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 .

Is your consultant sitting pretty on their pedestal?

I have found that extracting information from consultants is equivilent to having a tooth pulled; both painful and frustrating.

I have a fairly good relationship with my rheumotologist who, for a doctor in the area where I live, speaks excellent English. We talk in English with me translating into French things he is not sure about and the consultation ends up in a lesson. He will ask what things are in English and me asking what things are in French and we take notes!

However, this relationship is marred by the fact I have to ask him if a symptom is connected to rheumatoid or osteo arthritis (I have both and fibromyalgia too.) He often says 'Oh yes.' or annoyingly, 'most probably!'

I am a member of various groups or forums and it there that many of my questions are answered. It is quite upsetting to read the problems faced by so many sufferers of RA. It is a despicable disease that has so many side effects that are often unwisely ignored by sufferers.

I had great difficulty eating, talking and yawning. Eventually I googled the symptoms and of course it was the RA. I spoke to my rheumotologist and he agreed. The same with my neck. I had a very worrying time where I was dizzy even lying down. I went with my husband to the pharmacy to collect his prescription and I fell over. The pharmacist said immediately it was the RA. I had a dizzy spell at the rheumatologist's office when I accompanied my husband and I told him what the pharmacist had said but he wasn't convinced.

He was convinced when I was admitted to hospital with a herniated cervical disc and he treated me for it. That was last October. We had believed it was better but it has herniated again and I have two weeks of wearing the cervical collar, taking higher doses of steroids and painkillers and not moving my neck any more than is necessary. If he had acted a year ago perhaps I might not be in this painful position.

Do we see our consultants as infallible? Are they put on too high a pedestal? Should we ensure we are better informed?

We should see the consultants as fallible, they are after all only human and have choices to make as many of us do. The only difference is they are making choices connected to peoples' lives. The choice they make is the difference in pain or no pain. The difference in mobility or non mobility. The difference is earning a living or not.

They have set themselves up to be revered. As the experts. And people do believe the word of the consultant is final. In doing so they are setting themselves up for a fall; literally. They have to understand that having the title of Doctor doesn't mean mistakes can't be made. Unfortunately, many people who rely totally on the word and actions of the consultant are in the older catagory, those who perhaps don't have access to the internet, or access to the experiences of others who are experiencing similar symptoms or problems. This, when they could be pro active and asking for better treatment.

Becoming better informed means accessing as much material as possible. The internet holds a wealth of information but must be viewed with scepticism. There are many sites that give advice and information with varying degrees of acuracy. There are some advocating treatments that can cure rheumatoid arthritis. As anyone who has RA will tell you, it is possible to go into remission but there is no cure. I, for one, was told that I would have RA for life. Groups or forums give sufferers the opportunity to discuss treatments and symptoms, it also allows sufferers to give support and advice.

Books are also a good source of information. There are books that explain rheumatoid arthritis as to what it is and the medication that is used to treat it. Others are self help books and these I think are much like the websites available. They advocate treatments, diets, supplements and exercises. There are foods that can help as does exercise. Supplements are useful if prescribed by a doctor, I take a calcium supplement as I have a lactose intolerance, my rheumotologist insists I take this supplement daily. There are other supplements a consultant will prescribe such as glucosamine for osteo arthritis, but other supplements can be dubious and it is always advisable to discuss a supplement with your consultant or doctor be taking it in case there is a reaction with any prescsribed medication.

Self help groups bring together people who are affected by the same illness or disease. It is helpful to be able to discuss symptoms and discuss treatment. Knowing that you are not alone is reassuring. A disease like rheumatoid arthritis is disabling and many sufferers feel cut off from society through that disability. Even leaving the house can be difficult and it is a comfort if there is someone to take you to a group once a week or once a month. Some groups supply councelling services, hairdressers, lunches and offer outings.

However you access it make sure you are pro active and find out as much as possible about your disease. In some way it may save you some level of pain and stress.