It’s been 18 years, of course I’ve changed!

Anyone who’s life has been impacting by a chronic illness knows, as difficult as it may be to admit, that it irrevocably changes you. When I first started to map out this post in my head I was honestly a little too negative in my view of how it has changed me. But since, yet again, I have been stuck at home with another flare up it’s given me time to think of a more balance approach to this question. While the struggle is real and it certainly isn’t a wonderful world of rainbows and butterflies, this experience has taught me so much over the years and built qualities in me I may not have possessed previously.
I may have only been 18 years old when this all started but it very quickly taught me to have strength and resilience and let me tell you that was a bloody tough lesson to learn. In the beginning I was terrified to move, walk, bear weight on my leg and even put on shoes or socks but thankfully my family pushed and sometimes bribed me to get up and walk on my leg. I have to admit I actually walked for jellybeans, oh god the shame. But of course that bribery worked a treat because it showed me that I wasn’t going to do anymore harm to my leg if I used it and that gave me the strength to carry on regardless of how painful it got. I did not want to loose my leg and the fear of that and the resilience my family instilled in me helped me to battle on and no mater how much walking hurts to this day I refuse to give up, even if the wheelchair means I walk a little less.
With that strength and resilience came a perseverance that I had never known and has lived with me ever since. I went to University when everyone was terrified for me to do so, I’ve backpacked round Europe and I’ve have had some fantastic career experiences when many people questioned why I even worked at all given my disability. Who would have thought the girl on crutches could interview rock stars and politicians, be part of transforming a business and travel in Europe to help other companies do the same. I’ve travelled to some amazing and far flung places in Asia. Even though some of those journeys terrified me and I often paid the price with increased pain I don’t regret them for a second. These experiences change you for the better and widen your world view and like my illness have made me who I am today.
That strength and resilience did sometimes come at a price. In the beginning my applications for mobility allowances and disability benefits were declined so I decided I could do this all on my own. And while that was admirable it led to my downfall at times. That determination helped me struggle through university (thanks mum and dad for the taxi subsidies), I was the queen of the free bus service in Manchester but it got to a point where I was house bound because I couldn’t afford Taxis everywhere. Thankfully my GP recognised my low mood and the root cause and pushed me to apply again with his back up this time providing evidence. I received the benefits I had no doubt been entitled to for years and all of a sudden I had this freedom I had never had before. An adapted car gave me independence I hadn’t realised how much I had craved and the Disability Living Allowance allowed me to get the help round the house I had so desperately needed and never wanted to admit. This experience taught me another valuable lesson, trite as it may sound, pride comes before a fall and asking for help is not a sign of weakness but a sign of strength. Having a chronic illness that is a lesson that is better to learn sooner rather than later and it is the one that will be the toughest to stick with. The balance between resilience and accepting help is a delicate one, pride again can often get in the way.
Those early years of self reliance had

some other adverse consequences. I closed myself off to other people with long term illnesses and disabilities I didn’t feel like I was one of them, I wasn’t disabled, right? However I have opened myself up more in recent years since I have finally accepted my diagnosis and everything that comes with it, only took me about 14 years, what can I say I am stubborn. In more recent years as I have opened myself up I have learned more about other peoples struggles with chronic illness and disability and seen the way wider society isn’t as understanding, accommodating and inclusive as I thought it was, even if that was of other people and not myself. It has made me see that I am more tolerant and understanding of others than I realised, I always thought most people saw things the same as me, how incredibly naive. While social media and blogging can polarise opinion I feel it has made me even more compassionate in my world views and much more understanding of other peoples struggles, issues and lifestyle choices. I have been judged, excluded and misunderstood over the years myself and it makes you feel like less of a person and I would never want to be the reason someone else feels inferior or less than their best self. I had my periods when in the early years of my condition when I was bitter about what I had lost, jealous of what others could do, that I could not, and while I am not perfect I feel like my recent mental health struggles have changed me for the better. I’m trying to have a new approach to how I live my life and focus on the positive.

As I mentioned earlier I am in the grips of a pretty nasty flare up again and have a lot of tough choices ahead of me about my career and my rather limited healthcare options and I have decided not to let this get me down. I have a husband who loves and supports me, the best little doggo in the world (in my humble opinion) who keeps me constantly entertained and means I’m never alone. I have an incredible family and group of friends who are here to help guide me through this next chapter and as such my possibilities are endless.

While I am far from perfect in my consistency of this new approach to life I am trying to live a more positive life, focus less on what I can’t do and don’t have and more on what I do. The biggest way my condition has changed me is to be nicer to me, I’m not perfect but I get the feeling exciting times lie ahead for me. For way too long I allowed my condition to change me for the worst whether that is stolen confidence, being scared of failure, less trusting of people and less ambitious. But, that didn’t get me anywhere good so I chose happy, I chose optimism and I chose to live a life where anything is possible. Now I just need to pluck up the courage to go after it, the struggle is real but I’ll get there.

When the drugs don’t work

In keeping with my previous post I am aspiring to care less about what people think of me and be truly honest about my experiences. I have made choices over years driven by my circumstance and a desire to ease my symptoms and in this post I will be brutally honest about the choices I’ve made looking for a magical cure for my condition.

