Day to Day Frustrations

I thought today I would write of some of minor irritations of being disabled in a wheelchair. Minor because they are not life threatening but irritating nether-the-less as they make a difficult life even more so.

Going Shopping:

Well first you have to think about if there is some where safe to park or else you will have a wasted journey. For example when we go for a haircut in Werrington P'Boro there are no assigned parking spaces so we take a gamble every time when we park that some arse-hole does not park tight up against us so making it dangerous for me to get him back into the car. We have a label on our car saying we need extra room on the passenger side of the car. Same when we go to Physio at Cygnet park. Now there is a development that really annoys me, effectively brand new but not disabled friendly at all,difficult entry doors, exit release buttons out of reach, no designated parking. Any independent wheelie user would have to stand outside waiting to be let in and if the business is on the top floor hard cheese in many cases as lifts are far and few between. All probably within the relevant building code but unhelpful nether-the-less.

Shopping in malls is a hit and miss affair, some stores better than others regarding access. In the Serpentine Green centre near us WHSmith deserves a demerit as if a wheelie wants to use the sweets dispenser or get to the fridges on the immediate right hand side of the store there is not enough room to get your machine round.

My biggest bug bare is Sports Direct in all stores I have visited there are parts of the store that are inaccessible to wheelie shoppers. A special mention to the one in Leicester city centre in which I felt extremely uncomfortable as should there have been a fire or emergency evacuation I am pretty sure we would not have made it out safely. Everything is so on top of each other there are no clear lines of sight to the lifts, or able body exits. The tills are at the back of the store and badly laid out for access by chair. Everything is piled high making their stores both difficult to shop in and claustrophobic.

Sale time in most clothes + book stores is a nightmare as many retailers forget about safe wide enough access and egress in their hunger to promote their sale goods. Other stores do not adequately control staff carrying out stock replenishment and leave new stock blocking up the aisles, getting out far more than they can deal with at any one time.

Oh and then there is electrical stores, including Tesco's, Curry's, Comets. They showcase 3d TV's with the glasses in display units that make it impossible for the average wheelie to use as the bases prevent them getting near enough, oh they will if you ask get you some glasses out of the back, but again you are being treated differently highlighting your disability. Then there are those displays of laptops that you cannot use as they are stuck to the counter at a height that makes it impossible for you to try them out like everyone else. And lets not forget Tesco Direct and Argos where their catalogues are on desks way too high for the average wheelie user.

Eating Out

When able bodied people consider the prospect of eating out they think of what kind of food do I fancy? Well so does the wheelie user but quickly followed by, will the tables be high enough for me to sit at the table, will it have legs that mean my foot plates wont fit over, will they have ornate cutlery that wont fit in my hand strap, will I be able to use their drinking cups, will I have enough room so that I do not feel panicked by not being able to make a speedy exit. Most make special provisions for children but seem unable to have a few tables stashed away that conform to height and feet type to make things easier.

Driving about

Pot holes are a nuisance to everyone but to the wheelie user they can be extremely painful, last thing a wheelie in a WAV needs is to be tossed about like a salad in the back. Same can be said for sleeping policemen, ramps etc and to those drivers behind me that get annoyed because I slow right down to navigate these, BOLLOCKS !!!

Booking a Holiday

I used to love planning our holidays I would research on the internet, get some brochures from the travel agent and then go and book it at what usually having done my research a pretty good price.

Now I have to find out can the airline cope with our need to be facing a bulkhead, am I allowed to take his prescription medication into this country, does the hotel have a wet room, zero entry pool, raised beds, how about the transfers, what medical cover can I get, what emergency medical facilities are available, is there any accessible trips we can take. Then because of all the special requirements can we really afford it.

Still here....living the same crap day in day out.

Have not written anything for a few weeks, as trying to just get on with it. Last week we had to stand down one of carers after a 04:00am argument over what he could and could not do. We like many in our position are having terrible problems finding the right team to look after Hubby. When the agency pays £7.58 per hour why am I surprised, when we get dead-end people in a dead-end job.

The system sucks, to get this provision of care you have to pass an assessment proving ongoing medical nursing need and not just social care need, but you don't get provided with professional people of that level, no you get people who have never done a days caring in their lives, people with lots of personal baggage, no personal discipline or confidence to do a good job. I know this is not everyone's experience, but it is ours.

Hubby is still struggling over the big decision as to whether to submit to the Baclofen pump operation, and I am desperately trying to hang in there giving him the support he needs to make what I think is the only decision without pushing that down his throat.

Meanwhile he is having a horrible time with the pain and spasm, talking regularly about ending it all, the story line in Emmerdale is not helping either. Ever since the x-ray machine at Peterborough City Hospital crushed his left leg his rectus femoris muscle looks like it is ready to pop out of his leg, which of course is extremely painful on top of his already trashed knee.

I since we now have carer cover am actively looking to get back to work as a Project Manager in the engineering fields. But I know as soon as someone sees that you care for someone they run a mile. It is their loss I know , but still hard to take as I do have a pretty sound CV with oodles of experience.

So to give you a picture of what it is like for us at home, lets take yesterday as an example,

Having spent Saturday night up at least once an hour to adjust his legs and try and make him comfortable, 06:00 arrives so his urine catheter has to be done, so I drag my tired bod out of bed yet again, get the stuff, sit him up over the edge of the bed, drain off the urine lift him back into position on the bed, physically , forcibly straighten his legs, bring up his legs again, put the cushion pad in between his knees, stuff pillows on his right side to secure his legs from flopping over, flip his pillow, flick his toes as they constantly cramp. Then I can flop into bed again for a few more minutes before he asks for help again. This is how it is constantly through the night and we can not get the carers to do this so I can get some real uninterrupted sleep, instead like last night they stand watching me doing it all and when we try and get them to do it they mess it up hurting him terribly. Last time I looked I am not superwoman! why am I so...oo special to be able to do what these carers can not? Utter bollocks..

just after 08am we get TDB up but he is in so much pain that he very shortly needs to go back to bed for further stretching etc. No wonder my arms are like a Russian shot putters. We were supposed to get a visit from relatives y'day but had to put them off as I knew I would not be able to cope with his bad mood being in such pain and their need to be entertained. This is how carers/disabled become so isolated. So the day went on bed up, bed up over and over again.

So we are still here living the same crap day in, day out....

Unthinking, Uncaring, IDIOT...

I thought I would treat my hubby to a McDonalds breakfast yesterday. Imagine my horror as I turned into the site to find an articulated lorry parked across all of the disabled parking bays. Then of course you get the tough shit park some where else attitude from the driver. The car park was very full so we parked up poor TDB had to stay put and eat his in the car.

I have of course written to the companies involved reminding them why disabled parking spaces are sooooo important to those of us living with people with severe disability and have asked that they do a training session watching the YouTube video entitled Just 2 minutes, http://youtube/watch?v=e9EYh_Tr_Sc

Urrrgh....No One gives a shit....