day, who couldn't fix it, then the Friday after Christmas and still couldn't fix it, eventually referring to the Boiler manufacturer.  British Gas get a lot of stick but they really bent over to get the boiler fixed,  although they couldn't they really tried, just a shame we had all the bank holidays otherwise it would have been done a lot earlier.

Whilst the heating was out we drove down to Sussex for a couple of days,  hoping to visit the in-laws and some friends of girlfriend to deliver Christmas gifts.

Unfortunately two called off due to being ill and the other (my friend) decided to come up the following day to stay at ours for a couple of days so not really worth while.  So we had 26 hours with the in-laws, which was pretty nice, just a shame my GF was feeling unwell.  whilst there we saw her step brother and his kids who had  cold.
We get back home to a cold house on Thursday evening,  we were both knackered.  Friday came with BG engineer failing to fix boiler and then started feeling pooh.  The next day I woke with a massive headcold and a nasty cough.  Boiler got fixed and then sunday I felt worse,  so came into hospital on New Years eve.  It was a quiet new year.

In hospital I am struggling to sleep, struggling to eat,  I'm dehydrated.  and feel really bad.  I didn't do my blows that day due to coughing.  On Wednesday I did them with the physio,  they was the worst they have ever been due to me coughing.  Done them today (sunday) and they are very slightly up.  just over half what they are normally.  :(

So its now Sunday,  day 6 of IV's  I doubt I will be home for at least a week.

Happy new year all.

Friday, December 07, 2012

My 2012 with CF

Firstly as I haven't posted since April this year I will give some updates.
Living with C.F.
Since April I have found myself in hospital, once in June for a week and then continued treatment at home, and then now.  I have come into hospital to get desensitised to an IV antibiotic.  I will be home tomorrow.  Fortunately I am off work until  January so that isn't a problem.
Although work is OK with me being off in December as I have a large amount of holiday left over.  I have had a huge amount of days off in the past year.  in the last 12 months I have had 4 absences with a total of 40 days off,  This is due to the time normally being two weeks.   This is the highest amount of sickness absence in the company that I am aware off.  HR are not happy and have flagged to my manager that the sickness level is unacceptable.  Fortunately I have made the company aware from day 0 about C.F., and that my company is calling out for staff in my area   which should mean that my job is pretty secure.
Because of these absence levels and the fact that I have been struggling with energy levels all the time over the last 18 months I have now officially reduced my hours at work to 4 days per week.  I am hoping that this is enough to keep me working and keep my health up.  I have been working towards this for a few months I have had the company doctor involved and fortunately had full support of my manager.
The other big problem I have had with health is UNI.  last December I was extremely ill and this put me a long way behind in two modules in my course.    Unfortunately I was never able to catch up and consequently failed one module and for the project  I had a deferral due to health.  So I am retaking them this year and plan to do an lot of work whilst off in December.  All need to be finished by March   GULP.

That brings to now.  A couple of weeks ago I was down in Croydon visiting girlfriends friend and experiencing a pagan festival when all of a sudden I came down with flu type symptoms within an hour.  So had a crappy evening and then a couple of days feeling crappy, thought it had gone but hadn't it then went on my chest.  So I had a coughing couple of weeks before coming to Clinic on Monday,  I expected IV's but didn't want to come in to hospital.  Dr. told me that I needed to come in and get desensitised to an antibiotic and then a couple of days observations.  So my father ?! had a phone call on Wednesday at 1pm,  saying message for Flibbles bed is ready on C.F. ward,  then about 4pm the hospital called me to say did I get their message and could I come in for 7pm.
Normally when coming into hospital they say get here for 1pm and you wait till 3pm, so I was hoping that being called in a 7pm would mean that bed is ready.  So we arrive at 7:10,  no staff or bed.  Finally see staff they say the bed is ready shortly can I wait in the day room.  The day room has a couple of very uncomfortable chairs and a settee. after 2 hours my girlfriend had to go so we walked down and got her a taxi.  Back up to day room, feeling sick, in pain and just wanting to lie down.  Eventually I get the room after 10pm.  3 hours.  No food, still hadn't seen anybody.
Get into the room, it is badly laid out as the bedside cabinet is at the far end of the bed.  The desk with fridge is by the bed with table unbetween
Next morning I still hadn't seen a doctor, (apart from on-call coming in for 2 mins about 5am) find out the ward are having a meeting so still no doctors,  eventually senior consultant comes and sees me and we get desensitation started.  This goes well and they all agree for me to go home the next day.

So now sat here waiting for afternoon levels check and then can go home TTO's done.  just a waiting game (again) now.

