Amazing News

Firstly I want to apologise for this being a very short post. I have not been very well for the last few days and I have been having bouts of ptosis again which means its quite difficult to use a screen for any length of time.

That aside I was cheered up immensely when I received an email from WEGO Health on Friday afternoon whilst stuck in bed. This is what it said

 

Dear Rachel Morris,
Congratulations! Someone nominated you for Best in Show: Blog in the Fourth Annual WEGO Health Activist Awards.

A little birdy had told me a few days before hand that they had nominated me. I was overjoyed but it was a very hard secret to keep. My blog had to be verified etc before they would send me an official nomination email. I don’t think my email account has ever been checked as many times as it has been over the last few days!

You can find my nominee page HERE, please can I ask that you follow the link and just press the endorse button. I need as many followers as possible to endorse my blog. The nomination phase ends December 31st.

The endorsements are important as the people with the highest number of endorsements go through to the final stage. Then a judging panel also chooses people who they want to go forward. So Please endorse me and get as many people as you know who read the blog to endorse me as well!

This link explains all about the WEGO Health Activist Awards also.

Thanks again for taking the time to read, share and comment on my blog. This award nomination is truly amazing! Thank you.

 

Dear “Norms”

Dear “Norms”

Sorry I have addressed you as “Norms” it short for normals as I believe that is what you consider yourself to be? I mean you don’t have any chronic illness or mobility issues, so you consider yourselves to be normal but what exactly is that? It isn’t meant to be derogatory and I know you are trying to be politically correct when you describe me as disabled. It’s just I am at a loss as to what I am supposed to refer to as. Using the term able-bodied puts me at the same disadvantage as calling you norms. So perhaps just for once we are equals. We equally despair of the names we use to refer to each other.

 

Labels for either of us really aren’t helpful and build up feelings of resentment on both sides.

Norms have so many labels for people like me that you don’t consider “normal” such as spaz, cripple, deformed, freak, gimp, invalid, handicapped (for those of you who don’t realise that the times have changed) and the one that is the nom de jour disabled. More examples of the awful words people use to describe us can be found here . All words used to describe me and those of my community have negative implications and are frequently used by norms as a throwaway term of abuse.

I hate the term disabled as it automatically puts me at a disadvantage. For a lot of “norms” it automatically means I am incapable of doing anything for myself or having an equal role in society. Those who think they are being politically correct refer to themselves as able-bodied but my fellow “sickies” and I are considered disabled. 

 There is no name for which we can describe our status without it having negative connotations. From the on-line dictionary “dis” in front of a word originally comes from Latin (who knew? blogging can be quite an educational experience) and is used to turn a word into a negative  e.g. dismissive, disadvantaged, disappointed, disappear,disenfranchised, disbelief and my absolute favourite disabled. 

We really need to work together to remove this stigma attached to people like me and come up with a term that is less negative and more realistic. Until that time though, I would prefer it if you just referred to us by our names instead of our perceived disabilities.

Nothing drives home my difference from you norms than being out and about in public. I have a couple of chronic health conditions that affect my mobility they do not affect my intellect yet  some of you seem to assume it does. That irks me somewhat. I don’t assume things about your intellect just by looking at you. I have to ask who gave you these special powers and why don’t I have them? Why does the sight of a wheelchair send you into such a frenzy of uncomfortableness? Just treat me the same way as you would anyone else. My wheelchair  is just a mode of transport, I don’t need an interpreter so stop talking to the person pushing it instead of me. I just want to be treated like a “norm” why is that so difficult?

This inability to communicate with people like me affects all different norms including those in the medical profession, people who should really know better. Some of my most disappointing and humiliating interactions have been with those in this field. Despite holding a conversation with me moments earlier, as soon as my husband enters the room all of your questions will be directed to him. Which is really stupid as my husband could probably name one or two of the medications I am on but not the other 15. Nor could he tell you what my main difficulties are firstly because they change from day-to-day and secondly I like a clear divide between his role as my husband and that of a carer. Its become so bad of late I have started attending medical appointments alone wherever possible. I have had to change my behaviour to force you into changing yours. Would norms have to go to medical appointments unsupported by their spouses / partners just to be treated like a human being?

