What’s so hard about going out?

‘Worry Wart’

I’ve found this post so difficult to start. I have tried several times in the last day or two, but not managed to concentrate long enough.  The words have jarred so in my head, that I’ve ended up deleting them and going outside for fresh air. Still, my mind refuses to quit jumping from topic to topic, thought to thought. I’ve cut, copied and pasted so many times trying to make the words fit despite the chaos in my head!

I’ve always been a worrier since I was very small. Outings have always been hard since a young age because of the need to be near a toilet. Growing up, I still went camping with The Brownies, and The Girl Guides, even though the latter meant sleeping in tents… and dashing to toilets. I’ve been on numerous picnics with my family or while on a Scripture Union holiday. I always worried about accidents, and developed something of a fear of public loos.

There were other worries too. Since I was very small, I become easily disorientated, sometimes even in familiar places, getting lost as easily as a young child might do, and have been known to panic in crowds. Having the spatial awareness of a 10 yr old is the reason why I’m not allowed to drive, but somehow, still allowed to be in charge of an electric wheelchair!  I don’t know how I managed to move away to university twice, given these sorts of problems, but now many years have passed since my move to the wrong side of the Scotland/England border, I’m very glad my parents gently encouraged me to accomplish as much as possible. I was no different from my brother in this respect, having both left home at a similar age. However even if going out while at uni or when I lived in my flat was as ‘simple’ as going out for a meal with friends, out to a friends house or out shopping with friends, I’d be so anxious beforehand so as not to sleep much the night before.

Argh….!argh

As time has gone on, and my health issues have become more complex, going out have become much more of a thought, and required more planning than ever. Even weeks or days before an outing, I’ll worry whether I’ll be well enough to go at all, and how much going out will take out of me, or if it will cause a pain spike. Remembering to take spare ostomy kit and spare clothes, medication, my phone in case I got lost, always having a drink with me because of greater risk of dehydration, and so on alleviates some of the worry. However, I’ve even had panic attacks and lots of trouble with anxiety, especially in the last few months, before I made the decision to move. I’ve had mindfulness training and other help with my mental health due to the toll my physical health has had on my mind. I find it useful as a practical skill to calm down if i’m in a state of heightened anxiety. Of course, I still pray at times of worry and panic too, as mindfulness is no replacement for prayer, and nor is it intended to be.

‘Somebody stop me’!

Tomorrow, I’m due to meet up with a faithful friend I haven’t seen in 2 and a half years. I should be excited about seeing her and catching up on all her news. All I can think about is if I will feel well enough to enjoy being out, if my friend will be shocked at the differences in me, and how I will manage to stay calm while navigating an area unfamiliar to me. There is of course, the usual worry over toilets! I will be with a carer as I am unable to do this kind of thing on my own. Much to the staff’s confusion, as they said they didn’t want to feel like a spare wheel in a private conversation. Fair enough… The worries around going out have become enough for me not to be concerned about this, as it is far more important to be accompanied and hopefully relax enough to forget everything for a little while, other than enjoying seeing my friend..

Making such an effort to go out means I’ll have to schedule in ‘recovery time’ afterwards, chronicillnessmeme2to try to recoup some of the extra energy used. Going from day to day can mean I need a least one recovery day in bed, so adding extras to my week isn’t easy. It’s very necessary for me though. It’s a big part of feeling as though I’m living, and not simply existing. Being with friends or family energises me, and I love being around people as much as ever. Despite all the effort, I’ll continue to push myself to go to new places and keep seeing my friends occasionally, rather than them always having to come and see me. A carer commented today that I seem to have lots of friends. I think it’s in part because I’ve learned the hard way that you have to be a good friend to others to make good friends. I wouldn’t have it any other way… and I get to nap after!

Over to you….

 

  • Áre you a worrier? I’m interested to hear how you manage those worries, whether it be through keeping a journal, hitting the gym or something else.
  • If you also have an illness (physical or mental) or a disability, do you find it difficult to meet up with people or to go out? What are some of the ways you cope with going out, or coping with not being able to go out?

Two stories, one theme: Disability

Two disability stories were prominent on BBC Breafast this morning. One, concerned with the creation of disability; strokes occurring in people under 65, all because BCC’s Andrew Marr has had a stroke; and the other that there has been no noticeable take up by disabled people in Paralympic sport after the games. Neither, perhaps is a surprise. 

Discussing Disability: Strokes

Firstly, strokes in people under 65. A dear friend has recently had a stroke, and her Facebook updates continue to amaze me, make me laugh, or make me write something in empathy or encouragement. What stokes have in common with Cerebral Palsy (CP) which I have, is that both result from damage to the brain, meaning that each person is affected differently depending which part or parts of the brain are damaged. This why discerning if people are ‘disabled enough’ to claim benefits or not. It is also why it is hard to gauge how well people ‘recover’, or regain ‘normal’ functioning from strokes. If you would like to read more on why healthy people have strokes, the Beeb have written a feature about it

Disability Sport and the Paralympics: what legacy?

The second story is concerned with disability sport in this post Paralympics era, and comes as no surprise at all to me. Nine in ten clubs saw no noticeable take up in their sport after the Paralympics.The reasons for this are many  and varied. The first comes from disabled people themselves, as pointed out in the BBC’s coverage; you are half as like to participate in sport at all if you are disabled, and if you can find a club near you which can meet you access needs you still need to be able to afford to get there, and have a way of getting there in the first place. Given the squeeze on people’s finances in general, and for disabled people in particular due to benefit ‘reform’, in my opinion this will become more and more unlikely. Of course, the head honchos disagree in terms of take up of participation as Tim Hollingworth argued on BCC Breakfast this morning that due to the success of Paralympics GB’s ‘Parasport’ and specific programs designed to ‘fast-track people to elite level disability sport. He also says that there have been clubs setting up from scratch in the post popular sports such as wheelchair rugby; However, this seems to be masking the real picture. I have pointed out before how the main men are hiding under the success of the games themselves. If you’d like to hear more on legacy, here’s an audio from Discuss winner, John Harris.

At a personal level, why do I not take part in more sport?

I go horse-riding once a week at best, thanks to the generosity of a local social enterprise, and absolutely love it, even in rain or the freezing. I have blogged about the horses before. However. to go horse-riding more often, I would have to go all the way to Middleton, to specialist Riding for the Disabled provision. They have much better facilities, according to someone I met by chance at the social enterprise’s last open day. However, as I cannot afford the taxi fares to get there, and would not have the care time nor the drivers for a notability vehicle. I have no way of getting there, or support while i am there, if anything was to happen to The Bag. 

The second sport I participate in is more mainstream. I have a gym membership that I rarely use. Some of the time this is simply because there are other things to do with my time. The other reason is that I often do not have the energy and therefore need to decide when I realy am to tired and whether I could manage it if I were pushed. I am not able to manage weights machines and things like that, more along the lines of gentle exercise  sometimes swimming, using three machines in the gym, and the toning chairs. However, I am unable to get there on my own because I cannot manage my manual chair; and there are so many difficulties with transport with my electric wheelchair. I am also unable to transfer safely onto machines in the gym without help, and this is often also true for the toning chairs as well.