Hi, Im rosieBlue and Im disabled.
I have a genetic condition called Ehlers-Danlos Syndrome and also Postural Orthostatic Tachycardia Syndrome (EDS & POTS). They impact my life immensely and whilst I could just give you links to different websites listing symptoms and what not, I doubt youd bother to read them, and I also doubt itd give you a true sense of what its like to have one of these conditions. Im in the process of starting up my own charity, called Well, which I aim to use as a means to offer support and information to those with, or supporting those with a hidden disability. Im always very happy to talk about it not for sympathy, but because I think it helps if people have the knowledge and understanding of such things, especially in regard to some of my behaviour and additional needs. If someone is willing to listen, then I will talk openly and honestly about what I incur as part of daily life. I find those who care enough to ask, are the ones that make good friends. And so, Id like to tell you about what my experience is of EDS and POTS not in a plight of woe is me, but because hidden disabilities are still greatly misunderstood in society and this causes a lot of difficulty for those who suffer. I hope that by telling you from first hand experience, it might shed some light on the subject for those who wish to know. [Ive kindly separated things into different spoilers so you can pick and choose what youd like to read]
[condition info]
I have a genetic condition called Ehlers-Danlos Syndrome and also Postural Orthostatic Tachycardia Syndrome (EDS & POTS). They impact my life immensely and whilst I could just give you links to different websites listing symptoms and what not, I doubt youd bother to read them, and I also doubt itd give you a true sense of what its like to have one of these conditions. Im in the process of starting up my own charity, called Well, which I aim to use as a means to offer support and information to those with, or supporting those with a hidden disability. Im always very happy to talk about it not for sympathy, but because I think it helps if people have the knowledge and understanding of such things, especially in regard to some of my behaviour and additional needs. If someone is willing to listen, then I will talk openly and honestly about what I incur as part of daily life. I find those who care enough to ask, are the ones that make good friends. And so, Id like to tell you about what my experience is of EDS and POTS not in a plight of woe is me, but because hidden disabilities are still greatly misunderstood in society and this causes a lot of difficulty for those who suffer. I hope that by telling you from first hand experience, it might shed some light on the subject for those who wish to know. [Ive kindly separated things into different spoilers so you can pick and choose what youd like to read]
[condition info]
SPOILERS! (Click to view)
Now, there are quite a few hidden disabilities that are well known people understand, information is readily available and so people have some vague idea of what it entails and are, for the most part, patient and understanding. Im talking about things such as diabetes, autism and Alzheimers. But I have, as one doctor kindly put it one of those weird, rare conditions (needless to say this doctor and I didnt exactly hit it off given his pre-conceived prejudice about my condition). So some back ground; EDS is hereditary. Most commonly passed down on the mothers side, but not always. It often lays dormant, i.e. for several generations people may be carriers but show no sign of the condition. In this sense my case is typical I have it from my mum, and looking as far back as we can, Im the only person to suffer from the syndrome. It works at a DNA level, effecting the production of collagen in the body which therefore effects everything. Any thing that is skin, muscle, tissue of that relies on any of the above for its function, gets screwed over. Its quite rare in its full form (there are lesser forms, such as hypermobility syndrome), and very hard to recognise and diagnose. However the number of people with EDS is going up, as many people in the later life are getting the diagnosis they should have had decades ago. There are seven forms of EDS, I have type three classic or hypermobililty EDS. POTS is also very rare, but quite a common secondary condition to EDS. This affects your heart and circulation systems leaving your heart unable to control your heart rate or blood pressure, which in turn has its own side effects.
Now, there are quite a few hidden disabilities that are well known people understand, information is readily available and so people have some vague idea of what it entails and are, for the most part, patient and understanding. Im talking about things such as diabetes, autism and Alzheimers. But I have, as one doctor kindly put it one of those weird, rare conditions (needless to say this doctor and I didnt exactly hit it off given his pre-conceived prejudice about my condition). So some back ground; EDS is hereditary. Most commonly passed down on the mothers side, but not always. It often lays dormant, i.e. for several generations people may be carriers but show no sign of the condition. In this sense my case is typical I have it from my mum, and looking as far back as we can, Im the only person to suffer from the syndrome. It works at a DNA level, effecting the production of collagen in the body which therefore effects everything. Any thing that is skin, muscle, tissue of that relies on any of the above for its function, gets screwed over. Its quite rare in its full form (there are lesser forms, such as hypermobility syndrome), and very hard to recognise and diagnose. However the number of people with EDS is going up, as many people in the later life are getting the diagnosis they should have had decades ago. There are seven forms of EDS, I have type three classic or hypermobililty EDS. POTS is also very rare, but quite a common secondary condition to EDS. This affects your heart and circulation systems leaving your heart unable to control your heart rate or blood pressure, which in turn has its own side effects.
