Nodular Prurigo ~ a hellish itch

I know I've not blogged in a long time.  This is a theraputic place for me to let out my thoughts when I've got something I need to get off my chest usually.  Earlier this month I was diagnosed with Nodular Prurigo, it's a horrible, chronic skin condition that causes an awful itch and leaves you with lumps, spots or nodules on your body.  I've been doing lots of reading and research and talking to other sufferers online and decided to do a few blog posts to try to spread awareness, help others and give me a record of how things progress.

The start of the itch and the road to diagnosis.

When I was a kid I spent every summer with blisters all over my hands, numerous doctors saw it and prescribed creams but I never got a diagnosis.  It stopped for many years in my teens then as I got older I started getting them every summer again.  It was eventually diagnosed as a sun allergy or Polymorphic Light Eruption.  This year they started earlier than usual, by April I had a lot but then I started getting more red spots on my wrists that then spread up my arms.  I tried different antihistimines, then got some prescribed by my GP.  All helped briefly then stopped helping.

They itched, they itched so badly I thought I'd end up tearing my skin off.  Then in late May my legs started to itch,  After a while spots came up every night when I scratched, my whole body itched for hours especially from the evening until the early hours.  Larger spots appeared on my legs, they turned into large lumps and spread across my middle and hips.  I was back to see my GP regularly, had blood tests, steroid cream and at the end of August I was referred to the dermatology clinic.  Five days of steroid tablets helped only very slightly.

I had my appointment at the dermatology clinic and came away with the diagnosis of Nodular Prurigo, moisturising cream, steroid ointment and antihistimines.  My daily routine now includes covering myself in cream when I get up, putting steroid ointment on the nodules and covering those spots and nodules that are sore or catch on my clothing.  After a shower the cream goes on again, then at night it's the same as morning. Antihistimines taken about an hour before bed, it's been bad this week so I'm on two tablets at the moment. Often I wake itching in the night so the cream goes on again to soothe it.  Sometimes my skin is hot and I end up getting up for a cup of tea to let my skin cool before the cream goes on.

Last night I slept well for the first time in ages.  It was the first time I wasn't awake at 2am in weeks, possibly months.  My average night involves being in bed and trying to sleep by 11.30pm.  If I do sleep I wake again itching anywhere between 12.30am and 1.30am.  Then on a good night I'm asleep again by 3am.  On a bad night I don't get to sleep until 4am or later.

A typical day of symptoms.

I itch, I almost ALWAYS have a itch somewhere on my body.  Some mornings I wake because I've scratched and caught a sore nodule and the pain wakes me.  Mornings are generally the best part of the day, I have small itches, normal itches that are a irritating my skin.  These are mild and easily to ignore when I'm busy and I can usually avoid scratching.  By mid afternoon it ramps up a level.  My arms feel like they are coming alive.  I was thinking yesterday how to describe the feeling I get, usually in my arms but sometimes in other places.  When it started I realised I can do that.  The feeling you get when you get goosebumps starting, when you can feel the hairs on your arms start to rise, that's what it feels like except you don't have goosebumps, the hairs aren't rising but it feels like they are.  It goes on for hours, I'm constantly aware of my arms or whatever part of me it is happening to.  That's the beginning of hours of discomfort on a bad day.

Next is the prickling some days.  That's harder to explain.  It's like there is a dozen tiny hedgehogs rolling around on your skin.  Sometimes in a small area, sometimes all over.  Hundreds of prickling sensations that make your suddenly jerk your arm or leg or need to touch or scratch desperately.  At night I can wake with my arm suddenly jerking or my back because of the prickles.

The worst itch in the world usually begins about 8pm, worse if I've had a bath or shower.  I love a long soak in the bath but have had to switch to quick showers most days because baths make my skin worse.  The itch starts gradually, I become aware that I'm itching without thinking and I try hard to stop doing it.  If I have a shower I put long sleeved pyjamas on so my skin is covered.  It's not just that the itch is constant at times, it's the worst itch I've ever known.  A normal itch is on the skin surface, you rub or scratch that bit of skin and it eases.  This itch isn't on the top of the skin, it feels like it's under the skin, at times it's almost as if my bones itch.  If it starts on my thighs it's a nightmare.  Being so fleshy it hurts to scratch it hard but at times it's the only way to get relief from it.  I've woken some mornings with lines of bruises on the inside of my thighs where I've scratched so hard in the night.

Before I started on my current regime I could scratch for up to 2 hours constantly.  Trying to sleep my arm would itch so I'd scratch.  Then it'd move to the other arm, then my leg, them my back, then feet, then buttocks, then back to my arm etc.  It would stop itching so I'd turn over and get comfortable and try to sleep again but a couple of minutes later I'd feel it starting to build on some part of my body that I couldn't reach from my comfy position so another hour of itching all over started again.

