Parallel 2017

It’s time!

It’s Parallel time again!

I am so excited to be taking part for the second year in a row. Last year just a few days after Parallel 2016 I was in surgery having some metal work installed to help me put more weight through my right leg.

My wheelchair pushing super hero x

It has healed really well and a year on and I am definitely walking better, helped along by the purchase of a set of smart crutches (well worth the investment if you need crutches but have dislocating thumbs). Long distances are challenging, the fatigue and fainting still need careful management, and stairs (including all curbs, steep slopes and uneven surface) remain my nemesis.

The metal work in my femur bone will likely remain where it is forever, preventing the tumour from fracturing the bone. It is good to know that it can randomly break itself, I have been able to push my strength training a bit further knowing it is secured, but I have had a few nasty falls which is a bit of a nightmare when you are managing EDS, you never know what seemingly minor injury is going to become a permanent ‘problem join’ and muscle fatigue is always much worse after exercise.

So the plan on Sunday is a gentle 1K walk. No pressure, no ruining my careful pacing plan and lots of stopping to rest along the way. I am a bit sad that I won’t be tackling a longer distance this year so I am considering this 1K the start of training for next year.

I can’t wait to meet everyone taking part and enjoy the festival again, I hope I see a few familiar faces from last year at the start line.

EDS life hack #1 – Solving bra related stress

Most of the time I make it to work having showered, clothed myself and even prepared breakfast. And some of the time one or all of these things don’t happen. And then it is rather hit and miss whether I make it in to work at all.

One of the biggest challenges I face first thing in the morning is the complex job of putting on a bra. The other big challenge is reaching my feet to put on socks and shoes, but in my defence, they are a really long way from my hands (I am super tall).

Today I am going to talk about the bra part of this dilemma. If you don’t wear bras then you may not have an interest in this blog, try the post about paddles, it’s got table tennis in it.

EDS and bras do not go well together. Bras are also problematic for lots of people with chronic joint pain, not just EDS sufferers. While I can fold my arms behind my back I find doing up a bra strap really hard. Once you do manage to secure your bra (and your thumb joints) you then have to work out the right fit. The problem is that EDS skin can be very fragile. Any sort of pressure can cause nasty bruising and straps that cut in can leave deep red marks that take days to go away.

I was in Bravissimo a few days ago and had tried on an exhausting 10 bras, all of which hurt or were irritating to my skin. I was about to give up when a member of staff called Cheryl stepped in. I explained the issue I was having and Cheryl gave me what I can only describe as ‘challenge accepted’ face.

It took 2 hours in total and the one of the stores most experienced bra fitters (whose name escapes me but I am so very grateful for her help) and I have come away with some great fitting underwear including a sports bra for Parallel (hooray!).

Following this success I have listed the ideas we came up with, I hope a few of these ideas are helpful:

• Lace- I avoid this, it itches. If I do really like a bra that has lace I make sure it is attached to the outside of the cup and not touching the skin. Often lace can be detached from the cups, so I check how it is sewn on so I can make any adjustments I might want later.

• Painful Seams- Where the straps are attached and the seam right behind the cup have caused nasty grazes on me. Seam free bras are great but I still take time to run my fingers along all the seams of a bra, some brands are better finished than others, once you start looking at them it is amazing how sharp some of the finished edges are.

• Cotton lined- because cotton is lovely and it’s hard to be irritated by it.

• Size-In Bravissimo I went up a size and was fitted on the middle catch so that if I am in pain during the day I can make the back band wider. Bravissimo tend to fit their bras pretty firmly around the back but once the fitter understood what ‘properly fitted’ bras were doing to my skin we had a play with back sizes and found this to be the best solution to avoid pain and keep the support. Having a fitter that takes the time to listen and help you work out what exactly is causing you discomfort is so valuable to getting this right.

• Bagged seams- this is where the fabric of the bra has been turned over to cover any exposed elastic, making the band around your chest a little more comfortable and less likely to dig in. Gossard and Boux Avenue both have bras with bagged seams but there are lots more once you start to look.

