Archive | October, 2017

Dwarfism Awareness Month – 2017 (Part 4)

20 Oct

As the final part of my Dwarfism Awareness Month 2017 blogging, I’m going to list 10 more ways that I live my life a little differently, as a result of living with pseudoachondroplasia… 10 other ways that aren’t ‘just being a bit short’ as many people may initially think is the only difference for someone who has a form of dwarfism. A mixture of some minor changes I make, and some more important considerations and challenges I face, as a way to end the month by highlighting that dwarfism can alter someone’s life in a really broad range of ways… so here goes, the last list of 2017!

22. I operate in slightly different ways when cooking… carrying a pan of water in tiny hands is tricky, particularly when the joints in my fingers and wrist are hurting, so I sometimes have to fill it up and empty it one small jug at a time (or ask someone else to move the pan of water!).

23. Another cooking related one – I’ve been known to take real shortcuts (particularly in the Winter when joint pain gets worse because of the cold, damp weather here in the UK) – shortcuts which mean I don’t have to stand for as long in the kitchen. Ready meals. Pre-chopped veg. The ‘lazy’ options just mean that on the painful days, I don’t have to make the pain worse by standing about in the kitchen!

24. I own a grabber. One of those long stick things, with a handle at one end which can be pulled to grip a claw at the other end… a bizarre item to have about in my home, but it comes in handy in so many situations! Can’t quite reach to re-position curtains if they get caught on the rail? The grabber extends my arms, I can do it myself. Can’t quite reach something I’ve stored on a high shelf? The grabber means I can drag it down myself and it’s one less thing I have to ask for help with. Something has fallen on the floor and my knees are too sore to bend down to pick it up? Use the grabber. You get the idea… it gives me an extra metre or so of reach – and therefore, means I can do a whole range of things myself without having to ask for help! Sadly, it’s no good for changing lightbulbs… I will always need help with that!

25. Much like so many people of restricted, and average, height… I constantly battle with the diet/exercise thing. However, unlike a lot of people who have average bodies, I can’t ‘go for a run’ or cycle, or engage in a whole range of other exercise options to shift the weight. My joints simply won’t take it, and if I push my luck, they can hurt intensely for days. However, with an average sized stomach, I get as hungry as someone of average height. The difference being, they have more height to spread the weight associated with that food quantity across. In essence, I can quickly look very overweight if I eat too much. It’s something I’m currently battling with again – trying to shift some pounds. To look better, to feel healthier, and to be kinder to my joints (the less weight they bear, the less pain there is!). Knowing how many calories I should be eating is a guessing game, even knowing how much I should weigh is a bit of guesswork, as the normal BMI or height/weight charts simply don’t work accurately for someone who is not proportionate in build. So I have to work with what I can see, and currently I don’t like what I see – so I’m trying to do something about it… just slowly, a little at a time, whilst trying not to upset these joints of mine which will soon cause a scene if I overdo it!

26. Talking of things I don’t like seeing, namely – parts of my body, I am forever avoiding full length photographs. I can think of one photo of me where my whole body is in view that I like – all other photos which have my arms, my legs… my whole body in, I can’t stand them. I avoid full length mirrors for the same reason – I don’t like my body, and seeing a reflection or photo of it, to me, is purely a reminder of my short arms, my stubby feet, my wonky, short legs. So please – if anyone is taking a photo with me, if you can remember to try and avoid such photos, I will love you for it. 🙂

27. It isn’t just me I’d rather didn’t have my physical differences highlighted to – I’d rather they were as unnoticeable to others as possible too. Like I said in Part 3 of this year’s posts, I choose clothing to hide my scars, and to try and disguise my curvy back… but I also adjust my posture when I’m around others too. I’ll sit toward the front of a chair, to stop my legs dangling about because they don’t reach the floor so much. I’ll keep my hands out of sight, as I’m aware they look different to the usual delicate hands of a woman. Some of the little things I do I just automatically do now, I don’t have to think about it – but there are some, like this, that I do consciously to try and hide some of my differences.

