Youtube

I've been meaning to start posting videos of what I get up to playing minecraft for quite some time. I've finally started getting round to it, so hopefully there will be many videos coming out in the future. The two I made this week were tours for the servers I play on, just showing what I've been up to.

The first was for the Fesseract the Besseract server, this is a play on words as it's played using a modpack called Feed the Beast, or FTB, so we took the name of our normal server and changed the initial letters.

The second was a tour of the vanilla, or unmodded, server Tesseract.

Neither contain much content, but I wanted to get them out to start learning to make videos and get confident with speaking to the microphone. It's odd that i'm totally content skyping, but talking when there's noone to respond but knowing people will be watching once it's uploaded adds a pressure to it.
I'm working on making some transition screens so that as I move around during videos, or if there's an issue so it has to jump forward in time, i can have something to break it up. The Tesseract video contains three of the clips I filmed, and a selection of tunes to go over them. I plan to have one piece to cover them all when I've settled on the one that fits best.

I'm working on the next video now, hopefully as I get better at talking to the computer and editing the videos i'll be able to put more content out. I also need to have reliable internet for it as I need to connect to the servers to record, then to youtube to upload. The two tours took just over two hours each to upload, a huge improvement from before we changed our internet where it would have taken up to 24.

A short end of the year post.

There hasn't been much to get excited about this year, but I've made it through so something had to be going right. I started the year in a very bad place mentally. I had just accepted that I was dropping out of uni, and after 4.5 years of fighting my various problems that was a huge blow. I tried so hard to keep going to uni the last couple of months but things were just getting worse and worse. It seemed the more I did to try and strengthen my back the more I made it worse. I was hitting my head against a wall with the NHS whose answer was very much a we don't know, we don't care to know and we won't try to help you attitude. My dr was lovely, the people he sent me to see just had nothing to offer. The final straw was developing IBS. It meant I was left with only codeine as a painkiller, something which meant that I couldn't always leave the house and was the last nail in the coffin for my hopes of a degree.
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So fast forward a couple of months living in the house in stoke, visiting my best friend when I could and enjoying the company of my housemates, one of whom was also home most of the time due to chrones. There were a few tense weeks when Cleo ended up in hospital. I was very concerned for her, but she was fine after her op. It hurt a lot to go to the hospital everyday, but an acute illness in a friend feels far more important than a chronic one in myself.
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During that time, Ainsley and I joined a group of Europeans forming a competitive minecraft team. The original idea was for a group of us to train together for competitions on champions of the map servers. These are a series of challenges where you are fighting through dungeons and at the same time fighting the opposing team with a bow and arrow. Both teams have a symmetrical "lane" which is surrounded on all sides by a void, so if you get knocked off your lane you die losing everything you held. The idea is to collect a number of blocks from the dungeons and place them all on a victory monument before the other team. Due to my ill health and my computer having a terrible habit of crashing I had to stop training to be on a team, though I do join sometimes to help the practising of our main teams. One of our members set up a normal server for us all to create a minecraft community on. The tesseract server is great fun, we have many community projects, as well as all having our own section of the world where we can create everything we can dream up. There is no limit to how much of the world we use, so long as we don't try to build through someone else's project. If we want more space for a new idea it's simply a case of running out to a new area of land. I'll make a post of the server soon. We recently started a minecraft feed the beast server, another member of the group is hosting it for us. This is a heavily modded version of minecraft with many amazing new things to craft and interact with that causes your creativity to go in entirely different directions.
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So I've come to the summer, my tenancy ran out and not having any income as the benefits system is a joke I had no choice but to move home. I have no major problem with being home. I wish my sister wasn't also back home, though if she would just accept that and adapt to it for now we'd be much better. I've gone from being able to have 3 people cooking together in a tiny galley kitchen to having a much larger kitchen where if she's in there I can't even go get a glass of water. It has been very tough here, at first my best friend was a couple of hundred miles away and the distance was horrid, now it's even worse as she's only around 20 but it might as well be a hundred for my ability to travel it. Part of the problem has been that my scooter's engine blew so it's not been up to the journey, but i'm also not up to it. If I go over, I have to pack for several days so that i'm not sitting in the car for the trip twice in one day. In many ways it's worse being so close yet still unable to see each other much.
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Sometimes I make it out the house on a saturday to meet up with a group of friends, we get together to play magic the gathering and, dungeons and dragons. This has been great when I can do it, though the pain is almost not worth it. It hurts like hell on the night and for several nights after.
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Christmas was nice in as much as being a few days to chill with mum and dad when I could manage to sit downstairs, but rather meh. I'm feeling so depressed all the time now and it's a real struggle. I tried to go out for a ride to clear my head just now, but my scooter is refusing to start. So I'm sat writing this blog entry instead. Hopefully sometime soon I get accepted onto ESA and can at least then afford more than just my groceries. I recently started a new exclusion diet called FODMAPs which will hopefully help with my IBS. If we can get it under control I hope to start losing this weight I've been putting on all year.  I should soon be hearing from a living with pain course which gives coping strategies for chronic pain. My future right now just feels rather bleak and I can't see anything changing anytime soon. Fingers crossed for the upcoming year.

