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Posts tagged ‘Wheelchair’

The Bathroom Saga – Part 2

‘Twas on a Monday Morning……………..

This wonderful Flanders and Swann song seems to sum up everything that happened with actually getting my bathroom works completed!

I agreed with the contractor to have a Monday morning start as the work should only take three days. The bathroom was cleared of storage units, cleaning stuff and the cats litter tray.  I had woken early and although I wasn’t yet dressed, I was respectable enough for the contractors to arrive between 8 & 8.30am. By 9am I was feeling rather cross and phoned their office. I was told that I should have had a phone call on Friday. The Friday call should have explained that there had been a delay on a previous job and the workmen would not get to me till Tuesday. I was not happy. Later that day I was told the men would arrive ‘first thing’ on Wednesday. This was not looking good.

First thing on Wednesday morphed into lunch time. Eventually 2 men finally put in an  appearance. One spoke some English, the other very little. They began by laying a protective cover down over the walk-way into the bathroom. This was great for preventing dirt being traipsed everywhere. The cats however, were not impressed. Their paws stuck to the plastic. They spent the next few days walking around the edges. 

Soon the bathroom floor was ripped up and the preparation work began. Thursday morning started with the new radiator being installed. The cupboards were fixed to the wall. Finally my shower seat was moved and attached at the correct height. For some reason this last task turned out to be quite difficult. The adjustable legs were different lengths and one had to have a couple of inches sawn off. Eventually the seat was low enough for me to sit safely on it. 

The next job was sealing the holes between the floor and the skirting board. Then a special concrete-type underlay could put down. This stuff stank! The smell was very like that disgusting smell you get in male urinals when they have not been cleaned properly. Fresh air spray failed to get rid of the pungent aroma!

I landed up burning a heavily scented candle for several days. 

Whilst the underlay was being smoothed into place the loo had to be removed. Even after the loo was re-fixed we couldn’t use the bathroom until the floor had finished drying. Inconvenient to say the least!

The final task was the measuring of the floor area so that the flooring could be laid on Friday. When the sub-contractor arrived to fix the flooring in place, he told me that the previous days measurements were incorrect. What! How? He didn’t know – not his job!  The flooring he’d brought with him was not just not big enough to fit my bathroom. I was furious. Demanding, through clenched teeth, as to why he couldn’t just get some more that was the correct size? The answer to that was that the supplier was too far away for him to collect it. He was also booked into another job that afternoon. Also he didn’t work on weekends! I told him I expected him back first thing on Monday morning, to which he muttered something about a another booking. 

I tried to calm down before I phoned the main contractors. They did not understand why the subcontractor had left my flat. Thirty minutes later a very apologetic boss was on the phone to me. He was grovelling. He knew his firm had got things badly wrong. He told me there would be no charge for the radiator, which would save me some money. But also informed me that the fitter would not be back until Wednesday morning. I was glad about saving the money, but very annoyed I wouldn’t be having a shower until the following week.

I cannot easily have a stand-up wash, so had to resort to using baby wipes and dry shampoo to feel half decent. I chose not to go out anywhere either as I felt so self-conscious about not being able to have a shower.

I couldn’t wait for Wednesday to come! I was so relieved when the fitter arrived with the correct amount of flooring. Thankfully, the disgusting aroma had almost disappeared. The flooring was laid quickly and well. All I had to do now was wait 24 hours for the sealant to fully dry. 

When Thursday morning came, it was wonderful to be able to have a shower after 8 days without one! Having the warm water cascading over my body was bliss. Having clean hair was such a relief too. I was even able to shower alone, just needing help to get from the shower to my wheelchair. 

The other joy of getting the bathroom done was being able go get rid of the shower curtains I hated so much. I now have beautiful leafy curtains which tone well with the darker flecked flooring, deliberately chosen to reduce the visibility of marks or hair dye. Now that the flooring is correctly laid the shower water drains away quickly, longer leaving the floor like an ice rink. 

I’m so happy and relieved to have a beautiful almost new bathroom, which finally looks good and is safe to use.

 

 

 

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Everyday Life

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Why this election is personal

The disability vote and why it matters

The UK is now in the midst of a General Election campaign. I have been a political activist in the UK and US since I was 14, and this time is no different. I’m involved in organisation and campaign strategy. I also manage several social media accounts to support our local candidates. 

I’m doing all of this because I want a change of government.

But for me, this is not just about voting Labour, a party I passionately believe in. A party that has the best policies to give us greater equality. In Jeremy Corbyn we have a leader who seeks a great distribution of wealth, and goverment for the many, not the few. The election is also about what this cruel and heartless government and the two preceding ones have done to disabled people.

