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Archive for July, 2016

Moving Miracle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Everyday Life

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How my life has changed

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

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

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

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

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

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

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

 

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

 

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Everyday Life

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Why the break?

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

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

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

More vision problems

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

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

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

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

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

Starting a new relationship 

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

Caring for Judy

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

Study and obligations

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

Moving home

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

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

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

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

 

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Everyday Life, Medical

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A Trip to the Countryside

 

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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Medical

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