Burn baby burn…

So the last four weeks have been a bit unusual for me. Just as I was preparing to enjoy my summer and make the most of the good weather, I had an incident with a hot water bottle that resulted in a pretty horrific burn on my lower back. I’m still not entirely sure how it happened, and why I ignored the dull achey pain I felt (I’m very used to lower back pain when I’m sitting in my wheelchair), but anyway, it was my mum that noticed it, and as it was about 5.30pm on a Friday evening, off to A&E we went to get it checked out.

I was told that the burn was pretty bad, but it would heal, so I had it dressed, then re-dressed the next day, then again pretty much every couple of days for the next two weeks. Anyway, it basically wasn’t healing, or was healing too slowly for the nurse’s liking. So a photo of it was sent to the specialist burns unit, and I was summoned for a consultation. And they decided that I needed a skin graft…oh joy! As the burn is located on the skin very close to the metalwork in my spine, there was concern that the slow healing could lead to an infection, and if the metalwork gets infected then it’s seriously bad news!

Two days later, I was in hospital awaiting my skin graft. We (being me and the surgeon) had decided that a local anaesthetic would be sufficient as it meant that I would be able to leave hospital sooner and wouldn’t need an overnight stay. And as I can’t particularly feel that part of my back I thought it would be a breeze. Huh!! I was so wrong!

I have had quite a few surgeries of the last few years, and people who know me well know that I love a general anaesthetic! I love the feeling of slowly drifting off into a relaxing sleep and waking up when it’s all over. I even usually ask the anaesthetist to inject it slowly that I can drift away for longer… sounds pretty weird I know, but I’ve gotta embrace the small pleasures in life these days! But I hate being in hospital even more than I love anaesthetics, so I found myself lying in the operating theatre wide awake, while lots of people were prepping stuff around me. And I was absolutely terrified!

Unfortunately, it turns out that I can feel a lot more in my lower back than I anticipated. Although I cannot feel skin touch, I can feel any amount of pressure…so for a normal person, it would be like having the skin numbed by ice, so you can’t feel the exact sensation on the skin, but you’re very aware of every little prod and poke. That combined with hearing the surgeon asking for various tools and stating what she was about to do set my imagination running wild with what exactly was happening, and I felt very queasy indeed!

She took skin from a ‘donor site’ also on my lower back, just to the left of my burn, to reduce the amount of dressings I would need and to make the whole thing a bit easier for me recovery wise. And the skin she harvested was stapled on to the burn once she had scraped out all of the dead tissue. If you’re starting to feel a bit ill reading this then I apologise… but I can assure you that being awake while it is happening is 100 times worse!

Anyway…it was eventually all over, and all of the nurses etc were so sweet to me and I was looked after amazingly. I was discharged a couple of hours later on strict instructions to avoid putting pressure on the area. Pretty difficult for someone who relies on a wheelchair and leans back on absolutely everything. But I have been focused on healing in time for my upcoming family holiday to France, and determined that I will not miss out, so that means spending almost all day and night lying on my tummy or my side (but not the donor site side.)

My family have been incredible at looking after me. I have been staying with my parents so that I can be properly looked after, and they have done such an amazing job putting up with me. I had the staples removed on Wednesday this week, and thankfully, the skin graft seems to have taken, and I think I am finally on the road to recovery. I’m going back again tomorrow for another dressing change, but I’m hoping that they will be happy enough with the progress that I will be fine to go away for a few days on Tuesday with my family.

So the last four weeks have, on the whole, been pretty shitty! I am forever going to be so so careful with hot water bottles, and I also highly recommend anyone getting a skin graft to opt for the general anaesthetic, no matter how brave you are feeling. I am hoping that this inconvenient injury will not completely ruin my summer. I was planning to take part in a triathlon in August, but unfortunately the surgeon has told me that it would be ‘asking for trouble’. I am so gutted about that, but I am trying to find something that I can focus on to help me motivate myself through this recovery. Any bright ideas are welcome… I enjoy a good challenge!

Below is a picture of the attractive dressing I have been sporting for the last 10 days… and below that is a picture of the burn and the donor site a few days ago when I had the staples taken out. I warn you, the second picture is not very pleasant to look at, so do not scroll down unless you are prepared. And click away now if you would rather not see it.

Mmmmm..attractive!

Mmmmm..attractive!