28. I do a lot of planning. In particular, when I’m travelling somewhere/visiting somewhere new. I check the routes I’ll need to walk to get from A to B, I’ll see whether there are seating options at social venues, I’ll look at all travel options to see which will mean I have to stand/walk for the least amount of time, I’ll even know exactly where I’m going to park if I’m going to a new location that will enable me to be as close as I can to where I want to be before I even get out of the car. People that know me joke that I’m ‘Miss Organised’ – and yes, I am quite the organised type – but in reality, a lot of this planning stems from the need to avoid excessive walking/standing, all to help myself with the joint pain levels!

29. If, as a result of my planning and venue research, I don’t think I’ll be able to do whatever activity/visit whichever place, without needing some help or drawing attention to my physical needs, I do have a tendency to decline invites to places. I’ve avoided gigs at venues where they don’t advertise having seating available. I’ve bailed on weekends away with friends because I know my legs aren’t up to it, and I don’t want to hold them back when I can’t walk as far/for as long, or even for them to have to alter plans to make them meet my needs. I avoid social situations where I just KNOW there’ll be so many people there, there’s bound to be one (inconsiderate) person who feels the need to tell me I’m short/a midget/ask some sort of personal height related question – alcohol fuelled nights out are exactly the kind of thing I dread – there will ALWAYS be questions. Questions to remind me that someone else has noticed my differences, questions that spoil my evening and bring my mood down in seconds, questions that strengthen my disliking of my own appearance. Whilst I hate the fact I still avoid some of the most fun things in life purely to avoid such situations, I cannot always handle the reminders strangers give me, and it seems (at least at the time) worth missing out on the fun just to avoid the comments!

30. Following on from point 29, as something that happens on an almost daily basis, I reckon dealing with comments/questions/staring from strangers deserves a point of its own. Whether it be from a child ‘Mummy, why is that lady so short?’, a teenager ‘wow, look at that midget’, or an adult, without hesitation, looking me up and down with a puzzled expression on their face as I go about my day to day life… or online, on social media/dating apps, where I have continual questioning about whether I am really 4ft 9”? (Why would I make that up?!), or as I recently had, being informed that as I’m under 4ft 10”, I can ‘claim the dwarf label’ if I want. Thanks, rude man! I’m fully aware that I look different, I welcome innocent questions from children (if their parent educates them about differences as a result, rather than encourages jokes about my height… yes, that has happened), but it does wear thin, having to put up with comments/looks from those of an age where it’s no longer acceptable to not be aware of differences/disabilities and act accordingly in your behaviour! I know many people with various types of dwarfism who deal with this daily challenge in a variety of ways, but one thing is for certain – having to put up with this makes us into fairly tough people!

31. The final point of 2017 Dwarfism Awareness Month for me…! I’ve touched on this in a number of previous blog posts, but it is by far the biggest challenge – the life long one – and that is, considering my dwarfism, my disability, in my long term life plans. From planning my career around inevitable surgeries (knee replacements, more hip replacements, possible shoulder surgery…), choosing a house I will be able to move about in day to day, and after surgery, to deciding whether to have children that are biologically mine with or without genetic testing (as there is a 50% chance of passing on my dodgy gene mutation responsible for the pseudoachondroplasia), or to go without children in life/or adopt… everything in my future will have an element of consideration for my condition and how I will be able to juggle the associated challenges alongside the general challenges of life!

The dwarfism won’t go away (sadly!), but far from making me ‘just a bit short’, it does that, and so much more… and I hope that my four blog posts of Dwarfism Awareness Month 2017 have given some insight to those who have read them, about the ways that such a condition can alter someone’s life! As always though, I’ll end this post reminding readers that if you do have any questions related to what I’ve written – or about my type of dwarfism in particular – please feel free to contact me via this blog, or email (rubysallen@hotmail.com) and ask me – after all, it’s an awareness month – a month for sharing the knowledge, so I’d be pleased to receive your messages!

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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

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