There are lots of things that irritate me that norms do without realising the impact of your actions. Believe me I think your motivation comes from a good place on the whole and not out of ignorance. My letter to you is just challenging you to think a bit more about how you treat people like me. I know that the majority of you would never deliberately suppress another human beings rights. All I am asking for is to be treated like an equal and not a lesser being or a thing of pity.

On social media over the last 12 months or so there have been lots of memes posted that picture disabled (what else can I call us?) people as figures of inspiration. In our circles these memes are known as disability porn. I am sure when you post them that you have no idea how most people with a disability react when they see them, most of us spontaneously combust with rage. Let me be clear I have no problem with people trying to raise disability awareness that’s not the issue here. What I have an issue with are the memes designed to show “you” how we have such wonderfully positive attitudes and we never let anything get in our way…..bullshit! There are lots of things that get in my way badly designed ramps, narrow doorways, inconsiderately parked cars and steps, just to name a few. I don’t always have a positive attitude some days like the rest of the human race I get the blues, hell I have even been clinically depressed. So don’t use us as your inspirational memes it dehumanises us and sets us apart from the rest of you. If you are interested there is an excellent talk by Stella Young here, explaining what is wrong with disabled people being used to inspire you.

I am curious to know as well why a different set rules for the use of social media apply to you. When you are sick with a cold / sore throat / chest infection etc you are allowed to post about it for days on end. You are allowed to let everyone know how sick you are. Yet if I post any details about my condition I receive messages saying that I am being negative, it’s depressing you or that my life really can’t be that bad, after all I don’t have to “force” myself into work whilst ill ( you seem to find it easy to forget that I did force myself into work for 18 months before I was medically retired by the company I worked for which at the age of 34 was no easy feat). I got so fed up by these messages from so-called friends I removed you from my social media streams and then set up a page linked to my blog so that I could post there free from criticism.

I have days where I am in pain, feel awful etc but I am not allowed to express myself on social media as you would. You negate my suffering by forcing me to self censor rather than face the backlash. Why is my suffering not as worthy as yours? I am not alone in the disabled community when feeling that we can not be honest when expressing how we feel. We have learnt the hard way that to speak freely means social exclusion. It seems that you norms are only prepared to accept the sanitised version of health problems. As S. Kelley Harrell said

 “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.”

 

I think she hit the nail on the head with that statement. We don’t as a culture seem to be able to understand that many diseases / conditions are treatable but not curable. Which means that many people will live with a progressive/non progressive condition for the rest of their lives. 

Lots of norms casually say to me in that if they became disabled they wouldn’t be able to cope or would kill themselves. They say they don’t know how I do it. I do it because there is no other choice and I don’t feel that my life has become less due to the chronic health conditions I face.

This post is not about us and them, it’s about striving to be equal and not less. I am not anti-norm I used to be one. Until it happened to me I gave no thought about the words I used or the actions I took and how they could detrimentally affect those with a disability. I never gave a second thought about disabled access and how 9 times out of 10 its pretty ill-conceived. I want to be included in the world, not your world our world.

Thanks for reading my letter to you, I hope it inspires you to change the way you think about the 16% of us of working age that are “disabled” in the UK.

Rachel

Birthday’s

When you suffer from chronic ill-health your birthday can be a terribly hard thing to have to deal with. It’s not just the fact that you are another year older and lets face it there is not a lot you can do about that, a birthday is also another reminder of how many years you have been sick for.

After Birthdays I find the New Year  difficult for the same reason. It’s just another reminder that life as you previously knew it has stopped. You can’t keep wishing every New Years Eve that you will get better as each passing year tends to throw even more health challenges you way. It’s another marker of the time you have spent in the prison of chronic illness.

Getting older can be a tough enough thing to deal with in this youth obsessed culture of ours without adding in all that chronic ill-health brings to the table.I feel that I lost the years from 2007 until 2011 when I was finally diagnosed, as they were consumed by my quest for answers regarding my health. I have lived in those years, what can only be described as a lifetimes worth of medical nightmares at the hands of those who were supposed to have my health at the heart of everything they did. They are years that I will never get back.

 

I am angry that I don’t have many happy memories from that time. I did not only have to contend with poor treatment by medical professionals, I also had to endure a hostile working environment and being medically retired in my 30’s when most people’s careers are really starting to take off. Birthdays in that time period are not memorable and I know I faced a deep sense of frustration when that time of year came around.

