Overcoming isolation

Ever since my computer gave up I have felt somewhat isolated with regards contacting friends and family.

I have been sharing my husband's computer but have to restrict the time I have it and therefore what I can achieve in the time allowed. I had to stop playing games on Facebook and just stop by to say hello to people and wish happy birthdays etc. My Blog had to stop as did my story writing.

I also felt a degree of being left alone regards my arthritis as I have many friends that I made through forums, these are people who understand what people with rheumatoid arthritis go through because they experience it everyday themselves. Having these contacts is vital as some people have no one to share the good times as well as the bad with. They don't have the support that others have from family and friends who, instead of giving the moral and emotional support needed, seem to not accept that the effects of rheumatoid arthritis can be so devastating.

I am extremely lucky that my family are supportive and, whilst not knowing first hand what I experience every day they see the effects on my body and emotions. I have had a bad year with regards my arthritis but felt I was coping with the support of my doctors. However, the beginning of August I had a really bad experience when I had trouble walking and using my left hand, also my speech was a huge problem. Eventually my GP came to the house and he gave me some strong medication to help with pain and increased my steroids which I hate. He sent me for a scan, which came back negative but he then made an appointment for me to see a neurologist and he arranged for a physiotherapist to call at the house.

My speech is still a problem and I get tired but I feel with my physiotherapist's help I am getting good results with regards my left side. The neurologist sent me for an MRI scan and arranged to see me immediately after the scan. He told me I have to go into hospital for further tests as he can see lesions on the brain.

I have spoken to my dear friends on 'the net' and no one gives me advice as in what I should do or what it might be but are there shoulder to shoulder with me. They virtually hold my hand, give me virtual hugs, are shoulders to cry on and most of all just listen.

I felt so lost without my computer and became reliant on posting on Facebook, Twitter (occasionally), a disability site I belong to, sending texts and e-mails on my phone and Kindle. Whilst this is not absolutely ideal I am thankful that I live in a time when we have access to such technology. When I think of the first mobiles which looked like a brick the idea of being able to talk to someone else while on the move was a fantastic innovation. With progress we were able to send text messages so people could reply at their leisure. Sending photographs drove the use of mobile phones even further than ever expected. Then we became connected to the internet via our phones. Searching became as easy as sending a text. Bringing up a map to search for a fast food outlet or restaurant saved the never ending driving round to look for a meal. Going on holiday and keeping appointments is easier as the phone has alarm, calendar with day to day agenda, camera, television, music, film, videos and so much more.

From a huge brick to so much more on a piece of technology a fraction of the size in just a few decades.

Being not able to have access to the technology of today but also having the ability to use it makes me extremely privileged. I remember my grandmother having a fear of using the telephone at my parents' house. She never had a phone and even her television was a black and white one till the end. She had no central heating, an outside toilet, no car and no fridge or freezer. This was in the late 70s.

At the age I am now my grandmother lived a fairly basic life. Her kitchen was a scullery, an old gas cooker, a large butler sink, a mangle, a safe keeper for cheese etc. Her only toilet was outside in the garden and she had no bath. She also had a gorgeous old black range, something I would love myself, in her back room. Here grandad kept his shoe repair kit which included a cast iron three footed last, leather, nails etc. He repaired all our footwear as long as they had leather soles and heels. Her front room or best room, was where she looked after me when I was little. We listened to the radio especially listen with mother and when she got a television Watch with Mother. Watching television was rationed except when the football results came on and when boxing was on as grandad loved those!

I am convinced gran and grandad were content. They owned their own home, were happy there, we spent Christmases there and although she didn't have the range of things we take for granted today what more could they have wanted I wonder.

She essentially shopped locally with two corner shops just a few steps away. A short walk to a butcher and a pub. The Prudential man came to collect for the savings club every week, the milkman called everyday, the rag and bone man with his horse and cart, the knife sharpener who had a whetstone on a barrow and it certainly fascinated the children watching sparks fly, the chimney sweep called when required and made an excellent job of the chimney leaving a fairly clean front room, the pig man called for the swill left out in pig bins and I remember Sunday evenings the Winkle Man came round selling winkles, whelks and cockles eaten with the use of a pin to prise the shellfish out of their shells and served with bread and butter.

