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.


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?


Apologies that there was no shiny new post awaiting your perusal this morning, or indeed last Wednesday or Friday… I have had a few very tired days, due to a sleepless night, and a measure of extra illness. Over the past few days several things have been bothering me, but there is one specific thing […]

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The day(s) I (almost) ‘kicked the bucket’


Almost, but not yet…

I have no clue what the 11th item on my bucket list is. (Today’s Daily Prompt). I don’t even have a bucket list! This even strikes me as odd. I’m not entirely sure why. My best guesses are that I’m not that ambitious. I’ve never had a wish to see the world, perhaps because I struggle with things like travel sickness. I’ve no idea what people would normally put on a bucket list. It’s also perhaps because in general, I’m more chilled than most about the end of life thing. I almost died a few times as a baby, as I was 12 wks premature and very ill, needing operations as a tiny baby. I’ve also been in a car accident, which I wasn’t badly hurt in, but the only reason for that is there was no traffic travelling in the opposite direction, or I may have been toast. Most recently, I had a life saving operation; the one which gave me the bag on my tummy. I’ve had to face it, which is part of why I’m not afraid. I also know where I’m going when I do die, the bigger part of why I’m unafraid.

So, what’s on a bucket list?

If I were to have a bucket list, I get it might include things like getting a book published, eventually, visiting friends in America, and I’m unsure what else. So over to you! What would be on your bucket list?


The one with the ‘curlywurly’

An ordinary start, to an ordinary week!

Given the exertions of the previous week, a restful week this week would have been the sensible thing! Not a chance… It was such a long week that I can barely remember Monday. The two or perhaps three staff that are about to leave haven’t yet left, and still they needed to send a carer from another area to cover the respite sit/PA time. Fortunately, this one was lovely and allowed me the same flexibility I have with my regular carers. I bought my usual shopping including said ‘curlywurly’ (chocolate covered toffee in a curly shape, in case it’s not available in the US!)

I got to go horse-riding on Tuesday, which I love as it gives me so much freedom. It’s time out of my chair, it gets me off my estate where I live, and because the horse is so tall, I have an amazing view of the countryside. For the moment the benefit of horse-riding out-weights the horribleness of the pain I am in, and helps with aches and pains because of the movement of the horse. I have a special saddle, which means I mostly sit ram-rod straight, which is good for my posture. I also have great banter with the people who help me. So far so good, until lunchtime.

The ‘curlywurly’ moment

Tuesday was day two of the D-I-E-T. I decided after the trauma of Sunday that I needed to lose weight to help with the back pain and needed a sweet treat fairly low in calories, and that didn’t feel like a ‘diet chocolate bar. Sounds great. Unfortunately, in went the curlywurly, out came the filling, leaving me with a such a large space in my tooth that I kept hitting it with the tip of my tongue. Fortunately, I manged to get an appt to fix it temporarily within only a few days, which is a bit of a rarity in this country. Before all that, I had to get home. More of that in a previous post, as it’s part of a bit of a saga


By this point I was shattered so had completely forgotten about a appointment. My new OT arrived to do a sort of mind-mapping thing of where my head was at this point… great timing. We decided to focus on what my ‘roles’ were… so I am a daughter, sister, friend, listener… to carers as well as friends. It was so helpful to do that. The OT words were that it helps to ‘validate’ things I do manage to do, and where I want my priorities to be. As it turned out, the things I like doing and want to spend my energy on were on the left hand side of the page, and the things I end up spending my energy on were on the right hand side of the page. Things like appointment, being a service user (of several services) and all that entails, and trying to ‘people manage’, which I have ended up doing all of as I don’t yet have a ‘Joint care manager’, after more than four months of NHS funding. My OT told me that after some investigations, my file has disappeared into the either… welcome to my world dear readers, par for the course for me, however pessimistic it sounds. If you aren’t currently working due to being ill/sick and/or disabled, I’d recommend mapping out what your various roles are because it will help to see what you do manage to do and work out what else you might manage to do or to refocus where you are spending your energy. I spent the rest of Tuesday recovering from it all!