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Last chance to look away… I have warned you…

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Ewwwwww

Ewwwwww

Adaptive Yoga with Matthew Sanford

As part of my ‘trying new things’ attitude, I rather spontaneously signed up for an Adaptive Yoga class with Matthew Sanford at Triyoga in Soho. Last year when I had been googling adaptive yoga classes, I noticed that there are loads of classes in America, but there is a distinct lack of them over here. And then I came across Matthew Sanford.

Matthew Sanford is paralysed from the chest down after surviving a car accident at the age of thirteen that killed his father and sister. Twelve years after his accident, he began studying yoga, and today he is internationally recognised as a yoga teacher, public speaker and author. He also set up Mind Body Solutions, a non-profit adaptive yoga centre based in Minneapolis. On paper he is an amazingly inspiring person… in person he is even more inspiring and I feel so privileged to have met him and taken part in one of his classes.

From time to time he comes over the the UK to run workshops for yoga instructors, and this time around he was running an adaptive class as well. I immediately signed up so that I could experience his teachings first hand.

The class seemed to be a part of his 3 day workshop for teaching adaptive yoga to current  yoga teachers. He had obviously spent the majority of the day teaching these teachers, and then they would have a chance to practise what they had learnt with me and the others in the class. There were only a few of us in the class that had mobility problems, which meant that there were about 4 trainee yoga teachers for each of us. I had also brought along my mum and my sister Pip, so there were plenty of people around to help out.

The class was very enjoyable, although I spent most of it in the wheelchair. I would have preferred to have been out of the chair and on the floor, but Matthew was unaware that we were all able to get out of our chairs, so taught a sort of ‘sitting down’ class. He ensured from the very start that we were seated with perfect posture, which involved putting blocks and blankets in place to hold my legs are 90 degrees and keep my back completely straight.

Yoga

As a teacher, Matthew is extremely relaxed and has such a calming presence. He made me feel comfortable and everything he said made complete sense to me. He heavily focuses on connecting the mind and body, and how under-utilised that connection is within everyone. He kept telling me to try and push down through my legs and down to the soles of my feet. When he asked whether I could feel myself doing that, I told him that I can always feel what I am trying to do with my legs, even if no one can visibly see it. He seemed very happy with my response and told me that that is what it is all about; connecting the mind and the body. It doesn’t matter if I’m not making any visible movements, as long as I am connecting and feeling the movement myself. It is quite hard to explain that properly, but he knew exactly what I was talking about.

Yoga

Towards the end of the class I got onto the floor to lie down. I can’t remember the exact reasons for the things we did on the floor, but it was so relaxing and was a nice way to end the session.

YogaI absolutely loved this yoga class, and I think that 99% of that is down to Matthew Sanford’s inspiring presence. He seemed to connect with every single person in the class in a different way. The class was aimed at anyone ‘facing loss, trauma or disability’ so everyone had a different reason for being there; brain injury, spinal injury, amputation… and somehow he managed to teach us all the same exercises but in a way that was specific to our needs and capabilities.

Yoga

Unfortunately his trips to the UK are only for a few days every six months or so, but I will be making sure that I can attend one of his classes every time he is over. And I am definitely now going to read his book (‘Waking: A Memoir of Trauma and Transcendence’). He truly is one of those people that you meet in life and know that you will never forget.

 

 

To all the lovely lovely people out there…

So since I last posted something on here I have had a few more followers and a good few thousand more views on the site… It’s all been quite overwhelming since the article about me was published in You Magazine. My friend sent me a pic of himself reading it…

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My parents, who are undoubtedly my biggest supporters, bought six copies of the Mail on Sunday. I think they are proudly showing everyone who comes through the front door.. They really are the most amazing parents!

My sister had told me sooo many times that everyone reads You mag so I had a sleepless night on Saturday (ok it was more of a sleepless week). I had no idea what sort of angle the story would show, and I actually did the interview for it waaay back in January, so I couldn’t remember what I had even said. But Mary Greene did a fantastic job of capturing my life I think, and I was very happy with how the piece turned out. So thank you Mary for writing such a nice article about me.

At about 7am on the Sunday morning I woke up to a text from my dad saying that he’d read it, and so I went online… I hadn’t seen a proof of it or anything, so I read it for the first time along with everyone else, and I was terrified! And the thing that makes it even more terrifying for me is the ‘Comments’ section underneath the article online…. But by 7am there were already 2 really nice comments from people, and I don’t think I can describe quite how warming it felt to have complete strangers saying nice things about me.

