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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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THIS is how I feel about Dwarf Actors too.

27 Jan

This is just a quick post, as I happen to have found an article that totally resonates with me. It’s not a recent one, but I have only just found it (via the blog of Lisa Hammond, a British actress who has Pseudoachondroplasia too https://twitter.com/lisahammondwhop) and I could not agree with what has been written by Tom Shakespeare (and said by Lisa) anymore.

It’s an article about dwarf actors, and Tom’s views on this career choice, as a medical sociologist.

I’m not in the acting/film/theatre industry at all, but the following extracts from this article do 100% sum up my view about negative stereotypes being reinforced by the media/theatre/film/etc. and so I thought I’d just paste them onto this blog rather than trying to reword what has already been written perfectly:

 

‘other restricted-growth people’s choices impact on me directly’

‘When people laugh at other characters, like the Principal Boys or the Ugly Sisters, this has no impact outside the theatre. But jokes about the Dwarfs affect the way that the public thinks of people like me.’

‘Despite the differences, I think all restricted-growth people want the same thing: to live in a world where no one is victimised because of their stature.’

‘We just want to have the same range of career choices as everyone else, and to be accepted and respected as equal human beings.’

 

There isn’t much more I can add to this, other than if you have ever wondered why people with dwarfism (including myself) aren’t always impressed by the roles given/accepted by other people with dwarfism, please, just read this, and I promise you, you’ll begin to see why… (thank you Tom for writing this article!) :

 

http://www.telegraph.co.uk/culture/tvandradio/11394321/Its-time-dwarfs-stopped-demeaning-themselves-in-public.html

 

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Dwarfism Awareness: 2016

13 Oct

It’s October, which means that it is Dwarfism Awareness Month again. It’s the month where I like to try and summarise quite quickly some information about Pseudoachondroplasia – the form of dwarfism that I have.

Last year, I summarised physically how the genetic condition has formed me physically – from misshapen joints, to short stature, and an extra-curvy spine: https://lifewithpseudoachondroplasia.wordpress.com/2015/10/09/pseudoachondroplasia-the-low-down-dwarfism-awareness/

The year before that, I demonstrated in photos a few situations where having this condition can make navigating various aspects of life and environments a little extra challenging, and touched on how the disability can make an impact on a person emotionally: https://lifewithpseudoachondroplasia.wordpress.com/2014/10/31/little-things-about-little-me-dwarfism-awareness-month/

This year, I thought I’d try to summarise how living with a form of dwarfism is a life-long thing, which simply isn’t ‘just being a bit short’, as many people seem to think!

Whilst what I’m showing is simply my own experience of how dealing with the condition has interfered with my life, it does begin to show how people with pseudoachondroplasia have to build in time for medical interventions in their lives… and it’s worth noting that there are a whole load of other surgeries that pseudoachondroplasia can cause need for, including some pretty nasty spinal surgeries.

Pseudolifechart.jpg

From the age of 3, when I was diagnosed, I have had many, many hospital/doctor/surgical appointments, with daily injections beginning at 5 years old, and my first major surgery when I was 7. Most recently, I have had two total hip replacements, and there have been various operations between. Next on the list will be a knee replacement, as my right knee is becoming more painful as time goes on (the cartilage is wearing down to nothing).

… And in the future? More hip replacements. Knee replacements. Probably shoulder surgery, with possible replacement. Constant worsening pain as osteoarthritis spoils my joints.

My attitude is just to get on with it; Pseudoachondroplasia is a part of my life and it’s something that I need to juggle with everything else, but I want this post to highlight – for anyone hoping to learn more about dwarfism during this awareness month – that living with a form of dwarfism is not always just ‘being a bit shorter than average’. Dwarfism is needing to adjust life to living with a body far from the average, it is enduring constant pain, it is spending time in hospital, being operated on, and for some, it can also be dealing with prejudice and bullying.

For those who would like to know more about the details of the surgeries I’ve mentioned, how pseudoachondroplasia has played a part in my life, or more about the condition itself… there are plenty of other blog posts for that 🙂 If there are still questions unanswered, I’m always happy to have readers make contact ( rubysallen@hotmail.com or facebook.com/rubysoniaallen ). I’ll try my best to answer anything that may help spread awareness and understanding 🙂

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