Thursday, 29 July 2010

Camp Quest UK!

Hiii guys :)

I am well excited!! I thought about going on Camp America this year, and Mike Morgan said NOOOOOO! they are bible bashers! look at this camp. It was then that Mr Morgan introduced me to Camp Quest.

http://www.camp-quest.org.uk/

Camp Quest is an alternative to Christian camps. It teaches kids critical thinking. So anyway, i messaged Camp Quest offering my services, but unfortunately they were full of volunteers and didn't need anyone else. So anyway, i haven't really thought much about them until i get an email from the co-director of Camp Quest UK asking if i was still interested in helping out. I was like YEEEEEAH! well... cut a long story short.... I am now planning and setting up my very own Camp Quest here up North! How very terrifying is THAT! lol

So basically, there are already 3 CQ's, but they are all down south, and they have had quite a few requests for one up North. Stupidly they have come to me! :D

So i have spent today ringing around camp sites trying to find a place that may be willing to have us. I've found one place, i am just totting up prices now. So yeah! i am really really excited! If i manage this it will be AAAAWESOME! Hopefully i have a few friends interested, Hanna and hopefully Mike Morgan (anything is possible with Mr Morgan on your team!!) My sister is very clued up on camping and outdoor activities, so i have roped her into it. If there are anyone reading this that thinks you may be interested, check out the website, and contact me somehow! I am sure i will need more volunteers down the line!

I am really glad something like this has come up. As i said in my last blog i have started to get really down at the moment and my relationships with people are deteriorating. So this gives me something to take my mind off everything and really focus on something. This has actually given me something that makes my life feel less pointless and that has made me really happy :)

As for outdoor activities :/ i may have to stand and shout encouragements! lol


So yeah! check out the CQ website, and watch this space for a CQ coming to a campsite near you! (only if you live in the North of England though!) lol

Sunday, 25 July 2010

Long time no blog!

Heeey, It's been over a month since i last posted!! :O shocking, i am ashamed of myself lol

I was so busy with all my retake exams and stuff i just didn't get chance, and the after them i have just been soooo very tired after work i haven't had the energy to write a blog.

But i'm back now! it's school holidaaays! That has got to be the most awesome thing eeeever about working in a school :)

So lets start bloggy blogging the last month!

Firstly!!! You may now call me Samantha Jane Brook BSc!! :D Ok i only got a third class degree, but tbh, considering how much i have struggled this year i am happy and surprised i actually passed! I am so relieved i have finished!! it's ooover, the torture that is a biology degree is ooooooooooover! *Victory Dance*

Secondly i have an iPhone 4! sooooo preeeetty!! but i won't go on about them, you all know what they do, if you don't then where on earth are you living?

So thirdly? Thirdly... is that right? well whatever... Thirdly, how have my joints been? Honestly they have been S**t... I am really starting to struggle with walking :( I can walk on my own, pretty well for about 10mins, then i am in so much discomfort, i start limping cos one or both of my hips are extremely painful, my sacroiliacs (where your spine meets your pelvis) start throbbing and my knee's give in. Luckily most of the time i am walking i am with my Best Friend Nick, and he is like my personal zimmer frame :)
I am struggling with siting down too, keep getting cramp in my hips, and shooting pains down my legs. I can barely sit through a whole film at the cinema (i spend most of my time at the cinema). Most of the time i have to get up and go for a walk, I tell Nick i need to pee, cos if i told him how much pain i am in he'd be making me leave. If i manage to sit through the film then when i stand up at the end everything is so stiff that i can't walk properly :( And i have noticed that wearing Skinny jeans makes this worse.

