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.

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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

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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.

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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.

The last exercise I have been unable to find a picture of, its called the double leg stretch under the PilatesPro APPI method of pilates. I think the name is wrong on my print out because the legs are involved in a minimal way and the main movement is completed with your arms. To explain it very basically you are still in the resting pilates position.You raise your arms straight up, then you move them towards your head - all whilst keeping your back neutral. You then make a large circle with your arms and bring them back to the starting position of being straight up in the air. Due to my hypermobile shoulder joints we had to adjust this exercise as my shoulder blades were lifting me off the bed and out of a neutral position. I found that by making the circles much smaller it stopped my shoulder blades lifting.

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 do not 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.

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"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. Its 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,  the 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.

Don't 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.

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This too shall pass

This too shall pass

I have been repeating this quote over and over in my head since February when my health first started to decline. Its the one thing that has kept me going through a year which I can honestly say is the toughest one I have faced.

In February I took a tilt table test, this was to look at my body's reaction when I ate or drank because I have postprandial hypotension. Before the test I had to consume 250 ml of lucozade which is just pure sugar and tastes like syrup. Once they had their base line measurements I was then tilted. According to my consultant it was the most impressive one yet. However for some reason the tilt table test triggered off my symptoms in a way no one could have expected or anticipated.

My previous tilt table test in 2011, the one that got me diagnosed with postural orthostatic tachycardia syndrome had left me bed bound for around 5 days. I had been expecting the same with the one in February. This time I was fine for a few days and the wallop! I ate my lunch and then felt my heart rate increase (which is totally normal for me) however after several hours my heart rate had not come down and I was feeling short of breath. Having been in this situation before and knowing that the local hospital would admit me but then do nothing I saw no point in panicking....just yet. I rang my gp the following day and went back on fludrocortisone.

My husband ended up taking a week off from work to look after me. To ease my symptoms I used my oxygen concentrator and ended up staying in bed for well over a week. Since then I have never got back to my pre tilt table level of health.

As those of you who read the blog regularly and follow me on facebook on my The Myasthenia Kid page will know this year I have battled cellulitis 4 times, I have been admitted to hospital because my bladder decided to stop working and I needed to be catheterised. My autonomic nervous system symptoms are still pretty awful. As I write this my head is swimming as due to the heat I am continually feeling faint and dizzy.

Putting all the dysautonomia symptoms aside (I have kind of got used to them horrific as they are) my major battle at the moment is my chronic back pain. Bad backs seem to be a family legacy. Obviously my mum is waiting for major spinal surgery (as written about in Democracy in Action part one and two), my father has also been diagnosed with back problems and needs to have steroid injections but is refusing them at the moment much to the rest of my familys (mum, sister and me) annoyance. My sister suffers with awful back pain and I have been slipping discs in my back from the age of 16.

The pain in my back and the referred pain is so bad that it is depriving me of sleep and making me feel sick. Its not massively high on the pain scale, I wouldn't rate it much above a 5 -6/10. However it is constant there is no relief.

On a good day I have a burning sensation down my left leg and an altered sensation, my leg feels wet and my foot can feel like I am wearing a wet sock. I also suffer with iliac crest pain - it took me years to work out what this pain was. I can push through this and enjoy whatever I happen to be up to. 

I have whats called leg dominant back pain, which means I have very little pain in my back, most of my pain is caused by the nerves that run from my back down my legs.

On a bad day (and unfortunately I am now having more of these than good days) the pain is down both legs, my knees throb. My buttocks and the backs of my legs ache and burn and I have a small amount of back pain. On a very bad day the back pain is awful and any sudden movement will trigger a wave of spasms. I have also noticed that my legs will feel heavy and I feel like it takes a real effort to move them. Keeping a diary of the pain I have also noticed there is a connection between the bad pain days and decreased function of my bladder and bowel.

Nothing has happened so far to make it a medical emergency such as double incontinence or not being able to go completely for hours. Other than that incident at the end of June when my bladder packed up completely and I ended up with acute urinary retention. 