[a brief medical history of rB]
SPOILERS! (Click to view)
I first started showing signs that something wasnt right around 11/12, though now with the right diagnosis (which I only got in June of this year), weve been able to look back through my medical history and see that the signs were there much earlier. Basically, as I hit puberty, EDS hit me. It started with trouble with my right knee the knee cap would dislocate and Id suddenly find myself on the floor. Before long I was missing out on PE classes and had to leave the sports teams I was in. We were told it was just growing pains, itd be ok. As the years went on, things became more apparent, it was no longer just my knee I damaged my thumb, dislocating all three joints and tearing the ligaments, whilst using the softest ball imaginable. My wrists would click, joints would hurt, I became more clumsy and would spend days at home in tears from the constant pain in my hips. Despite all this I still did a lot at 15 I spent a month trekking through central America, I ran 15km races, I climbed trees, did voluntary work, started a promotions company, went out and walked every where. But the pains were persistent and after years of being shrugged off by my GP, my mum, dad and I went in force to the GP and demanded that I was sent to a specialist I was 16, the worst of puberty was over and there was clearly something really wrong and I needed treatment.
Begrudgingly I was sent to the local hospital to see an orthopaedic specialist. A dick, truth be told. He poked, prodded, gave no sympathy and had useful terms like oh dont be silly, its JUST your knee cap dislocating. And off I was sent with no follow up appointment and 6 weeks of physio. I loved my physiotherapist, she was lovely and understanding, but with an inaccurate diagnosis of benign hypermobility, they obviously didnt know what to do and I was given exercises that either didnt help, or made things worse. What I did like however, was having someone on call to put my dislocated hips and shoulders back into place, and her willingness to give me the deep-tissue massages my aching body needed. However working on core muscles did nothing for me, bar proving my inability to stand on a trampoline on one foot for 10 minutes.
So that was it I was sent off into the big bad world, none the wiser as to what was really wrong (I just knew the diagnosis was wrong), and no clue as to how to treat it. But I did all the normal things moved out, went to college, got a job. But things got worse. I couldnt get up the stairs, I couldnt shower, I couldnt get out of bed or cook for myself. So time and time again I went back to my GP, stating that I was in pain, that I needed more physio I needed something! But he would repeatedly go back to my inaccurate diagnosis, tell me it was benign, and to get on with it. No physiotherapy, no pain killers, nothing.
I first started showing signs that something wasnt right around 11/12, though now with the right diagnosis (which I only got in June of this year), weve been able to look back through my medical history and see that the signs were there much earlier. Basically, as I hit puberty, EDS hit me. It started with trouble with my right knee the knee cap would dislocate and Id suddenly find myself on the floor. Before long I was missing out on PE classes and had to leave the sports teams I was in. We were told it was just growing pains, itd be ok. As the years went on, things became more apparent, it was no longer just my knee I damaged my thumb, dislocating all three joints and tearing the ligaments, whilst using the softest ball imaginable. My wrists would click, joints would hurt, I became more clumsy and would spend days at home in tears from the constant pain in my hips. Despite all this I still did a lot at 15 I spent a month trekking through central America, I ran 15km races, I climbed trees, did voluntary work, started a promotions company, went out and walked every where. But the pains were persistent and after years of being shrugged off by my GP, my mum, dad and I went in force to the GP and demanded that I was sent to a specialist I was 16, the worst of puberty was over and there was clearly something really wrong and I needed treatment.
Begrudgingly I was sent to the local hospital to see an orthopaedic specialist. A dick, truth be told. He poked, prodded, gave no sympathy and had useful terms like oh dont be silly, its JUST your knee cap dislocating. And off I was sent with no follow up appointment and 6 weeks of physio. I loved my physiotherapist, she was lovely and understanding, but with an inaccurate diagnosis of benign hypermobility, they obviously didnt know what to do and I was given exercises that either didnt help, or made things worse. What I did like however, was having someone on call to put my dislocated hips and shoulders back into place, and her willingness to give me the deep-tissue massages my aching body needed. However working on core muscles did nothing for me, bar proving my inability to stand on a trampoline on one foot for 10 minutes.
