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.

Back from the edge

The last few weeks have been rather difficult and I have been on the point of throwing in the towel.

I have developed yet another chest infection. As with the previous ones it started with a sinus infection. I called the doctor and she came out and, after examining me, she prescribed antibiotics, nasal spray and something for my chest as I was coughing a bit.

After almost two weeks I was coughing worst than ever. I saw another doctor and he prescribed antibiotic injections, powders for the cough, some tablets, an extra inhaler and steroid injections. To have the steroid injections I have had to stop the Prednisone tablets I take daily for the rheumatoid arthritis. He also prescribed a course of physiotherapy to help clear the stuff from my lungs. So my day is taken with visits from the nurse to give injections and the physio coming, also I do the exercises throughout the day.

I am hoping that this time the chest infection will clear up. It is annoying that I get the same thing every time and I have to go through antibiotics twice and whatever happens it always goes to my chest. My GP, the nurse and the physio all think that the methotrexate I have for my rheumatoid arthritis is to blame for the chest problems. My rheumatologist however, is reluctant to stop the methotrexate although he is happy to stop the Prednisone and I am decreasing the dose monthly.

I had the methotrexate injection yesterday, Thursday, and as usual today Friday I am exhausted, in pain and very down. I told the nurse and he said that it is very usual to have this and the forums I belong to have posts from people who experience the same symptoms after having the methotrexate. It lasts a couple of days and gradually I get back to normal but I hate Fridays!

I have also been seeing a neurosurgeon with regard back problems that have been with me for years. At the moment he cannot do anything about the problems I have with my upper back/neck area. He has said though that if I have a MRI scan of my lower back he will look at it and say if it is possible to help with that at it is stopping me from walking and doing exercise.

I went this week for the MRI and the doctor at the centre said that it shows bulging and wear and tear. Oh good! So I see the neurosurgeon again in a few weeks for his verdict. Now I know that no one really wants surgery, especially so invasive as back surgery but if it helps me to walk and exercise I am willing to go through it. The alternative is pain and difficulty in sitting, lying and worst of all walking and standing.

I feel that I miss out on doing things with my grandchildren like taking them out unless I have the wheelchair and that restricts the things I can do. I do crafts and cooking, things like that but it isn't the same.

I bought some eucalyptus tea which is supposed to be good for chest complaints and although the taste has to be aquired I am hoping it will work. I also found a remedy for coughs which involves slicing up red onions and letting them seep with sugar, honey or stevia overnight then drinking the syrup; a teaspoon at a time. I haven't got round the doing that but it looks good.

Not feeling up to doing things I haven't kept this up to date  but I hope that the corner has been turned and I can sleep better and find some energy.

Turn up the heat!

Well, the rain seems it will never stop, every time you look out the window the sky is leaking.

Now, anyone who has arthritis will tell you cold, rain and arthritis just do not mix. My hips are so painful and I am pill popping to try and get some relief. A warm house and lovely warm food go a long way to make life more bearable.

We have a wood burner and an open fire which heat the lounge and kitchen which works to a point but the open fire is difficult to keep alight and smokes badly. We have managed, but things took a turn when our son in law came back from his late grandmother's house and offered us her wood burner to replace the open fire. We jumped at the offer and when it arrived we could see it is very solid. The burner is 150 years old and really heavy. We are cleaning it up and arranging for installation. Our son in law said that it took three of them to lift the wood burner and that was after taking out the bits and pieces that are loose inside.  It isn't what some people would call 'pretty' but perhaps I am from the generation that feels as long as it is functional then that is fine!

For us the weather is stopping us getting out in the garden and sorting out the planting. With me, the problem is the wheelchair won't roll over the soggy grass and when it is in position it sinks into the mud. I don't like my husband getting out in the rain, for a period of time anyway, as I can't risk him getting ill. That is for his sake as well as mine. We have seedlings to go out as well as stuff we have kept over the winter. We do have some herbs in pots and are using those for herb salads as well as in cooking but they will need to be replanted soon too. Planting and growing your own produce also saves money, something we are all trying to do nowadays.

We need to get some vegetables planted out very soon or they won't be ready when we need them. Even though we have a small garden we can grow potatoes, beans, onions, lettuce, rhubarb, tomatoes and anything else we can fit i, as well as the herbs. Pots are a brilliant way of growing salads, herbs and tomatoes. I have seen ingenious methods of utilising space and am keen to try them out. Some materials are close to hand or by recycling which of course is encouraged.

