Recently I’ve had a lot of questions from friends, colleagues and spoonie’s alike about my mobility aids. From how I started using them and accepting them as part of my life to why I do, or don’t, need them from one day to the next. I hope this post gives you a little insight into what it’s like to have a variable chronic illness and the love/hate relationship I’ve had with aids over the years.
Firstly, I want to talk about how scary it can be to start using a mobility aid, especially when you’re young. I’ve always found that there’s a preconception that aids like walkers and walking sticks are just for old people. So that can be really daunting. I went to an event when I first got my walker and had to leave it with loads of identical ones I saw countless old ladies park in the same spot. That’s the main reason I decide to decorate my mobility aids. When people comment on my sparkly walking stick I always say, ‘Well, if you’ve got to have it, it may as well be pretty’. My first piece of advice to anyone worried about getting a mobility aid and being too scared to use it, because they think they’ll be stared at, is to make it your own. I went through a stage when I thought I shouldn’t be using my walker because I ‘didn’t need to’ despite the fact it’s always helped me so much. So, having already covered it in Zebra tape, I covered the seat with stickers of all of my favourite things so every time I was using it I felt happy and this managed to fight off the cruel voices in my head that were telling me I was ‘giving up’ by using when actually I was making a sensible decision to help myself. Loving your mobility aid and knowing how much it helps you and the reasons you use it will give you so much confidence that it really won’t matter if people are looking.
Now a lot of people get confused when they see me in one place and my mobility aid in the other. Just like when an ambulatory wheelchair user gets out of their chair and everyone either shouts, ‘It’s a miracle’ or ‘You’re a fake’. Neither of these statements are true. I’m going to explain some of the reasons that I use different aids for different days and why sometimes you’ll see me with no aid at all.
Wilhelmina the Walker
I bought Wilhelmina off an old man on facebook for £10 because I didn’t want to pay out loads for a walker (becuase they’re expensive) and find that I didn’t like it. Of course, It was amazingly helpful and, despite having no brakes, she has done me very well ever since. I even tried a posher walker that was left to me but just didn’t get on with it half as well. A Walker is useful for so many things. Not only does it support me walking on days I’m really struggling with my pain in my legs or knee subluxtions but it also helps me carry things from general handbags to suitcases to laundry to big speakers and cables. This means the pressure is off my shoulders. Mine also has an in built bag so I can take my heavy water bottle around with me with ease. It also means that I have a seat with me wherever I go which can help with my POTS symptoms, especially in queues, and gives my legs a rest. I mostly use it for big days out such as theme parks or the zoo, but I also used it around uni a lot for general tasks- mainly carrying my books, laptop and laundry. It can be difficult to use when a place isn’t very accessible and/or when I’m having trouble with my shoulders as I can’t take the weight on my arms.
Cecily the Stick
My lilac mermaid sparkly stick was a steal from amazon warehouse after I lost my old faithful stick ‘Stickie’ who then reappeared a few months later and, if I can find him, he will be getting a crafty upgrade ahead of the National Diversity Awards in September. My stick is my general go-to mobility aid. Although it doesn’t give as much support as my walker and isn’t a seat, however hard I try to prop myself up with it, it’s so much easier to get around with. It can change height easily if I get brave enough for heels and can fold up in a bag if necessary. I don’t realise how much my stick actually helps me. I managed to forget it today, which is a first for me, and I got so exhausted so quickly from walking around for a little while without it. I also never know when a flare is going to hit so even if I’m feeling brave I always keep her in my bag just in case. Also tricky to use when I have shoulder issues but at least it only uses one arm, unlike my walker.
Sometimes things get really bad. And I’m a determined little bugger, so want to make it to class on days where I can’t walk, even when I probably should stay in bed. But, on many occasions, I have tried (and mostly failed, because of my dodgy shoulders) to wheel myself around or make my flatmates get me a mobility scooter from the disability office at uni so I could get out of bed. At one stage a wheelchair was the best pacing option for me. And I will still often use one going through the airport so I’m not too tired or in too much pain before a flight, which I find difficult. I hated having someone push me and it often hurt my back and hips more than walking so that’s why a walker was the best long term solution for me personally, but when my POTS was bad, especially in the heat, and after my surgeries, a wheelchair was the only good option. I realise that I am very lucky to, most of the time, have the choice.
‘No aid? You must be feeling better’
This is the phrase I hate the most. I can understand why people say this, it is a fair assumption. But it is so wrong to think you can tell how someone is feeling by which mobility aid they’re using. The biggest reason that I will not use a mobility aid is because I’ve subluxated or dislocated a shoulder. This means my shoulder is in pain and I can’t put my weight on an aid so I can’t use one, but then my legs and my body are in pain and tired because they don’t have the extra support of an aid. There are other times where a mobility aid just doesn’t work. For example, at the gym. I used to be so scared of going to the gym, despite all the good it was doing me, because I was worried people would think oh so she can go to the gym but now she can’t do xyz. But I knew the gym was making me stronger. And I guarantee my legs will be shaking after a session and I’ll be needing my stick. Sometimes, I think it will be easier to do small tasks without as I need both hands and occasionally I just get cocky and regret it after. For example, at graduation, I decided to take my stage walk unaided not realising how far it was or how many stairs there were so got back to my chair tired and out of breath having to take it slow and hold onto railings which could have been avoided. Plus a lot of the time, I have my stick, but I just put it away for the photo, which I’m trying to do less as it’s nothing something I feel I have to hide. Also, there are so many invisible aids; all sorts of supports and braces and tape that’s holding my body together that you can’t see.
I hope that this has given you some insight into the many reason why people might use different aids on different days. And if you have been thinking that a mobility aid might be helpful I hope this has given you some confidence and advice. Mobility aids can give someone so much freedom, they are not giving up by using one. The long and short of it is I can do things without my aids, but I can do so much more with them.
Spoons & Love.
If you’d like to support my blog please considering taking a free trial of Audible audiobooks
The “no aid, you must be feeling better” mindset is definitely one I’ve found myself having to undo over the years. It’s easy to think that no mobility aid=getting better, but as is the case with you and with other people I know, that’s not necessarily the case.
P.S. Small world! I was at UEA for a semester (back in Fall 2014, I was on a study abroad program with my uni in the U.S. and I was at UEA for a semester as a result of that program).