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Dating and when to tell………

This blog post is part of Blogging Against Disablism Day 2014. The date was 1st May, but better late than never!

My last relationship ended almost two years ago and I’ve decided to start dating again. Over the past 5 years, since I was last dating, my need to use my wheelchair has increased to to point where I don’t walk anywhere outside my flat. So, how do I convey this to a potential partner?

My wheelchair is a vital part of my life, in the same way as my iPhone, iPad and car. But I don’t want it to define who I am. My personal skills and qualities are no different to when I was fully able-bodied. My interests, hobbies, likes and dislikes are pretty much the same too. I still have itchy feet and long to travel more in the UK and abroad.

I have never been sporty – I hated games at school and would do anything to avoid playing – especially on cold winter days! Being forced to run round a frozen hockey field three times before play commenced by a sadistic games mistress was never my idea of fun! The fact that I never found a sport I was any good at probably contributed to my preference for playing Scrabble or other board games.

Whilst I love exploring new places and being outside on long sumner days, I don’t understand the lure of going for long walks when it’s cold and windy. I’ve never enjoyed rambling or climbing and certainly not in the rain! Give me a ruined building to explore and photograph or the chance to enjoy a visit to a National Trust property any day.

I love going to art galleries and exhibitions, to be challenged by installations or modern abstracts as much as I enjoy Monet, Manet, de Lempicka or Van Gough. Gallery mooching has always been my idea of a wonderful day out. Walking for hours or bird-watching has never appealed.

I understand for some people that their need to be physically active is a vital part of their lives, especially if they have a sedentary job. As a Nurse I was always on my feet at work, even as a manager I would be found purposefully walking through the building, making sure my staff were doing their job correctly and that patients were receiving the care they needed. My staff never knew when, or for how long I would be on each floor, a great way of being visual, available and informed. At the end of my working week, I looked for enjoyment in theatre, ballet and exhibitions, where I could sit down from time to time. I would much rather stretch my brain than go to the gym!

The only thing I really miss is going to a club, particularly the women’s only events that I once helped to organise. But may be at almost 60 I’m getting too old for clubbing!

As for the things that annoy me, I’m just as intolerant of people who are prejudiced or racist, drive badly and cut me up or ride their bicycles as if they own the road as I have always been. I dislike being in queues when shop assistants are gossiping with their friends instead of serving customers or being pressured to buy something I’m still making my mind up about. I get angry reading or hearing about adults who abuse children, I’m ashamed to share a profession with nurses who are uncaring, neglectful or just downright lazy. None of these views have changed over the years.

So as you can see, in someways, I don’t feel I have changed as a person because of needing to use a wheelchair. When I talk to someone I hope to be dating, I’m very clear to say that the only major difference my disability makes is the need to plan when and where I’m going to park. Most of the places I need or want to visit are fully accessible.

Long before I started to use a wheelchair I didn’t use public transport, I disliked being in overcrowded busses and trains especially the underground. So ever since I moved back to London, I have driven everywhere. From my perspective nothing has changed for me in that respect either.

But for the some of the women (and as I’ve heard from straight friends this applies to men too) I have talked to seem to feel that using a wheelchair is something that should be declared up-front. I’ve seen other on-line profiles when women have either shown photos of themselves in their chair or mentioned that they are disabled.

My thinking process has been different, I want someone to get to know me because of my qualities as a person, and understand what I would bring to a relationship. I take the view that I’m more than my chair – that being disabled has not changed who I am as a person. It’s just an extra facet of my personality. Am I wrong?

Well, I guess one thing comes out of my rationale, if someone doesn’t want to date me just because I use a wheelchair, they ain’t worth knowing! I won’t date a right-wing racist – however good looking they might be! Even if I wasn’t disabled I wouldn’t want to know someone who was prejudiced against disabled people.

I will accept that having to pace myself in terms of not getting over tired or making sure my pain control remains good can be restricting. One girlfriend I dated had two dogs, their needs limited our lives far more than my wheelchair ever did.

Life is about sharing and compromise.

So, back to my question, what is the right time to tell someone I’m disabled? I tend to talk about my need to use a wheelchair at about the same time as I’m telling someone my adopted daughter has a different skin colour to me.

Is this the right timing? Both pieces of information can elicit very different responses, but ones that tell me a lot about the person I’m talking to.

I’ve recently had a delightful date with a woman who didn’t say anything about her Caribbean heritage. Her ethnicity wasn’t obvious from the photo she sent me – she is quite light skinned. On meeting her I was more interested in her as a person than where her parents came from. We are all defined, in some way by our families and how we are raised, for me the most important part of someone’s heritage is their tolerance and open mindedness.

