I went to see my plastic surgeon today. It was just a routine appointment so I was very lucky to see him himself and not one of his colleagues.

I came out feeling great. I have decided to be assertive this year and also try to make people understand that I am not stupid and do understand what is happening with my body.

We have agreed that I shall stay on antibiotic therapy until after the removal of both the bone graft which is melting away and the titanium mesh which is probably harbouring little nasty superbugs of note just waiting to infect anything they can find as soon as they can.

For most people dealing with osteomyelitis (disease of the bone) it means amputation – as you can appreciate it would be rather difficult to amputate my head!

But ha ha little superbugs, we know what you are thinking. During the next cranialisation I will receive direct antibiotic therapy to all the areas exposed after the removal of as much as they can.

Hopefully by not giving the little bug-gers any chance of escape, I will be able to eradicate this once and for all.

I can deal with a few scars and the overdependence of pseudoephedrine hydrochloride (sudafed) and plan my trip to Ibiza.

Gosh, I feel ill.

Yesterday, I told you that my GP had called my new prescription of Rifampicin and Ciprofloxacin is the Domestos bleach ‘Kills germs Dead’ of antibiotics but it being my first day I was not as wise to what she was saying as I became clear of overnight.

I was awake for hours in pain. Pain in my gut and thoroughly nauseous it was a tough night to get through and I can only hope that the side effects only last the couple of days it said on the leaflet and they diminish rapidly because I really want to kill these bugs. Whatever shape or form they are – I want to say goodbye and good riddance to them.

I have this prescription up until my operation and want to keep at it as I know that they are strong and therefore more able to help me but it is tough.

Day by day it gets harder and harder to be constantly sick with no end in sight. I go to see my Plastics Consultant tomorrow if I am lucky as sometimes I get to see one of his team who are not up to speed on my case and there I will ask for a tentative timetable of how long this is going to go on. I will also tell them my plan to be well for the summer and to get the go-ahead to travel.

Unfortunately I will just be getting through today, today.

So I think that I will leave it at that.

Today I received a little bit of freedom.

I had my Picc Line removed. For those not familiar with these added extra bits of ones person a picc line is a long, tiny plastic pipe that is inserted into one of the veins in your arm and should rest just above the heart and cause no trouble whatsoever and yet give you a means of intravenous therapy.

But, me being me, and things being as they are my picc line was a pain in the butt! Immediately after its insertion on 1st October last year I started getting heart palpitations. Nobody took any notice as this never really happens to anybody else and I was told catagorically that my palpitations were being caused by something else other than this foreign body in my body.

Me being me, sort of believed them but I was completely aware that I had never had any problems with my heart ever before its insertion and now I was unable to walk without getting out of breath and even talking on the phone was an issue.

If I lay on my left side it felt like my heart was going to punch its way out of me and so I spent the next few months lying on my back thinking that the initial infection had now caused endocarditis (disease of the heart valve) and that I was surely going to die.

I am far too trusting and should have insisted that the picc line was inserted too deeply initially but I tend to trust those that no best even though I now know that I should know better!

Anyway, after my referral to Infection Control I once again voiced concern over my over active heart and eventually they listened to me and pulled it out 3cm.

This was a great relief initially but after a few weeks the palpitations or trachycardia as they like to call it increased and I once again saw the pearly white gates opening ominously before my time. It was duly noted and I was sent for another X-ray to see where the end of the line was sitting.

Boy how grateful was I when one of the wonderful nurses took one look at the magnified X-ray and saw that it was still resting close to, if not inside, my heart and once again pulled it out 3cm.

I finally went back to the comfortable feeling that I only had my head issue to deal with as almost all of my heart problems went away immediately.

Last week I was told by the consultant at the Infection Control clinic that they had NEVER had any issues such as mine when it came to picc lines and that I was unfortunate to have had either someone who was not suitably trained, experienced or supervised for my insertion and that I was very unfortunate – you don’t say!

But today the whole line was removed. No plastic bags strapped to my arm. No intravenous therapy for me for the next few weeks as I have been put on a course of oral Rifampacin and Ciprofloxacin to keep me going until my first operation of the year. So I know that I haven’t yet got the freedom to travel the world with my head still attached to my body but I am one step closer and that taste of freedom is, how you say – Sweet.

I love snow.

Over the years I kept missing it and so, although I appreciate the danger it poses with regard to slipping and leaving those less abled stranded, I can’t help but be in pure wonder of the beauty of it and what I really love are the smiles that it brings to children wherever you go (big kids included!)

But what I am so happy about is the fact that this cold weather must be killing germs. After the swine flu pandemic was declared and before the cold weather predicted we were all being warned of the danger of this highly infectious disease. With signs all over the place and the hospitals, pharmacies and GP Surgeries declaring those with symtoms as lepers not to be admitted.

I was finally given a flu jab about 3 days before Christmas after doctors indecision as to whether I was well enough for it and I must say that I have had no ill effects whatsoever.

But before this big freeze there were billboards, TV ads, magazine reports and newspaper articles all predicting our doom from swine flu the H1N1 strain.

They have been snowed under – ha, ha – free from some of the government fear focusing propaganda of the horrid kind and onto reporting that which I am happy to watch. Beautiful scenery of our wonderful country covered in white (I choose not to look at the warning bits!).