Thursday, April 19, 2012

Wow. All change.

It had been an interesting time since last blog post.  It has been one month exactly and life has been transformed.

I originally started this blog as a type of therapy for the crap that was going on in life.  It felt like I had screwed up a relationship with a very close and dear friend, And I was trying to make sense of everything and find a life for me again.
Now when N had decided to take C (will now on be referred to as Fuckwit) over me she moved straight in to his, not officially as she had a flat but in reality she stayed there where She was controlled by a jealous twit.  This guy couldn't get over that she wanted to spend time with somebody else and only wanted to be with her when he thought she wouldn't devoted to him, and he was obsessed that the time that N & I spent together, and convinced himself it was an affair despite her not knowing that he was in a relationship with her.  So because of that Fuckwit spent far to much time obsessing about me.  He followed all my forum posts (I have joined many forums in the past), he followed me twitter and then he found out about my Blog and started reading my posts all the time (My blog views went through the roof), Fortunately my blog was telling me that most of my views where using an Android Phone from the Staffordshire region. Fuckwit was effectively cyber stalking me, unfortunately I found this rather comical that Fuckwits life was that sad he spent it obsessing about little me. Because of this and many other issues he drove N away.

After this she moved away from his and I was honoured that she valued me enough to be able to help her out.  She got out of his house and stayed at quite a few places.  This has meant that I have spent a lot more time with her.  I forgot how much I enjoy spending time with her.  Time is very easily spent with her.  I feel we have similar views and ideals.  This is nice.

Last week I helped N remove her property from Fuckwit's house, this has been put into storage until she can work out how life can move on.  Fortunately Fuckwit wasn't there, but his father was there.  He had made implicit instruction that I couldn't go into the house for some strange reason.  However as it was his property I respected that and stayed outside at all times.  His father was a nice guy, a shame that it will be unlikely I will speak to him again.  It made me chuckle that He commented that it was nice to meet me instead of the stories.  This implies that Fuckwit has made me out to be an ogre, however when you meet me you know me.  I don't hide behind any picture's or stories.

One big complication of her life with Fuckwit is that she fell pregnant with Fuckwit.  This has strange emotional feelings with me.  During my time with my ExWife she was desperate for children.  One problem with being a male living with Cystic Fibrosis is that Men are infertile.  The Sperm are there, just the pipe isn't there.  So we had enquired into IVF a few times.  This never came to fruition due to her excess weight.  However here was N, pregnant to a Fuckwit.  Unfortunately last week, N lost her baby at ~20 weeks.  She was a wreck and in extreme pain.  She told Fuckwit via text that she had lost the baby, his reply 'Thanks for letting me know'.  No, hope your OK., no asking if he can help, just a big fat nothing.  Shows that he never really cared for her and only wanted a possession.

Sad Times.

Also last week was my birthday, I had a wonderful meal out with friends the night before.  When I was with my ExWife I could have only relied upon one or two friends.  However for this birthday meal, I had 14 people out with me which was wonderful.  I have CF friends, Car friends and Work friends.  So it was quite difficult to balance the time across 3 distinct groups of friends.  However a nice night was had by all.

UNI wise I am still struggling.  I have spoken to my lecturers and hopefully I can get an extension for my project into the summer time will tell.

So to sum up, I have enjoyed spending more time with N again, realising that we are good friends and helping her to move onto the next stage in her life.  She is the most important person in my life.
Now is the time to go off bowling.

Monday, March 19, 2012


This post is a bit of a downer.  My mood has been very up and down lately.

Over the past few months i have been finding life very difficult.

Currently I am doing the following.

Working 3.5 days per week
UNI 1 day per week.
Thats 37 hours over 4.5 days

I go bowling once or twice a week.

then I have house work, car clean, washing etc.

Now for a healthy person this is pretty easy life.  I should have bundles of energy and going to the gym and going out socialising.  Unfortunatly this really tires me out.
A close friend of mine has told me of the spoon theory.  My understanding of this is that a person has x amount of spoons available in a set time period.  each activity takes a spoon.  As you only have so many spoons available they can run out quite easily.
I feel that at the moment I deplete my spoons just doing some of the above.  I should also be doing UNI work, and having a social life.
This past weekend I went shopping with a friend who came up from London.  After this I was completely knackered and fell asleep on sofa.   The following day I had a trip to the new Silverstone wing arranged.  I got up early and went to Silverstone, followed by a visit to CostCo.  After this a was so tired.  When I got home I ended up wiped out for the rest of the day.

Something has to change.