• Straps- wide straps without sharp edges are what I have found most comfy. There is also the option of buying bra strap padding, but this will only work under certain clothing.

• Bikini Tops- these tend to have less seams, are made of smooth fabric and are often stretchier than bras. No one is going to know it is a bikini when it is under clothes, and it means you are always ready for the beach. Just in case.

• Bralets- for when the ribs are just too painful for an underwired bra I always have a little crop top thing from Primark that can function as a bra in emergencies, no adjustable parts, no tricky catches. It is not ideal but gets the job done.

Hope that helps, if you have any EDS clothing related tips please do leave them in the comments.

Holiblog! Because relaxation is just as important as exercise.

In less than 1 month I will be racing 10K around the Olympic Park in my wheelchair. I am definitely not ready to undertake this challenge, but I am not worried. Because while I wait for a decision from my medical team on whether I will be sent on a 3 week pain management and pacing education programme, the message is clear: relax, don’t push it too hard and be kind to yourself.

So I am relaxing. Focusing on walking and wheeling short distances and relying on my lovely husband to push me around if I get too tired. He is starting to realise that he needs to train a little harder as he is going to have to push me for at least 5K of our 10K challenge. Fatigue has been a pretty big challenge over the last few weeks but I have been hanging out in a country that has an average midday temperature of 35C, so it is not unreasonable that I would want to nap for most of the afternoon.

Relaxing at C & A apartments

Rather than wheeling myself miles and miles I have enjoyed the use of a fully accessible pool and a fully accessible beach. Yes, that is right! A beach you can go on in your wheelchair.

We have been staying at C & A apartments in the sleepy town of Polis in Cyprus. Chris, the owner, has meticulously designed the resort to ensure that wheelchair users can get around with minimum reliance on family and carers. It is quiet, friendly and 100% accessible. There are no steps, every bathroom has grab bars and wet room style showers, a hoist for the pool is available and an array for mobility equipment can be hired if it is needed.

The best part of our stay has been the visits to Latchi beach. This place is so well thought through. From the accessible parking bays you have to get up a bit of a steep ramp onto a concrete walkway that takes you past the bathroom facilities and cafe towards the water. As you make your way towards the shimmery blue of the Mediterranean there are sun lounges on wooden boards rather than the sand so you can drop your stuff off and pay for an umbrella to buy some shade. Just a few steps from my sun lounger was the Seatrac chair.

Seatrac chair

The Seatrac is a seat that wheelchair users can transfer onto. Then, at a click of a button, the solar powered chair moves into the water. By the time the chair gets to the end of the track you are about waist deep in water. From here we watched countless wheelchair users swim right out to sea, climb on to flotation devices or just sit down in the shallow waves and enjoy the water. The water was clear and we spent a lot of time stalking the brightly coloured fish that swim in the deeper water. There were people using the Seatrac on their own who had to leave their chair next to it and there is not much room so, if you can, I would recommend leaving your chair by your sun lounger (or have someone move it back there for you).

My top tips holidaying in Cyprus for other wheelchair users:

1. Dropped curbs are not really a thing in Cyprus, if there is one someone will be parked in front of it. We just used the middle of the road, this was scary at times. Be really careful at night, people don’t always put their car lights on or indicate when turning. I remain baffled by Cypriot road laws.
2. If you are a manual wheelchair user you may want to consider scooter hire. This place has hills and I appreciate that not everyone is training for a 10K challenge. Scooters are popular in Paphos, everyone has electric tricycles and whizzes up and down the sea front.
3. Nearly all restaurants have an accessible bathroom, even the smaller ones. But it is still worth checking them before settling in for dinner. Some of the doors opened inwards and the cubical would be too small to shut the door behind you while in a wheelchair *Sigh*.
4. It is hot. We put extra water in the holders at the back of my chair and used a scarf to cover the wheelchair seat and arms to protect it from the sunlight and the sun cream that inevitably turned by arm rests a weird grey colour. The metal of my wheel rims got super hot in the sunlight, even though it was nearing 40C I had to have gloves on to ensure I could touch them, my tan lines look interesting.
5. Historic sites are mainly inaccessible.
   

