8 September 2006

I saw Dr Raj this morning. He was fantastic, as always. He was really positive, he doesn’t believe it is anything serious, but doesn’t know what it is. He smiled when he said that I should perhaps feel better knowing that it didn’t seem to be any identifiable serious illness, and I disagreed. I told him the worst thing is knowing how I feel and yet having no resolution. If I knew it was going to be like this forever (he dismissed that firmly) or would get progressively worse (similar dismissal) or even that it would progressively (or even suddenly) get better, then I could figure out what to do with my life. As it is, I feel totally in limbo.

He is referring me to a neurologist but said it’s a long wait, but he’ll do what he can to hasten it. I’m quite positive about that as I know he has contacts with neurologists and a lot of his referrals will go private, so he maybe has a few favours to call in. I’ll have to wait and see.

I talked to him about my emotions – that every time I focus on it or talk about it that I have difficulty with tears (which, of course, I did with him too. I continue to make his surgery damp when I go there). He’s given me some tablets (not checked them out yet, but I think they may be similar to ones I had before for depression) to help with that.

He asked me how things are with the boys, did I see them regularly because he knows what a devoted family person I am (I guess all the to-ing and fro-ing when Charlie was small was noted), and clearly knows about my situation. Knows I live alone in Beckenham but clearly has no issue with that even though I’m outside his area, but confirmed my mobile number, so I guess that means he wants to be able to contact me direct rather than via Liz. You know, I really have the most awesome GP. Anyway, I said yep, I see the boys on alternate weekends, and absolutely no problems there. Did I have financial worries? Only if this stops me working, but otherwise nope.

I was going to ask him if he thought gym was a good or bad idea, but I didn’t bother in the end. This is a fatigued *feeling* in my muscles rather than real fatigue (since a fit person can’t actually fatigue his muscles by climbing a flight of stairs) and there’s no reason not to gym it. In fact, I mentioned I’d been about a month ago and no problems, and he made no comment, so I’ll just get on with it. Amazing how one person saying the right things at the right time makes such a difference, gives me a little confidence boost and overcomes my negativity.

There is a curious side to all this. My dad took me to the doctor, as it’s a pig to get to the surgery then straight to work as the only way to get there is by car, and I was chatting to him all the way to the station afterwards, and I had no problems with tears. It seems only when I’m totally honest with people about how grim I feel about it all that it gets to me. Talking about in matter of fact terms seems to be fine. So the doctor gets my tears but others just get a fairly factual report of my symptoms. Which is probably just as well.

Though last weekend with the boys was tricky. I was having to try to get James to be realistic about what I can do with them. I was trying to explain that I didn’t think I could cope with trekking up to Niketown on Saturday and then to the Emirates stadium on Sunday and he kept pushing about it. In the end, I was almost in tears I was so frustrated at not being able to get it through to him, but also not being able to do what was perfectly sensible and reasonable. I felt really bad as I know the boys are worried from the bit that they do know, and I really don’t want them to fret. But I did get James to help by folding his bed down, and Charlie was an absolute treasure doing bits and pieces (or I think he was, though I couldn’t be specific. It’s tough to say when the weekend seems a blur). I suppose I normally let them get away without doing much; maybe that needs to change so they get a bit more self-reliant.

So, the upshot is that I’m more positive. Hopefully the drugs will help me deal with the emotions while the rest runs its course. And I have challenges ahead. Get back to the gym and get started on my MSc. Life isn’t easy, but it’s still good. Fingers crossed it stays that way. There’s a lot that could still fall apart, but I’m hopeful.

Actually, a bit of an update, I’m quite chuffed. Or I would be if I didn’t feel quite so crap. Dr Raj is a GP of goodness knows how many years’ experience (and, I might add, again, a very good one). I think he’s been my GP for 20+, maybe 25 years. And he doesn’t have any idea what it might be. I think that’s pretty cool. Or it means it’s some rare condition that nobody has seen before outside of Equatorial Africa, which is known to disable entire tribes once every 250 years. But, in truth, that seems a little unlikely.