I’m very clear in telling a prospective date how independent I am and that I have paid PA’s who do any housework and caring tasks I need. Also, I have no wish to live with anyone full-time again. I value my solo visits to my cousin and my time engaging in genealogy research, neither of which I would expect a partner to share on a regular basis. Nor would I count on a partner understanding my love of US crime or hospital dramas!

So I don’t think I’m being unrealistic or unreasonable.

But am I?

I would be really interested in hearing from others how they deal with dating and what success they’ve had.

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Right Corneal Graft Rejection

This last week last been been stressful and I’ve yet something else vision-wise to adjust to.

Last Sunday I noticed mistiness, pain and weeping in my right eye. Having had similar symptoms when the 25 year old corneal graft in my left eye began to reject and I needed a partial re-graft in May last year, I feared the same thing was happening again, but this time in my right eye, which had originally been grafted 22 years ago.

My vision in that eye has never been good. As a child I had a pellet flicked into to it from a catapult and that caused me some vision loss. Eighteen months ago I was assaulted by someone with mental health problems. She punched the right side of my face causing me to sustain a retinal bleed. Both of these things affected my distance vision considerably but I have retained some close vision.

I was anxious to get to Moorfields to get my eye examined. I desperately wanted to go early the following day, Monday. But I have been waiting for several months to have the gate to my balcony replaced and Monday was the day this was finally going to happen. This may seem like a insignificant thing, but my next post, ‘The Gate’ will explain why this was so important to me.

So it was very early on Tuesday morning that I left home, grateful that the glop problem I had experienced on my left lens had now been solved and I wouldn’t have to worry about not being able to wear my left lens all day.

I got to Moorfields just before 8am, and was just about to reverse into my favourite parking space when I very large lorry drove over the pavement and manoeuvred into the gap! I was not happy! I got out of the car, but not quickly enough to speak to lorry driver, who had, conveniently for him, disappeared. He was parked illegally, the bay was only able to be used by cars with residents permits or Blue Badge holders. So I had to find another space quickly as I wanted to get to the Emergency Department before the morning rush. The only space I could find had unmarked orange bollards at one end of it, not a valid way of preventing parking, but a ploy often used by builders who want a particular space. Unashamedly, I parked my car and moved the bollards, so I could get my wheelchair out.

Fortunately from this new space, I was able to get to the hospital without taking my wheelchair on the road, a very dangerous things to do, as I would be invisible to any lorry going in or out of the building site beside the hospital. I didn’t want to end up as a wheelchair casualty.

At the Emergency Department I was quickly seen by a Nurse, and then by the Doctor, he examined my eye thoroughly and then sent me for an ultrasound on my right eye. I’ve had ultrasounds done on other parts of my body, but this was a new experience.

It was painless and quite comfortable, just a light touch over my closed eye lid. Technology is so wonderful, from the optical ultrasound it was determined that I had no detached retina or retinal bleed. I was relieved, at least with a diagnosis of graft rejection, I knew what I was facing.

The Doctor instructed me to use Dexamethasone drops every half hour into my right eye, and use a steroid ointment at night. Then an appointment was made for me to see the Corneal Fellow two days later. 

All I had to do now was collect my medication, whilst waiting, the Moorefields Mascot paid a visit to pharamacy, encouraging patients to visit the research unit to see what when on there. Tempting though this was, I just wanted to get home.

Three hours after I arrived I was leaving Moorefields, excellent quick treatment, the NHS at its best.

The cone dumping builders were waiting for the space I had appropriated, but at least they weren’t abusive. I was just pleased to get back in my car and be able to drive home.

On Thursday, as I was waiting for my next appointment, Ken Pullum walked passed me, most surprised find me at the clinic, and no doubt relieved that it wasn’t him I’d come to see with yet another problem with my scleral lenses!

The Corneal Fellow, whom I had met briefly last year, decided to prescribe me systemic steroids, to see if that, combined with the topical steroid drops and ointment would reduce my swollen and waterlogged cornea. I was to take 50mg of Prednisolone for 3 days, 25mg for 3 days, 15mg for 3 days and finally 5mg for 3 days.

I was to return the following week to see my own consultant to discuss any future treatment and possible future surgery.

After all the difficulties caused by not being able to get my care hours increased following my surgery last year, I wanted to have a whole year without hospitalisation. It looks now as though this may not be possible.

My only consolation, is that at least if I do need surgery, the good vision I have in my left eye will enable me to be reasonably independent post-operatively.