   Lovely lady who showed me how to weave in a village that we passed through on our mountain drive

   We did manage the mosaics outside Paphos but it was hard work and the bumps from the poor paths left me in quite a bit of pain.
   There are some beautiful places to visit in the mountains that you can tour by car instead, we enjoyed driving around the wineries and historic weaving villages. A car is a good idea so you can do this without joining expensive day trips.

 

Helpful links if you are planning  a trip:

http://www.accessibletravel.co.uk/

http://www.ca-tourist-apts.com.cy/

Click to access Info_for_Disabled_feb10_lrg.pdf

 

Identity: The fact of being who or what a person or thing is.

Random Woman (passing by me on the street): Why are you in a wheelchair?

Me: What?

Random Woman: Did you hurt your foot?

Me: No. I have a long term health condition.

Random Woman: Oh okay! I couldn’t tell. I only ask because I am transgender. I find I have to explain that a lot.

Me: *baffled face*

Strange right? Mildly amused I tried to brush off the odd interaction, but it has played on my mind since. Why would this woman see my wheelchair and feel that her situation was something that I could identify with? What do I have in common with this person that would make them reach out like this?

I am becoming used to people seeing my wheelchair before they see me, although it still stings when the first question I am asked is ‘what is wrong with you?’ Dealing with ignorance or outright discrimination is tough, and can take its toll on your emotional wellbeing. But, when it comes to who and what you are, other people’s perceptions do not really matter. I have always felt that the most important thing is how you see yourself.

People do change over time. Changes in relationships, financial circumstances or even the political landscape (just look at how angry Brexit has made everyone) can allow someone’s self-identity to evolve slowly with minimal distress to the person. But when an event (or a series of events) dramatically changes someone’s circumstances in a short space of time they can find themselves feeling lost. When life alters dramatically the constructs that form self-identity can become full of contradictions. All of a sudden your preferences and beliefs stop making sense and you can find yourself without a defined identity. I have found myself dreading meeting new people, hoping they don’t say those terrifying words ‘tell me about yourself’, because I honestly don’t know enough about myself to talk to about me right now.

Facing such a bleak situation, I am finding that I have to let go of the version of me from before. When this happens you have to leave behind the constructs that supported you and the activities that brought you joy to allow a new identity to emerge.

There are very few aspects of an EDS diagnosis that could be described as positive, but as your self-identity is pulled apart you are given the opportunity to put yourself back together deliberately, and more carefully. In allowing a new identity to emerge that is cohesive with how you feel, how you look and how you are now behaving, you also have the opportunity to learn and improve your life and this is something I am beginning to find value in.

While I may look weaker on the outside, I am starting to identify as a person who has exceptional strength. I have learnt to be more patient, with myself and with others. I have learnt to judge less and listen more. I am becoming more resilient and less fearful of the unknown. I am better at finding happiness. I seek it out, finding the friends who are most supportive of an identity that fits my circumstance, investing in the activities and hobbies that work with my new identity and letting go of those that don’t fit anymore.

It is a painful process which is full of grief because I have lost something precious, I have lost who I was. But I feel happiness when I see the strength of the new identity that emerges out of this experience and I am beginning to feel glad for the opportunity EDS has given me.

While my personal challenges do not seem to have much in common with the challenges that a person transitioning genders might face I wonder if behind that woman’s odd line of questioning she was simply saying ‘people don’t see me how I want them to see me either’. I wish I could let her know that you don’t have to like the identity that others perceive you to have, but you do have to like the one you build for yourself.

‘Yey, you are walking’ girl and why stuff like that is annoying.

