Nice Day For Nasty

Today has been quite mellow. I got dressed and stayed in bed until my mum came home. We had lunch and then left to do some errands.

My mum is trying to instigate this new plan of hers that we do some jobs and then go out. She doesn't want me to be stuck at home all day everyday for the whole of summer.

My mum bought me a mini fridge to sit in my room for when nobody's in and I find it hard to move I'll have food and drinks refridgerated.

Our next job was to take things back to hobbycraft and next which went swimmingly. We went to have a nice cool drink in Costa (my favourite drink at the moment is the Tropical Fruit - I don't drink alcohol for a few reasons [going off topic] my sister says its like a virgin piña colada).

Anyway, I was feeling most summery... It REALLY warm out an I'm wearing my most summery outfit I have worn (since my mum dressed me when I was little) and I was even wearing summery makeup that matches my clothes but I felt I needed summery lipstick-something-or-other so we went to boots.

My mum magically found a lovely lipthingy but we were still looking at our options. We turned into the next aisle (mummy was pushing me in my wheelchair) and there was a woman helping a lady with the makeup so my mum started making beeping sounds to let them know someone was behind them and yet the lady stepped back (almost fell on me) my mum apologises but the lady decided to say something "What's the good of you beeping all that when I was clearly standing in front of you liking you just stop; You ran over my shit". My mum continued to apologise but the woman kept on so I spoke up "You should be looking where you're going I actually disabled and you could've really hurt me" I could tell that she wanted to continue but I think I shocked her, it really shut her up. I mean my mum couldn't see in front properly because there was my wheelchair AND my immobilised leg sticking out.

She Should have been watching where she was going because it's true anyone who is in a wheelchair can make sounds to let people know that they're behind them but unless people look where they are going it could have really hurt me or anyone else who was in that chair and she wasn't even sorry, she wouldn't let off my mum and I thought that was really out of order of her. 

It upset both me and my mum and I don't think we did anything wrong. I didn't want to be rude but she was trying to be rude even though it was her fault.

What would you have done?

*huggles* for everyone!!!

Sweet Spoons

I dodn't know if any of you have heard of 'The Spoon Theory'.

I've started getting more involved with my POTS and Dysautonomia groups on Facebook and talking to the potsies on Instagram. The instagram people refer to themselves as spoonies and I had no idea why. I asked one of why they were 'spoonies' and they replied "have you heard of 'The Spoon Theory'?". I asked them what 'The Spoon Theory' was and when they didn't reply I looked it up.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

It's about a woman explaining her condition to her friend in a way that they can understand without actually having any conditions, illnesses or disabilities. She explains that she gets a certain amount of spoons each day and she has to plan her day carefully because each activity she does costs her a spoon whereas everyone else doesn't even think about what they doing. It could cost a spoon to just make breakfast.

I found 'The Spoon Theory' incredibly easy to understand (it even helped me to understand myself a bit more). I've decided that I will send it to my friends and family to understand it better. My friends and family know about my conditions, illnesses and disabilities but it's one thing knowing what they are and another to understand what they do to me.

I sent it to one of my closest friends at Uni and I was surprised and moved that he read it (I wasn't moved because he read it, I was moved by what he did next) he said to me that he wishes he could give me all of his spoons. Isn't that sweet?! Before you go there... I don't fancy him, he is one of my closest friends (plus he's gay).

I also gave it to my mum to read and it made her cry. She already knows what it is like because she has some conditions so she gets given spoons too.

It's a lovely story. I urge you to read it if you haven't.

*huggles* for everyone!!!

