Strange days indeed

This last week has been a bit strange and unsettling. Life has been a bit stressful recently. Things have been very hectic at work. Plus there is a chance of promotion coming up very soon. I think that the new job would be good for me, but I do worry that I might be taking on too much. I realise that I am lucky to be able to work at all. However it does seem to take all of my energy. I don't have the stamina that I had 5 years ago. Probably a combination of getting older and the effects of my arthritis. Stress is known to aggravate auto-immune diseases like arthritis and that is probably why I have had such a bad week.

It is odd though, because people have commented that I am looking well at the moment, but in reality I am not feeling too great. At the weekend my whole leg ached from hip to ankle. It also felt heavy and I was very conscious that I was not walking well. Then there is the subject of 'buttock pain'. It is another typical symptom of my illness. Pain at the top of the thigh just under the buttock, very similar to sciatica. A friend once commented that my flare ups must be 'a pain in the ass'. Little did she know how true that was. It is at its worst during long journeys or if I have to sit for extended periods of time. I usually explain my restless fidgeting as back or hip pain, as it can be difficult to tell virtual strangers that my bum is hurting and that is why I can't sit still !

Another thing which didn't help this week was my dentist's appointment. I was expecting to have my wisdom tooth extracted today. However I have been told that the tooth is going to be a bit more difficult to extract than first thought. Therefore I will have to be sedated before it can be removed. I have mixed feelings about this. On the one hand I had psyched myself up for having it done today and I am disappointed that it has not been sorted out. However, on the other hand, I am really glad that my dentist was honest with me. She sat and talked to me for quite a while this afternoon before deciding not to extract my wisdom tooth there and then. I was really impressed that she wanted to do what was best for me rather than what was more convenient (or lucrative) for her. I will now have to wait for an appointment to attend the dental clinic.

Finally on a more positive note I have only had a swollen ankle once in the last seven days and my knee has not been swollen at all. I still think that this because I am eating crystallised ginger and drinking ginger tea every morning. I have absolutely no concrete proof of this but it is helping me to feel better and that is all that matters.

Let me see that 'Happy Face'

One of my favourite films is 'Strictly Ballroom'. It is not a great cinematic work of art by any means but it is fun, irreverent and always makes me smile. One of the main characters gets through life by putting on her 'Happy Face'. She plasters on a huge fake smile, wipes away her tears and carries on. That is how I feel a lot of the time. Everyone expects me to be brave and carry on as normal even if I am feeling awful. They are sympathetic, but don't really want to hear about my problems. After all they each have problems of their own. So most of the time I pretend that everything is OK even though deep down it is not.

The one person who can always tell when I am not feeling great is my OH. But then, we have known each other for a very long time. One of the reasons that I started going to counselling was because I realised the effect that my problems were having on him. Three months ago I decided that I had to make some changes in my life, not just for myself but for his sake too. His life had changed dramatically too, virtually overnight. Sometimes I tend to forget that.

So, I am trying to enjoy life as much as I can. The counselling has helped. I have finished it for now, but I know that I can go back at any time if I need to. I have also been reading a really interesting book, 'CBT for chronic illness and palliative care' by Nigel Sage, Michelle Snowden, Elizabeth Charlton and Andrea Edeleanu. It is written by Consultant Clinical Psychologists and Chartered Clinical Psychologists who work with a range of patients in NHS hospitals, who suffer from chronic illnesses. Its sub-title is 'a workbook and toolkit'. It is primarily aimed at practitioners but also has a lot to offer patients. One really good section is a list of coping strategies.

I was introduced to cognitive behavioural therapy (CBT) a few years ago. I was sent on a CBT course by my GP to help treat a mild case of depression. It really helped. If you have not come across it, the idea is that CBT can help to change the way in which you think about a problem. By changing the way that you think you can devise strategies to help you cope better with whatever causes you distress. I am lucky in that I work with Chartered Psychologists and have access to wide range of books on the subject. If you want to find out more about CBT then you should be able to find lots of information on the Internet and at your local library.

I am really going to try to have a more positive attitude to life. But of course I would not be able to get through the day without my family and friends, in particular my OH. I am very lucky to have them in my life.

Feeling better

The last few days have been interesting. For the last two weeks my left ankle has been painful again and constantly swollen. I was on the verge of making a Drs appointment when something strange happened.