As for work, i coped... just. I have to go to the gym at the weekends, otherwise i will put weight on, and everything will get worse, but going to the gym at the weekend doesn't allow my joints and muscles to repair over the weekend, so come Monday i am still hurting, so i start the week in pain, and whilst working the pain will only get worse... So by Friday i am struggling to work. But i put on a brave face and push through it. They sort of know whats wrong with me at work, and the other technician is supportive, he doesn't let me do anything that is likely to hurt me. But the one thing i can not deal with concerning this condition is being told i cannot do things that a normal 21 year old should be able to do. :(

Fourthly? Depression. Nick told me the other day that he thinks i am depressed. Apparently the depressed one usually can't tell that they are depressed, and it's always the ones close by that notice the changes. I didn't think i was depressed, and still don't to a certain extent. But the things he said have made me think. He said i never seem to be happy anymore, and that i never go out. Which is true, i don't go out, because all my friends just go night clubbing, which i can't do, if they aren't night clubbing then they round some one's house drinking, which i can't do. Being the only sober person in a house full of extremely drunk people is not my idea of a fun night out. I physically can't do anything else, i am so tired all the time that i just want to go home and go to bed, and he doesn't seem to understand that, he expects me to be social and spend time with him. It does get me down that i can't go out, i can't spend time with my friends, and i can't just be a normal 21 year old. But depression? I don't know the difference really....

Anyway, I'll leave it there for now, I am on summer hols for 5weeks now, so i will try to blog more often!

Thanks for reading.

Sam xx

Monday, 21 June 2010

Mr 'Shoulder expert'

Today has been a rather CRAP day.

I have been waiting for an appointment with orthopaedics for months, and i eventually got one for today. So i got to the hospital at 9am ready for my appointment at 9.05. I got seen at 9.30. So, i explained to the so called 'shoulder expert' that i was experience pain like i have not experienced before. The pain in my shoulder gets almost unbearable, so unbearable i just curl up and cry, so unbearable it's impossible to move my arm.

So Mr 'shoulder expert' wiggled my arm a bit, whilst i constantly said "ow, ow, ow, that really hurts" all he said was "just a little bit more". NO MR SHOULDER EXPERT! No more its bleeding hurts!! so after making my shoulder pain much worse than it was already he sat me down and explained to be that they can't operate, because 99% of operations fail and i'll be straight back within the year with probably more problems. Ok, fair enough, i understand that. i asked what was causing the pain, and he couldn't give me any answers, it might be this, it might be that, who know... Well i would sure as hell like to know, and as a 'shoulder expert' i am pretty sure it's his job to find out what is wrong. But no, Mr 'shoulder expert told me and i quote "just deal with it, carry on taking your pain killers and we'll get you to a physio".

Firstly i have seen a bloody shoulder physio, i know what exercises i need to do, i just can't bloody do them with my left arm because i can't lift it above my head. Secondly, he wants me to attend Halifax Hospital once a week for 12 - 24 weeks! wtf, i work full time, in Bradford, i can't be taking a morning off every week for 12 weeks! So i said it would be a lot easier for me if i went to St Luke's hospital because i work right next to it, so i can make appointment that fit in with my dinner and just wander over and then back to work. But no, he wants me to see his 'shoulder expert' physio friend in Halifax.Well tuff, cos i can't do that.

So all in all, it took him 2minutes to damage my arm, and tell me to deal with it and go away. he made no attempt to diagnose my pain, however much i stressed how painful it was, and he even questioned the fact i even had hypermobility. I left feeling like a fraud, he made me question whether i actually was a hypochondriac and it was all in my head. He seemed to talk to me like he didn't believe me. So now i am stuck in a sling because he pushed it around too much making my neck and shoulder extremely sore and i have a referral to a yet another physio that will tell be to the exact same exercises that i do every day anyway but find really hard because of a pain he doesn't believe is there.

I was so upset when i came out of there, i nearly cried, luckily Nick was there, and i don't like crying in company so i didn't lol. I am just so frustrated, if it's not my shoulder it's some other joint, and i go to the doctors, i tell them how much pain i am, how much i am struggling to do normal things a 21 year old should be able to do. All the doctor does is tries to give me painkillers, i say i am allergic to them, so they tell me i just have to deal with it. Then they refer me to some apparent specialist, who tell me there is nothing they can do, and refers me to a physio, who gives me the exact same exercises the last physio gave me.