To be honest I have been living with this nerve pain in my leg since 1999 when the original back injury occurred and I never really gave it much consideration until the lyrica (pregablin) I have been prescribed stopped working and my mum found out what a terrible state her back is in. 

My back symptoms ramped up at the end of March and I decided to do what I always do which is ignore them. However the pain has increased to such a point now where I can no longer do so. Due to it being nerve pain my opiate pain killers have zero effect on it. Doubling the lyrica dose at night worked for a month or so but I have now had to double that dose and double my morning dose. 

My back has got so bad that I am unable to do the things that I want to do. Combining the dysautonomia and the back issue I am no longer able to complete the small tasks around the house that I have always done. Things are starting to build up and get on top of me. 

On Friday I realised that I can't do this anymore and had to ask for help. So I now have a cleaning lady who will be coming for 2 hours a week to help me keep things straight. I can't keep on asking my husband to do more and more as its just not fair on him to be working full time looking after me and the dogs and then expecting him to do a massive clean as well. At least this way his days off will be spent spending time with me instead of impersonating Mrs Mop.

I find it hilarious that I am so house proud now, before I got sick I didn't do housework unless someone was coming to visit. I was working full time and we were always going out somewhere cleaning seemed like a real drag. Let me be clear my house was never like something off hoarders but it was dusty and things weren't always put away. Sheets and towels were always washed once a week its just what I call the finer detail was never attended to. 


One of my fondest memories is my mum coming to visit me in my flat and her saying "you don't iron your sheets then?" I replied "when I don't work full time it will be top of my list". I will be honest ironing my bedding has never made it onto my list of things to do even though I no longer work. To me ironing bedding is as pointless as ironing underwear, life is just too short (and obviously I am physically unable to be stood at an ironing board long enough to iron 2 sets of king size bedding!).

As I say my house could never have been described as something out of Hoarders (one of my favourite shows that I like to watch and feel smug. I do know these people have a mental illness before anyone decides to give me a piece of their mind!). It was dusty and well lived in. I had a friend once come over and write clean me on the dust on the TV screen. So I wasn't exactly on top of the cleaning back then. Plus hubby wasn't into it too much either having the old fashioned impression that housework was my job. Thank goodness that outdated attitude of his has now gone. I always find it amazing when I look back and see how much both of us have changed from before I got sick.


 My attitude to cleaning changed when I was at home 24/7 I wasn't prepared to sit in a mess all day everyday. Over the years I have become obsessively house proud which in turn has made hubby more so too. I am guessing some of the reason for my obsessive attitude towards keeping the house tidy was that I didn't think it was fair on hubby to be working all day and coming back to a mess. It was all about what I could contribute to our relationship now I wasn't working. Despite the fact that I would suffer enormously trying to keep on top of things I still felt that being at home all day meant I was responsible for everything in the home. It was never something that my husband demanded or expected it was an unrealistic expectation I placed upon myself. He didn't care if things weren't done as he would sort them out when he had the time. 

I always felt things had to be perfect. I am guessing that controlling my environment was a way of having some control in my life. I cant control my illness or how I will be feeling hour by hour, so by controlling how our home looked soothed me psychologically. Now I can no longer do this it troubles me and makes me feel guilty as I am yet again contributing less to our relationship. My mantra "this too shall pass" is continually on my mind.

Hubby actually told the cleaning lady she won't have much to do. I beg to differ, hubby still doesn't see the finer detail and I am fed up with the battle of getting him to hoover the stair carpet and the bedrooms. At least this way I know that they will be getting done and without argument!

It was a very bittersweet moment when I realised that I could no longer manage the little household chores that I had completed to ensure we kept on top of things. I am sure if we didn't have the three dogs there wouldn't be as much mess but as I could never part from them admitting I needed help was the only solution. It does compound the sense of failure I feel. I am unable to work and now I am unable to keep the house tidy. It makes me ask myself what can I do other than just survive at the moment. I will admit I shed a few tears over this decision.