My OH made me a cup of ginger herbal tea as usual on Sunday morning. Four or five years ago I rather reluctantly gave up ordinary tea and coffee as it was giving me bad headaches and had become my main migraine trigger. Ever since then my morning ritual has been drinking a cup of Twinings Lemon and Ginger tea. However this time he added some slices of fresh ginger just for a change. He had also bought me some crystalised ginger. He spotted it when shopping in our local health food shop and bought some knowing how much I love it. So, for the past few days I have been eating a small piece of crystallised ginger with my morning tea. Within a few hours on Sunday the swelling on my ankle went down completely and although not totally pain free I was able to put my full weight on it. Ever since then my ankle has been a normal size.

It may be a coincidence but I have started to wonder if the ginger is making a difference. A while ago I read an article about a clinical trial which took place in Miami to assess the effectiveness of ginger as an anti-inflamatory in patients with osteoarthritis. If you are interested you can read about it here. The results of the trial were not totally conclusive and there is still much debate amongst doctors about its benefits. At the time I remember being interested but then promptly forgot about it. I did not know that I had arthritis so I though no more about it. That is until a few days ago when I talking to my OH about the ginger tea.

I am not going to go mad and start eating lots of ginger. Like many herbs and spices it can be dangerous in excess. And of course I would never take a supplement without consulting my GP first. However I will carry on taking small amounts. Apparently fresh and candied ginger root contain higher concentrations of the substance which acts as an ant-inflammatory than the powdered form. That might explain why adding fresh ginger to my tea and eating crystalised ginger seems to have helped. The tea bags contain powdered ginger. For now, as I love ginger any way I will carry on eating and drinking it. After it can't hurt and hopefully it might help.

One thing that I have learnt over the last 12 months is that it is worth trying anything which will make me feel better. Like most chronic illnesses, the experience of arthritis is slightly different for everyone. If ginger can help me, whether it is the placebo effect or not, I am not going to ignore it.

Sleepless in Bournemouth

I am feeling a little bleary eyed and befuddled this morning as I have had yet another disturbed night. For three nights in a row I have been woken by pain in my back and across my ribs on my left hand side. My restless night was not helped by the fact that one of my neighbours' car alarms went off three times at 4:45, 5:30 and 6:00 am !

At the moment I am weighing up whether it is worth going to my Doctor about the pain. The agreement that I reached with my GP is that if I experience significant pain I try taking anti-inflammatories for a week. If, after that week, I am still in a great deal of pain then I go back to her. I will have a blood test to assess my ESR. She will then arrange for me to see a Rheumatologist. Because my arthritis is classified as mild I do not get regular Rhematology appointments every 6 months. Although I have a supportive GP I do sometimes feel like I have been left to cope with this by myself. It has been left to me to research my condition try to find a way to muddle through.

Whilst I was going through the various tests and consultations which lead up to my diagnosis I was told by a junior doctor that my flair ups would be a 'nuisance'. That really stuck in my mind, Breaking a fingernail is a nuisance. Finding it difficult to walk because my ankle has swollen to twice its normal size, or being unable to sleep because it hurts to lie on my left side is not what I would describe as a nuisance ! I know that she was only trying to make me feel better but instead she made me angry.

One reason why I am reluctant to go back to the Rheumatologist is that I am afraid that he will put me on more powerful medication. At the moment I just take anti-inflammatories when I need them. They have some pretty unpleasant side effects including nausea, stomach cramps, sometimes diarrhea and make me feel really 'spaced out'. I know it sounds like a contradiction when I have just been complaining that I am in pain but most of the stronger arthritis drugs carry big risks such as liver damage and stomach ulcers.

I am on leave this week so I will see how I feel by the end of it. My OH is on leave too so hopefully we can do some things together to take my mind off how I feel. I am conscious that this is just as hard on him as it is on me. I will explore that in a future post. For now I will try to get on with my Sunday, have a shower and some breakfast and see if that makes me feel any better.

In the beginning

Nearly twelve months ago I was diagnosed with seronegative inflammatory arthropy aka seronegative arthritis. This diagnosis marked the end of years of going to my GP with lower back and hip pain. Because I was otherwise fit and healthy these aches and pains were dismissed as trapped nerves and strained muscles.