My husband and I met a couple at the weekend while parked in the blue badge bays at a service station (as one does) who had this amazing tandem racer bike on the roof. My husband started to chat to them, mentioning how cool the bike was, and one of the first things this man said (rather defensively) was ‘well my wife really can’t walk but she can cycle pretty well’. Oblivious to any awkwardness, my lovely husband continued the casual car park chit chat, telling them all about our own love of cycling and what a great activity it is. Listening on I was struck by how quick this guy’s response was. I wondered how many times he had felt forced to explain their use of a blue badge to critical passers-by.

I have seen the spiteful notes that some people feel the need to leave on the car windows of people who ‘don’t look sick’. Perhaps they don’t know that getting a blue badge is not that easy. There are lots of people who probably do need one but simply are not eligible under the current rules. So if someone is using a blue badge it is probably because they really do need it, and why they need is not anyone else’s business. Commenting or investigating another person’s use of a blue badge can leave that person feeling harassed and intimidated.

The public perception of what disability looks like is so strong that when your mobility is visibly impaired you get bombarded by questions and comments whenever you are in public. A few nights back I had the words ‘Yey! You are walking, that’s so great for you!’ said to me by a waitress in the pub. We had never met before. This is the only interaction her and I have ever had. I used my crutches to walk the 10 paces to the bathroom and apparently it was the most exciting thing this member of staff had ever seen. It was an offhand comment, with no thought or malice behind it. A quick reaction to her seeing something that she didn’t understand or perhaps made her uncomfortable. The thing is, I was just trying to enjoy a nice drink after work. I don’t want my attention constantly drawn to my mobility just because it seems novel to a stranger, I have other more important things to think about, like what beer I am going to pick next.

Many wheelchair users do regularly get out of their chair to stand for a bit or even walk around, they are not faking disability nor have you just witnessed the work of Jesus (and yes, both of these things have been said to me, I laughed so hard I forgot to be offended), you are simply watching someone use the mobility they have and then return to their chair when their activity begins to exceed the mobility they have. That’s all. No questions or comments required.

Luck is all you need! Maple syrup and waffles also help.

It was going brilliantly. I completed 3.5K in just 40mins. I was finding myself able to stand a little longer, I felt a bit fitter, perhaps even a bit skinnier! And then I attempted to gently pull myself through the doorway of Café Nero and my thumb did a weird pop thing. I took my gloves off and was pretty horrified to find my thumb at a very odd angle, so naturally I went ahead and pushed it back until it looked sort of alright again. It was pretty painful and just a little swollen. I learnt afterwards that normally it takes a lot of force to dislocate a thumb and the only people who should be ramming them back into joint are properly trained healthcare professionals. Thankfully it seems to have healed okay, it probably wasn’t fully dislocated to start with but that didn’t stop it being extremely painful for a few weeks. I have been warned that because both my thumbs are sitting in a subluxed position anyway (I am told it’s an EDS thing), they may well dislocate again in the future. The hand specialist I saw wished me ‘Good Luck with the thumb!’ and told me to go to A&E straight away if it happened again.

I am a bit worried. It is only 67 days until Parallel, and using a wheelchair with a thumb splint on is not easy, in fact, I am not sure it is possible. The thumb joint is small but it is not insignificant. On crutches half your weight is going through each palm and thumb joint. The same area of the hand hits the wheel rim when you are pushing a chair. I have been worried about the impact on my hips and the ever increasing pressure on my shoulder joints, but I had taken my thumb joints for granted. Silly me. You can’t take anything for granted with EDS. Perhaps this is my warning not to neglect a joint just because it doesn’t hurt yet.

If you ignore the time spent in X-ray departments, I have had a lot of fun over the last few weeks. The lovely husband and I took a trip to Brighton to enjoy sunshine, arcade games and tasty food. After I thrashed him at air hockey (great game that can be played from a seated position but do watch your fingers!) we headed away from the Pier into the Lanes to find some food.