So that was it I was sent off into the big bad world, none the wiser as to what was really wrong (I just knew the diagnosis was wrong), and no clue as to how to treat it. But I did all the normal things moved out, went to college, got a job. But things got worse. I couldnt get up the stairs, I couldnt shower, I couldnt get out of bed or cook for myself. So time and time again I went back to my GP, stating that I was in pain, that I needed more physio I needed something! But he would repeatedly go back to my inaccurate diagnosis, tell me it was benign, and to get on with it. No physiotherapy, no pain killers, nothing.
[When things started going right]
SPOILERS! (Click to view)
After years of being ignored, I had enough. Lets face it you KNOW if something isnt right with your own body. Think of it like a headache no one can see it, your head doesnt suddenly start emmiting a flowing green light or anything, but you suffer nonetheless. In much the same way, there were no signs of anything going on (unless you took my up on the offer to put your finger in the gap where my joints no longer met). EDS is a tricky bastard it doesnt show up in x-rays or blood tests, and for this I understand why my GP behaved the way they did rules of medicine: test for something, find evidence, treat it. I wasnt showing any evidence, but I was in constant agony and knew there must be something available someone out there who could help.
The brother of a friend of mine has EDS, though Im not sure what sort. But spending a lot of time at their house I saw a lot of similarities, and frustratingly, saw the help he was getting through having an accurate diagnosis. So with this as my starting point I started looking into EDS, saw the symptoms and realised I ticked every box, so went to the EDS society, got the name and address of one of their patron consaultants and promptly marched to my GP demanding I was given a referral. Which he did, again stating it was a waste of time, but did as I asked.
Now I will name names, only as a) thanks to the great people who have finally helped me, and b) as a starting point for anyone in the U.K who is reading this and has some alarm bells going. I went to see Dr. Michael Shipley at the UCL hospital in Euston, London. He is a wonderful, kind, softly spoken, understanding and empathetic man. He took the time to do a full history with me, a full check on the Beighton scale (the measure used to dertermine hypermobility) and promptly put me through as an urgent case for a pain management course. He also was polite enough to speak to both myself and my partner, and gave me a follow up appointment following the start of the pain management course. I didnt get a diagnoisis, but I did find someone who saw I was in need of help.
Pretty sharpish I got assessment appointments through from the pain management team at the National Hospital for Neurology and Neurosurgey, Queen Square, London. At this point I feel the need to point out something I hate London. I just cant handle it, too busy, too many people, too many different trains/buses/ place names. London and I have an on going love/hate relationship. So I head off, alone, for my assessments one with the physiotherapy team and one with the psychology team. I gave myself plenty of time, printed directions, and of course, got lost. The Neurology surgery and UCL are part of a group of hospitals known as UCLH (University College of London Hospitals), so when I got lost and asked wheres the UCLH hospital in my naivity, I was sent all over the shop. And ended up walking all the way back to UCL, only to be told I was at the wrong hospital and needed to find my way back. I missed my physiotherapy appointment and was in tears. I still had my psychology assessment, and they kindly understood that I was just frustrated I have waited years for this, fought so hard to get the right treatment and I fuck up my chance of getting on the programme because I cant find my way around London. Luckily the physiotherapist agreed to do my assessment by phone at a later date and I was put on the list for a programme that started September 2010.
After years of being ignored, I had enough. Lets face it you KNOW if something isnt right with your own body. Think of it like a headache no one can see it, your head doesnt suddenly start emmiting a flowing green light or anything, but you suffer nonetheless. In much the same way, there were no signs of anything going on (unless you took my up on the offer to put your finger in the gap where my joints no longer met). EDS is a tricky bastard it doesnt show up in x-rays or blood tests, and for this I understand why my GP behaved the way they did rules of medicine: test for something, find evidence, treat it. I wasnt showing any evidence, but I was in constant agony and knew there must be something available someone out there who could help.
The brother of a friend of mine has EDS, though Im not sure what sort. But spending a lot of time at their house I saw a lot of similarities, and frustratingly, saw the help he was getting through having an accurate diagnosis. So with this as my starting point I started looking into EDS, saw the symptoms and realised I ticked every box, so went to the EDS society, got the name and address of one of their patron consaultants and promptly marched to my GP demanding I was given a referral. Which he did, again stating it was a waste of time, but did as I asked.