I don’t know about anyone else but I grew up with the naive view that if you are sick, doctors can cure you and make you better again. I kept getting tonsillitis so doctors took them out. If I had an infection I would be given antibiotics. It seemed that whenever my parents took me to the doctors either the advice the doctor gave or medication they prescribed managed to fix what was wrong. So when I was first diagnosed with Reflex Sympathetic Dystrophy and the neurologist told me there was little hope of a cure I couldn’t compute that in any way. How can that be? You’re a doctor, you should be able to fix me. I’m only 18, that cannot be the only answer?
After some initial success from the first nerve block I received, the hope for some sort of cure was sky high every time I was offered a new infusion or drug to take. In the first few years I would have periods of remission, I had time when the pain was almost completely gone, I wouldn’t need my crutches and could go out dancing, go to the gym and not have to worry about ‘managing’ my condition. However, it never lasted long.

I have seen so many specialist over the years that I have completely lost count of the number of second opinions, scans, blood tests, nerve conduction studies, x-rays and MRI’s I’ve had over the years. Since I was diagnosed I have been prescribed an abundance of different medications. God, the hopes I have pinned on those little multi coloured little pills over the years. Would this be the miracle cure I have been praying for? From Gabapentin, Pregabalin, Diazepam, Topiramate, Amitriptyline, Lorazepam, Nortriptyline, Duloxetine, Diclofenac, Methocarbamol and Trimipramine. To the opioids Co-Codamol, Codine, Oramorph, Zomorph, Morphine, Tramadol and Tapentadol. These are just a selection of some of the medications I been prescribed over the years and they all have one thing in common, they never work long term. Coming to terms with this realisation has only been a recent awakening for me. I have always used medication to manage my illness so the concept that medication was no longer working was equal parts terrifying and liberating.

This recognition that the side effects of some of the medications I was taking were causing me a greater level of harm than the benefits or therapeutic effects (if any) I was gaining was hard to swallow. The balance was entirely off. This epiphany forced me to look more closely and another less than desirable coping technique I had turned to over the years. Weed, Marijuana, green, spliff, whatever you want to call it, became my treatment of choice. It always felt like a dirty little secret even though many people in my life knew about it and understood why I did it. Watching me writhing in pain then seeing the impact the weed would have and the relief it would give me. It was hard to argue with the benefit.

However, the downsides to smoking weed started to make me resent it. Like all the drugs I have taken it was never meant to be a long term solution and the negatives really started to outweigh the positives. Firstly I was smoking and we all know the impact that has on your health, so I’ll skip over that because I am not going to be one of ‘those’ ex-smokers. Next there is how it limits and rules how you live your life from waking up and feeling like you need that relief to not being about to sleep without being stoned.

I couldn’t smoke when I was working, couldn’t drive once I’d smoked and I was always worried about where I’d be able to smoke when I was out (it’s certainly not socially acceptable). Of course there’s the legal aspects which made travelling difficult (not exactly flight friendly), plus the impact it had on my mood and motivation, it would slow my mind and would make me an antisocial hermit. At times when I was at my lowest and wanted to pretend the rest of the world didn’t exist it made me numb and allowed me to hide from the emotional issues associated with my illness. It was like a comfort blanket, if I was stoned I didn’t have to deal with what was going on in my life I was in my own little bubble, I allowed that to happen for too long.

Last summer I made the decision that I wanted to focus on healthier ways to manage my illness, not to mention give up smoking! It has been a gradual process and I have in no way nailed it yet. I like to think of myself as a badass in training. I’m more dedicated to my physiotherapy mixed with Pilates, I’m using mindfulness meditation to help me relax when the pain is kicking my arse and I get to sleep when I can’t switch off my brain. The only medication I now take for my legs is Methocarbamol for the muscle spasms and I can honestly say I feel much better for it.

I haven’t smoked weed since August 2017 and haven’t smoked a cigarette since September. The weed was more difficult than the cigarettes to give up but a Medipen CBD vape pen has certainly helped me to cope but, I barely even use that anymore. And as for the evil cigs, Allen Carrs Easyway to Stop Smoking was the answer for me. I’m not going to be smug as it has only been 4 months but I genuinely have no interest in having a cigarette and I have dealt with all the usual temptations and not caved so I remain optimistic that I have beaten it this time.

I only work 4 days a week now which absolutely helps but can honestly say this is the best I have been coping for a long time. Apart from a longer flare up I suffered earlier in the year, since making these changes the worst has been two weeks I had to take off work. Other than that, it has been a few days here and there and I have been able to cope quite well and I do think that the Medipen has played a big role in that.

Coming off the drugs taught me that I have depths of resilience that I didn’t know I had. It has empowered me as I realised that, as much as the weed helped me deal with my pain, in many ways it just allowed me to just hide from it rather than face it head on. I have on occasion craved that feeling of numbness from both the physical and emotional pain. But I can now say proudly that I am a badass, I make pain my bitch, I am a god damn warrior and that’s not because I manage to mask my pain every day and power through no matter what. It’s because I listen to my body, I pace myself and focus on a healthier way to manage my pain. And even when it tries to get the better of me and pull me down into that dark place for fear, doubt and dread, I get back up, I always get my fight back and I never give up trying to live my version of a normal life.

The cost of anxiety

Is anxiety fuelled by perfectionism or does perfectionism fuel anxiety? It’s an interesting question I have been thinking long and hard about over recent weeks. People may see perfectionism as a positive thing, it’s all about success and being great at everything you do. In truth it’s not positive at all, it’s about desperately not wanting to fail or be seen as a failure and that can be incredibly trying. I recently watched The Davina Hour on the W Channel where along with some experts she explored the topic of perfectionism and it really resonated with me. It caused me to be introspective about my own struggles with the topic and how it is linked to my relationship with my illness and resulting anxiety. I am so grateful that she covered a topic that could just been seen as self-indulgent and superficial.

