Of recent days - an update

Recently I have had quite a bit happen.

I was voted onto the student council but not only that... I was also voted as Chair of the Student Council. I am excited and nervous about this but my excitement overrides my anxiety.

It also seems that I have broken my hand... Although the doctors aren't quite sure.

Other than the fact that I haven't been too well this week I think I'm actually enjoying college :)

Yay...

*huggle* for everyone!!

More A&E Fun

Last night I ended up in A&E again all because I pulled a plug out of a socket.

Before you conclude on the reason this happened I should tell you that I was NOT electrocuted.

I managed to tear a ligament (ligaments aren't my friends) and pull or tear a ganglia as well. It seems that my body makes something out of nothing :( how rude!

The doctor wasn't very sure as to what I've done to myself and I didn't have much faith in him. e told me I could go but after that he chased me down and said that he'd be happier if I had an x-ray. No break or fracture.

I now have to wear a splint... not sure how long for.

A Time I Wish I Wasn't Disabled

Today was a college trip to the cinema (I know, best thing ever) and I thought everything was sorted... The college can't allow me to take one of their wheelchairs outside of the grounds which was fine because I have my own... the only problem is that it's a self-propelling wheelchair and I'm still not very well from both the car accident and the oscopy.

I told the LSAs (Learning Support Assistant) that I couldn't push myself today so I fore-warned them and yet again I reminded them this morning...

A few minutes before we all left for the trip Pooey McPooson (the woman in charge of disabled students) came and found me and started yelling at me for not telling them before hand; when I told her I did she said "Well, I going to check that", she continued to yell at me and she said "I should not let you go on this trip but your teacher has kindly offered to push you". She made me feel thoroughly disabled and small.

On the way there I think I was kind of rude in the cab. My teacher came with me in the cab but a mix of being yelled at, being hurty and loads of bumps in the road lead me to tears so I put my earphones on and stared out the window whilst I cried.

When I got there my teacher, who I usually find annoying and pooheaded, came to check on me and I started crying again. He told me not to worry about it and I apologised and he said that I had nothing to apologise for.

On the way back I was my normal cheery self with two of my other teachers chatting away. I told my mum about it when she picked me up and she felt she had to complain... everyone agreed with her (it seems noone likes Pooey McPooson) and they were sympathetic about it all and it seems I got the boss of the LSAs in trouble too... Thing is she, Pooey McPooson, is his boss so there's nothing he could do but he and they empathised.

*huggle* to everyone!

The Day After

Yesterday I had my oscopy and it made me quite unwell...

I had a sore tummy and hip (still do) but today I haven't been at all well. Floopy, hurty, sicky, etc...

Yet I still found a way to do my sister's boyfriends birthday card (which took FOREVER but he loved it) and I managed to finish all my work, I made it look extra pretty :)

I know that POTS hasn't caused all my problems but in conjunction with them all it makes it a bit sucky for little me.

*huggle* for everyone!

Hospitoscopy

Today I had my O-scopy and I found out which one it was, a Sigmoidoscopy. My tummy doctor asked for this because I have ALWAYS had tummy problems.

I had an enima, which I guess was useful but I wasn't a fan... The o-scopy itself only took a few minutes and apparently it's all good, but mighty uncomfortable.

It has left me all sore and hurty like they scratched me inside my tummy.... I didn't notice it at first because I asked them to sedate me because I was anxious about it. :(

*huggle* to everyone!!

Oh the Scopy

Just a quick one;

I have some sort of a 'scopy' later today...

I'm a bit nervous about it, no sure how it's going to go, how I'll be after it or what the results will be.

My mum has moved stuff around so that she'll be with me in the hopdidoodle, but I'm still a tad nervous.

I shall keep you posted (get it :P)

*huggle* for everyone!!

Pills with POTS

Sorry it's been a while...

After the car accident I've been a bit swamped with work and hospitals (a few more than normal).

I can't say too much today because I should be working but I wanted to say a few words.