I have looked into getting plants, both floral and vegetables, and am in favour of sharing plants between friends and neighbours. We have furnished our gardens many times by cuttings from other people and have given them cuttings in return. Car boot sales are another good place to get plants as many people take cuttings, plants and seeds to sell alongside other goods. We have been lucky enough to grow some plants from seeds or pips in vegetables and fruits we have eaten. It doesn't always work but unless you try!

I am especially keen to get children involved in gardening. Our daughters were always involved in gardening and they were so proud when they saw things they grew on the dinner table. Our grandchildren now show an interest in what is grown. So many children have no idea where food comes from, except the supermarket. I feel they are more likely to eat food they have been involved in producing.

There is nothing more satisfying as planting a seed and watching it grow into something you can pick and incorporate into a meal. In this day and age when people are so busy and use prepackaged goods it is no wonder children are ignorant of where their food originates. I admit that there are times when I am lazy and use a packet or tin  but I try very hard to use fresh food and try to eliminate preservatives and colourings.

People who have illnesses like rheumatoid arthritis and other auto immune diseases react to certain foods and it is imperative to try and keep triggers to a minimum. If I make dishes from scratch, using fresh foods, I feel I am doing my best in reducing the risk of triggering a flare of the arthritis. I know what is in the meal and can monitor much more easily the foods that may trigger a flare.

So come on weather brighten up so we can get out in the garden and make the best use of the space we have available.

Can I? Can't I? Taking risks and chancing rejection.

The last few days have been very challenging. Rheumatoid Arthritis flares are painful, tiring and depressing. Add to that the horrid weather and I feel ready to give up. Then once the pain and tiredness start to reduce I feel different and I have started to take an interest in things again.

Today's post brought the latest issue of my Christian magazine that I subscribe to. I am happy to admit I take a religious magazine and I find it covers all the areas that I have interest in. This month gives a menu to feed a family of four for just £3.25 and advice on using the skills you have to possibly start your own business or help those in need.

When I had to give up work following my third stroke I found I was struggling with concentration, co-ordination, memory and confidence. I thought long and hard about what I could do with my life post stroke but knew I would have to work at reclaiming at least part of what I once had. I never expected to be the person I was before and that has been proven to be true, I am me but a different me. I learnt to adapt to life with a wheelchair instead of legs and being reliant on other people but I wanted to be independent and find what I had inside me. I knew I liked to write and to research so I signed up to an online journalism course. I loved it! I carried on with the course even after I moved to France and was able to put a bit of a twist to the course with the French influence. As I worked my way through the course I felt I was gaining in confidence and I was concentrating better. I had to work really hard at it but I was getting so much out of it and when my diploma arrived I was ecstatic!

I wasn't sure what to do with what I had achieved but I carried on writing bits and pieces like stories for my grandchildren. Then I got the opportunity to write for an English newspaper in France and I did that for quite a while. The first time I saw my name in print was fantastic as I had come such a long way. Then I wrote for the internet and that was very interesting as I could write about different things. But when I was diagnosed, eventually, with rheumatoid arthritis not only did a lot of things that I had noticed such as the pain, swelling, tiredness and depression, fall into place but I found I couldn't write so regularly and eventually I had to stop. This has been hard to accept as I had fought back after my stroke and now I was being stopped from doing something I really enjoyed.

Now I wonder if the treatment I am receiving has got me to a point where I can start again? My ten year old granddaughter has commissioned a story which I have started and she is insisting on reading every chapter. I have a few stories for adults in my collection but am not sure about actually doing anything with them. My daughters tell me send them off to magazines but perhaps it is the fear of rejection that stops me. I am continually having ideas and scribbling and as they say I will never know if they just sit there.

I suppose we are all afraid of rejection at various points in our lives. From making friends, to applying for jobs we baulk at putting ourselves in the position where we are 'not what we are looking for.' But if we give up at the first hurdle we will never finish the race so I have promised myself I will submit my stories to magazines and if I am rejected I will pick myself up, dust myself off and try again.

Setting goals, but does Fred listen?

I have had to have stern words with Fred as I am going through a flare but he just doesn't want to listen. I have even tried to give the flare away but no takers so far.

I have been reading forums and blogs and seen posts about setting goals and racing to finish activities.

I feel setting goals is a good idea as it spurs everyone to achieve. However, it isn't that easy when you have a chronic illness. Many years ago I was introduced to 'pacing' but I have never been able to achieve it. Of course I have learnt the hard way and caused myself distress, pain and acute fatigue; not to mention what I have done to my family, especially my husband by not practising this technique.