Potsy With(out) Patches

Last night I was in a lot of pain so I had to take some pain killers again. Not long, like a couple minutes, after I started to feel more nauseous than normal; I grabbed my pink bucket (which got a lot of hugs last night and over the last few days) and I had my head hanging in it until I fell asleep. At one point I thought I wasn't feeling too bad so I asked my mum for some apple pieces. Weirdly, when II was eating it I didn't feel so sick but directly after each piece I ended up with sick in my mouth causing me to hug my bucket. I decided that I was getting a headache so I would rub '4head' on my head to help reduce my migraine and then I put my eye mask on for the headache and lay down on my mums bed (I also put a pillow over my eyes - just something I do). My mum was talking to me and then we stopped. I don't know how long after it was but mummy started talking to me again; I wasn't very happy with what happened next... I was disorientated; I didn't have any idea where I was, I only knew that my mum started talking to me. This is still making me worried and sad today. :(

This morning I woke up in utter pain again; I couldn't move, it was that painful. My mum told me "take  the patch off, it's obviously not helping and it's making you miserable" and straight away... it was off. So, now I'm back on my old regime of medications.

I have a Doctors appointment next week so I will discuss it with her then.

No idea what I'll be told to go on next but I know one thing... I will read the side effects!! (best part)

*huggles* for everyone!!!!

UPDATE: Potsy with Patches

So, I've had this patch on for over a day now. It kind of works...

...but, I woke up in sooooooooo much pain. It's like when you haven't taken your pills at the right times or you sleep through the alarms you set to wake you up to take your pills and it hurts to move, breath, even think about doing anything.

The doctor said I could take a codomol (can't remember if it was co-dy or co-co so I've been taking co-dy [not that I understand the difference between the two]).

That wasn't the last time today I had to top up... everything is a lot more achey and some things (obviously I can't do all the things everyone else does but I find ways to do my own things) I can normally do on all my pills just cause a knock-on effect that takes about 3 seconds that makes me scream out in pain asking for something to help. Plus, when I was hopping to lounge I forgot to readjust my leg/knee immobiliser (because if I don't do it before I hop it starts to slide/fall down) and it fell/slid and pulled down on my knee and it hurt SOOOOO much! ever since then my leg has been killing me which just made cleaning me even worse and THAT is normally a laugh and a half... Imagine me sitting on the lid of the loo with my leg up in the air leaning on the edge of the sink and my head leaning on the edge of the bath... and that's JUST for washing my hair. For my body, I sit on the edge of the bath in my bra and knickers whilst gripping hard on one of the grab rails with one leg down hard on the bottom of the bath and my bad leg hovering outside on the other side of the bath and then my mum helps clean me and then she closes her eyes whilst I clean my lady bits.

Now, I'm about to take Tramadol after two sets of co-dy and then going to 'hopefully' sleep.

Not looking good for this patch thing!

:/

*huggles* for everyone!!

Oh, if any of you are having a hard time getting your friends and family to understand everything going on with you then you should read and send on the spoon theory

Potsy with Patches

So, the last time I saw, Dr C, my main consultant (we try to get all the other consultants to CC her in to all the letters they write [there are/have been A LOT over the years]) she looked at my list of painkillers and decided that, although I need to be on all those pain killers to help with all my pain, being on all these pain killers are damaging my liver and I'm building up a tolerance to them so they need to be 'upped' from time to time.

Dr C prescribed a solution to this; A pain killer patch that releases the pain killer evenly. I wear one patch each week. It's called BuTrans 10microgram per hour, a Transdermal Buprenorphine Patch. It has to be changed on the same day each week.

Today I put the first one on and, of course, I HAD to read the side effects (as I do for EVERY new medication I get) and there are some good ones;They are written under subtitle's: Very Common, Common, Uncommon, Rare and Very Rare.The best ones are under, as you might be able to guess, are under Uncommon, Rare and Very Rare causing mood swings, feeling detached from oneself, difficulty speaking, a feeling of extreme happiness [this one I kind of want], hallucinations, worsening of breathing problems (such as asthma, weight loss [I kind of want this one, a bit, too], swelling of face, spasms [like the word spasm], an increase in accidental injuries, withdrawal symptoms, mental disorder, diverticulitis (inflammation of the intestine), decreased erection, sexual dysfunction,muscle twitching and blisters.

These are just some of the more interesting ones; a lot of the side effects coincide with the symptoms of POTS and all my other problems so I probably won't notice if I have those side effects.

Have any of you tried these patches before??

If you have, did you get any of the side effects??

