Another Set Back

Having been relatively surprised with the care I received from my first really caring GP, it should not have come as a surprise that life in the NHS would not stay all that rosy for long. Having said that, it would have been nice to have had slightly longer feeling all warm inside before another blow was dealt.

It took me a year and a half to see a gastroenterologist – I was not all that upset by the waiting time. I know that the NHS is stretched and things are tight – heck, I was just relieved to even be on a waiting list. I got several tests done, and hey presto I have 3 diagnosis to boot (it seems that us EDS’ers really do earn our stripes) – oesophageal and gut dysmotility and a hernia. Nothing particularly surprising really – I struggle with things like dysphagia, regurgitation, the feeling that my oesophagus just won’t push things down (liquids and solids alike), pain and getting full after mouse sized portions (somebody really needs to make my oesophagus stomach sized… design fault me thinks) pretty much every time I eat. Its frustrating on my good days, and makes me want to rip my hair out on my bad days – but I am all good with pretending to look normal whilst holding regurgitated dinner in my mouth before forcing it down for a second go.

The last appointment I had was results day. The guy was nice enough – pretty pushed for time, so gave me a very quick take on things which didnt give my head much time to process. He decided on a treatment plan, and told me he would see me within 3-4 months time, and even had his nurse book me in an appointment there and then, just to be sure. In the mean time, he gave me a list of things to try before we met again – where he would shift things, look into medication etc in order to get things sorted. All fine(ish) – at least we were going to do something and hopefully work on getting my digestive tract back on track.

Imagine my surprise then when I opened an ominous looking envelope a few days ago that simply stated ‘You’re appointment to see Dr X has been cancelled as he has discharged you from the pathway’. After an initial outburst of profanities and tears of sheer panic for an hour, I pulled myself together enough to ring the hospital and ask what on earth has gone on.

The receptionist then proceeded to explain how Dr X had made a ‘typographical error’ and I should never have been offered a follow up appointment. This would have been easier to believe had he not reiterated several times that I would be seeing him again, made his nurse book me an appointment before leaving the hospital and hadn’t sent me a letter following the last appointment detailing out the treatment plan – including the arranged next appointment. I pointed out these little details to the receptionist who promptly told me ‘If you want to discuss this further, you’ll have to go back to your GP as you are now formally discharged’.

Helpful.

So, having calmed down enough to book in another appointment with my GP for Wednesday, I got home yesterday for a second letter of insanity – this one explaining my discharge – surely someone aught to at least post these the right way round? This letter, if it is at all possible, makes even less sense then the former. So much so that I am pretty sure I could have won the award for Best Confused Face of the Year.

Not only does it mention the good old ‘typographical error’ that was ‘greeted with the impression that she will be reviewed again’, it also says: ‘I outlined in the last paragraph my recommendations on the cumulative strategy that cannot improve her symptoms and I therefore do not feel that it is necessary to follow her up’.

Not only does the last paragraph of the letter he is referring to mention nothing about his recommendations on his cumulative strategy (it actually talks about a referral to Stanmore) – but apparently the strategy was a totally pointless (fictitious) exercise anyhow.

Nothing that he wrote made any sense at all – but I am now left essentially having been labeled as untreatable before anybody even attempted to help. I am left still struggling to swallow enough to get in adequate nutrition, still getting worse as time goes on, only now with extra labels attached. I am painfully aware that even if I manage to get a new referral in place, it will take months, if not years to see anybody – and in that time, I am left to deal with this totally alone.

This is not help. This surely qualifies as a form of torture in some countries? I am fighting every single step of the way to get help for conditions that I have actually been diagnosed with. I naively thought that getting the name was the hard part, but with EDS that battle does not stop. For whatever reason, we have to push and push, and fight and fight just to get appointments or treatment. This continuous battle wears you down and leads to you getting sicker and more exhausted – it is a downward spiral into god knows where.