Almost 19% of UK citizens have a disability. For most of us, we were either born with the disability, or we have become disabled having worked for many years. Those of us who have congenital conditions often suffered as children. Sometimes through neglect and sometimes through ignorance. Those of us who have acquired disabilities frequently find that even though want to work again, even part-time, that option is not possible. 

I have one friend, A GP who used to work with drug addicts. He has had a stoke, and as a result needs a wheelchair to get around. But his home is not wheelchair accessible, so he is denied a wheelchair. If he had a wheelchair, kept in his car or in a garage, he would be able to work again. But this is now denied him. All his years of training and expertise have gone to waste. He cannot afford to move, as he can’t get a mortgage because he’s not working. 

I have another friend, she has a congenital condition, and experienced a abusive childhood. She has trained as an actor and voice coach. Most of her work opportunities are in London. But she can’t afford to live here. So she struggles to survive on part-time hourly paid jobs with no security. She is also in constant pain and cannot afford ‘time out’ for the surgery she needs.

These storied are replicated all over the UK. I know other people who could work part-time, but cannot get the care support they need to enable to be employable.

So this election is personal for me and for my disabled friends. We are asking to become valued members of society again. It is wrong to view us as scroungers or cheats. We have skills aplenty – but need accessible transport and work environments. We need employers to treat us, and all workers, fairly. Did you know most people who use food banks are actually in work?

We need an NHS, free at the point of delivery that is run for the benefit of patients, not for managers or private companies bidding to run services. We need more nurses, especially in mental health, who are paid properly for the work they do. We want properly funded schools for our children and grandchildren. The money this would take can easily be found if companies and Tory backers no longer have ‘sweetheart tax deals’.

The only way that can happen is if people vote out Theresa May and her cronies.

Disabled people are becoming more involved in this election than ever before. My next post will give the story of what’s happening. 

 

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Everyday Life, Politics

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New Name

Recently I decided to re-invent this blog with a change of name.

Wheelchairvista had been the way I’ve seen myself for the last 5 years. Being in a wheelchair is the only way I can ever live my life. I know that will never change. So my life vista is now from sitting down.

Whilst hosting my blog via WordPress is great I don’t want my readers being hassled by unwanted ads. Also to get more people reading my words of wisdom – or otherwise – self hosting my blog is a better option. 

I looked at some of the new domain names out there .eu would have been great, but others have voted us out so that didn’t make sense any more. Choosing .london seemed too focused on where I live. Then as I scanned down the options I saw .life and knew I had my domain. 

This is my life – in many ways it’s a life I like and enjoy. 

Yes, I’m restricted – often by money – but then so many others much worse off than me. Often by ridiculous bureaucracy, but that can happen to many people. It’s dealing with low energy levels which for me is the hardest thing to do. 

I do have pain, but providing I’m sensible about what I do and take extra meds accordingly, I can manage to do the things that matter most to me. 

So wheelchairvista.life is exactly how life is.

 

 

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Everyday Life

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Moving Miracle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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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 downsidewas 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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Frustrating Friday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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Why the difference?

This week I’ve had two very different shopping experiences in two major store chains.

Food shopping is never my favourite job, I order on-line as much as possible and I try to avoid busy and crowed times. Usually my shopping helper is my neighbour’s teenage daughter, she has Aspergers, and is a good helper, her traits mean that she knows my routine and remembers it. So shopping without her isn’t easy, but her Mum is ill and needs her daughter at home right now.

So, off to Tesco’s on my own for a quick shop for perishables. I use a local big store, which does have one motorised buggy with a large basket, but even if I use it I still can’t reach items on low or high shelves, so I still need a helper. Also, even if I can park near enough to stagger to customer services to collect the buggy, it has to be fetched from another part of the store, which can take up to 10 minutes, I can’t stand for that that long and there is not seating available. The buggy used to be kept by customer service, and I could sit in it it whilst the key was found. For some reason I could never fathom the key was kept somewhere other than the customer service desk! When the buggy was moved I did email the manager, explaining that the new arrangements would make it difficult for both myself and other disabled people, but got no reply. That was a foretaste of my shopping experience.

When I got to the customer service and asked for an assistant to help me shop, the first response I got was; “Why can’t you just use the trolley that attaches to a wheelchair?” When I explained that it only worked for manual wheelchairs (which I knew from trying previously) I was greeted with a blank stare. So, I asked for the assistant again, and with a big sigh, the woman on the desk sent a Tannoy message out, I was glad I was sitting in my wheelchair as it took over 10 minutes for someone to come, and then the man who arrived looked at me, spoke to the woman on customer service, and walked off, without explanation! A few minutes later he came back, and grunted he was ready to help.