A new hobby

On Wednesday, I tried and failed to find a recipe to cook and freeze and decided to make bread instead. This means with me mostly directing, and the carer mostly doing. Somehow I ended up with more flour on me than the carer did! According to the carer, the bread looked like ‘sick’! However, it smelled like bread as it was cooking and tasted like bread when it was out of the oven… result! Odd, that I felt I’d accomplished something new when my carer did most of the handiwork! I’m definitely making it again as it is so much nicer that shop-bought bread and easy to do.

Me, the Social Flutterby

Thursday arrived, and I had a busy day planned, but fortunately this was a Good Day. Lots of banter with the morning carer, which as I explained before makes a big difference. I had a chance to rest, followed by an appointment to update my care plan. Just after this I got a welcome surprise visit from two lovely ladies who are volunteers with the local social enterprise who teach me to horse-ride. We had a great time catching up and there were lots of laughs. They worried about tiring me out, which happens very easily, however,I had time to rest before I went to a well know eatery with the bread-making carer and a dear friend. I left the carer and went to the nearby cinema with my friend to watch the film “Brave” the new Disney/Pixar animation. Caution: skip this part if you’re planning to see the film as this next part contains spoilers. I’d heard nothing about it before I watched it, but quickly realised most of the stronger characters were female. It’s basically about a mother/daughter relationship, and about being careful what you wish for! The moral in the tale is about finding your destiny within yourself rather than from a fate (or higher being?) which I don’t agree with, but I liked film and how it had strong female role models. All the Scottish accents kept me amused thought the film, and being Scottish myself meant I picked up on more of the jokes than my friend. Or, maybe I just have an odd sense of humour. I’d highly recommend Rachael Held-Evans Review of the film, which you can read here. After all of this, it’s hardly surprising I fell asleep in my wheelchair in the early evening.

Friday morning started uneventfully, and I got ready to go and meet my friend. It was fine, until I tried to leave. It being Friday lunchtime it was difficult to get a taxi. I tried to get my manual wheelchair to my carers car, but realised the wheelchair was completely busted. I ended up deciding to put my walking frame in my carers car and wing it. It’s crazy that I had to walk and put myself at so much risk when I have an electric wheelchair, and can’t get a taxi. I had a enjoyable catch up with a dear friend over a pub lunch, but an still suffering the consequences of trying to walk, even though I only crossed the shopping centre, street, and square, and back again. My feet are red raw, I’m exhausted and in so much pain. I really have to get the transport situation sorted. The rest of the day was a bit of a struggle due to medical issues and fatigue. I just completely crashed when I got home.

Drama, Drama, Drama

I’d hoped the drama would stop today but I started the day with a broken washing machine. These things are part of running a household but I have a smaller washing machine because the kitchen units are lower than normal. Absolute pain as I wasn’t informed of this when the kitchen was designed. However, I’ve made things worse as I didn’t fill in the guarantee. Off to start sorting it out so I can party later!

Transport (or lack thereof!)

A thorny issue…

I am well aware that the much-debated  subject of which I write is an understandably thony one, and to which there are no easy solutions. However, it is one which is having a huge impact on my quality of life. It also has a huge impact of the quality of life of many other disabled people too. I am wary that this will sound like a rant, as too many blogs on these and similar subjects can be, due to the depth of people’s feelings and the lack of any real solutions.

Right, where to begin. Transport has always been an issue for me, right from the point I left home at 17. There would be times I would stubbornly walk places, and suffer the consequences afterwards (blisters, pain, spasms. Other times I would fork out for taxis I could barely afford. I have always been someone who would would rather fork out for transport, and expend energy I didn’t necessarily have, in order not to miss out on social occasions. The impact of not doing so always seemed far worse. On the whole I am of a similar mindset nowadays, there just being many more circumstances, much reduced options and much more fear as a result.

For a while now, I have been compromising a great deal, whether that be sacrificing my pride and scrounging lifts off friends, (I HATE asking for lifts ). This means using my mannual self propell (SP) chair or my 3 wheeled walking frame. The walking frame or my zimmer is okay for short distances such as to/from cars and in and around friends houses. The thing is, I am not particularly supposed to be using it at all, though i can get away with it for what I’ve mentioned above. Ideally, I am supposed to be full time in my electric wheelchair. There-in lies the problem. Unfortunetly, this is where the problems start…

The saga begins..