I have always strived to be the best at whatever I do and a need for perfectionism has always dogged me throughout my adult life but, I feel as my illness has progressively worsened as has my need to be perfect. I constantly feel less than everyone else because of my disability. I feel like it puts me at a disadvantage and as such I endeavour to be perfect in other ways. The way I look, my weight, my performance at work and how I present myself to the world has become so important to me and it feels like an anvil I constantly drag around. I care way too much about what people think about me and this has become more acute in recent years. Every unanswered message, invite I don’t receive or post that goes unnoticed has a tendency to impact way more than it should for a rational level headed person.

However, that little voice in your head makes you start to question the validity of every relationship you have. Am I a good enough friend? Do they not want to meet up because I’m no fun? Am I not invited because I’m a burden? Do people just feel sorry for me? Now I know that is ridiculous really (not that I think I’m awesome) but people have their own lives and their own friendship groups. If you feel vulnerable you pull away and retreat into yourself and in an evil twist of fate that can ultimately cost you your friendships in the end. I get nervous about calling people, what to write in messages if I should even message at all. That is not a good way to keep a friendship going.

I am baring my soul through this blog with a view to being honest about the struggles of people like myself with chronic illness. My social media pictures and how I present myself to the world in person, is a different story. I often hold myself back scared of what people may think of my opinion or comment. I don’t try to be funny as much as I used to because what if people don’t laugh. If I am super comfortable with people then things are very different, but in the main I am a little more self-contained than I used to be.

Even at work when I would have previously been the loudest person in the room I try to keep my head down and just do a good job. I just want people to see me in a certain way now; dependable, someone who gets shit done and is all over what she needs to be doing, nothing more. I think the guilt I feel over the time I have had to take off in recent years due to my health means that I am constantly worried about letting people down. I worry way too much about how I am perceived, do people think I am not up to the job anymore? As such I try to over compensate. However, I know I need to keep my work life, and ridiculous need to be seen in a certain way and need for validation separate or that anxiety and perfectionism will cripple me and I’ll be too scared to get anything done. I don’t need to be a superstar employee or social butterfly to be happy anymore. I need to stay grounded, focused on what is important and not be concerned about whether or not I feel like I really fit in anymore. The anxiety monster must not win it’s just not healthy for me.

While I want to feel like I fit in; being seen as an individual is very important to me. I don’t feel the need to be like everyone else, I just like to be accepted for who I am. From how I spend my time to the type of music I listen to and the clothes I wear, I don’t feel like I need to conform. But I think my need to be different is like a blanket of protection. If I’m always seen as a little different then the fact that I don’t feel like I truly fit into so many social groups won’t matter. I engineered it that way of course.

It doesn’t mean that perfectionism isn’t still an issue. When I am not getting any traction on Twitter for my blog and struggling to increase readership I have to remind myself of my motivations in the first place. It was never about that, it was about educating people on the impact of chronic illness, being honest about my experiences and hopefully helping just one person know that it’s ok not to be ok. So screw how many Twitter followers and Instagram likes I have. I remember that way madness lies…

As much as I want to spread the word, break down taboos and help people be less ignorant about both physical and mental health I think the social media aspect of trying to spread the word about my blog is ultimately detrimental. I can berate myself about it; you are not interesting enough, not popular enough or not good enough, but what good does that do. It just feels that like the perfectionist anxiety monster is waging a war in my mind, a war I really want no part of.

Social media and Twitter in particular can be a wonderful motivating place when you are feeling good. I see other bloggers like myself and they inspire me to keep on going but, on days when I don’t feel good the dangerous comparisons start. Look how many followers they have, why didn’t I think of that idea, their writing is so much better than mine. Absolutely bonkers really as we are all individual and facing our own struggles, I have no idea what is really going on in their lives. When those comparisons start though those feelings of failure start to creep in. I have to remind myself I am not a failure just because I don’t post every week or because I only have 36 Twitter followers or because barely anyone outside of my social circle reads my blog. I have to see myself as a success for even trying, for putting my vulnerabilities out there in such a raw and unfettered way. That’s what I am choosing to focus on and to hell with the rest of it.

The comparisons with others and a need for social media validation can creep in to other parts of your life too and essentially it feels rather self-indulgent, lonely and a dangerous path to tread. It can cost you dearly if you already feel vulnerable and like an outsider looking in on the social happenings of everyone else. It can have a detrimental impact on the way you interact with people and how much you put yourself out there. Anxiety, fear and low self-worth can cost you meaningful friendships.

I was on a recent holiday where I should have been relaxed and happy with not a care in the world, but I got a little emotional. After a particularly vivid dream I awoke with a heavy heart, regretful and introspective. I dreamt about an interaction with someone I have lost contact with. I still can’t believe how much a silly dream affected me but it caused me to ask myself some questions. Am I the problem? Did I do something wrong? Did my illness and all the shit that goes with it just get too much to handle? It is quite possibly nothing to do with me at all and they may have a lot going on in their own life. I may never know the answer to those questions and I have to be ok with that.

