Ran away with myself a little bit!

Hello,

Been a while since i have posted as life does catch up with you eventually, however another instance as where this disease stops you from getting on with life as normal. I have been lucky recently and have only experienced a few small flare-ups, but as always, that doesn’t last forever. At the moment I have a mass around the size of a 50p piece on my chest. Being pushed on by my bra and my clothing, nothing helps. The menthol trick worked for a while ( applying Vix vapor rub onto the mass and keeping it there with a bandage to numb the pain) but it can only work for so long. So here I am yet again, unable to leave the house and nothing to stop the pain. The purpose of this post is not to moan or whine but to keep a record of how often these masses come and go and how many bring my day to a grinding halt. To be honest i feel as if I may deserve this, started to get a bit cocky, was making plans of places to go and things to do, actually looking forward for the summer thinking I could enjoy it but have to remember that only because I'm ok and one day does not guarantee that I will be ok the next…

Thanks for listening,

XOXO

Why start a blog?

I've been thinking about this question a lot, why start a blog? Ive had a few people ask me in the past why did I start a blog about HS if it was something I was embarrassed about. I thought today I would answer that question. For many of us that have HS getting diagnosed posed a real problem, for me, I have had HS for 20 years, it wasn't until I was 16 that I had a doctor actually tell me what it was. I was told that they were related to diabetes (I didn't have diabetes) that I wasn't washing regularly enough or I was washing too much etc. All it took was one doctor to see the abscess and say 

"that isn't diabetes-related you have Hidradenitis Suppurativa."

All I got was a print out off google 
given to me and sent home with another dose of antibiotics. I was and continued to be very very angry for a long time about this, it still angers me today when I see how little is known about HS but at that time I was mostly relieved that somebody had been able to give me a diagnosis. Finally. But that didn't erase the 16 years of pain and confusion and it certainly didn't stop the HS. Over the next 5 years I had multiple operations, treatments, pain medication, consultations with plastic surgeons, pharmacists and tried everything I could from plain old paracetamol to Tramadol and Morphine and nothing seemed to help. I tried magnesium paste, Epsom salts, Vic vapour rub, nothing helped. By this time I was in University and not knowing one day to the next how the pain was going to be, I was ready to give up, give up University, give up going out, give up on my relationship I was so close to just quitting. The thing that stopped me was a rude, ignorant, vulgar women in an ASDA. Believe it or not, this is what stopped me. 

Me as a child

I was suffering really bad with an abscess on my lower back and was struggling to walk, we popped into an ASDA and I decided to get out and go to the loo. I walked to the disabled toilet and locked the door, on coming out there was this stranger stood outside the door glaring at me. I smiled at her and went to walk out the door when she started shouting at me saying 

"I should be ashamed of myself that toilet was for disabled people.! she looked me up and down "you're not disabled you can walk fine my son needed that toilet" (I removed the bad language but you get the point) 

Something about what that woman said was just the last straw I marched right up to her and started to inform her that, yes I can walk but not every disabled person is immobile, that yes i was not disabled but that I was entitled to use that toilet due to my condition and that I didn't need any comment or opinion from someone like her and that if she had a problem I would be happy to speak to her outside.
Obviously taken back by the fact I had confronted her, the woman did not follow me outside and looked very embarrassed indeed but it had annoyed me so much that she felt comfortable enough to shout at me in public, worst of all was that I had almost just walked away. That was a big wake up call for me and was right around the time that I and a friend of mine started talking about setting up a community in University for people like us, whose conditions and disorders aren't visible. That, in turn, led me to start a blog, I had been told that HS was a rare condition. However, through social network, I have found that it isn't as rare as I thought at all and that it affects 1 in 1000 people. I had to do a lot of research in order to find out what I know on HS, I had to speak to lots of different people and when you are newly diagnosed it can be a little hard to separate the fact from the fiction. I feel that if I could help someone newly diagnosed in any way whether it be through solidarity, providing information or just them knowing that someone is out there if they need it then I've one my part. My blog is trying to do just that, raise awareness and provide some sort of comfort to people who may feel like giving up and I think that's a great reason!

Thanks,
XOXO


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Easier said than done!

Google images

As many, many of you know HS affects every part of life from work and school to be able to get a good night sleep. We struggle with a lot, wanting to do something and actually being able to are two polar opposites when you have HS, one thing that seems to be a cause of anxiety for many of us is how to find love? and if you find it what the hell do you tell them? Today I would like to explain some of the ways that may help when you're starting a new relationship.

So I've heard many people, mainly women, ask over and over again what to do when it comes to dating? HS is unfortunately not well known which means when people initially learn about it there are some questions that need to be answered. But before we even get to that here is a scenario, 



You have been speaking to a friend of a friend and have really hit it off, your texting all the time, laughing at each other's jokes, it's all going great. Then its time to go on a date. A lot of people I know would take this opportunity to 'warn' the other person about their scars and HS and all the heartache.