I spend a great deal of my time trying to manage all these problems. A kind of damage, or circumstance limitation you if you will, due to being unwilling to sacrifice most of my social life. If I were to take my new electric wheelchair everywhere, I would immediately have to sacrifice going to friends houses. Then, I would only be able to go to places if I could get a rear-opening taxi, of which there are few. I’ve tried other taxis. There just aren’t many my electric wheelchair will fit into. My chair is very high partly due to the time of cushion I need and also to a possible error on the part of wheelchair services. I asked for this chair to be slightly lower than the previous one. However, it is the same highet as the last one, and the height of the memory foam cushion makes the highet of the chair from the top of the cushion to the ground still higher. Add that to the height of the chair as a whole plus the headrest, and you see the problem.

Then, add in that the local private higher firm only has a few rear-opening taxis, and that they seem unwilling to use them, either because the drivers dislike carrying wheelchair users (I have often heard this though obviously difficult to confirm) and also that this same company has the contract for carrying wheelchair-using children to school, meaning that these taxis are unavailable from 6am to 9.30 am, and from an unknown time (perhaps 2pm at the latest) until at least 4.30 pm, which is most of the time I need to use them. Given all of this, I need to look for alternatives.

One of the biggest firms in my city  also have some taxis where the door open outwards, but again these are in short supply. The taxis which are high enough for my chair are too narrow to be able to turn my chair round and have the chair properly clamped in. The reverse is true for the taxis which are wide enough. I know this too my cost, as my chair got stuck in one of these taxis. Fortunately, the driver was understanding and patiently working out the best way to extract my wheelchair from the taxi. He ended up removing not only the headrest, but part of the sholder support as well, as these are attached, so to do without one I have to do without the other.

So, are there any options left to consider?

The only other solution is to use the local social-enterprise company, who market themselves as being more understanding that other firms, having staff who are more highly trained and more patient, and also stock the kinds of cars which fit more types of wheelchair. I have used these a few times, mostly without incident. However, this is also not without its problems. I am unable to book a church with them unless I book it far in advance, which would mean me being more organised. Also the times at which you can book can be restricted. There are times when I have phoned to book transport to be told that the person who takes the bookings is not available and I have to call back later. Once, I was simply told that had gone home, and the person at the other end hung up the phone on me.

There was also a more recent incident. I had to the social enterprise where someone is teaching me to to horse-ride. I’d decided that morning to take my mannual chair, (which other people then have to push for me) and book are normal taxi, transfering from chair to seat, and the same in reverse,  because of how difficult it is too book an appropriate taxi for the 5 mile distance from my home to the social enterprise. A friend had booked an accessible minibus for a very similar journey to the same social enterprise, at the same times I also needed transport. When the minibus arrived to take her home I asked if I could be taken home in the same minibus. The person refused. I politely explained I was registered with the social enterprise which they work for and my friend explained that I lived on the same estate as the person he was taking home. Still, the person did not budge. I had not booked so that was that. Off they went with an almost empty minibus, and only my wheelchair using friend for company. If they had been willing to be flexible they would have had two fares for the same distance. Given that they are a social enterprise ake a company you;d have thought they’d be greatful for two fares for the same distance rather than one. Later that day, I explained the whole situation to my Occupational Therapist, who offered to call the company on my behalf and make a complaint without indentifying me. I am too afraid that were I to complain in person, I would then be blacklisted and unable to travel with the company at all. My options are limited enough as it is without restricting myself further.

The impact of all of this on my life is such that I now restrict my social life to those events where I can scrounge a lift from friends and take my walking frame with me, suffering the consequences after. For the situations where that will not suffice, I use my precious carer/PA time and ask them to take me on the bus/in a taxi with my manual wheelchair. The main consequence of this, other than the posibility of injuring the person pushing the chair, is that not having adequate support can leave me in agony, and severely fatigued for at least the rest of that day and all of the following day, limiting what I am able to do in the days following. On the times where I am unable to book support I miss out. I also miss out on using my support for things like the gym or swimming because I’ve had to use my support time for when I need to go out with my manual wheelchair.