Now I am in no way saying I don’t have any friends. That would be a particularly woeful and dramatic statement and simply not true. I have a lot of wonderful people in my life whom a treasure and love deeply. However, years of hermit like behaviour, having to cancel plans at the last minute and a genuine fear of reaching out has left me feeling somewhat on the periphery.

You see suffering from a long term illness does remarkable things to your brain. It makes you believe you are a burden, that people don’t think you are as fun as you used to be and that people in your life really don’t want to hear from you. Every unanswered message is gut wrenching, every weekend away, gig, dinner or night out you don’t get invited to vindicates of your own self-doubt and negative thoughts.

I have to take an element of blame in all of this as there are so many people I have lost contact with over the years due to my fear, apprehension and self-imposed solitude. I have absolutely got in my own way when it comes to my social interactions. So to everyone out there who I have lost contact with I can only apologise. It happens to us all in life. People move in and out of our lives at different times. However I am indebted to those who I still have in life, who play such a vital role in keeping me positive, stable and enthusiastic for what life holds next. I have people who encourage me in all aspects of my life and let’s be honest; put up with my woeful moping at times. And we all need that in our lives. Anxiety may have cost me many relationships and achievements over the years but I determined to not let that be the case moving forward. So a devil may care attitude is what I am aspiring to and I’m sure I’ll keep you posted on my progress.

What is a healthy balance anyway?

Writing this blog has been way harder than I thought. Surely this should get easier the more I do it. But, at first when I was writing this one I was utterly euphoric, I would talk about balance and share my infinite wisdom. I loved this and I have totally got it together. But in reality who am I to write about balance? If I had it together so well why would I need to write this blog in the first place? Truth be told I’m a fraud to even talk about this. But maybe that’s why I should share. That sacred search for balance has eluded me for so long now but I never give up trying to find it. Maybe that’s why I should share because I am the eternal optimist when it comes to balance. Forever searching…

I’m just in the throws of returning to work after another period of time off again with another flare up and honestly it’s gut wrenching. All the familiar feelings of loneliness, failure, guilt and disappointment rise up like a phoenix from the flames. I swear those sorts of feelings are like cockroaches no matter how viciously I think I have fought and beaten them, the smallest blip in my recovery allows them to emerge and seek their revenge. It’s a war not a battle. Must keep reminding myself of that… This whole flare up was disappointing as I was back to work full time and I thought I had cracked it and was managing things again, evidently that was not the case.

In some ways that constant drive to prove I am just as good as everyone else along with a need to continue pushing myself to do more in physio was hurting me. All because I can’t give up and be seen to let this get the better of me. For those of you who know me, you won’t be entirely shocked by that statement. But, trying to juggle all of this along with being good wife, friend, daughter, sister and employee, along with looking after the dog and having a life outside of CRPS has made me think a lot about balance.

We all strive for it in our lives whether it be a work/life balance, a balanced diet or even just finding the balance to have time to look after yourself. This is difficult for all of us at the best of times with the pressures of modern life and feeling like we always have to achieve more and be better. Add into the mix social media and comparing yourself to everyone else’s seemingly perfect lives in your timeline and it seems harder to find that balance we all crave.

Self care is the new hot craze and so many people are talking about making self care a priority in order to be better in the rest of their lives. If I meditate and do yoga everyday, eat a balanced diet, educate myself by actually having the time to read then I will be a better person, right? I’ll have more to give to others, perform better at work and maybe even feel altruistic and have more time to volunteer. For those of you who achieve this utopian life style, great for you. For the rest of us it’s an up hill battle for elusive balance to fit in around my 4th coffee of the day and everything else I have to do that day.

Here is the kicker though, how do you find balance when you body is perpetually in fight or flight mode? Seriously? My condition means that my messed up nervous system is constantly screaming DANGER, DANGER. Because, as we all know, pain is one of your bodies defence systems. Pain is your bodies way of telling you something is wrong, but my injury healed a long time ago. Frustrating as hell that my body is still in danger mode.

So, like you, I face all of the usual modern life challenges plus the trying to pace myself and manage my illness. Now in theory it sounds so easy. Plan your activities (boring), take regular rests (when), don’t try to do too much at once (that’s what we all do) and try to manage your energy reserves (eh?).

For those of you not familiar with the Spoonie Theory it is an analogy used to help explain how people with disabilities or chronic illnesses only have a limited amount of energy to get the tasks of the day done before it can start to be detrimental to you. You only have so many spoons you can use in a day no matter how much you have to do. Now you can borrow from tomorrows spoons allowance but that will leave you short tomorrow so it’s risky. Basically our batteries never get fully charged and they are kind of leaky so run out a lot faster too. Think about how crappy the battery on your phone performs when you are desperate for an upgrade and you feel like you are forever charging it, rubbish right?

Well now imagine that the amount of battery you get to use changes from day to day so all that planning and pacing goes right out the window when you wake up with only 10% battery to last for todays activities. Now here is where I want to be crystal clear on what I mean by activities, I don’t mean the big things like taking the dog out, going to work, making dinner or cleaning the house. I mean having a shower, brushing my teeth, getting ready for the day, walking downstairs, walking from the sofa to the garden. I still have to pace even those mundane activities, like having to have a lie down when I get out of the shower or 45 minutes lay on the sofa when I unload the dishwasher.

