Another Day, Another Diagnosis

Yesterday I took yet another long journey down to London for another hospital test. This time around, I had the joys of a gastroscopy, which too be honest is not the nicest thing I have ever experienced – 6 hours nil by mouth may be tolerable if you live right by the hospital, but doing this along side a 2.5 hour journey was particularly unpleasant – I never realised how much I love drinking water!

I elected to have sedation as I am not a fan of feeling like I can’t swallow or breath, and judging by the bits I remember (namely choking), I’m pleased I did! They also took a couple of biopsies whilst down there, and again, the idea of knowing someone is taking a small chunk of my digestive tract isn’t something I want to be aware of while I’m unable to run away.

Sitting on the ward with a cannula in my arm felt odd. I don’t often consider myself to be ‘sick’, but each time I’m faced with a hospital test, it suddenly becomes real. I become painfully aware that these tests aren’t given to healthy people, and the number of tests I am in the process of having are certainly above the average for a healthy person of my age. This last year I have had far to many tests. Scans, an MRI, an echo, cardiac stress test, lung function test, 7 day halter monitor, numerous ECGs, tilt table test, a sleep study, 2 weeks wearing an actigraphy monitor, many hospital appointments, too many blood tests to count, and now comes the barrage of tests for my digestive tract and bladder. EDS really doesn’t let up. The worst thing is that I am fully aware that these are by no means the only tests that will come up in the near future as there are still other referrals to be sorted.

With every test comes the chance of yet another diagnosis, and this gastroscopy was not to disappoint. I have had digestive issues for so long that I forget it isn’t normal – recurrent issues with acid reflux, dysphagia, bringing up food (either undigested or partially digested), feeling sick every time I eat, bloating, pain, food intolerances, IBS type symptoms and only managing small amounts of food in one go before feeling like I’m going to throw up. I spent years trying to get help for it, but have repeatedly been told that its ‘probably just IBS’, or other equally unhelpful comments.

It wasn’t until I paid for that private appointment with a POTS specialist that these issues were taken seriously, and I after a long fight with my GP, I finally got a referral to a gastrologist.

With Ehlers Danlos Syndrome and POTS, gastric issues are common. A body thats too stretchy often leads to complications, and POTS is no better. Common issues include dysmotility such as gastroparesis, GORD, hernias and dysphagia, alongside issues with constipation, diarrhea, pain and cramps. To put it bluntly, its a whole bundle of fun.

I hadn’t really put much thought into weather they would find anything wrong during the gastroscopy – I think things have been belittled so often when I have gone for help that I had thought that there was nothing really wrong. If you spend enough time telling a patient that it must just be because they are tired/stressed/nervous then they start to believe it. I genuinely thought that perhaps everything was in my head rather then a real problem, and that these tests would only highlight this.

So after I came too, I headed into the nurses office who went through the exam. To my surprise I have a fair sized sliding hiatus hernia (and some damage done by acid reflux) to add to the list of weird and wonderful conditions caused by my faulty collagen!

The thing that has thrown me off most about this is that according to the nurse, this doesn’t explain a lot of the issues I have with my stomach, and so chances are there will be another unexciting diagnosis right around the corner. I have a couple more tests for these on the horizon, and it is safe to say I am looking forwards to these like a hole in the head.

Sometimes I think that I don’t really want to know what is going wrong anymore. I have a list of diagnosis fit for any 90 year old, and its scary to think just how many more may be added to the list. Ignorance is bliss as they say.

To add another spanner into the works, my blood test results for my thyroid levels have come back wrong for the second time – so no doubt that will be the next thing on the list to figure out.

For someone that looks so well, I certainly have a talent for being broken!

What I Wish I Could Say To My Doctor

Well its been a short while since posting, but as many of you know first hand, the life of a stripy person is never dull.

Over the last few weeks I have come up against the joys of the national health services again – the most tricky of these services seeming to be the good old general practitioners. Yes, thats right, those smiley happy (usually) pointless people that you have to deal with every time your health takes a turn.