I'm being passed around doctors like a bag of sweets no one likes... like when a box of miniature hero's with only the picnics left... they look at it, turn their nose up and passes along.

Then after my fun morning at the hospital, i went to work. One possitive to having an arm in a sling is that no one would let me do any work, there was always someone there refusing to let me carry anything. Someone even offered to tie my shoe lace for me. So work today was pretty un eventful, i just sat there watching someone carry my stuff around for me. Andrew let me roll some steel wool into walnut sized balls, and then i got a little pyro-happy and started setting fire to steel wool :) tis very fun!

then on the bus home! grrr, here's another rant on it's own! i waited 35mins for a bus that apparently comes every 10mins. When i got on it, it was packed, so i had to stand up. Now usually i don't mind standing up. But the bus was driving by someone who thought he was a rally driver, i have one arm in a sling and i'm trying to hold a heavy bag and hold on my for my life with the other. I couldn't put my bag down cos there was so many people stood up there was nowhere to put it, and some twat kept knocking into my bad shoulder. Some women looked like she was going to kill me cos i knocked her with my bag whilst nearly falling flat on my face cos the bus driver decided to practise emergency breaking. It was clear i was really struggling, and i've hurt my other shoulder now from being jerked around a bus. The one and only person who offered to let me sit down was a 70year old Asian man with one foot in a cast and on crutched! well of course i wasn't taking his seat! so i said no i am fine. Then the person sat in front of him got up and left, and a mid 20's sort of guy was stood facing me the whole time, watching me struggle, went to sit on the empty seat. The asian guy bless him, stuck his arm out so the guy couldn't sit down, and said "No, let the young lady sit down!". AAAW! i've had such a rubbish day that even that nearly made me cry! There is no way i would sit there and watch struggle like i was struggling today! I hate the human species, 90% of people out there are self obsessed, arrogant and have absolutely no empathy for other human beings.

Thankfully Daddy picked me up from the village, so i didn't have to walk that mile home from the bus, and my tea was ready for me too.

It's my little sisters 19th Birthday tomorrow, but she isn't going to be here, so i decorated the cake my mum had made. It was as good as i could get to a giant cupcake! lol when i figure out how to load pictures on here i'll load one up! Then we pretended we needed her downstairs and lit the candles :) she seemed happy! Then i ate a bit and now feel really sick, it was filled with chocolate, covered in buttercream and piled high with all sorts of sweets! blaaaah. I also got her a Birthday card from my hamster, because i don't do cards, but i found one with a spitting image of my hamster peach on, so i got it :) i might even try get peach to sign it :) i have ink around here somewhere lol!

Sorry this has been a long rant about my suckish day. I am really angry about how these doctors are treating me. I've seen so many specialists, and everyone leaves me with more questions then i started with and the feeling that no one is going to do a thing for me. Every time i see a doctor, it just reminds me that i am 21, i shouldn't get pain like i do, but there doesn't seem to be a doctor out there willing to help me. It's a massive reality check, i've been smacked in the face with this condition and the best advice all the specialist can give me is to just deal with it. Obviously non of them has ever felt pain like this before, i am damn sure they would change their attitudes towards us hypermobile folk if they had.

:( I should really go to sleep now, my hips and back are starting to hurt because i am sat down, and typing with one hand is taking me a very very long time! lol

G'night all xxx

Saturday, 19 June 2010

Weeekend!

I am so stiff this morning!! The muscles in my neck refuse to move! and my shoulder has decided to play hell again, just in time for my osteopath appointment on Monday. I have been waiting absolutely ages for this appointment that my left arm started to get better. But obviously that wasn't going to last was it lol.