Now I will name names, only as a) thanks to the great people who have finally helped me, and b) as a starting point for anyone in the U.K who is reading this and has some alarm bells going. I went to see Dr. Michael Shipley at the UCL hospital in Euston, London. He is a wonderful, kind, softly spoken, understanding and empathetic man. He took the time to do a full history with me, a full check on the Beighton scale (the measure used to dertermine hypermobility) and promptly put me through as an urgent case for a pain management course. He also was polite enough to speak to both myself and my partner, and gave me a follow up appointment following the start of the pain management course. I didnt get a diagnoisis, but I did find someone who saw I was in need of help.
Pretty sharpish I got assessment appointments through from the pain management team at the National Hospital for Neurology and Neurosurgey, Queen Square, London. At this point I feel the need to point out something I hate London. I just cant handle it, too busy, too many people, too many different trains/buses/ place names. London and I have an on going love/hate relationship. So I head off, alone, for my assessments one with the physiotherapy team and one with the psychology team. I gave myself plenty of time, printed directions, and of course, got lost. The Neurology surgery and UCL are part of a group of hospitals known as UCLH (University College of London Hospitals), so when I got lost and asked wheres the UCLH hospital in my naivity, I was sent all over the shop. And ended up walking all the way back to UCL, only to be told I was at the wrong hospital and needed to find my way back. I missed my physiotherapy appointment and was in tears. I still had my psychology assessment, and they kindly understood that I was just frustrated I have waited years for this, fought so hard to get the right treatment and I fuck up my chance of getting on the programme because I cant find my way around London. Luckily the physiotherapist agreed to do my assessment by phone at a later date and I was put on the list for a programme that started September 2010.
[The Pain Management programme]
SPOILERS! (Click to view)
Off I went, happy as larry. Well, for the most part at least. My coping mechanism for the past few years had simply been to ignore it. Push the pain to the back of my head, and carry on, forget about the dislocated hip and keep walking. And I knew that the whole point of heading off to this course (called COPE), was to do the opposite. Acknowledge the pain, focus on it, talk about it, feel it. And I didnt know if I wanted to do that. If I wanted to sit down and have to accept how much pain I was really in, as I hadnt done it since I was in school and spent days crying as it was all I could focus on. I didnt want that again, I was scared that to think about it would only make it take over my life again, that the only thoughts in my head would be about the pain and Id never be able to get my head trained to ignore it again. But still, I desperately wanted help and knew that my pleading ignorance, I wasnt doing myself any favours in the long run.
Now for whatever reason, this is when my health took a turn for the worse. I dont know if it was just going to happen any way, if its because the course made me slow down, or the extra travelling involved, because Id finally let myself give in to the pain or what, but after the first week of the intial 6 week course, I got sick. Realy sick, really quickly. And oddly Im glad if it was going to happen then it couldnt have happened at a better time. Here I am in a room with some of the best people in the country, and theyre able to see me at my worst and so can help me work from there. With this thought keeping my focused I fought through the pain and have made every session bar one, which Im very proud of.
COPE uses something known as a multi-discaplinary approach. I.e. a selction of specialists come together for a good, well-rounded look on things. We had nurses a general for medication and a sleep nurse, psychologists, physiotherapists, and two guest speakers. One talk was from a consaultant, who did a great job at explaining why EDS sufferers are in constant pain in brief, our nervous system is broken at our nerves dont know how to use the off switch when sending messages to the brain. And the other was from Prof Rodney Grahame who is the top EDS specialist, and so we were very lucky to have him talk to us.
The course was fantastic. A friend from work appeared on the first day which surprised me I had no idea she had EDS, let alone that she was on the course, knowing someone with the same thing, facing exactly the same problems with work etc was fantastic. But the rest of the group were so lovely as well. I made some friends who I still stay in touch with the support network is possibly the greatest thing Ive taken away with me. As well as some good phsyio info on exercises (as surprise surprise, very little works and theres very little we can do without damaging ourselves) and also on how to work through the constant whirl of good and bad days. And the psychiatrists were great, and Id say the best thing I got from them was to focus on communication. And since then Ive been a lot more open to talking to people telling them what Im going through, how it effects me and the help I need. I guess before I didnt want to show vunrability, but Ive learnt that lying and hiding my problems will just come back to bite me at some point or another, and I cant expect people to understand if they dont know what the hell is going on.