Its going to be very strange for me having our cleaner in the house doing the jobs I used to do (and more). I am already getting anxious about it, what if the dogs scare her - they can be quite noisy on first meeting people, what if she thinks our house is really dirty, should I clean before she arrives? Its all down to a fear of being judged. She has already text me to reassure me that its ok to ask for help. It doesn't stop the anxiety though, if there is something to worry about I will find it.

So here I am the day before my cleaning lady starts trying to distract myself from the anxiety that I am feeling. I have to create a list of the jobs I want done tomorrow.....which I still haven't started because I feel guilty that I need help.

I know that "This too shall pass" however I am beginning to wonder when this year from hell will end. I have never been one to wish the year away but this year is one that I wish would just go. I want a do over and get back to how things were.

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Trust

"Trust takes years to build, seconds to destroy, forever to repair"

Author unknown

I love this saying because it sums up the issue of trust so eloquently and so much better than I ever could.

Trust is  an intrinsic part of any relationship. In romantic relationships we trust the one we love will be faithful and love us completely despite our flaws. In friendships we trust our friends will keep our confidences. Employers trust their employees to follow the rules. 

The chronically sick have to build up a trusting relationship with those medical professionals that provide their treatment. Without trust in this relationship you end up with a noncompliant patient. 

So many of us within the world of chronic sickness or disease have had our trust in the medical professionals that treat us sorely tested or even shattered. Doctors need to think carefully how they treat their patients as this affects the way that the relationship builds trust. Fail to gain or simply lose the patients trust and the words the medical professional utters will never be believed again.

Due to the way I have been treated in the past by the many doctors I have seen, from gp's to consultants, my trust in medical professionals has been completely destroyed. I have been told one thing to my face and completely different things have been written in my notes. I have been diagnosed with somatoform disorder but not been told about this diagnosis or been given treatment for it. The diagnosis was not made by a psychiatrist but a neurologist overstepping his boundaries. I have also been placed on medication that there was no clinical rationale to back it up other than to keep me quiet.

How is that building a trusting relationship with your patient? I warily trust the two doctors I deal with now but I know at a moments notice that one false move by either of them and I will be back to square one, trusting no one who treats me.

When you lose the trust you have placed on your doctor, it breaks your heart a little bit. You initially held such high hopes when first meeting them in a state of wide eyed innocence. I have yet to meet anyone who has taken the familiar road of chronic illness, who hasn't endured the same kind of treatment I have and unfortunately it's usually at the hands of neurologists. On this journey the next time you meet a new doctor you are just a little bit wary, by the third / fourth doctor you are positively jaded.

When trust is lost you become angry with those who are supposed to be helping you. When you meet the 4th/5th/6th doctor (delete as appropriate) you are positively withdrawn during your meetings. Keeping your answers to simple yes or no's, you've already learnt that an intelligent / informed patient is a threat. Acting either just below or of average intelligence will get you by, it feeds into their superiority complex. ( Apologies to all the good doctors out there as I know there are some.)

My trust in my doctors is being tested at the moment and has been ever since I left hospital in April. There has been what can only be described as a mammoth debacle in my care since then. I like my doctors and I think that they like me, as much as any doctor can like a patient.

In April as those of you who follow my blog know I have been trialling Octreotide which is administered by subcutaneous injections. I am supposed to inject myself daily, 40 minutes before my lunch. However due to repeated bouts of cellulitis and an ongoing issue with my supply of needles and syringes I haven't injected octreotide since the start of June.

What should have been the issue, obtaining the octreotide (because I am using it off label to treat postprandial hypotension) has been an absolute breeze. I have glass vials of the stuff in my fridge waiting to be used. The issue is the method of delivery.

On leaving hospital I was given ample supplies of needles to draw up the drug and needles to inject the drug along with copious amounts of syringes. All went well initially until I started to run out of needles. Then the games commenced.

My drs surgery informed me that they were not able to supply me with the same type of syringes or needles issued by the hospital. Those size needles / syringes were simply not available on the NHS for prescriptions in the community. I explained that I only had a few needles and syringes left and then I wouldn't be able to use the drug and was issued with an emergency supply whilst the prescribing team tried to sort the situation out. This was at the start of May 2014.