Dungeons and Dragons

Saturday was great. Had my MRI, which hurt to lay on my back for but was fine. Just waiting on the results. I went without my binder, which certainly confused a couple of staff. This was decided to increase my chances of making it out saturday evening.

Well, I made it out. :D

So I joined the guys and we started up a game of D&D. I have a little experience of the game from uni, but that was played with experienced players who could tell me exactly what to do with dice and setting up my character, so all I had to do was role play it. Now, it's the four of us where I'm the only one to have ever played before.

It was brilliant fun. We entered our first dungeon, and almost immediately ended up visiting a dragon. This encounter required a lot of role playing, as we had to negotiate with the dragon to avoid getting into a fight. Alas, we failed and it attacked. Fortunately the two of us with stealthy characters managed to steal its' treasure while it was distracted and convinced it to stop in exchange for its' treasure back.

Afterwards our characters took a short break to heal and decided to try entering the dungeon a different way. This got us into a battle with a couple of enemies which was ok until they called for 2 much stronger reinforcements. We survived, but the two encounters had taken so long that we ran out of time. We'll have to venture further into the dungeon next week. Hopefully I make it, if not I'll have to play over skype.

Hmm

Well, I had my appointments. Got my referral back to charing cross sent off. Just waiting to hear from that. It was a slow process the first time so I'm not concerned at the moment.

Rheumatology appointment was a little less successful. He decided he didn't think it was hypermobility but gave me a diagnosis of fibromyalgia instead. I'm not happy with this as it doesn't fit. He assured me that I'd read up on it (he gave me a leaflet) and things would click and i'd relate to it. Claimed it would explain most of my problems "even the gastric ones".

LIES!

Fibromyalgia doesn't explain a thing. IBS is common with it, but my bowel issues were caused by medication and in terms of things, is a recent problem. My stomach problems aren't covered by it. Fibro's main symptom is muscular pain, and tendon pain with it. My pain isn't muscular, it's right in my joints where the leaflet states it won't be.

The main test for fibro is pressing on a variety of areas on the body to check if they are tender, as all fibro patients have this symptom even though nothing is physically wrong. Well he checked several, not one was tender. So how, upon failing the main diagnostic criteria did he end up at this conclusion?

Personally it feels like it's just a label for "we don't know but acknowledge you feel the pain", a label which says don't bother looking for an answer, we sure won't.

The only good outcome was that he's sending me for an MRI on my back to rule out any physical problems there. Frustratingly it's on saturday. While I'm very happy it's come through so quickly, I haven't been to one of my friends' weekly gaming nights for ages and am trying to not do anything to upset my back so that I can go out saturday evening.

Fingers crossed I'll be ok.

Musings

Today I have the appointment which should get me my referral back to the charing cross gender identity clinic. After which I will hopefully be able to get funding for my mastectomy, which will allow me to have a much better quality of life.

However I'm finding it hard to be enthusiastic as every movement hurts like hell, and I'm not even wearing my binder yet.

It's frustrating that, while still rather sedentary, I'm doing more now than I was up in stoke. I'm upright more of the time, using my core muscles more, yet my back is getting worse and worse. My lower back might be improving, or my upper back is so painful I'm not feeling it as much. My physio has me working my core from the bottom up, so I should see improvement in my lower back first anyway, I just hope it is improving.



