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 .

Medication and other options.

I feel very lucky that I have a good rheumotologist. He is French but speaks very good English so we rub along quite well. He has looked after me since I was diagnosed in summer 2008, it is only the rheumotologist who deals with my RA and prescribes medication. My GP is kept in the loop but he doesn't get involved.

Recently I had to see a neurosurgeon recently as I have a trapped nerve in my upper back and a herniated lumbar disc. It was the rheumotologist who had to refer me. Due to the trapped nerve I haven't been able to discontinue the prednisone steroids I have been taking. I am down to 6mg a day but just can't get off of them. I have been told it is the steroids that has caused the diabetes that I was diagnosed with last October so I am keen to get off of them. I have a scan tomorrow on the upper back/neck region to identify the exact disc involved and then I see the neurosurgeon again to discuss an operation. He has promised me that he will investigate the lumbar region when he has sorted out the trapped nerve. I certainly hope so as the herniated disc in the lumbar region is drastically impeding my mobility.

I really detest taking my RA medication, steroids have given me exaggerated muscles, diabetes, affected discs in my back and methetrexate was possibly involved in pneumonia I had twice. I seem to be prone to sinusitis and this then becomes chest infections. As many people with RA I have more than one auto immune disease and all cause me pain.

I decided to dig out my TENS machine and use that on pain affected areas and I find it very useful. My physiotherapist certainly approved. It is just the electronic waves and no drugs involved. I also use heat pads and cold pads depending on the areas involved.

I get a lot of pain in my hands and wrists so I purchased some fingerless support gloves and found these very effective. For the cold weather I wore them with some fingerless mittens. The ones that worked best came up to my elbows.

Last week we had some beautiful weather. It was warm and sunny and I certainly felt much better but today I am in pain again as it is cool, cloudy and rainy.It makes me depressed too when the weather is like this as I just cannot do much if anything. Last week I was, with my husband's help, actually doing things around the house and cooking. Unfortunately I have had to use my food processor more and more to make pastry as rubbing fats in by hand are just too painful. But it is a little price to pay if I can make meals myself. When I can manage to be a normal housewife it seems to help my pain as I am happier and contented. This I think is as much a relief for the RA as anything. I usually take morphine or paracetamol and codeine for pain but last week I hardly took any! Not so this week, I have needed to take morphine just to sleep.

I have investigated music therapy. I am a lover of music of many forms but especially like classical music, Celtic music and rock.

Apart from rock music I find music soothing to meditate to. However it depends on my mood what I listen to. I like nothing better than singing along to Queen in the car on the way to a hospital or doctor appointment. When I was having physiotherapy with my previous physiotherapist we would play Queen albums whilst he worked on my joints. A little elderly lady was in the waiting room when I came out and she looked horrified! The physio said she probably thought she would have to listen to Queen too while he manipulated her knee!! This evening I am having a wonderful time listening to a Celtic concert whilst typing. Music is used a lot in therapy and proved to be very successful too. It can make you laugh and make you cry. It can cheer you and depress you.

Many people would prefer to use non drug treatments but I understand that it is not totally feasible to just have that treatment, it is however helpful to use these alongside regular prescribed medication. I do not agree with people who say that they have a cure for RA by using non drug treatments and therapies. In fact they make me very angry as no cure has been found for RA and rheumatologists will tell patients they will have to take medication for ever.

One therapy I would like to indulge in is walking. I have the herniated lumbar disc, RA affected hips, knees, ankles and feet and am only able to walk very short distances and that is holding onto my husband's arm or my walker. Normally I use a wheelchair; I have both a manual and electric chair. But I am used to this now and for me to spend a day without pain would be amazing.

I have found that my medical people - doctors, physios and nurses are keen to promote non drug complimentary therapies as long as they are use in conjunction with RA drugs. We all have our favourite means of dealing with pain. For me the heat/cold therapy, music, compression gloves and TENS all work well; however, we all have to find what is best for us and cannot tell anyone else they will certainly benefit from works best for us.