Google images

 STOP!

You don't need to do this! There is no reason to dive into your full medical history with this person when all they wanted to do was go and see a movie with you. If the relationship blossoms great if not then you haven't just shared something very personal with someone you may never see again.

My advice would be to take your time, there isn't a countdown to when you must inform your partner take it at your own pace. Again, the relationship may not go very far so why tell someone something personal if they may not be in your life the following week. That being said if there is something there and you feel comfortable telling them, then trust your gut! Its all about when you feel ready to. 

Google images

When it comes down to telling your partner about HS, please, please, please, don't panic. I was petrified when I told my boyfriend imaging him walking out, hating me being disgusted and all that happened was he hugged me told me he loved me and asked what was for tea? The best thing I could advise is don't overwhelm them if you just sit them down where you are both comfortable and explain that this is a disease you have, this is what it entails, it's not contagious (that's always the big one), no-one knows why, there isn't any cure but there are a few treatments out there. Simply put, that's all there is to say, then if you want to go further, or they ask questions great, but I've heard so many people say they went in and told their partners everything about the pain the three stages the operations and packing and showed pictures and article after article all at a once and I think its just too much! 

Obviously, you will want to talk to your partner about all this at some point but maybe not all on one day in the space of 60 minutes? 

The last 'tip' i have today is to not build your hopes up. Now, this might sound horrible but I thought it best to include, thankfully the majority of people I know with HS are in loving relationships and their partners are brilliant. However it's not always the case, I've heard of partners breaking up with people over this, people being emotionally abused over it and even of someone publically announcing their condition trying to humiliate the person. All I want to say is this, HS takes a lot from us, but it cant take those we love and those who love us. If you are in a relationship with someone who candle handle your condition, it's their loss. They weren't strong enough and we deal with so much we shouldn't have to be strong for someone else. So good riddance! 

If anyone who is living with HS or is a partner of someone with HS would like to share their experience please get in touch by clicking here.

Thanks,

XOXO

The scars you can't see!

When I have been honest with people about my times dealing with HS, they always ask how I deal with the pain that comes along with it. What people don't understand and the part I rarely talk about is the mental health effects of HS. The pain I can handle (to a point) it's a physical thing, so I can try and override the pain... Try and ignore it, take painkillers, try and numb the area, you get the idea. All of this leaves scars but not just on my body.

There has been a lot of media attention focused on mental health awareness in the past few years and rightly so, with that in mind I would like to share my experiences in hopes that it may help others feel not so alone!

Living with HS, as I have explained, is extremely painful and when you live with that day in and day out it can weigh down on you and make you feel as if you are fighting a losing battle. You can wake up with a positive attitude and go to sleep beaten and trodden down. When this is your whole life, it is very hard to keep waking up positive. Some days it is damn near impossible to get up, knowing what is coming is just going to be more pain and more struggle, why would you want to start your day when that is that is waiting. The few people I have told this to have asked why not just go to the doctors and get medication? Well, there are two reasons. 
Reason number one, I didn't feel I deserved it! Why would I go to the doctors and take an appointment away from someone who really needs it? The doctor would just sit there and think why is she here? There is nothing wrong with her, she just needs to deal with it. 
I would think that there are so many people out there who need to speak to a doctor a lot more urgently than I do so how could I justify taking their place. And Believe it or not, that stopped me going for a long, long time. I could deal with this I just had to get a grip and deal with it! Everyone had it rough so why was I crying on about it? I was just being dramatic and weak! 
Reason 2 was that when I did go to the doctors they told me that they were reluctant to prescribe me the medication as I was too young (19) and they would prefer it if I tried breathing and relaxation techniques and exercise. Which okay, might work for others but when it had taken me a couple years to get the courage to visit the doctor, believe me, I had tried every relaxation and breathing technique out there and was doing exercise and seeing no benefits. When I finally spoke to a doctor who listened to me I was prescribed medication that helped me cope and get through that hard time in my life. It did not happen overnight and at some points, I felt like it never would but thankfully it did! Thankfully!

Coming out of that dark place felt great but unfortunately, although my depression had gotten better I was left with feelings of anxiety. When speaking with friends who have anxiety they all explain how they feel in different ways and have different triggers. I believe thankfully mine was/is not too bad but I would like to mention it anyway. 