Realistic goals are excellent as long as you stick to those goals and not try and overachieve. It would (and has been for me) easy to feel that having achieved the set goals you can push on to do a little more and a little bit more. Setting unrealistic goals mean that you will be rushing to finish and for anyone who has chronic pain, stiffness and tiredness it is the perfect way to set you back and stop further activity for a while.

So what are realistic goals?

For me it is being able to prepare meals, go shopping, visit friends, go on outings. Not overly exciting but for me they are what I want to do while others have different goals but the technique is the same.

If I want or need to go out I need to rest up the day before. Depending on where I have been and how long I have been out I might need to rest up the day after too. To go shopping I have to have a list and plan where I am going, so we have an route we will follow. If I am out too long I get so tired I find it difficult to communicate; this is a legacy of my three strokes. I have to have help with cooking and I turn to my husband or granddaughter to assist me. My husband never complains at chopping onions, garlic and chilli peppers, although I make him wash his hands thoroughly afterwards! My granddaughter makes superb pastry but if I need to do it whilst she is at school I use my food processor; saves time and eliminates pain. I make my own bread and I am so thankful for my bread maker, pop in the ingredients, switch on and let it get on with it. I feel some kitchen aids are a waste of money but my food processor, bread maker and juicer are worth the money.

I use a chair to sit on when I have to stir sauces or ingredients at the cooker and ask my husband to get things from cupboards, the fridge, freezer and cooker. Some people will say I am lazy but just these little changes to my life mean I can achieve goals something very important to people in my position. If I tire myself but being too independent it means I collapse in pain and feeling so tired and I will have to go to bed. I then cannot eat meals with my husband and put extra pressure on him and the rest of the family. This is most unfair to them, I like to watch television with my husband but if I overdo it then we watch the same programme in separate rooms.

To make life easier for my husband I have a medical bed which has a controller to raise the bed and the head to help me sit up. This helps him so he hasn't got to manually lift me. So the goals I set means that my husband isn't too tired and in pain to help me through the day and achieve what I want to do.

Even following these techniques doesn't mean that you can do everything you would like to do. Rheumatoid arthritis can go into remission but equally it can flare out of control. People live with varying degrees of rheumatoid arthritis and this has a bearing on what they can do.

There is no need to rush through chores or activities.
Take regular breaks.
Try to sit while doing household chores like food preparation, ironing, gardening and while attending to food on the cooker.
Use aids or adaptations to help with household chores, in the car, in the bathroom and if necessary in the bedroom.
Lose weight if necessary to avoid strain on joints and hopefully improve mobility.
Make sure you take the medication prescribed and discuss your medication with your rheumatologist if you feel things are not going well.
Make sure the goals you set are realistic.
Don't be afraid to ask for help.
Don't be afraid to accept offers of help.
Rheumatoid Arthritis is an autoimmune disease and affects organs as well as joints, report anything you feel is abnormal for you.

Having written this I now have to make sure I follow my own advice!

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.

You learn something new everyday!

Now being that I am a 60+ something lady I feel I am quite with it. I blog, as you see, I have a website, I use facebook and I twitter. I use the web a lot to look up things of interest and I e-mail and text my friends. I do use a telephone too but if I need to take my time the other ways of contact are better for me.

I was on facebook looking at a forum that Fred and I belong to and a lady asked a question about problems with her throat. Did other people have similar problems? She asked. She was told this was Cricoarytenoid Joint.

This joint is situated in the back wall of the larynx, it helps open, close and tighten the vocal chords during speech and breathing.

According to what I read on the internet about one in three people with Rheumatoid arthritis suffers from Criocarytenoid arthritis. But I had never heard of it.

The symptoms include:
: Hoarseness
:Pain when swallowing
:Sensation of having something stuck in your throat
:Pain when talking or coughing
:Shortness of breath

Many people, like me, have passed the problem off, or have mentioned it to a consultant but have not been told what it could be. I have seen an ENT consultant but all that came of that was to find I had a huge infection in my sinuses that had progressed to my lungs giving me pneumonia.

At present I have another problem with a herniated cervical disc and have increased my steroids dose. If along with the disc problem the problem with my throat persists I will telephone the Rheumotologist in two weeks, as arranged, and ask him what we can do.

I cough a lot, have sleep apnea (caused he says by the RA), have difficulty in swallowing (which I have told him, especially large tablets), a constant feeling of having a blocked throat and my voice has changed.

I am not sure if this is just me, but I have to say to my consultant 'do you think it could be....?' and invariably he says, 'Yes!'