I can not complete my final year of Uni.  I cannot do the extra work involved to get assignments and dissertation done.
I have spoken to the UNI and hopefully they will allow me to defer the dissertation till next year.  *fingers crossed*
Once I have finished UNI I will then approach my employer and see if I can reduce my hours.  I don't think its a good idea to do that yet as they won't pay me my salary  whilst me only beling there 3.5 days a week.

In the meantime I just need to get the two remaining modules done.

Fingers crossed.

Added to this.  My chest is not looking good.

Hospital within a month.

Monday, March 05, 2012

The slide going down

Typing this as I should desperately be doing UNI work.

My UNI work is falling behind at the moment as I struggle with energy levels.  After I am home from work this is pretty much flaking me out.  And because I am falling behind, I struggle to face up to what I need to do.  I have huge amounts of work to do in the next 6 weeks, I seriously doubt I can do it.  This is causing me to stress and run away from it, which is making things worse.  I am struggling in the subjects.  Not sure if or how I can get out of this, it is seriously stressing me out.

My closest Friend 'N' is preggers.  Congratulations to them.  N chose her boyfriend over me.  I am glad to keep her as a friend.  But as I cannot conceive it was obviously the right choice, I was never going to be enough for her or anybody.  Who wants somebody who is firing blanks.

However in the off chance that somebody doesn't mind a half man I have stepped up trying to meet somebody on an internet dating site.  Currently I have one mad stalker who sends chav speak messages to me everyday.  She keeps expecting dirty comments or talk from me, but thats not me.  Besides I have reservations that she is connected to or knows my ex-family.  She is from the same area they live.
I have started chatting to a teacher who is after friendship.  Hopefully this can continue.

I am feeling extremely low at the moment in my head and this isn't helping my health. I can feel my chest getting tighter everyday.  Hopefully this can change as I don't really want to be back in hospital again.  Unfortunatly hospital is always going to be when rather than if. This is one advantage of living a solitary life outside of work.  When I was with my ex she always was coming down with one infection or another due to interaction with so many more people.  Hence I was picking things up more regularly.   However living life solo I am getting less bugs which is good but not good mentally.  Catch 22 situation.

Short post as must get UNI work done.  

Wednesday, February 29, 2012


Again haven't updated this.  It seems a bit daft sometimes to update when not a great deal is happening.  Thoughts are not of much significance when little is happening. 

Firstly will reflect my UFC Forecast Post.  Didn't do to well there, got three out of 7 bouts right.  Next event was worse, I predicted 2 out of 8.  I know nothing about this sport :)

Thursday, February 16, 2012

Workshy fuckwits

I have been reading on a forum this morning about the unemployed. This is a subject I have great passion about so thought best blog it.  This is today's piss boiler.

There are two types of unemployed. One type is those who have health problems who are unable to work. These type of people generally dislike being unemployed and would do anything to try and get back to work.  These people I fully support and sympathise with.  After all I will end up as one of these.
The other type are the workshy lazy fuckwits whose job and career is to not work and take the piss out the state. They will do everything in their power not to work as they are better off on benefits so why should they work. 
A few years ago I was made redundant from a local technology company.  I was doing the job I loved in the company and industry I loved.  Then the decision came from the states to close down our office.  So was redundant.  I could have sat on my arse to claim benefits. I didn't. I went and spoke to every recruitment company in the industry.  I applied for some jobs 4 times.  I lost count how many jobs I applied for.  I got 3 interviews.  One I didn't have enough experience. One I was in the final two.  The other offered me the job.  This was 170 miles away from home.  I was going to accept this job but was negotiating to get the relocation allowance to be paid in digs as I knew I couldn't move there cause of my wife.  Fortunately just before I accepted the role the job where I was in the final two offered me the role. This was only 62 mile from home.  I gladly snapped their hand off. 
Mean while my father in law quit his job just before I was made redundant.  Told me I was lucky to get offered a job   he wouldn't get off his arse to find a job.  He wouldn't spend hours on the phone trying to speak to all the agency's.  A job was organised for him by my mother in law but he wouldn't go to it as a it was kids wages and b it was 10 mile away so to far.  I couldnt believe that he was telling me I was lucky.

Two years later I was redundant again.  He was still out of work.  I struggled to get any interviews. I was about to start looking for driving jobs or even stacking shelves  just to make sure I working.  He still wasn't working.  This was the time I said to my wife I wasn't sure I wanted to be with her. So a very stressful time.  Yet still managed to get a job.
During all of this I have been fighting cystic fibrosis. And had a cafe that failed. And was studying part time.

And people call me lucky .

With all the financial problems I have now from my marriage I would be better off if I didn't work.  Why do I still work?