5 September 2006

Yesterday I thought I felt better, well a bit better. It was last night when out for dinner that I realised how much not better I felt. When I was trying to explain how I felt, I was permanently on the verge of tears.

I will talk to Dr Raj about it on Friday when I see him. I think this may call for some antidepressants to stop it going too far, especially if it’s going to take so long even to diagnose. Back onto that madness merry-go-round, it seems. Hey ho. At least I know that underneath it all I’m really quite sane. :-)

And just when you need some good news, life comes along on bites you on the butt. Again. Apparently Dr Cheung’s secretary has no knowledge of me (presumably because I was originally slated to see a different rheumatologist) and in any case the referral letters from 21 August haven’t gone out yet. Well don’t worry love, no rush. If you wait long enough I’ll probably end up being admitted to hospital and then you won’t have to bother. Why oh why is everything so ineffective? Lazy people? Poor record-keeping? A combination I guess.

And the icing on the cake? Yep, there’s icing. She reckons the wait for an appointment to do the EMG is 4 months (even when/if she eventually does the referral letter). Quality! So, basically, from getting referred by my GP, with customary supreme speed and efficiency (from seeing GP to having referral in my hand: less than 48 hours) to having the single diagnostic test that might find out what’s wrong, is going to be an elapsed time of about 6 months. I give up. Excuse me while I go and sit in a corner and cry.

Anyway, otherwise I feel ok. No better, no worse. Today is difficult to gauge if I feel different as I’ve not followed any usual routine. But I’m getting by, which must count for something.

4 September 2006

Today is a good day. Despite having less sleep than usual (I was aware of looking at the clock at 2am and woke spontaneously at 6.30) I felt pretty good this morning. I was aware of my legs feeling less bad than usual (everything is relative) when I arrived at New Beckenham, which was quite a surprise. It was especially surprising given the amount of walking I did yesterday to and at the Emirates Stadium, up and down stairs and the like, standing in the interminable queue to get into the tube etc. I’d felt really tired most of the day, but by the end of it I was tired, but fine.

I still have the numbness in my fingertips, but this is now a curiosity more than an impediment. I’m aware of it most of the time, obviously touch is a pretty key sense when you’re pounding the keyboard either at home or work. It’s not got any better or worse, I have no idea what it’s caused by, though I mentioned it to Dr Cheung and he didn’t comment – which I’d have expected he might if a) it was something gruesomely serious or b) it was relevant to the core issue. I’m presuming it’s connected to the rest of the thing, but I guess time will tell.

It’s quite nice to have a minor positive feeling. I don’t expect it to last – not that I’m being pessimistic, more that I think this is a condition that will take some diagnosing and treatment to resolve, and this is a minor improvement. Almost imperceptible in truth, but something that I felt worthy of note, since I’m keeping this record. If it stays like this, I’ll be very happy, if there is any further improvement, perhaps it might indicate that this is fixing itself, though it’s way too early to speculate on that, and I don’t really believe it either.

Still no sign of my EMG appointment, but Liz phoned me yesterday and offered to try to chase it up today, which was kind. She’s tended to be quite good at sorting those sorts of things out in the past, and I know it’s worrying the kids. I’ve tried not to let them know too much at least in a negative way, but I know it’s not possible to stop them worrying, and it’d be wrong to try to hide what ails me from them.

My weight was a little down this morning, 14 st 13. I ate quite well over the weekend, but also walked a lot yesterday. I’m not concerned at the moment, as it’s only a little, but I’ll keep an eye on it. One thing that occurred to me is that I might (despite stuff I’ve written recently) be losing a bit of muscle mass as I’ve not been exercising for a bit, and my weight might be dropping to it’s natural level for my overall body makeup now that I’ve shed all the excess fat over recent years (muscle being denser than fat and therefore an important factor in understanding body mass changes).