It was a huge relief to get a diagnosis.  I was so happy for a few hours then it sunk in that I've got a chronic condition that I could spend years trying to get control of and may never be free of.  I had a couple of hours feeling very down and sorry for myself then realised I need to learn more to try to get the right combination of treatment to get it under control.  As there is so little known about NP and much of the information is vague and theories I could spend months researching and I still won't find a magic answer to get rid of it. Luckily I found the NP support page and facebook group which has helped a lot.  Being able to talk to others who also have it makes a huge difference.

I'll stop for now, I could probably go on for a lot longer but I'll need to do more than one post about this as I find more information and come to my own conclusions about this.  I'll add the NP group address and a few photos of my skin at present.  If you got this far, well done and thank you.

http://www.nodular-prurigo.org.uk/npi/

The tide must turn.

I cried this morning.

In the past few days many people have had their eyes opened to the plight of refugees fleeing from persecution and wars in several countries.  Horrific pictures of dead children washed ashore after the boats their families were trying to escape in sank, whole families wiped out in minutes because they decided that an unseaworthy boat was a risk worth taking because the alternative was to stay in their home and risk an almost certain death.

It wasn't those pictures that made me cry, it wasn't the stories about these families that made me cry, it wasn't even reading more and more about the situations that these people are fleeing from that made me cry.

It was the comments some people were making in response to the above is what made me cry.  "send them back", "we can't take them, we're full", "let them drown", "shoot them", "torpedo the boats". 

WHAT THE FUCK?? 

I can't believe how many rational people I've come across lately who genuinely think it's ok to talk about human beings like that.  I've unfriended people on Facebook, blocked people on Twitter more in the past week than I ever have before. If you are reading this and follow me on Twitter or Facebook and think the comments I've copied above are ok or agree with them, please do me a favour and block me and fuck off under whatever rock you crawled out from under.

We are all well aware of propaganda being widely used across Europe prior to the second world war by the Nazis to spread hatred towards Jewish people and other minorities in order to justify segregating them and moving them into camps inciting violence against them. It took years for many people so see through their actions and realise what was happening, that they had appeared respectable and genuine in their acts to get rid of "undesirable" people.  So why are so many people generations later still being so blind towards the way they are manipulated by the press, by politicians and others who use propaganda to make people think the way that they want to, to make them believe what they are saying is the truth without them needing to question their motives?

So why are we heading down that road again?  Why have we allowed ourselves to be brainwashed into believing that these people are probably terrorists who are only trying to get to Britain and other countries to kill us?  Why do so many people believe that they're only after a comfortable life in Britain and that our benefits system will give them a life of luxury?  Anyone who believes the latter obviously hasn't tried to survive for long on benefits, it's certainly no life of luxury!

Some countries seem to have more compassion than others.  Germany is being held up as the front runner is taking in refugees, especially from Syria.  Perhaps they are the country that learnt the most long term about moving on from the second world war and never want that sort of persecution to happen again.

Take a look around you and see what you really have.  I work, I'm a single mum and at times it's a struggle to feed and clothe my family well.  Bills pile up, I struggle with debts but I have a roof over my head.  My kids are safe from persecution, they have an education and a FREE health service to call on for everything from a minor infection to a life threatening illness.  My kids aren't scared, they're not likely to be kidnapped, raped or killed at any minute.  I don't spend my days worrying that I may have to pick them up one day and spend a week walking a port miles away to get on board a boat that's dangerous just to possibly survive to adulthood. 

The British press and government have focused on the camps at Calais, referring to everyone in them as immigrants and not as refugees, making people think that they are there by choice, they could turn around and go back to where they came from.  They show healthy men trying to get into wagons, condemning their actions, focusing on the inconvenience it's causing British people and ignoring the fact that they are doing things that is very risky and has a good chance of leading to their death.
Thousands of people are dying and millions of people are sitting back and turning a blind eye.  Take a good look online, don't just ignore the stories because you don't want to or because you think it's all happening a long way away and has nothing to do with you.  People are dying because of where they were born, because of the family they were born into, because of the religion they follow.  It's happened before, it'll happen again but we can show more compassion and help.

It's taken my hours to write this.  So many thoughts, I rambled a lot, deleted an awful lot and rewrote the rest several times.  I had to miss out a lot of my thoughts or this would have been ten times the length it is now.  Sorry for any typos or anything that's a bit jumbled, I'm all ranted out now and need a coffee.

Our very special holiday

Tomorrow we are off for a week in a tent, given the weather so far this year I'll be taking plenty of jumpers, raincoats and umbrellas too!  Every year several families meet up via Special Kids in the UK, a charity that supports families of children with special needs.  I have two, one with Di George Syndrome and another with ADHD and autism.

The annual week in our field is bliss, our little bit of paradise no matter what the weather does.  Many members have profoundly disabled children, others, like mine, are active but often still hard work.  The rest of the year we are surrounded by people who think their normal is the correct one and those of us who have kids who look different or behave different are somehow to be pitied, pointed at or condemned at parents who can't control their kids.