A few days later after the emergency supply dried up again I was left with the situation again of having no needles or syringes. I got my consultants secretary, the hospital pharmacy, the prescribing team involved and all that happened was that everyone just blamed everyone else for the situation.

Blame is fine once a situation has been sorted, perhaps you can apportion blame when you look at the root cause of the issue. However everyone blaming everyone else has got me no further. I have 200 drawing up needles, 200 injecting needles and ten syringes and its now July 2014. 

I need to start taking the octreotide again the postprandial hypotension is wiping hours out of my day. After my evening meal, an hour later I am in such a deep sleep I can not be roused for several hours. It means that I am very rarely actually spending an evening with my husband.

Octreotide comes with side effects that after a few weeks rapidly decline. However if I only have ten syringes what's the point of putting up with them if after ten days I will have to stop taking the drug again. It seems to be an exercise in futility.

I am in a very difficult situation. I am within my rights to make a formal complaint about both my gp and my hospital consultant for the way this has been totally mismanaged from the start. Thank goodness I am not diabetic because with the follow up care I have recieved I would be dead by now.

Complaining is difficult due to the fact that my gp is the first doctor who has believed me when I inform him of my problems. It is the same one that came and saw me when my bladder decided to go on strike and instead of getting me carted off to hospital ( a place I hate ) got the district nurse to insert a catheter. He knows what EDS is and he knows what PoTs is. My hospital consultant is the one that gave me the tilt table test which proved I wasn't the basket case I was being made out to be by the neurology department of the same hospital. I have a good relationship with him ( or I thought I did as I am yet to hear from him since April, no follow up appointment to find out how I am doing).

Making a complaint about either of them could land me in the position where I have no one to treat me or who believes in my conditions. You heard how well I got on in A & E recently. What the hell do I do?

I have an appointment with my gp on 30th July where I will be bringing up the stupid situation I am in where I have the drug but no way of administering it. I will also be bringing up my long standing issue with my back and I will be refusing to leave until both situations are resolved or have more than a casual "I will sort it out".

My trust in doctors is being tested yet again. It won't take much to shatter it. I wish medical professionals realised that destroying a patients trust means it colours every future doctor patient realtionship.

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Something different my first ever Guest Blogger - Bee

Please extend a very warm welcome to my first ever guest blogger. Bee has only been following my blog a very short time on my wordpress site www.themyastheniakid.com ( I also blog on blogger www.themyastheniakid.blogspot.co.uk).

I "met" Bee through the comments she regularly writes on my blog posts. Always thoughtful and kind I began to really look forward to what Bee had to say about my latest post. A few days ago I asked Bee if she would do me the honour of being my very first guest blogger and to my delight she agreed.

I have been thinking about having guest bloggers on my site for a while now but other than my family and friends there had been no one to ask. Bee's comments always made me smile and it struck me that she would enjoy the opportunity to share a little piece of her story on my blog.

Bee also suffers with an invisible illness, its called Dystonia. I wont tell you too much about it as I don't want to spoil what Bee has written.

So in her own words I will hand you over to Bee.

Bee's first Blog Post:

Hi,

I am Bee, which is my nickname. I am a 39 year old,wife, Mother of a 12 year old daughter and 15 year old son. I am quickly encroaching on 40 years old,  which my son loves to remind me of as often as possible. 

I was diagnosed with a Neurological Movement Disorder, Cervical Dystonia also known as Spasmodic Torticollis in October of 2009. 

I had headaches for approximately 10 years, before I was finally prompted to go to a neurologist in 2009. Fortunately the neurologist I saw had trained in the area of Dystonia. I was so fortunate to see him because it often goes undiagnosed or is misdiagnosed. He was wonderful in every sense of the word. I will always be grateful for his kindness, professionalism, and collaborative approach to my care. I was relieved to know why I had headaches but I did not know what was in store for me in the upcoming years.

The definition of Dystonia provided by the Dystonia Medical Research Foundation: 

Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may “overflow” into adjacent muscles. Dystonia is classified by: 1. clinical characteristics (including age of onset, body distribution, nature of the symptoms, and associated features such as additional movement disorders or neurological symptoms) and 2. Cause (which includes changes or damage to the nervous system and inheritance). Doctors use these classifications to guide diagnosis and treatment.

