I Officially Don’t Have Any Screws Loose!

This time last year, I was desperately fundraising in an attempt to get neurosurgery that all the NHS neurosurgeons had expressly told me not to get.
I was dealing with the most severe pain I had ever experienced on a daily basis, continuing to deteriorate neurologically loosing more and more function each day, and I was getting to the point where I was impersonating Dory from finding Nemo!

When I look back at where I was a year ago, it is with a combination of immense happiness to be in the position I am in now, yet with an overwhelming sense of sadness that I have watched so many years of my life tumble away with absolutely no appropriate medical care that should have been there to stop it happening.

I have avoided writing about my experience of going through surgery up until now, but with being a year post surgery, and some time to reflect, I feel like it would be a good time to start writing once again. Perhaps the next few posts may enable someone else fighting this beast to trust their intuition before it gets to the point where longterm damage is a real possibility.

A couple of weeks ago, I was officially discharged from my neurosurgeon. I had a scan completed, and this is showing a small section of bone grown around my fusion. I was also told that I officially have ‘no loose screws’ – something I need framed for the next doctor I meet who tries to tell me its all in my head!

I wish I could tell you I was jumping from the rooftops in joy – part of me is, but the other part of me is acutely aware of the overhanging neurological symptoms that are still part of my day to day life. I knew surgery would not fix everything, and I am so grateful to be in a position where things won’t deteriorate further, but had this surgery have been done sooner, I would not be in the position I am now in. I would not have had this much neurological damage to heal from.

Leading up to this follow-up I was terrified. I knew that things were much better than they had been, but I also knew that I still have so many symptoms that are still proving problematic. Before surgery, my surgeon had told me it could take up to a year for my brainstem to heal, so this elusive one year deadline felt terrifying when I knew that I still had so many issues leftover. My head was filled with worries of whether this would be as far as my recovery would get. Whether the damage was too far gone to recover from.

What he hadn’t told me at the time was that he hadn’t actually expected me to get any better at all – owing to the level of instability, and severity of the chiari, he had only expected to halt the progression of symptoms. I am very pleased to say he has managed to do much more than that.

Today’s life is very different to life before surgery. The improvements to my memory and ability to converse and communicate are overwhelmingly positive. I no longer feel dissociated on a constant basis, and it literally feels like the world is in colour again after years of it being in black and white. As soon as I woke up from that surgery, it felt like I had woken up for the first time in 5 years. I was no longer stuck in a fuzzy world where nothing felt real. I was present for the first time in so long that I have no real inkling of when that feeling first started. I am no longer dealing with periods of paralysis in my lower legs, and my swallowing has improved immensely. My levels of pain day-to-day are so much more manageable, and the periods of time in which I pass out purely because I sit up are thankfully largely gone (something that was happening too many times a day to count). I am gradually experiencing less sudden electric jolts through my body, less randomly thrown items across rooms, and far less vertigo upon moving my head. My migraines have gone from 2-3 a week to just 2-3 a month! So much has changed that I can’t even begin to write it all down.

However there are still many symptoms overhanging – and although some have started to improve, I don’t know how many will disappear completely. I still experience balance issues, loss of sensation and periods of ‘forgetting’ to breathe. I still have weakness down one side of my body (hemiparesis), and still experience some periods of my body jolting as if plugged into the mains. I still have issues with my grip, and my fine motor skills are clumsy and uncoordinated, and my memory is still sketchy to say the least. I am still experiencing bedwetting at random, and periods where I don’t even realise I have had an accident whilst wide awake until I touch my trousers and realise they’re wet (thankfully not too often) owing to loss of sensation that is still present. My core muscles are almost non-existent, and because it took 5 years to get treatment (for most of which I was unable to keep active), I have lost more strength than I could ever have imagined throughout my body. My vision is still variable – I still get times of double vision and times where it seems like someone has turned the lights off for no apparent reason, and my proprioceptive difficulties still leads me to walk into door frames and walls on a regular basis. These are just a handful of leftover symptoms – but there are many many more.

On top of the leftover issues, I am only now starting to realise the true extent of the trauma left over from not only undergoing such a massive surgery, but also from having to fight tooth and nail to get surgery that has allowed me to stay alive. Even I wasn’t aware of how dangerous my situation had become, and it was only after being shown a video of my skull literally sliding about freely upon my spine taken during surgery that I really began to understand. The physio, who had been briefed by the team, sat me down in the first appointment I had with her, and asked if I realised how dangerous that was. She told me I was extremely lucky not to have already died, or at best ended up completely paralysed needing a ventilator to survive.