Id also just like to give thanks to the staff there. Everyone was so lovely and went above and beyond what I could have expected. As well as regular group meets following the 6 week course, they have given me personal appointments, written letters to help with work or housing needs. I really couldnt have asked for more, or praise them enough. The rest of the NHS could do with taking some tips off them!
Off I went, happy as larry. Well, for the most part at least. My coping mechanism for the past few years had simply been to ignore it. Push the pain to the back of my head, and carry on, forget about the dislocated hip and keep walking. And I knew that the whole point of heading off to this course (called COPE), was to do the opposite. Acknowledge the pain, focus on it, talk about it, feel it. And I didnt know if I wanted to do that. If I wanted to sit down and have to accept how much pain I was really in, as I hadnt done it since I was in school and spent days crying as it was all I could focus on. I didnt want that again, I was scared that to think about it would only make it take over my life again, that the only thoughts in my head would be about the pain and Id never be able to get my head trained to ignore it again. But still, I desperately wanted help and knew that my pleading ignorance, I wasnt doing myself any favours in the long run.
Now for whatever reason, this is when my health took a turn for the worse. I dont know if it was just going to happen any way, if its because the course made me slow down, or the extra travelling involved, because Id finally let myself give in to the pain or what, but after the first week of the intial 6 week course, I got sick. Realy sick, really quickly. And oddly Im glad if it was going to happen then it couldnt have happened at a better time. Here I am in a room with some of the best people in the country, and theyre able to see me at my worst and so can help me work from there. With this thought keeping my focused I fought through the pain and have made every session bar one, which Im very proud of.
COPE uses something known as a multi-discaplinary approach. I.e. a selction of specialists come together for a good, well-rounded look on things. We had nurses a general for medication and a sleep nurse, psychologists, physiotherapists, and two guest speakers. One talk was from a consaultant, who did a great job at explaining why EDS sufferers are in constant pain in brief, our nervous system is broken at our nerves dont know how to use the off switch when sending messages to the brain. And the other was from Prof Rodney Grahame who is the top EDS specialist, and so we were very lucky to have him talk to us.
The course was fantastic. A friend from work appeared on the first day which surprised me I had no idea she had EDS, let alone that she was on the course, knowing someone with the same thing, facing exactly the same problems with work etc was fantastic. But the rest of the group were so lovely as well. I made some friends who I still stay in touch with the support network is possibly the greatest thing Ive taken away with me. As well as some good phsyio info on exercises (as surprise surprise, very little works and theres very little we can do without damaging ourselves) and also on how to work through the constant whirl of good and bad days. And the psychiatrists were great, and Id say the best thing I got from them was to focus on communication. And since then Ive been a lot more open to talking to people telling them what Im going through, how it effects me and the help I need. I guess before I didnt want to show vunrability, but Ive learnt that lying and hiding my problems will just come back to bite me at some point or another, and I cant expect people to understand if they dont know what the hell is going on.
Id also just like to give thanks to the staff there. Everyone was so lovely and went above and beyond what I could have expected. As well as regular group meets following the 6 week course, they have given me personal appointments, written letters to help with work or housing needs. I really couldnt have asked for more, or praise them enough. The rest of the NHS could do with taking some tips off them!
[the diagnosis and how Im affected now]
SPOILERS! (Click to view)
The COPE programme lasts for a year, so after our one year catch up, Im no longer under their care. Dr. Shipley discharged me after I started the programme, and so I was a bit stuck. I knew I needed more help, and more importantly a proper diagnosis. And now I was about to be left discharged from every clinic and with a cynical GP and health thats still worsening. Taking matters into my own hand again, I requested an appointment with Prof. Grahame, and was given one for June of this year.
Hes the most lovely man! A friend took me down again fortunately (in an odd way) I was having a bad day and needed my walking stick. We went through the symptom list ticking just about every box, and Prof G stating that he knew my answers before I said them, but had to ask nonetheless. Went through my medical history which shone light on all sorts: learning to walk late, clumsiness, headaches, stomach trouble all these things were due to EDS. Ive been pushed around different hospitals, doctors, clinics and put through some horrible tests (look up lumbar puncture if youre interested horrific and in my case, completely unnecessary). If my EDS had been picked up on, there wouold have been a lot less confusion and a lot of time saved. The only thing he couldnt work out is why I occasionally go blind.