It's a week until I have my appointment with the rhuematologist. I'm very nervous about it. I'm really terrified that he's going to tell me that we've got it wrong and hypermobility is the wrong diagnosis, or that it's correct but there's nothing to be done. It's like having all my eggs in one basket, my hopes are pinned on this appointment. On finally having an answer for a life of problems.



I've been watching the paralympics this week, I love it. I just wish channel four was broadcasting it better. We're seeing such a limited selection of events. I'd love to have seen the boccia or the equestrian, the long jump, or even the club throw. We've seen the odd clip of all of them, so there are definitely cameras at every event. Instead we just have day after day of track, swimming, and a court event (basketball, football, tennis. etc). They have four channels of the event but only three sports get represented.

People often say they are inspired by watching the olympics and paralympics to take up a sport and try to get to the olympics themselves. There are several sports I'd love to get into, but I learnt years ago that trans people can't compete at most major sporting events. So I can't find the inspiration to apply that much dedication to a sport.
There are sports however that I enjoy in a non-competative way. I've always loved swimming just for the sensation of being in the water, I hated the focus on speed that was always placed on it. I love badminton, as just a jolly game between friends, rather than as a fast paced competition. I need to get that mastectomy before I can use a public pool again though, and fix my back before I can do racket sports.
I'd love to take up kyaking, or canoeing. I've loved the sensation of gliding over the water from the experiences of it I've had. I really hope that my body gets to the point where I can take it up. There's a local club on the canal which I could look into joining if I could reliably attend.

It's something to aim for. :)

Friends

Yesterday I was feeling rough from the day out for my birthday, but decided not to cancel my friends coming to visit as I missed them so much. We had a lovely evening catching up, but the night was rough and today I'm struggling.

My best friend whom I met in Stoke is originally from the south like I am, and in fact lives just 30 minutes away by car. When I left stoke I had no idea how long it would be before I saw her again, and shortly after it was looking like it would be a good year before she could come down. Things were getting too much for her though and two weeks ago she suddenly got a friend to help her move down as she just couldn't deal with stoke any more.

Last night was the first chance I've had to catch up with her and I wasn't going to cancel for anything.

Sometimes I feel bad complaining about my situation as much as I do. Especially when I have a friend who is much worse off than I am. While situations are subjective, and he doesn't have the all encompassing pain I have, he does have an all encompassing illness which keeps sending him to hospital.

My friend has chrones, a horrid condition which causes inflammation and ulceration of the intestines and bowels. He goes for days unable to eat a thing, and is very sick from a variety of complications it causes. Much like how I often can't leave the house due to pain, he often can't leave because he is simply too ill to go anywhere, and needs quick access to a toilet at all times.

He's in hospital right now, with the possibility of major surgery hanging over his head. Yet you will never hear a word of complaint out of him. Somehow he always manages to be there for everyone who knows him when he himself should be the focus of our attention.

He's an inspiration, and the nicest gentleman you could ever wish to meet.

Happy Birthday to me

In case you decided to skip the title, It's my birthday!

Woo.

Well, minor woo, but I'm trying to be cheery.

Didn't get any presents but did get taken to afternoon tea with my parents at a really nice expensive hotel, which cost as much as a present. Got some lovely cards, and I'm told there is a present from a friend on its way. ~\(^_^)/~

Only downside to afternoon tea is the food hates me. Stomach is all painful now, but it's totally worth it. The lovely waitress gave us 3 servings of sandwiches, which was very unexpected. Then we had 2 huge scones each, and a large selection of cakes, several of which are in the fridge for tomorrow. If you get the opportunity to have afternoon tea somewhere I really recommend doing it. It's such a wonderful way to spend an afternoon. We are surrounded by stately homes in the south so we are really lucky to have many gorgeous places to visit.

I hurt like hell tonight though. I took lots of painkillers before we left the house and sat with a cushion supporting my back while we were out, which helped me get through it. It's a shame my back is so bad though as it would have been lovely to go for a walk through the grounds. My knees also got annoyed at me, but they've done that forever.

