Ehlers-Danlos Syndrome

The Great Unease

One thing I have learnt over the past 10 years since being diagnosed with a life-altering illness, is that I am yet to feel at ease with my life. There comes a time in your life, when you hit the big THREE-O and you’re supposed to have your shit together. Well, I thought I had my shit together; turns out, I haven’t.

You see, I’ve always been an old soul. I’ve always known I wanted to settle down, get married and have pets (never children) and while it seems I am on track with my life goals, I am still feeling the great unease surrounding who I am and what I bring to the world.

Since I was a young teenager, I’ve always wanted to be famous somehow. I wanted to sing, but stagefright put paid to that dream – likewise with acting (for which I was awarded an ‘exceptional’ from my year 8 Drama teacher) and performance anxiety has shrouded my life in many ways.

I’ve always had the fear of being like everyone else. When I was at school I made it my plan to stick out like a sore thumb – and was bullied because of it. But I was stoic in that I didn’t want to fit in and be like everyone else, so I took it and it made me strong.

Yet here I am at the age of thirty, wanting, in part, to be like everyone else. Not, in the sense of I want to be in a job I dislike, pay rent to a greedy landlord and have children drive me round the bend, but in the sense that I want to be a productive member of society. (You have no idea how much I hate myself for saying that!)

Living with an incurable, oftentimes debilitating illness means I am not a ‘productive’ member of society. I am unable to follow my career goals (of which I have had many, shot down in a blaze of smoke) and now I’m left with a sense of ‘now what?’

I felt so compelled by these feelings of unease that last year I enrolled onto a distance learning Degree in History and surprisingly to me, I’m doing very well on my first module (If I was studying at a brick uni, I would be at distinction level!) and I’m really enjoying spending time wisely, studying. I no longer felt like I was wasting away in my bedroom waiting for the weekend when I get to spend time with my partner of nearly 3 years.

However, I’m now nearing the end of my first module (of which there are 6 – one per year) and I’m finding myself twiddling my thumbs again. I’ve started the audiobook of the set book for my next module yet it doesn’t start until October.

People think being at home and ‘off work’ is a dream lifestyle. I won’t argue that it has its benefits – I can stay up as late as I want and wake up as late as I want, for example, but I’m also trapped inside 4 walls for 90% of my day and two thirds of the week. As an unworking woman, I do not have the funds to be galavanting around in a car (I can’t drive manual and cannot afford an automatic car) nor do I have the energy to do so.

I spend my days lying on my bed in various positions (shifting when the pain becomes too much to bear) and it’s demoralising. Seeing all those people on Instagram going places in life makes me feel uneasy. In the pit of my stomach I feel the longing to have a ‘normal life’ like all these people I watch every day.

But then, I have to remind myself, yet again, that I’m not normal. I do have an incurable illness and I will have it for the rest of my life. It’s really really hard to balance this unending feeling of disquiet in my soul, with the knowledge that I’m doing the best I can. I have an enquiring mind and I want to see the world – this is in complete competition with the fact that my body was not built the same way as my mind. My body is broken, but my mind is sharp.

How does one reconcile a life wanted, with the life given? How does one overcome the odds when they are all stacked against you? This is something my mind continues to wonder, while I lie here, in pain, day after day.

Student, once again!

I can’t believe I haven’t written a blog post about the fact that I’m now a student (again!)

I am 5 weeks into a BA (Honours) History degree with the Open University and so far, it’s been great! I’m ahead in my studies and handed my first assignment (on Cleopatra and Cézanne!) with 16 days to spare. I figure even if I’m way off the point, the second assignment is a second go at the first assignment so all’s not lost!

This is my desk at the moment (borrowed laptop, antique dining chair!) and it’s not overly comfortable. Having a condition like Ehlers-Danlos Syndrome means sitting is difficult, typing is painful and so is holding a book open! Thankfully the Open University have a great support team for disabled students and they sent me ring bound copies of the course texts so I don’t have to hold them open!

I’m also in the middle of applying for Disabled Student Allowance to hopefully get some dictation software, an ergonomic chair and some other things that will help me study more successfully while being disabled. 

Unfortunately I wasn’t able to attend the Day School as I haven’t been given any funding for travel yet (hoping that DSA will cover this) but I did make it to a local tutorial which was nerve wracking but really interesting. I actually found myself answering all the questions the other students directed at our Tutor so I’m feeling like I’ve absorbed all the necessary information!

I will be writing updates on my studies as this is something that may interest other disabled people who would like to study but don’t know where to start! 

If you have any questions about being a disabled student, please do feel free to get in touch, I’d be happy to answer your questions! 