Since I last posted I went to see my POTS doctor again and he put me on pills... something called Fludrocortisone, it's to help me with my liquid in take or something. I apologise for the vagueness but I wasn't feel all too well the day they prescribed it to me so I wasn't paying too much attention... Luckily my mum was there and she listened to all of it whilst asking a million questions.

Fludrocortisone is a steroid so now I have to carry a Blue Card.... It's, supposedly, similar to a medic alert bracelet.

I've been on this tablet for about 3 weeks and I'm not sure it's making much of a difference, it's actually making me feel even more nauseous than normal :-(.

Why can't they make me better without making me feel worse?!

Today I did go to the GP and they prescribed me new anti-sickness/nausea medication.

Hope everyone is well.

*huggle* for everyone.

Boom

I'm sorry I haven't blogged in a few days, but I have good reason. I promise.

I was in a car accident on thursday afternoon. At first both me and my mum seemed alright but later that afternoon and evening we starting to get hurty. We went to Accident and Emergency where we spent about 4 hours plus waiting to be seen.

My mum hurt her neck and shoulder (which got worse yesterday) and I hurt almost the whole of my left side. Mt neck, shoulder, ribs, hip (which is the worst and has been ever since) and my foot (but we know that's unhappy any way).


Now I am unable to sit, it hurts my neck, shoulder and ribs to move my left arm and I look like Quasimodo when I walk.

With all of my illnesses, aches and pains the hospital had to be very careful when trying to help me.

I blame the ambulance. What happened was; I had finished college for the day so my mum picked me up. My foot was swollen so I took the boot off and had it resting on the shelf, in the car, under the glove box; because I was knackered I fell asleep (more dozing really) Mummy got to a red light; just as the light changed and we pulled away an ambulance pulled out of a side road with it's siren going. Mummy had to do an emergency stop and the car behind us was changing lanes and didn't see mummy stop. He slammed into the back of us.

Mummy's glasses flung off her face and hit the windscreen. My wheelchair, that lives in the back of the car, hit the back of my chair (which, probably, had something to do with my hurties).


I had x-rays and nothings broken for neither me nor mummy. We are just bruised, bashed and have a few torn ligaments (which, considering my history, isn't my favourite thing to happen) and mummy has a stonking headache. Hopefully these alements will be all gone very soon. :(

Hospitals aren't my friends!

*huggle* to everyone

First Day Back

Today was my first day back at college and, although it was nice to see everyone and it felt like we were gone for a weekend not a whole summer, it was a potsy hurtsy day.

I did explain to my teacher that I've been diagnosed with POTS (I then continued to explain - in the simplest form - what POTS is) and I explained that I need to eat every two hours. Last year if we had food in the classrooms we were asked either to finish eating it outside the room or chuck it away. Now, he understood and, he agreed to let me eat (without making me leave the classroom).

Somehow I managed to hurt my foot quite a bit (that's the hurtsy part) and I got floopy (that's the potsy part) and have been for hours.

*huggle* for everyone

My Potsy Life

So far (considering I was only diagnosed mid july) I am not on medication for POTS.

I have been told not to consume caffeine, wear the tight sock thingys and use a stress ball when I start to feel faint.

This makes my life a bit difficult.

I don't remember much from that consultation when I was told I have POTS but the doctor didn't explain what POTS is and how to control it. He wants to try the non-medicated route before putting me on medications.

I looked it up and read A LOT of things. I know that I have to try not to do too much otherwise my heart rate will rise. I'm having to be careful with everything I do... (and don't do).

At the moment, that's all I can do. Even doing that... it still happens.

I think, no I know, I want to be on the medications so that I won't have to be as careful as I am having to be now.

Meds or no meds?

*huggle* for everyone

Out In Public With POTS

Having POTS, unfortunately, means fainting or " the tingles' ". With POTS fainting (or almost fainting/the feeling of about to faint) is a given.