This is my reality on the difficult days and it is the same for so many other people in a similar situation but, why is finding that coveted balance so difficult for all of us? As boring as it sounds it’s because finding balance takes hard work, commitment and some bloody tough decisions. Those tough decision can be the smaller everyday things like moving to online food shopping (even when you are a control freak), not unloading the dishwasher or deciding you can’t stand in the shower long enough to shave your legs (if you can take a shower at all). To the bigger things like cancelling plans because you know you just can’t manage, not going to certain places with friends because accessibility will be a problem or considering if you need to reduce your hours at work. These are the ones that can really hurt your pride and feeling of self worth.

I have been working on finding balance in my life for the longest time. I do mindful breathing, meditation, daily stretches and physio exercises and try as much as humanly possible to pace my activity without feeling like a sofa slob. I am certainly not always successful in these endeavours and being mentally prepared to prioritise self care is not easy. I want to go to that gig, have midweek dinner out with friends, party at the weekend, do day trips with the dog, have fun with family, go shopping and travel way more. In reality doing all of this while holding down a job and keeping the house in order is just not possible and something always has to give and I invariably don’t always make the smart choice. I try my very best but sometimes life is about having fun and I just have to accept I will pay the price for less than sensible decisions.

For now though my focus is all about doing the right thing. I’m on a phased return at work and I’m struggling even with reduced hours and it’s really disappointing. I have cut back on so many of my out of work activities and to still be struggling is a little heart breaking. However, I refuse to give up and it may take a little time but I will get to where I need to be. It’s a constant battle in my own mind to be better and do better and I will always feel like I am not doing enough. For now I am trying my best to ignore that voice in my head, take it one day at a time and hope that I find that balance I am so desperately searching for. In the mean time I have to forgive myself for not being perfect, accept where I am in my life and know that change is absolutely certain try as I might to control everything.

why so weird?

First of all let me apologise that I haven’t posted in a few weeks. That old flare up beast has reared it’s ugly head again and so brain fog has had the better of me. But, I am already working on a few other posts it is just taking me a little longer than usual to write them at the moment. This post is a little different to the others and I try to deal with some of the more awkward situation I have been experiencing now I am replying on a wheelchair more. Being so honest can have consequences so I hope it doesn’t offend anyone, I am very much trying to highlight issues rather than criticise.          

I say this with the greatest respect but when you start to spend a large proportion of your day in a wheelchair, you start to notice how bizarre the rest of the world can become towards you. My friends and work colleagues are brilliant and have never treated me any differently. They are helpful, considerate, compassionate, understanding and willing to laugh with me about all the silly stuff like static shocks from my chair. Van der graaff hair is not a good look. 

Not everyone finds it so easy to just be normal. To the people at work who used to say hi to me in the corridor who now all of a sudden overt their eyes as if looking me in the eye or acknowledging my existence may turn them to stone. I am not medusa! Or the people who feel it is now wholly appropriate to start touching my head in a sneak attack from behind because all of a sudden it seems at such a convenient height for them to just reach out and have a good hair ruffle. Then there is the shoulder massages from strangers in the lift and people leaning on my chair because you know standing with those working legs is just too much. And of course the holy grail, trying to push me out of the way while I am in my chair. Let me be blunt, none of that is cool. None of it.

Don’t even get me started on the minefield of accessibility issues I am now facing, having to ask the world and his wife for help reaching items in the supermarket and the impact it has had on my wardrobe choices. Bye, bye above the knee skirts, it was nice knowing you.

But todays post isn’t about these issues, granted they are topics I may delve deeper into at another time, today is an appeal to the parents of young children. Please stop being so weird! Now that may sound like a generalisation and for that I am sorry. Of course not every parent is weird with me and my not so nice experiences are rare but still significant.  I am also very fortunate that my friends with children are fantastic, I cannot fault them in any way. Their kids understand that my legs don’t work properly and far from being awkward around my wheelchair they think it’s fun. They like to push me in my chair (I am not adverse to child labour) and want to sit on my knee, they love it rather than fear it. My friends little girl Alena will run after me with my crutches if I have forgotten them, “Nat you forgot your sticks!!”, too cute. For the understanding they have given their children I am eternally grateful and I know they will all grow up to be accepting and inclusive adults.

However, that kind of understanding and inclusive attitude isn’t always my experience. We already live in a world where too many people have a warped sense of what disability means and we don’t need to raise another generation of people either awkward and scared by people with disabilities or feel it’s ok to openly gawp for uncomfortably loooooong periods of time. In a society that is becoming more and more marginalised by politics, religion and race surely there must be one area we can make some satisfying changes for the better. Has the Paralympics taught people nothing?

More and more we are starting to see people with disabilities represented on our television screens as presenters and characters, thank you Channel 4 and BBC for shifting the tide. The Last Leg has done incredible work in normalising the conversation about disability. And even better than that they are actually showing how we can laugh about these issues too and since comedy is always my go to approach to make things less awkward, I love it. But this is only a small glimmer of hope in a world that other wise makes you feel like you don’t matter and you aren’t part of it. Where is my disabled emojis? Where are women in wheelchairs in fashion? Where are people with disabilities in adverts?

But back to my plea to parents, the reason I feel so passionately about this issue is that it doesn’t just relate to my time in the wheels of steel. I have spent the majority of my adult life using crutches and this sort of behaviour was just as prevalent then. I have lost count of the amount of times I have been out shopping and watched parents either hurriedly shoo their children with legitimate questions away from me putting the fear of god into the poor child. Or standing with their child pointing and gawping. It’s frustrating, humiliating and lets be honet here, it’s helping no one.