 

 I will be 41 in a few weeks time and I am already unhappy about it. I enjoyed turning 40, finding increased self-confidence and finding my voice again through this blog. I don’t want turning 41 to change any of that. I have told my friends and family that I am skipping all the birthdays between 40 and 50, I shall be 40 each year until I hit the big 5-0. 

Mine and my husbands birthdays are on consecutive days. Our joint birthday celebrations are incredibly different now to what they once were. Before I became sick birthdays were all about going out with friends, seeing family and generally consuming a lot of alcohol. Since 2007 they have been subdued affairs. Some of my birthdays have been spent completely alone because my husband was unable to get the time off work. With my friends also working and my family living over an hours drive away it meant my birthday passed in an uneventful and lonely way. 

Those birthdays spent entirely alone were some of the most depressing days I have ever faced in the 7 years since I became ill. I had cards and presents from people but to spend your birthday alone is tough. Being chronically sick means you already feel disconnected from the world around you, seeing friends posts on Facebook about the wonderful time they were having on their birthdays only magnified the disconnect. It was no ones fault that those birthdays were spent alone. The world doesn’t stop turning just because its your birthday and other people have to work, have families of their own etc.

We grow up expecting the day of your birthday to be some how different and special. Most people spend their birthdays with their loved ones or celebrate with friends. When illness prevents that from happening it magnifies the monotony of dealing with a chronic health condition. If you can’t escape it for just one day, it makes the passing of another year so very difficult to deal with.

 

Those who don’t struggle with illness would probably never even think about how emotionally charged birthdays can be. They can provide a great deal of forced reflection especially if the day is spent alone. You can become wrapped up in what life was once like and feel a great deal of negativity towards the future. You can find yourself wondering if you will ever improve or if this is the way every birthday will be spent for the rest of time. With this in mind I was determined last years celebrations had to be the one that ended all the negativity I had been feeling about my birthdays.

 

Last year’s birthday celebrations were a bit manic due to it being my mine and my husbands 40th Birthday. On my birthday we drove to see both our families. An hour in the car will exhaust me for days. I decided that if I was going to pay the consequences of trying to be normal, I would have a bloody good time. I did not factor in the migraine that descended upon me whilst we were en route.

 

Luckily I was able to carry on with the day that had been months in the planning. Although the migraine affected my vision for around an hour it wasn’t particularly painful.All my family got together for a meal in a swanky restaurant. I drank champagne and got tipsy. I had the best birthday of my entire life. I felt like I was completely normal and doing what real people do.

The following day we had a joint birthday party, 10-15 people coming to the house and having a good time. Luckily for me a friend helped with the cooking and my husband (despite it being his birthday) did a lot of cleaning. I had to stay in bed due to the fact I developed ptosis and was at the verge of collapse due to the previous days activities. 

The party was an enormous success and we were spoilt by all our friends. Everyone had made a real effort to ensure that they could attend. My husband and I were very grateful for that. It felt like for the first time in a long time we had both had a normal birthday and my illness had not got in the way of us enjoying ourselves.

I paid a high price for being so arrogant in thinking that I could be normal for 48 hours. It sent my health on such a downward spiral that I am only just coming through the other side of it. It is almost 12 months on from those two crazy days and I still look back and smile. They were two of the best days ever. I don’t know if chronic illness has made me cherish those kind of days more because I no longer take them for granted or if they were just two amazing days. The reasons why don’t matter, they made me feel normal and part of the outside world again despite the consequences.

I understand that I was lucky, many others in the chronic illness community would not be able to manage to celebrate in the way we did. Their health would simply not allow them to. I think however you mark the day it should be wherever possible doing something special even if it is just seeing a friend for 30 minutes. Clawing back a little piece normal life for yourself is important just so that a birthday can feel special again rather than just a depressing marker of another year older and another year still sick.

Physiotherapy

Tuesday was my first intensive spinal rehabilitation physiotherapy session. The only word that really scared me, out of that sentence was “intensive”. Having done zero exercise for the past seven years, any sentence with the word intensive in it is prone to do that. Sometimes  getting out of bed in the morning without passing out feels like intensive exercise.

My appointment was due to only be an hour but my medical history took up all of that. Due to being booked in at the end of the day meant that the physiotherapist extended the session. I don’t think that could or would have happened on the NHS. I have always found NHS sessions to be rushed due to the fact the poor physios have to see someone every 15-20 minutes or so. There are long waiting lists and government targets to be met. 