I am sure most issues are funding related, but a little bit of humanity wouldn’t go amiss. These letters made me feel like I was in the wrong. That I had created false memories, or had made up what I wanted him to say. It would be far more respectful to have received correspondence apologising for the change of plan, with maybe even a suggestion of what to do next, rather then just dropping a bomb shell and running. Humanity costs nothing, but can make the difference between leaving a patient distraught and suicidal, or leaving them able to face another fight and push for the care they need.

For me, I have no idea where this leaves me. Having spent 12 years of my life engaged in an eating disorder, oesophageal dysmotility seems a particularly cruel joke from the universe. I am desperate to get it sorted, but I have no where else to turn. I can not afford private health care, and the so called specialist is now out of reach. I am left to wait – for what I am unsure.

I would give anything for a working NHS right now.

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The Difference of a Good GP

Having been battling with pretty much every GP practice I have been (un)fortunate enough to cross paths with, I had long since given up on the idea that any doctor would ever be of use to me. I have spent years fighting to get help for each of my many conditions, and every time I have come up against wall upon wall. Of late (since the last rant I had about funding), I had point blank stopped going, feeling that I am happier dealing with my health issues alone rather then deal with any more upset and refusal of the help I need. That is, until now!
Having avoided my GP surgery for the last few months, I completely missed any idea that my old useless frustrating GP would be needing some time off for maternity leave. I got a call a few weeks ago asking me to go in to see her – and was petrified it was to try and take away the painkillers that I know they aren’t so happy prescribing. So I took a friend along to help fight my corner (I learnt very quickly that nobody listens to this zebra directly), and very nervously sat in the waiting room waiting for battle to commence. The door opened and to my surprise a totally new face stuck their head out and called my name.

This doctor is maternity leave cover, but she is truly an angel in doctor for. She had called me in purely because she had been reading my notes and realised I’m on a lot of medication, so wanted to get to know my face and discuss how things are going. After a quick blow by blow account, she had decided that a referral to a rheumatologist needed doing strait away (the referral that I have been fighting to get for months/years), stating ‘your young, you shouldn’t be having to deal with this and if the practice have an issue with it, they can come to me!’ And that my other thyroid hormone needed to be checked (up til now my TSH has always been low suggesting hyperthyroid, but t4 was always normal – nobody had gone further and checked my t3) and surprise surprise it has actually come back abnormal! She also told me she was going to go through all of my notes, research things and read my hospital letters – all of which she has now done! She is now chasing advice from an endocrinology team for me! 

I am literally bowled over by how genuinely caring this doctor is. I have never had any support like this before, and the difference it makes is astounding. I have gone from feeling totally hopeless, demoralised and burdensome to feeling like I have a physician I can actually talk to about my health issues. I even mentioned a little about my mental health, and she was absolutely amazing about it. No telling me my pain was obviously caused by that or dismissing it, she actually told me she was very pleased I told her as it’s important to get the right support in place before it gets any worse! That has never happened before.

I feel like I am dreaming it all. I am dreading the day my original GP comes back to work again as I know that I will be right back in the position I have been in, but for now I will make use of this absolute Godsend and go to the doctor when I need help!

Making The Decision To Have Genetic Testing: BRCA 2

As some of you will know, my father had cancer a few years ago. At the time, it was thought to be secondary breast cancer as it was oestrogen receptive, and therefore would have been a terminal diagnosis. Thankfully, it was cancer of the sweat gland (so rare they wanted pictures!), and after treatment he has fully recovered.

Due to a family history of cancer, he underwent genetic testing for the BRCA genes. It is fairly common in a few ethnic minority groups, and we fall into that category. Up until that point, I hadn’t even thought about it. I knew that my Nana’s mum had died of breast cancer, and my aunt had also developed it (tho is in the clear thankfully). It hadn’t crossed my mind that it was genetic, and I had never really considered that possibility.

Both dad and his sister tested positive for the BRCA 2 gene, and this means that my siblings, cousins and I have a 50/50 chance of also carrying the same mutation.