I was told Im one of the most open and shut cases hes ever seen. I got my diagnosis there and then, as well as a preliminary POTS diagnosis. He was outraged at my GPs attitude, and that having my pleads ignored for years has led me to be registered disabled, using a stick and living in an adapted property at 21. I was immedietly refered to the Stanmore Orthopedic hospital for intensive physio. EDS is incurable, untreatable and unresponsive to pain medication including anesthetics and morphine. But theres now a specialist EDS unit in the UK! HURRAH! (There were two one in Leeds, one in London, but sadly the northern one has lost its funding). This does mean, that while I have to eat hospital food for three weeks, every member of staff understands. They all know whats wrong with me, how to handle me, how I can be screaming in pain but look fine. Its amazing!
So my plan for now is to stay off work. My contract ended in July, and Ive decided its best not to get into any new roles until Ive had my stay in hospital. I have hospital appointments on the 1st and 8th September, regarding my intensive physiotherapy and POTS testing. Something Im both looking forward to and dreading. No doubt therell be some Im still in hospital blogs to come. For now Im trying to keep things balanced, which is going quite well and I havent been suffering too much, and thanks to that Ive been reclaiming my social life (as you may have noticed). Its so nice to have my finances sorted, no work to worry about and being able to walk around and do what I want. Simple things like being able to walk to the shop, or get a bus are things Ive not been able to do for almost a year and I cant express how nice it is to get that independence back. To see my friends, treat myself, have people who understand and are willing to help. Its amazing. Its been such a long, hard battle but everythings finally falling into place. I even have Occupational Therapy coming by soon to look into getting my kitchen and bathroom better adapted to my needs which is exciting! My counters are too low at the moment which stops me being able to cook and wash dishes, so if that works out, its yet more normality back in my life.
So if anything is taken away from my ranting, let it be this you know if somethings not right with your body. So dont let anyone tell you otherwise. You might have to fight, threaten and raise your voice, it might take a long time, you might face a lot of dead ends, but its worth seeing it through to the bitter end to get the help you need and deserve.
The COPE programme lasts for a year, so after our one year catch up, Im no longer under their care. Dr. Shipley discharged me after I started the programme, and so I was a bit stuck. I knew I needed more help, and more importantly a proper diagnosis. And now I was about to be left discharged from every clinic and with a cynical GP and health thats still worsening. Taking matters into my own hand again, I requested an appointment with Prof. Grahame, and was given one for June of this year.
Hes the most lovely man! A friend took me down again fortunately (in an odd way) I was having a bad day and needed my walking stick. We went through the symptom list ticking just about every box, and Prof G stating that he knew my answers before I said them, but had to ask nonetheless. Went through my medical history which shone light on all sorts: learning to walk late, clumsiness, headaches, stomach trouble all these things were due to EDS. Ive been pushed around different hospitals, doctors, clinics and put through some horrible tests (look up lumbar puncture if youre interested horrific and in my case, completely unnecessary). If my EDS had been picked up on, there wouold have been a lot less confusion and a lot of time saved. The only thing he couldnt work out is why I occasionally go blind.
I was told Im one of the most open and shut cases hes ever seen. I got my diagnosis there and then, as well as a preliminary POTS diagnosis. He was outraged at my GPs attitude, and that having my pleads ignored for years has led me to be registered disabled, using a stick and living in an adapted property at 21. I was immedietly refered to the Stanmore Orthopedic hospital for intensive physio. EDS is incurable, untreatable and unresponsive to pain medication including anesthetics and morphine. But theres now a specialist EDS unit in the UK! HURRAH! (There were two one in Leeds, one in London, but sadly the northern one has lost its funding). This does mean, that while I have to eat hospital food for three weeks, every member of staff understands. They all know whats wrong with me, how to handle me, how I can be screaming in pain but look fine. Its amazing!
So my plan for now is to stay off work. My contract ended in July, and Ive decided its best not to get into any new roles until Ive had my stay in hospital. I have hospital appointments on the 1st and 8th September, regarding my intensive physiotherapy and POTS testing. Something Im both looking forward to and dreading. No doubt therell be some Im still in hospital blogs to come. For now Im trying to keep things balanced, which is going quite well and I havent been suffering too much, and thanks to that Ive been reclaiming my social life (as you may have noticed). Its so nice to have my finances sorted, no work to worry about and being able to walk around and do what I want. Simple things like being able to walk to the shop, or get a bus are things Ive not been able to do for almost a year and I cant express how nice it is to get that independence back. To see my friends, treat myself, have people who understand and are willing to help. Its amazing. Its been such a long, hard battle but everythings finally falling into place. I even have Occupational Therapy coming by soon to look into getting my kitchen and bathroom better adapted to my needs which is exciting! My counters are too low at the moment which stops me being able to cook and wash dishes, so if that works out, its yet more normality back in my life.
