Life from my Wheelchair

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Drinking whilst Disabled – Part 1

The unspoken issue

Next time you are out and see a group of disabled people having a meal – sneak a look and see what percentage of them are having something to drink. My guess is that it will be less than 10%. I don’t mean alcohol either, but tea, cofee or juice.

Why? The lack of fully accessible disabled loos.

Recently I attended a conference of political activists. At lunchtime there were three break-out groups, one for BEME, one for LGBT and a third for disabled people. The first two were held on the upstairs balcony of the main hall – which had no lift access. Thus stopping anyone who was disabled and wanted to attend either or both of those groups.

Having got lunch, those of us in the disability caucus started our discussion about how we could be more involved in our movement. It was a good and lively interaction with plenty of feedback for the Chair of the morning session and the conference organisers.

The conversation widened into the difficulties people had attending local meetings. As I looked around the group I realised, that except for one person, none of us were drinking anything with our food. That person has a hidden disability which requires her to drink regular small amounts of fluid. She is also reasonably mobile and doesn’t always need to use an adapted loo

For many of us, especially those with conditions that affect our spine, we have a constant worry about continence. Yes, I know there are now all those picturesque adverts for Tena Lady or similar products. But, for me at least, they remind me of those ghastly sanitary towels I had to wear at school. I found STs really uncomfortable and was very self-conscious wearing then, especially as they often made my skin very sore. I did try some of the various ‘discrete’ pads, when I first had some bladder problems, but felt they weren’t the answer for me.

But there is another aspect to this, almost every disabled person I know agrees there are never enough accessible loos. Even some of the ones that are marked as wheelchair accessible clearly aren’t – or you have to be a contortionist to be able to lock the door. I discovered one like that at a hospital I visited, which specialised in treating spinal patients!

As I’ve been writing this blog I’ve just seen a Facebook post from a friend who has encountered an “accessible” loo with a door that will only close if she leans her whole weight against it. Not easy and certainly painful if you use crutches and have severe joint pain, as she does.

In my experience the worst buildings for having “accessible” loos that aren’t, are hotels and pubs. But in both those locations the issue is often not just getting a wheelchair into the loo but navigating the various doors to actually get to the loo.

On several occasions I have decided to leave my wheelchair outside the door and stagger into the loo. Only to be greated on my way out with “If you can walk why do you use a wheelchair?” As you can appreciate, I often find it hard to give a polite reply. The best response to this question came from a friend “If you’ve got brain why don’t you use it?”

So I knew full well why I and my fellow activists were all staying ‘dry’ for the day. Many had long journeys to get to London and you certainly can’t guarantee that you will find a useable loo on either a coach or a train.

This was highlighted by a Paralympic athlete who spoke of her humiliation after being unable to access a suitable loo on her train journey. You can read the article here.

Yes, we know we should drink more fluids – though I consider the two litres a day advice to be a definite myth. If faced with the option of restricting what you drink or not being able to get to the loo in time – which would you choose?

The second part of this post will give information about the options some disabled people chose to help them deal with bladder problems.

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How (not) to chose a carer – Part 2

Read this before you employ a carer

Until you trust a carer, never leave them in a room alone where you have money, medication (especially if it is opioid-based), jewelry or small valuable objects. I feel so sad to write this, but over the years I have had over £2,000 worth of property stolen as well as money and medication. I’ve had food “disappear” too, as well as cutlery, though both of these items may well just have landed up in the trash.

Some carers can be very acquisitive. I nearly always have a box of things ready for my daughter and grandsons to take home with them when they visit. I’ve had two carers in particular who would always ask if they could take things from the box to send back to their home country. Both knew my daughter and the boys, but would always try their luck!

Employing carers through Direct Payments is an option encouraged by many Local Authorities (LAs). But wonderful as that sounds it can prove to be a complete nightmare. Some of the pitfalls I and others have come across include; not been allocated enough money to enable you to pay a carer the Living Wage. Another issue can be dealing with pay roll, especially if you employ more than one carer. I landed up with a tax bill of over £400 because there had been an error made in calculating my employee’s tax. My carer had given the correct info to the payroll company but they would accept no responsibility and as the employer I had to foot the bill!

Someone I know employed a carer who had previously worked for her via an Agency used by her LA. The carer concerned had been with my friend for over 18 months and she was happy with her. The Agency was closing down so my friend decided to move to Direct Payments. The Carer produced a wage slip with all her details on it, including her NI number, she showed a passport which entitled her to be in the UK, and a valid DBS check.

Over a year later my friend was visited as part of a spot-check audit and to her horror was told the NI number her carer was using was not valid & she was accused of deliberately employing someone who had no right to work in the UK! The carer “disappeared” back to her own country – it appeared she had been using someone else’s documents. The stress & distress this caused my friend was horrendous.

