Trouble Adjusting

I have just become a full-time (when I’m out) wheelchair user. This is something I have resisted for a long long time. Truthfully I should have been using it for probably the last 3 years, but instead I resisted it & either stayed in – which was most of the time – or forced myself to walk despite the massive level of pain that would cause, followed by being crippled, often for days. I resisted because I felt embarrassed about needing the wheelchair, I was in denial about how bad my mobility had become & I was just being sheer bloody-minded!  I kept telling myself that if I went out that it was better to force myself to walk than use the chair, that I was maintaining some level of mobility this way.  In fact I was just delaying the inevitable at considerable cost to myself.

Finally I realised that there was no avoiding it anymore. I actually wanted to get out. It’s the Edinburgh Festival & my OH & I try to see a fair few shows. We didn’t bother for years but last year I decided we should make an effort & we ended up seeing a lot of really great shows. The downside was that I was frequently crippled with pain from walking & struggling to manage more than a tiny shuffle of a walk a lot of the time, it was so bad. It definitely put a dampener on things.  So this year I very reluctantly decided to accept that I would have to use the wheelchair.  On a lot of levels this has been a godsend. I’ve been able to get out & have a social life almost like an able bodied person & my pain levels have been much much more manageable now I’m not forcing myself to walk.

But it’s also been very challenging.  I feel really quite distressed that I have now lost even more of my independence. I am extremely reliant on my OH in many ways & I feel bad about that. It’s hard trying to come to terms with the fact that my physical health has deteriorated year on year & that the wheelchair will probably become a permanent fixture in my life.  I can’t even self-propel much because my wrists & shoulders partially dislocate & cause a lot of pain.  I have to be pushed, so even less independence.  I’m 34 & it’s hard to be reliant on someone else.

I feel vulnerable & exposed in the wheelchair. People frequently stare, presumably wondering what’s wrong with me & I’ve seen people whispering to each other about me. I know I should just ignore it & not let it bother me, but I feel like I’m suddenly so different to the “norm”, that I’m a sideshow. I know it’s silly but it triggers my social phobia quite a lot & makes me feel anxious. Thankfully I feel reasonably safe because my OH is with me & he would protect me fiercely if necessary, but I definitely don’t feel comfortable. I’m hoping it gets easier in time. Feeling vulnerable is very triggering for me, reminding me of how I felt growing up.

It’s such bloody hard work too. For some reason people seem to find me invisible, trying to walk through me as if I were invisible – I’ve had a few folk nearly end up in my lap! Others cut in front forcing my OH to come to an abrupt stop & me to nearly fall out the chair (I should wear the belt!). Edinburgh has three times its usual population at the moment due to the Edinburgh Festival & the crowds are an absolute nightmare. It really is like the Zombie Apocalypse has hit Edinburgh, you can barely move for people. That’s stressful enough as an able bodied person but as a wheelchair user it’s extremely intimidating as well as physically very challenging to get through. And people always try & shove in front of us or won’t let us through. I try to be polite & pleasant to people but sometimes I get really annoyed at them.

The biggest difficulty I’m having being a new wheelchair user is my OH is totally stressed out by it & hates it with a vengeance. He gets anxious & angry about the crowds, about crossing roads where the crossing doesn’t give enough time, about potholes & broken paving slabs, about sloping pavements that cause me to nearly tip into the road or into a parked car. He is fiercely protective of me & worries constantly that someone or something is going to cause me to get hurt. He says he dreads it each day we go out. He finds it incredibly hard to cope with the way people can be so ignorant & this has lead to him shouting at a few people which isn’t so good. He has depression & anxiety & social phobia, so all of this is extraordinarily challenging for him. He admitted to me that he also finds it embarrassing; not me but the chair itself makes him feel self-conscious, which is something that distresses him a lot. I have to admit I got quite upset at this, asking him what the heck I’m meant to do, not go out? He assured me that he loves that I can get out with him, he just isn’t coping with the wheelchair itself. He said the other night that he was sick of it, that the wheelchair was “taking over”.