As bizarre as it may sound I would much rather that inquisitive child had the opportunity to know that people with disabilities are not members of a freak show and they are not to be feared. And guess what you can actually talk to me. Yep, to all the people who talk to whoever I am with rather than me when I am in my chair, again, not cool.

Instead of all of that b*llshit I have a few radical ideas. Please have the decency to talk to me directly.  Scary I know.  But everyone deserves respect. Even more than that I implore the parents of those inquisitive young kids to approach me and allow your kids to ask those awkward questions you are too afraid to ask. Be polite and ask if I mind of course, but lets help the next generation to start to end the awkward. Teach them people with disabilities are ‘normal’ too, that it doesn’t define them and is just another aspect of our life. 

And to the gawpers out there. Come on you know better. I know curiosity is a natural human emotion and we all suffer from it but please try to refrain. And again rather than allowing your kids to do the same, have the difficult conversation with them and explain to them why that isn’t polite and help them come to realise I’m just as ‘normal’ as them, I just need a little extra help getting around.

I hope this is taken with the spirit I intended which is just to highlight some common issues that I know many more people must deal with. I have no desire criticise anyone I know we are all trying to do the best ywe can at the end of the day. I admit it is awkward. I cannot in any way claim that it’s not. However, the only way we can make it less awkward is to normalise these conversations and why not start with the next generation and create a less awkward, compassionate and inclusive future for us all. 

Scope have done an incredible campaign so if you want more information of how the end the awkward please have a look  they have some brilliant advice and informaive articles

Life through a different lens

Since I have been procrastinating over this blog for so long there have been occasions where I have plucked up the courage to talk about my little idea. One such occasion was weirdly enough at a work Christmas night out with Ste who had joined my team during my long spell of absence last year. We ended up hitting it off really quickly that night and both spoke our personal journey’s to where we are now, clichéd I know. As well as our mutually sexy careers in continuous improvement Ste also had his own photography business. We joked that if I did start my blog he could help me out with some pictures. No blog is complete without good images or so I am told. 
I’m sure he left that conversation with a similar view point to me, such a nice idea but it will never happen. But once I had my first few posts under my belt (unpublished at this point in time, lets not get cocky) I plucked up the courage to bring it up again with Ste. Luckily he remembered our conversation and was immediately interested in working with me on what felt like a vanity project at that time. I was honest about were I was and didn’t relish the thought of having my picture taken but Ste reassured me it would all be ok and he would look after me. I also knew there was only going to be a short period of time I could get away with using old Instagram pictures for my posts. 

We picked a date and studio for the shoot and discussed ideas but as the big day approached I realised just how nervous I was. I ultimately had to ask myself why? I take daft selfies and post silly pictures with friends but this was different. The thought of being alone in front of a camera with someone else editing the shot terrified me. I think it is the vulnerability of it all, even with an inch of make up and my favourite clothing armour I would be totally alone and not in control.  Plus in a very British way it felt like a really self indulgent and narcissistic thing to do. Ooooh look at pictures of me, utterly ridiculous.

The shoot itself went well, Ste and Rich worked so hard and did their best to put me at ease. Afterwards I told my husband it went well but I knew deep down inside I was disappointed at how I had done, but that just tends to be my default position, overly critical. Ste did a fantastic job with his fiancé Rich setting up interesting shots and trying to get me to come out of my shell and they seemed really happy with what they were getting.

No matter what though, there was just a little part of me that couldn’t let go and be totally comfortable. I couldn’t be myself, I kept over thinking it and holding myself back. I could beat myself up about this for weeks on end and wish I had done it differently, allowed myself to have more fun and be more creative. I can wish that I’d done better for Ste and Rich who took the time to help me out, but what would that really achieve?

The other option is that I can choose to learn from this experience and take something positive out of it. First of all, I actually went through with it even with the level of anxiety I had coursing through my body. I’m at a point in my life where I am learning to like myself again. My confidence has been obliterated over the last year and I have had a fight on my hands just to feel comfortable in my own skin again. Chronic pain does that, it has the ability to suck the life force out of you, leave you feeling broken and worthless. It feeds this voice in your head that tells you “you aren’t good enough, you’re a burden, you’re ugly and you can’t achieve anything so why bother trying.”

Last summer I officially hit rock bottom and I was luck enough to recognise where I was. The doctor telling me that I was suffering from anxiety and depression wasn’t a great shock but it still felt overwhelming. I was annoyed at myself, I had been dealing with this illness for so long so why wasn’t I coping better? Why had it all caught up with me now? 

Very soon after that I was attending the weddings of some of the nearest and dearest in my life. Two weddings in two different countries over two days, what a challenge that was already and add to that my level of anxiety and self hatred. It made for a potent  combination. Looking back now that whole time was like having an outer body experience. I was there in body but not in spirit. I didn’t want my picture taken, I didn’t feel as sociable and I was having panic attacks it was so tough. I was skin crawlingly uncomfortable and for anyone who knows me, socially awkward is not how you would normally describe me. I normally relish catching up with people but instead I was kind of rude and didn’t really want to talk to people and explain to them what I was going though health wise at that moment in time. In all honesty I was terrified if people asked me too many questions I may have a break down right in front of them. I kept that kind of behaviour behind closed doors when I could.