I have been given a wheelchair to help me when I'm out but you can't go EVERYWHERE in a wheelchair (at least not just yet). So, we have to work out how to cope. This means that we need to sit down A LOT, drink lots of fluids (preferably water or energy drinks [caffeine isn't good for me because of the form of POTS I've got and from research... it isn't good for a large number of people with POTS]) and add salt to all your meals (unless you have been told not to) but don't add it to your dessert... that's wrong and gross.

You should stand still, in one place, for too long because; 1- you will start to feel faint, 2- the blood will start to pool in your extremities and 3- it may start to hurt (sort of).

Even when/if you're in a wheelchair people will still talk, especially when you have an I.D. because they don't see a visible reason for you being in a wheelchair.

I'm sorry to say that there isn't a way to stop this.

We can either; shake it off or try and help them to understand.

*huggle* for everyone

The Arrival Of POTS And The Loss Of Friends

Over the years I have lost A LOT of friends.

I know it is because of my illnesses and the frequency of catching whatever is going round (I've had Chicken pox 5 times and hand foot and mouth 4 times).

Unfortunately, with any illness, people can't cope, can't understand or can't be bothered to hang around. They cut themselves off from you, as if you did something wrong, because they don't want to have a friend that requires them to put in effort to see you or keep in touch with you when you are ill.

When I am feeling not-so bad (it comes in waves) I try to hang out with my friends but I get tired out quickly, have to leave early or I am in too much pain. Some of my friends cut themselves off slowly, saying 'I understand', 'I'll come see you when I'm free' or 'I wish I could come see you but I have other plans'.

They also cancel at the last minute with some vague excuse which, if I was well (like them), might work but it leaves me feeling alone, isolated and, a bit, depressed.

When it comes to POTS there are many symptoms and side effects that don't follow a schedule (I wish they did though). I can't do what everyone else, my age, can do.

I just want to be well and to have (and keep) friends, for once.

There is an upside... When you get diagnosed with ANYTHING you try to find out as much as you can. When I was diagnosed with POTS I did just that. There are a lot of people, in the same situation - feeling the same things I am. I have found many websites, groups and videos from them where you can befriend, chat and feel like you have some sort of a social life. They, actually, understand what you are going through and they help support you.

It is kind of like a support group... Online.

UPDATE(16/4/13)
I don't use them as a support group, I just like to know that there are people out there who can understand. They are there to talk to whenever I need to talk or need advise. I'd like to think that you guys think of me the same way.

*huggle* for everyone

Here are some links for support or information;
http://thedysautonomiaconnection.org/
http://www.youtube.com/user/5awesomepotsies
http://www.youtube.com/user/chronicallykyli
http://www.youtube.com/user/ChronicallyInLove
http://www.youtube.com/user/TeenPotsyProductions
http://www.youtube.com/user/UKpotsies
http://www.facebook.com/groups/75183049224/
http://www.facebook.com/groups/67434616607/

Too Tired To Tidy

ARGHH...

Having to tidy my room was hard enough before I got ill.

Now it's, almost, impossible.

I, not only have POTS, have back problems, an ankle problem, asthma and allergies. Mixing these with tiding my room. That is a recipe for disaster.

After 2 minutes of tiding I get light headed (or as I call it, Floopy), after 5 minutes of being crouched over I'm in agony and after 7 minutes trying to put things away on a high shelf I fall over from floopy-ness, back pain and my foot giving way.

Why does my body gang up on me?

I vote for a 'Body Part Exchange Program' or as it will now be known... BPEP - Which is a nice thing to think about for two reasons;

1- We'd swap the parts of our bodies that hurt for ones that don't
2- It's telling you to 'BPEP', in other words; Be Peppy

:)

Oh, the wonders of my mind and the rubbish it comes up with.

P.S. Maybe a tidying up robot is closer on the horizon. (I must look into that.)


*huggle* for everyone

POTS isn't all bad

Having POTS, DEFINITELY, has it's down sides I guess having POTS (or any illness) you have to find the silver lining, the bright side.