That week in our field for many of us is the only break from that judging from people who have no idea what its like to live day to day with a disabled child.  In any one day there could be one or two autistic kids having a meltdown, screaming, shouting, hitting or swearing and no one worries, they're left to calm down and join in with everyone else once the dust settles.  Others may be laid in bed, ventilated while they sleep.  Others being watched carefully by parents and carers while they are having a seizure or recovering from one.  Often that means another adult will pop in and chat, bring a cuppa or just help entertain siblings,

A child who is in a wheelchair and unable to move isn't just left to sit and watch,  Many of the able kids spend much of their holiday pushing those children around the field, making sure they are as much a part of the community as anyone else. I know that within a few minutes of arriving my kids will get out of helping with the unpacking and putting up the tent by finding a child to zoom around with and go and say hello to everyone else in the field.

For that one week we have a special family, our annual commune, where we all have a different normal and where that's just normal for us.

Community spirit

At tea time today my son was the other side of town riding his bike in the local skate park. He's 12 and often goes off out alone or with his mates to play. 

Today he came off his bike riding over a jump, the metal bit that his pedal was attached to snapped as he landed and gashed his leg. He knew some of the other kids around but none had a phone so he could call me so he walked into town looking for someone he knew. 

The first I knew about it was a phoncall from a stranger saying that my son was with her outside McDonald's and had hurt his leg and was upset. She said a man and his partner who were in a van had offered to take him home or to the hospital but wanted to check that was ok with me. I asked that they bring him home so I could go with him. 

They arrived a few minutes later, dropped his bike off then offered to drop us straight up at the hospital. We spent all evening there and after treatment he is now fast asleep in bed. 

It's lovely to live in a town I can let my son have the freedom to go off an play without me constantly worrying where he is and if he's safe. He's a boy, he's going to get into scrapes and you can't wrap kids in cotton wool and keep them constantly in your sight. 

It's lovely that there are kind people about still who will stop when they see a child distressed and offer help. I know I would but you hear far too often in the press about people having no community spirit and about those that don't help. There are still lots of lovely people about. 

Overthinkers unite

My name is Carla and I'm a constant overthinker!  

I am unable to make a decision about stupid things without spending hours thinking about it from every possible angle. 

Simple conversations are replayed by my brain at stupid o'clock in the morning wondering if I made myself understood, wondering if I made a fool of myself, wishing I'd said something else or wishing I'd not said anything at all. 

If I make a quick decision I spend days convincing myself I was right, then intermittently telling myself I was wrong. 

It's tiring, my brain takes over and ties itself in knots and stresses and worries about the stupid little details other people probably didn't even notice. 

I'm not as bad as I was. I used to not do or say things at all for fear of doing or saying the wrong things. 

It's taken years to learn to live with my brain and the one thing that's helped is to finally realise at the age of 43 that I'm actually a nice person and for the first time in my life I like myself. I used to worry far too much about what other people thought about me, spent far too much time and energy on it. 

My name is Carla, I'm funny, naughty, cheeky, caring and a loyal friend to those that treat me right. 

Boobs

It seemed appropriate that as I started this blog to use alongside Twitter and Periscope I should focus on the pic I've become known for on my Periscope profile. 

At least once a year strange statuses appear on Facebook, it soon becomes clear its a "game" supposed to spread cancer awareness. They piss me off. Cancer isn't a game, it shouldn't be whispered about and talked about in private messages. 

Anyway, last year I posted the text further down the page to my Facebook along with a close up of my boobs. I also put it on Twitter that I rarely used at the time. Roll on March and I downloaded Periscope unaware that it would use my Twitter profile pic and I'd be unable to change it!!  

So there you go, the reason why my boobs are on Periscope!  I have a different pic to the original one I used on Facebook though. 

"There seems to be another one of these stupid games going around again. The sort when girls put up stupid statuses then whisper amongst themselves in private messages and pass on another stupid comment and say it's for cancer awareness. BOLLOCKS!  

It's great to spread awareness and if it starts conversations that's good but if you want to raise awareness do it with purpose and talk openly about lumps and bumps and not just with female friends. 

HERE ARE MY BOOBS! I check my boobs, I encourage my friends to check theirs. Men can get breast cancer too and need to check their balls and everyone needs to check out strange lumps and bumps all over their bodies. 

EVERYONE CHECK THEIR BOOBS AND BALLS! You could always ask your partner or a willing friend to help".

Hello new blog

Hello, welcome to the inside of my head!

I started this as a new place that's not under the noses of family and isn't restricted on character space.

Every now and then I find myself having long internal discussions with myself with nowhere to let the words out.

After much frustration with the Blogger app deleting posts from my old blog I finally managed to get here and start a new one!!!