My only worry is that my balance is very poor at the moment, I’m having at least one fall a day. I’m not sure if this is due to or exacerbated by my loss of vision in my right eye. Part of the reason I know is the unsuitability of this flat, the lack of space I have and not being able to use my wheelchair inside the flat. Carrying trays from kitchen to living room or drinks to my bedroom is hazardous, and would be so much safer if I could use a trolley or my wheelchair.

So amidst having to prepare for probable future surgery I must increase my efforts to move from this flat, it is becoming a more dangerous place for me to be, and moving needs to happen soon, for both my safety and sanity.

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Everyday Life, Medical

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The Gate

There has been scaffolding on the balcony at the back of my flat for over 7 months. The first lot was erected to enable the heating engineers to fit a new boiler with outlet unit into my upstairs neighbour’s flat. When the job was completed the scaffolding was not removed and the builders who arrived to do the external decorations and repair work in March just built on to it to cover the whole of the back of both mine and my neighbours property.

All of this has meant that it was virtually impossible for me to get out on to my balcony, so I didn’t realise that the gate which I had put up some years ago to stop my crazy alcoholic downstairs neighbour coming up onto my balcony, had been moved and the padlock and heavy duty bike chain had disappeared. My tenancy document states quite clearly that the balcony is for my sole use, but that the garden below is shared. Because I cannot get down the very steep steps to the garden, I greatly value having the balcony all to myself.

I have no idea who cut off the bike chain, it was possibly the second lot of scaffolders, but they denied this, saying they had not seen any padlock or chain. When the first scaffolding was erected the poles were brought through my flat, so those scaffolders were unlikely to be the guilty party.

I decided it wasn’t worth aggravating my downstairs neighbour by trying to find out if he was the culprit, but strongly suspected he was, as when the gate was first put up he was livid that he could no longer get on to my balcony and smoke near me or spend ages trying to have a drunken conversations with me that I really don’t want!

Once all the external works were done and the back scaffolding removed I hoped it would be a simple matter to get the gate fixed back up, but things then started to get complicated. My downstairs neighbour decided to dump a load of his junk on my balcony! Thus included a rotten garden table, two rat cages, a couple of rubbish bins and some mouldy doormats.

I got my son-in-law Trevor to take everything back down into his garden. At the same time I also got him to retrieve my two rather expensive garden chairs, which were now downstairs, one in the supposedly shared garden and the other, according to Trevor clearly visible inside my downstairs neighbour’s patio windows. Trevor is a very well built, solid, fit guy, he goes to the gym daily and has worked in security, I knew my crazy neighbour would not pick an argument with him!

So having re-claimed my chairs, I purchased another sturdy bike chain and padlock and chained my chairs to the balcony railings to make sure they didn’t find their way back into my neighbour’s clutches again.

I spent some time trying to fix a date to get my gate reinstated, 3 promised dates came and went, mainly due to the weather. Finally I got a definitely agreed date of last Monday.

As I didn’t want to get into any direct confrontation with my downstairs neighbour, because of his drunken aggressiveness, and thus get into an argument about the trash he had dumped back on my balcony. I enlisted my volunteer Jill to be with me to deal with any unpleasantness that might happen.

Sure enough as soon as the workman arrived to reaffix my gate, my downstairs neighbour came out of his flat, clearly not sober, and shouting loudly!

The first altercation was over the dumped trash. I wanted it taken back into my neighbours garden, he didn’t want it moved at all! Jill was able to persuade the workman to take all the trash away with him, as it had already been agreed that he would remove some netting from the railings that the painters had left behind. So, one problem solved!

Having lost that battle, my downstairs neighbour decided to tell the workman how to re-affix the gate. The workman wasn’t pleased. First my downstairs neighbour tried to give the workman some rotting leather belt to attach the gate to the railings. When I protested that it was nothing to do with him, he returned with some very thin metal chain! Very easy for him to cut though!

Once the gate was fully fixed to the wall, I then took the heavy bike chain I had used to fasten my garden chairs to the railings, and gave it to the workman, who wrapped it through the gate and round the railings securing it with the padlock. Once my downstairs neighbour realised he was thwarted he retreated to his flat cursing both me and the workman.

At last, my balcony was secure! Peace, security and safety at last, I thought! I was very grateful to the workman who did more than his job description entailed and to Jill who was a super, tactful advocate.

I went to bed that night feeling very pleased. Until I was woken at about 11.30pm. My downstairs neighbour was having a drunken altercation with another man, whose voice I didn’t recognise. The cause of his anger was very evident, he was furious that he could no longer get onto my balcony! He was loudly cursing both myself, the workman and the world in general! Then I heard a bang, something had hit my window, I’ve no idea what it was, but decided to put the chain on the front door, open it and tell both my neighbour and his companion that if they didn’t move I would be calling the police.

