Tag Archives: Psach

The Social Side of Living with Restricted Growth

16 Jul

Many months ago, I had seen on Twitter that someone else with a growth condition had referenced a paper quoting some research findings about the social experiences of people with restricted growth – today, I finally sat down to read the paper those statistics came from, and so, so much of it resonated with me that I felt I had to write a post for this blog. Not all of the participants in the study that was reported in the paper had Pseudoachondroplasia (a range of restricted growth conditions were included), but many of the experiences described seemed extremely familiar. The paper is called ‘No laughing matter: medical and social experiences of restricted growth’ (Ref: Shakespeare, Thompson and Wright, 2010).

In the paper, the social dimensions of disability are discussed, highlighting issues that people with growth conditions may face beyond the physical limitations often thought of when considering disability. The paper describes how at first sight ‘people with restricted growth do not appear to experience functional limitations, beyond obvious issues of height and reach’, with one participant quote detailing how people assume there’s nothing wrong with her when she’s walking about, but in reality, her hips are really, really painful. This is certainly something I can relate to. Not with my hips (the replacements are still fabulous!) but with my knees, and with my shoulders, and on ‘bad’ days, my wrists and ankles too. I don’t tend to mention the daily pain I get with both of my knees, but taking codeine isn’t part of the average 27 year old’s morning routine, is it? 😉

Further on in the paper, the topic of mental health issues was discussed. Whilst I have been lucky enough not to need anti-depressants at any point in my life, 37% of the study sample had experienced mental health problems, attributed to feelings of loneliness and social exclusion, and to experiences of pain and physical deterioration. I can certainly see how that can happen. I have experienced many lows in life, where I’ve struggled to manage the pain alongside the usual ups and downs of life everyone has anyway. Where I’ve felt that my disability is stopping me from achieving what I most want to in life. I’ve felt the frustrations of not being able to get involved in a variety of social situations – particularly anything sports-based, or even ‘proper nights out’ where I’d need to stand up all night (not that I’d want to do that anymore, I’ve aged too much, but you see my point, these things can bring you down!).  And… where social interactions are a part of life, they’re not always positive ones for people with restricted growth either, which can further contribute to mental health problems. Here are some results from the study participants in the paper:

  • 96% experienced staring or pointing
  • 77% have been on the receiving end of verbal abuse
  • 75% feel the often attract unwanted attention
  • 63% often felt unsafe when out in public
  • 33% have been physically touched by people in public
  • 12% have experienced physical violence

Thankfully, I haven’t experienced all of those issues… but those in red, I have. Staring is almost guaranteed when I’m out in public – I try my best not to let it bother me, but when it’s so frequent, it does become incredibly difficult to sometimes. Verbal abuse – I should probably refer you back to another blog post here; the word ‘midget’ is NOT OKAY. Unwanted attention – yep, lots of it – I don’t want to be the topic of conversation between a group of teenagers in a restaurant, nor do I want to be followed around a club by a creep because I’m ‘so short it’s cute’ (Yes, that’s happened, he had to be removed from the club, as he wouldn’t take no for an answer). Feeling unsafe when out in public? Absolutely. That’s why I won’t go to really busy areas – I’m just not in the average person’s line of sight, and often have to dodge elbows swinging near my face – so busy festivals seem like an accident waiting to happen – otherwise, I may attend one! As for being physically touched in public – yes, that’s happened too. Inappropriately in clubs – “I’m going to pick you up, you’re so tiny!”. In general public spaces – “Can I touch you? You’re lucky!” (what?!). Thankfully, I haven’t experienced physical violence, but as the research shows, and as I’ve heard from others with restricted growth, that’s another social interaction some of us have to ‘deal with’, and we simply shouldn’t have to.