At the time I did not have a very sympathetic GP and I suspect that I was written off as a neurotic time waster. One particular consultation comes to mind. I had been suffering from pain and stiffness in my left hip for several weeks and so I made an appointment. After a cursory examination I was told 'you did not seem in any great discomfort when I was examining you therefore there is nothing wrong with you.' He then got up from his chair and opened the door for me to leave. Mortified I left without protest. Once outside the health centre I sat down on a nearby bench and tried to process what had just happened. I did not realise that tears were running down my face until I became aware of the curious looks from passers by. I pulled myself together and limped off back to work, stopping on the way to buy yet more painkillers.

After that I didn't make any more appointments about my recurring bouts of back pain. Instead I carried on taking over the counter painkillers, soothing the pain with heat and ice packs and tried to carry on as normal. Time passed and I relocated to Bournemouth.

One day, 18 months ago I got out of bed one morning to discover that I could barely put any weight on my left foot without excruciating pain in my Achilles tendon and the sole of my foot. Luckily I was on leave from work and I hobbled around for a few days and it improved, but did not go away completely. A few weeks later the pain in my Achilles tendon flared up again. In desperation I made an appointment with my new GP. Sitting in the waiting room I braced myself for the usual dismissal. However it never came. My GP patiently and sympathetically listened to my list of ailments, including the lower back pain which had reared its ugly head again. She then examined me and asked me a range of questions about my general health and family history. She was particularly interested in the fact that my father had suffered from ankylosing spondilitis, a form of arthritis that affects the spine. Finally she decided to refer me to a Rheumatologist.

Once at the hospital I had a battery of tests including an MRI scan of my hips and lower back. It turned out that I have inherited the HLA-B27 gene which is associated with ankylosing spondilitis but because I don't have the rheumatoid factor in my blood the diagnosis is seronegative arthritis.

When I got the diagnosis I felt a range of emotions, relief that I finally knew what was wrong with me and that at last someone had listened to me, but also worry about what the future would hold. My erythrocyte sedimentation rate (ESR), an indicator of inflammation in the body, was high at the time. It was high enough to cause concern. Apparently the normal rate for a woman of my age would be under 20, mine was 85! An ultrasound of my left ankle showed that there was significant inflammation at the point where my Achilles tendon attaches itself to the bone. Apparently this is a classic symptom of seronegative arthritis. I had a course of anti-inflammatories and physiotherapy and my ESR started to fall.

After struggling with my diagnosis for a couple of months I decided that I needed some help coming to terms with it. So, I started seeing a counsellor. My family and friends were just too close to the problem. It really helped to talk to someone who was not involved in the situation. At my first counselling session it became apparent that I had not come to terms with my diagnosis at all. In fact I was so scared of what the future would hold that I was afraid to make plans or commit myself to anything in case I was not well enough when the time came.

All forms of arthritis are cyclical in nature. Flare ups are usually followed by a period of remission. The problem is that no-one can predict when the flare ups will occur. Remissions can last for weeks, months and even years. I have had three flare ups in the last 12 months. When I am in the middle of a flare up simple things like getting out of bed and walking short distances are agonising.

I am one of the lucky ones. The lack of rheumatoid factor means that my arthritis is considered mild and less likely to cause long term joint damage. I was told by my Rheumatologist that it was highly unlikely that I would need joint replacement surgery but it was probable that I would have some mobility 'issues' as I got older.

My counsellor has told me that I should treat this whole episode in the same way as I would deal with a bereavement. When he said that a few thing fell into place. I sadly lost my Father at a relatively young age and suddenly I recognised some of the emotions that I was going through. Disbelief, anger and acceptance.

I was angry for a long time. Angry that my former GP had not picked up on my symptoms. Early on I had told him of my Father's illness, it is well known that there is often a hereditary factor in arthritis. Anger at myself for not being more assertive, demanding that I got a second opinion and possibly asking to be transferred to another GP. I think that I have now got to the 'acceptance' phase.

I have also been working with my counsellor to change my attitude to my illness. I am trying very hard not to let the arthritis stop me from doing things. One of the strategies is to keep a diary or blog to record how I am feeling. In the beginning, when I first received my diagnosis I found it quite difficult to find any information on seronegative arthritis. Even my physiotherapist looked blankly at me when I told her what was wrong with me. Hopefully writing this blog will not only help me but also others who have been given the same diagnosis. It is hard going at times but I feel that I am making progress. Only time will tell if this is really the case.