In general, I tend to avoid going. Dealing with Ehlers Danlos Syndrome has taught me a lot – how to grin and bare it, how to put on a smile, and most importantly how to ignore the pain in order to find some way to get on with the life you should be having. Unfortunately, the biggest lesson I have learned upon the way is that seeking medical attention is more likely to leave you labeled with unsavoury terminology rather then give you any help in dealing with the symptoms that EDS creates.

If I could openly talk to a GP who I knew would actually absorb the information, there are a few things that I would like to point out to them, and today these have been brought into the forefront of my mind after yet another frustrating and pointless appointment. So – brace yourselves – we may be here for a while!

First and foremost I would like to make it clear that Ehlers Danlos Syndrome is a very real illness. It is not the stuff of legends, nor is it something out of a fairy tale. No. Ehlers Danlos Syndrome is an illness caused by faulty connective tissue. As a doctor, I would like to assume that this is a conceivable idea, and shouldn’t pose too many issues so far as forming some understanding of what may be affected. Most importantly, I would love to be able to assume that you didn’t get your notes mixed up in med school and come away with the idea that having said faulty connective tissue is not possible, and is in fact something only a hypochondriac would say.

Second, I would like to make it clear that we do not tend to frequent your consulting rooms for fun. Believe it or not we are people that do have better things to do with our time. Speaking for myself I can quite safely say that I would much prefer sitting in the pottery studio then waist my life sat in you’re waiting room. We live our lives in a lot of pain, and for the most part we tend to get by and get on with things without needing your continual attention.

So, when we do turn up, PLEASE LISTEN with open ears. Understand that we may turn up with new, worsening or scary symptoms. Listen and try to understand that there are many things that can go wrong when the collagen in your body is faulty, and that these really do need to be kept in mind before making a decision on the cause of things. It may look like a clear cut diagnosis, but unless you bear in mind that there is a pre-existing medical condition underpinning this, then you are likely to be barking up the wrong tree.
More times then not, we leave your office feeling that seeking help is a futile experience, and for me this has led to years of avoiding your offices at all costs. This is continually reenforced every time you refuse to listen, and pretty much every time it turns out that there was indeed cause for concern years later when I finally find someone who makes the time to investigate things properly.

Thirdly, understand that we are not drug seeking. You may look at the list of medication and think it to be unsuitable for a ‘healthy young adult’, but in reality you are not dealing with someone who is the picture of health. You are dealing with people who are in pain, who have stomach issues, urinary issues, depression/anxiety, POTS, joints that sublux or dislocate multiple times a day – to name a few. You are dealing with people that have so many systems in their body affected that it is very difficult to treat in almost any direction you can come at it. Yes, heat patches, stretching and a tense machine may be of use if your muscles are sore, but they really don’t cut the mustard when your hip refuses to pop back in for days on end. Mindfulness again may help you to calm your head and become mentally stronger, but not every symptom of ours can be controlled with this – I should know, I can tell you just how ineffective it is for intense pain from sitting in a service area balling my eyes out after attempting to use it to enable me to drive for another 3 hours that day.
Sometimes medication has to play a role.
I would love to be free from my tablets, but in reality these keep me at a level of being semi able to function. They dull some of the pain, they boost my mood, they slow my heart rate – they even help my stomach acid to stay where it should be rather then coming back up to my mouth. They are far from ideal, but they are often preferable, and even necessary.
So before jumping to conclusion that we are entering your office solely to gain access to your prescription pad, please understand that we would jump at the idea of never needing another tablet ever again if there was such a treatment available.
We are ill people with a very complex illness – we are not addicts.

Fourth (and I can’t believe I am even having to put this into words), you really need to understand that Ehlers Danlos Syndrome is not a ‘phase’ that we are going through. This is a genetic condition – and just like every other genetic condition you treat, that means that it is part of how we’re built. We aren’t going to wake up one morning with a body that suddenly remembers how to fix itself – our blueprints are wrong, and we have already been built. These symptoms aren’t simply going to disappear overnight, and many of them will sadly never disappear at all.
For some people (the luckiest of an unlucky bunch), they may not deteriorate too much – but for many of us, it is a syndrome that can cause long term and severe deterioration in almost every part of the body. Its called deterioration for a reason.
By telling us that we will ‘get better’, or ‘it will pass’, you are simply reenforcing our understanding that you ignore, diminish and don’t listen to us. You are making it crystal clear that our illnesses are not cause for concern, and therefore making it evident that we are unworthy of treatment.
The damage that this can cause is monumental. Not only does it make it harder for us to get treatment, but it can have horrific effects on a patients mental wellbeing.