My right knee was terrible on Sunday. I went to bed with a funny hip Saturday and woke with my hip and knee out Sunday. Couldn't really get them back in so spent the day propped up trying to keep the other hip in. I managed to see the Olympic closing ceremony, from my position propped up on the floor. Pain was managed okish until i tried to go to sleep. The change in position was so painful, I was awake for hours just praying for it to get better. Finally managed to sleep and woke up with everything back in place, just very sore. It's happening more and more often, which sort of scares me.

I was having a bad day yesterday, feeling rough and things were getting to me. Ended up shouting at my mum for something which was totally out of her control, well ish but I won't get into that as most of the problem is mine and not dealing with it really is the better option as bitter as it makes me. Fortunately my scooter is now fixed, thank you dad! :D , so I took myself out on it to clear my head, after spending half an hour calming down a little so i didn't drive recklessly. Was lovely to be back on my wheels after 2 months away from them due to the engine failing. My poor back didn't appreciate that either, but it was totally worth it. When I got home I went and apologised to mum.

Got to stop abusing my back and give it some rest, but my best friend wants to visit tomorrow and I'm too lonely to say no. I've made sure I know what time she's coming so I can time my painkillers around it, and give my back a good rest until she comes.

Then a couple of days rest me-thinks. All this pain is making me crabby and I can't go yelling at mum again.

Hypermobility Syndrome II

So as promised, today's post is about ways in which my problems affect me daily. At the end of each explanation I'm going to give a pain rating out of 10. I know this is long, but please take the time to read it. I'm not after pity, but am trying to get the message out that this is a serious condition, and we sufferers are not just lazy, we are fighting constantly to do anything. Every action has to be considered to see if it will take too much out of me to do the rest of the day's tasks. A great explanation can be found here,The spoon theory

When walking I am at constant risk of my ankle popping out of place. This movement as it pops is horrid to feel and the pain is incrdible. Trying to put the foot down before I've managed to pop it back into place is excruciating. 9/10 while popped, 7/10 for next few hours.

While doing anything involving my hands the knuckles often dislocate. This hurts at a 6 or 7, and the first few times a day doesn't hurt too much when fixed, but over the day builds to a constant 6 or 7.
My thumbs are more painful, popping at an 8/10 and staying that painful. This means I have to be careful lifting a drink, carrying my dinner to the table, braking too hard when riding.

Similarly many actions involving the hands bend the joints backwards. If I'm exerting pressure through the joint which flips backwards it's very painful, this is a pain which builds quickly and dissipates slowly. Combined with the dislocations its a large part of why I struggle to knit/crochet these days, and why I prefer chopsticks over a knife and fork. 7/10

Due to the lax ligaments, I have what is known as knock knees. This means that if my thighs are parallel, my calves are pointing away from each other slightly. This causes my patella to skip out of the groove it's supposed to slide in. The actual popping out of the groove isn't very painful, maybe only a 3. The problem comes when I bend my knee while it's out, as it cant slide it sits still until the ligaments reach their maximum length causing it to jerk back into the groove, that's a 6-9 depending on how strained it got before jerking into place.

Moving my arms at all is a problem, as my shoulders are regularly out of place. Often as I lift something it pops out, or if it was out pops in. The strain on the structures of the joints is causing damage. The longer it goes on the higher the pain, it's a constant 5 minimum, often a 9, with pain which radiates through my entire arm. When the shoulder subluxes it puts pressure on the bones of the upper arm, which pressurises the elbow, twisting the bones of the forearm, until it starts to cause problems in the wrist. 9/10

Sneezing is incredibly painful. It causes my spine to pop and crack against itself and the ribs, and often damages the cartilige holding those ribs in place. 10/10

Simply breathing is also a problem for the same reasons. The joints holding my ribs in place are damaged as the cartilage isn't up to its job. The ribs therefore move where they shouldn't and the muscles get damaged trying to take up the strain. 4-8.

As a general problem, my ability to move too much causes the facet joints of my spine to compress and slide against each other a lot more than is normal. I am in permanent back pain from the combination of inflammations in my vertibrae, ribs, and the connective tissues/muscles jointing them. this varies from 6/10 the moment I wake to 10/10 when I 'm in bed crying.

