August Blues!

This is my first post for a very long time. I have been lucky for quite a while. I have been relatively OK with the occasional flare up. These have been easy to manage, usually settling down very quickly when I take Naproxen. However, recently my luck seems to have run out.!

For the past three weeks the pain in my left leg and hip has been getting steadily worse. I often wake up several times during the night and the only way to ease the pain is to walk around for a while. Then, of course I go back into bed and it usually takes me quite a while to get to sleep again (often just before the alarm clock goes off). This has been compounded with a really bad bout of Achilles tendinitis.

I haven't really told anyone, including my Other Half, quite how awful it is. Although, he has noticed how bad my walking has been recently. At times this week I have felt like crying. I am not sure what to do about it - I may try to make an appointment with my GP. That will probably mean a referral to a  Rheumatologist at Poole Hospital and stronger drugs. Not ideal!!

I am really, really worried about how I will cope at work with this level of pain. September to November are the busiest months of my working year. I spend most of my days either on my feet teaching or dashing between campuses. I will be very honest with you - I am facing the new academic year with a great deal of trepidation.

Sorry to end on that negative note. Hopefully this bad flare up will end very soon!

Hello again

I was shocked to see how long it is since I posted here. Part of the reason is that I have been feeling so well. I suppose I was almost afraid to jinx it by writing about it. Stupid huh?

I am still in a certain amount of pain every day. I don't suppose that will change now. But I have been able to do so much recently and I want to make the most of it. During a recent trip to Bath I was able to walk further than I thought possible. It still hurt at times but the pain was manageable. I did however have to pace myself and take regular breaks to sit down. On several days the trudge back to the hotel in the evening was a bit grim. Another thing that I will have to accept is that my energy levels will never be back to where they were four years ago.

OH is infinitely patient with me as always. He is very energetic and it must be frustrating walking with me sometimes as I just can't keep up with him. He now moderates his pace and will offer me his hand or arm when I am really struggling.

I continue to take ginger and it seems to be helping me. I have a cup of ginger tea every morning with my breakfast and I have a very small piece of crystalised ginger in the evening. It might be the placebo effect but to be frank I really don't care if I feel better!

Being realistic I know that I will have another flare up at some point, but I don't want to dwell on that. So that is how I am going to leave it for now, enjoying the sudden spell of warm weather, feeling better than I have for several years and hopeful for the future.

Self belief

I haven't posted for quite a long time. That is due to a number of things. Life has been very busy and it has taken all my energy just to get through the day. I honestly haven't felt like writing.

I have had a couple of flair ups since Christmas and I am in the middle of one at the moment. I had arranged to go to the Vintage Fair in Boscombe on Saturday with two friends, At 3 am on Saturday morning I was woken by a pain in my hip and knee. The pain continued to get worse as the day progressed and by 3 pm it was agonising and very difficult for me to walk. With regret I left my friends to carry on browsing the vintage shops and had to return home. 6 months ago I would have been very upset and it would have completely ruined my day. Now, I have come to accept that this will sometimes happen. I try to take it in my stride and get as much enjoyment out of things as I can. It did cross my mind to call my friends and cancel but I decided to go ahead. My only worry is that I was being selfish and may have spoilt things for them.

Having more or less come to terms with the physical symptoms of my illness I am now struggling with some of the psychological aspects. The major one at the moment is my appearance and self confidence. I am stuck in a rut at the moment and I am resolved to get myself out of it. I rarely wear skirts anymore as I am self conscious. Sometimes my left ankle and left knee swell up to twice their normal size. OH tells me I should wear skirts and dresses anyway and not to worry about what other people think. Easier said than done!

The combination of age related changes and those brought about by my illness have made shopping for clothes a thoroughly depressing business. My two friends have recently started sewing. I have sewn since I was a small child. My Mother is a very talented dressmaker. When I was in my 20s and 30s I used to make a lot of clothes for myself. But I haven't done much dressmaking for the last 15 years or so. Now, watching my friends enjoyment of dressmaking has encouraged me to start again. I am hoping that will enable me to get out of my current rut. I will record my progress in my other blog 'A beader's life'.

January

I normally really hate the period immediately after Christmas. Spring always seems very far away and the weather is usually foul. Well, this year is an exception. I was lucky enough to have two weeks off over Christmas and I returned to work today feeling refreshed and ready for most things. However, the weather was indeed vile. We had 80 mile an hour winds along the south coast of England this morning coupled with heavy rain. On my journey to work I was forced to cling onto railings and bus stops in an attempt to remain on my feet on several occasions. It was exhilirating and scary at the same time. One of the joys of living by the sea!