This news carried a number of thoughts, feelings and emotions. The biggest initial reaction for me was fear. Cancer is not a light subject, and having seen my closest friend die of terminal cancer just a couple of years previously, it is particularly fresh in my mind. I was scared of knowing, of not knowing, of having the mutation and of not. I was for my siblings and cousins – I never want to see people suffer through anything like what Riya suffered with ever again. As it is a 1:2 chance, it is statistically unlikely that all 4 of my sibling group will test clear (though I would be ecstatic if that was the case), and that is a horrible thought to have. I know I would feel guilty if I test clear when another sibling does not, and probably upset if I have the gene and the rest don’t.

At the time I found out, I didn’t want to know. I didn’t want to learn of either result as it was easier to put it to the back of my mind. I haven’t really spoken to people about knowing we have a BRCA gene in our family. In general, I am used to keeping medical stuff back from the people around me. So it feels natural to do the same with this – however this is slightly different. This is something that I can choose to learn, or choose to ignore and hope for the best, but somewhere I know it will always be in the back of my mind.

As a family, we struggle to talk about this sort of thing. We have had fleeting conversations one  on one, but we are yet to sit around as a group and discuss what genetic testing means to us. It is a hard topic to bring up, and I often find myself keeping quiet – we are all independent adults with our own lives. As much as I feel that I would benefit from an open discussion, it may well be that the rest want to deal with it in their own ways and in their own time. This has made making a decision for me harder tho. Perhaps I would feel more comfortable doing this at the same time as my siblings rather then being the first to seek an answer.

As I have had time to think about the possibilities, I am beginning to look past my initial reaction. There are benefits to both decisions, and different outcomes after someone tests positive.

The benefit of finding out is a clear cut answer. Either you know that you are in the clear from the gene, and therefor have the same chance of having breast cancer as any other woman does, or you know that you have the gene. Having the BRCA 2 gene gives you a lifetime chance of breast cancer between 45%-85%, and a risk of ovarian cancer between 10%-30% (which increases from the mid 40s). This is a fairly substantial mark up from the average woman (which is about a breast cancer chance of 12.5%).

If you do find out that you have a BRCA gene, then there are options you can choose to take which will either mean cancer is more likely to be detected early, or that will reduce your risk substantially of developing breast cancer in the future. I have been looking into this in relation to breast cancer – so the below relates to this.

The first of these options would be choosing to have increased surveillance. Even if you don’t choose to be tested, this is something suggested to those with a known family history of breast cancer. This would include yearly breast screening from the age of 30 (in contrast to the 3 yearly screening from the age of 50), and keeping vigilant with monthly checking at home. It doesn’t cut the risk of development, but it would give a better chance of catching it early, thus a better chance of survival.

Another option for those with BRCA 2 is ‘chemoprevention’. This means that you would take drugs known to reduce the risk of developing breast cancer for 5 years, and this could potentially drop the risk of development for a number of years after treatment ends quite significantly. The downside to this is that these drugs can cause substantial effects, so you would need to weigh up the risks with your doctor to decide if this is a good option for you.

The last option, and the most drastic is to have an elective double mastectomy. This would mean choosing to have your breast tissue removed, and a reconstruction, either with your mastectomy or at a later date. The benefit of this your risk of developing breast cancer drops hugely – even below those with no gene present in their family. Obviously the downsides are primarily surrounding having surgery, and if your anything like me, the prospect of not having your own breasts anymore!

I can’t help feeling that I am too young to be dealing with this decision. I may be 28, but the potential effect of this decision has a far larger effect then I care to imagine. I am single, and I can’t help thinking that a positive result would create more problems in the dating scene then those that I already face as a chronically ill woman. This is also something that is an issue even if I choose not to find out. I’m not sure ‘Hey, I stand a 50/50 chance of having a breast cancer gene, fancy a date?’ is much of a turn on these days.

