postherpetic neuralgia

I got in!

(hence, why I felt on top of the world and ran an oval three times).

The interview had me sit in a small room with a Physiotherapist, a Rheumatologist, a Neurologist, a general GP and a witness.
I was interrogated beyond belief and had to recite every small detail since 2014 (which is incredibly difficult when you suffer from brain fog).
I named every medication I have been trialled on, every test done, every Specialist seen. I had to do the routine ‘touch your toes, jump on the spot thing’ too.

There was a bit of shock, disbelief and then they asked if they could have five minutes to themselves to discuss (which turned into about twenty minutes being alone in a room).
Then they came back and gave me the news: they wanted to help, so I’m IN!

Together, they will be writing a plan of attack and contacting my important Specialists (my Gastroenterologist, Rheumatologist and General Doctor). These are some of my potential pathways:

A) ZOSTRIX “chilli” cream used for sufferers of Post Herpetic Neuralgia.
Has anyone used it before? Apparently the burn is pretty painful, but it helps with nerve damage and severe arthritis? They were shocked that I was not put on it when I first developed Shingles. It might be too late now 😦

B) Physiotherapy with someone specialised in Post Herpetic Neuralgia (Nerve Pain from Shingles).

C) Anaesthetic injections in my neck

D) an appointment with the Dizzy Day clinic to help my balance and dizziness

E) A new antidepressant which targets nerve pain (my current one targets my stomach, so we have to be careful with this option).

I obviously chose option A to attempt first.
(Who would turn down an attempt at the Chilli cream?)

My consultation today was covered, but I will unfortunately have to pay a small fee to see the Physiotherapists. It is 85% cheaper than my current place, so I guess that’s a bonus.

My allowance with the government ends in August, but as usual, there is a wait with my start to treatment for at least another five weeks. My Government Allowance could potentially be extended so I won’t have to look for work for another three months and solely focus on treatment… but they don’t want to jump the gun yet. I still have two months.

So, to sum it all up, I am really excited to see where this takes me.
Like they said today, “it’s all about trial and error”. I was left thinking that everyone had given up on me, and that we had tried everything and that I would have to live with this uncertainty forever.

Apparently we haven’t tried everything. I just had to find a new team, with new ideas.

My treatment for H.Pylori ends on Friday, so I am also excited to finish that too. It has been one of the worst medication treatments I have ever been on (and I don’t usually whinge about medication).

Lots of love and spoons to each and every one of you.
Thank you for your endless support on my journey.
There is hope out there for each and every one of us. It unfortunately takes a lot of time, a lot of trials and a good, caring team of professionals… but there is hope.

C xo.

Hi readers,

This is a must read.

I apologise for my recent absence.
Illness Army is incredibly popular, and I have only made time to go through each of your emails and publish your stories instead of my own.
Ihave also had a lot going on in regards to my health, a few rough flareups and became lost in my dark thoughts, symptoms and busy agenda.

Even though I have been absent on WordPress, I have not been so absent on Social Media.
I have received an influx of personal messages lately reading the following:
“You are looking great lately. You must be feeling better,”
and,
“I have seen that you have been getting out more lately. You must feel fine!”

Incredible.
Photos begin circling of my face painted with a little bit of makeup, hair straightened, sitting in a public place and suddenly everyone remembers that I am still alive, and I am deemed as cured/better.

Firstly, I am not cured.
I don’t know how to respond to the “feeling better” statement.
I don’t know why society assumes that someone that appears to look healthy, is healthy.
If anything, I am adjusting better to my new norm.

Secondly, yes I might be out – I can assure you it was for an hour, no more.
Do you know how much strength and additional effort it takes a Chronically Ill sufferer to get up and leave the house for ‘events’?
I don’t know about you, but I personally have to be dragged out kicking and screaming. Every inch of my body aches, I am trying to hold in my wanting to vomit and the last thing I want to do is be in public being stared at because ‘the normal looking girl is walking too slow’.

I don’t know how to feel when I receive these personal messages.
Do I take it as a compliment, with pride?
Or do I take it as an insult? As people come to me after seeing a photo or a post, telling me that I look great, and then 101 question me as to why I am still not at work, why I am still in appointments, why I am still unable to drive and why I missed our lunch date.
I am continuously spoken to like they think that at the snap of my fingers I can just turn on the Health Button. It is strongly ringing in my head as an insult.

It’s always one extreme or the other.
I am either deemed well enough to run a marathon, or I must sit in my house alone all day because the symptoms are making me miserable.

There is never an inbetween.
People don’t understand that we can feel strong enough to go out some days, but still come home sick/still be sick>

Are people naive enough to think that I’m going to happily post a photo of myself when I have acne all over my face, I’ve been vomiting my organs out and I am so pale that I could be mistaken for Casper the Ghost?
Ah no, and I am certainly not going to post a Facebook status about how I contemplated killing myself four times this week, either.

I, like you, choose to only publicise my achievements; the days that are slightly more bearable than others, and the photos that make me look half-decent. Why? Because I’m human.

Forgive me if I, too, want one day where I look ‘normal’, ‘beautiful’, ‘unpained’.

Well, maybe this is the problem?
Maybe sufferers of Chronic Illness are feeling pressured to be something we are not; healthy.
Maybe this is what needs to change; I/we need to make our statements raw, and our photos as honest and natural as they can be, in order for everyone to stop and take notice of the bigger picture.

So, I have taken a ‘selfie’ every day for the past thirty days, to show you that appearances are not everything.
I am not “pretty” every day and I don’t even care.
But, mostly, I want you to see the fluctuation.
I want you to see the face behind the “makeup days”.
I want to share that there are MANY faces of Chronic Illness that aren’t often publicised.
I don’t get to pick and choose what days I am ill and unable to leave my house. I don’t get to pick and choose which events I have to cancel, or when my flareups decide to make place or for how long they last. You cannot make a solid judgement from the photos; you can only make ASSUMPTIONS.

And queue the non-sick raising their hands, asking, “but you were able to go out some days so why can’t you just push yourself to go out EVERY day?”

Some symptom days are just HARSHER than others.
The point is, I did not wake up CURED.
I felt sick the entire time, but some on some of the days the symptoms were just easier to manage than the others.

I have days where I walk down the street and you would not think that I was suffering with severe pain or nausea twenty-four hours a day… and then there are days where I look pale and pained; there are days when I run to the toilet, I can’t speak due to nausea and I’m curled up in a ball on the floor crying.

I want you to know that it is OKAY to have days where you don’t wear makeup, don’t feel like going out to see a friend, your hair looks frizzy, your skin looks like a dot-to-dot puzzle. It’s also okay to get a day where you feel well enough to get dressed up and do things, and to still come home at the end of the night being sick. It’s OKAY.

Take a look at my photos, and before you jump to drastic conclusions, assuming that I have magically overcome my illness overnight – let me tell you that I haven’t.

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