The UK government requires anyone employing a staff to enrol them on a pension scheme, something else that can add a further level of stress. Many LAs have a local organisation that helps with these issues, IPBN is one, but other LAs seem to provide little help or the organisation who in theory helps with this is so underfunded that there is a long waiting list for their services. Another consequence of Government cuts!

There is a great website which is well worth reading if this is something you or someone you know are considering doing.

The experiences of myself and friends who have the cognitive ability and strength of will to employ their own carers are shocking enough, but imagine the difficulty of doing all of this for an aged family member when you live far away. I know many who have struggled with this – and eventually have found everything to difficult and moved their relative into a care facility.

One of the best prices of advice I can give is to suggest people employ Trainee nurses, or Nurses who have trained abroad, but are awaiting their UK registration. My experience is that they often make the best carers, they are motivated and want to learn. Because of my own nursing background I’ve be able to help and support them with written work, or just been there as a listening ear when they were struggling. The other thing I’ve found myself doing is acting as a mentor in helping them deal with difficult clients, family members or employers! This has been great for me as I’ve felt useful again, and I hope it’s given them the support they needed.

Choosing a carer can be a lottery, but if you manage to find a great one, they are worth their weight in gold.

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How (not) to chose a carer – Part 1

Finding the right carer can be like crossing a minefield

I have needed carers to help me for over 10 years now and these are some of the things I’ve learnt.

If you chose to use an Agency you will be able to meet with a number of different companies to see which one is able to best meet your needs.

However, if your care is organised by Social Workers, you or you family will have little choice as to which Agency provides your care needs as this is decided for you by your LA (Local Authority). But most importantly, you do still have a choice over who comes into your home.

If you find a carer disrespectful or rude or they do not understand your needs or provide poor care, you have a right to refuse to have that carer back again.

Because care work is so poorly paid a high percentage of agency carers are from outside the UK. My experience is that many do not either speak or understand sufficient English to be able to meet my needs. And if I’m struggling to work with them, heaven help anyone who is deaf or has impaired vision or speech!

I have spent almost all of my working life employing Nurses and carers from ethnically diverse backgrounds – so I’m well used to making sure care staff can be easily understood by their colleagues and the residents they care for. Also I often had a good number of applicants for each job. However Agencies today are usually so pressured to provide a service that they take on staff whose English is not as good as it should be.

Carers are in our homes for a short fixed time only and they always seem to be rushing to get to their next client. An Agency I used recently sent me a carer who was good – but every time she got delayed at a previous client’s house she missed my visit – leaving me with no breakfast and unable to take the pills I need to have with food. My pain levels increased dramatically, impacting on the rest of my day. After 3 mornings of this – I had no alternative but to ask the agency not to send me that carer again and made the decision to go back to directly employing someone.

The example I’ve just used is fairly extreme, but often it’s been really simple things that carers have struggled with – not burning food – making sure food is cooked properly & served on a hot plate or bowl. Making sure I have the right cutlery. Washing up is a very basic task, but yet I’ve often found that I’ve need to check that dishes and cutlery are washed properly.

I’ve had carers who have refused to do any domestic work, ie cleaning or hoovering, even if that has been part of the work they are contracted to do. I’ve had a carer pull a Dyson so roughly that she has broken the hose – and then denied she had done so – the agency refused to take responsibility for the damage, and whilst I was still arguing with their insurers – the agency lost the contact with the borough I lived in and went bust – so I ended up very out of pocket.

For a time one London Borough where I lived paid a company to undertake shopping at Tesco’s for clients. For the 3 months I used them I don’t think I ever got the right order! One day when my flat front door and step were being painted the delivery guy walked onto the step and left a large black boot print on my carpet and slammed my front door so hard he made a hole in the wall of my hall! As soon as I realised I called the agency & the Council – the agency were less than helpful and I only got a very small settlement.

There are good agency carers, but I no know it can take time for me to find the carer who can best meet my needs. I have used 6 or 7 agencies so far and only one sent me a great carer from the outset, with others I went though at between 5 or 8 people to get someone who was able to care for me properly.

This is the first of two blog posts on this topic.

Part 2 will follow shortly.

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Moving Miracle

For the last 8 years I was living in a flat that was totally unsuitable for my needs. It was in a very expensive area, my neighbour’s houses sold for over £1m. This had the added drawback of constant building works for basements or extensions, meaning on average two lots of builders blocking the road with lorries everyday, on numerous occasions. There were lovely local shops and cafes. But I felt trapped and unsafe living there.

Trapped, because I couldn’t leave the house without support. The front door was narrow, with three steps, I couldn’t get my wheelchair from my car where it lived, into the flat to charge it, without it being dismantled, something my carers had to do for me. Unsafe, because my downstairs neighbour misused alcohol – I don’t think I ever encountered him totally sober. He also had a record of violence and had on several occasions tried to con or force his way into my flat. Both of these conditions were overlaid with mental health issues. Due to his behaviour towards me he was not supposed to interact with me in any way. But the alcohol had clearly affected his memory and he harassed me on a frequent basis.

