Days To Remember

There are certain days in your life that are worth remembering. I remember my first ever band call for a panto. I remember doing my first West End press night and nearly hitting Will Young with my phone as I dropped it through nerves. Friday 11th February is one of the days that will be ingrained on my memory forever. The start and end of an era.

I guess a career change isn't particularly unusual, but to attempt one based on no relevant experience and no relevant qualifications in this economic climate is probably nothing short of madness. Fair enough, I had very good reasons to be looking for a real job for the first time in my life. The psoriatic arthritis was making my position as a freelance musician completely untenable. All the same, the prospects for somebody with my employment history getting a job in another field were slim. It was hard enough getting a job as a musician.

That Friday I attended an aptitude test. It was for the only job that I had really been drawn to as I typed cover letter after cover letter. It was also the only job to come back with a positive response, and 1 of only 3 to respond at all. Apparently I did well in the tests and was asked for an interview the following week and finally offered the job yesterday.

What really made the day momentous though? Well straight after the aptitude test I left to do two shows at the Shaw Theatre in Euston. These shows were my last engagements as a professional musician. I was on this show that I confirmed to myself that it was time to move on. I wasn't expecting the move to be quite that instant.

In fact, the day serves to remind me how lucky I've been in life. Almost every job that I've really wanted has been offered to me. Just when I need it most I get the job that I wanted from my first ever job interview against people that I'm sure had better CVs for the role. I'm definitely not a religious man, never will be, but sometimes I do wonder, when things really go this well, if somebody is looking out for me.

More hand pictures

Today I'm feeling incredibly stiff. It was a struggle walking upstairs for a while and this knot in my back just won't go away. The steroids have definitely given up on me now, and far too quickly with 4 weeks to go before I see the rheumatologist.

When I'm feeling this stiff it's nice to remind myself how much progress I have made. Whilst new things keep popping up I'm confident that with the correct treatment they can be helped.

My hand at its worst

This picture shows how little I could bend my middle finger at it's worst. I could not use it to grip anything at all. In fact it put me back to pre-beginner guitar playing. Open position chords were perhaps the hardest thing to do, and not managing them was what made me finally concede that I had to stop playing.

I'm almost certain now that I am going to end up on methotrexate it's just a matter of when. I can't get it privately as it's ridiculously expensive. I just hope Dr Kirkham won't  have to rerun a barrage of tests that have already been done. I have all the evidence but I suspect the NHS won't care.

Yay! Guys Hospital Appointment date

I've finally got my appointment date through. I'm seeing Dr. B Kirkham's team at Guy's Hospital on March 21st. I would have known this yesterday had I realised that there was post waiting for me. It was quite nice it  happening today though as it helped to set me at ease before my job interview.

I guess a job interview with me at the moment is slightly unusual. The first thing that I have to do is explain my condition. It essentially explains my entire reason for seeking a career change. There is the danger that it is off putting so the explanation comes with reassurances that it really only affects my guitar playing. Anyway, I'm really hopeful after the interview. I should find out by the end of next week. As the MD said, last Friday could very well have been the end of one period of my life and the start of another, a quite beautiful transition.

5 weeks or 5 days

The original prognosis with the steroid injection that I was given was that I could expect to be inflammation free for about 5 weeks. This was great news and should have kept me happy until I could get to see the NHS rheumatologist. Now 10 days later I can definitely feel inflammation coming back. Today it's a stiff back and a sore knee with a little bit of shoulder pain as well. It's quite deflating when reality is so far from what expectations you were given. It's back on the pills and back to grinning and bearing it.

Pain in my knee

Today has definitely been the day where I've decided things aren't quite as rosy as I had been making out to myself. My right knee has been causing me spontaneous pain throughout the day. I don't think I've done anything to damage it; my knee has just decided to be angry.

I've also been playing with niece a lot today. She's four years old and playing with her generally means a lot of lifting her up and throwing her round. Honestly she enjoys it, no need for social services. The problem is it keeps reminding me that there is something wrong with my index finger. If I lift her the wrong way the finger hurts, not excruciatingly but there definitely is something going on. I also completely ran out of energy at about 4pm, a pattern that I hope doesn't continue.