It was just three days ago I noticed myself allowing these negative sorts of social interactions influencing my decisions and choices whilst out in public. I took myself to the zoo (if you’ve never been alone, do!)… but it’s the last week of school, so there were lots of school groups there. I found myself dreading walking through a group of those about 10 years old, for fear of hearing their comments about my height, so I found myself changing direction purely to avoid it. I do tend to avoid putting myself in situations where comments are likely, as it’s easier not to hear them than it is to try and remain positive in the face of these situations.

I suppose what I want to highlight in this post is just that there is certainly more to having Pseudoachondroplasia (and other restricted growth conditions) than the physical difficulties I’ve detailed in most of the posts on this blog. I’ve touched on some of the ‘other challenges’ in other posts (for example, in https://lifewithpseudoachondroplasia.wordpress.com/2013/11/04/true-emotions-self-acceptance/ and https://lifewithpseudoachondroplasia.wordpress.com/2014/10/31/little-things-about-little-me-dwarfism-awareness-month/), but this paper certainly resonated with me, and I’d urge anyone wanting to understand a bit more about living with restricted growth to download it and have a read – there’s a lot more to it than the bits I’ve mentioned here!

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‘Pictures of People with Pseudoachondroplasia’…? Here you are!

15 Apr

‘Pictures of People with Pseudoachondroplasia’, ‘Photos of People with Pseudoachondroplasia’, ‘Photo of pseudoachondroplasia woman’, ‘Adult with pseudoachondroplasia photos’… these are the sorts of things people have been searching for which have returned my blog to them. However, whilst my blog has a number of photos of me, as a child and an adult, I’m aware that there aren’t a great deal of full-body photos, which I’m guessing is what people are searching for – as the effects of this condition aren’t seen in my face! So, I thought I’d do a quick post which should provide something more suited to those search terms…

It’s taken me a while to find these photos, as I’ve always tried to avoid full-length photographs being taken (to this day, I’m not particularly accepting of, or confident with the appearance of my body!)… but here are some, as I was growing up, and more recently, that show you how short I am, how disproportionate my body is, how wonky my legs have been – and are – and how sometimes, following surgery, they’ve been straighter! I hope they’re of use to the people searching for such photos!

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Dwarfism Awareness Month – 2017 (Part 3)

15 Oct

Following on from Parts 1 and 2 of my 2017 Dwarfism Awareness Month blog post (https://lifewithpseudoachondroplasia.wordpress.com/2017/10/01/dwarfism-awareness-month-2017/ and https://lifewithpseudoachondroplasia.wordpress.com/2017/10/08/dwarfism-awareness-month-2017-part-2/), this is the third instalment of my list of ways that I live my life a little differently as a result of having Pseudoachondroplasia.

The focus of the list this week is very much ‘getting dressed’. It seems that just about everything I have to do each morning has been altered in some way to overcome the limitations my body has as a result of pseudoachondroplasia… dwarfism difficulties on the daily!

Week 3:

15. Before I even get to getting dressed, I have to sit down to dry myself with a towel – my balance isn’t good enough to stand on one leg whilst drying the other, as my knees move sideways (inwards). Thankfully, for hotel rooms where there may not be a seat in the bathroom… a toilet (with the seat down!) does the job just fine too!

16. To put deodorant on, I have to crawl my hand up the wall sometimes, to get my arm up high enough. My shoulder is becoming increasingly badly behaved, and painful (it’s one of the joints expected to cause a problem as a result of this condition) so I simply cannot get my arm up high enough without some support any more – the same reason even some of the middle-height shelves in shops are now out of my reach too!

17. For the same ‘dodgy shoulder’ reason, I lay down to blow-dry my hair. I can’t get my arm up without weight in my hand, so holding a hairdryer and holding my arm in the air for some time just is not going to happen! So, I lay on my bed, with my head near the edge – and gravity helps me hold the hairdryer up near my head… my shoulder still hurts, but at least I don’t have to go out with wet hair each morning!

