Always interesting, often different

Why the break?

08/Jul/16

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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Everyday Life, Medical

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A Trip to the Countryside

05/Jul/16

 

Sadly I didn’t get to ride the horses!

As readers of my blog will know I’ve had several eye surgeries in the last few years. This year I wanted to be free from hospitals and operations. However, my body had other ideas! 

Whilst my mobility is compromised by both my spinal arthritis and my poor lung function, I can usually stand and walk a few steps without too much pain. I take regular analgesia and my pain levels are usually well managed. But my balance is poor and a few days after a fall in September last year, I experienced a severe pain in my right leg, I was unable to put it to the ground without excruciating pain and soon I had the pain when I was sitting or lying down.

Fortunately I was seeing a Rheumatologist as a follow up after a steroid injection into my left wrist (for pain due to having to try and carry trays of from my kitchen), this was also remedied by getting extra care hours, so I didn’t need to carry stuff. When I went to what should have been my discharge appointment, the Consultant agreed to send me for an MRI. I waited in vain for the appointment, but he was a locum consultant and hadn’t done the referral correctly. Several phone calls later I finally got my scan. When the result came back it was as I had expected, I had a trapped nerve. However this was complicated by a cyst between two of my lower vertebrae L4/L5. 

According to what I understand is now NHS standard protocol, the next step should have been to refer me to the local MSK (Musculo-Skeletal) Triage Team. This is a group of specially trained physiotherapists who decide on treatment according to various treatment pathways. See here for an example of how this works.

I knew that the only way my pain would be resolved would be by surgery and there was no way I wanted a referral to my local hospital. The last time I was an inpatient there following cancer surgery I got a hospital acquired infection which caused wound healing failure and meant that my shoulder wound became so deep that my scapular was visible. The wound took over 15 months to heal. I also knew that weeks waiting for appointments to professionals who couldn’t help me would have a negative impact on my health and well being. More concerning, I had also began to experience peripheral neuropathy, ie numbness in my feet and I knew I needed treatment quickly. This also was affecting my balance, which made any walking really scary. 

One of the advantages of working as a Nurse (my former profession) is that you get to know an awful lot of medics, one in particular came to mind. She had worked for many years at RNOH in Stanmore, a world renowned orthopaedic hospital that specialises in complex cases. I was well aware that I would qualify for treatment there and discovered that I could get referred directly by my Rheumatologist. That should have been a simple letter and the sending of my MRI scan, but in the way of many NHS referrals there were several hiccups, letters not being done, the scan getting lost between the two hospitals, in all it took 3 months before I was finally seen at a wonderful state of the art building in central London.

As soon as I met my consultant I knew I had the best person possible. I had a scan just 30 minutes before I saw him, I had my medical history taken by his Registrar and underwent a rather painful examination, (it took me three days of complete bedrest to recover) the Registrar was very apologetic, but I knew he needed to examine me fully. Then I got to meet my consultant, he immediately pulled the scan up on his computer screen, and took both me and my partner Eve through the images so I could understand exactly what had happened and why I was in so much pain. 

We agreed a treatment plan, I was to be admitted as a day-case so that my cyst could be aspirated to see if that would lessen my symptoms, this would be done by guided imagery and I would also be put on the waiting list for full spinal surgery. 

I quickly got the appointment for my day surgery. I was admitted into a lovely private room, and was taken down to the imaging department where I was placed on my front, given some wonderful short acting anaesthetic and the next thing I knew I was being wheeled back to my room. A few hours later my lovely friend drove us back home. Over the next few days I noticed some reduction in my pain, but that wasn’t sustained, so I was thrilled when I got a surgery date for four weeks later. The date could not come soon enough!

As preparation for my surgery and to prevent MRSA I had to use special body and hair wash, nose ointment and some ghastly flavoured mouthwash! I decided to drive myself to the hospital as there was lots of available car parking and I knew I had friends who could drive me home again. I was admitted to a main ward and promised a side ward after my operation. I had previously been sexually assaulted when I was on an NHS ward by a male patient and am now very nervous of being in mixed sex wards. Whilst there were separate male and female bays, they were adjacent and I did not feel safe.  