Throughout the day, and in fact the whole week I received lots of emails, messages and comments from people all over the world. I massively appreciate every single person who took the time to write to me. The supportive words from people who don’t know me is so so special and is easily one of the most motivating things I could ask for.

There have been a few negative things that people wrote on the online article, which, although my family keep telling me to ignore, I can’t seem to get out of my head. But I am trying my hardest to block them out and to just focus on the positive and encouraging messages.

So, to everyone that read the article, liked the article, messaged me etc I want to say a massive massive thank you. I wish I could tell you how much it means to me… Whenever I feel a low moment I read some of them back and it lifts me up again! (not sure if that’s quite a narcissistic thing to do?!) But I promise that I will show everyone how much their encouragement means by working my ass off and trying to achieve all that I want to. You might have to follow my blog for quite a while until I get my happy ending… But I know that one day it’ll come, and that I’ll keep having fun along the way.

And in case anyone missed the article, it’s still online….
http://www.dailymail.co.uk/home/you/article-2385412/Life-doesnt-end-dealt-catastrophic-blow-A-young-woman-tells-shes-adjusting-paralysis-life-wheelchair.html

The world through my eyes

I have a feeling that this post is going to sound like a major bitch about the world and people in general, so I want to make it clear that the people I refer to are thankfully just a small proportion of those that I have come into contact with. And I also want to say that I’m not a complete bitch, I think I’m actually quite a nice person (most of the time!)

There are two groups of people that really really frustrate me… People who patronise me, and people who judge me…

The patronising ones
I do not appreciate pity, and I do not like people feeling sorry for me. Yes I had a really shit thing happen to me… And I expect people to acknowledge that when they first hear about my accident. But I don’t dwell on it, so you shouldn’t either. My usual response is ‘Yeah it was a case of wrong place, wrong time, but it could have been much worse’. And I know this sounds extremely blasé, but I’m pretty sure that any other response would make the other person feel quite uncomfortable.

There is a big difference between sympathy and pity. The people that look at me with a sad face, tilt their head to one side and say ‘awwwwww’ need to learn that this isn’t what someone in a wheelchair wants you to do everytime you see them. You can be sympathetic towards my injury and the difficulties I now face without making me feel like some lost, helpless loser!

The other thing that bothers me with patronising people is being applauded for the simplest of things. I’ve been injured for over two years now, so I’ve figured out how to do most daily tasks. So if I manage to go up a kerb or make a cup of tea, I don’t need to be treated like a dog.. ‘ohhh good girl, well done’. Please save the compliments for when I actually do something impressive. It will mean a lot more to me, and I will actually appreciate the compliment!

The ones that judge me
These people are MUCH worse than the patronising people… A lot of the pity comments and looks that are thrown my way come from a kind heart I’m sure; it is just unleashed in a misguided manner. But the people that judge me……. Either they think that it’s acceptable to do it, or they think I’m too dumb to notice that they are.

No one will ever understand what I go through on a daily basis, and exactly how my injury has affected my life. Everyone with a spinal cord injury is different and it affects their life in a different way. Yes I can empathise with other people I know in wheelchairs, but we have all got different problems that have arisen as a result of our injuries. Some people have issues with pain, bladder, bowels, spasms…. The list goes on. I will never presume I know what someone else is going through, so I don’t know how an able bodied person could even begin to comprehend.

For me personally, the worst way in which people judge me is when the question ‘do you work?’ arises. I’m sure even some of the people reading this might judge me for what I’m about to say. The short answer is no, I do not currently have a job. I receive benefits that help me pay my rent and bills, and the money raised from fundraising pays for my rehab sessions. I feel awkward every time I read or hear about people on benefits being a drain on the economy and all of the scandalous benefit fraud stories. It has often made me think hard about whether I should be working or not… But the reality is that I couldn’t hold down a full time office job.

I use office job as a general term for anything that isn’t a manual job, as I obviously wouldn’t be able to do a physical job. So a job at a desk… Well I can’t sit for more than a couple of hours without then having to stretch out, lie down, put my legs up or stand for a while. I get a great deal of back pain when I stay sitting for very long, and the muscles in my legs get very tight and prone to spasms. Humans weren’t designed to be in a seated position, so being in a wheelchair for long periods is not particularly comfortable. It also has very bad physiological consequences in the long run, but I wont go into those now.

As well as this, I also have some bladder issues, but I don’t feel the need to share the exact details of these. But I will mention that people with SCIs are extremely prone to UTIs (Urinary Tract Infections) as well. These are a complete bitch; leave you feeling so run down and often require a hospital stay and some strong antibiotics to clear them up.