Lastly be aware that we know our bodies far better then you ever could. After all – we are living in them. If we come to you for help, it is usually because something isn’t right, and isn’t our normal. You’re medical opinion is only useful if you take the time to hear us when we try to talk to you. You may suspect how we are feeling, but unless you actually take the time to talk with us about our symptoms, then how on earth can you make a decision on what is wrong?
We have bodies that suffer with chronic pain – therefore, if we are saying that something feels different, then it is extremely important that you don’t assume this is just what chronic pain feels like. We know what our pain feels like – we live in it day-in-day-out. If there is a new and severe type of pain, this really does need to be looked into just as you would for any other patient. Just because we have pain does not mean we can’t tell if things go wrong.

It is exhausting to be continually pushing for care, and extremely frightening to be ignored when you know that something isn’t right. We are the experts on our body, and more often then not, we often have to become the experts in our own condition. It would be a much easier ride for those with unusual conditions if doctors could accept, learn and work with us, rather then assuming that they know everything. They are only human after all.

The Reason I Speak Out

Recently I have had a few people telling me that I am ‘strong’ for talking openly about this. ‘Brave’ to publicise my illness, and that this sort of thing takes guts.

In all honesty, I do not feel any of these. Strength, bravery and guts come from being left with no other option. If I do not talk about my invisible illnesses, how on earth can I expect those around me to understand that I am ill? I have spent years getting angry, upset and frustrated with being continually labeled as lazy, but in reality what is there to go on?

I am young, I look fit, and I look healthy. I make the effort to go out, and on the days that I know I can’t bear the pain or exhaustion I hide away so that nobody has to deal with it. To the outside world I am not obviously disabled – I am normal.

The fall out from this continual cycle of putting on a mask for the world is that you begin to feel low. I have struggled with depression for over 11 years, medication has been a life saver, but it can’t do it all. In reality as much as I do need that medication, I also have to change to survive.

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Recently my mood dipped again – its a deep dark world inside the head of a person with chronic pain and chronic health conditions. Who wouldn’t get depressed if life day in and day out was painful, unpredictable and lonely? Who wouldn’t get depressed when being forced onto a different path from the one you have worked so hard to be on? Depression is a very reasonable response to chronic health conditions, both physical and mental illnesses.

Although I am low, I have also been in this cycle enough to know that I will bob up again, even when it doesn’t feel like it. I put things in place to keep me safe, and I force myself to engage in the outside world. Sure, staying in bed in a numb state or crying for hours on end are the things that I want to do, but I also know it does nothing to help me climb back into the light. This particular time I have gone so far to remove any spare medication from the house. That was a massive decision to make, but I know it was the right one. I felt extremely anxious without them (oddly they are like a safety blanket to me – both for pain and depression), but with the temptation out of the way it has given me some breathing space from the darker thoughts that I was having.

I also had to find something to motivate myself. It used to be dance that I ran too when I was depressed. It was the most amazingly wonderful hobby in terms of my mental health. Any anger or sadness got ploughed strait into a class, and as my whole attention was focused on how to get better, it gave me some wonderful time out, no matter how rough things were. Unfortunately I am far from able to balance on one leg, let alone be jumping around a dance floor now, and when I started getting low, I was also hit with just how much I have lost.

I knew I had to find yet another coping mechanism, and thankfully I have found and joined up to what is effectively a community pottery studio. I have a code for the door, and can go any time. The place is filled with absolutely lovely people, and everybody has welcomed me. The clay work is therapeutic, but what is most amazing is the sense of belonging that I never usually have. They take me as I am, and I don’t hide myself away – I can spend my time chatting and creating and bonding to people – this is the gem that will pull me out of myself and back into the real world once more.