So going out of my flat or coming back was fraught and very scary. There were times when I would park outside and have to wait inside the car for over 30 minutes before he stopped blocking may way though the communal gate, until he got bored and either went home or off to the pub. I did try and involve the police, but this was low-level stuff and by the time anyone arrived he was usually nowhere to be seen. On several occasions late at night the police tried to speak to him, but he was so drunk when he answered the door that he had no recollection of anything in the last 24 hours!

I got myself on to both the Council and Housing Association waiting lists, as well as applying to various other housing associations, which specialised in housing for disabled people. On rare occasions I was actually offered a flat to view. These flats fell into two categories, they were either not adapted at all and had been totally wrongly described on the relevant websites, or they had some adaptations, but getting in or out of the building was impossible without someone being with me.

On at least five occasions, as a result of being on a flat-swapping site Homeswapper, I found a flat that would have been fine for me, but when the people from the other flats visited mine they either encountered my downstairs neighbour, which ensured they were no longer interested, or my flat was too small for them. There were so many time-wasters on these sites too!! All of which was very frustrating and disappointing.

I really was beginning to despair, I just couldn’t see how I was going to find anywhere suitable to live. Because of all my medical conditions I didn’t want to move outside London, also that is where both my children are based and my grandsons too.

Over the last few years I had received some support from a charity called Elizabeth Finn Care. As part of that I had a yearly visit from one of their staff and on last years visit the person who came to see me told me of a small housing co-op just south of the Thames that had a flat she thought would be ideal for me and for some reason, they had had difficulties letting it.

I checked up the website and contacted them. It took absolutely ages to get any response, I thought the flat would have been let already, but no, by a miracle it was still vacant. I filled in the application form and one sunny winters day my partner Eve I went to see it. The flat is on a lovely quiet street, level access, great adaptations, some of which need updating, and with direct access onto a lovely secluded shared garden. I fell in love with it straight away. But most importantly it is well designed so I can use my wheelchair to get everywhere in the flat.

The kitchen has an adjustable height hob & built-in oven at the right height for me. So I might even be able to cook again. However although the sink is also height adjustable my tumble dryer needs to be underneath it, so there is no way I can do washing up – I’m really happy to leave that to my carers! I also now have a washing machine, which came free with the flat, so no more trips to the laundrette. It makes such a difference to be able to wash & dry clothes etc when I need to without having to wait for a load to take out and then collect days later.

After my visit I had several weeks of waiting, it seemed to be ages before I was called to a meeting of the allocations panel, when I had to put my case and indicate how I would contribute to the running of the co-op. Luckily my professional background means I have lots of transferable skills which helped. My living conditions helped too especially as my old flat by now had large areas of damp which was not helping with my lung function.

When I got the phone call saying I had got the flat, I almost couldn’t believe it!! The prefect flat, in a lovely quiet development, with parking just outside and a garden I could actually use. All I had to do was organise a move. As a child I moved home every 3-5 years and lived with the rule that if it hadn’t been used in the last 3 years it went to charity. This is considerably more difficult when you’ve lived somewhere for almost 10 years. But I was lucky in that I have a wonderful friend who loves helping people declutter, so we had several afternoons work, rewarding ourselves with Chinese takeaways. Our synagogue supports an Asylum Seekers project – so it was easy to decide where my unwanted clothes would go. I had to reduce my books too, that was definitely the hardest part.

I managed to find a removal company who would pack everything for me at a reasonable price, so that was one problem taken care of. Then it was dealing with all the utilities companies, I was infuriated to discover that Thames Water told me I should have had a large discount on my flat because of my disability! Needless to say it couldn’t be backdated, but I will be trying to get it for my new flat. I was certainly pleased to be telling Eon I no longer wanted their services, I had signed up via a deal with Age UK, believed it to be the best, but recently evidence has shown I and many others have been duped, so I’ll be keeping the bills and hoping to get some money back.

For lots of reasons I would be very glad to leave that flat, but when I told my lovely upstairs neighbour I was moving and would be so sad to leave her, she told me she was moving too. I was so pleased for her as that meant she would be free of our dreadful neighbour too!

The housing co-op were very helpful in allowing me access several days before my tenancy officially started so I could get my wifi TV and phone set up before I moved in. Virgin were really great – they look after disabled customers who cannot set up their new equipment very well. I didn’t have to pay any setup costs at all which saved me a useful sum of money.

Moving day finally arrived and with the help of carers at my old flat and Nico and two lovely friends from our synagogue at the new flat everything was moved. There were the usual panics about things going missing, the worst one being my wheelchair charger. My carer swore she had put it into my car with other essentials, but when I asked Eve to get it for me she couldn’t find it – big panic! I managed to find a shop several miles away that stocked the model I needed and Eve shlepped to collect it, only to discover it was at their other branch five miles further away! Eventually she managed to get it back to me and I was mobile again. But, guess what? When Eve moved some final boxes from the car there it was underneath the last bag! Well at least I now have a spare that I can leave in the car for when I’m travelling.

