Parallel- Race day!!!

It has been a couple of months since Parallel and I am sorry this blog is so late but I do have a good excuse, I have been in hospital having the Fibrous Dysplasia in my femur bone removed and filled in with bone concrete and titanium. We found out about the surgery just a few days before Parallel but decided that after months of gym work, physio and wheeling around my local park we were not prepared to skip the race, the training had been keeping me going and I had significantly improved my upper body strength, reducing pain in my back and shoulders. It was what gave me the motivation I needed to push through painful and very dull physio exercises, I wasn’t going to miss the best part of all this hard work!

We arrived at the Olympic Park a little late after getting lost and circling the site a few  times but we made it to the start line in time for the warm up. Run by Commando Active, Parallel 3.jpgthe warm up was pretty intense and a bit tricky from a wheelchair. I gave up about half way through and decided to save my energy for the race. There was a lot of excitement and a party atmosphere at the start line as we waited to go. They let the 10K participants go in multiple waves so that there was enough room for wheelchair users to get to the front if they wanted to. We watched those in racing chairs zoom off into the distance as we waited our turn.

The first 1.5 K went pretty smoothly, I was self-propelling comfortably, feeling confident in my jazzy leggings, and then we hit the hills.

The route took us around the edge of the Olympic park and the tarmacked roads
were tough on my wheels. After about 3K I took a break and my lovely husband jogged while pushing me. We also perfected the jogging/wheeling hand hold.

We were lucky that the weather held and the cooler breeze in the second half of the run was very much welcomed.

We had a couple of moments where it got really tough, around 7K I was ready to sneak into the 5K route and head straight to the finish line, but the cheers of the Parallel volunteers and the encouragement from all the other participants kept us both going right up to the end of the 10K.

Parallel 2.jpg

Affectionate and practical, the ‘Jog/wheel’ hand hold.

We sprinted the end so arrived at the finish line absolutely exhausted and massively grateful for the water and snack bars that were in our goodie bags. They also contained some Dove bath products which was a lovely touch, we certainly both felt we deserved to be pampered by the end of the race.

Our time was 1hr 36mins, about 4 hours less than we thought it would take!

Despite there being lots of free tasty goodies around, we couldn’t find anything we fancied for lunch (and I needed some serious food!) so we wandered out to a café and came back to look at the festival later in the day. Luckily I arrived just in time for an amazing Arts Base dance workshop. The class encouraged participants to explore their own range of movement and their excellent instructors worked to help people use their mobility aids to enhance their dancing, it was such a pleasure to watch such beautiful dancers excel in a supportive environment.

Parallel 1.jpgWe raised £920 (and donations are still coming in) or Wheels for Wellbeing. I am overwhelmed by h
ow generous our friends, family and work colleagues have been. Thank you so much to you all for your support.

The best news about Parallel is that it will be going ahead again next year. Anyone can take part, it doesn’t matter if its 1K or 10K, pick a distance and start training now!

http://parallellondon.com/

http://www.artsbase.org.uk/

http://www.commandoactive.com/

Cyprus- where to find all the delicious food.

A few people have asked for more information about places to eat that are accessible near C&A Apartments in Polis, Cyprus. So here is a quick list of places we enjoyed:

Herb Gardens, Polis

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Lunch at the Herb Garden

This is a beautiful place to go for lunch or dinner, and worth journeying to if you are not staying near Polis. The food is good quality and, as the name suggests, flavoured with fresh herbs from the garden. It is a little more expensive than other restaurants in Polis but it is worth it in my opinion. It was quite an experience to wander around the gardens after dinner. The sound of the water features and the scent of lemon balm make it all a bit magical. It also has the bonus of being recently built with lovely smooth floors, great ramps and an accessible bathroom.

https://www.facebook.com/polisherbgarden

Aphrodite’s Rock Brewery

British owned and run, if you are looking for great pizza and a good beer then look no further! The only down side about this place is that it is a way out of town, but it is worth booking a taxi so that you can sample all the delicious beer. They import their hops from the UK and brew a range of beers onsite.

Although I loved the food, atmosphere and friendly serBrewery.jpgvice, wheelchair users should be cautious here and call ahead. They have installed some ramps but the flag stone floor was a little challenging (especially after a beer or two). They do not have an accessible bathroom but I had a discussion with the owner who has plans to install one soon.

http://www.aphroditesrock.com.cy/

Royal Café, Polis

You HAVE to try their burgers, I am pretty sure they are raiding the Herb Garden’s Oregano patch, it was so good. I also had a Cosmopolitan cocktail that took me two days to recover from and the lovely husband enjoyed a giant chocolaty waffle.

The ramp access is around the side of the building and there is an accessible bathroom. Check the bathroom before you order your waffles because it is a bit small and I struggled to get in there in my average sized wheelchair. It is just around the corner from C&A Apartments where we stayed so we were in here a fair bit!

Moustakallis, Polis

Situated in the middle of Polis this restaurant was packed every time we passed it. It was so busy when we ate and they seemed a little understaffed for so many people but they have an open grill and a pretty good house wine so it is worth trying while you are there.

The accessible bathroom is located around the back of the restaurant down a massive hill.  It was something of an odd mystery tour to get to it but the waiter seemed happy to escort me and help me back up the massive hill.

http://www.moustakallis.com/

On the Marina in Latchi

There are lots of restaurants along the marina and pretty much all of them offer outdoor dining and have accessible bathrooms. We didn’t have a problem finding parking within a couple minutes’ walk of the marina. The paving is smooth and there are ramps up to any raised restaurant verandas. Nothing really stood out in terms of the food so I would recommend having a walk/wheel up and down until you spot one you like the look of.

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.FullSizeRender
  • 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.

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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.

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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.
    blog 6 a

    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/

http://www.visitcyprus.com/files/PracticalInfo/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/