Hopefully when I get back to the gym I can actually keep it up a bit at least, and that’ll help me generally, including helping me feel good about myself. I’ve always loved the post-exercise glow, and I’d be sad not to feel that again.

1 September 2006

It’s getting so hard to work this all out. I felt absolutely exhausted when I got home last night, but can’t tell if that was to do with the stress of going to the dentist (including 2 flights of stairs up to the surgery) or part of the problem. I figure it was the former, since this morning I actually felt pretty ok, despite not sleeping too well and waking up at 6. But then getting the slightly later train, so no seat, then no seat on the DLR, standing for 45 mins, probably wasn’t the best start to the day. I just want to crawl back to bed and curl up, preferably with someone special, but I’d even settle for on my own.

It’s annoying that, I suppose like being tired any time, I can just push through it and I don’t seem to keel over, but I’m thoroughly fed up with it. I want the morning spring in my step back. I want to feel like I can walk for miles. Actually just a mile would do me. Damn it anything, but just not this the whole time. I’m not ready yet to spend my time shuffling round indoors.

I hope the test comes through soon. It’s been two weeks now since I saw Dr Cheung, and he basically wrote out the referral letter while I was in the room with him, so the appointment ought to come through soon, surely. I live in hope.

I was chatting to Heather last night, and it suddenly occurred to me that I can empathise with her, that feeling sick the whole time really is the pits. In the past I’ve not been unsympathetic, but rather surprised that after years of feeling sick all the time she hadn’t become a little more phlegmatic. I can see that if I had to go through this, month after month, year after year, with no sign of any solution, I’d find being phlegmatic pretty tough to manage too.

I wish I could just do something to combat the tiredness. If I knew I could eat energy food, drink Red Bull, take Pro Plus, anything, and it would relieve the tiredness, I’d do it like a shot. As it is, there seems to be nothing I can do. I just have to poke up with it for now. I’m tempted to try coffee, but I can’t see it doing much. I’ve gone more than 3 months without drinking coffee regularly, and I figure my body ought to have come to terms with that and be thoroughly detoxed (if indeed you can do a coffee detox). In any event, it seems improbable that drinking a heap of coffee now would do anything other than give me a short-term boost that would quickly be lost as my body adapted to regular intake of stimulants.

30 August 2006

It’s becoming difficult to tell the difference, one day to the next, as to how my symptoms feel. The baseline is it feels broadly no different, and I think that’s a reasonable description. However, today my legs do feel a little more tired, I think, but conversely I’ve been consciously walking a bit more “normally”. Halfway to the station this morning, I had a brief spell of nearly tripping over my feet. This seems to happen when my legs tire and so I don’t lift them properly. It’s a warning when it happens on smooth level pavement, but I guess if it were to happen on an uneven surface, as it did on the walk near Ightham Mote, on a path criss crossed by tree roots, it would just lead to tripping.

Actually thinking about Ightham Mote, I think I can pinpoint it back to that weekend as the first time I realised something was wrong. Possibly not the first time the symptoms had shown themselves (since it is human nature to ignore symptoms of anything until it becomes a problem), but the first time I was aware that things were not right. I’d deliberately chosen that walk to include hills and if I’d have known how difficult I might find it I’d have done something else I’m sure. So that’s 18 June. Somehow it’s good to have a date. It feels good that I can put a start point on it all.

I’ve also noticed that my fingertips feel a little less numb today. At least I think the tips feel as numb or even more numb, but it’s only the very tips, rather than extending to the fingerprints (or whatever that part of the finger is called – I guess it’s not something we normally have to differentiate). On the other hand (no pun intended) my arms feel a bit strained this morning.