For 5 long years, almost every neurologist and neurosurgeon I had seen on the NHS had told me that there was absolutely nothing wrong with me. That every symptom was psychosomatic, and that I was essentially just making it all up due to mental illness. Not once was a proper neurological assessment carried out – even though I had been referred due to vertigo, loss of sensation and hemiparesis. All of which are bog standard symptoms for a neurologist to look into and treat. Due to their insistence that nothing was wrong with me, my family spent years believing this, and were understandably reluctant to believe me over medical professionals. I knew something was majorly wrong. I know my mental health, and I knew that the two were not related, but I didn’t carry as much clout as a neurologist does in proving this. I spent 5 long years being told that ‘under no circumstance’ should I go ahead with this surgery, and that there were absolutely no medical grounds to do so – yet look where I am just 1 year post surgery.

I feel so angry at the injustice of this, not just for me, but for everyone else I know in the EDS community who has fought or is still fighting to get help for these conditions. I am livid that, potentially, my residual symptoms will be permanent, and that this would have been preventable with prompt treatment. Even I can see logic in the argument that if every other part of my body can be hypermobile or prone to herniation, then the same could apply to my spine and brain, and that neither would be good news to a spinal cord sat in the middle of these two important structures. I am also frustrated with the inability to get adequate follow-up care on the NHS – had I have been in a car accident and caused neurological issues in that manner, I would be able to get rehab on the NHS to help with this, but because my instability was caused by my EDS rather than trauma, none of this is open to me. Not only this, but since surgery, every neurologist I have spoken too has since congratulated me on getting the surgery they told me I should never have gotten – talk about messing with someones head.

I still have a long path to recovery ahead of me, and as per usual with a bendy body – you fix one thing, and another falls apart. I am now in the process of getting my hips diagnosed and treated (waiting on an MRI and steroid injections into both), and help for my lower spine as I have herniating and degenerative discs that are now causing a problem further down. I now also have 3 herniating discs in my cervical spine and am waiting for another referral to neurology to look into what my neurosurgeon suspects is thoracic outlet syndrome (I am getting numbness in my arm any time I lift it above shoulder height).

I will write the process of surgery in a series of posts – but I wanted to bring awareness to the psychological impact of such systemic neglect of a patient. Since surgery, I have noticed an increase of my PTSD symptoms specifically around medicine, and am also struggling to keep on top of my depression. Both of these feel inextricably linked to the gaslighting received from those who should have had my best interests at heart over the last 5 years. This is not a negative post by any means, but I feel that it’s important to say that although I am physically much better than I could have imagined possible (BIG thank you to all of you who helped me get there), the trauma of the last 5 years has not disappeared alongside my physical improvements.

The temptation to sit here and not mention this when so many people contributed to my surgery is very strong – but I have always wanted to give a realistic view of things in the hope this will be helpful to others facing or working with people in similar positions. It’s ok to feel grateful, angry and grieve post surgery – or any other combination of feelings.

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!



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.

Living Alone with Chronic Illness

Living with a chronic illness is hard.
It effects every aspect of your life – from eating and sleeping to getting out and socialising. Every day presents new issues and a continuation of the same old struggles that intrude on every minute that passes.
I am tired of being tired. I’m tired of being in pain, and tired of feeling like every single job to do is a mountain that is hard to climb.
Every task is broken into parts – parts that I never even knew existed before my condition deteriorated. Having a bath isn’t just having a bath; It consists of running it, finding a towel, turning it off, undressing, getting into the bath, washing my body, finding the energy to get out of the bath, drying myself, taking the plug out and dressing. This one small task that usually takes minutes for most has to be split into 10 different parts and usually takes me the best part of 2 hours. Whats is more is the exhaustion that follows this can knock me out for half a day or so.

Its hard to explain why you can’t manage to cook or do the washing up, but if every task has to be split into bight size chunks, the energy and time needed for this far exceeds any that I have in a day.

For this reason, living alone has its perks.
I don’t need to feel guilty that theres washing up on the side, or that some days I don’t have the energy to pick up the dog toys on the floor. I don’t need to explain why I can’t join in with the communal cleaning day, or that I would rather paying a cleaner thus looking lazy. I don’t need to worry that my washing stays in the machine a few extra hours before I manage to put it out to dry, or feel bad that I am not up for work like every normal person is.
In a lot of ways its done me good – but there are also some downsides.

Sometimes I am desperate for someone to chat to in the evenings, and someone to share the cooking with.
Eating is a challenge when its hard to cook, and the energy needed for the washing up doesn’t seem worth the effort. Sharing a meal gives food a purpose, and I am much more likely to cook if someone else is about.
The extra challenge is managing food when every time you eat you feel ill anyhow. I struggle to swallow properly, and often end up feeling horrifically full after just a few bights of food. Each day is different, and feels somewhat unpredictable. Some days I manage just fine, but other days even water comes back up, and often makes me choke.
For someone who used to be anorexic its a very hard thing to balance.