New Beginnings (the end of Stanmore)

It’s been two weeks (I think!) since I gave my room key back to the Mercure reception and said goodbye to my new friends and goodbye to the room that had been my own little bit of heaven for the last three weeks.

I knew I wouldn’t be able to keep up with writing the blog during the three week programme, so I thought I’d give it some time and come back to the blog with a fresh perspective of the last few weeks…

The Pain Management & Rehabilitation programme run by Stanmore was an experience unlike any other. The first question the Psychologist asked me in my first one to one session was about my expectations. I had absolutely no idea what my expectations were because I knew so little about what the programme actually entailed. I’d had a brief powerpoint presentation at the pre-assessment and it was so vague I really didn’t know what to expect.

One thing in particular I didn’t expect, was to meet such an incredible group of women. There were 7 of us originally, but one lady left after the first night due to her being scheduled for surgery, so we were then down to 6 ladies (or patients, as they call us – which was strange as we were all staying in the hotel, rather than patients on a ward).

I have never met such an interesting, diverse and strong group of women in my life – the most amazing part of the course was spending time with a collective of women who all shared the same ‘secret’ – we’re all in pain.

Pain is such a funny topic. There isn’t a single person in the world who doesn’t know what pain feels like, yet there isn’t a single person in the world who knows what YOUR pain feels like – and that’s rather extraordinary, if you think about it.

Living in constant pain is horrible, it just is. But, when you meet other people who also live in constant pain, something happens. Personally, I found compassion (that I didn’t know I had) and empathy (again, another emotion I struggle to access) in bounds, not only coming from myself, but I also recognised it in them too. One grimace on my face and they knew instantly I was in pain. It’s a wonderfully comforting experience.

The programme ran from Monday morning to Friday afternoon for 3 consecutive weeks and all but one ‘session’ was based at the hotel. We were all given rooms close to the St Andrews and Cambridge suites that were used for the theory based seminars and the Physiotherapy and Occupational Therapy sessions. We were all given timetables at the start of each week with all our sessions mapped out for the week ahead.

The first week started relatively slowly and then the second and third weeks were busier, as we’d become more accustomed to the routine of the programme.

There were a few issues with the programme, mainly to do with the hotel itself – the hotel pool (which we had access to during the whole programme) had heating problems and so we had to miss out on a couple of hydrotherapy sessions – 26 degrees wasn’t pleasant.

The other issue was with the kitchen – the programme is on a full board basis so all food was included, but the kitchen staff weren’t exactly happy (or knowledgeable enough) to deal with two of the ladies’ dietary requirements (gluten free / low FODMAP diet) and it was a traumatic event every night trying to get them fed.
I  wasn’t too happy eating from one restaurant menu for the whole three weeks – there are only so many falafel burgers you can eat before you get sick of them and only so many portions of chips you can eat for lunch before you start to pile on the pounds!

The programme itself has been a huge help to me personally, although I had already set up a lot of my own coping mechanisms in the 10 years since I was diagnosed. For example, relaxation and meditation were already a large part of my life so I felt like a few times it was a bit of a ‘teaching a granny to suck eggs’ situation, especially during the ‘nutrition’ session, but I realise I’m probably in the minority and that a lot of people will really benefit from what the course has to offer.

The occupational therapy sessions were interesting but I wouldn’t say all that helpful for me personally. Firstly, I don’t cook (I hate cooking and I’m lucky that my partner cooks for us!) so there wasn’t much they could teach me in that respect. I can’t hold a pen or pencil so the mindful colouring session was a bit of a miss too, but some of the other ladies found it really helpful.

The first OT I had (we were given a different OT after the first week, which was great!) wanted to change my sleep routine but I was assertive in that I was happy with the routine I currently have and would rather focus on other potentially ‘unhealthier’ parts of my life to change.

I will stress that the buzzword for this programme would be ‘change’. I have no problems with change (I get bored easily) but there are some things I’m not willing to compromise on and sleep is one of them. I’m sitting here writing this blog at 2am and that’s just how I work; my creativity hits a peak at this time and that’s just how it is.
If I was to have a 9-5 job, my routine would change and I’d suck it up, but I cannot work and therefore I have the luxury of living to my own rhythm, not society’s. (End rant!)

Another big aspect of the programme is learning about pacing. You’ll hear the term ‘pacing’ a lot if you join chronic pain groups on social media, but hearing about it and then being taught how to do it, is another thing entirely!

Pacing is where you work out how much of an activity you can do, and then changing your position (or stretching, or changing how you carry out that activity) so that you interrupt the pain before it hits you. I had already started pacing some activities before I started the programme. For example, my partner carries a fold out stool with us when we go on holiday or go to a castle or historical house. I make sure I have something to sit on at regular (or sometimes random) intervals so that I don’t get exhausted too quickly. It means then, that I have more energy to do more/see more.