18. Bras. I have to do that ‘do it up at the front and shimmy it around my body’ thing. The movement in my shoulders is so limited that I simply couldn’t reach to do up the clasp behind my back. It’s for this same reason that I have to select clothing with some thought as to whether or not I can do up the zip/buttons on it… any sort of clasp/button/zip at the back of a top or dress, or even one at the side, means I can’t get dressed with ease, so I do tend to stick to ‘pull it on’ stretchy fabrics.

19. If I’m wearing trousers, I have to sit down to put them on (none of this stand and put one leg in at a time thing, not with my lack of balance!), or if it’s a dress, I often put it on by stepping into it, as my shoulders won’t let me reach up to put a dress on over my head. I’m working on the range of movement in my shoulders, but I’m yet to get dressed ‘normally’!

20. On particularly painful days, I cannot reach down to my feet to put on socks or shoes… so I have to rest my feet on something closer to my body and put them on whilst seated. It does mean for people who have a ‘no shoes in the house’ policy, that I will need to sit on your floor by the door before I can leave, as it’s the only way I can get my shoes back on!

21. My choice of clothes is not dictated purely by which I will be able to alter to fit my body, nor by which items of clothing I will be able to fasten easily… but when I’m out shopping – I am very aware of which types of clothing may hide features of my dwarfism that I still feel very uncomfortable about, or which I may want to avoid buying because they put my legs/scars in clear view of others – and I can do without the extra attention! For example, it’s rare that I will wear shorts, or a skirt/short dress without tights or leggings – whilst so many people tell me I should be proud of my collection of scars that cover my legs, as they show what I’ve gone through – I see them as a reminder of my differences, so I’d rather they were hidden as much as possible. And skirts can accentuate my super-curved spine if I’m not careful, as there can be too much of a gap between my back and the waistband of the skirt. I also tend to opt to wear longer sleeved tops, as I really hate my upper arms – they’re short, and bulky (not just because I need to go on a proper diet! but because that’s how our arms are, when we have pseudoachondroplasia). It’s all of these factors that result in me being far from the stereotypical woman… I hate clothes shopping!

 

I’ll post Part 4 within the next week or so, which will contain the remaining few odd ways I alter my life, and some of the more significant, considerable changes I make because I have dwarfism (some of them perhaps my friends may not even be aware of)… showing, as I always try to, that having dwarfism is more than just being short!

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Dwarfism Awareness Month – 2017 (Part 2)

8 Oct

As I said a week ago (lifewithpseudoachondroplasia.wordpress.com/2017/10/01/dwarfism-awareness-month-2017/), for this year’s Dwarfism Awareness Month, I’m listing little ways that I live my life differently because I have pseudoachondroplasia. I posted the first 7 in the original post. So, the next 7, for this week….

8. I open a lot of packaging (including bottles, on occasion) with my teeth… thankfully my teeth seem to take it and are yet to be damaged as a result – but often I don’t have the strength in my hands/fingers to open them the ‘normal’ way! Doesn’t help that my hands are so small, so I can’t get a proper grip around lids!

9. Again because of the small hands – when there is the option, I’ll use smaller cutlery. The average cutlery is designed for bigger hands and makes it tricky to control them! So… if you see me using the ‘wrong’ cutlery in a restaurant for the wrong course, it isn’t just that I’m clueless about cutlery etiquette!

10. I wear shoes meant for children. For girls, or for boys – I don’t really care – but they fit (sort of) the length of my UK size 1 feet. No adults shoes come small enough for these feet… and whether they be shoes for adults or children, none of them are really wide enough as the feet of people with this condition are veryyyy wide – so whatever I’m wearing, my feet have been squeezed in! A small positive of having dwarfism? Cheaper shoes. 😉

11. And clothes… I have lots of them adjusted. From trousers that are WAY too long, to sleeves on jackets and coats which fall way below my hands (short arms, as well as short legs are part of this condition!), I’ve had many trips to tailors over the years! An expensive requirement of living with dwarfism… unless you’re happy to look as though your clothes are drowning you!

