On Friday morning I actually noticed that one of the corners of my now very pronounced hole was leaving residence.

Yes, there is a little bit of bone that is protruding and on examination my ENT surgeon pronounced that it was indeed bone that I was looking at on a daily basis the only problem being is that it is not very good bone!!!

As I was taking the opportunity to sit in the patch of garden that was being shown a little sunshine this morning I was contemplating the leper colony that was once an island off of Greece and thinking that if I have to deal with a much larger facial deformity than I have dealt with over the past 9 years I would rather face up to this in a warmer and more inclusive environment rather than the cold and very unforgiving UK.

I could still be of benefit in a comforting environment. I could do chores or take the place of a working child in a 3rd world country.

As I have had do deal with the social system based in the UK for so long and been offered the social care system that personally holds no benefit to me mentally whatsoever I am contemplating starting an exchange programme.

Anyone want to join? I will take the place of a 3rd world child in a factory environment and they would be able to benefit from an education in the UK. The only problem being is that they would have to deal with the problems associated with growing up here and to be honest – if I am thinking their lifestyle is better what on earth could I do to encourage them to think that they would be better off here?

Just a thought.

I have been away for a weekend with friends.

Not something new or lavish. Nothing too exciting or extreme. For me it was the start of normality again though and there is nothing quite as good as normal when you have been living in a cocoon of infectious disease and uncertainty for so long and for that I am truely grateful.

Just to be able to have conversations with friends instead of a barrage of nurses, doctors and consultants who look at you with their head slightly leaning to one side with that ‘there, there’ look plastered all over their faces which roughly translates as we don’t have a clue how this is going to turn out for you but we are trying to be decisive.

I still have an affinity with lavatories – I never like to be far away from a good standard of ablution facilities but the other day I walked fast enough to overtake a pensioner with a walking stick! How cool is that.

I have visions of me partaking in the 2012 Olympics in the hidden disability hurdles which will be under the ‘you can’t run but we will certainly try to hide the fact that it was our fault’ section.

It is only now that I realise that I really have no idea what was wrong with me as it is so hard for anyone to give you straight answers nowadays for the fear that you will sue them and as I mentioned before this is the reason I am writing this all down. I want other people to realise that they are not alone.

Although the MSSA infection is supposed to be the better of the Staph infections and in spite of the fact that I was catagorically told that I had a ’suspected’ pseudomonas infection, it was because of the good standing that MSSA has in relation to all of these killer superbugs that MSSA is the only infection that has actually been written down in my notes.

I also have been able to grow Strep and what is euphemously written down as Diptheroids and converted to normal skin flora from the open wound on my forehead. Each of these bacteria are killers if they get too much of a hold on your body and as I start to feel ‘normal’ again I realise that I am truely grateful to be alive and although I obviously am a superwoman that does not make me forget to count my blessings when I have what everyone else would consider a boring old day.

To me it is a kick in the teeth to infection and another point in my favour.

How lucky am I to be alive?

I am finding it increasingly difficult to write at the moment.

Fear mainly, along with some anger mixed with the usual PMT emotions.

I am on day six of living without antibiotics. I am not sure how long I need to go before I will be declared bug-ger free but I know that it will be at least 6 weeks of feeling like this.

Scared of every pain and swelling. Each morning I wake up and (after being incredibly thankful that I have woken up) I touch my forehead to make sure that it isn’t unduly swollen and then when I am brave enough I take off the silver plaster that is covering the wound on my head to see if this is clear and without any untoward signs of infection.

I don’t know why but although I am feeling stronger day by day I am unbelievably emotional this time.

I have lived with infection for 8 years but until the reconstruction and devastating disease that ensued I have had to deal with a whole new approach.

I was used to losing tiny bits of my forehead and for the 18 months leading up to the reconstruction I would say that I was the healthiest I have been in years and with that came a confidence to deal with any small infections in the same manner that I had been dealing with them over the previous years.

But this is different. This time the infection got hold of the whole top part of my head and so I have to get used to whatever comes and I think that is the crux of the matter – I have no idea what is to come.

Although some of my aches and pains are subsiding, I still find I need painkillers to get myself moving without looking like the hunchback of Notre Dame in the morning.

My tummy, thank goodness, seems to be responding well to living without the constant barage of domestos that it has had to deal with over the last 7 months and I truely grateful for that.

I have in turn replaced this with a multitude of vitamins and minerals to bring my iron count up and cholesterol reducing supplements to bring my quite alarmingly high LDL levels down.

There is one good thing about being ill. You find out all the other hidden problems that you have through the multitude of tests and consultations and hopefully you can deal with these before they too take a hold on your body.

As I told you yesterday I am not in a good mood.

Splints up your nose on either side of your septum and sewn into the middle of it that leaves you feeling as if you have just contracted the mother of all colds. So speaking to someone face to face leaves you open to ridicule and the temptation to smack some of my family members has been all too close for comfort. So when the registrar called me after requesting further interest it left me having to muster all my control in order to try to be understood.

