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).

An Intro

cropped-zebra-cute-animal-pictures2.jpg For me living with Ehlers Danlos Syndrome and POTS has been like living with a dirty little secret. I have always been known as the clumsy one, as the one who doesn’t work hard enough, or the lazy one. The person who seems too lazy to get a job alongside full time studies, or the 1 person in her year that couldn’t seem to manage the 25 minute walk into music college and the 25 minute walk back.

It was easy to go along with this. To take these assumptions as reasons of my falling short alongside those around me, but as the years have gone on I have been forced by my body to admit that something else is going on.

I have lived with chronic pain since the age of 14. It started on a music course – 5 days of playing, and I suddenly found that I couldn’t even grip a pencil, let alone cope with holding a bag or playing my instruments without the (now familiar) feeling of nausea that accompanies that sort of pain. Suspected repetitive strain injury in my wrists quickly became neck pain, pain in my shoulders and arms and back pain. I had issues with my TMJ (jaw) from the age of 12 – it would click and clunk, and lock for months at a time – I regularly had periods of time when I couldn’t shut my teeth together, and other where I couldn’t open my mouth more then a centimetre or two. Accompanying this was severe insomnia (which had been going on since the age of 7, and is still with me almost 21 years later), clumsiness and joint hyper mobility – sitting with my feet behind my head was a favourite party trick of mine!

As the years went on, the pain became my normal. It never crossed my mind that anyone had a life without pain so I became adept and carrying on regardless and hiding these parts as best I could. I battled for 7 years to get through a full time degree at music college, and it was only really in the last couple of years of my studies that I began to accept that I had a problem. By this time my pain and other symptoms had reached new levels. I often had periods of time where I could no longer feel my fingers. I had rehearsals and practice sessions where my joints popped so painfully that I burst into tears or ran out to go and lye in a room alone and cry on the floor. I was constantly dizzy and out of breath (what I now know to be Postural Orthostatic Tachycardia Syndrome), and constantly exhausted.

It was in my final year that my life began to be put on hold. For the 3 years previously, I had found a love of dancing, and was in classes for 15 hours a week – it was where I felt free, and where I was at peace with myself. However I hit a wall. My pain became so severe that I was waking up 4 times a night in agony, and was needing to pop joints back into place numerous times a day. The dancing had to stop if I had any chance of finishing my degree, and sure enough with a lack of exercise to strengthen my already weak/hyper-mobile joints, I deteriorated faster then ever.

A year after finishing my degree I am sat in a room alone surrounded by mobility aids, and a collection of crockery that I just don’t have the energy to clear away. I am in the midst of seeing numerous specialists, and am building a collection of labels that I would rather not have. 2 years ago I was still managing the odd dance class – and now I am reliant on a blue badge to get me around, and am increasingly reliant on friends and family to help with basic home and personal care.

I don’t know how to be an ill person. I don’t know how to shake the expectations I used to have of myself, or to build a life that integrates being ill with the person that I want to be. I do know that the only way through this will be to find a way to be open and honest with those around me. To accept that for now, even tho I have the body of a (very bendy) 90 year old, I am still a 28 year old woman with the same stubborn determination that I had many years ago. I may not be well enough to achieve the many dreams I used to have, but I’m not out of ideas just yet.