The Guide to Portrush, Northern Ireland.


Portrush, the small yet content town. However, it may be small, but it's quite beautiful and famous for it's golf and resorts!

Portstewart - 1960s


What is it famous for?

Portrush is the home to golf. Famously known, Portrush has been the home to majority of the Golf Opens, with The Royal Portrush Golf Club as it's host. The golf course has engulfed the town, with the majority of activities people take part in is drinking or playing Golf.

Eating Tea at 55 Degrees North, enjoying the view.

Attractions:

Pubs and Restaurants - No matter where you go, you will always find a pub in Portrush. Even a pub next to a pub! Sounds quite typical of the Irish? Well, Portrush is a community. Everyone knows everyone, and all the pubs are social places. Whether you drink, want to watch golf/football or sing on karaoke, this is what it's for. And the food at the restaurants is amazing! Most have unique menus, and usually offer amazing food with an excellent option of choices and drinks.

Examples:

Springhill Bar.
The Atlantic.
Harbour Bar
Kiwi Brew Bar
55 Degrees North
Ocho Tapas

Ramore Seaside Restaurant - Chicken Tikka -  10/10

Barrys - Barrys is an amusement park in the heart of the seaside town. It includes many rides, and no matter what age, you can always rely on having a good time at Barrys.

Kellys - Kellys is a caravan park, situated near the golf course. But on Kelly's land is a small night club. Infamous for pulling, getting rotten drunk and having a great night out! Once you visit Kellys, youve officially been initiated into adulthood.

Majorly Cheap Parking!



Dunluce Castle - Home to the Greyjoys! )Top Fact: Part of Game of Thrones was filmed at Dunluce Castle) (Dont believe me, google it!). It's a beautiful castle, not only used for Game of Thrones but also inspired The Caire Parivel of the Chronicles of Narnia.

Coleraine Football Club.


Amusements - Not only are there many pubs, you can never walk past an Amusement Centres. Some include the Wacky Workshop (similiar to the Wacky Warehouse). Includes a ball pit, but other amusement things such as coin machines and other cool stuff!

A casual walk along the marina..

Why am I writing about Portrush?

Well of course I come from there. Yes I live in Liverpool, but my heart and family are in Portrush. They do say "home is where the heart is". It's such a beautiful relaxing place. And it's known seaside towns are the best for asthmatics. I swear me and my boyfriend felt we could actually breathe while we were there. Dont forget, my dad's side of the family live there. Theres so much family history over there, and I feel welcomed there, in the pubs, anywhere, just by stating my name. Compared to Liverpool, even though I love living here, Portrush will always be the place I want to be. 



- Amylou

What are Invisible Illnesses?


So as you will know, I myself have been going through diagnosis for 2 years now, and most of my illnesses are invisible. But there is alot of stigma attached to those who are disabled yet it is unseen. Those people who need a wheelchair part time, those on countless amount of medication, those people are not just abusing the NHS or the Health Systems, they are actually ill, and the abuse and ignorance of other people make them feel they should hide away. Hence why I'm writing this blog post.

What is an invisible illness?
An invisible illness is a condition in which people may look normal most of the time, but may have problems internally or unseen by the naked eye. The conditions are usually chronic and life lasting, and some can be life-threatening, or excruciating. And most people forget, that mental illness is also an invisible illness.



Examples:
- Endometriosis
- Fibromyalgia
- Hypermobility Syndrome and EDS.
- Irritable Bowel Syndrome/Disease
- Chronic Fatigue Syndrome
- Chronic Migraines -
- Lupus
- Lyme Disease
- Arthritis
- Mental Illness
- PCOS
- Cancer
- Primary Immunodeficiencies
- Asthma

I bet some of you have heard of some of these? Don't seem that important right? Or maybe you have, and you yourself have a debilating invisible illness. Or a family member does? Do you know their impact? Or what stigma can really create?



Heres my full story...