One thing I did decide I needed due to my increased pain levels, as the only position I can get any relief from my trapped nerve is by laying on my side in bed, was to find a way of being able to turn the main light in my bedroom on and off without getting out of bed. A quick scan of Amazon and I discovered a wifi controlled light bulb. I found a lovely round lampshade too and eagerly awaited their arrival. Luckily one of my visitors was tall enough to put both the bulb and shade up for me & it works perfectly! Not only does it switch on and off remotely but I can change the warmth or coolness of the light. So that’s another of life’s challenges resolved.

It has taken quite a time to get everything sorted and put in place so I can find items again. For the first few weeks I really couldn’t believe how lucky I was, despite a boiler breakdown and having a new one installed, also the intercom system decided to die, so more workmen came to install a much improved model.

I’ve had lots of friends come to visit, which has been wonderful & I might even have a housewarming party!

Trying to get my care package transferred and paid for by my new borough, has been a much less simple process, the saga is on-going, and will be the subject of a separate blog post.

The final thing I had do was to get my Mezuzah put up on the door post. A mezuzah is a parchment, or klaf, on which certain verses of the Torah are inscribed (Deuteronomy 6:4-9, 11:13-21). Mezuzah refers as well to the case or container in which the parchment is enclosed. A mezuzah serves two functions: Every time you enter or leave, the mezuzah reminds you that you have a covenant with God; second, the mezuzah serves as a symbol to everyone else that this particular dwelling is constituted as a Jewish household.

One of the last things that was done when I left my old flat was to remove my mezuzah and put it safely in a small plastic bag inside my handbag so I knew exactly where it was when I needed to affix it to my new front door. Most Liberal Jews, such as myself, just have one Mezuzah, but more orthodox Jews place one on the lintel of all the main living and sleeping rooms.

Mezuzahs come in so many different designs and prices. I had bought this one in a traditional Judaica shop in Golders Green (one of the most Jewish areas of London), which has sadly now closed. Mine is very like the one on the image at the top of this post. I was pleased the parchment was intact and I could just transfer it without needing new parchment, as it seem to remember it costing more that the Mezuzah itself!

Jewish custom says this should be done with 30 days of moving, so it was a great delight to have my wonderful Rabbi & her lovely dog come & visit to say the prayers and help ensure that everything was done the right way. My partner shared the ceremony with me and I finally felt I had a permanent and blessed home.

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How my life has changed

Life has changed dramatically for me over the last 18 months. There are lots of reasons for this, including my eye surgeries, having my spinal surgery and moving home. However, the most important thing that has changed for me is that I’m in a relationship.

I’m sharing my life with a wonderful woman, who loves me despite my disability and is not phased by the challenges that it poses within our everyday life. The way we met obviated having that most difficult of decisions, when to tell I use a wheelchair. The first time we set eyes on each other I was in my wheelchair. As we talked I soon discovered that Eve had worked with people with disabilities as well as having worked as a therapist. She was as interested in my pre-disability life as I was in her former career and we soon discovered we shared many interests. I invited Eve to my flat for supper and we both continued to attend at the synagogue where we first met, as well as going out on other dates. One of the first things I noticed was that enquiring about access to venues and arrangements for parking seemed second nature to Eve, one of the reasons I fell in love with her! Having Eve understand my world makes being together as a couple so much easier.

We have been spending lots of time together, I now have a social life again as we’ve been meeting each other’s friends and family. My nursing background had been helpful in giving support to Eve’s cousin who had end stage cancer, until her death. I felt useful again, even though I dearly wished the circumstances were different. Eve and I have found we can support each other in so many ways. I always find it easier to battle for other people than for myself and it’s the same for Eve so we’ve been helping each other deal with the bureaucracy of everyday life.

I’m more tech savvy than Eve so can help with her smart phone and computer, she is my legs when I’m too tired or in too much pain to move. On the nights when I don’t have a carer to get my evening meal Eve can help me cook and it great sharing a meal together and being able to discuss what’s on TV. We share the same political views and we have being getting involved with local left-wing political campaigns.

We’ve been going to music gigs, which has revived my interest in singing and I’m hoping to get chance to sing in a choir again, even if my repertoire will be limited. Another hobby that Eve and I share is horse riding and I’m hoping that Eve will be able to come to my local RDA group with me so I can ride once more.

Life has changed so much for the better. I’m happy again, some of the challenges I face haven’t altered but having someone beside me to share everything makes life so much brighter and easier.

Now with the move and the summer weather (though in England that never a guarantee of sunshine) and the lengthening days I’ve more reason to go out and about.

I’m looking forward to trips out where we can explore both new and familiar places together. I might actually be able to go abroad for a holiday for the first time in 10 years! Life has become so much more worth living.

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Why the break?

I feel I owe the followers of this blog some explanation as to why I disappeared from my blog for 18 months.