I have a long way to go but I am making good progress and even now as I am writing this I am flying to a friends wedding and my level of anxiety and trepidation is no where near as bad. There’s no sense of dread or foreboding, I’m not terrified to see people and I don’t have the urge to turn around the plane and get back to my happy place at home with my pooch.  The thought of pictures still makes me feel uneasy but I am going to make a big effort to document the celebrations and not avoid the camera lens.

Wedding photo. I did it!

Getting back to my photoshoot, I may hate the way I look in some of the picture but that’s my issues and nothing to do with the pictures. I also do think that the time with Ste and Rich has helped a little. It’s made me realise what I would do differently next time (lesson learnt) but, it has also given me a little spark of confidence. Surprisingly enough not all of the pictures where hideous. Some of you may think I am being ridiculous even saying that but that is how I genuinely feel. This is not about fishing for compliments to boost my ego or looking for validation because being truthful it barely even permeates my armour right now anyway. People could give me all manner of compliments and I just can’t compute them, I can’t take their words on board. However, I’m working on it and hopefully soon someone will tell me I look beautiful and I will feel that way too. Until then I will smile politely, thank them for their kind words and try not too look too bemused. Because after all, we all have periods in our life when we don’t feel good about ourselves and I know I am not alone in my struggle. I just pray for the day I wake up look in the mirror like the person I am. 

Looking back and feeling grateful

When I first started to write this post I had decided to talk more about how my story began. And while I do cover that subject matter, my mind very quickly began to ponder the impact my illness had on those around me while I was recanting those early days. I guess it would be incredibly naive to think I could talk about those early months without mentioning those who played such a vital role in my life a that time.

In my haste to get my first post off my chest I wrote all about my motivation for doing this but I didn’t actually take the time to introduce myself. My name is Natalie and I am 35 years old, married to my husband of 4 years Michael and proud mother to our fur baby Layla, my doggy saviour.

As you may have guessed from my first post I have a long term chronic illness, Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). The condition affects both of my legs and means that I rely on crutches and a wheelchair. As with so many of these stories it all started in the most  innocuous way. I was 18 years old in a nightclub after a friends birthday party when someone stood on my foot. Nothing unusual about that, happens to people all the time on a night out. However, the end result for me was a little more serious than finding a bruise you don’t remember getting the next morning. 

It wasn’t until the next evening I realised  something just wasn’t right as the level of pain I was in for the really minor injury I received just didn’t seem to fit. But, after a trip to A&E I was told it was nothing more than a sprain and sent on my way with a bandage and walking stick. I persisted for a few days sure it was nothing serious. I was 18 years old nothing bad could ever happen to me, I was invincible. Then in an evening I remember all to clearly I realised something much more sinister was afoot. While working at my glamourous teenage job on the McDonalds drive thru this pain so intense came over my right leg that it completely panicked me. It was like my leg was burning from the inside out and all I wanted to do was rip off my trousers.  I remember stumbling down the corridor of the Drive thru window desperately looking for Michael and then collapsing in the kitchen. Still to this day that night gives me chills, my entire life changed, it just took me a few months to understand exactly why.

It was approximately three months before I received my CRPS diagnosis, really quick compared to many other people’s  experience. It felt like a lifetime to me though. I was studying for my A levels, was destined for university to study my dream degree course and I was really active, I loved to dance. 

All of a sudden my life was turned upside down. I was in so much pain and drugged up to my eyes balls and no one seemed to understand why. Doctors were either completely baffled by me or told me it was all in my head. It wasn’t until my desperate parents almost had a break down at the GP surgery that we finally got a private referral to see a neurologist. 

Finally, he gave us the answer we had searched for, unfortunately it wasn’t the answer any of us had hoped for. There is no cure for this condition and it could have long term consequences. That was terrifying to us all.

In the beginning there was hope, we had caught it earlier. Spinal nerve blocks may help reboot my system and everything would be fine. The first was successful, although sadly the relief was short lived. The second then made the pain spread up my leg. More blocks followed and every time I put all my hopes into it’s success. Finally BUPA informed us there was nothing more they could do for me and that NHS pain management was my best option now. It was devastating, what would I do with my life now?!How could I continue to live like this? My whole world and my future were falling apart and I was a complete mess. I didn’t cope well.

While this was a tough time for me, looking back, it’s my family and what they had to endure which hurts me the most. My parents were utterly helpless, all they wanted to do was take away my pain and there was nothing they could do. I still to this day don’t know how they kept it together. They never let the strain show, they were my foundation, biggest cheerleaders and did everything humanly possible to lessen my pain. If I was to even just calculate the money they have spent on a myriad of alternative treatments over the years it would be a staggering amount. And as much as I appreciate all of that, it’s the nights they just held me as I sobbed and listened to my frustrations and fears, that’s what means the most to me. They never let the mask slip. Everything was going to be ok. That message has never changed and they do more for me than I could ever repay them for it’s just that our expectations of what ‘OK’ is are just a little different now.

Then there is my younger brother Damien. Only 13 years old when this happened and his family life was irrevocable changed forever. He never once complained in front of me even though so much of my parents time was taken up caring for me. I still remember him making me my favourite loaded potato skins and having a carpet picnic with me in my bedroom because I couldn’t get out of bed after a procedure. Even with his good grace I still have an overwhelming sense of guilt, I stole part of his teenage years, I gave him a bigger burden to carry than he should have had. I know the situation really upset him at the time. Seeing me in so much pain was too much for him to have to deal with and for that I will always be heart broken.  

