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!
x
Life with Pseudoachondroplasia 