We know where mine is located in my body but we don't know the age of onset, or the etiology. I have had genetic testing but it didn’t reveal any insight.

I would like to share a little bit about my treatment and how it has impacted my life, as well as, my family’s. Hopefully I can provide you with a part of my journey without boring you to tears. First and foremost, I realize that I am fortunate because I know many others suffer far more than I do.

Of course I have been told that I am a complex case and not the standard kind. That pretty much describes me in general, so that works out perfectly. I do not twist or tilt to a particular side like many people with Dystonia do. I am more or less in somewhat of a stuck position. So to many I don’t appear sick, it is another “invisible illness”.

So onwards to the very thrilling aspects of my treatment that have taken place over the last few years. I began with oral medication, which did not work well with for me. I was so tired and impacted by the side effects. I moved on to Botox injections, not for vanity or cosmetic purposes. Botox is a toxin, which paralyzes the muscles, it comes from the Clostridium Botulinum bacterium .  

I began with 100 units of botox (given to me via injections). I gradually moved up to 200 units and not forgetting to mention I still remain on oral medications. 

I often hope I am trading one treatment for another. I have been strongly mistaken in ever thinking one treatment would replace another or that one treatment would magically be the cure. Dystonia is an incurable condition, Drs like to call this a "treatable condition". 

The last time I moved the part of my body affected by Dystonia, it was almost two years ago. 

Since that point my treatment has changed quite significantly. The amount of botox I receive began to be steadily increased. I now receive 400 units of botox. Just to put that in perspective when people get botox for frown lines etc. the dosage is typically somewhere around 10- 20 units. 

During this time frame I also began taking the oral medication Baclofen, which is a muscle relaxant. I am now jumping forwards in time... Because my Baclofen was continuing to be increased orally and the side effects impacted my daily functioning, I have since had the Intrathecal Baclofen Pump implanted. 

I have a device the size of a hockey puck in my stomach and a catheter in my spine that administers medication continuously as well as additional boluses in 4 hour intervals. The side effects are supposed to be decreased because the dosage is much lower due to the way the drug is administered. At this point adjusting the dosage is ongoing as we try to reach the right dose for me.  

Additionally I am now up to 500 units of botox for Dystonia as well as Migraines. My Migraines were initially diagnosed as chronic daily headaches. It has been almost 8 weeks since I had the Baclofen Pump surgery. So as I said earlier I continue to add treatments in the of hope of limiting other medications. As of yet this has not happened, we will see what the future holds.

Now that I have entertained you beyond words with my abridged medical treatment I will provide you with a quick summary of the impact on my family!

As a mom I feel much guilt, as there are many negative ways my condition has impacted my children. They have had to live through the side effects of numerous medication changes. 

When our daughter was about 9 years old she saw a commercial for a medication that was the worst one I was ever on. She held her fingers up in an X, I quickly knew that medication changes were not a joyride for myself or my family. 

I could tell you many more stories about medications but I will spare you the excitement. 

I worked at the beginning of my diagnosis but was so tired from the pain and the medications I was on. I had to stop working, which I have found very difficult to deal with emotionally.

Fortunately I have a rather angelic husband, that not only loves me but also tolerates my craziness. He does the things with my children that I can no longer do. I often ask my children if they remember the many things I used to do with them. 

On a positive and very proud note our children have grown up to be very compassionate and understanding. They are always thinking about whether or not it is in my best interest to attend activities, based on my comfort, the length of time etc. They are helpful, loving and kind. Of course I still feel guilty but believe that Dystonia has had a role in shaping their wonderful personalities.

I could continue to go on and on about my experiences. Perhaps I will be featured another time on Rach’s blog.

Thank you so much for the opportunity. :)

Best Wishes to everyone.

Many thanks go to Bee who was kind enough to share her story with us. I have added some links in case anyone wants to understand in greater detail some of the issues discussed by Bee in her blog post.

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Do you work?