Since I was around 3, Ive been in and out of hospital, if I was ever discharged, I was simply brought back in. It all started with an Asthma diagnosis at 5 years old. This took 2 years of breathing tests, blood tests and all sorts. They just didn't understand why I would wake up in the night only 3 years old, panicking, feeling like my chest was caving in. It also didn't help that I was too young to even tell them what was wrong, and it all came down to Asthma. Ever since then Ive had a profound fear of needles. (You'd think getting ongoing blood tests or injections would make me used to them, but no it just made me even more terrified, especially with being so young and having to be held down) 

So then 10 years later, I started having digestive and abdominal problems. I started my period 2 years prior to this (Apparently my body has a 2 year delay system), so I pushed my abdominal and pelvic pain off as period pain, but the digestive problems were horrible, I felt I couldnt eat anything without feeling bloated and nauseous. After various tests I got diagnosed with IBS, it wasn't surprising since it runs in my mum's side of the family. But something still wasn't right, I had major aches and pains in my joints, anxiety, I could barely write. I had to have a special keyboard in school sometimes, as it was just too hard to write, especially in timed conditions. I got referred to a rheumatologist, and was told I had Chronic Joint Pain Syndrome. I was told it is a form of Childhood/Juvenile Arthritis, and is also related to Joint Hypermobility (I don't have this, but it wasn't surprising when my niece was diagnosed) Arthritis was another thing that ran in my family, especially since my Dad had it. The worst thing was, the doctor told me it was due to being bullied, after assessing me. My body was aching due to the fact I had been smacked/thrown thing's at, and it wasn't processing normal activities, and causing " my body to be anxious". It can also create sleeping problems and cause a period of depression. My sleeping pattern was either never sleeping or sleeping for 20 hours. There were times I would go into school with no sleep, I was surprised I could stay awake for so long. He told me by the time I'm 16, I should grow out of it, and if I don't I have to come back. After a year of strong NSAIDs and other things, the pain did stop, however once coming off all the medication, the pain came back but worse. I had to teach myself how to write or type in a quick fashion, otherwise if I didn't, I wouldn't get any work done, if I typed fast enough, then I'd get more work done and little pain. I never told my parents the pain came back, as I was a "hospital child" and I hated my parents going through so much with me, my siblings never went through this much. I just told myself it would go away. Over 3/4 years later (now 18 years old) they believe my CJPS was the start of a condition called Fibromyalgia and the Insomnia I had alongside it must be Chronic Fatigue Syndrome, which is very common alongside all the things I already have.

Then I turned 16, and my abdominal pain was worsening, I just started college and found my boyfriend, and I thought everything was great. Then 2 weeks into college I woke up one morning and couldn't move. I managed to force myself in agony to the toilet (I have a weak bladder), and once I got on that toilet, I told myself, that I wasn't moving. I had to be forced to the hospital, and admitted to a surgical ward. I did various tests, I was told one minute I had appendicitis, then an eptopic pregnancy, then an ovarian cyst. The tests didn't bring anything back, so I was told they needed more blood samples and wee. I was so weak, the needles made me sick and pale, and constantly weeing really hurt my bladder. I was told it must be appendicitis, and I would have to have surgery as soon as. This was another one of my fears, never having surgery before, I panicked, kicking off my asthma. I was told since I was 16 my mum could be with me 24/7, but I asked her to go home. The next day, they came in and told me I would need an IV as I wasn't eating and needed fluids. This also triggered my asthma, I refused, and threatening the doctor (Oops!) he said I dont actually need it. Then the surgeon came in, and told me my blood tests came back, and I indeed had a hormone inbalance. Apparently my body reacted badly to the birth control I was on, messing up my body chemistry. They told my oestrogen was through the roof, and I now have to go through life mostly emotional and moody like a young teenager. I was furious, this pill was suggested to stop my pain and now it would make me worse as a person. A few months later, after being put on another pill, nothing had changed. Hence my endometriosis journey had started. I was told aswell, I had Depression Associated with Physical Illness. I wasn't surprised as I spent most of my time in my room, or crying myself to sleep. But I did not class myself as fully depressed, my depression was due to my symptoms, there are people out there who have actual depression, and I did not want to abuse that term.

