Right, I got my letter from the doctor and I really did send this letter of appeal. Let us see how it goes!

Dear Sir or Madam,

I am appealing against the decision to refuse my entitlement to DLA. I am appealing on both the care and mobility components as my family (mother, father, sister and boyfriend) all care for me and live with me because of my conditions and the mobility as when I am sick I am bedridden.

I have enclosed the recent letter from Infection Control which states that they have no idea as to whether I will get another infection before having most of my forehead and the skull up to the midline of my hair removed and completely replaced with titanium. This operation is only due in mid July to reduce the chance of infection. Until then I am damned if I take antibiotics and damned if I don’t. They feel sorry for me because they can’t be sure that I will live. Please note that the necrotic bone and skin around it is now far bigger than the 1 cm stated in the letter already. I will enclose a picture.

As, as my plastics consultant will verify, I get floored by the MSSA and suspected pseudomonas infections this means that whilst dealing with infections I am almost bedridden and completely housebound as these infections eat through the bone in my head and the skin and make each and every muscle ache, even waking me during the night to take pain killers. This makes mobility absolutely impossible.

I was diagnosed with PTSD over 4 years ago because of the brain tumour and recurrent osteomyelitis (infection) in my forehead. I can not even tell you how scared I am now and how many times I think back and forward with just trauma all around. There are many times I question the reason for life and dealing with DLA refusal only goes to fuel this. I have been and am still suffering. I am not lying.

Please have a look again at my form. I want to get better but have no choice but to have half of my head replaced. Hopefully after that I will never have to deal with this system again but until then it is might right to appeal. I do not want to feel guilty about having a good day as I have so many bad ones. If this infection was in my leg it would have been amputated and my rate of survival much better than it is now.

I am so confused about my dizzy spells that I am not sure whether they come from the holes that I have or from the PTSD. All I know is that I can’t cope with getting a letter saying that I am too well to get DLA – how many times do I have to nearly die before I qualify to be that ill?

I have also enclosed the latest letter from the Plastics department which shows that I will have to have the whole of the titanium and bone graft removed (I will show this area on the photograph). I am only being operated on in July to reduce the risk of re-infection and this will be my last chance. As this now includes vascular surgery removing veins and tissue from my forearm in order to try to get a good supply of blood.

The best answer I get from my consultants when I ask whether I will live through this is ‘we hope so’.

I also enclose a letter from my GP’s surgery as apparently the form sent by yourselves was filled in by my notes and not by any recent knowledge of me and my current situation.

Regards,

OK, so I wasn’t brave enough to actually give the doctors surgery the letter I wrote but I did summarise what I had written to the locum that I managed to get an appointment with and go through so of my issues in the 10 minute alloted appointment.

Apparently they had supported my request for DLA, in what form I do not know as I was not privvy to that information. What I do know is that I now have a letter to support my application to appeal to the refusal of my initial claim for Disability Living Allowance.

I had almost given up on the idea of appeal as I did feel quite well for a couple of weeks but unfortunately I am again suffering from dizziness which is so bad that it causes nausea.

It probably is stress again but I have another appointment with the same doctor in two weeks time to see if the codeine analgesic has worked or to bring forward my next appointment with the ENT surgeon.

I am so sick of being sick. And with the stress of everything it is so hard to differentiate between what is going on physically to what is going on psychologically. Either way it spoils the days that I have with my son and that is what led me to make the decision to appeal.

We (the doctor and I) did discuss going back on anti-depressants but it is not really an option that I even want to consider. Although they do help they come with their own problems. Firstly they take weeks to work and then, for me, they take away my fire and passion, which to me is very important. They make me bored of life and that goes completely against what I do and need to feel.

And so, as I sit here and contemplate my spinning world, I at least know that I am doing something constructive and hopefully will get the recognition that without undoubtedely makes me question myself.

Dear Sir or Madam:

I tried to make an appointment this morning to see a doctor urgently as I have been feeling so dizzy everyday and it seems to be getting worse.

If you choose to help me then please do quickly. I will write for my right to appeal the decision by the DLA tomorrow and send it special delivery with a copy of this letter included. If you chose not to help me then please take this letter as a formal complaint.

I do not know if this dizziness is related to my head or my PTSD but I think I deserve to be seen by someone who has an incling about what I am going through. 1 doctor has left, 1 had an appointment on 23 April and 1 sometime in May.

I had not felt that I was able to come to see anyone at your surgery as I have recently received my letter of refusal from the DLA who say that they contacted you regarding my condition. As my dizziness only began after this news which is crippling when you have been as ill as I have I presume that it is from my PTSD which will have returned because of this devastating news. If your surgery wrote this down then you must take responsibility for the outcome. I can not and will not be more ill than I am and have been.