There are a number of reasons, so I wanted to list them so you may understand.

I actually thought I’d already posted this explanation, but on checking my blog when I posted ‘A Trip to the Countryside’ yesterday, I realised I hadn’t! So here it is:

More vision problems

This led to me receiving further eye surgery, I had a right corneal re-graft, cataract removal and lens implant in September 2014. Thankfully the operation went very well and I have useful vision in that eye again after several years deterioration. However, my nursing care was not good and sadly led to a complaint, which was only ever partly resolved.

In September 2015 I had surgery on my left eye, cataract removal and lens implant. Because my partner was going to stay with me at home, I was allowed home the same day, which was wonderful and with also having a great carer who came in regularly I was looked after much better than I would have been in hospital.

My operation was very successful and after four months of not being able to drive, I had my scleral lens adjusted and I now have both excellent near and distance vision.

The three months leading up to my op and the six weeks afterwards were difficult. Especially beforehand, my near vision was compromised even before I stopped driving and I found it so hard not being able to read anything unless it was on a Kindle or iPad. Back-lighting together with font and colour changes really helped me. Sometimes using a magnifier worked, but it was always trying and at times impossible to hold a heavy book in one hand and a reading aid in my other, especially as I’ve not got full use of my left arm and hand.

The only saving grace was having wonderful, supportive friends and a partner who helped me so much in so many ways.

Starting a new relationship

I’m going to write more about this in a future blog post, so this section will be very short – except to say that being with Eve has changed so many things for me in such a wonderful way.

Caring for Judy

When I first met Eve, she was helping to support her cousin Judy, who had breast cancer. Within a few weeks it was obvious to me, as a nurse who originally specialised in cancer care, that Judy had only a short time to live. Eve and I decided to prioritise caring for Judy, over everything else in our lives. So for the first eight months of our relationship, our lives revolved around hospital visits, taking Judy out when she was well enough and for her final days nursing her at home with the help of a wonderful carer. Following the funeral our days have were filled with house-clearing and all the other minutiae that follow a death. But we were also mourning a wonderful woman, who had a huge impact on Eve’s life. In the midst of emptying Judy’s house, the sale of Eve’s flat went though and she had lots of sorting to do, so that her belongings could go into store until she found a new home.

Study and obligations

For a number of years I have been studying Judaism. I have a Jewish heritage, but was not raised Jewishly. I wanted and needed to reclaim my history and convert. This has not been a quick process, nor is it intended to be, it’s taken over 5 years, punctuated with breaks for health and other reasons. At the end of 2015 that part of my journey was concluded. I had made a commitment to the community I had joined to do some work for them, this took many hours, which at the time was a wonderful distraction from the extra pain I was suffering, which necessitated the surgery I had last month. I have completed the bulk of the task I undertook and I will only need to do a regular few hours each week with some extra work around the time of festivals. Now I have more time to write.

Moving home

After being on the waiting list to move to a fully adapted flat for over 8 years, through a chance encounter I met someone who knew of a purpose built flat just south of the Thames. I viewed it and instantly knew it was the place I wanted to live, and 6 months later here I am. Moving is an exhausting process in every way, and as I finally get everything into place I’m feeling settled and able to write again.

So in a nutshell, that’s what’s been going on in my life. There have also been a number of ups and downs related to all the stuff that disabled people deal with on a daily basis, some of which I will write about. The current UK Tory government is making life much worse for those of us who are disabled, as well as those unfortunate to be unemployed, or earning a very low wage.

Disabled people in the UK are banding together to help and support each other, we have groups on Facebook and other sites. There are great advice organisations too. I recognise I am more fortunate than many, but want to help and educate where I can.

Some of my future posts will focus on this, as well as aspects of my own life.

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An unwanted encounter

On Friday night I drove to Synagogue as is now usual for me. It is wonderful being able to drive again after a 4 month enforced break, due to cataract surgery.

Eve, my partner arrived soon after and got my chair out of the back of the car for me. Normally this is something I can do for myself, but I have a trapped spinal nerve at present, causing me severe pain on standing or walking – so all help is gratefully received!

After a lovely service and chats with friends, weusually give our Rabbi and her husband a lift home, but this week they were delayed so we left on our own. The Synagogue is just off a busy shopping street, on a bus route and near to a local pub, somewhere I’ve always felt safe.

Eve quickly got my chair into the boot and we were just beginning to reverse slowly out of the parking space adjacent to the Synagogue when I became aware there was something directly behind us. I stopped immediately, and the next thing I knew, a guy was banging on my car window, trying to open the drivers door and shouting he wanted money.

I simply couldn’t understand what was going on. I looked in my mirrors and saw the front and rear light of a low slung car, which had definitely not been there 1 minute previously. There was no way I could or would get out of the car, and I certainly wasn’t going to let my partner do so either. With the benefit of hindsight I reckon he must have been watching us, and deliberately parked where he did to try to ensure we hit him. A known insurance scam.