Then there is Michael. At 19 years old and after only 6 months of dating all of a sudden his girlfriend was seriously ill, that’s a lot to deal with. We had a whirlwind romance and knew we loved each other very early on. We were so happy and planning for a life together. Hoping to save him from guilt and further upset my parents gave him an out, took him to one side and told him no one would blame him if he just walked away. It was too much and he had his own future to worry about. There would be absolutely no shame in leaving me, they would look after me. 

He was stoic and determined. He was staying right by my side and no one could tell him other wise. He was and still is my rock and my everything. It’s been 17 years now and we are still here fighting the good fight. Facing every challenge my illness throws our way. I can’t for a second imagine doing this without him. He pushes me to do better and be better, to keep on fighting and not give up on our future. I need that so much from him and I often lean on him too much. But,  he never judges me, never shames me for my emotional turmoil, makes me feel brave and pulls my focus back to what’s important, you can’t let ‘it’ win. 

My support system has widened over the years and I have so many people who play a vital role in my life and I will without a doubt be writing about them all at some point. But, for today, I will leave my story there. Thankfully my parents and Michael were right. I need to keep on fighting the good fight. And while our expectations are different, every fierce battle and bump in the road is just a semicolon and in no way a full stop. There is still plenty more story to tell. 

Into the abyss…

wp-1489853831375.jpgSo here goes nothing my first ever blog post. A very predictable start to someone’s first post I know but I genuinely mean it. “Here goes nothing” really has to be my philosophy. No one (bar my close family who may feel compelled to do so out of curiosity) may ever read this post and I have to be ok with that. Approval from outside sources cannot be my motivation to share my experience, I must look at this as a purely cathartic exercise. If not madness this way lies.
I, of course, have other motivations for sharing my journey of almost 17 years. I want to break taboos and make people feel comfortable about talking about the impact of long term chronic illnesses and disability. I want to be brave enough to give a voice to those who feel like they aren’t quite ready to articulate their experiences. And lets be honest it’s taken me near enough 17 years. In addition I want to enlighten peoples thinking and allow them to see people with chronic illnesses in a different way. Our days on the sofa or in bed are not about laziness, it’s more like self preservation and recharging those leaky batteries that never seem to reach their full charge. These laudable ambitions are absolutely right, but, do I really have the force of will to take on such battles?
For now, none of that is important. This is selfishly about the cross roads I have now reached. I no longer want to feel like a victim, to feel held back by my situation, to have my self worth ravaged by something I can’t control. Admitting that is hard enough but committing to openly share all of that is damn terrifying.
I knew I wanted to write about this at the end of last summer. Previous to 2016 I felt like I had a semblance of control over my condition and life was humming along nicely. Then in 2016 the monster inside of me decided that enough was enough and it was coming back with a vengeance. It wanted to spoil my fun and remind me you are not normal (who is). Pain is all consuming and will take you down with it and most importantly, you are sick and don’t you dare forget it again.
I agonised for months about whether I could really commit to writing about this. I knew I wanted to and in fact thought it could be really good for me. But fear had me stuck. By October I plucked up enough optimism and guts to commit to purchasing a domain name and blog hosting. Robot in heels was born. But lets not get ahead of ourselves here. That was just the first hurdle. I planned ideas for content even set up a social media account for my new alter ego, the problem was I just couldn’t bring myself to write. The act of making myself really be honest and sharing that with others in the written form had me frozen in fear. So I made every excuse under the sun as to why I hadn’t yet published, but in truth I was just plain petrified. Fear of failure, ridicule and having people know I wasn’t so perfect and really wasn’t coping, it was just too much to bear.
As the months have gone by I have made it back to work and while this in itself has caused melt downs, sheer inexplicable hatred of myself, panic attacks and a bottomless pit of self doubt. It is also starting (slowly) to give me my confidence back. And with that glimmer on the horizon I decided to jump in feet first and just do it. What’s the worst that can happen, right?
In my own head (where the rational and irrational are waging their own war) I have come up with every possible criticism that could be thrown my way, every way this could go horribly wrong and yet I am doing it anyway. Why would I risk the possibility of putting myself through that? It’s simple really. It’s time to reclaim my own narrative. Time to start to regain control of my life and start living openly rather than existing in exile. But more importantly I have realised that I need to be bold enough to start taking some risks. I am only going to regain my confidence, my feeling of self worth and work towards becoming my former self if I stop being so scared of failure and start to takes some well calculated leaps of faith.
So into the abyss I go. Full of trepidation and hope that this will allow me to start to regain control and start taking affirmative action to better myself. If the last 17 years have taught me anything it’s that no one else is going to be able to fix me physically or emotionally. That’s a very difficult thing to admit as we all look to others when we are hurt whether that is our doctor or loved ones. I’m an unsolvable puzzle to my doctors (try as they might). The drugs don’t work and no operation can fix what’s broken. As much as I desire a pill that will take away the pain and allow my brain and my legs to be friends again, that ship has sailed. I finally know that and strangely that’s ok. I have fearful moments about what the future holds for me but I can no longer allow that to consume me. That’s where the work on the mental health aspects of my situation starts. It’s not about admitting defeat or giving up hope, quite the contrary really. Having that sense of conviction that I can’t fix my legs but I can fix my head is empowering. And this is where my new start really begins.
I promise to myself to use this platform to document this next chapter, my mental as well as physical struggles. In doing that I can start to change peoples perception of me and even greater than that hopefully , ultimately, change my perception of myself.

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