I will need to figure out when I’m going to go back to the gym. I don’t really want to do it during the week, in case it wipes me out – I know it shouldn’t, but let’s remove all the possible worries. If I can do a weekend, then I can have time to recover if need be. And additionally, I can go on the Saturday and Sunday if I get on ok, and then prepare myself for an evening or two in the week. This weekend I have the kids, so that’s out, and I have next weekend free. I guess that’s the time to do it. And it gives me plenty of time to get ready for the challenge.

29 August 2006

So, progress. It’s been a few days since I wrote one of these. I guess no change is the best way to describe it, which counts as good generally I think.

It was suggested that I should renew my gym membership and get back there. I know it’s right. The one time I went a few weeks back, I got on ok whilst doing a bit of a lighter routine, and there’s no reason to think I can’t do it. It’s at times like right now (first thing in the morning – well, first thing-ish) that I have my doubts. I don’t know if I particularly have more difficulty getting mobile first thing, or if it’s just that the start of day is a reminder that things aren’t right, but I feel that if I have trouble walking to the station, what am I achieving by going to the gym? And what if going to the gym wipes me out and makes it hard to get to work? Logically I know this doesn’t really stack up as I know that I walked about 4 miles a few weeks ago, admittedly with a break halfway through, but it didn’t knacker me too much for the next day.

Otherwise, the weekend was full of positives. Saturday started lazy. I’d planned to have a kip as I’d not slept well on Friday night but it didn’t happen for one reason or another, and then I had a bunch of uncertainties as to how I’d get on with driving. In the end, it was fine. It was a bit of a strain holding my arms up for my normal “10 to 2” driving position, but I discovered that at “20 to 4” I rested my arms on my knees, and it was actually all fine. I felt more confident after that, although still a little nervous at that point about driving to Stansted in the middle of the night followed straight away by the journey home. Then I figured that I could rest at Stansted if need be, and if the worst really came to the worst, I’m sure my breakdown cover would kick in in some way and get me home. Or something. Hey, I’m becoming quite used to taking chances! In any case, I really didn’t want to allow this to bring me down, or to accept that I can’t do too many things. Life is too precious for that.

In the event, it was fine. After a really nice evening, and in bed by 10 - so got about 5 hours sleep - the 3.15 start was no great problem, the drive to Stansted was cool and event-free, and the drive home (which was really my greatest fear) was a breeze. No issue at all. And by the end of it I felt no worse than at the start. I even snatched a couple of hours sleep when I got home at 5.45, having been driving for over 2 hours.

I was feeling good enough to drive to the bungalow on Monday for mum’s birthday, but Steve and Chris had already pre-offered to take me, so no effort, and Liz and the kids were going home earlier that others, so I went back with them. All in all it was fine and a nice day too, but only short drives at beginning and end of the day.

So, the upshot is that I faced a real uncertainty over how I would deal with extended driving and got through it fine. I felt tired-ish at the end, but then I felt tired-ish at the beginning too. So it was much of a muchness. :-)

25 August 2006

I’m feeling pretty upbeat today, although physically, I’m feeling no different. I did the long walk to New Beckenham today, and it was not so much a struggle as a challenge. I know exactly how I will feel, and how it will stretch me, so I know how to pace myself. On the flip side, although I went for the later train, which when it pulled into the station I realised is usually packed to the gunwales, standing room only, actually had a bunch of seats. I guess the bank holiday weekend started early for some.

Legs feel the same as always, slightly stiff when I get up after sitting for a while. It’s a peculiar sensation. They really do feel like after I’ve worked out at the gym. In a strange way, they feel like the muscle tone is improving – illogical, but that’s how it seems. Very strange though. I suppose the sensation could be that the muscles are permanently tensed (or more so than normal) or tensing more as I walk. That could give them a thorough workout even when I’m just ambling along. I guess I’m just casting round for my own solutions still. I won’t get a proper answer until they do the EMG, whenever that is. Reassuringly (not) I just saw an article on the BBC news website noting the long waiting times for diagnostic tests. Hey ho.