If I didn't have POTS (sounds like I'm going to burst into song - but I am... You just won't hear it - only I can) :

• I wouldn't have left/been kicked out of a school I hated surrounded by people who bullied me and people I didn't get along with 
• I wouldn't be doing a course I love
• I wouldn't have, finally, made friends in my class
• I wouldn't have found out who my "friends" really were
• I wouldn't be starting University mid-September

Plus you don't have to dwell on the fact that you're ill... If you do then you'll always feel horrible because you're illness will be controlling you. You need to fit your illness around your life, not the other way around.

I know what you're thinking... 'Easier said than done', understandable really. I don't even take my own advice all the time, but that is on the bad days. For some the bad days are closer together with a good day every so often unlike the opposite (which would be preferable). I have been in both of these situations.

When you're having a bad day, look ahead... plan what you want to do when (NOT IF) you get better. That way you can feel better about how good life will be when the bad days are few and far between.

I still get my bad days... sometimes it's days and sometimes it's months but, hopefully, I WILL, finally, take my own advice.

*huggle* for everyone!

I.D

POTS is an invisible disease (I.D.)

IDs aren't very well known and, as the name says, they are invisible. There are many different IDs, POTS is only one. Some others are; Fibromyalgia, Lyme Disease, Post Traumatic Stress Disorder, Crohns Disease, Autism, Lupus, Depression, Migraines, Arthritis, Asthma, etc... The list goes on and on.

From the outside we look normal (although I must admit, I am anything but normal) we have symptoms that aren't noticeable, not to say that they aren't real and a right pain.

POTS symptoms; (information gathered from wikipedia and http://www.dinet.org/symptoms.htm)

• Lightheadedness
• Easily over stimulated
• Fainting or near fainting (syncope)
• Palpitations
• Generalized weakness
• Tremulousness
• Shortness of breath
• Dyspnea (difficulty breathing)
• Chest discomfort and/or pain
• Loss of sweating
• Excessive sweating
• Loss of sweating and Excessive sweating are more common in patients with elevated norepinephrine levels
• Delayed gastris emptying some patients report gastrointestinal complaints, including bloating
• Bloating after meals
• Nausea
• Vomiting
• Abdominal pain
• Diarrhea (sometimes with alternating constipation)
• Constipation
• Bladder dysfunction (this may include Polyuria [excessive urination])
• Pupillary dysfunction (Pupillary dysfunction may or may not be responsible for some other reported symptoms, such as: Blurred vision and Tunnel vision
• Fatigue (which can be disabling)
• Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)
• Headache/migraine
• Myofascial pain
• Neuropathic pain
• Dizziness
• Tachycardia
• Exercise intolerance
• Clamminess
• Anxiety
• Flushing
• Postprandial hypotension (low blood pressure after meals)
• Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in colour)
• Intolerance to heat
• Overheating (flushing)
• Feeling cold all over (chills)
• Low blood pressure upon standing (some physicians feel orthostatic hypotension is a separate entity from POTS)
• Cognitive impairment (may include difficulties with concentration, brain fog, disorientation, memory and/or word recall)
• Narrowing of upright pulse pressure
• Depression
• Cold extremities (hands, feet and often nose)
• Hypovolemia (low blood volume)
• High blood pressure
• Hyperventilation
• Numbness or tingling sensations
• Reduced pulse pressure upon standing
• Low back pain
• Aching neck and shoulders
• Noise sensitivity
• Light sensitivity
• Disequalibrium
• Arrhythmias (irregular heart beats)
• Chemical sensitivities (may have multiple chemical sensitivities and can be very sensitive to medications - may only need small doses)
• Feeling full quickly
• Feeling wired
• Food allergies/sensitivities (some foods seem to make symptoms worse)
• Hyperreflexia
• Irregular menstrual cycles
• Loss of appetite
• Loss of sex drive
• Muscle aches and/or joint pains
• Muscle weakness
• Swollen nodules/lymph nodes
• Polydipsia (excessive thirst)
• Weight loss or gain
• Feeling detached from surroundings
• Restless leg syndrome
• Tinnitus
• Feelings of fear
• Feelings of nervousness
• Burnout

POTS can be misdiagnosed very easily.

