Its been quite a year bendy-wise.
I thought I'd do a quick recap just to see how far I'v come in just one year.
Jan-Mar
*Xrays and Mri of spine show curvature of spine and degeneration of SI joints :(
*Assessed for my 1st wheelchair - sad times.
*Start investingations for Crohns Disease - come back clear - Yey!
*GI dr and EDS dr discover my Gastointestinal system is now affected by EDS.
*Reffered to endocronologist for suspected thyroid damage from medication
*Begin physio and Occupational Therapy at Leeds.
April-June
*Recieve my wheelchair. Amazed how much freedom I now have. :)
*Getting physio back at hartlepool. knees and hips getting weaker. Walking less.
*GI nurse and EDS dr agree lower GI system failing. :(
Start wearing ankle splints and hip belt to help walking.
*Using wheelchair indoors at least 3 times a week now. Standing becoming difficult.
*Pain med review no.8
July-Sep
*Pain becomes much worse.
*Pain meds review no.9. Introduce Neuropathic pain medication
*Start working with new physio who is keen to learn about EDS
*Try accupuncture for pain which triggers major pain flare
*Reffered for hydrotherapy
*Stomach gets symptomatic. Begin part-liquid diet.
Oct-Dec
*Begin Hydrotherapy with great success. Pain reduced and core stability improved.
*Major hip dislocation trigging escalating hip and pelvis instability
*Hip continues to dislocate and subluxate evenutally causing impingement and nerve damage.
*Referred to Orthopaedic surgean for both hips.
*Walking deteriates to point of needng chair outdoors full time and indoors most days. Unable to self-propel outdoors and sometimes indoors. Refferd for powerchair assessment.
*Begin fainting and admitted overnight after paramedics called after bad fall. Blood pressure very low and heart rate topping 143bpm when standing and 110 sitting. Dr on duty suspects Postual Orthostatic Tachychardia Syndrome. Rheumy agrees continueing readings and symptoms suggest autonomic dysfunction and requests further tests with possible reffereal for POTS testing.
*Rheumy requests refferal to Prof Aziz in london for GI isssues
*Endoscopy booked for 5th January for upper GI issues.
*Reffered to pain clinic.
Looking back its clear in which direction my EDS is heading for now. However I have found that even though my condition may have become worse over the past few months, my abiltiy to cope with it and the amount it affects my ability to get on with my life is very differnt to what it was at the begining of the year.
I wish all my blog readers and fellow EDSers a wonderful and healthy 2011!
cx
Sunday, 26 December 2010
New Rheumy, New hope?
I recently saw my new EDS rheumy(rheumatologist)
For people with EDS, the rheumy is the top of the food chain when it comes to our long list of drs and medical professionals we see regularly.
He is the guy who is the EDS expert, the one who understands what EDS is, how it works and how it affects our different body systems...that's when we are lucky enough to finally find a rheumy who specialises in EDS!
The EDS rheumy is the wedding planner of our medical care. He coordinates all the other drs, decides what should and shouldn't happen and pulls all the other drs' tests, work and ideas together to get a full picture of what is going on in the EDS body. He then rolls out orders to the GP (family dr) to refer the eds patient to new specialists if needed, order more tests, start new or change current treatments and keep him up to date with what is going on. He will also contact other specialists working with the eds patient either directly or through the GP to discuss current treatment with the aim to either stop proposed treatment/surgery (an orthopaedic surgeon may think ligament tightening surgery will stop a joint dislocating but a EDS specialist may suspect that it will not with this patient), suggest treatment or avenues of investigation the other specialist hasn't thought of, or simply just to keep uptodate or create a new network with the specialist for future patients.
My previous EDS rheumy was one of the country's (and world's) leading EDS/HMS experts. Professor Howard Bird has made some of the most important discoveries and moved the research and treatment of eds/hms forward massively since he began taking a special interest in the condition in his early career.
His retirement shook the eds/hms community and the proposed closure of the specialist clinic that he had set up in Leeds, UK was feared.
I had been lucky enough to have been a patient of Prof Bird for 1 year before his retirement. Although I had received my diagnosis in 2007 I hadn't received any real treatment so was finally refereed to Prof Bird in December 2009 where I received a thorough assessment. It is here I found out how bad my body was affected, how much my joints had deteriorated due to lack of treatment and how I had developed scoliosis (curvature of the spine) and osteoarthritis of the SI joints (where the spine meets the pelvis.
It was also Prof Bird who noticed the obvious EDS characteristics in my Mum and due to taking such a detailed family history we discovered that both my parents had the EDS gene. My mother very affected, my dad only mildly. My mum has since gone on to receive treatment for pain and physio and is now waiting her initial appointment with my new rheumy.
So back to my new eds rheumy.
I had been given his details before my final appointment with Prof Bird by a fellow member of the Hypermobility Association (HMSA) who recommended him highly. I knew that with Prof Bird's upcoming retirement I would have to find a new rheumy experienced in EDS.
I was told Dr S. was a great dr and Prof B agreed that he would be the best rheumy for me.
My 1st appointment couldn't have gone better. Dr S. and his staff were very welcoming and pleasent and it didnt take long for me to relax and laugh at an unfortunate gramatical error on a recent discharge note with him.
We covered my current EDS issues, mainly my ongoing gastointestinal deteriation and
a new set of symptoms that some drs are suspecting could be indicative of Postural Orthostatic Tachychardia Syndrome (POTS), a form of Dysautonomia that can occur in EDS (see links at bottom for info on POTS)
I was in with Dr S for over an hour! I had to apologise profusely to the lady following me but she didnt mind 'at least he's thorough' she said. That he certainly is.
I then had lots of bloods taken.
I received a copy of the letter Dr S wrote to my gp within days.
He has requested a referral to Prof Aziz in London for my GI issues with a referral to a local GI consultant with knowledge of EDS for long term monitoring.
He has also requested that I have a number of tests done before I see my endocrinologist at the end of January. These are to look for other causes of my dropping blood pressure and raised heart rate that suggest POTS just in case.
Finally Dr S has requested copies of all correspondence from physio, orthopedics, pain clinic, endocrinology, past GI investigation and recent xrays, mri (hips and spine) and an endoscopy I am due to have next week. (To see if there is anything non-EDS causing my upper GI symptoms).