She would shop further afield for clothes although for her a good pair of shoes (if your feet are comfy the rest of you is comfy!), a good corset (the foundation of the rest of your clothes) with lisle stockings, and a good coat. To my gran these were the essentials, she never went without her corset at any time of the year. During the day she wore an old fashioned wrap around apron over her clothes.

The street where she and we lived had a street outing every year and they were jolly affairs! She never went far for holidays, later in life she went on breaks with a club but not outside the UK.

So what do we have that she and grandad have that makes our lives so much better? Yes we can order our shopping from our computer or mobile and have it delivered to our houses but don't we miss out on interacting with others that way. I have used it when ill but not often. We can shop from catalogues or web sites but where is the joy of trying on clothes that way? We can do bank transactions on line so no queuing at the bank or meeting other people. You can telephone, text or send an e-mail instead of walking to visit a friend or relative. I remember going to tea with family or friends on  a Sunday or sharing a meal midweek now everyone is too busy to spare an hour or two to get together.

I have cooker, microwave, steamer, food processor, bread maker, fridge, freezer, washing machine, tumble dryer, television, computer, printer, car, central heating, wood burners, wet room, bathroom, Kindle, mobile phone, house phone, DVD player. But could I live without them? I think if I really had to many of them I could live without, as a child I did. I do however have things that I think would have really helped in my grandparents' lives. I have a home diabetes checker, a sleep apnea machine, an electric wheelchair, an armchair to help me sit and stand up, medication to help me in daily life.  But compared to the other list it is short. They walked or took a bus where they wanted to go, wrote hand written letters, went out and met people daily.

Grandma cooked everything from scratch no frozen pastry, frozen vegetables, she made fresh pastry and picked her vegetables from the garden and later bought from the greengrocer, meat bought from the butcher, fish from the fishmonger. I like to do the same except I make large amounts and put some into the freezer for a later date. Our car is essential nowadays, we live in a remote area with no public transport. The village has a small shop, a baker, a post office, a hairdresser, two cafés and two restaurants. Also a number of farms. To get to the doctor, dentist or medical appointments it requires a car to get you around. It is possible to take a taxi but that is expensive. Supermarkets are at least 20 minutes drive away and although they run a system where they will take your order if you hand it in and then prepare it you have to go and collect it they don't deliver that hasn't arrived here yet. We order the oil for the central heating and that is delivered as is the wood for our two wood burners.

I like to meet people and for that reason I like to get out of the house. I have my friends on the internet but people I meet shopping or visiting an event is precious. There is a place in my life for both friends and family I see regularly as well as people I have met through Facebook, my disability site and Twitter. The people are important in different ways. Sometimes it is easier to talk to my online friends than to those I see often.  I have also found that  people come into your life for a particular reason and I make the most of that as it is meant to be.

Knowing I have access to the technology available is reassuring but I cannot become reliant on it. I know it is  possible to live a life free of this technology but it isn't possible to live a life free of good friends and family and I for one will embrace the means I have to keep in contact .

Sitting comfortably?

I had to give in to using a wheelchair a long time ago and we found that the cobbled streets and pedestrian areas here were not very wheelchair friendly.

A lovely medieval town near us has many cobbled areas and my husband has no option but to push the chair over them. The wheels get stuck between the cobbles, I nearly end up falling out and I tell him often he chooses to push me over them on purpose! Of course he pleads that is not true, uuumm! It is very uncomfortable too as the constant jigging about causes pain in my back. It isn't any better with a walking cane either as the end can also end up between the cobbles causing one to trip.

We took a trip to Dijon, the capitol of Burgundy, to see how user friendly it was. The answer is not very.

The main problem is dropped kerbs. The distinct lack of them is evident to people with wheelchairs and pushchairs. We actually found a road with dropped kerbs one side and not the other; very strange and obviously not thought through. Some kerbs are incredibly high and then having to either get the chair up them or down them is hindered by the cobbles; again.