Depression for me is always followed by change because I literally couldn’t stay alive if I carried on as I was. It is not something that I will be ashamed of, and it is not something that I hide – it forces me to keep pushing myself upward when everything else is pulling me down.

This is not a choice though. Talking about this is no longer just an option. If I want to beat this depression, to cope with the pain and build a life with my illness then I absolutely have to explain the invisible to those around me.
It isn’t strength – it’s necessity.

Pain & Fatigue

I have often wondered quite where the pain/fatigue cycle started for me. It seems to be a little like the chicken and egg scenario. My high pain days seem to coincide with the days I am most exhausted, but weather thats because the pain tires me out, or the lowered energy levels give me less tolerance to my pain I will never know.

This particular cycle is tricky – particularly with EDS and POTS. In theory the more you can strengthen your body through appropriate exercise the better you’re body is able to keep its joints in place, and regulate your heart rate and blood pressure in an upright position. In effect this would mean a decrease in both pain and fatigue.

In the case of POTS this is largely things you can do lying down (no, not the one your thinking of), and in EDS it is exercise that will gently build up strength without putting undue stress on your joints.

In practical terms however, this only seems to work so far. Sure I am aware of these factors, but on days where it takes all of my strength to head downstairs (on my bum) to have a change in scenery, and struggle to work through the fogginess or push through the pain enough to get dressed, it feels absolutely impossible to get myself down to a swimming pool or off to a pilates class. On the days that I do push myself to do things (such as appointments or family gatherings) I am able to put on a good enough show, but the following few days are a living nightmare.

Having had a busy weekend, and 2 hospital appointments in London in the space of a week, I feel like a zombie. I may not look like I have an axe sticking out of my head, but I sure as hell feel like its there. My whole body aches, far too many joints have subluxed, and I appear to have a forcefield surrounding me ‘protecting me’ from any outside information getting near to my brain. It is on days like today that I begin to wonder just how on earth I can manage another 50 years of this.

Insomnia is another part of this cycle for me and many others. Again, it is hard to know where it got added into the mix, or if this was an initial member of the party, but it doesn’t half play a large role in keeping the cycle running. I struggle to sleep at the best of times, particularly if my pain levels are high or I’m too tired (oxymoron I know). I will toss and turn trying to find a semi comfortable position till about 4am, and often wake up to 4 times a night in a huge amount of pain. I attempt the usual sleep hygiene advice, and practice mindfulness with mixed results, but this never solves the problem.

I remember a doctors trip just over a year ago. I felt like I was loosing the plot. I was going through a particularly bad patch with both pain and insomnia whilst writing my thesis, and plonked myself down begging for help. I had been countless times before pleading for a referral with a pain specialist to no avail, and I had no idea how to manage things. I was barley sleeping at all (we are talking months of waking up countless times in pain averaging 0-2 hours sleep a night) and tried to explain to her the problem. Her answer was ‘well I don’t want to prescribe you anything for your sleep because your waking up in pain’. Fair enough – to which I replied ‘Can we do something about my pain then?!’. Her reply was ‘No, theres nothing we can do’.

I came out of that appointment and cried. To have insomnia on top of pain is extremely tough. Not just because your exhausted, but also due to the fact that you get absolutely no break from it. Sleep (when I do get it) has often been the one and only time in the day/week/month where I have managed to have some time out, and doctors often forget that this is extremely important if you suffer with pain on a daily basis.

Having deteriorated hugely at the points in my life that I was exercising most, and having gotten to a point where just cooking a basic meal can be the sum total of my energy or pain tolerance for the day I am at a loss of how to help myself. I can not push my body much more then I already do, and each day seems to bring a worsening in pain and fatigue. I couldn’t tell you the last day I had no pain, or even the last day that the pain was able to merge into the background. I can’t remember the last time I felt like I had energy to spare, or a night that I was able to wake up feeling truly rested. It is exhausting in and of itself, and extremely isolating.