Believe me I am not in favour of a private insurance based system, at the end of the day the physiotherapy unit I am attending is all about making money but it is very client centred. Treat the customer badly and they simply won’t return. I don’t want anyone seeking medical treatment reduced to the status of customer over that of patient. I am luckily currently I am in a position to afford the sessions, I am acutely aware that many people have only the NHS to turn to. 

I was very nervous before the session as I had no idea what it would entail. Before I have been pushed into completing exercises that aggravated my conditions and when I sought out the physiotherapists advice my (4) phone calls were not returned so I gave up. My physiotherapist asked if I had attended physiotherapy previously so I outlined my many experiences and made a point to say that I had given up before due to the lack of support when things had gone wrong. She was quick to provide me with the clinics number and let me know she would return my call asap should I run into difficulties.

The appointment got quite emotional for me as I had to tell her what sports I had done in my youth and what exercise activity I had undertaken before I got ill. Out of no where I was filled with an enormous sense of loss, it was like I had the rug pulled out from under me and as the tears flowed I felt horrendously embarrassed. I will be honest that sense of loss is not something I have come to terms with and I don’t think I ever will. I told her I am 40 years old and I feel like I have the body of an 80-year-old.

Knowing that I would be starting physiotherapy has produced a lot of negative inner voice chatter. It tells me that when I became ill I gave up too easily and that is why my body is in the state it is in now. The rational side of me knows that this is untrue. I had to give up dog walking because of the falls and faints I was suffering with in the middle of nowhere with no access to medical help. My three dogs, clever as they are can not ring for an ambulance or administer CPR. Had someone called an ambulance due to the terrain I was walking on it would have been extremely difficult to get to me. It was just no longer safe for me to take part in this activity and it was unreasonable to expect my husband to be responsible for me and three dogs on these outings. Also a lot of activities were given up because of the intense pain they caused. I think the tears were also a sign of my frustration with it all. 

The physiotherapist was quite up front and explained she had never treated a person with Ehlers Danlos Syndrome before, she had completed a little research before my appointment but was extremely grateful for the information that I provided her with. She had not heard of Dysautonomia so I explained it seems to coexist with EDS (but not with all patients) and that mine had progressed from a diagnosis of Postural Orthostatic Tachycardia Syndrome to Severe Autonomic Dysfunction. She made detailed notes and was visibly shocked when I provided her with a list of my regular medication.

Kate – as I will call the physiotherapist to preserve her anonymity, was very quiet and unassuming. I found it difficult to gauge how we were going to work as a team. After all this is a joint effort, I have to do the exercises but she has to ensure I don’t injure myself and we are moving at a pace that suits me. She reassured me that we would be moving at a very slow pace and that I should not expect to see any improvements for at least 12 weeks. Twelve weeks seems like an eternity, so I have to keep reminding myself slow and steady wins the race. Going too quickly could cause a lot of damage and as I was to find out I struggled with even the most basic exercises.

The sessions are based on Pilates, something I have never done before and although the exercises were hard work I enjoyed the fact I had to concentrate so hard. Kate explained that with Pilates you have to think about the mind-body connection whilst you are performing them. You can’t just flail your limbs around, you have to purposely control them and my god is that difficult for someone with hypermobility. Movement comes easily to me as everything moves way out of a normal range, control is physically and mentally exhausting. The only way I can explain it is to try to work with cooked spaghetti, nothing keeps the desired shape!

The first exercise we started with was The Pilates Rest Position, the link explains beautifully how to achieve the correct position. The most important thing for me with this position was to learn to keep my shoulders relaxed and not hunched. Due to my neck being very weak I have a tendency to unconsciously hunch my shoulders in an effort to keep my head up. As my shoulders have been doing this for a while they even do it when I am lying down.

 It’s also very important to breathe correctly. Thankfully due to a wonderful teacher at primary school who taught music and organised the school choir I know how to breathe from my abdomen rather than my chest. Kate was a little thrown when I started breathing correctly without being asked. She wanted to know where I had learnt it. I explained I had been into singing when I was younger and both my parents had practised yoga when I was a child.