2 years later, I had my surgery to diagnose Endometriosis. The story can be found: 

http://chronicallyroyal.blogspot.co.uk/2016/05/my-first-surgery-and-tips-29th-april.html 

Before all this endometriosis journey started, lets go back to when I was younger. I was told from a young age, I was a very sick child. Going the hospital due to bladder problems, I've had tonsilitis atleast once every 6 months since I was young, and other various infections. A few months ago I had various tests done to test my immune system. I was fobbed off, "She has nothing wrong with her anyway so don't expect anything". They did more blood tests, and a week before my surgery, I was told I have signs of a primary immunodeficiency. As there are over 250, they said the most likely one is CVID (Common Variable Immune Deficiency) as I had all the signs, but they weren't sure, and needed more tests to be done. I have also been referred to a gastro, due to the findings in my lap, as they believe I may have an IBD, Polyps, an Ulcer or Heammaroids, this is alongside a Urologist, to check my bladder, for UTI, Cystitis, OBS and other things, as there have been alot more problems there (and you can read more about that in my post The Sigmoidoscopy and Me).

More updates: 

This is my life as an invisible illness child, and I'm not the only one who has had to grow up like this. Many people don't find out their problems till a later age. And most invisible illnesses run in families. 

My Mum - Chronic Migraines, IBS, COPD and Chronic Back Pain.
My Dad - PTSD, Osteo-Arthritis. 
My Niece - Joint Hypermobility Syndrome, Hypertonia, Anxiety, Possible IBS.
My Nephew - Possible IBS.
My Grandad - Everything I have plus a B12 deficiency, aneamia and Arthritis.


Isn't that strange? Not really. 

As Ive had a long and hard process, I wanted the word to get out. Disabilities can be invisible too, and usually it is not just one. People have a full list of them.

So next time you see that girl get out of a wheelchair, and walk to something, don't judge. Or you see a man who looks quite abled and normal, pick up a whole bag of prescribed meds, dont judge. Or when you see that person fall over or being sick, and blame it on her being clumsy or acting drunk, dont judge. You don't know what's going on in their lives. Nor should you do it if it is an actual person.


For parents:
- Understand your child will have good days and bad days. Being chronically ill can seriously tire someone out, or they may lack motivation. Telling them they're "lazy" "stupid" or asking them to do things, can really make them feel worse. Try to ask them politely to do certain things. It's also quite obvious when they are having a bad day, be sure to look for certain signs (laying in bed/staying in their room, not eating/drinking, needing their pain meds, asking for attention, crying, picking at food, not seeing friends)

- Be sure to do your own research on your child's illnesses. Understand what they feel like, or even ask them how they feel. Don't try and step on egg shells around them but try to understand if they refuse something or are acting strangely, it's not that they are trying to be a "tempered" child.

- Go to appointments. Sometimes for young people, they're too scared to talk or may get "white-coat" fright, and not mention everything wrong with them. Also doctors are 10 times more likely to listen to a parent than a child, so try to always remember your child knows their own body, so listen to your child.

For Friends:
- Respect they can not always do what you do. They may cancel plans, may not be able to go certain places/restaurants, and they don't do it on purpose. 
- It is not special treatment. Most chronically ill people do not want the extra attention but may actually need it to feel better about themselves. For example; in school, may get more time on an assignment.
- It is not a competition. If you have an illness/illnesses yourself, and your friend gets diagnosed, it is not time to tell them how better they have it then you. Someone with one illness, may have it worse than a person with over 2.
- Do research yourself. See what symptoms your friend may have, so you can analyse when they're having a bad day. 
- Be careful what you listen and hear. Sometimes jealousy of the extra attention can spark rumours, if you were a real friend, you'd listen to your friend. Understand, that to a certain extent they may be a little different or distant. And if they tell you something, keep it to yourself until they tell other people. It would be the same if it was vice versa. 