As I think that having 1/3 of my skull removed in July this year, my veins and tissue removed from my arm, MSSA, Pseudomonas and Post Traumatic Stress Disorder is enough to qualify I am very angry by not being supported by this surgery. I have been practically housebound for 9 months. I refuse to be more ill than I am and lie about my good days – they are too precious to me.

I was too angry to even bother to come and see you.

This morning I received a call from my life assurance policy holder who said they could extend my life cover years if I go through the channels including yourselves again.

It was then that I knew that whoever filled in the form for the DLA would also fill in the form for life cover. I also know that I would not get extra life cover because of my condition and this has to be noted. As I have not been told that I can be fixed and that I will survive I should have been given more support anyway. The best I have got when I ask my consultants if I will live is ‘I hope so’. How would the form have been filled in if I had a more regular and less controversial condition that was as life threatening?

I am so distraught that I can not talk and have been on the verge of crying everyday and every hour for the last 2 weeks. My dizziness is getting worse and it feels as if my body has been cut into 5 different sections and they are all rolling in different directions. I feel so drunk from dizziness that I have not driven. In fact I have only felt well enough to drive about 5 times in total since surgery.

If the best I can do is write to the surgery that is supposed to be my first point of care then so be it. I am too tired now but not only is the balance of my life in your hands but that of my son and the rest of my famly.

I am living on my sons inheritance, I am not on any benefits, I can’t work with a one inch piece of rotting bone poking through my head and the chance of infection returning. All I can do is pray that this will all be but a memory after the next lot of surgery and recovery.

Because of my honesty on my life insurance which was taken out after my initial surgery they will argue that my condition is related to sinusitis and osteomyelitis and my son will chance receiving nothing. I know this is not true because I was told that I had to have the operation in order to take away the infected bone from the initial condition and one of my surgeons told me that this infection was completely different. Both my ENT and Plastic surgeons have told me about the pseudomonas and my family were with me at the time and yet it is not written down in my notes once. I want it on record that should I die that it is not from the original conditions of sinusitis and osteomyelitis (one of my reasons for having it removed was so that it could be taken off my life cover for my son).

I have battled MSSA and Pseudomonas following incubation from my surgery on 6th August. I have also grown strep and diptheroids on my wound. Each one of these bacteria can be fatal.

I have been through so many different types of antibiotics because they did not work i.e. resistant.

I had a different surgery to one that I was told. I was supposed to have my brain moved into the hole between the front of the reconstructed skull and this was unable to be done as the dura has become calcified. Yet I still had the sinus obliterated and this is where the infection occured. If the drainage had been left the chance of the infections being able to take such a hold on me would have not have been there as they would have just drained out through the fantastic drainage for which I have had to have 2 follow up operations to correct.

I am scheduled to have reconstruction surgery sometime in July to reduce the risk of infection and if the infection has not returned.

I have been taken off of antibiotics because I was so ill on them that I was in constant pain and was very close to being incontinent. This was only a few weeks ago and so for only 3 weeks since the beginning of August can be classified as good and I am not due to be better for another 6 months at least and therefore you could help me still.

The surgeons and Infection Control do not know if the infection will return. If this would have been in my foot it would have been amputated.

My family have been supportive and incredible throughout every year since 2002. This has an overwhelming bearing on how they live their lives. My father, my mother, my sister and now my boyfriend now stay with me to help but because we do not shout we get pushed aside.

I am appealing for the help that I am entitled to.

Yours sincerely,

Alexandra Jones

Well, I am just too excited.

I am off to sunny Spain tomorrow and I don’t know what to do with myself.

Just so you know I might be too involved with sunshine and open spaces to consider the cyber world but you might get a sneaky look in somewhere along the line.

I have waited soooo long for this that I am scared that it will go by too quickly.

Passport, check. Exhorbitant insurance, check. Letter from the consultant stating all the wrong things – check. Medical bits and bobs, check. Packed yet – noo!

Off I pop then and I shall try to master the art of uploading some beautiful pictures.

Adios amigos

I sat down to write a letter to appeal the Disability Living Allowance today and try as I might I couldn’t.

I feel angry and then I doubt myself.

All in all it just makes me feel so low. I know that I must do it as if I don’t they will just tell me that ‘you should have appealed’.

I want to be as well as I can be when I can be. I have no control over when I am ill but I am not lying about it.

The last letter from Infection Control said that they thought it was best for me to come off antibiotics because of the extra harm they are doing to my body. They also said that they would not necessarily stop any further infection. They could not tell me if any infection would return.

All I do know is that if my infection was anywhere else in my body they would have taken any prosthesis out BEFORE they even began the long antibiotic therapy or just amputated.

