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Liebster Award Nomination

WheelchairVista has been nominated!!

Many thanks to the lovely Lucy Lewis of The Thyroid Damsel who has nominated me

The Liebster Award is an internet based award given to bloggers by other bloggers as a way to promote each other and get discovered online.

This great idea first started in 2011. The blogging community is a wonderful group to be part of. I feel truly honoured that my blog as been recognised and nominated. 

Before I take on the tasks that Lucy has set me, I want to share a little about The Thyroid Damsel. Lucy has Graves disease, this is a condition causing an overactive thyroid gland. It is the most common cause of an overactive thyroid , also called hyperthyroidism. It is named after the Doctor who discovered it. Lucy also battles with auto-immune conditions as well as fibromyalgia. Her blog gives an insight into her story and how she is still able to work part-time.

As part of my nomination, I have to answer some questions that have been given to me by Lucy, these are her questions and my answers:

1) Why did you start your blog? Was it for money or for love? 

I started to blog when I was trapped in a flat that was not adapted for my needs. I could only leave the flat with assistance from a friend or carer, so was going stir crazy! I’ve always enjoyed writing and wanted to use my blog to highlight the difficulties faced by disabled people. 

2) What is your favorite thing to do? 

I love travel, getting on a plane to visit unknown cities and countries is always a wonderful experience. I took my first trip as a wheelchair user last year, going to Gran Canaria. I’m planning a trip to Malta with friends next year.

3) If you could achieve one thing in your life, what would it be and why? 

I would make all transport, shops and buildings fully wheelchair accessible. This would make life so much easier for those of us who have no choice but to use a wheelchair or buggy. It would also enable us wheelie’s to actually do things spontaneously, instead of needing to do days of planning. It would also make life easier for anyone who has mobility difficulties and parents with buggies or pushchairs.

4) If you had unlimited money for a week, what would you do?

I would travel, probably to the US or Canada. I would also use some of the money to help other wheelchair users. So many of us now have to pay for own wheelchairs, and that is often beyond most people’s budget. So I would set up a fund that could help both adults and children. I would also want to set up a project to increase awareness about hidden disabilities and conditions. This would also highlight signs and symptoms that can often be missed in childhood, which if they had been detected earlier, made a huge difference to those people as adults. 

5) What advice would you give to newbie bloggers and vloggers? 

Find something you are passionate about and become an expert in your skills.

For me the best part of being nominated is that I get to nominate 5 other bloggers for this award. Here they are:

Heather 

Powered by Love

Heather has been navigating disability one way or another her entire life and has recently become wheelchair user. She has years of experience working with physical disabilities, autism, mental health issues and rare diseases, including issues around global delays and palliative care. This is how she describes her blog: The whole purpose of ‘Powered by Love’ is to create a space for change to occur. If you’re reading something and you feel like it’s time to take on the challenge of living more fully as the person you were made to be, you don’t have to do it alone.

Cece Alex

The Wallflower in Wonderland

Cece blogs about epilepsy and mental health. Her posts are wonderfully insightful and she is often positive in the most difficult of situations.

Katy 

Katy the Night Owl

Due to severe health problems, Katy is 100% house-bound, and spend some of her time – when not inadvertently sleeping – by crocheting, reading, or chatting to all the many friends she has made all over the world. Katy’s posts often highlight social inequality issues. 

Sue

Spoon Shortage Sue

Sue is a Chronically sick mum, sharing with spoonies everywhere. She has a very rare disease called Adult Onset Still’s Disease. Which means she needs to use a power wheelchair most of the time whilst fighting a fever, flu-like symptoms and severe fatigue, all part of her condition. Sue has also taught psychology, so some her postings have an interesting prospective.

Sarah

A Life Less Physical

Sarah was diagnosed with Fibromyalgia in 2009. As a result of this she decided to look for new hobbies that didn’t require quite so much physical activity. After a while, the hunt for a life less physical became an activity in itself.

So my nominees, all you have to do accept this award is: link back to this page to acknowledge your nomination, answer these 5 questions and nominate 5 others blogs for the Liebster Award

1) What do you like about blogging?

2) What is your favorite book?

3) What is your favorite quote?

4) What is your favorite form of social media?

5) If you were President or Prime Minster for a day which 3 laws would you enact? 

Enjoy!!

 

 

 

Confessions of a Reluctant Spoonie

Tania had given me permission to reboot this great post. Please do visit her blog – there are some brilliant posts to read.

Spoonie Authors Network

spoonieconfession

Forgive me, Father, for I have synonymed. Oh, wait, I’m not Catholic or Anglican (both traditions have the sacrament of Confession), I’m Jewish. So, that sort of confession isn’t appropriate. Yet, confession is an appropriate term for where I’m at with being a spoonie. The evidence is there in report cards and in what has been going on in my physical health for the past few years. It’s not a question of confessing to the world at large, but to myself. I spent most of my life suppressing some aspects of who I am, and not recognizing others. Swimming in the Nile, as the saying goes. It is not a healthy place.