One thing about the programme I will rave about is the physiotherapy. Before starting the programme I was most excited to get the chance to work with a physiotherapist who knows about Ehlers-Danlos Syndrome as I have had such terrible experiences with physio over the years. I was right to be excited, as the physio I was appointed was fantastic. She was so knowledgeable and personable and I felt really comfortable with her. We discussed my current problem areas (shoulder and lower/mid back) and my love for yoga and pilates (and how I struggle to exercise during a flare-up) and we created a yogalates routine I can do every day as my physio, which incorporates both my shoulder and back problems. I’ve been able to do my physio every day since finishing the programme (thanks to having  an enjoyable physio routine and partner who reminds me to do them every day!)

It’s been two ish weeks since the programme finished and life has gone back to ‘normal’ – I am still struggling to pace some activities that I do most – like using my laptop and watching TV and DVDs on my laptop, but I’m sure in time and with practise, it’ll get easier.

The weirdest thing is not having the other ladies around. I say ladies, I mean friends. I truly feel honored and blessed to have been put on the programme with each and every single one of them.

More than just my illness (Stanmore)

I’m still not 100% sure how comfortable I am blogging about my hidden illness. It’s a difficult thing for me to talk about, as I try not to let my illness define who I am. I started this blog as I’m a huge fan of talking about the things that interest me (like travel, fashion, beauty etc) and I didn’t really want to go down the ‘pity me, I’m ill’ route… but I believe that being a writer is about writing about things that may make the writer or the reader uncomfortable. If I only wrote about the superficial things, I would be doing myself a disservice I think.

So, if you’re not into reading about chronic illness, feel free to skip this blog post and focus on my other topics. If, however, you know someone with a chronic illness, chronic pain or Ehlers-Danlos syndrome, this may interest you!

Last year I paid privately to be seen by an EDS specialist Dr Mittal at St John’s and St Elizabeth’s hospital in London.She suggested I apply to go on the 3 week residential pain management course at Royal National Orthopaedic Hospital at Stanmore.

The three week residential course is designed to help rehabilitate people who live with a chronic illness or chronic pain.

Interestingly, I often hear people use the word ‘chronic’ incorrectly, as if to mean ‘severe’ so let me just say that chronic means long term, not severe. Although, you can have a chronic illness that is severe, the two words aren’t mutually exclusive!

The three week course is run by the NHS and so the waiting list is rather long. It took weeks to apply, to get an appointment and weeks to be assessed.

The assessment took around 2 hours. The first hour or so was a powerpoint presentation by the people who run the course – Psychologists, Physiotherapists, Occupational Therapists etc.

The 2nd hour was spent with the Psychologist and I have to say, it was the most illuminating and entertaining interview/assessment I’ve ever had.

I won’t lie – my personality is something of a headache for most people and I think I left somewhat of an impression on Andy, the senior Psychologist!

I honestly don’t know how the assessment went – we discussed parts of my personality that probably wouldn’t benefit from being in a group of chronically ill people, because I ‘don’t take fools gladly’ and I struggle with social anxiety. I’ve dealt with my EDS on my own (without any real medical input) for over 10 years, so naturally I’ve built up my own coping mechanisms for dealing with chronic pain.

I do struggle with how to pace myself, so I’m hoping I do get the opportunity to be on the residential course and see if the medical professionals can help me with the things I struggle with – pacing, finding the right exercise for me and sleep issues.

I’ve always had an interest in psychology (although I clashed with my psych tutor in school while studying A Level psychology) so talking to a psychologist was a fascinating experience for me. I’ve never spoken to anyone professionally about my personality issues (I would hazard a guess at Covert Narcissistic Personality Disorder myself) and he did one hell of a job on me! He called my bluff quite rightly, when I said I had low self esteem – and on reflection, I would say I have low confidence, rather than low self esteem.

The one thing he did say was that he found me to be an unusual (rare) chronic illness sufferer in that I don’t ‘live my illness’ – and I agree. We talked about whether or not I used the EDS forums and I explained that I have dabbled but didn’t like the competitiveness of it. I found a lot of people on the discussion boards would list their illnesses like trophies and I wasn’t interested in that. He said I was a ‘role model’ which was perhaps one of the nicest things anyone has ever said to me. I will remember that for a long time to come.

My assessment at Stanmore was on 19th February. I’ve not heard anything back, but apparently it can take weeks for them to make the final decision on whether or not they think the course is for me.

Whatever the outcome, I’m excited to see what happens with it. I’ll keep you updated on any results of the assessment!