I will not be having regular follow-up appointments with Dr S as I already spend at least 1 day a week at hospital with appointments. Plus Dr S is trying to set up a eds/hms clinic and it is not financially viable to offer regular follow-up appointments to all patients.Instead Dr S said I can phone up and ask for an appointment if I have any serious issues or I can arrange a phone appointment.
I am looking forward to seeing the eds/hms clinic taking off with Dr S as it is very much needed in the North East of England.
Dr S admits he may not have the knowdlege and expertise of Prof Bird, after all he is only young and just starting his work with eds/hms patients, but he is very open and the most important thing is that unlike some drs, he will take the patient's suggestions and concerns when deciding on appropriate progression of treatment.
I am really looking forward to working with my new rheumy for the coming future and hope that as one of his patients that he will learn something from me.
links for further info :
Postural Orthostatic Tachychardia Syndrome (POTS) - http://www.dinet.org/pots_an_overview.htm
For people with EDS, the rheumy is the top of the food chain when it comes to our long list of drs and medical professionals we see regularly.
He is the guy who is the EDS expert, the one who understands what EDS is, how it works and how it affects our different body systems...that's when we are lucky enough to finally find a rheumy who specialises in EDS!
The EDS rheumy is the wedding planner of our medical care. He coordinates all the other drs, decides what should and shouldn't happen and pulls all the other drs' tests, work and ideas together to get a full picture of what is going on in the EDS body. He then rolls out orders to the GP (family dr) to refer the eds patient to new specialists if needed, order more tests, start new or change current treatments and keep him up to date with what is going on. He will also contact other specialists working with the eds patient either directly or through the GP to discuss current treatment with the aim to either stop proposed treatment/surgery (an orthopaedic surgeon may think ligament tightening surgery will stop a joint dislocating but a EDS specialist may suspect that it will not with this patient), suggest treatment or avenues of investigation the other specialist hasn't thought of, or simply just to keep uptodate or create a new network with the specialist for future patients.
My previous EDS rheumy was one of the country's (and world's) leading EDS/HMS experts. Professor Howard Bird has made some of the most important discoveries and moved the research and treatment of eds/hms forward massively since he began taking a special interest in the condition in his early career.
His retirement shook the eds/hms community and the proposed closure of the specialist clinic that he had set up in Leeds, UK was feared.
I had been lucky enough to have been a patient of Prof Bird for 1 year before his retirement. Although I had received my diagnosis in 2007 I hadn't received any real treatment so was finally refereed to Prof Bird in December 2009 where I received a thorough assessment. It is here I found out how bad my body was affected, how much my joints had deteriorated due to lack of treatment and how I had developed scoliosis (curvature of the spine) and osteoarthritis of the SI joints (where the spine meets the pelvis.
It was also Prof Bird who noticed the obvious EDS characteristics in my Mum and due to taking such a detailed family history we discovered that both my parents had the EDS gene. My mother very affected, my dad only mildly. My mum has since gone on to receive treatment for pain and physio and is now waiting her initial appointment with my new rheumy.
So back to my new eds rheumy.
I had been given his details before my final appointment with Prof Bird by a fellow member of the Hypermobility Association (HMSA) who recommended him highly. I knew that with Prof Bird's upcoming retirement I would have to find a new rheumy experienced in EDS.
I was told Dr S. was a great dr and Prof B agreed that he would be the best rheumy for me.
My 1st appointment couldn't have gone better. Dr S. and his staff were very welcoming and pleasent and it didnt take long for me to relax and laugh at an unfortunate gramatical error on a recent discharge note with him.
We covered my current EDS issues, mainly my ongoing gastointestinal deteriation and
a new set of symptoms that some drs are suspecting could be indicative of Postural Orthostatic Tachychardia Syndrome (POTS), a form of Dysautonomia that can occur in EDS (see links at bottom for info on POTS)
I was in with Dr S for over an hour! I had to apologise profusely to the lady following me but she didnt mind 'at least he's thorough' she said. That he certainly is.
I then had lots of bloods taken.
I received a copy of the letter Dr S wrote to my gp within days.
He has requested a referral to Prof Aziz in London for my GI issues with a referral to a local GI consultant with knowledge of EDS for long term monitoring.
He has also requested that I have a number of tests done before I see my endocrinologist at the end of January. These are to look for other causes of my dropping blood pressure and raised heart rate that suggest POTS just in case.
Finally Dr S has requested copies of all correspondence from physio, orthopedics, pain clinic, endocrinology, past GI investigation and recent xrays, mri (hips and spine) and an endoscopy I am due to have next week. (To see if there is anything non-EDS causing my upper GI symptoms).
I will not be having regular follow-up appointments with Dr S as I already spend at least 1 day a week at hospital with appointments. Plus Dr S is trying to set up a eds/hms clinic and it is not financially viable to offer regular follow-up appointments to all patients.Instead Dr S said I can phone up and ask for an appointment if I have any serious issues or I can arrange a phone appointment.
I am looking forward to seeing the eds/hms clinic taking off with Dr S as it is very much needed in the North East of England.
Dr S admits he may not have the knowdlege and expertise of Prof Bird, after all he is only young and just starting his work with eds/hms patients, but he is very open and the most important thing is that unlike some drs, he will take the patient's suggestions and concerns when deciding on appropriate progression of treatment.
I am really looking forward to working with my new rheumy for the coming future and hope that as one of his patients that he will learn something from me.
links for further info :
Postural Orthostatic Tachychardia Syndrome (POTS) - http://www.dinet.org/pots_an_overview.htm
Thursday, 2 December 2010
EDS Awareness video. Get involved!
I am currently about to embark on a project I hope will help raise awareness of EDS, not only of the medical side of the condition, but also of the people it affects.
There are many videos on youtube that aim to raise awareness of medical conditions, including EDS. However they tend to either focus on the medical information OR offer a personal insight of someone living with EDS.
I aim to create a film that not only gets the medical information across but also shows the personal effect of the condition on many people, not just myself.
I hope that this film will offer a current and unique insight into the condition that can be shared with family members, friends and collegues. My ultimate aim would be that the film could be used as an awareness tool by EDS/HMS organisations to get across to medical professoinals, social care providers, schools and employers how EDS effects life day-to-day and the emotional wellbeing of the EDSer.
So I want to do the best job I can and to do this I need your help!