My husband says he thinks that consultants don't want to be negative all the time and say this or that can happen. I agree but, when presented with a symptom they should be honest. I am a big girl I can take it so, why do I have to surf the internet to find things out and then present them to him?

Horray for the forums and groups I belong to. We support one another, reassure one another but we also help to educate each other too. That is the joy of being able to use the modern day technology.

Staying positive.

We woke this morning to a very grey, foggy, damp, cold day.

The nurse came to do my blood test and give me my methotrexate injection. She was very cold and said the fog was quite dense. We had to go shopping and visit the pharmacy so we wrapped warmly and set off. The thermometer in the car was registering minus 1 as soon as we left home.

The local market town was freezing. I had a thick jacket, hat, boots and gloves but still felt cold. We went to get my medication and then did the shopping as quickly as possible to get home. Luckily we didn't have to wait around too long and we were on our way home. By this time my hips, back, and neck were agony.

The wood burner in the kitchen was warmly welcoming. A hot cup of coffee went a long way to warm us up on the inside. I was insistent that I help prepare lunch and dinner but the pain in my hands made things very difficult but being so stubborn I ploughed on.

After lunch we sat by a huge log fire in our lounge with a cup of tea and a good book. Where better on a horrid day? Curled up in my big armchair is was fantastic, watching the flames and feeling the warmth made me appreciate what I have.

Unfortunately the methotrexate always make me feel quite unwell but I am so stubborn I don't want to give in unless there is nothing else for it.

Methotrexate has not done me any favours. Dizziness, sore throat, itching, hair loss and problems with my lungs. I had pneumonia twice in four months. One of the side effects noted about methotrexate is that it causes mild hair loss but for me I lost all the hair on my legs, bikini line and under arms.

I also take prednisone daily. The side effects of that are also very distressing. The weight gain around the abdoment, the dowger hump, the round 'moon' face, acne (for me this has been mainly on the chest, arms, buttocks and occasionally on my face. I have developed diabetes, I have osteopenia in my left hip, high blood pressure and where I have lost hair in certain places I have an inordinate amount of hair on my face. I am lucky that I am very fair so the hair is not as noticeable as it could be but it is there.

In October I was hospitalized with a herniated cervical disc. On admission I was also found to be diabetic. After initially increasing the dose of prednisone over a month while the disc healed, my rheumotologist decided it might be prudent to lower the dose slowly over the next few months to get me off the steroid. I was happy with this arrangement but I am amazed to find that since lowering the dose I now have hairy legs! I was shaving my legs lightly every three months now if I leave it I shall be plaiting the hairs! Still no hair under the arms though, but I do believe that I am seeing less hair on my face. The dowger hump has gone and I have noticed a great change in my face which looks less moon faced. As I was put on a diabetic diet I am losing weight which is good news for the arthritis, the diabetes and the high blood pressure.

I still get pain though which perhaps is due to the lower dosage of steroid but until the blood test results come back I really don't know. My neck has been in so much pain that I have temporarily increased the steroid after talking to my rheumotologist, he has that this is for two weeks but if the pain and the side effects of the disc continue then we will have to discuss the matter.

I have enough problems with the pain Fred gives me without the cold and damp weather we are stuck with at present. Managing Fred, coping with the pain, trying to get off of medication is very stressful which plays right into the hands of the auto immune system and throws that right off kilter.

But stay positive. I am positive it hurts, I am positive I am fed up with Fred, I am positive I hate my medication, I am positive I loathe the side effects.

Herniated cervical disc flares again

Last October I was hospitalized for a month with a herniated cervical disc. I had to wear a cervical collar, take strong painkillers, not lift, not turn my head, take increased amounts of Prednisone and just rest.

My rheumatoid arthritis was diagnosed in 2008 and has spread through my body. The last places it appeared were my neck and my jaw. In 2010 I started to feel very dizzy, have pain in my neck, shoulder and top of my back and also numbness in my left hand. The dizziness became quite a problem as I started to fall and it was then my husband took me to the hospital. I had a scan and was told it was the cervical disc that was herniated to match one in my lower back. Between the two I have a great deal of pain and walking is very difficult. I use a wheelchair because of the pain but sitting is as uncomfortable as walking and at times even lying down is painful.

I have looked into the options for pain relief. I use a TENS machine which I like as it is easy to use and no medication is required, heat pads and cold pads are brilliant but only give temporary relief, strong painkillers work well but if I take the amount recommended by the Rheumotologist I get stomach problems.

People are not very helpful with their comments.
I get a bit of pain now and again.
You should do more/less exercise.
Arthritis is only for old people.
Its mind over matter, just get on with it.
Its only arthritis it can't kill you.
At least its not cancer.