12. With clothes in mind! Sometimes there isn’t the time, or I don’t want to spend yet more money on alterations… so I come up with faster solutions! I often roll up sleeves on shirts/tops/jumpers… and have discovered that cutting the ends off flip-flops is a far easier option than trying to cram my wide feet into children’s Summer shoes! Tricky trying to look presentable this way though!

13. It isn’t just clothes I come up with quick solutions for where alterations in my life are required! Sitting at a desk for my PhD research most of the time, I have a chair designed for my body – the seat depth is shorter so that the backs of my knees don’t rub against the seat – the arm rests can be adjusted to be higher so my short arms have somewhere to rest… but if I’m to sit at the correct height for the desk, my feet still don’t touch the floor! There are options for foot rests specifically for desk work, but I don’t use one… stacks of books, or a cardboard box work equally as well – and I’ve been known to use both!

14. This one is probably one of the stranger ones… I have my nails ‘done’ (acrylic nails) regularly. Not because I want crazily long nails, nor because I want them to be glitzy… but because naturally, my nails are super wide (to match my wide fingers), and as a result, are flat. Because they’re flat (without that natural curve of the average fingernail…) when they grow, they bend and look awful. So, whether or not it fools others into thinking the same, to me, with acrylic nails, my hands appear a little more normal. And with the right colour polish, sometimes the nails make my fingers seem a bit longer too (or so I think…)!

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Dwarfism Awareness Month – 2017

1 Oct

Dwarfism Awareness Month… it’s here again! For the last three years, I have written a post for this month, highlighting what living with a form of dwarfism (for me, Pseudoachondroplasia) can be like. Last year, I summarised how my life to date has included a range of surgeries (https://lifewithpseudoachondroplasia.wordpress.com/2016/10/). The year before, I summarised the physical differences that are associated with my particular type of dwarfism (https://lifewithpseudoachondroplasia.wordpress.com/2015/10/). And in 2014, I gave a few examples of how the condition impacts my life (https://lifewithpseudoachondroplasia.wordpress.com/2014/10/). This year, I’ve decided to list as many points as there are days in this month, which highlight the smaller ways that I live my life differently as a result of having pseudoachondroplasia, and once again, demonstrate that dwarfism isn’t just ‘being short’. I’ll post a few each week, updating this post as the month goes on.

So, here goes, Dwarfism Awareness Month – Week 1:

1.I drive distances that the ‘average’ person would walk. Walking long distances causes a whole load of pain, and wears down my joints which will already need replacing at a young age (already have new hips!) – whilst risking appearing lazy to others, driving is worth it, to save the pain! I’ve also discovered recently that I walk a considerable amount of extra steps than a person of average height, over the same distance, as my stride is so small – about an extra 1/3 of steps – great for the FitBit count… but it does mean the pain kicks in after a relatively short distance too!

2. I use deep heat and pain killers more and more frequently, to help with the joint pain that I live with on a daily basis. I try to avoid medication where I can, and cope with the constant ache in my knees and shoulders, but when the pain gets worse – there is nothing else for it! Sadly, paracetamol doesn’t touch it, and I’m yet to find a suitable pain killer that I can take to help the pain, whilst avoiding being drowsy so I can actually function!

3. I sit down at every opportunity. Yep… to keep the pain to a minimum! Walking hurts, but standing still does too – so whether it’s on a chair, a step or the floor – I’ll sit where and when I need to.

4. I have a little stool in my shower – as I cannot balance on one leg whilst shaving the other (!) as my knee bends inwards if I stand on one leg. A simple solution, but a necessary addition to my shower!

5. Speaking of my shower… I often stay in there for an excessively long time. As I don’t have a bath, it’s the next best way to ease the pain in my joints – the hot water works wonders! I’ve also got a collection of hot water bottles and heated blankets for the same reason – heat is the best thing for my knees.

6. Another stool I have in my flat is a step-stool. Without it, I couldn’t reach half of the cupboards, nor close the blinds in my kitchen, or open the highest windows.

