I’m at Clinic Six. The room is full of people on sticks. They are on crutches, leaning against poles. They’ve arrived with helpers. Turned up on their invalid electric bikes, their automated wheelchairs, their machines for getting around. Rheumatology. Where the world is clearly worse than I imagined it to be. I check in and wait. Read my book. And I’m the only one. Everyone else stares into space.
The NHS Trust here has recently extended its ban on smoking to everywhere on the premises – wards, corridors, ante-rooms, porches, car parks, walkways, gardens, open spaces, under trees, below lamp posts, in the rain and the wind. Totally banned. The nearest place you can now light up is at least a mile and half from your hospital bed, out there beyond state control, in the place where the locals live.
Outside, next to the signs reminding all that cigarettes have no place in an establishment created for the improvement of health, are a line of dressing-gown clad loners. They all have lit cigarettes in their hands. Smoke drifts across the pathway. No Butts No Smoking. Clean Air Zone. No Smoking In This Area. CCTV In Operation. Enforcement here is clearly a problem. Oblivious the smokers stare before them in a distracted daze.
Back in rheumatology I get the full treatment. A thorough body inspection, joint testing, chest listening, pressing, pushing, bending or arms and legs. This is the kind of check-up that the GPs of old would have engaged in but now they no longer have the time. I describe the history of my polymyalgia, the symptoms and their duration, their severity, what I did and what I did next.
We talk about the diagnosis and the treatment I’ve received so far and its effectiveness. I mention the flare and the fact that this return to pain doesn’t seem to be moderating much. I’m advised to stay on 15 mgs prednisolone for at least another week before considering a change. The dosage taper I’d been following was probably too steep. Fear of Prednisolone is one thing but without it the PMR comes right on back. Stick to 15 mgs one day then try alternating that with 12.5. See how you get on.
However, we still need to run a few tests, the rheumatologist says. I’m given a pile of envelopes and request slips, nine of them, and sent out to the nurse. More tests than I knew were possible. X Ray, ECG, three different sorts of bloods, urine (again), bone density, stress, some other stuff. I set off among the corridors looking for Bloods, then ECG, the urine nurse, finally X Ray. This is no good, declares the receptionist, giving me a smile that would frighten horses. This request is undated. She waves my bit of paper in the air. You’ll have to take it back. I look. She’s right. No date. I go to fill it in myself. You can’t do that, shouts the receptionist. Only the consultant can. Right, fine. I exit, lean against the wall in the corridor, breathe in and out a few times, complete the date in biro using my left hand, and then return. Bumped into the consultant outside, I say, my lucky day.
The X-Ray takes 30 minutes. Shirt off, sat in a corridor full of blokes in vests accompanied by their track-suit wearing wives. I read my book again. No one else bothers.
When I get back to the rheumatologist she’s already got my ECG print-out and tells me that it looks pretty healthy. Your joints were fine too. For the other stuff I’ll have to wait. For the bone density and the stress test I’ll need to come back. We’ll see you again in a month. Right.
When it’s all done and I’m back out on the free streets where the whole world could well be in action smoking if they wanted to but aren’t I ask myself how I feel. Better. Worse. Reassured. The last mentioned, I guess. Talking about all this helps, having someone demystify its complexities and offer real practical advice in itself improves health. Back home the spinach leaves, the carrots, the lo-salt crackers and the calorieless sweets await. The fight against face inflation, back hump and round the middle flab continues. Any donut shops between here and there? Nope.
I'm a 59 year old male from Christchurch,New Zealand and have en joyed reading your site as I think we probably started our 'treatment' for PMR about the same time.I have stopped reading the other sites in the Uk because they are a little depressing.Formy own part life is significantly better than 3 months ago.In fact I generally feel great.I cycle most days on the hills for 90mins and guess I now know what drug assisted sport is like.I have no side effects from the prednisone with the exception of some spontaneous sweating and just a hint of a puffier face.I had been waiting for knee surgery but this is now postponed.However the prednisone seems to have cured this as well.My weight is about 1kg below what I was when diagnosed.I sleep better,I feel better mentally and I have virtually no pain and can do virtually any physical activity without issue.I started on 20mg on Nov 17,now 17.5mg and going to 15mg on Jan17.Quite frankly I'm in no hurry to reduce such is the wonderful ride I amgetting from this 'wonder' drug that is prednisone.Felt the need to write this as there seems to be so much negative stuff around PMR.Anyway goodbye from the shakey city in the south,had a 4.8quake last night up from the notmal mid 3's of the last week.Ian.
ReplyDeleteYou are doing brilliantly well, Shakeycityboy, despite the shakey city. Prednisolone doesn't seem to operate in any consistent way. Some people get away with positives others not. You are doing brilliantly. I only wish I could say the same for me. As far as I am concerned the Prednisolone is something I want to get away from as fast as I can. The side effects are considerable. But we manage. And, as they say, more soon.
ReplyDeleteAs someone who has seen more than her fair share of various departments in UHW recently, I had a wry smile on my face reading about the 'computer says no' attitude of the X-ray department. In almost any other environment, it's irritating. When you're a patient or partner of a patient, trying to find out what's wrong and the anticipation of the answer making you nauseous and weak at the knees (for the patient, all of that and the symptoms of the actual illness to cope with), it's like a slap in the face. Sarita
ReplyDeleteI'm glad to hear some of the tests were looking okay. Fingers crossed for the others. x
ReplyDeletePMR is certainly a challenge. Am 12 months in and down to 5mg a day. Try to live a normal active life as I had before but hard sometimes. Love reading your blog and having a laugh relating to the situations.
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