They dispersed, with me wondering once more how my drunken neighbour was able to get down the steep steps to his flat without falling and breaking a limb or two.

In case you are wondering why I’ve done nothing about the aggravation I’ve had from my downstairs neighbour ever since I moved here. Well, I have tried, but the Housing Association have not been at all pro-active. The most they have done is to get my neighbour to sign an agreement not to harass or speak to me. Which sort of works when he is sober, but as that seems to be a rare occurrence, in reality it’s not very affective.

Involving the police has been equally futile, they are only willing to take action if there are independent witnesses. Which due to my decreased care hours is a rare event.

So whilst I have some security again, I don’t feel as safe as I’d like to be and I’m still very keen to move as soon as possible.

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Everyday Life, Housing

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Inconsiderate Cyclists

As a car driver in London, cyclists are not my favourite people. I find the way they ride aggressively and in packs quite disconcerting, and their disregarding of red lights and the rest of the Highway Code appalling.

When I could walk, albeit using an elbow crutch, I had several encounters with cyclists riding on pavements and was knocked over twice. Neither cyclist cared about what happened to me – just riding off swearing because I didn’t get out of their way, dispute the fact they were in the wrong.

A few days ago on my way across London I decided to go shopping at the largest Marks & Spencer store in the capital. There are five Blue Badge Bays at the rear of the Oxford St shop, luckily I only had to lurk for about 20 minutes before a space was free. I manoeuvred into it quickly as other cars were also waiting.

It was only when I got out of my car to unload my wheelchair that I realised I was going to have a problem, a very inconsiderate cyclist had chained his bike to the post displaying the Blue Badge signage. This meant that getting my chair out was going to be very difficult.

I couldn’t move my car any further back, as that would have meant that I did not have enough space to get my wheelchair out. If I moved any further forward, the front wheels would be over the bay markings and I would get a parking ticket. I contemplated doing that, and then moving my car back inside the bay, but obviously that would mean leaving my wheelchair on the pavement. I was really uncomfortable with that option as I feared my chair would be stolen whilst I was re-parking. I’m not being paranoid, this not unknown.

So I decided to try and get the chair out without moving my car. This was easier said than done, the positioning of bike meant I couldn’t set the chair down whilst standing in front of it, the best and safest way. I had to try and guide it from the side, this was much slower to do, and took more time than usual, causing me pain. In doing this, I had to move round my chair to operate the control used to hoist it. My balance hasn’t been good recently and, inevitably I fell, landing on the bike and injuring my leg.

I was really cursing the cyclist by now! Though I suspect he had no idea at all that he had caused any inconvenience to anybody.

Eventually a kind person helped me up, and I managed to move my chair so I could sit in it and get the electrically operated hoist back into the car. I put the footrests on my chair and went off shopping.

Sadly, my hunt for the perfect small black cross-body bag was not successful and I couldn’t find the sleeveless t-shirt I was looking for either. As I got into the lift to go to a higher floor to mooch the garden furniture (well I might get a flat with a balcony or garden when I move) I was joined by two other women. One was, at a guess, in her late sixties, the other about 20 years younger, and as I later discovered didn’t speak much English. As I went to push the lift button to go up, the older woman pushed my arm away, hit the down button and said; “I’m going to the lower ground floor first, you can wait, you’re in a wheelchair.”

For a moment I didn’t quite know what to say, but then I found my voice, “There is no need to be rude to me, I’m entitled to use the lift as much as you are.” By then we had reached the lower floor and the older woman just glared at me and walked out of the lift. I quickly pushed the button to send the lift upwards.

The younger woman looked at me and in broken English asked what had been said, I just shrugged my shoulders pointed to my head with a screw-like gesture saying, “The old lady was rude and mad.” By now we were at the floor both I and the younger woman wanted, I wheeled out of the lift and drove off towards the garden chairs.

I’ve encountered all sorts of reactions to being in a wheelchair, including the women who as she entered the lift with me on my way down to the store exits, just demanded straight out; “Why are you in a wheelchair?” I gave her a quick, truthful response (as I’ve done numerous times before), which thankfully ended our conversation. But, being regarded as a second class lift user is a new one to me!

However, as Eleanor Roosevelt said; ‘No one can make you feel inferior without your consent.’ So, I held my head up high and wheeled out of the shop and went off to browse bags I could only pretend to afford across the road in Selfridges.