Having been reading and researching the above, I am slowly coming to the decision that for me, genetic testing seems like the obvious path. I don’t want to know that I have BRCA2, but if I do have it, it seems more sensible to find out and take action, however unpleasant that process might be. In this day and age, science has achieved some amazing things, and I feel someone obliged to take advantage when my great grandmother could not. I don’t want to be sitting here in 20 years time facing breast cancer, knowing that I could have done something to prevent it.

 

 

The Trouble with a PTSD/POTS Combo

PTSD and POTS are completely different diagnoses, but for me they do seem to feed into each other. With PTSD I suffer periods of dissociation – this can range from a few hours to an entire year (which was pretty horrific). With POTS I suffer from ‘brain fog’ – essentially when I am on my feet for too long, my body can’t pump up enough oxygen to my brain, which leaves me dizzy, spacey and feeling slightly like I’m on another planet.

Both of these symptoms lead to a very similar place, and on occasion I struggle to differentiate between the two.

For those of you who are unaware of dissociation, it is essentially a coping method that most of us use to some extent. In mild forms, its the feeling of arriving at a place without remembering driving there –  your brain gets you there, but you aren’t fully conscious of it. You may be daydreaming and skip a few minutes in a class, or become a bit numb during a crisis. This is all a way of your brain being able to sift information, and enable you to cope with a variety of situations that may otherwise be overwhelming.

IMG_7214Dissociation becomes a problem when it is it its more severe or long lasting forms. With PTSD you develop ‘triggers’. These are situations, words or feelings that can trigger you to dissociate fairly instantaneously. The dissociation may happen if you hear a loud noise, are around people, in difficult situations or your emotions begin to overwhelm you. Almost anything can fling you back into a state of numbness, and its a case of riding the wave and waiting to come back to the real world.

Describing my own dissociation is something I have found difficult to pinpoint. It feels to me very natural, as it is something I have automatically done since I can remember. It is like a switch flips, and all of a sudden I feel fuzzy. I feel that I am not real, and rather weirdly I loose sensation in my body – usually its my hands at first, but this tends to spread to my arms, face and sometimes legs. For me, its the biggest pointer that I am dissociating. When I am in that space, I can function, but I can’t quite communicate properly. I become quiet, and although I can hear people talking to me, I tend to find it hard to understand them or form an answer to speak back to them. It is literally like I am underwater – we all played that game as a child trying to talk to each other in the pool – its almost impossible to understand. That is what its like. When that switch flips, it is also like I am suddenly at a different angle in the world. Its like somebody has picked the real world up and flipped it  a good 30 degrees – everything is just off where it should be, a little bit like stepping into a Dali painting or some Gaudi architecture. Everything inside me is numb – dead. At my worst I felt like I wasn’t real and that continued for a year – it wasn’t fun.

With brain fog, the feelings are slightly different. I become distant. I find that i can’t process information at all – asking me questions when I am on my feet for too long is a futile endeavour. Things like shopping become an issue – I have often gotten home from a supermarket and not remembered what I have bought – it was like a game of surprise shopping every time! I am also more prone to wobbling about, falling and fainting. Often (before I got a mobility scooter) I would end up sat in the middle of the pavement waiting for my body to sort itself out, or ending up sat on the floor in the middle of shops when out – you have to get over the feeling of looking like an idiot if you have POTS, thats a big lesson I’ve learned.

The similarities tho are difficult. The feelings of being spaced out and fuzzy are tricky to tell the difference between, and i often end up feeling sort of numb whichever issue is playing up. With this in mind, unless I know I have been triggered by a particular situation, I tend to play a game of elimination.

I know that with POTS lying down is my best friend for brain fog. If I can’t lie down, then salt is the key. As much as I dislike it, eating a fair amount of salt in one go does seem to get the brain for under control – I now carry around little salt sachets, and have utilised them several times over the last couple of weeks! Wearing compression garments helps (tho they are uncomfortable for me), and I have noticed that I am much more able to be on my feet when those are on without brain fog becoming a major problem.

