Tuesday, 17 January 2012

Pain, pain go away but don't come back another day.

In a lot of ways today has been one of the worst I have ever had. The herniated disc in my neck has been really bad which means I have pain from the top of my back right down my arm into my hand.

This means getting my husband to help me. He has been rushing around getting cold pads out of the freezer, putting a hot pad in the microwave and helping me get attached to my TENS maching. I explained where the sticky pads had to go and he was rooting around inside my nightie to stick the pads on the right places! Then it is finding the right connections, the white one on the bottom pad the red one on the top pad etc. So there he is almost strangling me while he tries to attach the snapper to the pad.

Then he says he will do the heat pad and bring some cold pads when the TENS has finished so we set the timer on the TENS and he goes to set the timer in the kitchen while the machine pulses away to, hopefully, get rid of the pain. No joy though. I have had hot pads, cold pads, TENS and painkillers but nothing has worked and I am still in pain and not able to get hold of the rheumotologist until tomorrow. I can't sleep because it so much if I lie down. It also hurts to sit down, stand up and and worst of all try to walk.

When he isn't getting pain relief he is rushing round like an idiot to pour me a drink, make tea, cook the dinner and cut mine up because even eating is difficult. As I need to test my glucose due to my diabetes he comes to help with that too. Then he sits down to watch his footie team to find the game has been postponed (no that isn't funny.)

Me I just lie here saying 'I can't ..............' I have to bang on the wall to get his attention which from my point of view isn't funny either just flaming painful.

He came in just now to ask if he could do anything. All I can say is I want to get rid of the pain and the only way that is going to happen is a doctor giving me a strong painkilling injection. When this happened last October I just got pain in my neck and a bit of shoulder pain but the numbness in my hand was the problem. Which got worse as the numbness spread up to my elbow. Now strangely the numbness I could cope with, it wasn't nice but this pain is unbelieveable.

I am wearing the neck collar that was given to me in October but it isn't doing anything to help.

A friend on facebook said perhaps I hade been typing too much, which is possible I suppose. But I cannot be sure. What I have wondered is perhaps a nerve is trapped, if so can it please extricate itself from where it has gotten itself trapped, thank you.

This is a whingeing blog today, I know and am sorry but sometimes it is essential to get these things off your chest.

Monday, 16 January 2012

Sitting comfortably?

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, 15 January 2012

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.

Saturday, 14 January 2012

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.

Friday, 13 January 2012

Crying isn't a sign of weakness.

I cry sometimes out of anger, frustration, guilt and sometimes just feeling sorry for myself.

Tears are healing at times and I feel people should cry to vent the feelings inside. If we let feelings build up they have to be released in someway or another. If it is not through tears then it could appear through physical activity such as smashing things, hitting, throwing.

I often feel upset when I am unable to do things I feel I should be able to do. Pain is the major factor in stopping activity. My husband has to do such a lot for me and much of that is quite intimate. He washes me, dresses me and takes me to the toilet. Toileting is the worst part for me as it is very much a personal action and having someone take you, prepare you for the toilet and then having to help you afterward is enough to reduce someone to tears. He does the shopping, cooking and also cuts up my food, sometimes he has to feed me as well.

For many years I felt in control. Working, shopping, cooking, looking after the family, swimming, aqua aerobics, running a Girl Guide unit, adult education classes. All requiring some level of activity both mental and physical. I was able to drive, in fact I needed to drive for my job. Over night it all stopped and my husband became my carer. People with think that after 10 years I would have become used to accepting the help but no. I find it difficult to accept the help and impossible to ask for help. If I need something I want to get it, go and buy it, be independent. Sometimes I think I have accepted the situation then something happens to change everything.

I burst into tears so often that upsets me! But, I have thought long and hard about crying and am of the opinion that crying isn't a sign of weakness but instead a sign that you are strong enough to allow people to see your emotions.

Allowing emotions to show allows people to see that you have feelings and that you can be affected by what you have to cope with.

Being vulnerable is difficult and people don't understand how living day to day with pain affects your life unless they are in the same position. I need to vent my feelings because if I try to keep a stiff upper lip I can feel the stress building up.

I don't think it is a matter of crying all the time but if you are able to cry now and again it helps to ease the pain inside as well as the pain in your joints. I say this because if I let it build up inside me my joints start to hurt, crying seems to ease all pain.

So if you hurt inside or out shed a tear or two and show you are human, you can be hurt and you are above all strong enough to show the world.

Thursday, 12 January 2012

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.

Wednesday, 11 January 2012

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.

Monday, 9 January 2012

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

Sunday, 8 January 2012

Teapot designs

I find teapots most reassuring. There is nothing more satisfying in winter than sitting by a fire with a hot cup of tea.

When I started thinking about the New Year I didn't want to make new year resolutions. I find that they are all broken by 1st February so I thought what can I do practically to change my life. So the first thing I had to decide was what do I like to do?

I made a list: photography, writing stories, writing poetry, writing articles about travel and tourism for disabled people, card making (where I can use my photography too), knitting and making fascinators.

Being in a wheelchair does have it's disadvantages. There are places that I can't get to but on the whole have wheelchair will travel. It doesn't stop me from doing things that I like though; perhaps just occasionally when the rheumatoid arthritis affects my hands.