Today today today! I had a facial! wooooow, my face feels so soft! i am loving it. It's going to bring up loadsa spots thought, i can feel them creeping to the surface already! Whilst i was having a the facial i was talking to the girl who did it, and mentioned that i wanted to go into Museum education. She said "ooh i might be able to help you there". Apparently, whilst she was training to do what she does now, she worked full time in the national media museum in Bradford, which is in the same group as the natural history and the science museums in London. She worked as a HR person and is still friends with all the people who are involved in the recruitment process :D she is going to speak to her buddies on Monday and find out some information for me, just things like what qualifications i'd need and such. How awesome is she!!! :)

I went to Morrisons after my facial, and some bleeding kid, swinging around a basket, swung it straight in to my knee :( so my broken knee is probably going to be the topic of conversation in an upcoming post! I also put my insoles in the wrong feet this morning! hehe, so i had the raised bit on the outside of my foot and not under the arch. Stupid me, but i couldn't be arsed changing it, and not in the middle of Morrisons either.

It's bloody freezing today, so my hands and knuckles are refusing to move, which is making this typing business quite hard, i am going to have to put my wrist straps on :( i hate those things, but at least the keep my hands warm.

I am listening the The Pretty Reckless! i am loving these right now :D

I am gunna have to stop typing now and give my poor fingers a rest, and i really should be revising too :(

Thanks guys, Sam.

Friday, 18 June 2010

4 weeks of full time work down, a life time to go!

Now that i have got the intro and history covered, i am going to try and post daily or every two days about my day. It won't all be to do with HMS, it will be partially to do with my job, my social life (or lack of) and my home life.

So toooday! is Friday!! which means tomorrow is SATURDAY!! I am so glad i no longer have to work weekends!! I have been working full time for 4 weeks now (well 3, i worked a week, had a weeks half term and now i have just done 2 weeks).

My mum saw an ad in the paper for a science technician in a high school, i didn't exactly want to be a science tech, but in this day an age a job is a job, and one that isn't minimum wage is even better! So i applied, got an interview and got the job!! because i am that awesome :P The first week was hard and tiring, but i managed it just fine and i really enjoyed it!

now that i have done 2 consecutive weeks, my body is really starting to feel it. The fibromyalgia in my neck and shoulders is playing hell with me! It's really not a happy place between my shoulder blades right now!

I was totally zombied at work today, my body really did not want to get out of bed. But Andrew (acting senior tech) was out for a good few hours today so i found a job i could do sitting down. I fixed and calibrated the whole stock of Newton Metres :D that was very fun!! Then someone asked me what hair looked like under a microscope, so of course i got out a microscope and started pulling out my hair, and then other kind people passing by my desk gave me some of their hair. It was rather fun! But why stop there!!! I found microscope slides with alsorts of goodies on, so i got them out too.
But then my fingers went and ruined all my fun by becoming very sore and stiff... stupid fingers. So i went on to another task... organising boxes of staples into size order :P Then it was time to clear away a class room practical and then home tiiime!

(i know what you are thinking! and yes i do sometimes do a real work! i just did this whole weeks work by Tuesday and have had to find lots of little jobs to fill the hours of 8-4... I have been informed that this term is a slow term, and come September i wont get chance to sit down and express my OCD tendencies on boxes of stables, pens, post it and anything i find that isn't striaght and in colour/size order :P haha)

Nick, my best friend picked me up from work and brought me home, thank god! my hips and back were hurting so bad i don't actually think i'd of managed it home, i'd of found a comfortable patch of grass to curl up in LOL!!

I got home, and i have pretty much sat in my awesome rocking chair since. Revising for my retake exams and trying to avoid moving my neck and shoulders. My lower back feels like it is on fire and i keep getting shooting pain in my thighs.

It's 8.50pm now so i think i am going to peel myself out of this chair, attempt to do some of my exercises to loosen up my shoulders and then go to bed. I am having a facial done tomorrow, which should be fun if i manage to get of bed in the morning. hopefully my shoulders have calmed down after a bit of sleep.

Good night all and thanks for reading :D

A bit of my HMS history.

Hi all!

I thought today i'd tell you about my HMS history, because as the fellow HMS suffers will know it affects everyone differently, at different times in their lives.