So if anything is taken away from my ranting, let it be this you know if somethings not right with your body. So dont let anyone tell you otherwise. You might have to fight, threaten and raise your voice, it might take a long time, you might face a lot of dead ends, but its worth seeing it through to the bitter end to get the help you need and deserve.
[on going battles
SPOILERS! (Click to view)
I though Id share some more with you in light of getting a perspective on the reality of a chronic condition. Theres some fights you cant win, some battles you have to fight every day, and some you know will show up again at some point. They may just make a task tricky for that day, they could cause you to loose something, or even be life changing.
For me, the hardest thing has come through people not understanding or not wanting to understand. Ive lost a lot of friends because of my health (well, people I thought were friends any way). Especially over the past year as my health declined and it took so long to recover. Ive done my best to communicate whats going on, some people get it, some dont. Ive lost three jobs because of my health, and that hurt. Ive spent years training and building a professional reputation, only to have it taken from me by something I cant control, with the knowledge that Ill never get it back. I decided to leave a fourth, as it was too physical and I felt Id be putting myself and the person I was working with in danger, they were understanding. The others were not. Constant meetings, arguments and almost took one of them to court very stressful times. Loosing friends has been a lot harder. People who are meant to be there for you, are meant to understand, and theyve backed off. Just about all of them. I can understand why, to an extent, but its disappointing and isolating when you need someone.
Other problems, which get in the way:
Fatigue - . Fucking horrible. And again, something that people just DO NOT understand. Theres a huge difference between being tired, and having fatigue. When you dont have the energy to do ANYTHING, eat, dress, wash. Its horrible, inability to focus, move, motivate yourself. And people think youre tired, or playing it up, but its disparing. And when it alternates with insomnia, its all the worse. And obviously effects mood, disturbs anyone else whos trying to sleep, productivity etc. Not good.
Diatry trouble I cant eat certain things because it dislocates my jaw. Sometimes my grips so bad I cant actually cook or eat, so I sometimes go a day or so without eating, or have to literally be fed. I sometimes cant dress myself, due to the nature of it bending, pulling, etc. Just isnt an option sometimes.
Mood swings this is for all sorts of reasons, pain, tiredness, sleep cycles, hunger, frustration. Obviously one that affects those around me more than it does me.
Bad circulation my blood pools. Collects in one part of my body and doesnt circulate properly round the rest of me. This leads to swelling, discoouring and poor temperature control. Im cold almost all the time, or feel like Im going to combust. Though I use this as a bit of a party trick if I stay still within 30 seconds I look like a corpse.
Movement Im very fidgety. A pain to share a bed with, or even a sofa. I twitch, I change position, I get up and walk around. Especially when in pain. I just cant stay still, Ive been told I look like a woman in labour, just pacing around.
Clumsiness theres some things I cant do, or Im not allowed to do. I cant help it, as my muscles dont work properly, and my nerves dont send the right messages to my brain, Im cursed to always walk into things/ drop things etc.
Spasms and twitching just fucking irritating
Paralysis so far its only happened twice, whilst other wise at my worst. But its fucking scary, Waking up and with no wanrning finding you cant move not pleasant. Its for this especially that I have SEVERAL key holders for my flat. Knowing this is a possibility means I need to know that someone is available when I need help.
Theres more, obviously. And thing like knowing certain activities/ jobs just arent available to me any more. Knowing Ill spend the rest of my life changing plans or cancelling outright as I never know when Ill get bad. Knowing studying will be more of a challenging, trying to pace things, knowing it will always affect any relationship I have its even caused a few family arguments, and the big baby debate as well.
I though Id share some more with you in light of getting a perspective on the reality of a chronic condition. Theres some fights you cant win, some battles you have to fight every day, and some you know will show up again at some point. They may just make a task tricky for that day, they could cause you to loose something, or even be life changing.