Caring Commenter

First comment on my blog...ever. I have had 334 views on my blog since it started September 9th 2011 all over the world and yet this is my first comment. It was also very thoughtful so I wanted to let you guys know that people out there do care! and I wanted to let that person know how much it meant to me.

Freakin' Floopin' Fear

Yesterday I had a horrible potsy floopyness come over me. One second I was playing with my niece and my mummy and the next second I can't think straight, can't really look at anything because I was completely out-of-it, barely hold a thought for a minute, and my whole body was heavy. At some point, I don't remember when, I laid down and my mum took my niece in the other room to change her nappy, my body was shaking and twitching all over, it didn't feel right and I couldn't stop it. I closed my eyes (may have passed out because I could still hear everything - or just dozed off, but the latter seems most likely) and suddenly my mum was standing over to check that I was okay... It must have been a while later because my niece was dressed, so was my sister, and they were leaving.

That was the worst floopiness/potsyness/fainting that I have ever experienced. I have been very floopy before and I have fainted but never anything like that and never THAT bad and THAT scary.

Not sure if that's a 'normal' thing for potsy people :S YOU tell me?!

*huggles* for everyone!!!

Clearly clinical

Yesterday I had my appointment at the fracture clinic to find out what was wrong with my leg.

It was a 9.15 appointment at the hospital. It's not the best hospital I've ever been to (as you all know).

I got called in and the doctor barely looked at me, he didn't have my notes so he asked me what I'd done and why I was in a chair (again - I had to explain it multiple times at A&E) then he told me to get on the bed.

He walked out as I proceeded to get up on it. A guy walked in with bandage scissors and cut the Robert Jones bandages whilst hardly talking and being a bit of a grumpus. As soon as he finished he walked out leaving me and my mum alone in the room. We discussed what 'freebies' were in the room but we couldn't find any in sight. I changed the topic of conversation to my leg and foot. My leg looked substantially thinner compared to my 'good' leg. In 2 and a half weeks my leg managed to lose  a considerable amount of muscle wastage. I think that this happened so quickly because of my leg history - with it getting injured so often and I have ha a lot of muscle wastage in my 'bad' leg previously.

The doctor FINALLY came back in; he looked at my leg, he checked to see if the knee cap popped but he ruled that out and then he examined my leg thoroughly. The pain was very intense! He came to the conclusion that I may have damaged the cartilage or tore the ligament. He left the room once more and the grumpus returned with a leg splint (can't remember the name of it - it's tri something).

I have to have an MRI but it won't be for a few weeks and then I have to have another appointment with the fracture clinic doctor again.

In the mean time, I had an OT appointment earlier this week and my OT wanted me to make a follow up with her after we found out what was wrong with my leg. 

My OT is very kind to me. She is going to  contact my social worker to talk about getting Carers at home because at weekends my mummy is helping my sister with my niece and I can't go with because the toilet is upstairs but also it will be just me and my mum at home and I need more care than she is able to help me with. She's also going to talk about my rubbish Carers at Uni. My OT is also helping with my wheelchair debacle, my wheelchair keeps sliding into the road, falling on me and just overall not helping me and when we brought it home the maintenance guy decided there were too many things wrong with it so he had to take it away. my grandparents tried to talk to the wheelchair service about getting me a new and different one but the service said I should buy my own - my grandparents made the situation worse, so my OT said she'd try to help out. My OT also said she write to my Uni about helping me out more because I keep overdoing it and ignoring what my body is telling me because I want to prove to everyone and myself that I can do it all just like they can but I'm not like everyone else. I need to rest, look after myself and pace myself.

My mum called my OT after we went to the fracture clinic and she said I should wait until we have the results of my MRI before making an appointment for OT and physio.

Arghhh...

Oh well.

I hope everyone else is doing well.

*huggles* for everyone!!

Accumulating Conditions

I actually just realised that I haven't put all my conditions on here. Although if I had done I would be adding to it more than 'from time to time'.

