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 .

Herb garden in progress

I have wanted a herb garden for so long! Unfortunately we have a small garden and a traditional, as I view it, herb garden is not possible so I have had to improvise.

I bought some plants and seeds and started them growing in small pots. They have now started to get big enough to pot on.

I got my grandchildren to help, they painted some pots for me and a jolly good job they did too. My young grandson got a dibber and made holes in some soil in a long trough and we repotted some herbs into that. He tucked the soil round them and then told everyone they had to be quiet as the bubbas were asleep! We have quite a few small baby plants as he calls them in the garden and he won't let people forget they are there. The paintings here are done by the older two grandchildren.

I wanted to grow lettuce too so my husband bought some guttering which we filled with soil and added the lettuce plants and fitted it at an angle to allow for drainage.

I might not have the fanciest garden but I am happy. I have sage, tarragon, basil, thyme, lemon verbona, parsley, chives, rosemary and some others. Gradually I am building up the variety and I look forward to using them in cooking, teas and as medicinal herbs too.

I think getting the children involved is good as they learn such a lot about where foods come from if they have access to a garden. My children did as children and my younger daughter did her Brownie Guide badge in gardening through having a patch of her own.

It is sad that children think all food comes from a supermarket even in this day and age. Luckily the three grandchildren we have here in France live in a very rural community and they are aware of where food comes from. I know my other two grandchildren in the UK will also grow up knowing too, it is just sad that some children don't have the experiences that teach them that food is grown, harvested, sold and then is taken to shops to sell.

I desperately want to eliminate artificial flavourings and preservatives from my diet and growing my own food as much as possible, allowing for the small space we have. Buying fresh food to make meals from scratch goes a long way to knowing what you are putting in your body. Autoimmune diseases are horrid things and the food you eat, whilst not curing you, can help to eliminate some of the symptoms that are suffered.

Should we fight or just go with the flow?

I have had it said to me and read that having rheumatoid arthritis means you are fighting every day.

To a certain extent that is true and it isn't easy being in pain, having stiffness and being so tired all the time. But fighting can be tiring too. The more energy you put into fighting takes away the energy you need just to get through the day.

The energy needed to just get out of bed is an enormous amount then washing or showering if, like me, you can't manage a bath. After that you have to use a bit more energy to get dressed even if you get help. Breakfast for me is porridge which gives me a long lasting energy boost and I eat this with natural yogurt followed by a herbal tea and then my tablets. I cannot rush any of this and need help from my husband to manage them. If I need to go shopping he has to stow the wheelchair in the car, find the shopping bags, draw up a shopping list and get me from the house into the car. By the time I get there and am settled I am exhausted. At our destination he has to find a place to park at our local supermarket as they have had the car park up for a few weeks now and if the two remaining disabled parking places have been taken then he has to park on an end of a row if possible so the chair will get down beside the car. Nothing is more frustrating for me is finding a non disabled driver parked in a disabled space when I am struggling to get into my car when there is insufficient room to get the car near it.

The real battle begins when we get into a shop; any shop. Invariably the aisle I need to get to is blocked by someone stacking the shelves and the wheelchair, with attached trolley, is too large to get by. Then there are the displays dotted around the stores ripe for a wheelchair and trolley to knock down. It is really stressful when you negotiate an aisle only to find you can't get out the other end as a display is parked in your way. And the pillars in the supermarkets near here are erected at the end of aisles too and I can honestly say that it is really, really painful when you have to struggle to negotiate around the pillar into an aisle and you catch the wheels and jar your back, neck and hips. Smaller shops are worse still they are so packed full of stock there is no room for a wheelchair user to get round. But it isn't just wheelchair users people using walkers, crutches and walking sticks are hampered by thoughtless shop keepers and management.

But should we fight to live daily? Or is it better to just look on it as a minor hiccup and laugh it off? I am of the opinion that we should fight for our rights and endeavour to get all shops disabled friendly. But of course this is tiring and a long, gruelling battle. If we just accept things cannot change or will not change then we are giving the impression that we not worth anything better.

When people say that things can't be that bad and really arthritis is just a pain and they get pains too, they are not understanding what people with chronic illnesses and diseases have to cope with all day, every day. Chronic illness is a daily battle to get through the 24 hours of every day and when you get to bed at night pain can and will keep you awake.

Being laid back and accepting whatever life throws at you is a wonderful concept but when you have a daily fight to just live wouldn't it be wonderful if the rest of the world made it just a little bit easier?

I am disabled not stupid

Why is that some people associate a wheelchair with what my grand would have called,'lacking'?

I have had my share of the 'does she take sugar?' mentality but the worst culprits seem to be those you would consider as having a certain degree of intellect. Obviously, from the people I have come across, I was wrong.

We recently went to a well known restaurant here in France. I was pleased to see that there was a ramp outside for me to access the building using my wheelchair and I was greeted with a smile. The table we were given had room for the chair and all was well until I wanted to use the WC. The space between the row of tables where we were seated and a raised platform with other tables was so narrow everyone on the lower tables had to move so I could get past in the wheelchair. The toilets were generously sized but there were two sinks in the main area which were level with my shoulders and I am in a normal sized wheelchair supplied by the French version of the NHS. It was ridiculous. Who on earth designed and built this building? Certainly not someone who uses a wheelchair.