Seeing as that amputation was not possible because the MSSA / Pseudomonas infection was in my head I have to live with the knowledge that I can be struck down again before the next operation in July when I will hopefully and finally be well enough to have most of my forehead and the skull up to the midline of my hair removed and completely replaced with titanium mesh.

As you can imagine the flashbacks and flashforwards are not a pleasant experience!

I would love to work but have a one inch hole with protruding bone in my head and not the most exciting prospective employee at the moment and I figure if I could get the DLA it might just help me tick the disability box for an employer and perhaps I could get a little job that could fit between now and the operation.

Anyway, I shall try again tomorrow. I am not going to be more ill and suffer more than I have – I am going to get as strong as I can to get through this operation and if I have to be poor then so be it. I will write about that too!

After the long awaited and yet fearfully anticipated forehead reconstruction I recovered quite quickly and once my new forehead was revealed I felt over the moon.

It was as if parts of me had been returned – not only physically but within me there was the long forgotten confidence of a rather good – looking girl who had a career, a social life, friends and happiness. Of a girl that thought nothing of singing in front of hundreds of people. Of a girl who would go against the law of apartheid and teach drama to children in the local townships just to see the joy on their faces. Of a girl who give up any chance of a university degree because of her unfailing belief that what she was doing was morally right. Of a girl that could dance until the sunrise and laugh until she cried.

Everything was immediately achievable and the recent past where I had become withdrawn, under-achieving, reclusive and very bad at social situation dissapeared. I had the privalege of being able to step into my past and gain wonders.

Although I was dealing with having 40 odd staples and bald patches of hair and, of course, the sensation of having a rather tight hat which I was unable to take off, I was given, quite literally and more importantly psychologically, a new lease on life.

Little did I know that it was not to last.

I am not necessarily unhappy that I had this experience because it did make me realise how inhibited I had become. After being diagnosed with Post Traumatic Stress Disorder (PTSD) I knew that I had a name to my problem but I am a person to deal with something and so I did and had no idea how much of a hold it had on my life.

I had freedom and peace and the ability to relax for a whole week or so. I could look forward and make plans, smile and immediately mean it without secretly gritting my teeth. The little things that would have upset my day were temporarily nothings.

You see, I have had quite a bit of training in drama and I realised that I had been putting it to good use.

Anyway, after the swaddling headress was undone, the staples removed and the matted hair tidied as well as could be expected I was delighted, confident and able and willing to conquer the world again. I had reasons to live. I had my life back.

Although we all noticed that there was a small area of air between the skin and bone graft at one of the edges, I was reassured that this would subside and eventually bond.

Unfortunately this did not happen.

Over the weeks it stayed and after the swelling that caused my face to look very much like a helium balloon of Dora the Explorer went down it became a little red dot.

This little red dot started to raise alarm bells with the consultants and because they were used to dealing with this latest form of infection and said that it would probably errupt.

It took a couple of months to break through and different types of antibiotics, again unfortunately, did nothing to stop the eventual hole in my head appearing.

I had dealt with dents before but not a wound and although I was too ill to be immediately disconcerted with the disfiguration effect I was still optimistic about the outcome.

As the weeks passed the hole became bigger and the wound opened to expose the bone and soft tissue. Every time I went to a consultant they acknowledged this but I was still optimistic.

It was only at my last visit to my wonderful ENT surgeon that I realised that I was going to have to deal with a lot more than just a skin graft.

He started talking about vascular stuff! I know the bone that is exposed is a bit rubbish, but I am still none the wiser as to how much of this bone is rubbish as almost the whole of my forehead is either bone graft or titanium.

I received the follow up letter from Infection Control stating that they thought that it was the best course of action to come off the antibiotics as they were worried that they would, in turn, cause more problems but they could not be sure that they had eradicated the infection. I have an open door policy in place!

I know that in most cases of raging infection and when that infection is on the site of a foreign body, in my case the titanium mesh, that the foreign body is removed before they start antibiotic therapy as there is a good chance that the infection is deep within it.

As I get better and better within myself, the hole gets larger and larger. Hurting and pulling whenever I turn in bed. There everytime I look in the mirror. It is now almost one inch in diameter and that is the bit that is exposed. The bone is separating and splintering on one side. There is a deep rooted fear that this could just keep getting bigger.

The plasters that I use are no longer covering the area and you can see an obvious defect. I am far too self-conscious to look at it more than once a day when I change the plaster. I have not had a swab for months.

Although I feel fantastic today, I am aware that on the 25th (which is my 39th birthday) I have an appointment with my wonderful, smiley plastics consultant and his team.

He will let me know what he saw in the operation on the 8th February. He will either tell me the plan or give me some ideas. Half of me wants them to include me in those options, the other half just want them to fix it.

Most importantly I just want it to go away. I would love to run but I have no option of that. The hole in my head is getting bigger and the silver plasters don’t!