I didn’t have the head/neck ache today, so I guess that was a stress thing. I have the sensation of something there, but it’s nothing that would be worthy of describing as an ache, and certainly nothing to justify painkillers (which, in any event, I forgot to bring once again).

I’m feeling pretty tired the whole time, despite trying very hard to get to bed at a reasonable time. I seem to wake in the night most nights, which will be a factor no doubt. I think I’ll try to regulate my fluid intake through the evening to ensure that, whatever disturbs me in the night, it’s not going to be the call of nature.

24 August 2006

I have a headache. Well, not a headache exactly, but aching at the back of my neck. I don’t, of course, have painkillers with me, and the pain isn’t really severe enough for me to go and get some. When I was trying to find out what the EMG test was all about, and discovered the condition Myasthenia Gravis that sort of looks like it matches my symptoms, and one of the things it mentioned was the possibility of neck pain as the strain of holding up one’s head had the same effect on muscles there as the ones in the legs do from walking. Of course, it could just be a stress thing – which would also be entirely consistent with me trying to come to terms with a condition that is as yet undiagnosed.

Interestingly (if one finds these sorts of things interesting), I’ve only ascribed this problem to my legs thus far. Doing cerebral work, I’ve not noticed any effect on my arms, for example. This is in no small part due to me having steered clear of the gym for the past couple of months, aside from one visit to see if I still could (at that time, yes I could) so I’ve not done the arm, shoulder and chest exercises that might have shown an effect on other muscles. In all honesty, I’m really a little reticent to try pushing other muscles to see if they give way. It doesn’t strike me as a very clever thing to do, and I’m assuming if this problem is universal throughout my body, any treatment will work on all my muscles. I did mention to Dr Cheung that I’ve not noticed any problem with my arms solely because I don’t use them as I do my legs (I haven’t tried walking on my hands for many years).

Trying not to get ahead of myself, imagining what it might be, is tough when there is so much crap to deal with. I’ve had plenty of support from family but, I suppose slightly stupidly, my instinct is to put on a brave face for them, as I always have done. Since emerging as a newly independent person in my late 20s/early 30s, when I began fully to understand who I am and to express myself, I’ve always internalised my feelings.

What continues to surprise me is that my legs are just as muscular as before. I’ve no idea how quickly the muscles deteriorate if you stop using them (and I certainly don’t exercise anything like I used to – well, I don’t formally exercise at all at the moment). If anything, the muscle tone seems to be being maintained. If I stand upright I can feel the muscles tense up and flex; it’s one thing that still gives me a good feeling about myself, and good feelings are hard to come by right now

As a footnote, it’s midday and the pain in the neck (literal, not figurative!) seems to have abated. I must try to remember to carry painkillers with me though. It’s so much easier not to obsess about these things if you can self-medicate and ditch the symptoms to help get through the day.

23 August 2006

I am unsure any more. I feel tired, but then I’m not entirely sure that’s not to do with the walk to New Beckenham station (too many negatives in that sentence). I’ve tried getting to sleep earlier and it sort of helps, but I don’t seem to sleep longer, or feel much better for it. Last night was asleep by 11.30 but woke about 4.30, then dozed a bit until 6.30. I’m hoping that it will settle soon so I at least only feel tired when I’m exerting myself. It’s a bit tiresome to be feeling tired when just walking slowly – especially as I was banking on being able to stroll around slowly to be my fallback position, i.e. if I couldn’t move quickly or do things normal people can do, at least I could move slowly.

Am trying to remain positive, but it’s tough. I guess when I saw the doctor, I felt that things were moving and at least I was going to be on the road to finding out. Now it’s “between tests”, I suddenly feel alone and that there’s no progress. It’s irrational because there’s still stuff happening, obviously. The blood tests are being checked out, the appointment at Kings is being arranged, all that sort of thing is happening. And yet it all feels quite flat, like nothing is happening. I suppose it’s a symptom of the way life is these days, or at least the way it’s been for me. I’ve been very lucky in life: as a rule, if I’ve wanted something, I’ve gone and got it, things have been within my control. Whilst I’ve got better in recent years at not needing to be in control, it’s been increasingly difficult lately to do that. Being in control means getting stuff sorted out. It’s not quite working like that, but c’est la vie.