"Do you work?"

It is a question I get asked frequently, usually by medical staff. I feel embarrassed when I have to answer, admitting to not working these days . It leaves you feeling that you are in some way a scrounger dependant on others for your means to survive.

The truth is I would love to work and I think its great that medical staff see past the wheelchair and my long list of medical complaints. Disabled people are more than capable of being part of the work force, however the issue is not that disabled people are lazy or unwilling to be "productive" members of society, there are usually a whole catalogue of reasons why they find themselves without gainful employment.

I was recently asked this question by an old school friend that I hadn't seen for over 20 years. It is a natural question when you are chatting to someone when you first meet them or haven't seen them for a long time. I hate this question because it automatically put me on the defensive. I feel like I have to justify the reasons why I can't work and excuse my inability to be a normal human being. That wasn't implied by the questioner but it is how the question made me feel.

I understand why medical staff ask the question, they want to know if there are environmental factors that could be at play contributing to your condition. They want to assess what it is that you are capable of doing. However when asked I feel like I am being asked to justify my very existence.

You see I would love to work, I worked from the age of 16 to 34.  I was very good at my job and my colleagues will still contact me to ask my advice about things even though I haven't worked since 31st May 2008. I had never had a disciplinary, my capability to do my role had never been questioned, I never imagined that at any point during my life other than retirement that I wouldn't work ( unless I had a winning lottery ticket ). I never thought that I would become so sick that I wouldn't ever be able to go to work again. I never imagined that if I did become sick that my employers would be unwilling to make the reasonable adjustments required by law under the 2010 Equalities Act or when I was working the Disability Discrimination Act. I never in my wildest dreams believed that any of this could happen to me.

You may read my blog and think she sounds like an intelligent person, her blog posts must take her ages to write etc etc. I would agree that yes I am above average intelligence and my blog posts are time consuming and exhausting. Hence why I only publish twice a week, I would love to have the ability to write full time. However I am only viable for a few hours each morning, after that I struggle with any task that demands mental acuity or physical expenditure. My days follow the same pattern 365 days of the year.

I get up each morning riddled with pain despite still being inside my 12 hour slow release dose of morphine. Pain wakes me up every morning and is much more reliable than any alarm clock. Just because I don't squeal, shout or cry on waking doesn't mean I am not in pain, it just means I am used to it. I sleep on a memory foam mattress topper, yet I still wake every day feeling like I have slept on a concrete slab. If I wake up lying on my side the pain will be from my face down, whatever part of my body has been in contact with the bed will hurt. If I have been lying on my back the pain is from the back of my head down. The first thing I do every morning is take 5ml / 10mg of oramorph to dull ( notice I say dull because to actually get rid of the pain completely I would have to take such a large dose I wouldn't be able to function) the pain until its time for my next lot of pain killers.

I make my way downstairs and put the kettle on for what will be the first of many cups of tea that day. I have polydipsia - excessive thirst which is part of my dysautonomia symptoms, this is day and night (at night I will go through 3 litres of fluids). This also means a lot of bathroom breaks because I do not hold on to what I drink regardless of the sodium and florinef tablets I take. I also have my first cigarette of the day ( I know thats a hanging offence and I know its not healthy). By the time I sit down for my first cigarette of the day my orthostatic intolerance kicks in and I will have the first of many pre-syncopal episodes of the day (in varying degrees of severity) some days I am lucky and my vision will just grey out and I will feel shitty, other times I am left working out very quickly which direction it would be best to faint in (for the least amount of physical damage). For the casual observer you wouldn't notice this because if you were talking to me I would just carry on the conversation, not because I am some sort of hardcore hero but because I am so used to it now I try to prevent it being a big issue ( that works fine until I actually do black out / faint).

Once my cup of tea is made I then make my way to the sofa and this is where I will stay until it is physically safe for me to climb the stairs again to have a shower (helped by my husband). This will take several hours to achieve, again to the casual observer nothing appears to be wrong with me other than the fact I look like a lazy bitch. You see my illness gives you no outward signs, no clue as to what is going on inside. Its easy to make assumptions by just looking at me.