On the arthritis front things have been mixed over Christmas. I have had good days and quite a few bad ones. My back has been very painful. The pain is with me constantly at the moment in varying degrees. It frequently wakes me in the middle of the night. This is different to a normal flare up. They usually respond to anti-inflamatories quite quickly. My back doesn't seem to be responding well to the Naproxen at the moment, which is a bit worrying. If it continues I will have to make an appoinment with my GP. One thing that is stopping me is that I will probably get referred back to my Rheumatologist. That will mean more tests, probably including an MRI scan. I dread scans as they completely terrify me. I suffer from claustrophobia and just the thought of being in that narrow metal tube makes me break out in a cold sweat. I made a complete idiot of myself during my last one by having a panic attack. If I have to have another scan then I will ask my GP to prescibe something to clam me down.

For the next few days I will try some other natural anti-inflamatories such as ginger. I will let you know how things prgress.

Winter blues

After quite a long period of not feeling too bad I am experiencing an arthritis flair up. I think it was inevitable. Life has not been too much fun recently and the stress has finally taken its toll. As I mentioned in my last post work has been incredibly stressful for the last 6 weeks. I have been working in the evenings and at weekends just to keep on top of things.

In many ways my new job is good for me. It is stretching me and forcing me to learn new skills. I have more staff to manage and almost twice the workload that I had two months ago but for the same pay. That galls me a little bit. I am not a materialsitic person and lets face it, I wouldn't be doing this job if I was planning on getting rich. Also some people may say that I should count myself lucky that I have a job at all. It still annoys me though!

On the health front I think that I am making peace with my illness. That is not to say that I don't have days when I feel down and frustrated. But I can now manage my condition more effectively. I recognise the signs of a flare up and know what to do to minimize its effects.

Despite what my rheumatologist said to me I firmly believe that cold damp weather exacerbates my condition.The last few days have been just that! This whole experience has made me very cynical about doctors and consultants in particular. Don't get me wrong I have met some very good and supportive ones but also some very arrogant ones too. Some have been very dismissive of my condition. I suppose it must be very difficult for a doctor who is very fit and active, who regularly runs marathons for example, to understand how difficult it can be living with chronic pain.

Sorry - this has turned into a bit of a rant. But as, according to Statcounter, no one reads this blog, it probably doesn't matter. The reason for me starting it was to help me express my feelings about my illness. If by chance someone stumbles on it and gets some help/comfort from reading it then all well and good.

Holding pattern

I was horrified when I saw how long it was since I last posted, So much has happened since then. Work is very stressful at the moment and I think it is starting to affect my health. I don't want to go into details but I recently applied for a promotion and went through an interview and selection process. I didn't get the job and the feedback from one of the interview panel left me bruised, battered and totally demoralised. I now doubt my ability to do the simplest things. Just to top that I have now been given a totally different job and I feel that I am out of my depth.

After a fairly long period of feeling OK I am heading for an arthritis flair up. I am going to put both my blogs on hold for a week or two in the hope that I will start feeling better.

The calm before the storm

I have been going through quite a good patch recently. Just a little hip and knee pain. My ankle was feeling OK too until this afternoon when someone kicked it by accident .(Why is it whenever you have a sore foot, knee, arm etc. someone always knocks you in the place that hurts the most?).

Life has been a bit of an emotional rollercoaster recently. The University term is about to start and we are deep in the process of reorganisation at work. It feels chaotic and out of control and I have had to resort to taking work home. I usually try to switch off from work completely when I get home. But an important deadline for a project is looming and there simply are not enough hours in the working day.

Its great that I am feeling so well at the moment, but I worry that all of this will catch up with me and that I am heading for an arthritis flare up. Uncertainty is one of the worst aspects of this disease. It is unpredictable. You can go for months, even years without a major flare up and then you can have several in quick sucession. This was the aspect of the disease which worried me the most when it was first diagnosed. For a while I was scared to plan too far ahead in case I was not well enough to do whatever it was. Now I plan for things, but try to have continguency plans in place. My employer has been very supportive and I know that I have the option of working at home if I feel very unwell. I am also very fortunate to be part of a close knit and very supportive team at work. We are all going through a lot of change so it has been great to laugh (and sometimes cry) about it together. That has not only helped me to cope with my illness but also the recent upheavals.

Stress is my main enemy, as it is in most auto-immune illnesses. Recently my stress levels have been off the scale! However for now I will simply enjoy the fact that I am virtually pain free and try not to dwell on what the future might hold.