The first realization I had to deal with was my gender identity. So, I did that, transitioned, and was overall much more content. The other aspect of myself was not as easy to discern. It was only after…

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Woman was too scared to leave job centre during a heart attack as she feared being sanctioned

A heartbreaking blog post from Kitty S Jones, showing the cruelty and fear of the current UK sanctions regime against disabled and sick people.
Kitty runs both a blog and a Facebook Page.

Politics and Insights

Salena Hannah (Photo: Adam Sorenson)

A woman who suffered a heart attack during a job centre in-work progression interview has said she was too scared to get up and leave to get medical help as she was afraid of ­losing her benefits. Salena Hannah, who works part-time, says that she had the attack during her appointment, but was ignored by the “callous” job centre interviewer.

She explained: “I had been suffering with chest pains for about two weeks and took a couple of sprays of GTN spray, to help with my angina, before I walked in to meet my interviewer.

“My job is under 16 hours, so I am forced to attend regular meetings, or my benefits might be stopped.

“I was feeling some really bad pains in my chest and I told her at least two or three times that I was in agony, but she was just so callous, she just kept…

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The NEC acted unlawfully

This is such a great post and so elequently written. Thank you for writing it and sharing what needs to be said

notsoloonyleft

Five members of the Labour Party took the NEC to court. They were funded by a crowd funding page. They said that the NEC were acting unlawfully in applying a retrospective ruling on who was eligible to vote in the leadership election.

In brief, at the recent NEC meeting at which a private vote was taken to see if Jeremy as incumbent leader could be on the ballot paper for this leadership election there was an additional issue raised which was not on the meetings agenda.

This was raised after Jeremy left the meeting and some of his supporters had left.

The issue concerned who was eligible to vote in the election.

The result of this discussion was that anyone who had joined the Labour Party after January 12th 2016 was not eligible to vote in the election. Anyone who wanted to vote would be able to pay £25 on…

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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.

 

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. 

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!

Corneal Rejection Update

I went back to Moorfields last Friday for my check-up. This was to find out if there had been any improvement in my graft or whether the rejection diagnosed four weeks previously had continued. When I saw the Registrar he confirmed what I had thought, there was no improvement and I would need to have a re-graft. My previous graft on that eye was 22 years ago, so I guess it’s done me well.

When the Consultant came to discuss the surgery with me, he explained that not only would he be giving me a new corneal graft but that he would also be removing the cataract which is also growing on my right eye. I didn’t realise that it was possible to do both procedures at the same time. He reassured me, but did remind me that the chances of graft rejection are higher when having a second graft. I completely forgot to ask if he will also implant a lens, but I’m due to see him a couple of weeks before the surgery, so I will remember to check with him then.

The surgery will not be until September. That was partly my decision, as my daughter was abroad when I had the partial re-graft on my left eye last year, and she very much wants to be with me because of the poor nursing care I had last time. She will not be home until next month and I also need the time to try and get my care package increased for my postoperative period. All of this is complicated by the fact that I will have to been in hospital overnight again as I will be having a general anaesthetic. I have previously had severe reactions to local anaesthetics.

I’m not worried about having a general anaesthetic, but am very concerned about my post-operative care, as last time nursing staff did not understand my need to use my wheelchair for all mobilisation, that my balance is poor and that I have restricted movement and poor grip in my left arm. So I need help transferring from bed to wheelchair and back again.

Because of my concerns, I spoke to Jasmine, the lovely Specialist Nurse at Moorfields and she has given me contact details for the Specialist Nurse at St George’s Hospital in Tooting, South London, where my operation will take place. This will enable me to talk through my needs and hopefully meet with ward staff so that they understand how I should be nursed. Even though my daughter will be at the hospital with me, I don’t want her to have to be battling with nursing staff to ensure I get appropriate care.

Following my partial re-graft surgery last year, my surgical care was excellent, but nursing staff had no idea how to care for someone using a wheelchair who also needed help with many activities. All of this was complicated by the fact that my operated left eye is the one in which I have most vision, so immediately post surgery I had very little vision, which the nurses failed to take into account when they wanted me to do things, such as going alone to a room at the end of the ward that I couldn’t see well enough to navigate to. Also, despite telling staff I was Jewish, the breakfast I was offered was a ham sandwich!! It seemed very difficult to provide me with anything more appropriate. My letter of complaint did not get a particularly re-assuring response, hence my apprehension.

But until I have my surgery, I will be enjoying the lovely summer weather and spending as much time as I can getting out and about.

I would also be interested in hearing from anyone who has had both a corneal graft and cataract removal at the same time.

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!

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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