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.
Thursday 16 August 2012
Tuesday 14 August 2012
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.
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.
Tuesday 7 August 2012
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.
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.
Monday 6 August 2012
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 :)
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 :)
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