Those around me recently have tried to be positive. ‘You will get better soon’ or ‘They’ll find a way to fix it’. ‘It can’t be that bad’ or ‘If you just do X then you’ll feel better’, but the reality is very different. EDS is a genetic condition. My genes can not possibly be fixed. Chronic pain is notoriously difficult to deal with – as you experience pain, your brain builds pathways. The more pathways that are built, the more you feel pain. I have been in pain for as long as I can remember – this isn’t going to be a quick fix, likelihood is that this isn’t going to be fixed at all. I pushed and pushed myself until I became too unwell to do so – there is no more energy left to ‘just do’ anything.
I don’t feel positive, and am struggling not to allow my angry side to run free with the next positive comment thrust in my direction.

Accepting that I am ill is much like grieving for any other loss. I am hurling between all 7 stages at a rather alarming rate – the rational side of my brain that may be able to tolerate the views of those that don’t have experiences in chronic pain/fatigue or other illnesses appears to have left the building.

Assessment with Social Services

A few weeks ago I took a massive step into the world of accepting my disability. The last few years have been getting progressively tougher as far as EDS/POTS go, and as ever, I have been stubbornly refusing to admit defeat. I pushed and pushed myself to do all the things I ‘should’ have been doing; I hid the typical pay off for such activities (think of it as borrowing 5 days worth of energy to manage the trip outside of the house or food shop); I refused to push for medical help for fear of being accused of attention seeking behaviours, and I would barely mention anything to those around me for fear of the same reaction.

I have heard countless times from other EDS sufferers that their problems were diagnosed as mental illness. Depression, Anxiety, and even personality disorders are common – the logic of these decisions seeming to be ‘you can’t possible have that much wrong with you, you must be mental’. Unfortunately when your collagen doesn’t work properly anything and everything can be affected!

Mental health problems for me were a huge barrier to accessing help for both EDS and POTS. Due to childhood trauma and difficulties with my family I developed depression, PTSD and anorexia. These 3 diagnoses have been fairly acute at times, and it has been an up hill battle to attain the right help to get better. What I hadn’t been told was that someone had also labeled me with Borderline Personality Disorder. This particular diagnosis made it almost impossible to get any help at all. Every plea for support led to people ignoring, disbelieving and refusing to put help in place. I was repeatedly told I would get dependant on the system, and that there was nothing anyone could do for me. This also extended out into the treatment of my physical health problems, and it wasn’t until I fought to get the diagnosis removed from my records (and changed GP) that I was finally at least listened to. I had spent 11 years of my life repeatedly asking for help with pain, 4 years fighting to see a rheumatologist, and 6 years pushing to get an assessment with a physio! I would love to tell you that all of my problems getting help were magically fixed with the removal of BPD from my records, but it is rare to meet a doctor who will take the EDS symptoms seriously.

With all of the above in mind, it feels particularly bizarre that I have been given a recent assessment with the social services, and that the person who assessed me saw a genuine need for a lot of help with my day to day living. She will be organising direct payments for me, and I will essentially be employing someone to do the exact same job I had to give up not long ago.

The assessment itself felt odd. I am rarely honest with those around me about what I can and can’t do. People don’t know that having a bath or shower exhausts me, causes palpitations, fainting and often leaves me stuck due to my joints going out of place (I manage it once in 5/6 days at the moment, and managed to sprain my wrist trying to get out). People don’t know that I struggle to wash my hair more then once every 4-5 weeks due to pain, subluxation and fatigue. I don’t tell people that I struggle to cook anything for myself now (having gone from cooking all meals and baking twice a day for years) or that I often can’t eat much anyhow has my jaw pops out of place and my swallowing has gone to pot. I barley leave the house, I rarely have the energy or lack of pain to do simple cleaning tasks, and I struggle mentally due to the adjustments I have had to make so quickly. I can’t tell people all of this and more because I am petrified of being labeled as lazy, attention seeking – asking for help was one of the scariest things I have done. The social worker made me feel totally at ease – nothing I said made her react badly, and not once did she accuse me of making things up. On the contrary she was putting in more help then I would have ever asked for – recognising not only the help I need with daily living, but putting in support to get me out which could potentially open my life back up to something half normal.