For me, the hardest thing has come through people not understanding or not wanting to understand. Ive lost a lot of friends because of my health (well, people I thought were friends any way). Especially over the past year as my health declined and it took so long to recover. Ive done my best to communicate whats going on, some people get it, some dont. Ive lost three jobs because of my health, and that hurt. Ive spent years training and building a professional reputation, only to have it taken from me by something I cant control, with the knowledge that Ill never get it back. I decided to leave a fourth, as it was too physical and I felt Id be putting myself and the person I was working with in danger, they were understanding. The others were not. Constant meetings, arguments and almost took one of them to court very stressful times. Loosing friends has been a lot harder. People who are meant to be there for you, are meant to understand, and theyve backed off. Just about all of them. I can understand why, to an extent, but its disappointing and isolating when you need someone.
Other problems, which get in the way:
Fatigue - . Fucking horrible. And again, something that people just DO NOT understand. Theres a huge difference between being tired, and having fatigue. When you dont have the energy to do ANYTHING, eat, dress, wash. Its horrible, inability to focus, move, motivate yourself. And people think youre tired, or playing it up, but its disparing. And when it alternates with insomnia, its all the worse. And obviously effects mood, disturbs anyone else whos trying to sleep, productivity etc. Not good.
Diatry trouble I cant eat certain things because it dislocates my jaw. Sometimes my grips so bad I cant actually cook or eat, so I sometimes go a day or so without eating, or have to literally be fed. I sometimes cant dress myself, due to the nature of it bending, pulling, etc. Just isnt an option sometimes.
Mood swings this is for all sorts of reasons, pain, tiredness, sleep cycles, hunger, frustration. Obviously one that affects those around me more than it does me.
Bad circulation my blood pools. Collects in one part of my body and doesnt circulate properly round the rest of me. This leads to swelling, discoouring and poor temperature control. Im cold almost all the time, or feel like Im going to combust. Though I use this as a bit of a party trick if I stay still within 30 seconds I look like a corpse.
Movement Im very fidgety. A pain to share a bed with, or even a sofa. I twitch, I change position, I get up and walk around. Especially when in pain. I just cant stay still, Ive been told I look like a woman in labour, just pacing around.
Clumsiness theres some things I cant do, or Im not allowed to do. I cant help it, as my muscles dont work properly, and my nerves dont send the right messages to my brain, Im cursed to always walk into things/ drop things etc.
Spasms and twitching just fucking irritating
Paralysis so far its only happened twice, whilst other wise at my worst. But its fucking scary, Waking up and with no wanrning finding you cant move not pleasant. Its for this especially that I have SEVERAL key holders for my flat. Knowing this is a possibility means I need to know that someone is available when I need help.
Theres more, obviously. And thing like knowing certain activities/ jobs just arent available to me any more. Knowing Ill spend the rest of my life changing plans or cancelling outright as I never know when Ill get bad. Knowing studying will be more of a challenging, trying to pace things, knowing it will always affect any relationship I have its even caused a few family arguments, and the big baby debate as well.
Ehlers-Danlos affects every part of my life. Its taken a while to realise and accept that, but I have now. And Im doing my best to learn how to take control back, but knowing what my body does will always be beyond my control is hard, knowing Ill never fully regain my independence is hard, and seeing friends who would rather walk away than try and understand, is hard. But I cherish what I have now, every little achievement I make that takes me closer to where I was, and all the people Ive met and opportunities Ive had because I have EDS.
And its made me who I am. Im not sure Id be so strong-willed, determined and head strong otherwise. If I hadnt had to stand up for myself so much, hadnt had the battles I have. I wouldnt have the patience, empathy or understanding I do, or the drive to start my own charity. And theres a lesson or two I would never have learned otherwise. EDS is a part of me, but its not who I am. It just helps make me who I am. And if you cant handle that thats your problem, not mine.
Now, if you dont mind, Im going to limp off and attempt to make a cup of tea (a dislocated wrist is a small price for such an epic blog, surely?).
X x
P.S. I'm happy to answer any questions you might have, link you to extra pages etc.
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Personally a simple cold can drive me up the walls but on the other hand I have a rare kind of migraine
to the delight of the doc... she was really excited when she found out how rare it was and how much according to the book on that... she did not even stop smiling when I asked her what can be done about it and she said, "Nothing."
and most of the time I donnot even think about it even as it can knock me out cold! LOL!
...am lucky, it has not happened for years.