I had to attend a hospital appointment in Dijon which is a good hour and a half from us so we decided to do some household shopping while we were there. The supermarket is situated downstairs in a mall and we parked where we always park in the disabled spaces then take the lift down to the supermarket. We don't often use this one as we have found in the past they don't have trollies that attach to the wheelchair. As we only wanted a few items I was prepared to carry the items on my lap. As we neared the supermarket I was amazed to see a battery scooter with a large basket on the front and pointed this out to my husband. I asked the man at the desk for a trolley that attached to the chair. He replied that I could use the scooter. No, that is for people with reduced mobility not for someone who has to use a wheelchair. So they had to send someone to a place inside the supermarket to get the said trolley. Meanwhile I was asked for identification. Why? Because it isn't a normal trolley. Do you ask other people who are not in wheelchairs for identification? No because they use normal trollies. This is pure discrimination. A male non disabled customer said he would be insulted if he was asked for identification on the basis he was in a wheelchair. A man came down from the office to speak to me and the reason they gave for demanding identification from wheelchair users who use this 'special' trolley is because they only have one and I or other disabled people would leave it in the car park and the store would have to retrieve it!

Now, outside the store 'normal' trollies are left all over the place and not returned to the trolley park. Surely these have to be collected? But to me it is the fact that they are discriminating against disabled people because they can't be bothered to supply more trollies to fit on wheelchairs. The other factor is what are they doing with the identification? I am not at all happy about handing over my driving license or other piece of identity, them keeping it and they could take that information and use it without my permission.

I explained that we use four other supermarkets who have trollies to fit on my wheelchair and all they do is ask that we return the trolley to the desk: except one that has six trollies and these are left outside the store where we happily return the one we use. Today one of these stores did ask if I could supply identification but I said you have never asked before so the lady just let us use it. Of course it was returned to them. Except for the store with six trollies the others all have the type doesn't properly fit a standard French NHS wheelchair and keep detaching themselves another problem to tackle!

Surely the directors of these stores could come up with some way of treating disabled people in a dignified and empathetic manner. Disabled people do not really want special treatment just to be treated like everyone else. Saying that I find in France I have to stand up for my rights as the state and commerce leave me with no other options.

A woman parked her car lengthways behind our car which was in a disabled parking bay. We had no way of getting out and we were prepared to scrape her car if necessary to get out but she returned saying she was only going to be in the shop over the road for a few minutes. No you are going to move that car now, I told her. She backed up a bit and we came out and we reversed so she had to keep on reversing too, much to her annoyance, because we needed to go down a road on the other side. She then put her car back in the same place so no other disabled person could park there.

In another supermarket the disabled toilet is kept locked and you have to ask for the key, this is only found out when you get there to use it.

A large shop near us has a disabled checkout and a 'normal checkout' but the disabled one is kept shut (even at Christmas when the shop is busy.) So, as the wheelchair is too wide for the checkout I have to wheel round, open the barrier to the disabled checkout, go around to the other checkout and struggle to pay the cashier. It is on the orders of the management apparently.

At another store there are two disabled checkouts but one is the size of a normal checkout and as it is signposted as a disabled checkout you only find out when you get there and get stuck in the checkout! The problem is the checkouts are all standard except for perhaps one or at the most two checkouts for disabled, expectant mothers and usually less than 10 items. As expectant mothers and people with less than 10 items can use other checkouts I assert my rights as I have no other choice, as I told a woman the other day. The checkout next to use was empty but she wanted to use the less than 10 items checkout.???? I told her she could use the other checkout as she at least had the choice, unlike me. But she insisted she should use this one as it was for 10 items or less; even though the other desk was free!

The local phone company shop which we have had to visit on occasions has a flight of steps up to it. As my husband wants me to speak to them as no one there speaks English two men have to come and lift the chair with me in it up the steps; something I am not happy about. Surely there is something about health and safety? This is a common occurance as doctors' surgeries often have steps up to them and our pharmacy is the same.

When faced with me in a chair people will talk to my husband, who then tells them to talk to me as it is me who is inconvenienced. They act like I am a complete idiot and try and fob me off but I think they expect me to be like the French disabled who don't stand up for their rights. I will argue the point and not be patted on the head and told there is nothing they can do it is just how it is.

When I see the way huge superstores treat their customers I am shocked and livid. More than once I have said 'obviously you don't want my money. Isn't it as good as anyone elses?' Of course they want my money they just won't make it easy for me to use the shop!

The reasons, excuses and lies they trot out are complete rubbish. I told the man the other day that I fight against my disability every day why should I have to fight to do my shopping? It is a natural thing to do like going to a doctor or a pharmacy. Everyone should have the right to go out for a meal, go to the cinema, go to a concert, go to a café or visit a tourist attraction. But the so called management, who invariably have never had to deal with life the way disabled people do, couldn't manage a drinking contest in a brewery.