One of the biggest hurdles people face when trying to get drs to understand eds is that often the condition is seen as a 'one glove fits all'. That is that a hip joint of one EDSer will look pretty much the same as another EDSer. We know this is so far from the truth and that EDS never looks the same, not only from person to person but even for the same person the condition can change how it looks over time.
Its also a misconception that ALL EDSers have stretchy skin. I for one do not have stretchy skin despite having such severe EDS effects elsewhere.
Finally most EDS awareness information focus on the more common effects (loose joints, stretchy skin etc) but so many of us have serious digestive issues, related conditions such as POTS and crossovers between the different EDS subtypes.
I want to get these things across as much as possible. This film is not about repeating the same information that is already out there but is to dispell myths and start talking about the less common issues.
To help me do this I need photos, video clips, audio clips, quotes, etc.
Can you help?
Here is what I need:
Photos/video clips
*splints/mobility aids/medical devices such as TENS machines,
*GI treatment inparticular feeding tubes,irrigation systems, liquid diets, food intolerance, blending your food for liquid diets, bloating, GI surgery photos (scars, recovery etc)
*EDS skin - stretchy, super stretchy, non-stretchy, bruises, scars (typical eds scars and non-eds typical scaring), nodules, stretchmarks, poor wound healing, stitches/sutres pictures, visible veins/transparent skin/non transparent skin
*joint deformity - from reccurent dislocations, scarring etc
*actual dislocations, subluxations, sprains, other joint/bone injuries
*Spine - curvatures, kyphosis, fusion surgery, braces, flexibilty
*xrays - obvious eds xray abnomality and 'normal looking' xrays.
*baby and young children - floppy baby pics/clips, bum shuffling, late walking, clumsiness, easy bruising, easy injuries.
*fatigue/exhaustion - stuck in bed, looking exhausted, floppy/weak limbs, clips of trying to talk with brain fog etc
I also want to get across that we are still people 1st and EDS 2nd so photos and videos of :
*celebrating milestones - birthdays, weddings, births, graduation etc
*family snaps, holiday snaps, having fun.
*Smiling and happy pictures of old and young.
*Pictures of the emotionally hard days.
*adapting normal situations to eds eg birthday celebrations in hospital, taking the kids to school on your scooter etc
I will also be using audio clips of quotes, thoughts and readings from EDSers rather than just having lots of text to read. For this I need voice recordings or video clips that I can extract the audio from.
Audio needed
*What does EDS mean to you?
*What are your worries about the future/hopes for the future?
*What bad experiences have you had re drs, schooling, general public,
*What gets you through the bad days?
*Quotes, mottos or something someone has said that changed your outlook or is your daily EDS mantra?
I would love to have some audio clips from EDS kids too. Even something simple like 'My legs hurt' or 'I want to play with my friends' etc Also audio clips from kids of EDS parents such as 'I help mum by...' etc
I would also like to have people reading some of the information in the film rather than having lots of text to read. I need people to volunteer to record themselves reading from a script once it is written. Again I want to get across the vast range of people this condition affects so if you have a child who could read a line or two, even a young child who could repeat a few words etc.
Finally if you have a video blog on EDS that you would be willing to let me use clips from that would be great.
This project will take a while to complete but I hope that the time and effort people contribute will be reflected in a film that is unlike any other EDS awareness material currently out there.
If you would like to be involved in anyway please email the project email livingbendy@gmail.com
If you send photos, video clips or audio clips please include your full name, age and location so I can credit you.
If you would like to be part of the script recording please email and I will contact you once the script is ready to be recorded.
Finaly if you have any other ideas please email or comment below.
Email - livingbendy@gmail.com
There are many videos on youtube that aim to raise awareness of medical conditions, including EDS. However they tend to either focus on the medical information OR offer a personal insight of someone living with EDS.
I aim to create a film that not only gets the medical information across but also shows the personal effect of the condition on many people, not just myself.
I hope that this film will offer a current and unique insight into the condition that can be shared with family members, friends and collegues. My ultimate aim would be that the film could be used as an awareness tool by EDS/HMS organisations to get across to medical professoinals, social care providers, schools and employers how EDS effects life day-to-day and the emotional wellbeing of the EDSer.
So I want to do the best job I can and to do this I need your help!
One of the biggest hurdles people face when trying to get drs to understand eds is that often the condition is seen as a 'one glove fits all'. That is that a hip joint of one EDSer will look pretty much the same as another EDSer. We know this is so far from the truth and that EDS never looks the same, not only from person to person but even for the same person the condition can change how it looks over time.
Its also a misconception that ALL EDSers have stretchy skin. I for one do not have stretchy skin despite having such severe EDS effects elsewhere.
Finally most EDS awareness information focus on the more common effects (loose joints, stretchy skin etc) but so many of us have serious digestive issues, related conditions such as POTS and crossovers between the different EDS subtypes.
I want to get these things across as much as possible. This film is not about repeating the same information that is already out there but is to dispell myths and start talking about the less common issues.
To help me do this I need photos, video clips, audio clips, quotes, etc.
Can you help?
Here is what I need:
Photos/video clips
*splints/mobility aids/medical devices such as TENS machines,
*GI treatment inparticular feeding tubes,irrigation systems, liquid diets, food intolerance, blending your food for liquid diets, bloating, GI surgery photos (scars, recovery etc)
*EDS skin - stretchy, super stretchy, non-stretchy, bruises, scars (typical eds scars and non-eds typical scaring), nodules, stretchmarks, poor wound healing, stitches/sutres pictures, visible veins/transparent skin/non transparent skin
*joint deformity - from reccurent dislocations, scarring etc
*actual dislocations, subluxations, sprains, other joint/bone injuries
*Spine - curvatures, kyphosis, fusion surgery, braces, flexibilty
*xrays - obvious eds xray abnomality and 'normal looking' xrays.
*baby and young children - floppy baby pics/clips, bum shuffling, late walking, clumsiness, easy bruising, easy injuries.
*fatigue/exhaustion - stuck in bed, looking exhausted, floppy/weak limbs, clips of trying to talk with brain fog etc
I also want to get across that we are still people 1st and EDS 2nd so photos and videos of :
*celebrating milestones - birthdays, weddings, births, graduation etc
*family snaps, holiday snaps, having fun.
*Smiling and happy pictures of old and young.
*Pictures of the emotionally hard days.