I also have a natural tendency to arch my spine when lying down, with my pelvis tilted back so it was important for me to gauge where my neutral position was. I really enjoyed all this learning although towards the end of the appointment I was panicking about how I would remember all of it. At the end of the session print outs were provided. Due to copyright law I am unable to use them on my blog.

The next exercise Kate taught me was the hip twist – these are all level one exercises here page 8, last exercise ( I am struggling to find good of these exercises as they are so basic and have been adapted from classical Pilates). This exercise was unbelievably difficult. It was very hard to keep my pelvis from rolling out and not just letting my leg flop to the side. To control something when you have zero muscle strength is very tiring and after just 3 repetitions my legs felt like jelly and I was getting concerned that I wouldn’t be able to walk out of the clinic even using my crutches. 

The next exercise was the scissors and you can see that on the link above on page 7 of the same PDF. This again was difficult as when you go to place your foot back on the ground you naturally want to arch your back. Throughout the exercise you have to maintain the neutral position. At the time when I was performing the exercises apart from having a rapid onset of fatigue in my leg muscles I thought how on earth could I possibly be strengthening my core (abdominal) muscles. Let me tell you I can feel it this morning, I am amazed at how much my muscles are letting me know they did a bit of work yesterday.

My homework is to complete these exercises twice a day for the next two weeks. I have to start with two sets of 3 reps for each exercise and if I can increase this to two sets of 5 reps. Minimal stuff really but when you haven’t exercised for years that’s more than enough. I have promised Kate that I will not move beyond the tasks that she has set me so that I don’t go into what she calls a boom bust cycle. Which is where I go mad and do far too much and then collapse.

So far I have really enjoyed the exercises and how intensely I have to concentrate whilst doing them. I have already completed this mornings exercises whilst the dogs were out-of-the-way still sleeping upstairs. I will update you with my progress as and when there is some as it is going to be a slow process.

 

Safety Advice

Please don’t undertake any of these exercises without being properly supervised by a fully qualified instructor or physiotherapist. Do not undertake any exercise programme without first speaking to your doctor.

 

 

“Can you hear me?”

I am getting increasingly frustrated with not being heard.
 
I have a good doctor but there is one symptom of mine that whenever I bring it up is not acknowledged or I feel is disbelieved. Everything else I discuss with him is accepted as part of my condition yet this simple seven letter word is just left hanging in space and I am fed up with going over the same old ground in an effort to be heard and acknowledged.
 
This symptom isn’t anything crazy it is well documented as part of Ehlers Danlos Syndrome and Dysautonomia but it is dismissed out of hand whenever I dare raise the subject. All I am trying to discuss is the bone crushing level of fatigue I suffer from after leaving the house for medical appointments or for any other reason.
 
On leaving the house I am hit with fatigue, its been going on for seven years. A medical appointment can leave me in bed for hours if I am lucky and most of the time days. It’s not just the fatigue that is an issue but also it makes all my symptoms worse. I have increased pain due to the Ehlers Danlos Syndrome and the Dysautonomia makes my autonomic nervous system go screwy. A simple 20 minute appointment can leaving me feeling like I have been run over by a car and I simply don’t bounce back.
 
Most medical professionals that I try to discuss this with either pretend that they haven’t heard me by changing the subject or make me feel like I am exaggerating my symptoms. Let me tell you now I am not making this stuff up! If I could go out everyday I would, I don’t choose to be a prisoner in my own home, my body is making me that. I don’t mind suffering the consequences of the punishment my body will dole out if I am having a good time however medical appointments are not on my list of fun things to do. I would rather spend my energy actually having a life and doing normal things. The only way I can do this is to stick to a strict routine in a controlled environment where my senses are not over stimulated and my frayed autonomic nervous system doesn’t feel like it’s under attack.
 
Also I find that doctors do not calculate into the equation, travelling times to appointments. My doctor wants me to go to the next town to have physiotherapy on the NHS. What he has failed to appreciate is that on a good day that is a 20 minute journey each way with a 30 minute appointment. The physiotherapist will want me to attend once or twice a week. That’s lovely but my body disagrees. If I go just once a week it will take me the rest of the week to recover, going twice a week means my body doesn’t recover and it sends me on a downwards spiral where I become so ill I can’t get out of bed for months. The doctor and the physiotherapist can not understand my sudden deterioration, I then have to end the physiotherapy because I am too sick to attend.
 