If those tactics fail, then I know that PTSD is the likely suspect. Usually this means I need to take myself off and find a place to ground myself. Texture is a massively useful tool for me (it differs for everyone), and in particular when I was in group therapy, I got taught to walk barefoot in the grass – teaching myself to focus on finding a sensation is often the key to unlocking the door. Trying to make yourself aware of your surroundings through sight and sound are also really useful tools. For me it can take a huge amount of time depending on the trigger, and the aftereffects can be pretty exhausting. I tend to end up getting emotional when I manage to come back to the real world – for me a lot of dissociation is meshed up with unexpressed feelings of loneliness, fear and sadness. I think my body uses it as a way to keep me safe until I can cope with facing things.

Between the two, I end up fairly confused and pretty exhausted 99% of the time! I am slowly learning to differentiate between the two, but I am sure that POTS makes it much easier for me to slip into dissociation – I am already half way there any time I’m not lying down!

A Letter To Those That Didn’t Step In

When I was a child I was severely bullied. This went on continuously throughout 5 schools, and has had a hugely detrimental effect on my adult life. Through years of therapy and a lot of thinking, the hardest thing to get my head around is that the adults who should have helped failed to step in and protect me. This is a letter I wish I could have written to the teachers, staff and other adults aware of my situation at the time.

Dear staff member,

I am not sure if you remember me from so many years ago, but I will try to remind you now. I was the quiet girl in your class. I was conscientious and polite, but perhaps a little socially awkward. I was the person that sat apart from the class. I was picked last in P.E, and the one that never had a partner in class. I was the child that walked alone at break time, you even made comments that I needed to try harder to socialise. Later on in my school life, I was the one you found hiding in the bathrooms during lessons – what you didn’t know is that I was leaving classes to cut myself up to 20 times a day.

Sometimes you watched me crying. More often then not, your reaction was unacceptable. You made me feel an array of emotions, but non of them positive. You said ‘I’m sure they’re just trying to be your friends’ and to ‘Just ignore them’. You even told me off when another child hit me, and when you found spitballs on the floor after bullies had been throwing them at me all lesson. You made me feel embarrassed that I was being bullied, unworthy because nothing was ever dealt with, and unlovable. You made me feel like the perpetrator. I truly believed for many years that it was my fault – after all, I got bullied throughout my entire schooling career, and the only continuum in 5 schools was me – it must have been my fault.

What you may not be aware of are the aftereffects that bullying can cause. It is something that society as a whole seem unaware of, and even though I grew up with it, I too was unaware. It seemed unbelievable when I was sat in a psychiatrists office years later being told that I ‘clearly showed signs of Post Traumatic Stress Disorder’ alongside severe depression, anorexia and self harm. I had no idea that PTSD was something that could be caused by anything so negligible as name calling and a little ‘rough and tumble’. I was experiencing flashbacks, insomnia, anxiety and dissociating constantly. I was unable to cope with the most basic of activities – I really can’t count the number of times I had to dump a trolly full of food half filled in the supermarket due to a panic attack, and the number of lectures at uni I couldn’t cope with attending. I had whole days that would go by without recollection due to dissociating over the smallest of triggers, and when I finally came back to myself I could spend hours crying uncontrollably for reasons I couldn’t understand. I was a ball of self hatred. During these years my depression was spiralling out of control. I had many years spent with 180 tablets and a bottle of rum stashed away ‘just in case’ tomorrow was as bad as today, and many times stood on the edge of train platforms willing myself to jump off. My eating disorder required hospitalisation, and my self harm continued for 13 years. I also found myself in unhealthy relationships. I had been taught to accept abuse from nursery, and ended up in 2 abusive relationships because I had no idea what a healthy relationship was. Being cared about and loved was alien to me – why would I expect to be respected when I was taught for so long that this isn’t a luxury people give to me. I had no idea what it was to be liked, loved or listened too.