Do you have an Invisible Illness?

Share your story with me in my comments, or join my groups linked up below. I created my blog and my groups due to the fact Ive had to go through most of my health problems alone. I havent had someone whos going through the exact same thing as me. But once I went online and joined groups, liked pages, I got the confidence I needed to not be afraid to ask for help, or talk to people about my problems. Ive also realised why should I care about what others think? I know my own body, and they dont. I know I'm ill, who are they to say I'm not? Who are they to say you arent? Come join us!




(Links are attached to the writing below)














Thanks for reading!

- Amylou

@chronicprincess@outlook.com

My First Surgery and Tips! - 14/05/2016.

My first surgery - 14th April 2016.

So as some of you may know, my surgery was scheduled for the 21st April 2016. Due to a cancellation, it was moved forward to the 14th April, I literally found out 2 days before! Yikes!

What was the surgery?
The surgery was a laparoscopy. This is a type of keyhole surgery, in which surgeons use to help diagnose things (such as endometriosis, irrital bowel diseases etc). 

It includes being put asleep, being filled with gas from the bikini line, and a camera being inserted through the belly button. A simple procedure includes 2 incisions, but sometimes it can be up to 5, to get different angles on things. There are two types of endometriosis removal however during this procedure. Ablation - This removes the top layer of the endometriosis, allowing for it to grow back but will be slow (usually people need surgery within a year of eachother with ablation). This is usually performed by your Gyno, or one of his consultants. Then there is Excision - This goes to the roots and depths of the endometriosis, creating a more permanent removal, but is not a cure (usually people will need surgery within a few years of eachother with excision) This procedure is usually performed by an Endometriosis Specialist.


How did it go?
Well lets say I was seriously disappointed. I was told at my pre-op, I would have a specialist from their "endo" centre, who would be able to spot endometriosis clearly and remove it through excision (permanent removal) compared to a gyno who would only be able to do ablation (short term removal). I got there for 7am and was told the first surgery starts at 9am. I was also told my mother couldnt come in with me, while waiting. I found out this was a lie, as other girls my age were able to bring their mothers in, I really could of done with my mum being there, as I was quite emotional. 
Anyway, between 7am and 9am, you meet your surgeon, his team, anaesthetist, human resources and after care nurses. My surgeon seemed lovely, but there was something that screamed "confused" when he spoke to me. He wasnt a specialist or a gyno, he was a general surgeon. A GENERAL surgeon. He was planning to do a tonsil removal before me, then eye surgery after me. This did not make me confident. Also, it said in my notes "possible endometriosis, has a weak bladder and irregular and heavy cycle" he read this, and then asked "so are you here today to check your bowel?" It seemed quite dosy to me that he asked this. Nevermind what I find out after surgery. Also, his exact words to me were "I can only WASTE half an hour on your surgery, as I have other surgeries to do. So if I do find something, no matter how severe, I will not be able to remove it in that time." I think this is major neglet, what if i had stage 4 endometriosis? What if there was something extremely serious? I was majorly lacking confidence at this point. My anxiety was high.