7. When shopping in supermarkets, and other shops with high shelves, I have to ask for the assistance of staff/other shoppers to reach things for me. If there isn’t someone nearby to ask, I have been known to climb a few shelves to get things myself…

 

They’re the more obvious things… the more obscure will be added as the month goes on!

 

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p.s. I’d like to also add that if anyone who reads this is curious about anything else that may be different in life because of the condition, or you too have pseudoachondroplasia and think of something I haven’t mentioned, please feel free to ask me to address it in this post as the month goes on! Just send over an email to rubysallen@hotmail.com

What’s Next for the Knees? Nothing (for now).

17 Mar

Following on from my previous post, where I’d written about having had an appointment with my GP about my painful knee – here’s my update…

I had an x-ray done at the local hospital, and the radiographer’s report was that the only abnormality in my knee was that I have osteoporosis (bone thinning).

Feeling unsure of this, as that diagnosis wouldn’t explain the pain I’ve been experiencing, I have also been for a consultation with the surgeon who replaced my hips (as I trust him completely). He too has said that my knee isn’t arthritic to the point of needing replacement yet (hooray!), and that the osteoporosis the radiographer had said was there is actually just localised due to previous surgeries I’ve had. Other operations affected how my bones grew and thus have left them less dense than would be expected in someone of my age. So, that’s all good news. However! Neither of those observations explain the pain in my knee. The consultant has said that he thinks the problem behind the pain is that my patellas (knee caps) are lower than they should be…

Right knee

This, combined with my legs not being straight means that they’re being pulled to one side and this is causing the pain. There isn’t anything that can safely (and with confidence) be done about this, so in essence, I must deal with it and live with the pain. Not ideal. There are positives, as it means I don’t need to take time away from my PhD studies for surgery, and that joint replacement isn’t required as I had feared it may be – but the thought of the daily pain isn’t great.

So, no major news… but this is the update about what is next for the knee, and the answer is, for now, nothing. It’ll just continue to painfully grind inside and pop and click.

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What’s next for the knees?

18 Feb

Since my hips were replaced, I haven’t written much for this blog beyond awareness posts. Primarily because those wonderful new joints have allowed me to live with reduced pain, so I’ve been getting on with life. However…

Over the last year or so, my knee joints – especially the right one – have been getting increasingly more painful. I’ve tried ignoring it. I’ve tried being kinder to it (less moving about). I’ve tried painkillers (paracetamol, ibuprofen…). None of this has worked, and I can’t even use crutches for a while either now my shoulders have decided to join the painful joint club! So, last week, I decided to go and see a GP about this nuisance joint. I’ve owned up that I’m not coping particularly well with the pain (unlike me to be honest about that..) and that I think it needs some attention from a medical pro!

My condition hasn’t been followed up at all since the last NHS surgery was done 6 years ago – and even then, the check ups were just in relation to the frame that had been fitted to my leg. Whether my body needs medical attention has – until now – been left to me to determine. This hasn’t impressed my new GP, who feels that the joints should have been monitored to prevent the pain getting as bad as it has (to the point where I’ve opted to work from home when I can, so I can wrap the knee up in heated blankets or with heat pads to relieve the pain). So, the new GP has given me a prescription for a stronger painkiller for the short-term, but has also sent me to have an x-ray of the knee joint. I have an appointment next week to discuss the x-ray and the next move (which I’m afraid may well be joint replacement – which will be quite something to juggle with my current life plans). The GP has said before this appointment, he will read through my medical notes so he can give the best advice and referrals… this is partially great news, as it means maybe something can be done to reduce the pain, but also something I’m dreading – as once again, this condition has the potential to throw a spanner in the works of my life!

There isn’t a conclusive point to this post… I just thought I’d write it now, so those who read this blog to see what they/their children may face when living with pseudoachondroplasia can follow through what happened and when – as I think this is the beginning of the next joint problem journey!

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