Laying down to sleep is a real problem, by laying i'm putting pressures on my shoulders and ribs, if not situated properly a subluxed shoulder being laid on is extremely painful, so I have to work all my joints into place as best as I can everytime I want to lay down. The ribs exert pressures on my spine, which feels like it is being ripped open and bent at funny angles, though i'm pretty sure nothing like that is happening, it just hurts like it is. It also exerts pressure on the sternum, which cant flex with it like the spine, so the ribs tear at their cartilage and the muscles over it instead. Laying down to sleep is always an 8-10, and is the time of day I take most painkillers. I will often take codeine, wait an hour for it to kick in, get 1-2 hours sleep, then wait 1-2 hours to be able to take another dose, and manage another couple of hours of sleep. So to get a good sleep i'm in bed for far longer than is normal. If I have to be up everyday, like i did in uni, I have to exist on a maximum of 2-4 hours a night.

There's also the problem of chronic fatigue. Even before the pain got so bad I can't make it more than a couple of hours asleep at a time, I was exhausted. This kicked in 7 years ago, in which time there have been 3 mornings I've woken up feeling good. Everything is a battle when you wake up feeling like you haven't slept.

An interesting problem we bendies have is that we tend to have odd reactions to painkillers. It may take 6 injections of anaesthetic at the dentist to work for example. Personally I have a problem that I don't get a great deal of pain releif from tablets, but I do get the high to an extreme. I take codeine to manage my pain, 15mgs to take the edge off most pains but leave me lucid enough to get on with tasks. 30mgs will knock an 8 to a 6 but leave me very high, and somewhat struggling to function. If I'm at a 10 and trying to sleep I will take 45mgs. It's not so much that it deals with the pain, it only sees to knock it down to an 8, but it makes me so high I don't really care. This was the problem I had when I was taking tramadol. I got no pain releif from it, but even the lowest dose of it made me totally whacked. I couldn't focus, I was giggling at the ceiling as time just flew by unnoticed. I was useless, but at least I wasn't feeling the pain. I stuck it out for a couple of months while I got used to being in pain all the time, then stopped taking it. I made the decision to accept being in pain over being stupidly high all the time. A lot of days go by where I don't take any codeine, it's not to say that I'm not in pain, i'm often crying with it, it's just that I need my brain for something. Those days consist of being in bed all day though, no way I can get up and move around without being sent into too much pain. I hate being relient on painkillers, i especially hate how they take my brain from me. However it looks like this pain is here to stay. So I should probably just take that 15mgs every 6 hours and accept that it's now a part of my life.

Hypermobility Syndrome

Wow it's been a long time since i posted. This will hopefully explain things better than my previous post.

Lots of things have happened. I've moved back into my parents home, changed drs and actually started getting somewhere with my ilness. I've also come to terms with the fact that even if in the future I will be well enough to return to university, it wont be for several years.

I'm very close to finally having a diagnoses. I first noticed I was really getting ill when I was 15. I came down with chronic fatigue, and all over joint pain. I ended up taking a month off school.

While I learnt to cope, this never actually improved. It looks like I may finally have the diagnosis though. My new physio has said the same thing the muskuloskeletal specialist did. That I am hypermobile. However, instead of then continuing with "so there's nothing we can do" she has started me on a long course of treatment which will hopefully over the coming year improve my quality of life. I also hope to get this as a diagnosis on paper.

One of the biggest problems with not having a diagnosis is that I am constantly told off for making up excuses for everything. I don't make excuses, but without a name for my problems I have to explain in terms of what is causing me the problems on a specific day.

My range of problems inclues:
* Migraines
* Subluxing ribs
* subluxing shoulders
* subluxing hips
* dislocating ankles
* dislocating knee caps
* dislocating fingers and toes
* chronic fatigue
* chronic back pain
* Locking elbows and knees

Together these cause a range of problems. Everyday when I wake up I have to put all my joints back in their sockets. So I may one day have missed uni because I woke with my hip dislocated and it was all I could do to walk to the bathroom. The next couple I might have been stuck in bed with a migraine, which comes with the added fun of worsening my visual issues so I can't actually tell where the floor is or what way up it is. The following day I might dislocate my thumb so I can't hold a pen. To my lecturers it seems like I always had an excuse.