As you can read, I feel completely out of options, as my elcetric wheelchair is also too big for the bus. I know this because I used to have discussions with my Dad about this when he headed up the day to day running of a bus garage for a multi-national organisation. He would argue that wheelchair users shouldn’t be using the bus because they weren’t a disability organisation. When wheelchair users complained the driver would not allow them on the bus Dad would go and visit them at home to discuss the reasons why.


So, what now?

The impact of all of this is now I have a fear of travelling where once I did not. I am also unsure if my chair would be allowed on trains. I fear not, given the problems I have with buses and taxis. I fear the same problems would transfer, so I have not ivestigated it, deciding it is too much trouble. The consequences of this is that I have missed out on the opportunity of a lifetime: to see some of the 2012 Paralympic Games. There are other issues as well as travel, such as I only have 16 hours support and week not including mornnings and evenings. I could have much more, given the extenrt of my disability, but am unwilling to do so given the impact it would have on other aspects of my life, so choose to have less support, while I still have a choice to stubbornly struggle on instead. One of my carers pointed out to me this morning, that had a sacrificed one sit a week for several weeks, I could have saved up enough support so as to be able to visit the games for a weekend. He fairly rubbed salt into the wound, saying that I would have loved to do it, and that any reasons why I am not going are just excuses. The truth is, I am too unsure how I would travel, given that I have so many problems already with relatively local jorneys, without adding my care needs on top of that. I could of course have thought about a motability car but feel this option is already closed to me. I am unable to learn to drive myself, having been assesed as not having enough co-ordination ir stable enough reaction times to do so. As I have carers rather than PA’s there is too much variation in staff for them to drive a motability van for me. A friend investigated this option for someone else and discovered then that only 3 people were able to be insured to drive the motability car. This is an impossibly low number, given that I’d have to get one of my parents and one of my keyholders insured as well.

I feel I have exhausted all options, therefore missing out on a one in a lifetime opportunity. In my mind, you can’t get any more restricted than that.As to the solution, I have no idea, and it is now to late to find out. I will have to be content with cheering myself hoarse from my sofa and being satisfied with friends’ accounts of the games. I bet no one can cheer louder than me…

This was the week that was The One With the Wedding

The beginning is a “jolly good place to start”

What a week this one was! Really don’t know where to start! Monday started with travel woes though. Not actual travel, just the woes… and panic about if I would be packed in time, when the parents had already packed a lot of my stuff two days before… you get the gist!!

Might have had something to do with the start to Tuesday though! Texting one half of parental unit at 5am as was crawling around in back-related AGONY. Doesn’t matter that said parent (Dad!) didn’t have time to read it till 9, I felt a weeny bit better having sent it. Cue panicked phone call a few hours later,. in which I tried to comprehend not going to only-b(r)other’s wedding. Phone call to doctors surgery went rather well I thought… till I tried to lock the door, phone care co-ordinator and drive my electric wheelchair on full speed at the same time. Had never asked for sit and wait appointment before, but knew they existed as I have a friend who asks for those often. I got seen within 45 minutes by a doctor who knows how complicated I am, and in which appointment we tried to work out which medication regime would be less harmful… don’t try it, it hurts my brain just thinking about it. My carer having met me at the doctors surgery, I bolted home at full speed trying not to wince too much before jumping in the car to speed round to the hairdresser. I thanked them for shifting the appts half an hour later, and they told me to take a deep breath and calm down, as I “looked like I’d had a bit of a morning”!!! One consultation later, hair colour applied, I could finally breathe! Spent the rest of Tuesday trying and failing to feel organised.


The ‘actual’ Travel, rather than just the ‘woes’!

Wednesday morning arrived all too quickly. Cue more speeding around, by the carer not me! I being aided by a well-known brand of pain-and-person-sedative. I dread car journeys at the best of times, but this was worse, as I’d had a nightmare the week before, which I reckon was a medication created hallucination that involved a car crash and ambulance helicopters! I could even hear the helicopters, which was even scarier. The memory of this lingered still. Knowing all too well what I’m like, my parents had very helpfully split the journey in three. The first part passed without incident, and included a stop over at Granny Edna’s house. 🙂