Now, apart from those areas that are without gas or electricity, all we have to deal with are moaners. How on earth can the country that used to deal with winters such as this without any of the luxuries we have today just come to a standstill.

How come we are not ecstatic that our country is covered in a layer of protection? In a layer of beauty and in a layer that takes up back to our not so distant past.

It just seems to turn our nation into a overpopulation of Victor Meldrews.

Warning’s here, fear factor there – why are we not all pulling together and rejoicing in the wonder that this weather has given us this year?

It does make me giggle. And that is the type of infectious disease I think we could all do with a shot of.

I have spent the morning reading up on benefits and support given to people with disabilities and I shouldn’t have wasted my time.

There is just nowhere for me to tick the box.

I have a growing hole in my forehead caused by MSSA, a failed bone graft and infected titanium plate and rapidly deteriorating sinus drainage caused by the above.

I self medicate intravenously with Ceftriaxone (1 x per day) and orally take Clindamycin 4 x day. This, in turn, leads to a very upset tummy and I obviously get pain in the bone in and around the affected area. I have also had increasing aches and pains that I am trying to control by cutting out wheat (I think that all the drugs and wheat were fermenting in my stomach). These were so bad that they would wake me up and I could not even lift my arms above my head to take my top off.

I would also have to add that I have at least 2 planned operations in the near future, one to reopen the drainage in order for any infection not to get trapped in my head and the other to remove and replace the infected bone graft and titanium plate

Needless to say that going to any employer and telling them the truth would make me the laughing stock and therefore the need for me to be self-employed (as I am rapidly depleting my own funds and am not on any benefits) is crucial.

So, it being the new year, and me being full of optimism I thought that I would go to see what sort of help I could get to start my own business.

First port of call – Job Centre Plus – They will be able to help me, surely. They are desperate to help people back into work.

What a laugh – I was given a map to the local CAB (Citizen Advice Bureau), A guide to becoming self-employed by the Inland Revenue Service and DLA form (Disability Living Allowance).

I was reliably informed that my local CAB office would be open at 14.30 that day (how lucky!) and I still happily waltzed along to see if I would be able to get an appointment.

When I got to the office I duly took a ticket and sat down. I read all the paraphanalia that I was surrounded by and found out that my ticket was a ticket to make an appointment and after waiting 3/4 hour for the reception had to give up and go to collect my son from school.

I had previously tried to get through to the CAB office by telephone and had come to the conclusion that it just was not going to happen. But I refuse to be made miserable and I refuse to give up.

Having gone through all the trials before – I choose not to get angry or scared by the authorities or powers that be this time and this is one of the reasons that I am writing everything down. It is my escape and I also know that I will come accross so many things that shouldn’t happen to anyone in a First World country let alone those who are vulnerable and I intend to be brave enough to tell it how it is.

I am off to the clinic again to get my blood taken and to re-stock on syringes after my free druggie kit from Boots has been depleted. Another story there but not for today.

I am off to the Infection Control (OPAT – Out Patient Antibiotic Therapy) clinic at the hospital this morning- sounds harmless enough, heh, but this is where I first saw one of the sources of my trials and tribulations actually written down. MSSA (Methicillin-Susceptible Staphylococcus aureus) Infection. In the same league as MRSA (Methicillin-Resistant Staphylococcus aureus) but apparently more scared of antibiotics although I had to go through my fair share of antibiotics that didn’t work on it before I could even believe that I would live to see this year.

I am wondering how many of the people I have met over the months of attending this bizarre clinic will have been released from the chains of intravenous antibiotics and the Superbugs that are being targetted by them. I wonder whether there will be a new intake of those unfortunate enough to have acquired either an HCAI (Health Care Acquired Infection) or CA (Community Acquired Infection) over the festive season.

When I was first admitted to this clinic, I had already been on Intravenous Antibiotics (IV) for nearly 3 months and been through a about 7 different types of combinations of drugs and was all too aware of the fatal dangers both hospital superbugs and community acquired infections. I know that I was just very lucky that I had become allergic to the combination of medication I had been released from hospital on as I had just become complacent in my illness and so trusting that I thought that it was working.

Fortunately, one of the nurses who came to my house 4 times a day, refused to treat me because of my reaction and sent me to A&E where after an ECG and numerous blood tests my medication was changed to a combination that finally started to work. It was only when I started to feel better after this change that I realised how ill I had been.

Anyway back to the Infection Control clinic – I usually end up in a row of people whose infections have attacked various parts of the body – hips, feet, legs and me – my head.

Because most Staph Infections that infect the bone and cause osteomyelitis (disease of the bone) are usually radically treated by surgery you get to see a lot of amputations and external contraptions that take the place of bone whilst the infections clear unfortunately, in my case, it would just not do to aputate my head and therefore I have had the pleasure of meeting lots of people come and go whilst the consultants decide what they are going to do with my bone graft and titanium plate which they believe to be so badly infected that I have to have removed.

I know that in time gone by that I would not have lived to see these goings on but whilst I am alive I want to be honest about my journey through what is the NHS Infection Control path and be truthful about what damage these supposedly harmless superbugs can do.

I will update this later but for now I have to put the plastic bag over my picc line, take my iv out and get my bottom into gear in order to face the first clinic of the year and the decisions that my team may have got around to taking.

See you laters!