During my enforced sofa time, depending on how mentally with it I feel I will check my emails, facebook, twitter and if I am ok I will attempt to write one of the two blog posts I write every week. Some weeks I don't manage to write two, thankfully I have used the good weeks to put together some what I call back pocket posts, ones I use in an emergency. However my emergency posts are not always fully formed and need some work done to them, in those situations I usually just post my apologies.

If I am not up to writing then I will watch TV, due to my enforced early bedtimes - anything from 4pm onwards I have to record a lot of programmes that I follow in the evenings. I haven't seen evening TV for so long I couldn't tell you what happens after the 6pm news on BBC1. I follow a lot of TV far much more than I will ever admit to. Somedays I can't even do that because my memory is so poor I can't remember what happened in the previous 15 minutes and the plotline is making no sense.

If I manage a shower and there are many days that I don't, I need to have an hour or so of rest to get over the physical exertion. Things have changed dramatically from my pre sick days. I used to wash and blow dry my hair everyday, I wore make up - even on my days off. I never left the house without make up. I wore nice clothes and believed that sweat pants were for gym bunnies or obese people that were just kidding themselves. Its easy to be judgemental when you're not in others positions. My favourite piece of clothing now is a pair of yoga pants and a sweat top or pajamas. I used to be well put together and took pride in my appearance. All of that takes far too much energy these days and the energy I do have I want to use for other things. I still make an effort for special occasions and doctor appointments ( sometimes doctor appointments are special occasions as it maybe the first time I have been out of the house in months). 

I have learnt that you need to be properly dressed and wearing a full face of makeup for doctors appointments otherwise you get accused of being depressed. The fact that the journey to see them is going to take you days to get over, even though it was only a 15 minute car ride is neither here nor there to them. Anyone who doesn't take pride in their appearance must be suffering from depression after all thats what they learnt at med school. I also learnt not to wear a lot of black to these appointments, black is one of my favourite colours with very pale skin and blonde hair black is dramatic on me especially if I go for bright red lips. Unfortunately doctors aren't that fashion forward and all black is another indicator that your sickness is all in the mind. Anyway I digress as usual!

As the day ticks on by the less and less energy I have. I struggle to keep myself upright even in a seated position. Due to Ehlers Danlos Syndrome affecting my spine as the day progresses my spine takes on the shape of a letter C and my neck starts to struggle to hold my head up, it lolls towards the top of my back. This is not comfortable but as I try to stay out of bed as much as I can I will lie on the sofa or sit propped up by cushions. I have difficulty thinking clearly and have difficulty finding the right words. I know the word I want yet it cant seem to make its way from my brain to my mouth. It hasn't been just once that on my personal facebook page I have asked friends and family for the word I am looking for. To know that you are an intelligent person and to fail to be able to articulate is soul destroying. It is one of the symptoms I find hardest to deal with.

My sight deteriorates throughout the day as well with varying amounts of double vision or ptosis (which can affect one or both eyes). Using computer screens becomes more and more difficult. Dependent on what level my health is at on a particular day I may have to use my oxygen concentrator to supplement the amount of oxygen circulating in my system.

Bed can never come soon enough and it's not uncommon for me to be so exhausted by the mornings activities that I need to sleep for an hour or so in the afternoon.

I realise now I haven't even mentioned the other ways in which my dysautonomia can impact my day. I never have a day when my postural orthostatic tachycardia syndrome does not play a part. On a bad day every change in posture (which can mean as little as turning over in bed or moving my head) is accompanied by the feeling of my heart racing to the point it seems as if it will burst out of my chest. I become short of breath and can feel at times that I am having a heart attack such is the severity of the pain in my chest. Again to the casual observer it would only be on a very rare occasion that you may notice that there is wrong with me. I am the master of disguise and to admit to you that there is a problem means that you are in my inner circle, the only people I tell the truth to when you ask me how I am.

Next time when someone asks me "do you work" I am going to answer "Yes, I am a professional sick person. Such is the level of my expertise you will never realise the sheer shittiness of the hand I have been dealt!"

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