How do I know this will happen? Because I have done this before. I tried to play the game and attend the twice weekly physiotherapy sessions. I ended up in a worse condition than I was before I attended. It’s not just the travelling and the appointment that is the issue. If you end up with a physiotherapist that can’t get their heads around the autonomic issues and demands you increase your walking by 10% each week you are on a hiding to nothing. It doesn’t matter how much you tell them about your condition they just don’t hear you. It begins to feel like they think you like using a wheelchair etc. You aren’t then just using energy travelling and attending the appointment you are wasting energy on a person who refuses to listen to you. If they can’t understand the danger with getting someone who has orthostatic intolerance or faints without warning  to increase the length of time they spend walking then what’s the point? I am thoroughly sick of it.
 
When I explained to my doctor that the physiotherapy was making me worse I felt ignored. I was told that I was just going through a rough patch and once through it I could start again. I never emerged from that rough patch and my conditions steadily got worse.
 
Dont get me wrong I like my doctor there are many things that we see eye to eye on and he is my go to guy. He just fails to appreciate the havoc my body creates when made to leave my home. He didn’t get it when I had to have 6 vitamin B12 injections over two weeks, that this would put me in bed for days. I asked if the District Nurse could come and do them I was told that as I was  not strictly housebound that I would have to go to the surgery. I understand that the District Nurses are extremely busy and have many patients to see but this meant for the whole two weeks I rarely left my bed. The nurses I saw at the surgery could see with each session my health was deteriorating and were furious. I couldn’t understand either why I was not being allowed to self inject when I already inject octreotide (a far more dangerous drug that vitamin B12) everyday. It made absolutely no sense. Unfortunately its something my doctor didn’t see so obviously its just a figment of my imagination.It’s incredibly frustrating.
 
This situation with being disbelieved has happened again this week. I needed to ring my gp about increasing my slow release morphine on the days when my back is bad. That was no issue at all. He then asked me how I was, I explained I had seen my neurosurgeon, I read him the MRI report and then told him I had been in bed ever since the appointment (at this point it had been 24 hours and for a lot of those I had slept). I swear to god I could hear his eyes rolling! 
 
I think some of the problem is that when I see someone and it doesn’t matter how ill I am (unless it’s a situation like in June where the temporary catheter was blocked and my bladder was in spasm) I will be bright and breezy because I am genuinely happy to be interacting with another human being other than my husband. I can go weeks without seeing anyone but him and although obviously I love him very much, it’s nice to have some social interaction. The fact that as soon as the interaction finishes I go back to bed or back to sleep is something they don’t see. I really wish they did. 
 
Sometimes I wish I could pull off a dying swan act just so they would appreciate how sick I am but I just can’t, it’s not me. Years of dealing with colleagues and the general public has ingrained in me a “happy face” and a pleasant demeanor when dealing with people. Very few people see the real me, the days when I can’t cope with all the crap that’s being thrown my way and I just want to cry all day everyday. I know through my immense dealings with the medical profession for them to see me like that would mean they would blame it on depression and then it would be an uphill struggle to get any symptom acknowledged as it would all be blamed on that.
 
I am dreading starting my spinal rehabilitation physiotherapy due to the fact I don’t know if the physiotherapist is going to believe me when I tell her I can’t come every week. However at least this time the journey is only 5-10 minutes away depending on whether we get stuck behind a tractor or not. Plus this time I am paying for the treatment myself which means I get a bigger say. I am going to be printing off and taking with me medical papers on Dysautonomia and Ehlers Danlos syndrome for her to read. I hope she does otherwise I will be saying to myself yet again “can you hear me?” when the subject of my fatigue is ignored.

Post MRI follow up appointment

For those of you who follow my blog regularly you will be aware that a few weeks ago I had an appointment with a Neurosurgeon to assess my back. His preliminary diagnosis was that I was suffering from Facet Joint Arthritis and a nerve root compression that would probably need surgical intervention.


After the appointment I was scheduled for an MRI that took place 2 weeks ago. MRI’s don’t bother me but I know a lot of people hate them because of their  claustrophobic nature due to the tube you have to enter with barely any room to move. I also know that another reason people don’t like them is the very loud noise the MRI makes whilst the scan is taking place. Again this doesn’t bother me, I just try to relax and practice some deep slow breathing then I tend to drift off a bit. I did make the mistake this time of opening my eyes whilst I was being scanned and had a bit of a mini panic. After always keeping my eyes closed during the procedure it was a bit of a shock to realise how confined I was. I quickly gained self control and stopped myself thrashing around because I knew moving meant the scan would have to be repeated and I didnt want that.