Fast forward to now, and it has taken 12 years of therapy to get to this point. I no longer have an active eating disorder, and no longer self harm unless overly triggered. My PTSD is manageable – I still have triggers directly linked to bullying (crowds, noise, small groups of people I don’t know etc), and I still have a tendency to dissociate. I have also lost large parts of my memory from certain years of my life, tho bit by bit little sections return. Indeed, I often see school photos and have no recollection of anybody in the class – it really is a little off putting!

So, what could you have done to change this? After all, you are only one person right? Wrong. Just one person stepping in could have changed everything. Here are a few points that could really help the next child you deal with.

First off, if you do nothing else, take the time to listen and validate the child crying in front of you. By taking that time to hear whats going on, you can help them to change whats going on inside of them. Through listening you tell a child that their thoughts and feelings are important. You show them that they deserve your time, that they are able to open up and that someone cares. You teach them that they are not alone – and that is something I dearly wish someone had done for me. Through listening you are telling them that they are worthy.

Dont assume ‘just ignore them’ is a sound piece of advice. That single phrase is the thing I remember most, and the words that did far more damage then any bully possibly could have done. By telling a child to ignore the bullies, it makes them feel helpless, weak and inept. It teaches them to hide their emotions (after all its often followed with advice on hiding your reactions as thats what bullies love most), and to stop speaking out. Ignoring absolves the blame from the bullies, and hardly goes into teaching any child respect and compassion towards others. I understand you may be pushed for time, or stressed off your feet, but that phrase makes it crystal clear to the child that you are either uninterested or unable to help them – neither of which are allowable.

Please step in. Whether this means that you discipline the children involved or pass it on to a higher level, make sure something is done. Often both the bullies and the bullied need help, and this will benefit all involved. Making sure people talk about acceptable behaviour and being held accountable for their own actions is important – it teaches children how to act in later life.

Putting support in place for the child that is being bullied is also important. Give them someone to talk to a few times a week, and a space they can go to to feel safe. Make other teachers aware of the dynamic that is cropping up to allow everybody to keep a watchful eye and nip issues in the bud before they escalate. Set up a buddy system and maybe even set up break time activities for those that are dealing with bullying – sometimes another person that understands what your going through can really help you normalise your emotions and begin to talk through whats going on. You can’t force children to get along with each other, but you can certainly try to encourage a tolerant and compassionate environment.

It is also important to realise how much a childs self esteem and confidence can be effected. Setting up sessions that help a child build up their self image could really go a long way to preventing the ill effects often seen later in life.

Never make a child feel like its their fault. Growing up the opinion was that the child must be doing something to deserve it, and as such their was a real stigma if you were unfortunate enough to end up being the one that got picked on. I am slowly realising that I was just a child. I was unable to protect myself, and it was down to the adults to do this for me. No matter how awkward, different or odd the child may be, it is never their fault. By implying this, you set them up for years of self hatred, blame and feelings of inadequacy. I spent so long trying to work out what I had done wrong that I genuinely believed I was the problem. I couldn’t figure that ‘thing’ out but spent many years actively trying to self destruct because I despised myself so much.

Also, remember that bullying isn’t character building – its character destroying. I was a very different child before nursery. By all accounts, I was loud and perhaps a little over confident. This is a far cry from the mouse of a girl I became. I could have been in a very different position to the one I am in now had it not have been from the trauma I suffered at school. Never consider it a positive.

Verbal abuse is just as bad as physical abuse. Name calling may seem easy to ignore as an adult, but you try it when it goes on day-in-day-out for any length of time. For me, verbal bullying has taken years longer then any other sort to heal. A thump or kick fades much quicker then the emotional scars I was left to manage, and the damage cut much deeper. Often its the remarks that people find it hardest to get passed, I know many adults who are still hung up on the topics they were teased about in school, so it really is imperative that you deal with these just as seriously as you would if someone was physically beaten up.

I hope that you do things differently now. I hope that you care for all of your students and support them much more then you did for me. It seems that I was particularly unlucky. I fell through all the cracks, and it is unfortunate that things were not stamped out as they should have been. As the adults in charge, it is up too you to take responsibility and change things.

Sincerely,

Charlotte.