He told me again that the operation had gone really well and that there was no visable sign of infection. This is all very well and great news but doesn’t necessarily mean that I am infection free but that they will make a decision as to whether or not I should stay on my concoction of domestos antibiotics.

I really want to come off all of my medication but also know the risks and the fact that I still have bone popping through the front of my head is something that will need to be addressed.

The question is do I come off the antibiotics and hopefully remain infection free and get some of my dignity back and maybe get rid of some of the pain or will they leave me on the antibiotics until they have thought of a way forward.

The registrar couldn’t answer that so I suppose I will have to wait until next Tuesday to see what decisions will be made and just go with the flow.

Lots of praying, lots of trying to be optimistic and thinking about looking forward to something fantastic but finding it increasingly hard to do whilst feeling the most miserable both physically and mentally than I have in a long time.

Well, I am miserable so won’t chat for long. I had my operation on Monday and apparently it went very well but I am wearing splints up my nose again which is very uncomfortable and I really have no idea of what else they planned or saw during the operation as I only saw a registrar surgeon afterwards.

Quite honestly I just want to cry – It is just so annoying. It feels like your nose has been punched (which it probably has) , my eyes ache and I am so blocked up and bloody. I have a countdown of 6 days until the splints come out and I will literally be counting them down, minute by minute.

Support for less notorious illnesses or disabilities is very hard to come by.

If you have a well known disease of disability you will no doubt have a support group or charity to which you are able to turn to. If you are unfortunate enough to have an illness that does not come with its own tick box or newspaper worthy infamy you are basically left on your own.

Although we are miles ahead medically with treatments than we were 50 or even 20 years ago it does nothing to assuage pain, poverty and all encompassing fear that comes along with either being diagnosed with or living with an infectious disease or other debilitating and sometimes life threatening condition. There are many illnesses that are born from just being in an unfortunate situation and people should have a safe environment whatever their worry.

When being cared for in the comfort of my home, a kindly nurse brought around some documentation she had for the MacMillan Cancer Organisation. Essentially there was a list of travel insurance companies that would deal specifically with diagnosed conditions but I thought I would just take a chance and see if they would be able to refer me to a similar group or organisation that would be able to help me with benefits, complementary therapy, financial help, support groups or life choice changes that I desperately needed.

I didn’t get past go. I called and asked if they knew of anything and I just got a sorry.

I called the government disability helpline and was just made to feel like a dying thief.

I tried to get an appointment at my local CAB (Citizens Advice Bureau) and didn’t even get through to the line and once I even tried to make an appointment in person but waited so long just to get to see the receptionist that I gave up.

My GP surgery couldn’t help.

I see so many different departments in my local hospitals and was never even offered a direction.

There has got to be a FRIENDLY face or voice when you are dealing with disability or illness that does not have a well defined label or notorious presence and yet I feel alone. I know that I am not as I have myself sat in line at the Infectious Disease clinic with lots of other people in the same and yet all very individual predicament.

If I get strong enough to do so I will try my best to help with establishment of ‘Intermediate Angels’. For people who feel they have nowhere to turn but are willing to help themselves.

I know that this should be the job of CAB but unfortunately they are not able to help in some and many circumstances. Sometimes there is a need for immediate help and there is a huge gap in our society that needs to be filled. It needs to be filled with understanding for people on an individual basis and used to be filled by just living in a community.

I spent yesterday filling in my DLA form.

It was quite uneventful and even quite easy to fill in and yet I felt more disabled and less understood by filling in that one piece of twaddle than I have ever let myself feel emotionally.

You see, if you have never filled in a form such as this, it has certain criteria and only certain criteria that you have to tick. If you are worse, in between, or something slightly different or even if you would rather retain your dignity and perpetual, optimistic outlook on your condition it leaves you without that option.

I will give you an idea of what I mean.

Are you incontinent – Yes or No but what if you have to be bloody near a loo in order to retain that dignity for most of the morning?

Can you walk unaided – Yes or No but what if you can and want to walk unaided but can only do so when you are bloody well enough and you can’t tell when that is.

I felt quite shocked at how ill I actually was by filling in this form as honestly and truthfully as I could and what makes me even more bloody angry is that you have to have been as ill and retain that illness otherwise you feel like a dying thief.

I know you can get other people to fill in these forms for you but I do suggest that you do it yourself for a few reasons.

1. You understand your entitlement when you realise how ill you are
2. Do you really want to tell people about your ablutions and how you can get stuck in your own clothes when taking them on and off.
3. Only you know how you really feel. Even those who are closest to you don’t know the pain, discomfort or embarrassment you feel on a daily basis as I am sure, if you are anything like me you don’t go around moaning all day. You take your medication and get on with it.