POTS is a vicious cycle because we are told to move around more but the more we move around the more we find it hard to and the more we want to lie down.

Conditions that can be associated with POTS;

• Vasovagal syncope AKA neurally mediated hypotension (NMH) or neurocardiogenic syncope (NCS). This is where the blood pressure drops and the blood starts pooling so fainting occurs.
• Chronic fatigue syndrome
• Fibromyalgia
• Irritable bowel syndrome (IBS)
• Ehlers-Danlos syndrome
• Hypermobility; really bendy and flexible
• Restless leg syndrome
• In rare, paediatric, cases - moderate to severe memory loss

Having POTS doesn't necessarily mean that you would have all the symptoms; you could have a mix and match situation like a lot of POTS people... Like me.

I want people to understand that just because you can't see it doesn't mean it's not there.

IT IS THERE.

*huggle* for everyone

College (Sixth Form) Will Start Again This Week

I have conflicting emotions when it comes to returning to college.

I excited for once (not used to being excited for the school year to start up again), I am hesitant and nervous, I'm afraid (health wise - they might kick me out if I miss anymore) and I'm worried about the fact that I'm ill.

Here comes the conflicting part;

I think/know that people will treat me differently if they know I have POTS (even though my friends at college see me in an electric wheelchair that the college lends me and my crutches), that the college will find out I have it and then find out what IT is.

I also, kind of, want people to know I have it, which sounds weird but it might take some pressure off of me, help me and even give me a little leigh way when it comes to work and outings (not that I'd milk it but POTS can be very difficult and you can't schedule when I will have a bad spell.)

What should I do? Tell or not tell?

*huggle* for everyone

My life thus far

I am 18, but my life tells a different story.

I have always had health problems... not too bad but health problems never-the-less. In and out of the doctor's surgery and hospitals. It didn't seem much of anything when I was younger, but over the last 5 years or so, lets just say, it hasn't been overly friendly.

Doctors have told me all different things; the worst ones are: "It's all in your head" and "I think this could be more psychological than physical."

I have lost friends a long the way, which makes me sad especially because I think of how we used to hang out, of how they used to be than who they ended up.

Recently, the doctors have finally agreed that I have a REAL, MEDICAL problem (and it might sound weird but I was relieved when they said that; it was just a relief for someone [other than me or my mum] to know that I wasn't faking and it wasn't in my head.)

I am finding it difficult though.

Ever heard of POTS?

Neither had I.

It stands for Postural Orthostatic Tachycardia Syndrome. It's where my body can't adjust nicely to standing up or moving about. My heart starts palpitating in order to make up for the low blood pressure POTS causes.

This means that I can't stand up or walk around for very long and a whole lot of other cheerful things. It also comes with a 'POT' load of "fun" symptoms. (GET IT?! - I have to admit, it wasn't my best joke.)

Along with POTS I have a few other health problems... This is why I can't keep friends. They get fed up that I can't go out with them and have to cancel on them. I try to make up for it but no such luck. Now, on top of all of that I now use a wheelchair when I'm out and about... It's not even an easy to use wheelchair; I have only been out with my mum and sister since I got diagnosed with POTS and that was a laugh and a half. Not only do I struggle using it but my mum has to jump on the back of it in order to make it tip so it can go up 1 step...

How am I supposed to be a normal teenager?

How can I go out with my friends in an inoperable wheelchair?

This wheelchair was given to me to HELP me be more normal, but how can it if I would have to ask my friends to 'help push me', 'wait up you're going too fast' or 'can you just help me to get over this step'?

_______________

I can't believe that all of this is because of a measly bottle of water I tripped over when I was 10... That's, pretty much, where the hospital visits became more frequent.

Tearing the ligaments in my ankle; not once, not twice but three times and then the evil doctors decided I needed surgery (which went wrong and they didn't want to admit it.) Then I got, more than one, back problems. Which is when I started fainting.... Yet another cheery symptom of POTS.

My medical file is bigger than a kid who gets suspended at least once a month for 5 years.

This is just a bit about me.

*huggle* for everyone