The next morning, after an early start, we were off to the other Granny Edna to collect the fascinator she and my ‘Auntie’ P had found in a florists in Arbroath. Panic not, this one was far more tasteful than the Philip Tracy monstrosities worn by either of Duchess of (i forget her name…) I nearly wrote princess Anne!! Please forgive me, it’s Monday. Beatrice and Eugene, that’s them. After lunch it was off up to Aberdeen too a VERY posh hotel called Ardoe House. After a room inspection we trooped off back to reception to ask if they had anything more accessible. Having been told that WAS their accessible room, I insisted we should make the best of it. I have since considered writing a review on “TripAdvisor” but it most people wouldn’t understand what “visitable” by a wheelchair-user, not fully accessible” means. Said room was a bath, not a walk-in-shower, horrors! I reasoned that at least the floor wouldn’t get flooded, and the bath was low, handrails were also unusually steady and in helpful places. All of these things make a huge difference. That, and the bed was so comfy it meant taking less head-swirling painkillers, always appreciated. The evening was a meal out at Rustico’s. A very lovely Sicilian Restaraunt in ‘A-berdeen’, apart from the two floor stair-climb. However, the loo was surprisingly accessible, especially given that it was at the top of two flight of stairs! still, full marks from me! Very lovely meal, with great company. Great to get to know my almost-sister-in-law, her family and most of the rest of the Bridal Party.


It’s here, Already

Finally, finally, the much anticipated day arrived, horribly early. It was lovely to get caught up in the excitement getting my hair and make-up done by lovely people the bride has known for years, and to get to know the Bride and Bridesmaids more. So relaxed, and so much fun. I’ve only been to a couple of registrar-officiated weddings, but this registrar seemed to rush through it, and didn’t know the bride and groom, which felt rushed and impersonal, at least to me. She left, so that my Dad could give the (unofficial) non-legally-binding Blessing. Wedding done, time for the photos. The award-winning photographer was ace! I managed to succeed in standing for the family photo (with five of us Squeeeeee!!) but almost succeeded in falling backward after… scaring the bride. Thankfully my Mum, caught me!! The meal later was lovely and the staff were SO attentive and helpful, helped make the day. I managed half of the Canadian Barn Dance in the Ceilidh even if I could barely stand after! So pleased though, as it’s one of my many favourites. Just happens to be my favourite-favourite. Lovely to catch up with my bestest-school-friend and some of my parents friends in the evening. Just realised I’ve neglected to mention the speeches. They were amazing, but doesn’t everyone say that! Such a good idea to interspersed speeches with courses of the wedding-banquet. I lasted until the very end of the evening which suprised everyone including me, especially given my #Spoonie ways 🙂

Saturday was a huge anti-climax given the excitement of the day before. We checked out of lovely Ardoe house and headed for Edinburgh to chill out and eat Takeaway. Sunday arrived, with me feeling even more tired than the day before, having had to call through to the parents in the middle of the night for water and painkillers. I still couldn’t move, even one baby movement at a time. horrendous! Thankfully, I made it to my Gran’s church eventually. So loved catching up with her friends, and some of my own. Just lovely to be at a different church for a change and hear a different perspective on two parables I had recently studied in my own church in Leeds. After that, we headed to the car for the journey south. However, this one was long, wet and foggy, in which I relived my hallucination or nite-mare or whatever-it-was. Our lunch stop was at Berwick  Garden Centre for lovely food. Scampi and chips are my ultimate comfort food, (brings back so many memories as well) followed by millionaire shortbread and tea (aka caramel shortbread/cake. What’s the difference (if any!) between shortbread and shortcake?


We eventually got home, it seemed to take an absolute age, compared to the journey up. It won’t have helped that I was squirming in pain. Potentially ‘payback fatigue from Friday’s shenanigans. So painful though, but entirely worth it. Today I’m sort-of-almost-nearly back to normal. I’d love to be off back to bed though! No chance, have spent all my nap-time writing — FAIL! I once watched an excellent Beeb documentary on sleep. I’m sure it said between 8 and 10 am that the heart is vulnerable to attacks (boo!) but that this is also the best thinking-time. It is definitely the time when I find my writing flows best, unless it’s one of those (many) days when I end up back in bed after my carer(s) have left. I’m off to edit this and brew moreTea Pigs Chai tea! LOVE it, the best I’ve found, and my favourite nausea cure. Until next week… (or tomorrow!)