I get upset easily. Especially when not understood. I get angry easily. I find it hard to make even the simplest of decisions. Sometimes I will say the wrong word and know it. I will say ‘chair’ instead of ‘table’ and ‘close the door’ when I mean ‘let’s go out’. I find it hard to relax. I find some days much easier to bear than others. I feel dizzy and drunk even though I have only had water. I find it hard to form friendships and socialise as much as I would like. I find that I always want to go somewhere but end up staying at home. I am unbelievably scared about the idea of dying when it is a normal day but can face death with uneasy calm when it is staring me in the face. What is a normal thing to do for others is sometimes just too trivial to spend my time on. I get tired. I go to sleep and pray for a bit of sunshine in the morning. You see, sunshine makes it all go away and brings excitement. I crave excitement and I just need the courage to go with it. Stuck between life and death – I would take life anyday. Faced with uncertainty I will be positive. Faced with negativity I will be full of rage. Face with a smile I can match it but only when I relax a little can I be confident enough to follow it through. The world spins. I feel as if my elastic has been tied around a tree. The world stops. And I feel like I am being catapulted through the air.

A bad day today so I have decided to use it.

I have wanted to write about post traumatic stress disorder and its effect on me for some time.

I hope that I have explained a little here.

If I had been diagnosed with HIV, I would get disability and a very good long term prognosis.

If I had been diagnosed as Autistic, I would get a blue badge with no worries.

If I had been diagnosed as having arthritis I would been given a car.

If I had cancer I would be given disability with a percentage of how many people survive from the situation at hand. I would hold on to the part that was positive.

Not one of my consultants has been able to tell me that I will live. The most optimistic they have been is to say that ‘they hope so’.

So why the hell do I keep getting treated as if I am a thief.

Why when you are so ill for so long do you have to fight the system when you need it the most.

I am decided. I am going to confront the person who put their name on the letter and make them look at my head.

I have had enough – I pay £115 for 1 weeks insurance for a pre- existing medical condition, one of my consultants tell me that the infection I have now is different from the infection that had been CUT OUT of my head, the infections that I have been told I have and those that I have seen written down are MSSA, pseudomonas, diptheroids, strep all hospital bugs and in 8 years of infection never mentioned. Yet I have sinusitis written down instead. This would invalidate my assurance and I know that it is untrue. It is just a euphamistic way to take the blame from nosocomial (hospital acquired) infections. I can not afford for this to happen. I have paid my way and my son deserves the pay out if, because of listening to everyone else I am not around to care for him. In the meantime I am spending all that is left of his meager inheritance on life because the Department of Work and Pensions say that I am not ill enough – I have legs.

Forgive me for anything that I do from now on.

Watch this space. You want to start – I am game.

I have just received the news that I was expecting. The ‘we don’t think you are ill note from the Department of Work and Pensions about my claim for Disability Living Allowance (DLA). Stating that they made their decision based on my honesty, every piece of documentation and scans from 2 hospitals, 4 consultants, 2 nursing agencies and the reliable statement of a GP who won’t even write me a letter to travel or prescription as they are too scared! I am fuming but not so much for myself as I expected this much from the pen pushing police but how long do really ill people have to suffer because of the rules that are supposed to help them and not those who are scamming. I nearly died last year and when my mother phoned to inform them that I was in hospital they just said that they could revoke any decision. It is now obvious that people are dying without the help that they deserve.

I am going straight to appeal and going to show them my head. I want them to know that their system isn’t working and I am very tempted to go to the press to show exactly how you can get pushed out so slowly but so surely that if you are not strong enough it doesn’t bear thinking about.

I don’t want to be worse than I am – I want to get better – I certainly don’t need this shit. PTSD (Post Traumatic Stress Disorder) gets straight back in there along with PMT, political rage and God help me if I got in the car right now.

I have got a freedom pass!

Not a disability or pensioner pass as you might think but a letter from my consultant saying that my condition is stable and that I am fit for travel.

Super dooper, fantastic and all my dreams come true in three little sentences.

I have booked a week in Spain over Easter and now I only have the small but crucial job of finding a travel insurance provider that will cover me for this short escape.

I have had travel insurance for my previous condition before but it cost me over £300 a year and then, when I needed to claim for stolen luggage from a hijack attempt (another story) it took almost 3 years!

So I shall begin my hunt for an insurance company to cover all scenarios and eventualities and let you know the outcome.

As I have mentioned before I have been given the contact details for companies that cover cancer and other conditions that are more infamous but from previous experience it is really difficult to find a helpful travel insurance package for pre-existing medical conditions that don’t come with their own tick box or notoriety press coverage.

Wish me luck as I want to become an escape artist for the first time in 9 months.