He had parked in such a way that there was no possibility of me being able to manoeuvre my car passed his and get away from him.

For the next several minutes he continued to harangue us, asking for my address and wanting to record my voice saying I had hit and damaged his car. No way was I doing either of those things! I gave him my insurance details, but that did not satisfy him.

I could see him pacing round my car and shouting and swearing angrily at the person on the other end. Was he phoning for his mates to come and join him?

Eventually he must have phoned the police, he banged on my widow again and demanded I give my address to the police. When I spoke to the police control center and gave them the details, they seemed satisfied, but he clearly was not. I gave him his phone back, opening the car window even a little felt very scary.

I tried phoning our Rabbi to see if she was nearby still, but got no response, but at least my partner was with me, which made me feel safer. I was so pleased Eve was there!

Several minutes later two police officers arrived. They checked my insurance details on the national database, gave him the same info as I had – but looking at his body language, I could see he was arguing with the police. He even tried coming up to my car whilst the police officer was speaking to me and was firmly told not to approach me.

Meanwhile we were getting cold and I could feel my pain increasing, I should have been home and had my meds by now as it was almost midnight – we’d been stuck there almost 90 minutes.

The police told me that they were going to make sure he had driven off so he couldn’t try and follow me home. They were sympathetic and helpful, and said I should have called them the moment he started asking me for money.

At the beginning my brain had just frozen, I had felt scared and trapped and I guess I just hoped he would give up and go away. The policeman said nothing to me either about any damage I may have done to his car, I suspect there was none! When we checked the rear bumper of my car on returning home there was no evidence that I had hit anything!

Eve and I were both glad to get home, and enjoy a restorative measure of alcohol!

Whether anything will come of this encounter, I don’t know. I felt protected by the police and grateful they had ensured my safety as much as possible. But it has made me very aware of how easy it would be for someone to take advantage of a disabled person being on their own in a similar way.

For the next few weeks I will be making sure I have some able bodied friends around when we leave Synagogue just in case he tries the same trick again.

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Dating Scam

As I wrote in a previous post, I’ve started dating again. Recently, I very nearly got caught up in a dating scam, and want to tell others how this happened and warn them to be careful.

I ‘met’ this girl on the lesbian section of match.com, she contacted me, saying she had a preference for being with older women, and that she was fed up with shallow relationships and wanted to meet someone who was serious about having a real and meaningful connection. As this was very much what I was seeking I replied.

We began to exchange daily messages, then swapped email addresses, I used one that does not give my name, but hers was the name she had given on the site. The emails continued daily and we swapped info about our past relationships, what we wanted for the future and found we wanted many of the same things. Her interests in film and TV were different to mine and she was into sport which I’m not, but otherwise we seemed very well matched. She said she lived in London and worked in a para-medical job, in forensic anatomy, and travelled abroad as part of this, which seemed plausible.

The only thing I was uncomfortable about at this stage was the fact that she didn’t want to talk on the phone, something I was very keen to do, as it’s one of the ways I find really let’s me discover more about a possible date. She put her reluctance down to being shy, and we continued to message. I was careful what I wrote, she never knew my address, family name or other personal information.

We ‘talked’ about meeting and fixed a date a week ahead, but I insisted that we talk on the phone first. Then she sent me a message saying she wouldn’t be able to meet that day as she was flying out to Nigeria for work in three days time and that she would be away for 12 days. I asked her to call me before she left for the airport, and she promised she would, but no call came. She also said she was going one her own, not with work colleagues, which seemed very odd to me.

The next I heard was an email saying she’d arrived safely after what seemed like an unusually long flight, and giving me a phone number to call her on. I was somewhat reluctant to call a Nigerian mobile, but thought I would give it a try, it took several goes to get through, and when I did, it was very difficult to hear what the person the other end was saying. Also, the voice sounded very strange, as through voice synthesiser was being used. I quickly ended the call, and went back to emailing!

Then the next day I got an email saying the company she was working for had paid her by cheque and she couldn’t get it cashed until she got back to the UK, and that her bank card wouldn’t work in Nigeria, so please could I loan her some money till she got home?!

My reply was short and to the point! No way would I be lending her money, even if I had it to spare, which I certainly didn’t! She wrote a vitriolic response, which I didn’t dignify by answering.

I was angry with myself for spending so much time on the emails I wrote her every day, and the emotional energy I had invested into what I had hoped might be a future relationship. But very thankful I’d been so cautious with my personal information, and that she or possibly he (the voice didn’t sound very female even with the synthesiser), didn’t know where I lived.

I’ve notified match.com and also posted her/his information on romancescams.org, a free to use site, which gives lots of information about dating scams.

There is also a WordPress blog: romancescams.wordpress.com, which tells stories from people who’ve been scammed and gives support to victims.

So, lots of time wasted and I’m back to trawling the dating sites again. Let’s hope I find a real woman this time!