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Blue Badge Bays, Everyday Life

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Patches for Pain

I started taking regular pain killers many years ago, as it was the only way I could control the pain that wrecks my body.

I fought against being dependant on painkillers for a long time, but eventually had to come to terms with the fact that the only way I could control this beast was by regular analgesia.

I tried acupuncture, relaxation, mediation, even cannabis (kindly given to me by the boyfriend of my then flat-mate) but nothing worked well enough to reduce my chronic pain. Eventually my GP suggested I attend a pain clinic, the consultant was very good, recognising my professional background and knowledge, he felt that the only option I had was to try morphine patches.

Deep down, I knew that was what he would tell me. I hoped he might be able to give me details of research outcomes of long term use – I was only in my early 50s at that time – but none was available. Despite this, I decided I would try the patches. I’m really glad I did. They really have made a big difference to my daily life.

The morphine has helped not only with my pain, but also with muscle stiffness. It is not a cure all, I still get pain if I stand for more than a few minutes, try to lift anything heavy or sit in my wheelchair for more than a couple of hours. At times I need to a take top-up Tramadol for break-through pain, especially in cold or damp weather but for much of my day my pain is bearable.

However, I’ve learnt four things that I want to share as I hope they may help others

Always have a spare patch…….

and carry it with you at ALL times. I learnt this the hard way. About a year after I started using morphine patches, I was enjoying a day out with friends when I slowly became away of my pain increasing and feeling very strange. When I went to the loo, I discovered to my horror that my patch was almost off and that it had folded over and stuck to itself!

There was no way I could unstick it. I was several miles from home, and didn’t feel safe to drive. Luckily one of my friends, another nurse, was able to drive me home. I can’t remember much of the journey as I felt a sense of unreality and as if I was going in and out of a series of tunnels.

Once I was home I quickly put on a new patch and climbed into bed, still feeling very out of sorts. My friend told me that I was experiencing morphine withdrawal and gave me much much reassurance that once the new patch had started to work it would soon recover, she also advised me to take 10mg Valium (I have a prescription for occasional use if I get severe muscle spasm in my back) to ensure I slept whilst the new patch was getting into my system.

The next morning I work up feeling fine, and much wiser.

There is now always a spare patch in my bag!

Take spare tape as well

Occasionally a patch came can become unstuck at the edges. Sometimes this can happen if skin is not completely dry when the patch is applied, or if I’m wearing really tight trousers which rub at the patch and cause it to come loose. Just using a strip of tape, can save the day and help the patch to re-attach to my skin. My tape of choice is 3M Transpore, as I find it the least irritant on my sensitive skin.

I also find 3M Transpore great if I’m having a blood test as I’m often allergic to the tape the venepuncturist uses. Supplying my own reduces my chance of skin reaction.

My Wipe is great for removing sticky residue

Once a patch is removed there is always a ‘tide-mark’ left, just as there is with a ordinary sticking plaster. I tried various acetone based removers but they all seemed to cause a skin reaction. Then I found My Wipe on Amazon, it’s it easily removes the sticky residue and doesn’t unduly irritate my skin.

Use Derma Cream to reduce skin redness

This honey based cream is really great, it has many other uses, including helping with wound healing and infection. Again buyable from Amazon

I usually apply it directly after using a My Wipe and it substantially reduces redness and inflammation.

Beware though, it is quite sticky, and washing or using a baby wipe to clean your hands afterwards is essential.

 

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Everyday Life, Hints & Tips, Medical

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The ATOS Form

The Dreaded Envelope

The frantic phone call came a few days ago. My friend *Kim, normally so talkative, could hardly speak. ‘It’s come, I’ve been staring at it, I don’t know how to answer the questions.’ Once she’d got the first words out, the rest spilled out in a torrent; ‘If they cut my benefit I can’t manage. What if they try to send me back to work, I can’t even manage to do my volunteering one day a week.’

I’m really concerned at this, Kim had tried so hard to get a placement with a local children’s storytelling charity. She was thrilled when she was accepted, it was a real boost to her self-confidence. ‘Why, what’s happened?’ I enquire. ‘Since the form came, I’ve gone right back, I can’t cope with anything.’ Was her almost tearful reply.

‘Can I come over to yours? Can you help me fill in the form?’ She pleaded. ‘Yes, of course, come on Monday’ I quickly responded. ‘We’ll get it sorted together’ I heard a huge sigh of relief on the other end of the phone. Then, I was able to talk to her about her children, her son married last summer and now in the US on a work placement and her daughter, A beautiful bright young woman, taking her A levels this year.