My first job hunt

Now my career as a musician is over, maybe for good, it's time for me to start looking for a job. I've never really had to do it before. Every job that I had as a musician came through word of mouth. Even with the Mary Poppins tour, where nearly every other member of the band had an interview, I was let in on the word of the Musical Supervisor Steve Brooker.

At the moment I'm really applying for a bit of anything. I know I definitely don't want to do sales or recruitment but beyond that pretty much anything is open. Marketing seems to be an area that I keep being drawn to - largely because it doesn't necessarily require previous experience.

I had an aptitude test for a company involved in online marketing yesterday. It genuinely felt a bit like being back at school doing exams again, except this time I was completely unprepared. The test was very specific for that company and I think I acquitted myself as best I could but I'm really not expecting anything from my first experience of the real world of work. It's a shame that they're the first people that I've got anywhere with. I think I would probably quite enjoy doing the job and working for that company but my lack of interview experience as much as anything else will probably be a big hinderence.

How things are.

Just to give you some perspective of how bad my fingers got I've taken a picture of how they look today. I have a nice healthy dose of steroids in my system keeping the inflammation at bay right now. This is probably as good a condition as my fingers will ever be again.

I have noticed in the past day or so that the steroids haven't been quite as effective as I hoped they would be. They've certainly cleared a lot of inflammation and I an currently clear of enthesitis (inflammation of the where the tendon meets the bone). This had been really attacking my hips and shoulders and severely reducing my mobility. Now I can sprint for a bus or cough and not have to worry about pain. Unfortunately, just about the only site where pain has remained in any fashion is in my hands.

There is a sore point still in my right hand palm, not really an issue day to day but it's still there. On my left hand the two most recent points of pain have certainly reduced a lot but there is still signs of the arthritis. The swelling might not be there but they feel funny - tender is probably the wrong word but just weird. I think everything is just confirmation that I'm doing the right thing changing career.

How things were.

At the moment my hands are feeling pretty good, although not without issue. There's another post coming on that soon I suspect. I think it is quite useful to look back at what state my hands had reached. This is the worst that my right hand got, my left hand having been worse before. This was actually the day that I had the steroids injected into the tendon sheath, hence the round plaster. The finger is discoloured and very swollen. In fact, the circumference (based on the state my left hand got into) is probably about 1cm greater than it should be. We're talking a jump from 5.5cm to about 6.5cm, pretty significant. I was actually told to take this photo by my private rheumatologist to show to the NHS just to make sure that they believe me when I tell them how it was.

The problem of diagnosing Psoriatic Arthritis

Diagnosing PsA

Psoriatic arthritis is apparently quite a hard illness to diagnose. With other similar forms of inflammatory arthropathy there are usually markers that show up in blood tests that can help in confirming a diagnosis. Psoriatic arthritis is generally diagnosed based on the experience of a rheumatologist and an observation of symptoms.

One of the most objective test that a physician can do in confirming the presence of symptoms of psoriatic arthritis is simple measurements of areas in which there is pain. Generally if there is pain then there will be associated swelling. In fact, my diagnosis was largely based on the dactylitis of three of my fingers. They were swollen to the point that it was easy to see that there was an issue. More recently I have had a swollen DIPJ. The pain is there but the swelling was only slight. In fact, the circumference of the joint was only 0.2 cm bigger than it's equivalent on the opposite side.

Another tool in the diagnostic arsenal is simply to start treating. If you treat with anti-inflammatories and the body reacts favourably then it's a pretty clear sign that there was inflammation present. In fact, the effectiveness of the anti-inflammatories on me revealed more specifically that I was suffering from inflammation more so than the specific blood tests for inflammation (erythrocyte sedimentation rate and C-reactive protein). The problem is, although there has clearly been a response from my body, there is no objective way to measure the level of the response.

Why is this a problem?