My body seems to not be satisfied with the conditions I have it seems to want me to get a record in the Guinness Book Of World Records. My Doctors are also finding new conditions for me. I don't really help matters; I have some symptoms that don't match any of the problems I've already got so I go in search for answers to what they might be.

For University I found it useful to write out all my conditions, allergies and medications for the Uni, for my carers and for me.

So far:

 Medical Conditions:

POTS (Postural Orthostatic Tachycardia Syndrome)

EDS (Ehlers Danlos Syndrome)

Hypermobility

Hypermobility of the bowel

Four prolapsed discs

Scheuermans disease

Degenerative disc disease

Left Ankle instability - surgery gone wrong

Migrainous vertigo

Hearing loss – I have hearing aids

Tinnitus

Anemic

Asthma

CPRS (Chronic Regional Pain Syndrome)

Vitamin D deficient

Allergies:

Ibuprofen

Carrots

Black pepper

Cinnamon

Nutmeg

Smoked salmon

Popcorn

Orange squash

Baked Beans

Caffeine

Dairy

Allergic to some plasters, perfumes, creams and washing powders

Medication:

Amitriptyline – 100mg – evening only

Paracetamol – 2 tablets when needed up to 4 times a day

Midodrine – 5mg x 3 times a day

Pregabalin – 150mg x 2 times a day

Domperidone - 1 tablet up to 4 times a day

Erythrocin – 1 tablet x 2 times day

Codeine – 15mg x 2 when needed up to 4 times day

Cocodomol – 10/500 x 2 when needed up to 4 times a day

Codydromol – 10/500 x 2 when needed up to 4 times a day

Erythrocine – morning and evening

Pro bio 7 – evening only

Seritide inhaler – 2 times a day but increase to up to 4 times a day if unwell

Tramadol - 50mg 1 or 2 tablets as and when needed

Just in case you are worried about these medications, I DO NOT take them all at the same time. Also, the allergies written in red are the most important and I have the worst reaction to them.

People with Hypermobility are more likely to have certain other conditions such as EDS, POTS, etc... although there is no real reason for this (as far as I am aware).

All of these conditions are what is difficult. I have only been diagnosed with most of these in recent years and I am still trying to understand them, how they work, what my reactions are, what the symptoms are, how I can cope with all of them at university, how each one can react with the others and how the medications work and what their side-effects are.


*huggles* for everyone!!!

Hurty Hopping

Yesterday I went shopping with my mum, sister and niece. Me and my mum went to get our nails done (I did mine for my sister's party and I got them redone for comic con). My sister had other erands to do. unfortunately we were a bit slow when we first go there and my mum had to leave at 2. I borrowed an electric wheelchair from shop mobility and they told me it had to be back at 4.

We got to the nail place but we had to wait about half an hout and I said my mum should go first. This was silly because she was having one colour and I was having a design. Needless to say mine took a lot longer to do so when 2 o'clock came around I told my mum that she should go with my sister and then my sister would ome back for me.

My nails were finally done by 3.15-3.30 so I had to get the chair back to shop mobility very soon. I got a text from my mum telling me that my niece wasn't happy so my sister didn't want to go into the car park again; she wanted to wait outside Debenhams.

I HATED THIS PLAN!!!

I had returned the chair which meant I had to hop on my 2 gutter crutches, in my welly (which has a tiny heel and I am not used to ANY heel) to the lift which was a 2 minute walk but took ages to hop. Then I had to stand and wait for the lift. I went to the next floor and I had to hop from one side of Debenhams to the other.

The hopping was hurting my good foot, joulting my bad leg and making me floopy. I had to keep stopping I was about 15 steps away from the door when I had to rest. I called my mum because I was in so much pain and I had no idea how I was going to make it out the shop. I sat at the bottom of the mannequin thingy for ages and I was in tears, struggling to not fall and pass out.

I texted my sister and asked her to stop at home to get my manual wheelchair but sh only read the text when she was outside the shop. I called her and told her it all. my niece was asleep in the car and it turns out that once you get out the doors there is still a little ways to go to get to the road. My sister drove onto the paving (not quite a pavement but not a road) which is not exactly good. She ran in to get me, grabbed my bag, and my arm which helped me to spread my weight a bit so I was able to hop to the car.