I am curious to see what the scan has revealed I am convinced it will show nothing and all this will be a tremendous waste of money.

So the day of reckoning is here and I have just got home from the appointment. I am exhausted so I will apologise for this being very brief. The report states:

“MRI spine lumbar / sacral: The L5/S1 disc is flattened and returns decreased signal with associated type II endplate changes. There is a mild disc bulge but no nerve root compression is identified.

At all other levels in the lumbar spine the appearances are unremarkable. The distal cord and the cauda equina appear normal. The paravertebral soft tissues appear normal”

Thankfully its not as bad as we feared the damage is contained to one disc however the disc is completely squished and its contents are leaking out into the surrounding tissue. I have opted to try intensive spinal rehabilitation for a few months to see how that helps things.

I will be reassessed in January and if there is no improvement I will have to consider a spinal fusion. Due to the position of the disc it means going in through my abdomen which is a mine field due to the existing adhesions and the risk of causing more. As I always say EDS is the gift that keeps on giving!

The damage has been caused by early onset arthritis and there is no reversing that. I have to decide is 41 too young to have this surgery with all the associated risks or can I live with this amount of pain being unable to bend without getting locked in that position. Its a difficult situation.

I am utterly exhausted after the appointment so I apologise for the briefness of the post.

 

Dystonia – September is Dystonia Awareness Month

When I first suggested to my friend Bee, (who regular followers will know wrote a guest blog post for me), that I write a piece on Dystonia for Dystonia awareness month, I really thought I understood the condition. You can find Bee’s guest blog post here on Blogger or here on WordPress.

I am not claiming to be a medical expert but I had watched a few documentaries and thought I had my head wrapped around it. I asked Bee to provide me with some good links to sites so that I could complete some research and whilst reading them I realised my so called knowledge was woefully lacking. Yes  I understood that Dystonia at its most basic level is a condition that causes muscle spasms but there is so much more to it than that. I am really pleased that I have educated myself further and learnt more about this little known condition.

Dystonia is the third most diagnosed neurological disorder after Essential Tremor and Parkinson’s Disease yet it remains largely unknown to the general public and medical professionals.This means that many sufferers spend years trying to discover what is happening to them and many are left without a diagnosis. From all the first hand accounts I have read that was the common thread, the sheer length of time it took to obtain the correct diagnosis.

Dystonia is a neurological disorder where the brain sends messages to the muscles that make them contort or spasm uncontrollably. The muscle spasms that affect the sufferers of this condition can be constant or they can come and go.Dystonia can cause an abnormal posture or repetitive movements and can cause sufferers an incredible amount of pain. Like any condition no two patients are the same, so levels of pain varies for each person. Dystonia can affect a person’s speech, eyesight, neck, trunk or limbs. It is a condition that is treatable not curable.

On commencing research for this post I assumed that Dystonia was just one illness however on research I have learnt that simply is not the case and a good source of information on the many different types of the condition can be found at dystonia.org.uk. Having perused a couple of websites for information I think the NHS Choices site is the easiest to understand for absolute beginners which I would class myself as, even though I had heard of the condition.

The most common form of Dystonia according to the NHS Choices website is Focal Dystonia – this is where a single region of the body is affected such as the neck (cervical) or the eyelids (blepharospasms), 90% of sufferers are believed to have this kind of Dystonia. Cervical Dystonia is the kind my guest blogger Bee suffers with and she has kindly agreed to share a bit of her story about how her Dystonia started and how long it took her to be diagnosed.

Bee’s story

Dystonia like other conditions can take years to be diagnosed, which often compounds issues that sufferers are experiencing. One rather significant reason it takes so long to be diagnosed is that many individuals are unaware of what Dystonia is, including General Practitioners and many medical personnel. This often leads to people being undiagnosed or misdiagnosed for many years. As with most medical disorders or diseases treatment in the early stages can be less invasive and more effective. When you are diagnosed late it is as if you are forever playing catch up.

Doctors often tell me that I am a unique and a complex case, which always fills me with joy to know I am so special. My symptoms did not present rapidly or typically like they do in some individuals.Medical opinion states that Dystonia does not progress however in my own case this is not true and from speaking to others with the condition they would refute this also.