22 August 2006

Today has been generally a good day. I got myself out of the flat at the right time, so the walk to New Beckenham was doable, and not a rush, but it wasn’t easy. Today my legs have been feeling “tight”, which I think may be due in part to the bit of exertion I had to do yesterday – or perhaps they’re getting a bit worse - difficult to know which it is. It’s really hard to make objective judgments about how things feel versus how they felt before.

All I know for sure is that things aren’t right.

At least other things seem to be ok. The numbness continues in my fingers, but it’s really hit and miss. Often I don’t notice it – which may be because I’m getting used to it, so I only notice it when I consciously think about it, or it may be that it genuinely comes and goes. Again, it’s impossible to know.

I wonder if my arms have the same problem as my legs, but knowing how my legs feel after exertion, I’m not really too keen on finding out if my arms do the same. Not being able to walk is one thing, but not being able to lift things up – or some of the other things one does with one’s arms - would be pretty gruesome. I’m assuming that whatever they find out about my legs will apply elsewhere too, but perhaps any medication would work equally for both.

21 August 2006

Today has been a mixed day. I went to see the rheumatologist. On the one hand, it has been the first step in sorting out what on earth is wrong. On the other hand, Dr Cheung didn’t have an opinion on what is wrong. So, it’s swings and roundabouts I guess.

He had me squat down/stand up. After about 4 or 5 I was really feeling it. He checked out the reflexes in my legs, which all seemed fine and also the basic strength – pushing against his hands, laying flat lifting legs up, laying flat lifting up against his hand pressing down. That was all fine, other than as I got my legs up to about 45 degrees I had cramp developing in my thighs.

He sent me for a couple of blood tests, including lactic acid – I mentioned to him (though he may have been thinking about it anyway) that I had heard that build up of lactic acid in muscles can harm physical performance.

He’s also sending me for an EMG test. At the moment I have no clue as to what it is. It’ll be an Electro something or other, and I have to go to Kings to have it done, so I guess that suggests it’s fairly specialised.

He mentioned that it’s possible they may never find a cause (Great. Cheers.), but I’m hopeful that’s not going to be the case.

If these tests show nothing, then a muscle biopsy is another possibility, but he wants to rule out more simple things before invasive procedures. Not sure what sort of things a muscle biopsy might show, but I’m guessing that biopsies are usually for some form of cancer, but then having had no real contact with that sort of thing in the past, I’m definitely getting ahead of myself in thinking down those lines.

It was nice having dad come with me. I didn’t really need my hand holding (well, I’m 44 ffs!) but it was nice to have someone to talk to. And in terms of sitting chewing the fat, killing time whilst waiting to see the doctor, spending time with my dad takes some beating.

15 August 2006

Today has been encouraging. Although essentially not having walked more than a few paces for 5 days, it wasn’t too bad travelling to work. I had to trundle down to New Beckenham station, but caught a later train as I was a little later than usual, so as to ensure that I didn’t have to rush – which is what has usually caused me most distress in my legs. It was ok. They didn’t feel like the sort of legs that might run a marathon one day, but they did the job required of them at that point.

They coped with the down stairs/ up stairs/ down stairs at Lewisham, and with the walk at the Canary Wharf end of the journey. I was pleased to get into work, as it felt like a bit of an achievement, although in reality it wasn’t at all.

Food intake has been fine so far. 2Weetabix for breakfast and mint green tea with honey (only drank half, as usual!). Tuna and cucumber sandwich, 2 bananas and orange juice for lunch. Weight this morning was 14 st 12, which is nicely pushing back up.

Bowels normal. Hurrah!