We were a bit disappointed with our restaurant of choice, Food for Friends. When they say ‘Food for Friends’ what they mean is ‘Food for only your able bodied friends’. The restaurant was up steps with no ramp access. We persevered, attempting to squeeze through the doorway at a weird angle until we realised that they also lacked an accessible bathroom. At this point we sulked off down the road and found Pizza Express. I would recommend this place for anyone visiting Brighton, because who doesn’t like dough balls? They had ramp access, great bathrooms and sensible staff who made us feel very welcome. They had no problem shuffling chairs around so I was comfortable and were very patient with my grumpiness at not being able to have lunch at Food for Friends. They also do a still lemonade which is perfect on a hot day when you have sprinted up the promenade from Hove.

It still amazes me how many places are not wheelchair accessible, despite it being the law that business must anticipate the needs of wheelchair users. I have found a few great places that we go back to again and again because we trust that it will be stress and disappointment free. But we do still love finding new places to eat.

We found new place for breakfast last weekend that I can’t wait to go back to. Waffle Jack’s near Wimbledon Chase station caters for all American diner food related needs. You can get cooked breakfast with waffles and maple syrup, really yummy stuff. Despite being a small business their bathroom is accessible and the access is step free. I can’t wait to go back, I really want to try their burgers next!

http://parallellondon.com/

http://www.wheelsforwellbeing.org.uk/

Hand me a paddle, I’m feeling competitive.

This week I found table tennis. This is an awesome game that I am great at! Sort of. Okay, maybe I am not great (yet) but given that it was my first time it did go pretty well. My work colleagues and I headed to Bounce in Shoreditch and I was thrilled to see that they had lift access to the tables and the room was spacious meaning I could get to the bar around easily. The height of the table was just right for sitting with your knees underneath it and from there I could reach most of the shots that came over the net. I highly recommend table tennis for corporate away days, or nights out with friends, it is a really inclusive environment, the game can be adapted in so many ways to make sure everyone can play. It is also great to find a game that indulges my competitive side.

Ping pong aside, I have done fair bit this week, I started Monday at the CIPD Wellbeing Conference in London. A brilliant day that emphasised the importance of looking after people’s health at work, not just because there is a strong economic argument for it (which I may write a separate blog about), but because it is simply the right thing to do. It was great to hear Professor Sir Cary Cooper speak about the huge amount of research that shows how important work place well being is and how much it can benefit businesses.

It was the first conference I have attended on my own in a wheelchair, so it was a bit scary, made worse by the venue’s complete lack of consideration for wheelchair users. Luckily for me I was not alone, another wheelchair user (who was much more articulate and confident than I was) managed to get the point across to the organisers that if a wheelchair user has to be dragged backwards up steps and then has no bathroom access then the venue has no business calling itself accessible. I think they got it.

It is so frustrating to have to check every place you go because they might not have not thought about accessibility before you get there. I had a hair dresser once tell me that they had no ramp because ramps were expensive and they never get any wheelchair users anyway. I did explain that if they spent the money on the ramp then it would probably attract customers who needed it. I didn’t point out that a ramp cost less than a full head of highlights, wish I had now. I do get fed up of explaining these things to places that can’t be bothered to make themselves accessible. Not only does it make good business sense to ensure disabled people can access your services but it is the law. Why isn’t it being enforced?

Despite these frustrations I did have lots of ‘quick wins’ this week, including enjoying a shopping trip to Next in Wimbledon, who have installed an accessible changing room following my request a few weeks back. I also got a call from Café Nero who are installing ramp access at a branch I attempted and failed to visit recently.

In other news, I have started including 20 minutes of exercise into my working day. I go into the office 3 days a week so that is an extra hour of activity every week. Usually my lovely work colleagues will nip out for me around midday grab me lunch, but this week they have been incredibly patient and accompanied me as I slowly wheeled to find myself a sandwich and have been very understanding when I have requested a push back to the office (it’s uphill on the way back, sometimes it’s just a bit much). I find it difficult to ask for help in a work environment, you don’t want people who you know in a professional capacity to feel like they have to care for you. But I am lucky to have good relationships with my work colleagues and there are plenty of people in the office don’t seem to mind at all if I am a bit slow or need help up a curb.