Based on my recollection and discussions with my Doctors this is when and how my Dystonia began and progressed. The consensus among the medical professionals that treat me is that it began in my late teens or early twenties. For those of you that read my previous guest blog, I will be 40 soon and was diagnosed at the age of 35.

My symptoms began as chronic headaches, which of course could be attributed to just about anything in the medical world. I felt it was normal for everyone to get headaches on a daily basis. When I was working I would typically develop a headache at approximately 1:00 pm every day. Initially, the opinion was that I was experiencing these headaches due to a cyst in my right sinus.After going to the Ear Nose and Throat Physician and not receiving any definitive news, I figured ok who knows what it is, so it must be fine.

When I was 24 I gave birth to my beautiful son. I had worst neck pain I had ever felt in my life,I attributed it to childbirth and thought no more of it. At the age of 27 I gave birth to my beautiful baby girl. I had extreme headaches, yet again I put this down to childbirth.

Before the age of 27 and I am not sure when I developed a slight tremor in my neck and head. My family were aware of it however I don’t think I truly became aware of it until the age of 27. It was noticed by some but not mentioned by any until later, with one exception. There was an occasion where I was speaking with a man at work and I thought my neck was shaking, at the time I suspected it was because I was nervous or better yet it was in my head and not occurring at all. The next thing I knew the gentleman asked me in a somewhat bold way, “ What is wrong with your neck?” I remembered thinking wow that was sort of rude and I will never forget it as long as I live. I did nothing about it because it wasn’t causing me any pain.


Having spoken to my son about the piece I have written for Rachel, he told me that when he was small he always thought I was shaking my head as if to say “No!” to him. That wasn’t the case it was the Dystonia causing the tremor in my neck muscles making my head move in that way.

When I was 30 we moved to another state and I had quite a bit of anxiety. After much denial I finally went to a Dr. at the urging of my husband. I began taking Lexapro (Escitalopram, an antidepressant), which seemed to help the tremor. Once again I felt the tremor was psychological.

Finally, when I was 35 the headaches would not go away my right arm turned purple and I went to the ER. Additionally I had not felt well overall for a few months, constantly fatigued for no apparent reason. No explanation was ever given by the ER Doctors as to why my arm had gone bright purple and I think I will never know the answer.

I decided at this point that perhaps it would be wise for me to see a Neurologist. I saw a superb neurologist we discussed my headaches I mentioned having a slight tremor. He completed standard neurological testing. Fortunately, he had trained in the area of Dystonia, if not I don’t know that I would have a diagnosis or treatment today. He diagnosed me right away. This took place approximately one month after my ER visit.

In my previous guest blog post I discussed my treatment. As with any chronic illness it is an ongoing ever evolving process. The management of my Dystonia has improved since having the Intrathecal Baclofen pump implanted. I also have Botox injections every 12 weeks to help relax the muscles and prevent spasms.

At present because the pump is a new addition to my management regime my doctors and I are playing with the doses of Baclofen it releases until we work out which dose works best for me.


Before having the Baclofen pump fitted I struggled with moving my head as my neck was continually in spasm. The pump has changed this however on a bad day and unfortunately I never know when they are coming, I can still have problems with moving my neck. Its just with the pump the very bad days are not as common as they were before.


Despite the pump I still suffer with crippling fatigue and I must pace myself during the day. Dystonia has completely changed the way I live my life.


I was greatly relieved when I was given the diagnosis of Dystonia as it explained what was going on with my health. That relief was some what tempered when I began to look into Dystonia and realise that it is treatable but not curable.


That is why it is so important to raise Dystonia’s profile. Had it not been for the fact that I visited a Neurologist that had heard of the condition and had treated others I may still be without a diagnosis. I find this shocking when this is the third most diagnosed Neurological Disorder.



I would like to say an enormous thank you to Bee for providing me with her personal story and helping me put together this blog post to raise awareness of this condition.



Can I ask each and everyone of you who reads this blog post to sign this petition, which is to raise awareness about Dystonia by declaring in the USA September as Dystonia Awareness Month. It just takes a minute or so and even UK residents can sign it, you will just need to verify your email address. Thanks for taking the time to read this post and if you do decide to sign the petition thank you.