Living in the middle of a national park has it's advantages in that I can visit beautiful surroundings all year round which makes photography a complete joy. I resource pictures and materials to make cards, use personal experiences to write stories, and poetry, find writing articles about travel and tourism for disabled people is easier when you can say been there done that.

I love to knit. However, if your hands feel like boxing gloves and you can't bend your fingers it makes knitting a bit difficult so I tend to do little and often.

My daughter married 28th December and she had ideas on what she wanted. Her daughter was to be bridesmaid so I made fascinators for head dresses. Both were delighted with them.

I wouldn't say I am perfect at any of my interests but I can have a darn good try!

Rheumatoid arthritis just isn't funny

Perhaps, like me, you associate rheumatoid arthritis, or any type of rheumatics come to that, with the elderly then you are very much mistaken.

I remember my grandmother and my father both having rheumatism and now I regret just passing it off as something that will eventually come to everyone.

I remember years ago talking to my doctor about the severe pains I had in my thumbs and especially around the base of my thumbs, also in my knees but was told I was too young for rheumatism.

I had three strokes and each one left me more disabled mentally and physically. After the last one in 2000 I had hoped to make some sort of recovery but by early 2001 I was still finding things difficult and ended up in hospital again; twice. I was totally exhausted, in pain and really struggling with everyday things. Luckily I have a husband who cares for me despite being ill himself. I found dealing with money and form filling especially difficult and came to rely on my husband more and more. During the second hospital stay I was referred to a psychiatrist would told me I had ME or CFS (Chronic Fatigue Syndrome.)

In 2002 we sold our large family home to move in with our younger daughter and her family. She and her husband ran a business and had a baby girl. We were to help with childcare and a little toward the business. We bought an old house as a buy to let investment with a sitting tenant and also bought a second home in France. We spent blocks of time in France and I found that my health was a little improved in the tranquility of the area. Our house was on one floor and had amazing views over farmland, also we had wonderful neighbours. In 2003 our daughter told us she was pregnant again which we were all happy about then the news came about that they had lost the business and they moved temporarily in with her parents in law. In the October she gave birth to a boy and because they had this tiny baby and a toddler they were moved to half way accomodation which was horrible. At least they had a bathroom and kitchen of their own but lived, slept and ate in one room with the baby sleeping in his pram.

So, we were homeless too. We moved in with our elder daughter and her partner but resolved to spend most time in France. They were planning to marry in April 2004 and we were involved in the preparations for that. We went to France for Christmas 2003 and we talked over our situation. What could we do? Then the answer hit us - move to France permenantly. We returned to the UK in January and put the wheels in motion. We obtained the necessary paperwork, made loads of phone calls to assertain if we could continue to receive our benefits and keep medical appointments. One appointment was very important to me, it was regarding the intense pain I have in my back. I saw a lady consultant who told me I would have to learn to live with the pain.

In May 2004 we moved to France permenantly, our new son in law drove a van with most of our possessions; to make sure we went he said! Our people carrier was also packed to the gunnels. The mayor and commune were really happy we had moved permenantly and made us welcome all over again.

That summer I ended up in hospital again and then spent a month in a rehabilitation centre. I was convinced I had suffered a flare of CFS which the doctors and physiotherapists didn't recognise as being an illness. I was happy to get home and start recovering on my own. I did start to improve and I was able to do more and more, little by little. Then in January 2006 my husband was taken seriously ill. We knew we needed to be nearer commerce than the 35 minute drive we had then. We moved to a village on the outskirts of the town and settled into a fairly happy routine. We kept the same GP and pharmacist who became a good friend.

Febuary 2007 brought news I suppose I had been waiting for for sometime, our younger daughter and her husband were to split up. Her husband told her to go and live with us in France and take the children. As we were going back to the UK for her sister's master's degree graduation in the April we said we would bring her and the children back with us on our return.

Soon after arriving our daughter found a job working on canal hotel boats which meant she was away from home a fair bit leaving us with the children. It wasn't easy as both the children and their mum had no knowledge of French and were all thrown in at the deep end. The children were 5 and 3 when they came to France. A few months after starting work our daughter met a Frenchman to whom she is now engaged, this bolstered her spirits and the children took to him straight away.

I fell and broke my shoulder in October 2007 and was out of action for a few weeks but also I was finding everyday things more and more difficult as the task of looking after two children started to have an impact. The following summer we decided to take a holiday. It was lovely just doing what we wanted to do. However, I started getting severe pain in my hands. I saw the GP on my return home and she referred me to a rheumotologist who told me before tests I had rheumatoid arthritis. The tests only confirmed it. I started on medication straight away. I told him about the problems I had had years before and the fact I was diagnosed with CFS. He said from the x-rays he could tell I had had RA for at least 20 years and I could never be too young as children get juvenile rheumatoid arthritis. Also the back problem was nearly 30 years old which is correct as I had fallen down stairs about 30 years previously hitting each stair with my lower back, causing the pain I was told I would have to learn to live with.

Since 2008 the arthritis has spread and I also have osteo arthritis and now Osteopenia called a precurser to osteoporosis. I have this in my hips. I am affected from my feet to my jaw. Just before Christmas 2010 I had a really bad chest infection and following that I had flares of the RA every two weeks. In March we went to the UK for a month and I spent a week in hospital with pneumonia, since then I have suffered two weekly flares of the RA again. I am desperately trying to come off of the medication I am on as I am having such bad reactions to them and hoping my rheumotologist will agree.

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.