I completed a 2.5K (ish) trip totally unassisted to the gym towards the end of the week, where I did about two thirds of a Pilates class before giving up and lounging around on the mat, making vague attempts to do heel slides whenever the instructor looked my way.

I do ache  after that ambitious amount of exercise but it didn’t stop me heading to Wheels for Wellbeing to do 5K around the track, giving my legs a good workout. 

There is nothing better than a good cycle on a Saturday morning, my lovely husband and I often use the side by side bike and catch up on our week as we pootle around.

Next week I am aiming for a good 3.5K unassisted in my chair, I have just 98 days until Parallel  so I need to get going!

http://www.wheelsforwellbeing.org/

http://parallellondon.com/

Saying goodbye to my ballet shoes

Three years ago I was training for a ballet exam, I spent hours a day in a studio practicing my turns and teetering en pointe. I loved it, I was never happier than when I was dancing. I was a bit old for ballet exams but I was determined to finish the syllabus and get my teaching qualification, I wanted to teach kids with learning disabilities to dance, everyone should get the opportunity to enjoy such a wonderful activity.

Since then my mobility has declined, quiet dramatically really. I went from being able to land a good looking pirouette to not being able to walk twenty paces without a walking stick in about six months. Six months after that I was in so much pain I could only stand for a few minutes at a time and had to spend any extended period of time out of the house, including at work, in a wheelchair. Having previously been diagnosed and treated for Lupus I thought I knew what it was. My symptoms had always been mild and I thought it was nothing that a low dose of steroids couldn’t take care of. But my blood tests all came back clear, whatever was causing my symptoms this time was not autoimmune.

I saw many consultants and took a lot of medication and nothing was really helping. Opinions varied from Fibromyalgia to Depression, often followed by comments such as ‘but it is unusual for Fibromyalgia to cause joint swelling’ and ‘you do seem to be of a cheery disposition, you can’t be feeling that bad…’

In February this year I met a Rheumatologist who explained that I have Ehlers Danlos Syndrome-type 3 (EDS), and that EDS could reasonably explain all of my symptoms. In fact, the previous Lupus diagnosis may have been incorrect too, apparently EDS patients can sometimes show symptoms like Raynaud’s too (a sometimes painful condition where your blood vessels in your hands collapse leading to cold hands and chilblains, even in warmer weather. It is pretty common in Lupus patients).

The realisation hit me that there was no drug that could make EDS go away. It was not going to get better, if anything it was going to get worse. Complicated by a type of tumour called Fibrous Dysplasia in my right femur bone I was stuck with very few pain relief options and very little information on prognosis.

Missing ballet, drinking with friends and generally being a fully participating member of society I have spent much of the last few months feeling angry.

I have felt angry with doctors for not taking my pain seriously, angry with people who offered help (I don’t want help!) angry with people who didn’t offer me help (I really need help!) and most of all I have been angry at myself. I have been angry at myself for not demanding a quicker diagnosis and better treatment sooner, for not being better at my physio exercises and for not being able to meet the expectations that people have of me (both real expectations and the expectations I imagined).

So I have started this blog as part of a process to feel more like me again. The first step is getting myself more active, and finding things to replace ballet (although I still cling to a hope of being able to at least get through some barre work in the distant future). In September I am taking part in Parallel, an inclusive sporting event, and I have committed to complete 10K in my wheelchair. I am hoping to raise money for a local charity called Wheels for Wellbeing, who provide adapted bikes to allow disable people to cycle (they truely are awesome check them out here: http://www.wheelsforwellbeing.org.uk).

It is going to be really hard and I honestly am not sure how I am going to make it 10K without destroying my hands, wrists, elbows and shoulders, but it is probably going to involve a lot of tubigrips. I will be tweeting and blogging my progress but at current speeds I will take about 8 hours to wheel 10K. Worst case scenario, my wonderful (and very handsome) husband will have to push me around the 10K route at the Olympic Park but let’s hope it doesn’t come to that, I am really not a fan of people touching my wheelchair!

Find out more about taking part in Parallel here: http://parallellondon.com/