When I had entered into a better mind frame and decided I was going to try and have as much of a normal social life as I could, one of the main things I wanted to do was go out with my friends, as every teenager does. Going to the movies, out for tea or just out looking around the shops. But I had a tendency of pissing people off with being late. Still, to this day, it is rare that I get anywhere on time and half the time (not all of the time) it is due to me being very anxious. Other times it's simply because I slept in or got caught up watching TV or something else that is completely avoidable. But sometimes it is just because I am far too nervous to leave. 
For example:
If we made plans to go out with friends the next day, almost immediately after making these plans I would start planning what clothes to wear. Might sound like a normal thing to do for a girl but I don't mean what would look pretty. When I plan what clothes I am going to wear it kicks off a whole process. I have to make sure that they fit perfectly, they cant be too tight in case it irritates my skin and causes a flare up when I'm out, they cant be too loose in case someone can see scars, they 100% cannot be a light colour in case I bleed on them or if an abscess drains in public and everyone sees. I cannot wear anything too short or too long because if it is too long I could trip over it and rip what I'm wearing and someone might see scars. Or worse I could trip over it fall and someone would be helping me up and the skin on one of the abscesses might rip and ill cry out. Also whatever I wear cannot have short sleeves because of scarring and too many people looking.. etc etc. 

This thought process is the first step in the nightmare that goes on inside my head when I agree to go anyway. This will continue on, second, third and fourth guessing myself over and over and over until after we have come home from whatever we had plans to do. It is mainly why the people who know me will rarely see me out of four particular outfits. Because I know those and I can trust those, nothing bad is likely to happen in those outfits. but I cannot remember having these thoughts before my HS got worse. I am not too sure whether this would be classed as anxiety but I have to do this every time to make sure I have every basis covered so if something goes wrong I'm prepared. I might just be a worrier, but when I don't get a chance to do this if I have to leave before I can triple check what I'm wearing it is hell! I feel like there is a neon sign above my head pointing down at me and that people are looking at me, I can't stop fidgeting with my clothes. I am constantly excusing myself and checking my clothes over and over to see if I have burst an abscess. I am praying that the movie goes fast and that no-one is hungry so I can rush home and get out of the clothes for ones that I should have worn. I am constantly agitated biting people's head off for no reason. Becoming snappy and just generally unpleasant to be around until I can get back home. 

And that is why, unless I am with people who I trust, completely. Enough to look after me if I need it or understand if I need to leave, that I try not to leave the house. 
I know it may not be the healthiest choice, but it is the easiest. And for now, at least, im taking the easy way..

Thank you for listening, I hope that this might help someone out there maybe feel a little less alone... I thought it would be terrifying posting this and I will admit I'm nervous but it does have a sense of relief finally getting it out. I would just like to add this link to the local Samaritans website. The Samaritans are a great charity that do fantastic work! So please go and have a look at their website. 

Thanks,
XOXO

The Harry Potter Tag

Anyone who knows me will know how much I love Harry Potter and it wasn't until earlier this year on my birthday that I got any of the books. I have watched and re-watched all the movies dozens of times and I adore the audiobooks! I have always wanted to go to the warner brother studio tours and hopefully, I will get there soon!

Favourite Movie?
This is a hard one, I don't really have a favourite movie. If I had to choose it would have to be the half-blood prince! The scene when Ron thinks he has taken liquid luck is so funny! 

Favourite Book?
My favourite book by far is the philosophers stone, its the beginning. When we all fall in love with a small, skinny boy, who lives under the stairs at number 4 Privet Drive.

Parts of the movies/books that make you cry?
Only two parts have made me actually cry... Dobby's death and Fred's death.. 

Favourite character?

Oh easily Hermione Granger, hands down! I always wanted to be like her, she is so smart and strong and without her Harry and Ron would not get far without her! GIRL POWER!

What would be your Patronus?

According to Pottermore, my Patronus is a red squirrel! Not exactly what I was hoping for but hey I'll take it against a dementor.

If you could have the resurrection stone, invisibility stone or elder wand which would you choose?

This one is really easy for me, the elder wand! So, if the elder wand is all powerful why would you need the other too, Dumbledore already says he can turn himself invisible without the cloak and I'm sure there is some spell to allow you to come back, right? Sorry, I guess I'm the person who would wish for more wishes!

Have you played any of the video games? 
Umm, I think I played the first PlayStation one when I was younger, but I'm not really a gamer so I gave up and picked up a book (i am assuming). 

If you were on the Quidditch team, what position would you play? 
Oh definitely, a beater! I adore rounders and tennis and anything where you hit a ball with a bat! Sounds like so much fun!

Were you happy with the ending?
Not really! I don't think Ron and Hermione should have ended up together and I would of love Harry to end up with Luna I think that would have been great!

How much does Harry Potter mean to you?
Harry Potter means a great deal to me, I remember watching the tape of it when I was younger! (Yes VHS tape) Hoping and wishing I could go to Hogwarts I think its what made me fall in love with the whole fantasy genre! 

So here it is the Harry Potter genre, if you are wanting to buy the films please click here. For the books please click here. Or if you would like to learn more about the Harry Potter franchise like the American schools and the family histories lease check out pottermore by clicking here.