I have always known i was flexible, up to about age 10 or so i did karate weekly, and i loved showing off my flexibility... everyone was so jealous of the lack of effort needed to do splits, and being able to kick so very high targets for a small child. On to high school i was as i like to put it myself a bit of a freak show. I PE i used to show off a little with my flexibility, obviously back then not thinking anything of it.

Until i was 16. My knee's went, and i was referred to physio. This was the first i heard i was hypermobile, whilst bending my knees and ankles around he said i was very hypermobile in those joints. But that was it, he diagnosed me with tendinitis and sent me on my way. nothing of HMS was mentioned again by any other doctors and of course i had no idea what that meant, i just knew it meant i was flexible which of course i already knew. My knee's got slightly better, but they are still a bit iffy some times.

When i was 19, i started going to the university gym. after only my second session on the treadmills i started getting back pains. I took paracetamol and they went away, but i daren't go to the gym again after that! Eventually after 3months of constant back pains i went to see my university doctor (Huddersfield). He diagnosed me with inflamation of the Sacroiliacs joints. Whilst seeing a consultant (not for HMS) i mentioned what the uni doctor had said and he seemed confused. Apparently you cannot be diagnosed with sacroilitus without an xray, which i had not had. So anyway i transfered back to my home doctors and just traveled back to see them. By this point the pain was so unbareable i sat in the doctors room and just cried my heart out before i even managed to say hello. The doctor immediatly sent me for an xray and referred me to physio. The Xray showed nothing, so i was sent for an MRI scan. mean while the pain was almost crippling, i missed 50% of my lectures, and the ones i went to i had to leave and go cry in the toilets because the pain sitting for so long was horrible. The xrays came back and the showed my L5-L3 disks were bulging and hitting my spinal cord. This physio referred me to a core stability course to try and strengthen me up.

I went to these classes, but really struggled with some of the exercises, especially ones involving my shoulders, and after i dislocated my left shoulder the physios decided to have a look at me. One of them said she had observed me doing exercises and asked if i had heard of a condition called Hypermobility and gave me a leaflet.

And that is where my journey with HMS started!!

One by one, each of my joints have decided to fail me. My hips and shoulders sublux daily, i have fibromyagia in my neck and shoulders. Inflamed nerves in shoulder due to repeated subluxing, i have lordosis of the spin (a front to back curve), i really struggle to hand write things because my fingers hurt so much, my elbows get stuck at about 120degrees and my feet are completely flat when i stand on them :( there is probably more to add to this list, but that'll do for now lol!

I really don't want to moan on about having this condition, and i don't want people out there to feel sorry for me. All i want is for people to have a general idea of the problems i have, and hopefully as i add to this blog, i will go into more detail about my little niggles and wobbles. :)

I hope i haven't bored you so far!

Thank for reading. Sam

Thursday, 17 June 2010

Introduction

Hi guys, i'll be lucky to get one person reading this, and that person will probably know me.... but i'll still introduce myself.

I am Sam, i am 21 and i have recently started a job as a science technician in a high school. I am a geek, a massive geek... I love sharks, i love all fish, i love jellyfish and David Attenborough is my biggest idol! I watch films, and i read books, and that is about the extent of my social life.

Right! i would like to make it clear that the title of this blog "my invisible life" has no reference to me actually being, or feeling invisible... i am not an emo kid, i do not think the world see's straight though me etc.

I infact have multiple joint, muscle, tendon and ligament conditions that aren't fully understood. Especially by onlookers. So my invisible life is about the problems and struggles i have suffering from Hypermobility Joint Syndrome and it's related conditions.

The aim of this blog is not to make people feel sorry for me, because that is absolutely not what i want, i do not want sympathy, i want people to understand (including myself!) this condition i have. It's hopefully going to be my way of preventing myself from getting really down about this and to help myself come to terms with the limits this condition puts on my life.

I promise to try not make this blog depressing, I just want to document my wobbly joints, sore muscles and cracking ligaments :)

It's bed time now, so i will do my first real blog tomorrow :)

I hope i haven't bored you already!

Thanks! Sam xx