 

 

Learning to Live Again

 

Since my fling with optic neuritis, a lot in my life has changed. I’ve lost a lot, and its been pretty tough trying to accept the things that I can no longer do. With this loss comes depression, and between this and my physical decline it becomes near on impossible to find the joy in life.

Once you have time to adjust to the life you now have, it is surprising what sort of things come into your life to take the place of your previous interests. These are by no means a replacement for your old passions, but they are seedlings that just may grow into the next thing that keeps you going in your darkest hour.

When I lost the ability to dance, I was devastated. My whole life centred around setting myself free in that studio. Every good day, every bad. No matter the weather I was there, ready to put my all into every step. It was the only physical activity I enjoyed, and a never thought I would find a replacement. However, after a rough couple of years, something that feels absolutely amazing has crossed my path again – and that something is horse riding. Yes – horse riding!

img_7059
Claymore

 

I would never have thought about this sort of activity if it wasn’t for a neighbour of mine. She has hyper-mobility, and maintains its the thing that keeps her well. So, after months of her casually mentioning it (and me brushing it off), she finally dragged me along a month ago and persuaded me to book a lesson. I had my reservations, and was worried I wouldn’t even manage to get on the horse, let alone be up to riding it. I wasn’t sure what my POTS would be like, and getting dizzy or faint when on something so high up was a scary idea – but thankfully this hasn’t been an issue. I started off with the idea of just having one lesson, but now it seems that I can’t wait for the next week to swing by so that I can have an hour of freedom where my disability doesn’t get in the way of my enjoyment.

I never thought I would find another physical activity that felt as good as dancing.

As far as the effects of my illnesses on top of a horse, there are a few things that I notice. As far as POTS goes, its actually a pretty good type of exercise if you are ok sitting. Its basically a sitting down type of exercise, and as such, I don’t find myself getting faint, dizzy or spaced out like I do when I’m on my feet. It also gets you really working your leg muscles, and I think this also helps with getting your body circulating your blood back up to your heart much more then other types of exercise seem to.

With Ehlers Danlos Syndrome its a mixed bag. In the long run, the muscles that you work will strengthen hugely, and it really works the insides of your legs, which for me are muscles that really don’t tend to work properly when I walk. In effect, it can eventually balance out and strengthen your leg muscles, which should hopefully stop things subluxing and dislocating as much. It also really strengthens your core – I don’t think I’ve needed my core anywhere near as much as I do to balance on a horse, and in the long run, I think this will be a big positive. This type of exercise constantly moves. Although I work hard, my muscles don’t tend to get as tired as I would expect, and I think this is because I am not needing to hold a fixed position when I’m working. Weights at the gym have never suited me as my muscles fatigue quickly, but because I am constantly engaging different muscles, it seems that no one muscle set gets overworked which is a big plus!

On the other hand, it does have its downsides. For me, the biggest of which is that my hips tend to pop out of place within the first 5 minutes of getting onto a horse, and this is pretty painful! I tend to just keep riding as I know that even if I got off and popped them back into place, the same thing would happen as soon as I got back on. My knees and ankles are also vulnerable to subluxing when riding, and again this does hurt. I am just banking on the idea that it will strengthen them in the long run and so will be worth the initial pain. It is also hard work – I am using muscles that I never knew I had, and engaging my core when I have been largely inactive for the last 2-3 years is no mean feat.

Its not easy to get myself there on a bad pain day, but it never ceases to make me feel better by the end of the lesson! The sense of achievement I get from a good lesson means the world to me, and spending time around such intuitive animals is extremely therapeutic. No matter whats gone on in the week, it all gets left at the door, and 100% of my focus goes into that lesson, and that horse. After all, the minute you get distracted that horse will pick up on it and will stop doing the things you need it to do.

At the end of the lesson, I do end up wobbling about looking a little on the drunk side until my joints pop back in and my muscles acclimatise, but its totally worth it, and no matter how much pain I’m in, I have the biggest grin on my face for hours afterward.