So in all honesty I don’t think I could hold down a full time job… And for those people that think I could manage it, please don’t judge me. If you spent a week in my shoes (which by the way are extremely clean and unworn because I cannot walk) I guarantee that you would rethink your opinion. I am in no way work shy… I work my ass off in rehab to stay fit and healthy. I drive two hours to the gym, workout for two hours and drive two hours home, and all at a great expense because petrol and one-on-one training sessions are not cheap. If I could afford to, I would do this five days a week, and that in itself would be a full time occupation.

I’m not even sure why I am feeling the need to keep justifying the reasons why I can’t work, but for some reason I am very very aware of peoples’ reactions when I tell them that I don’t have a job. I will say this though, I do not just sit around wasting the day and my life is definitely not one big holiday. I get up at 6am most days, and I don’t really stop until I go to bed.

I think my rant is over now… As I said at the start, this is not directed at anyone in particular, it is just a general observation from the last couple of years. Anyone that is close to me knows me well enough that they wouldn’t patronise or judge me, or if they have done then I have pointed it out to them (in a nice way).

And I would also like to point out that I know a lot of this behaviour towards people in wheelchairs probably comes from good intentions. I can understand that, but my response would be that I’m still the same person that I was before. My disability is purely physical, so please try your hardest to treat me like a ‘normal’ person.

Taking time to relax

As I have said before, I find it pretty difficult to just switch off and relax. I never really give myself a break and I’m pretty strict when it come to exercising and eating well. I’m really paranoid about the way I look and am very critical about my flaws. I have always been like this, but it seems to be more of an issue since my accident as I can’t blend in so well and always seem to turn heads when I go places.

So recently I have been trying my hardest to just accept the ways things are and to not beat myself up if I decide to chill out for a couple of days. Everyone deserves a break, and I think my weekend off that I had for my birthday reminded me that time off everyone once in a while leaves me feeling extremely refreshed and revitalised.

I spent a lovely couple of days up at my sister’s in London, where I was very well looked after. Staying there massively cuts down my travel time to get to my rehab gyms so it allowed me to workout lots, but to have lots of time off as well. My sister cooked some gorgeous meals for me and I spent a lot of time relaxing on the sofa.

And last week I had the most luxurious day ever. My friend had the week off work and so we decided to treat ourselves to a spa day at a 5 star hotel and spa near where I live. I had been looking forward to the day for weeks and it most definitely lived up to all expectations.

Utopia Spa

There were a variety of pools and hot tubs and we spent the morning going from one to the next. Thankfully they were quite close together so I ditched the wheelchair and just shimmy-ed across the floor!

 

Spa

Spa

We then had a delicious three course lunch. Two courses were included in our price for the day, but we decided we needed dessert as well after our hard work that morning! And of course we had to have champagne with the meal… no spa day is complete without champagne!

Spa

The afternoon was spent in a similar way to the morning, but also included a champagne and food induced nap!

The whole day was absolutely perfect. I completely switched off and felt so refreshed at the end of the day. The spa is extremely wheelchair accessible and the staff were all so friendly which made it an extremely stress free day. Spa-ing in without a doubt my new favourite hobby and I can’t wait for my next spa day.

Happy and Relaxed

Happy and Relaxed

A Very Happy Birthday

This weekend was my 26th birthday and I have to say it was one of the best birthdays that I’ve had. I had a weekend filled with so much fun, and even more food… I feel like it might take me a while to recover from all the food.

I was given so many amazing gifts, cards, cakes and flowers; quite an overwhelming amount actually. 26 isn’t exactly a milestone birthday, but everyone was so generous and I felt extremely spoilt.

Flowers

 

Two of my best friends came down to stay for the weekend and we had such a nice chilled time. They both work their asses off during the week, so it was really nice to just relax and have fun. Fiona’s fiancé made me such a delicious raspberry and white chocolate birthday cake; I thought I was good at baking, but I most definitely need some lessons from Kieran!!

cake

cake

 

The food this weekend has been pretty amazing in general; pub lunch on Saturday and takeaway curry in the evening. And today I had a big birthday lunch thing with my family and a few friends at a Smith and Western. I have never been to one of these places before, but I have to say I was pretty impressed with the food. It is an American style restaurant with a Western sort of twist; the portion sizes are enormous and their specialities are ribs, steak, burgers, nachos….that kind of thing. We all ate A LOT of food, but it was very very tasty, and we had some awesome cocktails to go with it.

cocktailsMy dad was the bartender for the non-cocktail drinkers…

dad

 

For me, the best part about the weekend was that I took a break from everything for a couple of days. I allowed myself 2 days off, and I managed to actually relax and unwind; properly unwind! I am normally quite restless when I’m at home; there’s always some cleaning or tidying to do, or some exercising that I could be doing, but this weekend I put that all to one side. I didn’t monitor everything that I was eating, and I exercised enough to stop my legs from being cranky, but nowhere near as much as I usually would. I could actually enjoy just hanging out in my apartment with my friends and I haven’t done that in a long time.