This is why I hope to get an official diagnoses. How great it will be to be able to just write, Hypermobility syndrome, as my reason for ilness. There's a very large chance that I will get diagnosed with Ehlers-Danlos syndrome, a genetic form of hypermobility (which nearly all hypermobile people fit into, just not all get correctly diagnosed, or arent affected enough to have a problem). I very much so match the criteria for the diagnosis, it just needs to be confirmed via tests such as a genetic blood test.

There are many forms of Ehlers-Danlos (EDS). The main varieties are types 1 to 4. Types 1 and 2 are known as classic EDS. These often present with less pain than types 3 and 4, and are characterised by the skin involvement. Their skin can stretch a lot further than in a normal person, while all forms of EDS have some minor skin involvement classic patients have distinctly different skin. The skin is described as velvety and smooth, and stretches far when pulled. Type 3 is the hypermobility type, Much like how classic types have an exaggerated form of skin involvement, hypermobile types have extremely flexible joints. This is a painful type to have, though along with types 1 and 2, is generally not life threatening. Type 4 is vascular. This type is dangerous, even more so if undiagnosed. Vasular sufferers are at risk of sudden rupturing of blood vessels, especially arteries, and many encounter heart problems as the structures of the heart stretch and rupture.

Personally I think I have type 3. My skin is stretchy, but not to the extreme. My joints are all very lose though. I score a 9 on the 9 point beighton scale which is a measure of hypermobility. The average person scores a 0, up to a 4 can occur in some people without EDS, but 4/5 and higher is a cause to get looked into. The points are as follows:

* 1 point for each pinky finger which can bend past 90 degreees.
* 1 point for each thumb which can be bent down onto the wrist.
* 1 point if you can place your hands flat on the floor whilst standing with knees straight.
* 1 point for each elbow which can hyperextend
* 1 point for each knee which can hyperextend.

There are also distincive featres such as extremely flexible ears, which can be bent and folded up on themselves with no discomfort or resistance. The joints of the fingers and toes tend to bend backwards, which is really painful when writing or using a knife and fork.

I'll be seing my dr on wednesday and hope to get referred to someone who can give me a firm diagnosis. I'll write another post tomorrow covering some of the daily things which being hypermobile causes me issues with. Right now I'm hurting too much to type anymore.

Thanks for reading :)

Hypermobility

At a recent appointment it was mentioned that my joints are hypermobile in an offhand comment. Well, it was phrased as there's nothing we can do for your pain because your joints are hypermobile.

A while before that appointment I had already come to the conclusion that I probably hadhypermobility. The general test for it is a checklist of 9 items,

Placing flat hands on the floor with straight legs
Yup, even at my size, no problems doing this.

Left knee bending backward
Right knee bending backward
I've always been told off by physio for over extending my knees.

Left elbow bending backward
Right elbow bending backward
I wasn't aware I did this as I rarely have my arms out straight, but it was pointed out at a recent appointment.

Left thumb touching the forearm
Right thumb touching the forearm
Always have been able to, still as easy as it ever was.

Left little finger bending backward past 90 degrees
Right little finger bending backward past 90 degrees
They're the least flexible of my fingers, but they do bend easily beyond the 90 degree mark.

So, that's a maximum score of 9,of which I score 9. But of course, there's nothing wrong with me and all my problems are in my head. (please note the sarcasm there)

I'm really fed up of being told there is nothing wrong with me. Or that I'm too young to have chronic pain issues, or that the problems I have can't happen even though there are hundreds of people I've managed to find cases of with the same problems as me.

It seems that there needs to be much more awareness of this problem. Hypermobility can be, and is, debilitating. It needs to be carefully managed with painkillers and physio. Now I can't take ibuprofen any more, as it made me ill, so half of my pain management is gone. The only physio I've managed to see (referred for my back) has assumed that I just have the typical student bad back so doesn't care that the exercises she gave me make the problem worse not better. I've not even had an examination of my back. Just a line of doctors making assumptions.

I guess the silver lining here is that I'm moving house soon. I'm moving back to my parents as I need to get away from my NHS PCT, and the PCT back with them has a proven track record. So fingers crossed, I can register back down south and get referred to someone who can help.

Until then, I guess I get to spend my days in agony, living on painkillers and boredom. Woo.