So, as Im a needle-phobe and asthmatic, I was to go second after a diabetic girl who was getting tonsils removed (diabetics get priority.) I was quite happy about this as it meant I would be home quicker. I went into surgery at 10:30am. The anaesthetist was lovely. He understood my fear of a canulla, and told me he would give me a children's needle, make sure i have my inhaler before hand, gave me oxygen the minute i walked in, and held my hand when the needle was inserted. He was amazing, I wish i remembered his name to recommend him. Anyway, that was the last thing i remembered before I was knocked out.
11:30am - I woke up. Surrounded by nurses, with a IV and my oxygen mask on. I was so confused and tired. The nurses asked me what I was on the pain scale (1-dreadful, 10-perfect). I was a 100% 1. I was given alot of morphine at that moment, once I was around a 4, I was wheeled to the ward. I felt as if i was "full" my stomach hurt, and i felt extremely uncomfortable (especially the fact i went into surgery with underwear on, and woke up with it off!) Anyway i was forced to eat some toast, even though i really didn't want to. I swigged a large amount of water, due to having oxygen for a long time, my mouth and throat were extremely dry (during surgery, the mask turned into a tube down my throat so of course i was dry.) The girl who also had a laparoscopy was wheeled in next to be within the next half an hour. She told me the surgeon told her, he didnt even know what endometriosis looked like, as hes not a gyno but just a normal surgeon. This made me so scared to see what he found, or if he did find anything. I didnt want to be made out to look like a liar, as ive been judged for the last 2 years.
So after 2 hours, the surgeon came to see us. He told me he didn't see any type of growth that could of been endometriosis (am i surprised?) but that doesn't mean I dont have it. He also saw I have a "largly dilated bowel." And then went on to talk to the next person. I was still drugged up on anaesthetic and morphine so it just made me even more confused than before. What did he mean? Is it serious? Moreover, I was the last person to leave the ward. I had no phone, and they expected me to contact my mum even though I was completely out of it. Before I could go I had to go for a wee. (TMI) I stood up, and there was blood all across the bed, apparently this is normal for 24 hours, so I just ignored it. I could barely walk (normal) but got to the toilet. I was stuck on the toilet for 45 minutes. 45 MINUTES! I got told if this continues to happen after a week there is a problem (update: 2 weeks later it is still happening). And I got walked out to my mum and boyfriend. Gosh I was so emotional, I just wanted to sleep.
So over the past 2 weeks, nothing has gone right. The average time for recovery is:

3 days to walk.
1 week to go back to school/college/work.
3 weeks till full recovery (depending on your BMI) can be up to 6 weeks.
I was told due to my height, I may recover abit slower (im alot smaller than the average height) and due to being extremely sensitive. But I never thought it would be this bad. It still takes me 45 minutes to wee, making me feel paralysed. I can stand up for about 5 minutes, I get tired so easily with the slightest of movement, Ive lost all sense of appetite, Im extremely emotional and Im still bleeding. 
Do I regret surgery? Yes. But this is not the case for everyone. Alot of people have a good experience with this type of surgery. Just I did not, and it's due to the lack of education in the surgeon especially, and the fact something must of went wrong with the surgery as I feel worse than I did before.

Do you have a laparoscopy coming up? 
Before my lap, I asked some advice from people I knew who had this surgery done previously and they gave me some advice, and some things in which to have with me during my time in hospital, and after.  I took a dressing gown (this would be as I had a hospital gown on, I didnt want people to see my behind), some slippers (these you dont really need as the hospital provide you with surgical socks), magazines (the waiting time was up to 2-3 hours, although I was basically waiting for an hour, a magazine did help), a cute hospital bag (to store stuff in, like pyjamas, clothes i would go home in etc, incase i stayed in I brought my typical daily stuff) then for when I got home, my mum bought me loads of food (typically dry food as I had a bloated stomach, but I chanced some 7up due to be completely drowsy, and lack of sugar in my system.), my 3DS (Animal Crossing keeps me distracted okay?), a medication bag (I was given one by the hospital, but you can buy some cute little pencil cases/bags from H&M to store them in)





Various Magazines and Puzzle Books for Waiting.


Slippings - Extremely Comfy - Matalan - £3


Hospital Bag - Primark - £10


Animal Crossing New Leaf and Happy Homes Designer
White Thin Dressing Gown with Fluff Lining on the Inside - Matalan -  £10

Tips
I never recieved any after-care after my surgery except a bag of very strong painkillers, so I rather someone get the tips I got afterwards, before.