*adapting normal situations to eds eg birthday celebrations in hospital, taking the kids to school on your scooter etc
I will also be using audio clips of quotes, thoughts and readings from EDSers rather than just having lots of text to read. For this I need voice recordings or video clips that I can extract the audio from.
Audio needed
*What does EDS mean to you?
*What are your worries about the future/hopes for the future?
*What bad experiences have you had re drs, schooling, general public,
*What gets you through the bad days?
*Quotes, mottos or something someone has said that changed your outlook or is your daily EDS mantra?
I would love to have some audio clips from EDS kids too. Even something simple like 'My legs hurt' or 'I want to play with my friends' etc Also audio clips from kids of EDS parents such as 'I help mum by...' etc
I would also like to have people reading some of the information in the film rather than having lots of text to read. I need people to volunteer to record themselves reading from a script once it is written. Again I want to get across the vast range of people this condition affects so if you have a child who could read a line or two, even a young child who could repeat a few words etc.
Finally if you have a video blog on EDS that you would be willing to let me use clips from that would be great.
This project will take a while to complete but I hope that the time and effort people contribute will be reflected in a film that is unlike any other EDS awareness material currently out there.
If you would like to be involved in anyway please email the project email livingbendy@gmail.com
If you send photos, video clips or audio clips please include your full name, age and location so I can credit you.
If you would like to be part of the script recording please email and I will contact you once the script is ready to be recorded.
Finaly if you have any other ideas please email or comment below.
Email - livingbendy@gmail.com
Wednesday, 1 December 2010
Deck the halls and all that stuff!
Hi everyone,
First thank you all to everyone who has contacted me to let me know that my blog is helping others to understand EDS/HMS and also offering comfort to fellow bendies.
Its hard sometimes to come on and write about the month I've had but now that I know that it is helping others I have more reason.
So how have things been since October?
Still waiting to be rehoused and currently living in my extremely bare flat having packed everything ready for my proposed move a few weeks ago. Still here and possibly for another few months but loving having very little to tidy or trip over!
I enjoyed a wonderful birthday, my favourite present was the entire works of Shakespeare found in an old 2nd hand book shop from my boyfriend.
So on to the health stuff...
As predicted the winter is hitting hard and its been an interesting few weeks trying to keep up with my EDS.
My physio became very concerned about my hips after they started to subluxate (partially dislocate) repeatedly during the day. An x-ray has shown 'some structural abnormality' but until the official report comes back from the radiographer they won't tell me what exactly is 'abnormal'. There are a few hip issues that are more common in EDS due to the increased friction from the movement in the joint or from the recurrent dislocations/injuries.
I see a specialist physiotherapist in a few days who needs to assess my hips and pelvis so they can refer me to an Orthopaedic surgeon who will then decide if surgery is needed.
The pain in my hips has become very bad and touching my upper pain threshold so I have finally be referred to the pain clinic.
Last week I passed out and fell badly in my kitchen. It was the first time I used my falls alarm and now realise just how essential it is. The nurses got to me quickly and I was sent to hospital for xrays and pain relief. I expected to be sent home that night but my heart and blood pressure weren't behaving and I was kept in overnight.
My heart rate and blood pressure were monitored through the night and in the morning I was told that I could possible have POTS (Postural Orthostatic Tachycardia Syndrome). This is a condition that basically means your body has become allergic to gravity. It affects the Autonomic system which controls heart rate, blood pressure, temperature control and other essential systems. There are various reasons people develop POTS including as a result of a primary condition, in my case EDS.
If the falls continue I will have to be tested for POTS.
Hearing this was not especially great as I know how bad POTS can get and also how it can cause more complications in EDS.
For more information on POTS see the links at the end of the blog.
Generally I feel really rubbish and think this has to be the worst I've been so far with EDS. However I have been through so much worse in the past and know that whatever happens it's how you approach the challenges that determine how they affect you. As usual I am staying positive (although a little harder than usual), and focusing my energy on just keeping safe and warm over the next few weeks.
I hope that you are all having a great snowy week. Please comment and continue to share your EDS stories. If there is anything you would like me to discuss in a future blog please let me know.
Hugs and prayers to everyone
Cx
More info:
What is POTS? - http://www.dinet.org/ -POTS place. info on POTS and other types of Dysautomia.
POTsgirl's video - http://www.youtube.com/watch?v=OvENfW6scZk - great video explaining POTS simply and to the point.
First thank you all to everyone who has contacted me to let me know that my blog is helping others to understand EDS/HMS and also offering comfort to fellow bendies.
Its hard sometimes to come on and write about the month I've had but now that I know that it is helping others I have more reason.
So how have things been since October?
Still waiting to be rehoused and currently living in my extremely bare flat having packed everything ready for my proposed move a few weeks ago. Still here and possibly for another few months but loving having very little to tidy or trip over!
I enjoyed a wonderful birthday, my favourite present was the entire works of Shakespeare found in an old 2nd hand book shop from my boyfriend.
So on to the health stuff...
As predicted the winter is hitting hard and its been an interesting few weeks trying to keep up with my EDS.
My physio became very concerned about my hips after they started to subluxate (partially dislocate) repeatedly during the day. An x-ray has shown 'some structural abnormality' but until the official report comes back from the radiographer they won't tell me what exactly is 'abnormal'. There are a few hip issues that are more common in EDS due to the increased friction from the movement in the joint or from the recurrent dislocations/injuries.
I see a specialist physiotherapist in a few days who needs to assess my hips and pelvis so they can refer me to an Orthopaedic surgeon who will then decide if surgery is needed.
The pain in my hips has become very bad and touching my upper pain threshold so I have finally be referred to the pain clinic.
Last week I passed out and fell badly in my kitchen. It was the first time I used my falls alarm and now realise just how essential it is. The nurses got to me quickly and I was sent to hospital for xrays and pain relief. I expected to be sent home that night but my heart and blood pressure weren't behaving and I was kept in overnight.
My heart rate and blood pressure were monitored through the night and in the morning I was told that I could possible have POTS (Postural Orthostatic Tachycardia Syndrome). This is a condition that basically means your body has become allergic to gravity. It affects the Autonomic system which controls heart rate, blood pressure, temperature control and other essential systems. There are various reasons people develop POTS including as a result of a primary condition, in my case EDS.
If the falls continue I will have to be tested for POTS.