Hidradenitis Suppurativa: The facts!

Having HS comes with a whole load of problems starting with trying to get a diagnosis. This post will highlight some facts and put to rest some myths! 


Hidradenitis Suppurativa is rare! -  Myth 

Although HS is not extremely common it isn't as rare as you have probably been told. In fact, 1% of the world's population are known to be affected, yes that again seems like a small amount until you realise that 1% of the world's population is  approx. 75,270,000.


Hidradenitis Suppurativa can be treated - Fact 

There is a lot of confusion when it comes to this subject, yes HS can be treated but as of yet, there is no cure! There are a lot of treatment options out there but unfortunately, none of them are known to work in 100% of cases. Antibacterial wash, keeping wound cleans and daily injections, the injections which can have very serious side effects, you can find out more by clicking this here.

Hidradenitis Suppurativa is caused by poor hygiene - Myth

This is a complete and utter myth. Although the cause of HS is not known, the one thing that all doctors and researchers agree upon is that HS has no link to poor hygiene. Keeping your skin clean is important whether you have HS or not, but cleaning excessively can cause more problems. When you clean your skin you are washing away germs and dead skin particles. Over-washing can cause your skin to become dry and cause the skin to crack and bleed. 

Hidradenitis Suppurativa can affect anyone, anywhere - Fact 


As I have said before, no-one knows what causes HS or why it only affects certain people within a family. What we do know is that HS can affect anywhere on your body that there is hair. ( I will be uploading a new post tomorrow explaining what exactly HS is and what it does that will expand on this) Meaning anywhere on your body, as we are all covered in tiny little hairs. The most common places for someone to experience abscesses are the armpits, groin and inner thighs. 

Hidradenitis Suppurativa is contagious - Myth 

HS wounds and scars may look unpleasant, but it is in no way contagious. The exact cause of HS is unknown but it is absolutely not contagious! It is not an STD, it is not a virus! It is a disease and it is 100% not communicable! 



Smoking and being overweight can make Hidradenitis Suppurativa worse - Fact 

This is a tricky one because it is technically true. When I went to see a surgeon about my HS he told me that being overweight and smoking would be making my HS worse. However, it would be making it worse by slowing down my wounds healing process. He told me that the stress I would be under trying to stop smoking would cause the same effects as smoking. Along with exercising to try and lose weight would cause more irritation to my skin than being overweight would. Of course, he told me that I should stop smoking as it would affect more than my skin i.e. lungs, mutation etc. and encouraged me to try a healthier lifestyle. Therefore yes smoking and being overweight does make HS worse, however, it is not going to be something that can be fixed overnight by changing these things!

That is it, I hope people found my facts and myths informing and helpful. If anyone has any questions or queries please feel free to contact me,

Thanks,
XOXO

Eris: A Fellow Warrior

This post is by a wonderfully inspiring lady named Eris, her words resonated with many of us and I just want to say thank you to her for speaking so openly, I don't know her very well but I am very proud to know her at all!!

Hidradenitis Suppurativa also known as HS, I have learned so much about you and living with you for most of my life. There is no way to get rid of you, there will be no day in which my body is free of you and your raging effects upon me. You make me sick, literally. My body is riddled with scars, my immune system is killing me, you drive my blood pressure up, and if that isn't enough you leave painful reminders across my body that we are connected. My body isn't enough for you. You lap at the corners of my soul like a horse getting refreshing water at a cool stream. Because of you, I have missed time with my family, time I can not get back. I have slowly pushed away from my friends because I can not keep commitments. Thank you for that by the way. I used to be so dependable, and now, I can plan nothing as you are always there. I am becoming a hermit. You keep me scared, when are you coming again, how bad will your visit be this time, what reminders will you leave me. My privacy is gone. I am the most private person in the world but there are times I have to speak your name, be poked and prodded like a lab rat by medical staff and lovers alike. But that is not enough, you have to be greedy, have to treat more people like this, and each one you do it differently, so that there is no peace. I have tried to get rid of you. God, how I've tried. I have had surgeries to the point my scar tissue does not allow me to sit very long, as well as limiting my mobility even once you have moved on to other areas. I have tried antibiotics, more than 50 people should ever take in their lifetime, creams and ointments, you name it, because of you, I bought it. Chemo, yup, been there, done that, stronger antibiotics, sign me up. Injection pens, all aboard. Bathing with bleach, showering 3 to 4 times a day, every diet under the sun and from here to the moon. I have tried and tried and still you haunt me. You think it's funny to tear down my self confidence, and gloat when my self worth and pride are bruised. I know one day, someone will find a way to eradicate you, and no one will know what it is like to live in your shadow. One day your name will be erased from the history books. Until that day, FU HS

If you too feel inspired by Eris then please click here to visit her FB page.

(i did receive permission from the person in question to post their work and contact details here before hand)