It has been so refreshing to give myself a bit of a break, both physically and mentally, so a massive thank you to everyone that made this weekend so special for me. I didn’t need any big nights out or fancy restaurants, just some good old fashioned fun with the people that mean the most to me.

After a good night’s sleep tonight I will most definitely be ready to get back to my routine with some renewed energy. I can deal with the pile of laundry and dirty dishes tomorrow, for now I am going to enjoy a nice glass of leftover champagne and a slice of birthday cake while I relax on my sofa. Ahhhhhhhhh!!

 

 

 

 

An Inspiring Day at the Virgin London Marathon

My most frequent emotions are sadness, anger and frustration, but today I felt more happy, proud and inspired than I have felt for a long long time. This is possibly the best I have felt since before my accident. Also, I absolutely never get teary over happy things, and I have never really understood why people cry when they are happy, but right now I am sitting here with a few tears rolling down my face as I think about today’s London Marathon, and in particular two of my INCREDIBLE friends that were running in it.

Running a marathon is not easy! I ran a half marathon while I was at uni and when I got to the end I couldn’t possibly imagine having to do the whole thing again. But a full marathon was something that I always wanted to achieve in life, so two years in a row I applied for the London Marathon through the ballot, but unfortunately didn’t get in. So when my friends Fiona and Clemmie told me that they had a place for this year’s marathon and that they wanted to run for spinal charities I was so proud (and slightly jealous!)

Neither of them are runners, but both are incredibly determined. So they have been training hard over the last six months, putting up with the freezing cold winter and preparing themselves for race day!

Fiona walked a marathon last year to raise money for Aspire (a spinal charity), so she always knew that she was capable of completing the race today. She always knew she would finish, but just didn’t know how long it would take!! Here she is at Mile 8, where I was cheering from. She stopped for a quick road side chat with me and my dad!!

Marathon

Fiona

Clemmie is one of my friends that I never would have thought of as a marathon runner. I don’t even think she could quite believe that she was taking part. When I spoke to her yesterday and she said she was nervous, I told her that it didn’t matter if she didn’t finish. And she said to me, in possibly the most determined voice I have ever heard, ‘Oh I am GOING to finish!!’ She has said all along that I am her inspiration for the marathon and that she’s doing this for me; I don’t think you can get much more of an amazing friend than that!

Clemmie

Clemmie

Both of them finished in fantastic times, and they have each raised over £1000 for different spinal charities. They got their very well deserved medals…

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Marathon

 

The whole atmosphere today was just insane; so much support and cheering. I was in one of the quieter areas, so I can only imagine how crazy it must have been in the central areas. Days like today just bring out the best in people and everyone is so positive and encouraging. It really reminded me of the Olympics and made me feel so proud to be British!

A special mention should also go to Team RST running for the Rooprai Spinal Trust and Spinal Research. This team included Andy Uttridge who is the fiancé of Marrianne, possibly THE most inspiring SCI person that I know, and Andy Galbraith my physio from Prime Physio. I managed to catch a glimpse of Andy Galbraith as he zoomed past (he looked like he was in the zone, so apologies if my shouting and waving distracted you Andy!) and he finished in an amazing 3hrs46mins. He is quite the pro at these sorts of things, and in just less than a month will be completing an Ironman in Lanzarote…in this he will have to complete a 3.8km swim, a 180km bike run and then run a marathon (42.2km) W-O-W!!

Andy is on the left in the turquoise top and shades ...Looking like a pro!

Andy is on the left in the turquoise top and shades…looking like a pro!

All of the runners today have left me feeling uplifted and inspired…but Clemmie and Fiona have really given me a reason to stay motivated. They have achieved something so incredible and the fact that they took part as a result of my accident just shows how lucky I am to have them in my life. I will have to stop writing before I get all emotional again, but CONGRATULATIONS to all of the runners who have raised so much money for so many different charities.