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.

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!

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.

2012 has not started well - understatement!

After a pretty rough 2011 I had hoped 2012 would be better; how stupid could I have been?

After suffering pain in my neck area again I suddenly found it was spreading down through my left shoulder to my elbow, wrist, hand and fingers. Then I started to go numb from my fingers up.

After a particularly difficult day my husband was helping me get ready for bed and the pain was so intense I almost passed out. He got me in the car and took me to hospital. I had a scan then was put on a drip with morphine, steroids and anti inflamtories. A doctor came to see me and said I had a trapped nerve in my neck which was the problem and I need to see a neuro-surgeon.

I was transferred to a hospital nearer home the next day and for ten days was treated with morphine, anti-inflamatories, fitted with a neck collar and had my arm immobilised with straps. I came home with the collar and immobiliser plus morphine and anti-inflamatory drugs.

I saw my rheumotologist a couple of days ago and he examined me then referred me to a neuro-surgeon. He explained that, although it isn't his field, the operation could help the pain from my shoulder to fingers and the numbness but I would still experience pain in my neck. He also said the operation was risky because of where the problem lies. I understand that I need to think about the operation as any operation is intrusive and has it's risks. I have used a wheelchair for around 11years now and am used to this but I do have functioning arms and hands. I can walk albeit slowly and painfully. Having said that I would like to be better than I am now but if I had to wait a very long time before an operation it would be dreadful as I don't want to become reliant on morphine or a neck collar. I am somewhat confused and worried about things.

I have an appointment with a neuro-surgeon 14th February which is quick. The ball has started to roll and I hope they can help me as even typing this is painful and the morphine makes it hard to concentrate and think.

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.

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!