When we got home I crashed and I mean CRASHED!!

I slept from 5 until 1 in the morning then from 3 until 11 in the morning. I overdid it and I knew I did when I was doing it. I was in a lot of pain and completely potsy.

Never doing that again.

I wouldn't advise it!

*huggles* for everyone!!!

Over Doing It At A Party

My sister's engagement party was on Sunday at my Uncle's house, my only job towards the party was decorations because I can't really help out any other way (I did WATCH my niece from time to time, but I could ONLY watch her, I couldn't sit on the floor with her or chase after her - back to the point).

Nothing was really going to plan... my sister left later than she planned but I couldn't go with her because I was having trouble getting my contact lenses in without a mirror (not that a mirror would help - I'm not vey skilled or practiced at putting them in) so my sister went to my Uncle's house with her friend to start setting up. My sister's fiancé came to get me and food whilst my mum looked after my niece until my sister came back for her. My mum arranged a makeup artist for all three of us, and the make up artist turned up as they were just starting to set up so my sister had to get her face done because neither me nor my mum was there yet. It took over an hour and a half to do her face because the make up artist was getting set up as she went along (so my sister told me it would've been better if I went with her anyway- everything is better when looked at retrospectively).

When I got there I couldn't get up there step as it was too high so my Uncle helped me by adding another step temporarily.

The party was outside, so I had to get down the step (which is A LOT easier than going up it), in the new marque we bought.

Their bathrooms are both upstairs so I went hours without using the toilet (not the best plan but there's no way I can do the stairs before let alone now with my leg like this).

The party was really nice and funny at times; it didn't rain but it was windy, so windy that the marque tried to blow away multiple times but everyone found it fun. We all held on to it to stop it from blowing away. We also didn't have enough time to set up so my sisters friends made it a game when we had to assemble out plastic martini cups.

My grandparents weren't involved in any planning for this party; they kept offering to pay for things but if they did then they would feel like they had a say in it. They asked if they could invite friends and when my sister said no they said 'we let them have up to 10 friends to their Bat Mitzvahs'. ARGHHH. It was OUR Bat Mitzvahs; everyone else we know had discos with ALL their friends and classmates there but we had to have a sit down lunch with all THEIR OLD PEOPLE FRIENDS!!!

Anyway, I'm going off subject. We bought the marque and mummy wanted to keep it for parties but, as their way of having a say, they promised it to my uncle (to which they had no right).

Throughout the whole party my Grandma kept making comments, picking at every detail and just generally ruining the party for my sister. Everyone else loved it, found it a laugh but NOT her.

I was given the job of official party photographer a few months ago but that was before my leg. I delegated some of it to one my my sister's fiancé's cousins. My sister wanted photos of all the food before anyone started eating which is when I delegated. The rest of the party I managed to fulfil my duties; I got photos of everyone that went and I was even able to get a candid photo of my sister and her fiancé kissing. I also took a couple photos of her getting her make up done (like people do for weddings).

Throughout the whole party I had to hold my leg out - making sure no one hit it at the same time. I, also, was given my lovely little niece a few times throughout the party. Once she was being a bit wiggley because she didn't want to be seated so I made an announcement selling her to the first bidder (I didn't put it that way but I should've). Nearing the end of the party I was given a stool to put my leg up on. AT THE END!!! Silly!!!

Later on my mum wanted to go inside with my niece and she asked me and my aunty to join her; this is where I was embarrassed, distressed and uncomfortable. I had to ascend the evil step; I tried to do it myself but I was struggling so two of the guests helped me (which was extremely kind of them) one person stood inside to help pull me up and the other lifted me up. I ended hitting my foot on the step and my knee bent... I was in a lot of pain but luckily the party was almost over so I didn't have to put a brave face on for long (not that I managed to do it at all).

When I got home I crashed. I was so tired which tends to happen when I over do it and go all potsy.

It was a lovely party though :).

*huggles* for everyone!!!