Hearing this was not especially great as I know how bad POTS can get and also how it can cause more complications in EDS.
For more information on POTS see the links at the end of the blog.
Generally I feel really rubbish and think this has to be the worst I've been so far with EDS. However I have been through so much worse in the past and know that whatever happens it's how you approach the challenges that determine how they affect you. As usual I am staying positive (although a little harder than usual), and focusing my energy on just keeping safe and warm over the next few weeks.
I hope that you are all having a great snowy week. Please comment and continue to share your EDS stories. If there is anything you would like me to discuss in a future blog please let me know.
Hugs and prayers to everyone
Cx
More info:
What is POTS? - http://www.dinet.org/ -POTS place. info on POTS and other types of Dysautomia.
POTsgirl's video - http://www.youtube.com/watch?v=OvENfW6scZk - great video explaining POTS simply and to the point.
Thursday, 7 October 2010
Time for a catch-up
It has been quite some time since I last blogged about living a bendy life. Alot of things have happened in the few months that have gone by. Some very positive, some not so positive.
I am in the process of moving to a new home and the usual stress involved with such a huge expereince is having quite an effect. So I thought I would use this as an excuse to come and let you all know whats been going on in the past few months and what the future might have in store for me.
First of all some non-bendy news
I have been on the council housing list for some time slowly climbing my way up to getting my own little wheelchair friendly bungalow. It has taken 7 months to get to the point where I can say that I may have somewhere before Christmas. However this week it's all gone a bit pear shaped.
The housing people have decided that you can either be a full-time wheelchair user or you only use your chair outside so have no need for an accessible home. I use my wheelchair indoors alot now as my mobilty and condition continue to deteriate. However I can still stand and I can still walk around my flat, on some days very well, so am not classed as a full-time chair user. As a result they have decided that I am no longer a priorty for a wheelchiar friendly home. I have been dropped right down to the bottom of the housing list and told it would be at least a year before I am at the top again.
Thankfully God has been working his wonderful ways as usual and an extremely kind property manager has offered to put me at the top of his waiting list for a private rent bungalow in a village just outside of Hartlepool.
I love the village and spend alot of time there at my boyfriend's home so it is perfect. However because life is never that simple it has caused a few issues...
The village comes under Durham County Council so I have to give all the equipment I have from social services back (which includes a bath lift, special perching stools for getting a wash/working in the kitchen, and my 'falls alarm'). I then need to refer myself to Durham social services to be assessed by them who will then decide if I can have similar equipment from them. This could take anything from a couple of months to a year to happen so it means going back to basics in terms of managing day-to-day and also looking for some 2nd hand equipment I can get hold of myself.
Obviously that is a big pain but nothing serious. However there is a chance I may have to give my amazing wheelchair back also and be reassessed by Durham Wheelchair Service. I have been extremely lucky to get the chair and without it I am very limited in where I can go and what I can do. I can't imagine my life without my wheelchair and it's not till now that I realise just how much it has changed my life. I feel quite humbled to realise just how grateful I have been to have it and how lucky I am compared to alot of people with EDS who are still fighting to get wheelchairs.
Like any big moving of home I'm dealing with all the issues of bills to be paid, bonds to be found and the financial and other aspects that are involved. The stress of moving home is said to be at the top of the list and like anyone else I am starting to feel it.
For me, and for other people with EDS, stress works a bit differently.
I'v had a couple of tears like anyone would when it feels like you can't quite climb that huge mountain in front of you (until you have a cuppa and some chocolate and you are ready to take on the world!). However its more than a short temper and a few tears that I am experienceing.
Most people with EDS have cfs/me (chronic fatigue syndrome) and/or fibromyalgia. see the end of this article for links to some great info on what these are
People with CFS/ME and/or fibromylagia experience different effects from stress where stress causes physical symptoms. Usually this is a flare-up of their usual cfs/me and/or fibromyalgia.
For me its the fatigue that is being triggered and as a result I am in that place where it seems I see more of my bed than I do my friends.
Thankfully it's been over 6months since I've had this level of cfs/me flare and again I am reminded of how lucky I have been the past 6 months.
I am in a much better place to manage the exhuastion as I now have a wonderful partner who seems to know better than I do what I need and how to help.
Right now I know that the next few months are going to be tough but I'm ready to take them on and have the right support and mindset to be able to look forward to the challenge.
Now for the bendy stuff...
It's been quite a year not only for my Ehlers Danlos but also for the hypermobility community as a whole.
It has finally been agreed by the amazing drs who specialise in Ehlers Danlos and Hypermobilty syndrome that they are in fact the same condition. Before now it was often the case that someone diagnosed with Ehlers Danlos Syndrome would manage a little better at getting the right treatment and support and have their condition taking seriously by medical professionals. However someone with a diagnosis of Hypermobility Syndrome would often be told that its not a serious condition, 'you are just bendy' and would have to fight, often unsuccesfully, to get even the basic pain treatment.
Now that Hypermobilty Syndrome is recognised as the same condition (but just a difference in label) as Ehlers Danlos Syndrome, it means that hopefully the condition will continue to get recognised and treated effectively.
As a result of this huge milestone I can now officially say I have Ehlers Danlos Syndrome. It might seem that its just a label and means nothing but already I am seeing a difference in how I am being treated by my drs and physiotherapists.
Treatment has moved in a new direction in the past few months for me. Physio is now focussing on pain relief as it seems that building up the muscle around my joints isn't working. My hips have now started to 'turn themselves off' and are rolling inwards alot. This is affecting my walking and standing alot. I am currently having hydrotherapy with my physio. Its doesnt seem to be having any major impact on my muscles or joints in terms of strength or condition but being in the warm pool is helping with the pain.
I have also been trying new pain medication with the focus on neuropathic pain. This is pain caused by recurrent injury damaging the nerves making them constantly fire off pain signals. It's very annoying being in pain when you know that its simply the nerves getting mixed up and there's actually no injury.
Pain medication for this tends to be the same as that for epilepsy. It works by dampening the nervous system. Due to my sensitivity to certain medications and interactions with other treatments it's proving quite difficult to find something that works. I am simply going to keep my fingers crossed that the right combination of medication is there waiting to be discovered.
I recently attended the Hypermobility Syndrome Association residential. This was a chance to meet up with other bendy people and to listen to talks by the wonderful drs who dedicate so much of their time and career on helping us.