However frustrating this process is for me, I have now spent almost three months bedridden, been on iv antibiotics for 5 months and will be on oral antibiotics which my doctors have told me people can live on for years. Not only do I need this for the little amount of money (I am spending my money on life at the moment and am not on any benefits!) but more importantly it opens doors to me in order to gain some freedom, dignity and most of all respect from all avenues that I have to deal with in the forthcoming uncomfortable months.

If I can get a blue badge it would mean that I would be able to drive my son to school and park whilst I take him in and if I need to use the toilet. It will also mean that I will be able to be taken to appointments and accompanied by family members and not have to pay taxi charges. It means that I will not have to fight for my rights as much as I can’t quite handle that at the moment as everyone makes me angry (PMT still lingering, sorry).

With a hidden illness or disability it is hard to be taken seriously. ‘But you look so well’ I get told frequently. ‘You must be better now because you look great’ Is another one.

I need proof. Just getting a parking bay in the estate I live in was a nightmare because I had no ‘proof’. I still don’t have it although I have had dispensation codes for the nurses I have had. I am also paying for it too! They were quite happy to take my money yet I couldn’t and didn’t have any help whilst I was nearly dying!!! I have had to get well enough to fight for everything. Bloody stupid, me thinks.

I didn’t want to do it but have got to the point that I have to. I am determined to get completely better but whilst I am not going to get the money back from the double National Insurance contributions I paid whilst be employed and self-employed in order to keep working through my illness over the last 7 years I am not going to feel guilty (that bad inherited Catholic condition) and so my form is filled in and I will send it in the post as soon as I can – let us just see how ill the powers that be tell me I am, heh.

I have to confront my bank account today. I am scared.

It is amazing how something that is so easy to do, what with online banking making life so much easier, can also be so hard.

When you haven’t been working for a while and that while tends to be a little longer than intended the dents that occur in said bank account become slightly more obvious and pronounced.

Things that you have to pay for on a regular basis don’t just dissapear once you get sick and although you may not of thought about a certain direct debit for years they suddenly get to be stars of the show with bright shiny lights on them saying ‘pay me, pay me’.

I like to think of them as the evil characters in the show. Always there, just behind you and never going away.

I wish I could wave my wand and let all be well but life isn’t like that is it and that is another reason I am writing this blog. Hopefully, with a little helping hand from friends and family alike, I shall master the art of AdSense and try to start a little revenue stream from this project.

I don’t know if it will work but whilst I sit at home with nothing better to do I might as well try to be a little productive.

If I had a more well known disability I would be able to access both emotional and physical support from organisations but when you have no tick box to tick you are essentially left on your own to fend for yourself.

And so, with a heavy heart, I am going to venture into the scary scene of my financial status and if I come up with any fantastic ideas I shall do all I can to share them with you.

Have you ever felt bossed around?

Try being ill and having to rely on those around you. It suddenly feels like you are 10 again and always in trouble.

I have a great family support system and have had so many nurses, doctors and consultants who look after me and I really am grateful but sometimes it all gets too much and I just crave my independence and a little bit of freedom not only for myself but as a mother.

Everybody thinks they have the answer to your problems and because you are ill they think that they have the right to tell you how to get better.

For years I have trusted and listened to everyone and tried to please all of them, all of the time but I think the intensity of being so ill, getting a little bit better but knowing that we have to go
everything again is just bringing everyone’s stress levels up to maximum and we are all about to explode.

I am planning on going away for a night or two in the coming weeks. I know that many people are quite happy in their little world day in, day out but I am not like that.

I feel like a caged animal and if I don’t get a taste of freedom soon I think I shall go mad!

Today I had an appointment with my GP, first thing.

I like her. Although I have been with the practice for over 7 years, I have only just got to know my GP due to circumstance. I have seen the other practitioners and they do have some knowledge of my condition but it being so rare I understand that they sometimes just don’t have the answers and that is why I decided to develop a relationship with my own GP in order to just talk. Even if there are no answers at least she doesn’t talk over me, around me, about me or just TO me.

She listens. She has to. There are only 2 of us in the room and as much as I have tried, it is easier to speak to and be listened to by a woman.

When I first developed a tumour I joined the Epidermoid Brain Tumour support group online and grew some wonderful friendships – I have stolen their motto for today’s blog – KOKO, Keep on Keeping On.

I just want it to hurry along now – I am ready for the challenge that is ahead and although I have my first operation date set for 8th February, I wish it were sooner. In some ways I am scared that the length of time between now and then will give my little superbugs the window of opportunity to make more of a mess, but this was reassured this morning when my GP told me that the new regimen of drugs I am on are the ‘Domestos’ of antibiotics.

In another way I just want to deal with the situation, overcome it and move on with my life. I have managed to lose a couple of kilos already and feel positive about the future – I want that positivity to stay so I just had to remind myself to Keep on Keeping on!