A normal mum and kids, you might think. But no, Kim’s children have not lived with her for many years. Her son was the first to go into care, getting involved with drugs and the wrong crowd. Her daughter was eventually long-term fostered by a family member, after a placement where she was physically abused. The woman who has fostered her daughter is the only non-alcoholic, in a toxic family, with two generations of troubled drinkers.

Kim didn’t stand a chance, abused and neglected as a child, she left home to escape, and didn’t make good choices about the men she had relationships with. Remarkably she went to university and got a degree, but the only man she married, and the father of her daughter would not support his family, so Kim left, and never did get any money from him.

I first met her through an ex-girlfriend, who was trying to help Kim look after her children. Kim’s flat was as chaotic as her life had been. I remember Kim being so relieved when the police arrested her then boyfriend for attempted murder. As was I, having felt a coward for not wanting to enter her flat if he was there.

Shortly after that, the children went into care, Kim was determined to get clean and sober, she went to rehab, did really well. She was given a property in a new area, and plans were made for her to get her daughter back.

But then, everything started to go wrong. The house had no hot water, no heating, and Kim had very little money to get basics such as a cooker and a fridge. I visited her daily to give her some support, and despite everything she was cheerful and longing to have her daughter home. There had been short visits, then longer ones, but no overnight stays. Suddenly, the social workers decided that a long bank holiday weekend was the best time for Kim’s 7 year old daughter to return home.

The house still did not have heat, hot water or a cooker that worked. No carpets on the floor and no proper beds, only mattresses. The social workers knew this. Kim was scared, she knew the situation with the house wasn’t right, but she dare not refuse to have her daughter home.

By the Monday lunchtime things had gone wrong. Kim had just had her first sip of alcohol in over 12 months, when her daughter’s previous foster mum turned up unannounced, accused Kim of being completely drunk (she wasn’t) and dragged Kim’s crying daughter out of the house. When I got there 10 minutes later, Kim was sober, she had poured the drink away and was distraught at loosing her daughter again. We couldn’t contact the social workers, our messages were not returned. Nothing could be done until the next day.

Kim was blamed, the social workers not caring that such a quick return was almost bound to fail, especially with the house not suitable for a young child to stay in. This time Kim had no chance, her daughter was to be long-term fostered 200 miles away.

Kim was devastated, started drinking again and eventually went back to rehab. She moved away from London to a small rural town be nearer her daughter. I didn’t see her for a couple of years, till she returned to London, still sober, but having missed the culture of a big city.

She saved what little money she had to keep going north to see her daughter. Her son had a flat nearby and started training to become a social worker, hopefully a better one than those who had failed his family. He and Kim had also become Christians, which gave Kim a new family.

But now, Kim’s world is threatened by an uncaring government, bent on penalising people who are unable to work. Every benefit claimant is being reassessed. The process being run by a government contractor, ATOS who have recently announced they will be terminating their involvement in this discredited process.

All of us on benefits are affected, and some have not survived. Many people have died, having been told only days earlier they were ‘fit for work’ others have committed suicide. Such is the pressure placed on them by this inhuman system.

Anyone newly applying to the DWP for benefits is having to wait months to get the money they need to live on, making people destitute and needing to use Food Banks to survive.

Despite being sober, Kim has anxiety, this is a long term condition, she also has long-standing depression, arthritis, poor balance, vision problems and finds if difficult to concentrate and follow through on tasks.

Individually, these are not insurmountable problems, but all together they mitigate against Kim being able to work.

Hence her fear of filling out the form and being forced to compete for work, with little chance of obtaining, let alone sustaining employment.

Whilst Kim is well read and articulate, she was one of the people who encouraged me to write this blog, filling out the capability for work form has defeated her.

Kim’s creativity, with both words and her artistic skills, are no help. So I need to try and ensure the form is completed in such a way as to maximise Kim’s chances of retaining her current level of benefits.

The prospect if I’m unsuccessful, is too awful to contemplate. Would my lovely kind friend survive, would her long fought for sobriety be lost? All I’m sure of is that until Kim knows that her benefit payments are secure again, everything is at risk.

*Kim is a pseudonym to protect my friend’s anonymity.

The cartoon by Crippen Cartoons is reproduced by kind permission.

 

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Glop on my Scleral Lenses

I’m writing this in the hope that I can find a solution to the glop that appears on my lenses after I’ve worn them for 4-6 hours.

The photo shows some of the problem. I couldn’t get a better image as trying to take a shot of the lens with limited vision whist holding a iPhone in one hand is no easy task! Previous attempts showed much more glop, but the image quality was far to poor to use.