One dr, Dr Aziz, specialises in the gastrointestinal problems that occur in people with EDS. It was quite an eye-opener to discover just how serious this part of the condition can be. My GI issues have been quite bad this last year resulting in my bowel giving up and not functioning. As a result I now have to use an irrigation treatment to keep my insides functioning.
It was a bit of a relief to hear that this can be the eventual treatment for some people with EDS so I am not alone. I had chance to speak to Dr Aziz after his talk and he suggested that in the future I may need to adapt this treatment by having a tube through my tummy as the upper bowel stops functioning. He also said that it sounds like there is alot going on inside me that needs looking at properly so I will be getting reffered to his specialist clniic in London. Again all fingers are crossed that its not as bad as it first appears.
The amazing Prof. Bird has retired from Leeds Hospital where he led an amazing team of drs, physios and other staff in managing the care and treatment of alot of people with EDS in the UK. I was lucky enough to be under his care for the past year and it is becuase of his knowledge, expertise and understading that I have moved forward so much with treatment.
I am now awaiting my first appointment with a new rheumatologist in Newcastle who will take over where Prof. Bird left.
As the wnd of the year slowly creeps up on us I am already enjoying wrapping up in layers of thermals and working out when to get my flu jab. I know that winter can be a tough time of year for me and my EDS becuase of the extra issues of temperature control, lower immuninty to colds and viruses and the cfs/me flares that come with burning more energy trying to keep warm. I know from last winter what to expect and already am preparing. I have dug out my thickest socks and hinting for lots of 'warm' birthday gifts.
It has been the usual rollercoaster that you ride with EDS this past few months and while some of the dips might have seemed impossible to get over at the time, my strentgh to cope and my optimism for my future continues to grow.
I know that life with EDS will always be intresting. It will be fun at times and heartbreaking at others but whatever the next 6months brings...
I amd ready!!!
cx
Links:
Simple guide to CFS/ME http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm
Simple guide to Fibromyalgia http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm
I am in the process of moving to a new home and the usual stress involved with such a huge expereince is having quite an effect. So I thought I would use this as an excuse to come and let you all know whats been going on in the past few months and what the future might have in store for me.
First of all some non-bendy news
I have been on the council housing list for some time slowly climbing my way up to getting my own little wheelchair friendly bungalow. It has taken 7 months to get to the point where I can say that I may have somewhere before Christmas. However this week it's all gone a bit pear shaped.
The housing people have decided that you can either be a full-time wheelchair user or you only use your chair outside so have no need for an accessible home. I use my wheelchair indoors alot now as my mobilty and condition continue to deteriate. However I can still stand and I can still walk around my flat, on some days very well, so am not classed as a full-time chair user. As a result they have decided that I am no longer a priorty for a wheelchiar friendly home. I have been dropped right down to the bottom of the housing list and told it would be at least a year before I am at the top again.
Thankfully God has been working his wonderful ways as usual and an extremely kind property manager has offered to put me at the top of his waiting list for a private rent bungalow in a village just outside of Hartlepool.
I love the village and spend alot of time there at my boyfriend's home so it is perfect. However because life is never that simple it has caused a few issues...
The village comes under Durham County Council so I have to give all the equipment I have from social services back (which includes a bath lift, special perching stools for getting a wash/working in the kitchen, and my 'falls alarm'). I then need to refer myself to Durham social services to be assessed by them who will then decide if I can have similar equipment from them. This could take anything from a couple of months to a year to happen so it means going back to basics in terms of managing day-to-day and also looking for some 2nd hand equipment I can get hold of myself.
Obviously that is a big pain but nothing serious. However there is a chance I may have to give my amazing wheelchair back also and be reassessed by Durham Wheelchair Service. I have been extremely lucky to get the chair and without it I am very limited in where I can go and what I can do. I can't imagine my life without my wheelchair and it's not till now that I realise just how much it has changed my life. I feel quite humbled to realise just how grateful I have been to have it and how lucky I am compared to alot of people with EDS who are still fighting to get wheelchairs.
Like any big moving of home I'm dealing with all the issues of bills to be paid, bonds to be found and the financial and other aspects that are involved. The stress of moving home is said to be at the top of the list and like anyone else I am starting to feel it.
For me, and for other people with EDS, stress works a bit differently.
I'v had a couple of tears like anyone would when it feels like you can't quite climb that huge mountain in front of you (until you have a cuppa and some chocolate and you are ready to take on the world!). However its more than a short temper and a few tears that I am experienceing.
Most people with EDS have cfs/me (chronic fatigue syndrome) and/or fibromyalgia. see the end of this article for links to some great info on what these are
People with CFS/ME and/or fibromylagia experience different effects from stress where stress causes physical symptoms. Usually this is a flare-up of their usual cfs/me and/or fibromyalgia.
For me its the fatigue that is being triggered and as a result I am in that place where it seems I see more of my bed than I do my friends.
Thankfully it's been over 6months since I've had this level of cfs/me flare and again I am reminded of how lucky I have been the past 6 months.
I am in a much better place to manage the exhuastion as I now have a wonderful partner who seems to know better than I do what I need and how to help.
Right now I know that the next few months are going to be tough but I'm ready to take them on and have the right support and mindset to be able to look forward to the challenge.
Now for the bendy stuff...
It's been quite a year not only for my Ehlers Danlos but also for the hypermobility community as a whole.
It has finally been agreed by the amazing drs who specialise in Ehlers Danlos and Hypermobilty syndrome that they are in fact the same condition. Before now it was often the case that someone diagnosed with Ehlers Danlos Syndrome would manage a little better at getting the right treatment and support and have their condition taking seriously by medical professionals. However someone with a diagnosis of Hypermobility Syndrome would often be told that its not a serious condition, 'you are just bendy' and would have to fight, often unsuccesfully, to get even the basic pain treatment.
Now that Hypermobilty Syndrome is recognised as the same condition (but just a difference in label) as Ehlers Danlos Syndrome, it means that hopefully the condition will continue to get recognised and treated effectively.
As a result of this huge milestone I can now officially say I have Ehlers Danlos Syndrome. It might seem that its just a label and means nothing but already I am seeing a difference in how I am being treated by my drs and physiotherapists.