The staff were incredibly understanding of this, and one of the Senior Nurses, who was on the hospital safeguarding panel, asked if she could talk about my situation, anonymously, to the panel. I agreed and I hope the way staff supported me would help others who had may have had similar experiences.  

The RNOH could be described as somewhat ramshackle. It is set in 112 acres of green belt to the north of London. It was first built as a hospital just before the WW1 when it became an emergency hospital for the military and also began to house disabled soldiers in 1918. In the 1930’s the hospital became known as the leading centre for the treatment of Polio and TB. Come WW2, lots of Nissan huts were erected to house civilian patients and war casualties. Many of those huts are still being used, with long interconnecting weatherproofed corridors. Some of the corridors are really steep due to the contours of the surrounding land. When I went to theatre my bed was pulled on an electric truck operated by a porter, even the wheelchairs the porters use have electrical assistance. I had been well advised not to have my surgery there in the winter. It looks as if the latest lot of plans for redeveloping the hospital may finally come to fruition, I really do hope so.

Despite the difficulties of the building, everywhere was spotlessly clean and the care I received was wonderful. Firstly the ward I was on had enough staff to care for the patients, a rarity in today’s NHS. All the staff I met treated me well, they understood and accepted my limitations and gave me good personal care. Pain relief was offered regularly and every nurse who came into my room checked my pain score. There were no issues about giving me my own top-up Diazepam for the muscle cramps I sometimes get, in other hospitals I’ve had major difficulties about getting it prescribed and given. The whole ethos of the ward was that everyone cared for the patients. Domestic staff as well as Nurses of all grades were friendly and professional. The one downside was the food. The menu was well designed, but the food was not good quality and it was very repetitive, with the same choices each day. I was glad of the extra treats I had taken with me. 

My surgery went exactly to plan, although it took longer than expected due to the difficulty of removing all of the cyst. I spent my first post-operative night in HDU, which is routine for RNOH surgical patients. My previous HDU experience had not been good, to say the least, so I was slightly apprehensive. But I need not have been, my care was great, I was given enough analgesia, and I did manage to get some sleep. The next day I was back on the ward and in my lovely side room. Although the room was small, I always had easy access to my wheelchair, even though staff had to bring it from another area on the ward, and then had to manoeuvre my bed & open both doors. I never had to wait to use the loo and staff were always on hand to support me when moving from bed to chair. 

I saw both Physiotherapists and Occupational Therapists. The Physio was great, and she didn’t push me to do things I couldn’t do, again a new experience, I’ve previously felt very bullied by some Physios. Even the Social Worker came to try and get my Local Authority to sort out my Care Package, this will be the subject of another blog post.

My partner came to see me each day and our Rabbi came to visit too, which was wonderful. By 5 days post-op I was ready to go home. Our Rabbi’s husband came with my partner to drive my car home, the journey was not too painful, other than going over the dreaded speed bumps along our road. I was really glad to come home and see my lovely cats, who seemed pleased to see me. But my biggest treat was a takeaway from our favourite Chinese accompanied by a large glass of wine. Desert was some scrumptious champagne truffles Eve had brought for me.

I’m writing this two days later, my pain levels are reducing, I’ve even reduced my pain killers, but I still can’t spend much time in my wheelchair. But it’s so great to be home. 

 

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An unwanted encounter

03/Jan/16

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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Everyday Life

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Dating Scam

24/Jun/14

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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Corneal Rejection Update

23/Jun/14

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.

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Medical

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Frustrating Friday

11/Jun/14

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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Dating and when to tell………

26/May/14

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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Comment, Everyday Life

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Right Corneal Graft Rejection

25/May/14

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The Gate

24/May/14

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Everyday Life, Housing

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Inconsiderate Cyclists

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

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

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

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

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

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

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

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

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

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

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

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

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

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Blue Badge Bays, Everyday Life

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