My assistant was a man in his late twenties, whose first language was not English, and whilst I’m used to employing people from many different ethnic backgrounds, having managed nursing homes for over 20 years, I reckon my communications skills are pretty ok, but the guy helping me seemed to not understand me at all. Whatever I said I needed, he didn’t seem to know what it was, at the sandwich counter he didn’t know what a wrap was, and at the sushi bar picked out salmon when I asked for prawn, similarly he didn’t seem to know what Brie cheese was. For other items, he didn’t know where they were in the shop or was similarly puzzled as to what they were. Also, when he took something off the shelf, he didn’t check with me if it was the right item, so I had to constantly ask to check he had picked what I needed.

I was very glad when we got to checkout, where he packed everything well. On the way to the car I asked the man what training he was given, but he didn’t answer, just shrugging his shoulders. I don’t think I was an usual customer in terms of my shopping, I had a list, stuck to it and was as systematic as possible. But somehow nothing was quite as it should be. I felt as if I had been an inconvenience, that my helper would rather have been doing something else, anything other than working and assisting a customer.

Just a week later, 5 days before Xmas, I did my final shop, this time at Marks & Spencer at Kew retail park. My treat for holiday. What a different experience. Although customer service was busy, another assistant came up to me and asked if I needed help, no sooner has she left to go and find someone, another assistant came up to me and asked if I needed assistance. Just as she was speaking to me the first assistant came back and introduced me to my helper. She was probably in her late thirties, English was not her first language, but she understood exactly what I was saying.

The shop was really busy, but nothing was too much trouble, she checked exactly what I needed and found it, often suggesting I wait at the end of an isle so I didn’t need to struggle to get through the crowds. She doubled checked with me that everything was what I needed and even suggested other things I might like to try. There were two things that seemed to be out of stock, one of which was my favourite cherry juice. So, my helper went to the stock room to try and find them, but thoughtfully put an alternative, which was running low in my trolley to ensure I got a fruit juice I liked. The cherry juice soon arrived and we were off to checkout. Again, nothing was to much trouble, I was asked how I wanted everything packed and she made sure no bag was too heavy. There was no need to ask about customer service training, I couldn’t have had more assistance if my helper had seen one of those posh personal shoppers you see on TV at Liberty. I tried to give her a tip, but she wouldn’t accept it, saying it wasn’t allowed. So this is one way I can thank her for her excellent customer service.

Why was there such a difference in the two shops? Was it training, or the lack of it, was it attitude, or just gender, the woman being the more attuned to another woman’s needs. Was it that unsaid word ‘class’?

Well, for what it’s worth, I think it’s a combination of all of those things. As in any organisation, attitudes permeate from the top downwards. I’ve shopped at both Tesco and M&S for years. Even when I was able bodied I was well aware that each of those shops treated customers very differently and that difference is stronger and starker when a customer needs a little extra help to do any everyday task.

I wish I could afford to shop at M&S every time, but DLA does stretch to that, it’s definitely a treat and I cannot buy everything I need there, So I’m forced to shop at Tesco or Sainsbury, but a trip to my nearest Sainsbury about a month ago did not inspire confidence. There is no other large supermarket within reasonable travelling distance.

So I’m running out of options, I have to accept what is begrudging and what, in different circumstances I would not. Just because I can’t be totally independent. If I were back at work, and something similar had happened to a client I would be the first one trying to sort things out. Calling the shop manager, trying to explain how staff should have behaved differently. But, for me, there are more important battles to fight, more urgent things to do, which take up my emotional and physical energy.

Maybe Morrison’s will open a new supermarket in west London, but until then, I’m going to be putting off doing food shopping as much as possible.

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Asking the obvious

I was recently referred back to Charing Cross Hospital to the Rheumatology department for a steroid injection in my left wrist, I’ve been there before and had excellent care from a lovely Consultant who has sadly left.

I was seen by a Registrar who I’d not met before, and for some reason my full notes were not available. So, I gave him a potted medical history; severe spinal arthritis, scoliosis of the spine, displaced vertebrae in my neck, only 50% use of my left arm and 40% Lung function – not smoking related. I showed him a list of my medication, which includes morphine patches for pain relief.

He then asked why I was using a wheelchair………………!!

Which left me rather speechless. I‘m not usually lost for words, but said something like; “Severe arthritis, on morphine, get very breathless, is that enough?”

I got a sort of grunt in reply.

Afterwards I felt really shocked.  Was it too much to except that a senior Doctor would realise why I was using a wheelchair, without needing to ask?

Are my expectations too high?

Or is the NHS not recruiting Doctors of a high enough caliber?

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