Seeing people day to day is also a big challenge. I go days without seeing anyone when I’ve crashed after doing too much, and this can really effect my mood. Loneliness is a common feature in many of us with chronic health conditions, and I have yet to find the answer to this. I have lost contact with many of my friends, and there are few that understand that most of the time people coming to mine is the only surefire way of seeing me.
I find it hard to meet new people. In a body that doesn’t look nor feel like mine, I am embarrassed to introduce myself. Walking around with a walking aid has dramatically shifted the way strangers react to me. No longer am I a ‘normal’ pedestrian – instead people stare and give me looks of sympathy. Those that have the guts to talk to me treat me like some poor young person who has had bad luck to deal with, but this interaction is rare.
I hate this part the most. I want to look and feel normal. I want to be back to the person I was before things went down hill – but I know that this is no longer possible.

Living alone is great most of the time, apart from when it isn’t.
I am lonely, the house is a mess, and most of the time my head is too foggy to function. Some days it doesn’t feel as great as it should.

More then my walking aid

So today I was at an art class – the first clay class I have done since I was 18, but at the place I usually go to do my painting classes.
I walked in (slightly late as I totally missed my alarm), and stood next to another girl who happened to have a walker the same as mine. She was lovely, we had a laugh and I sat next to her as we worked.

Shortly after, a woman came up to me and demanded to know what was wrong with me. This turned into 20 minutes of her telling me how her daughter was much more ill then me, and how she struggled so much but never thinks of herself as disabled etc etc etc.
I have no issue with talking disability, but I do have an issue with a stranger targeting me because I use a walking aid, and proceeding with trying to start a ‘Who’s sicker’ competition. (Don’t get me wrong – I have absolutely no issue with not being the worst off person in the world!)

Using a walking aid was a very difficult decision for me. I spent a good 4 years walking around using an umbrella in place of a stick – it became part of my wardrobe, and I was never really seen without one. What people didn’t realise was that I was using it to steady myself constantly. I don’t think I really noticed it – I gradually became more and more dependant on it, and even on the sunniest days I would be out with it ‘just incase it rains – you know how changeable England can be’.

Last year things got a little more hairy with the umbrella tactic. It consisted of being unable to drive for medical reasons (for 6 weeks) which led me to tackling public transport. Now I don’t know how many people have played the game of trying to balance on a bus with a very uncooperative body, but I can quite safely tell you that it doesn’t end well. This particular scenario led me to fall forwards head first as the bus put its breaks on, narrowly catching handle near the front, pulling my shoulders and knees out of place and breaking my beloved umbrella right in half. I scuttled off the bus as quickly as I could, wobbled home and hid away.

After seeing the doctor I had a referral to an occupational therapist. I wasn’t expecting anything from her – I thought I may be told to just muddle through, but to my horror the list of suggestions seemed endless. I came out of that appointment with almost every imaginable aid to suit a 90 year old.

The first time I left the house with a stick I felt embarrassed, but the first time I left the house with a rollator I was absolutely mortified. I was convinced that everyone would look at me. I was convinced that they would all judge me and think I was putting it on – so much so that I purchased a pair of mouse ears with the idea of ‘if people are going to stare at me, then I may as well give them something to stare at’. For the record – try it some day – there is something quite liberating about not caring about what anyone thinks of you, and making people smile at the same time.

That first trip was scary for about the first half an hour. I gradually got used to Dorris (yes I name my walking aids), and with shock I realised I had managed to be out of the house for 4.5 hours. That was the first time in years that I had managed to be on my feet for so long, and I was exhausted and in pain, but ecstatic.

I do still get stares and curious glances – but the pay off for me of not falling over, feeling less panicky about falling, and less pain overall (in both walking and not having weight on my back/shoulders from a bag) make it all so worth while that I don’t think twice. I struggle more to show this side in front of family – there is less understanding and perhaps more of a demand to see me as well. I spent so long hiding being ill that when it became unavoidable, no body understood the decline, and so there is little for them to go on.

These aids have become so much of my independence that I forget I am walking with them – so when someone approaches me in such a way as the woman in my class did, I actually find it quite upsetting. I am more then just a disabled person with a mobility aid. I am more then just my illness. By all means approach me, but ask about the person behind the disability. See me for what I am – even if it is as a slightly quirky short person with a very odd choice of hair accessories.