The glop is white and slightly sticky to the touch. It causes me real problems with reading print unless it is both enlarged and bold. Trying to read grey print, for example, is impossible. The glop does really affect any close work I’m trying to do. It makes anything I’m reading blurred, as though I’m looking through a cloud.

Interestingly, it doesn’t affect my distance vision so much. So watching TV isn’t too much of a problem.

I’ve tried taking my lens out (it mainly affects my left eye – the one I had a partial re-graft on last year) cleaning it with Oté Clean 40, and reinserting the lens. But, it seems that once my eye has started to produce this glop it continues to do so and with an hour my close vision is deteriorating again!

Very annoying and leaving me with a limited window in which to use my iPad, do other close work or write this blog.

Any ideas as to why I get this glop and what I can do to prevent it are welcome.

I use a combination of Lens Plus and HYLO-care as my solutions.

Category:

Everyday Life, Medical

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Wanted: Kitchen Fairy

I really don’t like doing housework! Even when I was able bodied I employed someone to clean for me. This was for two reasons, when working long days and often juggling two jobs, I just didn’t have the time or energy, and I was happy to employ another woman who was usually in need of earning the cash cash.

Now even if I wanted too, cleaning hoovering and dusting is just impossible for me either in terms of pain levels, energy and shortness of breath. My cleaner only comes weekly, and sometimes she misses a week, if floors are not cleaned or surfaces dusted, I often don’t notice. When I’m not wearing my contact lenses I can’t see well enough to notice either! Most of my visitors know me well enough not to comment if they spot something amiss.

The only person who does remark on things is my cousin Polly, who at 76 threatens to clean for me if I lived nearer her! Knowing full well that there is no way I would let her! I’ve only just persuaded Polly to stop cleaning for a 93 year old whose clutter was just proving too much to cope with.

The worst household task for me after cooking, is washing up. I have a great little tabletop dishwasher, which is a great boon, but it still needs emptying and stacking. As I don’t generate enough washing up to use it daily, I land up with a pile of dishes waiting to washed. Dealing with them, as well as cleaning the kitchen surfaces and the trays I use (my flat is too small for a dining table) is a task I always put off until I run out of cutlery or plates.

I would rather be writing this blog, answering emails, going genealogy research, catching up up TV, almost anything than having to sort out the kitchen!

As I write this there is a pile of dishes in soak ready for me to deal with.

When I had a carer who also did housework this was no problem, she did washing up whenever she came in. Great, no problems. But my current carer only does care and I can’t get my new cleaner to come in twice a week and some weeks she doesn’t come at all so I’m back to sorting out my own washing up.

It’s not really the time issue, but the pain factor that gets me. My kitchen is not adapted in any way, other than having lever taps. So I either have to stand, a sure way of getting breakthrough pain, or perch on a stool, meaning stretching and shoulder pain. As well as hoping my grip works and I don’t drop anything.

I know what the pain will be, I know I’ll get breathless, I know I’ll be exhausted at the end of doing it and land up lying down in a heap. Hence the procrastination.

But, in the absence of a fairy, even a good elf would do, until someone invents a kitchen robot or droid, I just have to do it myself.

No more excuses, the kitchen awaits!

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Everyday Life

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iPad Holder Update

Standzfree Universal iPad Holder

Standzfree Universal iPad Holder

Back in September last year, I wrote about the Standzfree  iPad holder. I commented about how good this iPad holder was, but also mentioned one flaw in relation to being unable to charge your iPad whilst using it. Now Standzfree has solved that problem. I upgraded my iPad recently. My lovely old original iPad was getting very slow & kept crashing, so I treated myself to the new iPad Air. I’m thrilled with it and love its lightness. But, it cannot be used with my original stand. I quickly discovered that Standzfree has now brought out a universal holder, which works with all tablets and means it’s possible to charge your tablet whilst using it. Just perfect! The two lower grips are fixed but the upper one is spring-loaded, meaning your iPad Is really secure. It holds the iPad Air when it’s in a case very snugly either in portrait or landscape mode. An indispensable gadget for any disabled person.

Category:

Everyday Life, Hints & Tips

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Blue Badge Bay Battle

Council bureaucracy and van drivers who can’t read!

When I first moved to this flat seven years ago I applied for a Blue Badge parking space outside my flat, as on the road where I live there are often more cars than parking spaces. It should have been a simple and straightforward process, I had been granted my Blue Badge by the same council I was applying to for a parking bay. Both processes required that I was unable to walk more than 50 yards.