Before/Just after Surgery:
1. Be sure to meet your surgeon. You should meet him/her and the rest of the surgery team before hand but sometimes the surgeon may be off somewhere preparing, always ask to meet him. It can help calm your nerves and be sure he's professional.
2. If you have any fears/phobias, tell one of the nurses you see. They will write it down, and then you will see your chaperone/anaesthetist. A chaperone is someone who will stay with you during the surgery at all times (mine was my anaesthetist aswell!). They can be sure you're as comfortable as possible the whole way through the procedure, and during the ward process. 
3. Try and get someone to stay with you. I was told my mum wasnt allowed to stay with me, but others were told they could. This made me seriously panic. So always check if you take someone with you, they can be with you right up until surgery.
4. Once you are out, they will ask you, what number you are on the painscale. No matter what, if you feel fine, say you're the lowest and in alot of pain. This will result on morphine, although you may not feel you are in pain, the morphine can help you relax incase you do eventually feel pain.
5. You MUST eat,drink,walk and wee before being discharged. If you feel lightheaded/dizzy/extremely sick, tell a nurse, you will not be discharged if you do not feel right. 
6. Before going home, ask questions. The nurses will be busy attending to others who would of just been brought in from the operating room, but there are always nurses on hand to walk you out, so you can always ask them.
7. Bring clothes that are loose and comfortable. I myself, just brought pyjamas and walked out in them. They were elasticated and comfy. Why would anyone suffer without pyjamas?


For at home:

1. Do NOT lay flat once home. It will be a pain in the bum getting up, you will need help getting up whether youre flat or not, but it alot more hassle, as you are using your abs when getting up. For atleast a week, try to lay with atleast 4/5 pillows (I myself had 8 pillows but each to their own!), Then try and have one on your stomach, this seems to help I had no idea why! You may have to buy spare pillows or use some, but it's worth it.
2. Do not worry about being emotional afterwards, it can take between 24-48 hours for the anaesthetic to leave your system (even though my boyfriend always says it lasted a week to wear off for me...I have a hormone imbalance the idiot!)
3. Stick to plain food afterwards, your stomach is already bloated, you don't want to aggrevated. My personal favourite is plain chicken strips (Asda's Own) with boiled rice. Try not to have anything greasy or seasoned foods, atleast until your bloating has gone down, or 3/4 days after.
4. You will have issues during the first 24 hours (dry throat, back/shoulder pain, insomnia, bladder issues, bowel issues). Do not panic. It can take up to 5 days before your bowel empties due to all the gas, this is normal. It can take 24 hours for your bladder to not be in shock from all the movement, and the pain you're getting is normal as the anaesthetic wears off. If these sort of things happens a little over a week, go see your GP. I myself now have an infection and have to be referred to a gastro and urologist specialist, because something has gone wrong during the surgery, and I have to be seen to (never mind this is after 3 weeks!). Also it is very likely you will get dissolvable stitches (this means they are inside of you, and come out naturally). Sometimes the body has a reaction to them and can cause problems, Be sure to get checked if you have any abdnormal pains/feelings.
5. The average timings of recovery: 2/3 hours = Walk. 3-7 days = Go back to school/college/work. 3 weeks = Feeling completely yourself again. 6 weeks = Scar should develop. How ever everyone is different, as for myself it's been nearly a month since, and I dont feel any better or recovered.
6. Be greatful for the people you'll have around you. You can't be alone for atleast 24 hours, but I'd say at most 4 days, as it can be tiring doing things for yourself. My boyfriend and mum helped me alot, cooked me food, changed my clothes and dressings for me, and Im not going to lie, I was very emotional and frustrated at myself for going through with the surgery so I was always angry but I appreciated what they did for me.

So I hope that's helpful. I ended up writing this like a month later after my surgery as I've been constantly tired, and my recovery has took alot longer as you guys know! I hope you enjoyed reading! Have any questions? Dont hesitate to contact me!


- Amylou


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Last Updated: 16/05/2016