Treatment has moved in a new direction in the past few months for me. Physio is now focussing on pain relief as it seems that building up the muscle around my joints isn't working. My hips have now started to 'turn themselves off' and are rolling inwards alot. This is affecting my walking and standing alot. I am currently having hydrotherapy with my physio. Its doesnt seem to be having any major impact on my muscles or joints in terms of strength or condition but being in the warm pool is helping with the pain.
I have also been trying new pain medication with the focus on neuropathic pain. This is pain caused by recurrent injury damaging the nerves making them constantly fire off pain signals. It's very annoying being in pain when you know that its simply the nerves getting mixed up and there's actually no injury.
Pain medication for this tends to be the same as that for epilepsy. It works by dampening the nervous system. Due to my sensitivity to certain medications and interactions with other treatments it's proving quite difficult to find something that works. I am simply going to keep my fingers crossed that the right combination of medication is there waiting to be discovered.
I recently attended the Hypermobility Syndrome Association residential. This was a chance to meet up with other bendy people and to listen to talks by the wonderful drs who dedicate so much of their time and career on helping us.
One dr, Dr Aziz, specialises in the gastrointestinal problems that occur in people with EDS. It was quite an eye-opener to discover just how serious this part of the condition can be. My GI issues have been quite bad this last year resulting in my bowel giving up and not functioning. As a result I now have to use an irrigation treatment to keep my insides functioning.
It was a bit of a relief to hear that this can be the eventual treatment for some people with EDS so I am not alone. I had chance to speak to Dr Aziz after his talk and he suggested that in the future I may need to adapt this treatment by having a tube through my tummy as the upper bowel stops functioning. He also said that it sounds like there is alot going on inside me that needs looking at properly so I will be getting reffered to his specialist clniic in London. Again all fingers are crossed that its not as bad as it first appears.
The amazing Prof. Bird has retired from Leeds Hospital where he led an amazing team of drs, physios and other staff in managing the care and treatment of alot of people with EDS in the UK. I was lucky enough to be under his care for the past year and it is becuase of his knowledge, expertise and understading that I have moved forward so much with treatment.
I am now awaiting my first appointment with a new rheumatologist in Newcastle who will take over where Prof. Bird left.
As the wnd of the year slowly creeps up on us I am already enjoying wrapping up in layers of thermals and working out when to get my flu jab. I know that winter can be a tough time of year for me and my EDS becuase of the extra issues of temperature control, lower immuninty to colds and viruses and the cfs/me flares that come with burning more energy trying to keep warm. I know from last winter what to expect and already am preparing. I have dug out my thickest socks and hinting for lots of 'warm' birthday gifts.
It has been the usual rollercoaster that you ride with EDS this past few months and while some of the dips might have seemed impossible to get over at the time, my strentgh to cope and my optimism for my future continues to grow.
I know that life with EDS will always be intresting. It will be fun at times and heartbreaking at others but whatever the next 6months brings...
I amd ready!!!
cx
Links:
Simple guide to CFS/ME http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm
Simple guide to Fibromyalgia http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm
Monday, 14 June 2010
Coronation Street gets Bendy!
Disabled Actress Cherylee Houston is Coronation Streets first ever full time disabled actress. Cherylee has EDS/HMS and fibromyalgia (like alot of people with eds/hms). And it seems the condition is finally going to be getting more recognised in the mainstream as Cherylee's character 'Izzy' also has the condition!.
The condition is going to be written into the show so I imagine that before long people will be hearing 'my joints dislocate easily' coming from their tv.
This is great news for members of the eds/hms community for many reasons.
First it will hopefully help raise some recognition of how serious and disabling the condition can be for some people. It will also help people with the condition get across to their family and friends how the condition can deteriate and to what level.
My biggest hope is that it helps raise awareness of the condition amongst drs who will finally be able to see that eds/hms doesn't just mean you are extra bendy but that it can result in serious disability.
Some people from some of the eds/hms online communities are worried that becuase Cherylee is a full time wheelchair user that people will think that if you have eds/hms you have to be in a wheelchair and that people will think that if you don't use a wheelchair you can't have the condition. They are worried that it might get the wrong message across and fail to show that the condition affects people very differntly. However I think it's about time that the condition was shown in its more serious form. It gets very tiring seeing the condition played down massively in medical literature, internet information sites and by drs. For me it will make a massive difference to be able to say to people 'I have the same thing as Izzy on Coronation Street' knowing that I then don't have to try explain why I'm not up and about walking around and living a normal life.
There hasn't been much talk on the condition on the show yet other than a brief explanation by Izzy when asked how she came to be in a wheelchair by kirk,
'Its a degenerative thing, its genetic'.
Some people from the bendy community aren't happy with this very basic explanation but in my opinion this is very accurate on how alot of us deal with questions on eds/hms from new people.
When people first ask about my condition and why I am in a wheelchair I usually say something very similar,
'I have a genetic condition that's got worse very quickly'.
Its only if that person sticks around that I will begin to explain the condition more but even then its usually
'my joints dislocate easily and I get very tired very quickly'.
The more detailed explanation only comes if a friendship develops. People might wonder why I, and many others with eds/hms, aren't as vocal about our condition as our blogs portray. For me it's because it's very difficult to explain the condition in enough detail to get the seriousness of it across quick enough so that the other person doesn't switch off.
Also my biggest worry is that I come across as bitter or a moaner about my condition so I tend to play it down alot in real life. It's very easy for people to assume you have more of an issue about your disability if you talk about it more. For me, this blog, facebook and the hmsa forum are the only place where I talk about eds/hms in any detail. New people in my life at the moment are only learning about the condition slowely as they ask more questions over time.
The only worry I have about the storyline of Izzy's eds/hms and fibromyalgia is that she hasn't yet appeared to have any issues with pain or exhaustion. eds/hms in itself leaves you in almost constant pain and with at least moderate fatigue. Fibromyalgia ontop of that would cause even more pain and more serious issues with exhaustion. However so far the character has yet to complain of pain or tiredness and is working full time in the show's 'Knicker Factory'.
I hope that the show's writers use Cherylee's own expereince of the condition to give an accurate portrayal of these main symptoms of the condition, although it wouldn't make much of a show if she slept through most of it!
However it does seem that itv are keen to not downplay the condition given the accurate description of 'Izzy's' eds/hms on the corrie website:
http://www.itv.com/soaps/coronationstreet/characters/f-lcharacters/izzyarmstrong/
I hope that Cherylee's character and storyline on Coronation street will raise much needed awareness about the condition.