I was speedily issued with my Blue Badge, but when it came to the parking space the OT who assessed me somehow decided that because I was using a mobility scooter and not a wheelchair I could not be granted a bay. I appealed and the same decision was repeated. So I contacted a firm of solicitors with expertise in such matters and they agreed to represent me under the Legal Aid scheme so I could challenge the council decision by Judicial Review. Several letters were not responded to and it was only when my solicitors were within days of fixing the court hearing that the council caved in and agreed to grant me the bay.

Great, I thought, no more parking problems! But I was mistaken, it seems that a high number of delivery drivers (they are the worst culprits) are unable to read. I often discover that when I’m not parked in the space, they decide it’s a convenient spot to leave their vehicles whilst delivering to my neighbours. So I’m often unable park anywhere near my flat and find myself blocking the road until the parking bay is free. I also find that other Blue Badge holders often use the bay, which they do not need to. Anyone with a Blue Badge may park in any residents bay in this borough for an unlimited period.

Occasionally too, the empty bay gets used by mums driving ‘Chelsea Tractors’ drooping their children off for play dates or parties. They are usually rather more polite and apologetic than white van man!

If I need to park in another residential street I invariably avoid any Blue Badge bay outside someone’s house out of consideration for the person who applied for the bay and therefore needs to use it themselves. I wish others would be as thoughtful.

Sometimes the car using the bay outside my flat has no Blue Badge, which means in theory that I could call the council and ask that the car be ticketed and removed. But, due to cuts neither parking wardens or the pick-up truck work outside ‘office hours’. Thus it can be hours, and at the weekend, days before the car is driven away or is forcibly removed.

Having noticed several other bays in my borough that are now for designated Blue Badge holders only I called the council to enquire how I can get the bay outside designated solely for my use. I was not impressed to discover I have to undergo yet another assessment!

I asked why and was told it was ‘procedure’! I explained that I receive DLA, soon to be PIP, only to be told that didn’t matter I still needed to be assessed. I really cannot understand why. If I’m entitled to a Motability car by reason of having the Higher Rate Mobility Component of DLA why do I need to prove that I use a wheelchair? It is well known that the road I live in is ‘parking premium street’ In council-speak, so why waste my time and the council’s money on paying yet another OT to assess me again?

In September last year I filled in the form and got someone to post it for me. It took seven weeks and four frustrating phone calls to finally get an appointment for my assessment. I was lucky that a friend was able to come with me and that someone in the council managed to get permission for me to park in the Town Hall car park, so I didn’t have to risk getting a parking ticket, as parking in notoriously difficult near the Town Hall.

My OT assessor was a young man, only a couple of years out of college as a guess. I used to employ OTs at work and this one did not appear very knowledgeable. Despite giving him a written account of my Medical History and Medications, he asked a number of questions which indicated he didn’t understand my medical conditions. Within 15mins we were out of the door again, having been told I was eligible for the bay! A waste of time & money for all concerned!

That appointment was in mid November last year. By Xmas I still had no further letter from the council saying when the signage would be amended to personalise the bay.

Eventually, half way through January and after several more phone calls, I got a letter saying the work would be done by the end of February. I was also sent a special permit, which I proudly displayed on my car windscreen. February came and went and still no new signage. During the first week of March, I finally managed to speak to someone who assured me the work will be done within the next two weeks.

Still nothing happened. One Friday however, several bays including the one outside my flat were all suspended. I mistakenly presumed that the personalisation of my bay was about to happen. No workmen turned up and the only other activity was the tow truck taking three cars away. A bonus for the council of £1,000, the cost for the drivers to get their cars back from the car pound.

Again, more phone calls, this time I was given an actual date 7th April. I was told that the suspension notices would allocate a temporary bay for me further down on my side of the road. Whether I can access it or not, of course depends on other drivers leaving the space free.

On Sunday evening, no luck! The space was occupied by another car. I can’t move my car before 8am on Monday morning, as my carers don’t come that early and if I put my contact lenses in at that time I will have to take them out mid afternoon, greatly restricting my day. I managed to park fairly near my flat on the other side of the road.

The first thing I heard this morning when I woke was the tow truck taking cars away. More money for the Council! Eventually at about 11am the workmen arrived and within 45mins the bay was finally personalised, so nobody else should park there in future. If anyone does, the police as well as the council have the power to tow the offender’s vehicle away.

For now, I’m just delighted to have my personalised bay, after 8 months of battling. It will give me greater freedom, I often worry about going out at night, or coming home in the evening, as experience has taught me that is the most common time for non Blue Badge Holders to occupy my bay. All I hope is that others will respect the signage and park elsewhere!

Category:

Blue Badge Bays, Everyday Life

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