We arrived at a disabled parking space one day to see an ambulance at a doctor's surgery. In France the ambulance system is quite unlike that of the UK. You can book an ambulance or ambulance car to take you to appointments. We watched as two ambulance people lifted an elderly man from the ambulance in a wheelchair and then had to lift the chair with the man in it up a flight of steps to the doctor's office. I am sorry to say that this is not a rare occurance.

We were looking for a bank. It was frustrating to find that so many banks do not have disabled access. It is not restricted to banks. Post offices are also in many instances inaccessible, the one in our nearest town is a point in question and I have to send my husband with a detailed list if I need anything from there or sent. The most annoying and frustrating place was the Tax office. We submit our tax form every year and we would go to the office to make sure the form was correctly completed. But it was a nightmare to get into and because the building was leased they couldn't add a slope or any other entrance. The inside is beautiful as it is a very old house which has been converted. The stone stairs have carvings and ornate bannisters. I, however, have to wait until someone is free to come and see me downstairs in front of everyone else.

Difficulty in access isn't restricted to public buildings. Restaurants are notorious for having bad access. On holiday one year in the Alsace we stopped at a restaurant where I asked if I could get into the restaurant. I was assured that there was no problem; the restaurant was upstairs but no lift! I have had very helpful restauranteurs who have made space for me but I have found it very hard too which does spoil an evening out.

Concert halls are just as problematic. I saw that a favourite band of mine was coming to a big arena near us. I tried to book seats as soon as we knew but they were not going to make it easy for me. I couldn't have the wheelchair as there was no room and I would have to sit on a chair. This is extremely uncomfortable for me but also I actually had to get to the seats in the chair and what would happen to the chair after I had transferred? I couldn't get to the refreshments in the interval and then I had to get out at the end; not at all satisfactory.

Access to shops and shopping is a bone of contention for me. Some shops are so cluttered with stock that there is no room to manoeuvre the chair. Invariably I end uptaking half the stock with me on the chair. There is no room to wheel between aisles due to end stands which protrude into the aisle.

Supermarkets with trollies that fit the chair are very few and far between which means me having a basket on my knees causing a great deal of pain and discomfort. And the checkout! Unlike the UK where all checkouts are the same size here in France the checkouts are all too narrow for the manual chair let alone an electric one. There are one or two checkouts wide enough for my chair but often they are marked for disabled people, ten items or under and for expectant mothers. If you ask if the person if front of you needs a designated disabled checkout they will say that they didn't realise it was a disabled one even if there is a huge great sign there! The checkout cashiers don't help as they will not tell people they can't use them and you arrive with a basket of shopping and they serve someone with a trolley load and give you an appologetic smile. I said to one that it was her job to serve just those deserving of using a designated checkout but she just shrugged.

I have said before that the disabled people themselves don't see this as serious. They just accept that things are the way they are. L'Association des Paralysés de France is set up to support and assist disabled people and their families. However they don't fight for these basic rights that we can access places the same as anyone else, do more that buy a few basic items at one time in a supermarket, go and enjoy a concert, access a restaurant or even submit a tax form. Disabled people are as entitled everyone else to live a normal life. I don't want to change the quaint, medieval towns and resurface them but dropped kerbs is not a great ask. I would like shops to rethink their displays to allow people, like me and you, to shop normally without hinderance. I am not asking for much just understanding and respect. I give people respect if they earn it but I cannot give respect to those who treat me as though my money isn't as good as anyone elses.

I had an experience in hospital that in many ways was quite encouraging. I was admitted with a herniated cervical disc and at first I had to stay in bed because the armchair they supplied was quite unsuitable. It had a low seat and back and couldn't support me. I asked if my husband could bring in my electric wheelchair and they agreed. The difference was amazing, I could get out of bed and sit in the chair giving me a different perspective on the view outside and the room. I was then transferred to a hospital near home to have what was called rest and recuperation. Again I asked for my electric chair and again they said yes. My husband placed it by the bed and I could easily transfer from the bed to the chair, no problem.

One day I was in bed when a lady came in to clean and I was astounded as she tried to lift the chair to clean around it! It won't move she cried. No, it is very heavy because it is electric and has a motor on the back! So she put her hand on the control and pressed the button whereby the chair shot forward into her. Luckily she wasn't hurt but she left the chair alone after that. Sometimes you just wonder where they find people!