Cherylee has also appeared in Emmerdale, Little Britain, The Bill, Casualty and other tv shows.
For more information on Cherylee's acting career and her character on the show see
http://www.itv.com/lifestyle/thismorning/showbiz/cheryleehouston/
The condition is going to be written into the show so I imagine that before long people will be hearing 'my joints dislocate easily' coming from their tv.
This is great news for members of the eds/hms community for many reasons.
First it will hopefully help raise some recognition of how serious and disabling the condition can be for some people. It will also help people with the condition get across to their family and friends how the condition can deteriate and to what level.
My biggest hope is that it helps raise awareness of the condition amongst drs who will finally be able to see that eds/hms doesn't just mean you are extra bendy but that it can result in serious disability.
Some people from some of the eds/hms online communities are worried that becuase Cherylee is a full time wheelchair user that people will think that if you have eds/hms you have to be in a wheelchair and that people will think that if you don't use a wheelchair you can't have the condition. They are worried that it might get the wrong message across and fail to show that the condition affects people very differntly. However I think it's about time that the condition was shown in its more serious form. It gets very tiring seeing the condition played down massively in medical literature, internet information sites and by drs. For me it will make a massive difference to be able to say to people 'I have the same thing as Izzy on Coronation Street' knowing that I then don't have to try explain why I'm not up and about walking around and living a normal life.
There hasn't been much talk on the condition on the show yet other than a brief explanation by Izzy when asked how she came to be in a wheelchair by kirk,
'Its a degenerative thing, its genetic'.
Some people from the bendy community aren't happy with this very basic explanation but in my opinion this is very accurate on how alot of us deal with questions on eds/hms from new people.
When people first ask about my condition and why I am in a wheelchair I usually say something very similar,
'I have a genetic condition that's got worse very quickly'.
Its only if that person sticks around that I will begin to explain the condition more but even then its usually
'my joints dislocate easily and I get very tired very quickly'.
The more detailed explanation only comes if a friendship develops. People might wonder why I, and many others with eds/hms, aren't as vocal about our condition as our blogs portray. For me it's because it's very difficult to explain the condition in enough detail to get the seriousness of it across quick enough so that the other person doesn't switch off.
Also my biggest worry is that I come across as bitter or a moaner about my condition so I tend to play it down alot in real life. It's very easy for people to assume you have more of an issue about your disability if you talk about it more. For me, this blog, facebook and the hmsa forum are the only place where I talk about eds/hms in any detail. New people in my life at the moment are only learning about the condition slowely as they ask more questions over time.
The only worry I have about the storyline of Izzy's eds/hms and fibromyalgia is that she hasn't yet appeared to have any issues with pain or exhaustion. eds/hms in itself leaves you in almost constant pain and with at least moderate fatigue. Fibromyalgia ontop of that would cause even more pain and more serious issues with exhaustion. However so far the character has yet to complain of pain or tiredness and is working full time in the show's 'Knicker Factory'.
I hope that the show's writers use Cherylee's own expereince of the condition to give an accurate portrayal of these main symptoms of the condition, although it wouldn't make much of a show if she slept through most of it!
However it does seem that itv are keen to not downplay the condition given the accurate description of 'Izzy's' eds/hms on the corrie website:
http://www.itv.com/soaps/coronationstreet/characters/f-lcharacters/izzyarmstrong/
I hope that Cherylee's character and storyline on Coronation street will raise much needed awareness about the condition.
Cherylee has also appeared in Emmerdale, Little Britain, The Bill, Casualty and other tv shows.
For more information on Cherylee's acting career and her character on the show see
http://www.itv.com/lifestyle/thismorning/showbiz/cheryleehouston/
Sunday, 13 June 2010
Just a quickie!
Thought I would post a quick one whilst I wait for tiredness to set in so I can go to bed.
The past week as been a tough one energy wise. I've spent most the week in bed and have slept through an entire day twice.
I had planned on watching the all important England game on saturday but after sleeping for most of the day before I was still exhausted by 3pm and decided to have a quick nap. I work up 21 hours hours later, the next day having missed the game altogther.
However I think I've finally caught up and fully recharged. Today took a while to get going (thank God for the comedy channel on sky tv!).
But once I got moving I managed to get a little housework done, had a shower and got to church.
I'm now suffering the after-effects of so much sleep-insomnia! grrr.
But Iv managed to get alot of bloggging done while I wait for my body clock to catch up.
I have to apologise for my previous post. Those who know me well will know I very rarely moan about my condition and certainly not to the extent of explaining in such details the not so good parts of EDS. However rather than delete the post like I usually do when I write something I later regret, I'm going to leave it just in case it helps someone else. A few of my bendy friends have told me they are passing my blog onto their friends and family to help them understand how hms/eds affects them so hopefully that post will help explain the nasty bits.
So from now on I am hopefully back to my normal positive self. No more winging or complaining and focussing on the bad bits.
I expect by the end of the week I will have done something wonderful or experienced something humerous or embarrasing with my hms/eds that I can tell you all about.
Till then, happy bending!
cx
The past week as been a tough one energy wise. I've spent most the week in bed and have slept through an entire day twice.
I had planned on watching the all important England game on saturday but after sleeping for most of the day before I was still exhausted by 3pm and decided to have a quick nap. I work up 21 hours hours later, the next day having missed the game altogther.
However I think I've finally caught up and fully recharged. Today took a while to get going (thank God for the comedy channel on sky tv!).
But once I got moving I managed to get a little housework done, had a shower and got to church.
I'm now suffering the after-effects of so much sleep-insomnia! grrr.
But Iv managed to get alot of bloggging done while I wait for my body clock to catch up.
I have to apologise for my previous post. Those who know me well will know I very rarely moan about my condition and certainly not to the extent of explaining in such details the not so good parts of EDS. However rather than delete the post like I usually do when I write something I later regret, I'm going to leave it just in case it helps someone else. A few of my bendy friends have told me they are passing my blog onto their friends and family to help them understand how hms/eds affects them so hopefully that post will help explain the nasty bits.
So from now on I am hopefully back to my normal positive self. No more winging or complaining and focussing on the bad bits.
I expect by the end of the week I will have done something wonderful or experienced something humerous or embarrasing with my hms/eds that I can tell you all about.
Till then, happy bending!
cx
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