I don’t know what I can do to make things less stressful for him, short of becoming housebound again, which is not an option. I don’t want him to feel sick with dread, to feel overwhelmed with anxiety, to be so stressed out. I would do anything to change things, to be able to walk again, but things are what they are. I’ve told him that he has to find a way to stay calm, for his own sake (& for the sake of the general public’s shins & ankles!!) or he’ll make himself ill over it. His difficulties with it have triggered me a lot, causing me to feel like a burden, to feel extremely guilty for being so dependent on him & to feel unworthy of help. I know in my heart that he does not mean to hurt me, he has told me as much time & time again, but he’ll blurt out a negative comment about the chair & we’re back to square one. I am hoping that when the Festival ends at the end of the month, the city will go back to normal – in fact it’s usually pretty dead post Festival – & at that point we’ll both be able to adjust & move forward, literally & metaphorically.In the meantime I’ll do my best to get us both focusing on the positives of seeing shows, of being out together.

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4 thoughts on “Trouble Adjusting

  1. Hi! I found ur blog & just wanted u 2 know ur not alone. I 2 am 34 & have been a full-time wheelchair user since 2007. Prior to this I was advised to use my wheelchair for outdoor trips as I could barely shuffle walk & something which an ordinary person could walk in 10-15 mins would take me over an hour. But after spending the worst 8 weeks in an inpatient me unit, i left unable to walk let alone stand or weight bear. I am not able to sit up for long so am mainly in bed & only really get out of the house for medical appointments. But even they are now kept in order of priority. You are very lucky to have your OH & to be able to attend the shows. It is extremely difficult but try to concentrate on the positives as the negatives of being in a wheelchair will only let you slip further into the black hole. Best of luck with everything!

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    1. Hi, sorry for the late reply. Thanks for your comment. I’m sorry your M.E. has got so bad, I have M.E. as well though am probably 80% recovered now. But I used to be very sick with it, bedbound & only able to sit up for maybe 5 mins at a time, so I understand what you’re going through. It’s very hard. I’m so sorry the inpatient unit made you so much worse – was that because of GET? Like you I’ve got to the point where I can barely shuffle walk – I feel like I’m about 80yrs old, lol! Even getting from my flat to across the road is mostly too much for me now. You’re quite right about it being important to focus on the positives of using the wheelchair & I am getting there with that. I don’t use it in the house, at least not yet, but have to use it outside now or else I can’t go to appts or go out to things. I am very very lucky to have my OH, I am so thankful to him, he’s been amazing. I hope your health improves for you & wish you all the best of luck with everything. Take care x

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  2. I stumbled upon your post. I finally gave in to using a wheelchair last year. I struggled for such a long time and became housebound. I now use it permanently outside and in the home. I struggled with using it. Other people stare, are careless and it’s not a nice experience, I shouted at people and confronted them when I caught them staring. The point of my comment though is to give you hope. I’ve turned a corner and have embraced having to use a wheelchair – I don’t want to have to use it but it’s given me a new for details freedom. I can do things now. I hope you find peace with using it soon.

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    1. Hi, sorry for such a late reply. Thanks for your comment. Yes it is hard the way other people sometimes behave with wheelchair users. I’m sorry you’ve had such horrible experiences of people’s reactions, it’s hard to stomach I know. The other day a woman was coming towards us, clearly saw us but wouldn’t move out the way, essentially playing chicken with the wheelchair. We couldn’t move out of her way because of other people around us so she narrowly missed getting run down. She started yelling at us! It was a very unpleasant experience. But you’re absolutely right that it gives you freedom to do things you can no longer do otherwise, & for that I’m grateful. I think I’m starting to accept it more now, just need to work on my OH! I’m pleased for you that you’ve come to accept it & benefit from it. I think these things just take a bit of time. Take care x

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