For me, this is something that works. Remember that I’m no doctor, and that it may not be suitable for you – we are all different. However, never rule things out. We can do so much more then we think we can – sticks, wheels or pain, it doesn’t have to stop us finding things we love to do. Never stop searching for the things in life that make you happy. We deserve it as much as anyone else, and EDS/POTS doesn’t mean we can’t find the joy in life.

Be brave, and find that ‘thing’ that makes you forget your ill.

Too Expensive to Treat

This last week has been testing for me.
After finally having a referral sent to the Royal National Orthopaedic Hospital in Stanmore to see their specialist EDS team, I have come up against yet another wall.

Stanmore is one of the top places in the country for patients with Ehlers Danlos Syndrome. They have a team full of specialists who unusually know about, and manage those with EDS. Their books have been closed for years, and finally the doors have been opened for new patients, all of us in dire need of a team that understand and cater to our needs.

Last year, after 6 months of pushing and a formal complaint, I had a referral sent through to Dr Kaz-Kaz at the request of my cardiologist. Unfortunately as my GP surgery had point blank refused to send the referral, by the time it was sent out they too had books too full to take new patients.

I knew that there was a reason behind my referrals not being sent out, but at the time the GP appeared to be doing this out of complacency rather then anything else.

This week I called up Stanmore to find out the status of my referral when they told me it now has to come from a local rheumatologist rather then the surgery – I knew this could be an issue, but wasn’t quite expecting to hear the reasons behind this.

I called up the surgery and explained my situation. The reaction was a flat out no to a local referral, followed swiftly with an angry “Your costing us a lot of money”.

Yes, thats right – never mind the fact that I am a patient with the same rights for help as any other chronically ill person on their books – this entire continual struggle is fuelled by the surgery having me down as either a patient not worthy of help, or a patient who is too costly to bother with.

This type of comment seems totally unacceptable to me. Regardless of the cost behind treatment and referrals, it is not a comment to fling at a patient who is sick. It is not a comment I have ever heard those with other chronic illnesses mentioning – in fact I know several severely disabled people who have fantastic support from their GPs who put in the care that patient needs regardless – because they NEED it. Yet with in the EDS community it seems this is not an uncommon thing.

This illness that effects our every moment has a hugely detrimental effect on us. It steals away our ability to move about safely, it causes great pain and often leads to a point where we are physically unable to work. It steals our ability to eat normally, to sleep normally, to function socially or function at all. It causes heart problems, urinary problems, swallowing problems and severe fatigue. It causes so many issues that we become depressed and anxious. It can effect our lives so much that we literally can not function, and without treatment these effects are life long.

We may not be dying, but living with EDS that is not being managed intrudes our lives just as much as it may with a terminal illness. Every shred of our being is slowly stripped away – and all of this without the support of the medical profession.

Why is it that this is OK? Why are we the illness that everybody ignores and disbelieves? Money should not come into this when a persons life could be totally turned around with the right input – and with most other chronic illnesses this would indeed be the case.

I am exhausted of fighting the system. I have bitten the bullet in the past and gone privately for help, but unfortunately living on benefits doesn’t leave you with a lot to spare, and Stanmore won’t accept a private referral for their services anyhow. I do not need this continual fight on my hands when I am already sick, in pain and exhausted, yet I have no option but to carry on pushing hard if I want this referral badly enough, and I do. I want the chance to function again, to live again and to work again. I want the opportunity to learn how to self manage effectively and understand how to cope with my illness. I want a life.

This is all very difficult to remember when you are continually written off by those that should be supporting your needs. It is a very damaging way to treat a patient, and really does beg the question; Why am I so unworthy?
I feel lucky that I am mentally stronger then ever before. I can just about cope with this – it is healthily getting turned into anger rather then self hatred, but 2 years ago this would have had me on my knees and added fuel to the fire of depression, anxiety and PTSD. It scares me that there are so many other out there dealing with the same comments who may not cope with them so well.
It is not acceptable.