So many people are not well informed and don't understand about rheumatoid arthritis and what it can do not only to your joints but other parts of the body too. It can cause dry eyes and mouth, pleurisy and heart problems. It is also recorded that people with rheumatoid arthritis have a shorter life expectancy. Due to the steroids I have also developed diabetes.

I was told if I can come off of the steroids there is the possibility the diabetes will clear up. In December I saw the rheumotologist and he was pleased with the way the disc was healing so I started to decrease the steroids. I have had pain but have stuck with it. Then a few days ago I started to feel pain in my neck again. The dizziness returned and some numbness in my hand. I rang the rheumotologist and he told me to start wearing the neck collar again, take painkillers, increase the steroids, not to lift, don't turn my head; all the things I did last time. I had hoped to be off the steroids by April. If my symptoms are not better in two weeks I have to ring him again.

In the meantime I am reliant on my husband and family again and my independence has had to take a back seat for the time being. I can only hope that my disc repairs in the next two weeks.

Thank goodness for the teapot

Today I have had need of my Teapot. I woke not feeling too good and then, due to my arthritis, I fell.

I already have problems with my hip and back so it was those that were affected. The pain has been quite horrendous and I have had to rely on my husband to help me. I have been resting all day knitting, reading, watching television and surfing the internet.

To deal with the pain I tend to use painkillers, heat or cold pads (depending on where the pain is)and I also use my TENS machine. I use it when the arthritis is in my hips, back, knee, hand, elbow and shoulder. It is easy as you can just carry on as usual while the machine pulsates and helps relieve the pain. I also try and take my mind off of the pain; which is not always easy.

I had plans today too which is annoying. I wanted to make soup, prepare some meals for a couple of days and to take my computer to the computer doctor. I am borrowing my husband's computer at the moment and it is just not like having my own.

In some ways I am glad I didn't have to go out as since last evening the weather has been terrible. All night the wind howled around the house and rain lashed the window shutters. Today the wind howled in the chimney and I could see the rain pouring down and hitting the window panes.

I have plans for tomorrow so I am hoping the pain and the weather will have improved by then

One step forward - two back

I was exhausted, in pain and feeling decidedly not well. In the night I woke unable to breathe, my right eye was numb and so was my right foot. I told my husband but he didn't know what to do and as I couldn't move alone I was left to go back to sleep. Today I have similar symptoms but as he is unwell due to driving all day I am just getting on with it.

The arthritis is very active in my neck, hips and back today. I have a funny hand which I can sort of cope with. When my husband is feeling like he is today I feel really guilty that I can't do very much to help. He is my carer so I rely on him and when he is ill we are both in trouble.

I am going to have to contact my Rheumotologist and explain what is happening with me and see what he suggests. I desperately want to come off of the Prednisone which he is aware of, but now I am on a very low dose and I am having such bad reactions I need some advice.

Fred my arthritis and I are not on good terms, he is making my life very unhappy, painful and downright frustrating. I can't do anything to satisfy him and his demands are unrelenting. At least calling him Fred means I have someone to blame!

Give it a name and you have someone to blame!

My rheumatoid arthritis is called Fred.

No, I am not mad I just feel that when I am in pain, am exhausted, brain won't work I have someone to blame. That is where Fred comes in.

Today I sat in the car for hours and Fred is now complaining. Fred needs soothing so it is the head pad, TENS machine, rest in a comfy bed, painkillers and indulgence. Fred gets quite upset when I try and exercise, walk, be independent. But do I give in to Fred? Sometimes, like now, I will rest and let the screaming joints calm down. Other days I will keep going and going and going until I am in tears. I don't have the word pacing in my vocabulary and my husband will keep on about pacing yourself, you know it is best in the long run but I want to finish what I started.

When I get to the stage I am at this evening I need help. Help to undress, help to get ready for bed, help to get into bed; I feel like a baby. My husband cooks the food and cuts mine up to help me. I am very lucky but sometimes I don't show my appreciation.

I don't like asking for help and my husband says I am my own worst enemy. I feel so guilty you see for being ill, for having problems in doing things, not pulling my weight in the house and for having to ask people to do even simple things for me.

When I say this I am told that he wouldn't do some much for me if he didn't love me like he does. He knows how to make me cry!

The worst part is when I have a flare in my rheumatoid arthritis it is preceded by a change in my temperament. The poor man can't do anything right, but he carries on exactly as before doing things for me and helping me.

That is love.