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Frustrating Friday

The Friday before last was a day of mixed fortunes, emotions and outcomes. Some of which I have no desire to ever experience again!

My day started with being woken up by the scaffolders finally removing the last remaining poles and planks from outside the front of my flat. Great I thought, as I had spoken to the contractors only two days before to ensure the rubbish that had accumulated on the scaffolding and which someone (probably my downstairs neighbour) had been throwing against my window for the last week or so just after the pubs closed, was also taken away. The contractors assured me that everything would be removed and the whole area brushed clean.

Once I had eaten my breakfast, I tried to speak to the scaffolders to remind them to clean up, but as none of them spoke English, I wasn’t sure I had been understood. That was soon proved correct. I had to leave to go for my Moorfields Eye Hospital appointment at 11.30am and I had difficultly walking the short distance from my door to the front gate, the path was littered with debris and junk, some of it had been put in a sack, but this was left on the ground with the rubbish falling out. I was not pleased! Before I started on my journey, I called the contractors and left an urgent message saying what had happened. It wasn’t just the inconvenience and danger of falling over, but I was tried and exhausted from having the stuff chucked at my windows, and scared that eventually one or more of my windows would be smashed.

I drove to the hospital, feeling very unsettled and apprehensive, I would be learning if any of the treatment I had started a week ago had reversed the rejection of my right corneal graft. Stressful enough, without having to deal with the incompetence of the scaffolders. When I arrived, no chance of parking in my usual space, the pub beside it had left out a large number of beer barrels and empty bottles in the parking bay. Definitely illegal, but it would take too long to contact the relevant council and get them moved so I had to find a space somewhere else. The only space I could find was going to be problematical, as I would not be able unload my chair onto the pavement and this meant I was going to have to ride on the road for some distance, not very safe. I parked up, leaving enough space behind me to unload my chair. I checked my mobile to see if the contractors had tried to call me, through having Bluetooth in my car, I should have been able to pick up the call. I found a very brief text message saying the contractors would come back on Monday. I was not happy, and felt I really couldn’t take any more of the disruption to my sleep, so somewhat distressed I called the Head Office for the contractors and made a formal complaint. I was appalled at being lied to and that they had no consideration for my safety, I expected to get a phone call, not a terse text. The woman I spoke to was very understanding, I explained how threatened I felt and she promised that she would get someone to contact me as soon as possible.

Whilst I was making my call, the car behind me drove away and I was just about to reverse my car into that space when a man driving a people carrier drove into the space and manoeuvred his car so that there was only about 9 inches between his car and mine, making it impossible for me to get my wheelchair out. There is a wheelchair sign and a notice asking people to give me room to unload my chair. But it’s surprising – or maybe not – how many people can’t read! I got out of my car and politely asked the man to move, his reply astonished me, he suggested I pulled out of the space, unload my wheelchair, leave it on the road and then park back in the space! I couldn’t believe what I was hearing! I explained that wasn’t a option, and thankfully he spotted another space further up the road and moved. Fortuitously the last car behind him also drove away a moment later and I was able to reverse to the end of the parking bays so no-one could park behind me! So having gained a great parking space I then unloaded my chair, but as I was doing so, the driver of the people carrier came up and started haranguing me. I couldn’t work out the logic of what he was trying to say, and quite frankly I couldn’t care! I just told him quite politely but firmly to go away, and thankfully he did.

I then had to navigate my way across a busy junction with lorries reversing in and out of a building site, quite scary, then drive up on a very narrow and extremely uneven pavement to get onto the wide pavement outside the hospital. I had to drive slowly and carefully as the pavement sloped a lot too, I was worried my chair would tip. I was partway along when a unmarked delivery van came up beside me, mounted the pavement and stopped. He must have been able to see me! I tried shouting, as he went to the back of his van to get out the parcel he was delivering saying I couldn’t get past. I think what he replied was; “tough”, though it may have been less polite. (Which was how I was feeling by now!) Really helpful idiot!

So I reversed along the pavement I’d just travelled, not easy to do, and had to drive down on the road, until I could reach safety. I was so relieved to get into the hospital, but also feeling very jittery. I was terrified as to what I would be going home to, I really felt I couldn’t face another night of aggro from things being thrown at my window, I was nervous as to what I would be told about my eye, after last year, I wanted a year free of surgery. But I had a strong suspicion that my eye wasn’t improving and I would need an operation before the year was out.

I got myself to the clinic and tried to concentrate on reading my Kindle whilst I was waiting for my vision check, but found myself getting even more unsettled. By this time it was almost an hour since my compliant to the contractors and I didn’t want to be taking a phone call from them when I was seeing my specialist. The Care Assistant doing my eye test then started checking the vision in the wrong eye! She hadn’t checked my notes properly and I had to explain what was happening. She then, for some reason unknown, asked where my partner was, Jan (my ex) had not been to the hospital with me for almost 2 years. Our relationship ended 22 months previously, and, that kindly meant enquiry hit a very raw nerve. I just burst into tears. The Care Assistant asked if I wanted to talk to someone, I just shook my head, saying I would go back to reading my Kindle. She disappeared off somewhere and 2 minutes later came back, started pushing my chair, saying she was taking me to talk to someone. My protests were ignored, and I found myself entering the office of the Clinical Nurse Specialist and Counsellor.