The next steps are to wait for the hours to be calculated and to have a financial assessment to see how much (if any) I need to pay towards my care. As I am not working it shouldn’t be extortionate, and to be honest it is likely to be totally worth it just to regain some of my normal life back again.

The transition will feel difficult – at no point could it feel comfortable to agree to help washing. It will be odd having someone to help with food and cleaning, and even stranger to have someone around to support me leaving the house. Minus the washing, these are tasks I performed when I was a personal assistant to a disabled woman, and I never thought I would be on the receiving end just 11 months after starting that job – especially not at the age of 28.

I hope I will adjust – but this is no longer a real choice. If I stay like this I may as well write off a future in exchange for a life full of day time tv and poor hygiene. I want a life. I want to get to a point where I can do normal things, study or work, and have the energy to engage with the outside world. If I need a little extra help along the way to achieve this, then so be it.

Chronic Illness is a Lonely Place

Having a chronic illness is more then just feeling unwell. It is all consuming, scary, and bit by bit it can eat away at your life until there seems to be nothing left.

Most of the time, like many others, I tend to provide the outside world with the version of me that looks well. I barely talk about the pain, the fears and the frustrations. I want people to see the person that I am without the illness colouring their views, but this also means that they only see a part of me.

Underneath the facade lays a river of emoitions ranging from anger, frustration, fear to simply feeling numb. Day upon day, as my body does yet another unpredictable thing, the mask gets harder to hold. This leads to isolating yourself simply because you don’t have the energy to provide the outside world with that cheery sarcastic person you have always appeared to be. As the days that I see people diminishes, depression sneaks back up on me, and I am finding it a fine line between staying mentally healthy, and sinking back into the all to familiar world of darkness that I have become accustomed too.

It is difficult to be in pain. It is difficult to feel exhausted for no apparent reason, and difficult to explain the invisible symptoms in a way that the uninitiated will understand. How can I possibly explain that I can’t even wash more then once in 5 days or cook myself a simple meal anymore? How can I explain it to people when I look so healthy on the outside?

I used to be a different person. Having essentially grown up with pain (be it emotional or physical) I became adept at pushing through. I have a stubborn streak, and this meant that I was able to force myself into my work/studies/social time even on the worst of days. I was able to push myself far beyond the point that I should have stopped, and it is this part of me that is most frustrated. For the first time in my life I have had to stop. There has been no choice in this. It isn’t laziness or a lack of motivation – I have simply reached a point at which my body has decided it can’t be pushed any more. I used to be extremely active, I used to keep up with my hobbies and travel around unaided even though I was usually only managing 2-3 hours of sleep a night. I had big dreams for what the future would hold. Dreams of what I would become, and what I would work as. Dreams of fixing myself somehow.

Alongside chronic illnesses such as POTS and EDS you are often forced into the position of having to reassess your abilities. As each day goes on, your dreams and independence are slowly stripped away from you. You are suddenly aware that all of the things you had worked towards may not work for you any longer; you may not be able to keep up with the pace of the type of work you have always dreamed of, or are in too much pain to keep up with your peers. Every aspect of your life and your future is now coloured by the knowledge that this unwelcome bedfellow will be with you for life.

So when those in the outside world are telling me to ‘buck up’, ‘get on with it’ or that ‘things will get better soon’ it makes me want to scream. The number of well meaning comments that go along the lines of ‘have you just tried to ignore it?’ or ‘I know someone with a disability far worse then yours and they run a business’, meant in the nicest of ways, actually lead to you isolating yourself more from those around you for fear of frustrating them with your (perceived) pessimistic views on life.

I wish more then anything that I could be totally honest with those around me, but like many other chronically ill people, I have learned that looking well leads to far fewer issues then laying yourself bare.

Perhaps one day I will build up the courage to speak these words aloud or to answer truthfully when someone asks how I’m doing. Until then I will continue to perfect the happy facade (whilst swearing under my breath as yet another joint goes on an unexpected and unwelcome visit to its neighbour).

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.