I'm shortly (hopefully!) about to change rheumatologist to an NHS one, or rather I'm going to augment my care plan with an NHS one. This is primarily because I have no medical insurance and it would be prohibitively expensive to be treated privately forever. Unfortunately, the NHS rheumatologist is unlikely to accept my private diagnosis on face value. I have some photos of the dactylitis at it's worst in my fingers, which may be the clincher, and my experience with the anti-inflammatories, which becomes less accurate as time goes on. What I intend to take is a full set of baseline measurements of joint circumferences on my hands, as well as a record of the measurements taken by my hand therapist. This is my proof of swelling and specific joint problems. Once I've proved that I'm hoping that they'll take my word for the more objective symptoms.

Feeling good

Oh steroids you marvellous drugs. It's only been 48 hours since I had the injection and the inflammation is all so much better. Gone? Not quite yet but at this current rate I would expect it to have disappeared within the next couple of days. I'm back to bounding up stairs and am alert in a way that I haven't been in ages.

When an illness develops over time it's quite easy to forget how you used to be. I've always considered myself to not be a morning person but recently I've been really struggling to get up. I just assumed that this was how I was. Now, with the steroids kicking in I'm back to waking up alert in the morning. This has easily taken me back several months.

Unfortunately you just cannot take steroids long term. These are a great diagnostic test for me but I really don't want to end up moon-faced and bloated. It's essentially the steroids that finally killed Shawn Lane as he battled to keep his Psoriatic Arthritis under control. That's not something I'm willing to do.

Day 1 of steroids

I don't think I've felt this awake or alert for at least 6 months. These steroids are a wonderful thing. My right buttock still feels massively bruised from where I was injected but the pain throughout my body seems to be diminishing. The newly developing pain in my toes seems to have totally receded.

I do have to keep reminding myself that this is probably only temporary. The Dr said he expected it to last approximately 6 weeks but that I should feel pretty much cured for that period. I know I'll get tempted to think everything's better and try to start working as a guitarist again but it won't do my reputation again if after the 6 weeks is up I suddenly have to start pulling out of work again. The 6 months I've planned to take off isn't to get better, it's to see how I can stabilise what's happening. The more I think about the whole ordeal the less I'm convinced that I will go back to full time playing.

New Career?

I'm definitely taking 6 months off from playing guitar. It has got a point where I just can't guarantee being consistent and I'm having to be incredibly wary of which jobs I choose to take. It has also got to the point that, with all the pain I'm getting from playing the guitar, it's just not a lot of fun any more. It has become a real chore, even more so because I'm very aware that I cannot play now as well as I used to. So 6 months to take stock of my situation and see where life takes me.

A shot in the bum

With my whole body seeming to be flaring up all over the place at the moment I have gone back to my private Rheumatologist to try the next level of treatment. It turns out that this is a shot of steroids into the buttock. Whereas my three previous injections have been into specific tendons to quench the dactylitis at the time, this is a much more general shot that should hopefully relieve symptoms all round my body, for approximately 6 weeks.

As with many of the other treatments that I've been having, this also has good diagnostic value. Many of my symptoms are quite subjective. I'm in pain, and the pain can be caused by doing specific things, but actually measuring any level of inflammation is quite hard. If I respond well to the steroid shot then they should be able to say a lot more confidently that my symptoms are being caused by inflammation, thus tying in with the original diagnosis.

Right now though, I'm stiff all over. I have to find a comfortable position to sit in and when I get up there's a few paces of hobbling until my body gets used to moving again. Last night was a real struggle to play the guitar. I'm pretty confident that if I had a show tonight then I wouldn't be able to make it all the way through it, at least not well. My back is also getting increasingly stiff. I suspect the 2 hour drive each way to work this past week hasn't helped me a lot.

Anyway, I'm off to try and enjoy some Chinese New Year this weekend hopefully with my girlfriend. If there's one thing guaranteed to take my mind off the pain it's spending a bit of time with her.

The difference between NHS and Private Healthcare

NHS: We'll put you on an 18 week waiting list. We don't really care that you can't work at all.

Private: I'll fit you in tomorrow before another patient. Let's do our best to get you back to work in a cost effective manner