It was very strange for me to find myself talking to a younger version of my former professional self. Jasmine was kindness and professionalism personified. She listened to my tale of woe, understood why I was feeling so shaky, and gave me the space and time to get myself together again. I was extremely grateful for her availability and empathy. Whilst I was in with Jasmine, my phone beeped with a text, the contractors were on the way to my flat to clear up all of their rubbish. I was just so relieved. I felt safe again, which was definitely not how I was feeling before I got that message. It would have been nice to have an apology. But knowing the rubbish was being cleared was huge comfort.

It was then back to clinic and in to see the specialist and his team. The verdict was as I expected, my rejecting cornea was very waterlogged, I was to complete my oral steroids and to have stronger eye drops. I reminded the Registrar that I was allergic to preservative, he reassured me the drops he was prescribing would be ok, and that he was also giving me some more ointment for night time.

So, after booking another appointment for three weeks time, I sped off to pharmacy, anxious to get home. The drops were soon sorted, but there was a problem with the ointment, the pharmacist explained they had none available. I remembered from my emergency visit that the Doctor had prescribed an alternative if the one he wanted me to use wasn’t available, and expected the same thing to happen again, only to be told to get a script from my GP. Easier said than done, as it’s hard for me to get there alone because it’s so difficult to park nearby. But I realised I had to try as I would run out of the ointment really soon.

I managed to get to my GP about 20 minutes before they closed, I parked immediately outside in the Doctors own space so I could stagger in on crutches without getting my chair out. Painful (and risking a parking ticket) but necessary. I realised I wasn’t popular asking for a prescription so late in the day, but I explained the urgency and they promised to fax the prescription to the Chemist, whom I phoned as soon as I was home to tell them to expect it. The Pharmacist agreed to deliver it to me the next day.

I was pleased to be home, poured myself a large glass of wine, and begun the hourly regime of drops to my right eye. I noticed very quickly that the drops left a horrible taste in my mouth, and that they made my eye smart. But just thought; ‘Ok, I’ll just have to put up with this, if it helps get my eye better.’ But as the evening went on I began to feel very nauseous, and then started to vomit. By the time I settled down to sleep, I was glad to stop the eye drops and put the eye ointment in my eye instead. I was worried that the vomiting would disturb my sleep, but managed to drop off by about midnight and slept through till 8 the next morning.

But as soon as I started the drops the following morning my vomiting recommenced and continued until mid afternoon when I decided that the best thing I could do was stop the new drops and go back to the drops I had originally been prescribed at A&E.

The main reason for this was that on checking the drops carefully I discovered that they contained preservative to which I’m very allergic. My eye had become very red and painful, which I knew to be a reaction to preservative, as I’d had this before. I debated attending A&E, but didn’t feel safe to drive there and the thought of trying, via an out of hours GP service, to get a wheelchair accessible ambulance was too much to contemplate. I’ve had to do this during weekday surgery hours and the whole experience was so fraught with difficulties, I decided I was probably better off staying at home and trying to get rehydrated.

Gradually I began to keep clear fluids down, then a light meal. By the Sunday morning, I wasn’t at my best, but felt up to meeting a friend to a go and see a wonderful exhibition of Matisse cut-outs at Tate Modern. I was even more grateful for my wheelchair as I was very unsteady on my feet, much worse that I normally am. I had a lovely, but tiring time with my friend and managed to enjoy some rather good banana cake in the cafe. But I was very pleased to get home, and to lay down in bed.

On the Monday, I phoned the Chemist to find out when my new eye ointment was going it be delivered, as it hadn’t arrived on Saturday. I was staggered to be told the ointment wasn’t available due a manufacturing problem. Surely the Doctor who had prescribed this should have known? I wasn’t impressed. So I had to phone my GP surgery to get a further prescription for the ointment I’d originally been prescribed. Luckily the GP I spoke to was very helpful and gave me three weeks supply. This was eventually delivered to me on Tuesday afternoon, which was just in time as I’d finished the original tube.

I also phoned my Consultant at Moorfields, and left a message, explaining what had happened and asked for a call-back in case he wanted to prescribe some different drops. When his secretary called back two days later, she’d not managed to speak to the Consultant, but promised to do so that day and call me back if my drops were to be changed. I didn’t get another phone call, so have continued with my original drops and will be back at Moorfields in 10 days time. I will be making sure that I see my Consultant, not his registrar this time!

As a final swan-song from the scaffolders, their bosses turned up on my doorstep last Wednesday wanting me to sign their ‘Resident Satisfaction’ survey! I will leave you to guess my response!

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