I’m still a little unsure about my legs. They seem to be about the same as before last week’s events – certainly no better (but then wouldn’t expect that) but I don’t think worse. General post-viral tiredness (I presume it was a virus I caught) could be making it difficult to carry out an objective assessment of how I feel.

10 August 2006

So, today I saw a GP, who thinks Parkinson's is unlikely as it tends to start with tremors in upper body and arms, and also said that Dr Raja (who I saw originally with the vague symptoms) is very familiar with those things as he does a neurology clinic and would have thought of it (presumably). Cried in the surgery as I was trying to explain what was wrong. It's a shame Dr Raja wasn't there, as he understands me and very successfully saw me through my depression. I think I will try to see him next week.

9 August 2006

I think today counts pretty much as a bad day. Well, not today specifically, but the last 24 hours. The reason is clear, and I only mention it as a record to myself of one of two things: my realisation that something gruesome has occurred, or a lesson not to dwell on worst-case scenarios without establishing that the worst case has happened.

So, I have been dealing for some weeks now with the tiredness in my legs, and it’s a couple of weeks since I saw the GP and he leaned back in his chair and declared that he didn’t know what might be causing it, and sent me off for a bunch of blood tests. Not having heard anything, I’ll phone the surgery today and find out the results – which I expect not to show anything interesting. The reason I expect that is quite simple. I have sort of figured out what I might have, and I don’t think the tests he sent me for would find it (and if it did, I’d have been contacted by now). And it’s not good.

There was a report on the radio yesterday that rhinitis is an indicator for Parkinson’s Disease, with the suggestion that the inflammation is somehow connected. I may have had rhinitis – well I have some ongoing problem with my nose at least - for a couple of years or more now, so it made me think. I then went and looked up symptoms for Parkinson’s and was pretty saddened by what I found. One of the things is slowness of movement when you start moving, which I definitely have, loss of balance, tick, muscle pain or cramps, tick, clumsiness, tick, tiredness, tick, loss of sense of smell, tick, most commonly affects over 40s, tick. I know, logically, that there are probably all manner of things that could cause those symptoms, but I have a nasty feeling it might be true, like a feeling of impending doom, a dark cloud hanging over my head.

This morning as I was exiting the DLR, going down the granite steps, I tripped and just caught the hand rail so I didn’t land flat on my face. I think I should get used to the fact that I can’t go anywhere in a hurry right now. That’s going to piss me off in a major way since my life has always been in a hurry. Indeed, anytime I’m walking with a woman in heels (her, not me) I get asked to slow down.

I suppose the upside is that there are treatments, although the indications from what I read yesterday were that relief of symptoms is for between 2 and 10 years, after which is stops helping – so that would give me until my mid 50s. Not a great deal of time. But on a more positive note, new drugs come along all the time and make extraordinary differences, and I’m living in one of the best places in the world to get sick. So I guess I ought to be a bit more positive. If I get the diagnosis, and get the drugs, and they have the effect it suggests, even in the short to medium term, there is perhaps still time to run a marathon, climb the pyramids, get into indoor climbing properly.

And then this afternoon I phoned the surgery, and the tests showed nothing. So it is perhaps as I suspect. The only way to find out us to go and see the GP, and get referred to a rheumatologist. Appointment made for Weds morning.

So that’s it for today. My thoughts at the beginning of what may (but I remain cautiously optimistic – since I am at heart an optimistic realist - may not) be quite an ordeal.

The first weekend

I was lucky to have a friend who dropped everything and came to spend a couple of days with me, because this was a deeply low time for me. I didn’t know what was happening, I felt helpless and things were beginning to look pretty bad.

I spent that weekend mostly in bed. I had a temperature and diarrhoea and felt generally like the world was coming to an end – for me at least. But I didn’t feel especially negative or despairing.

Some years ago I dealt with depression – when I say I dealt with it, the truth is that I had a variety of pills that helped me deal with it, but I started to go through a process of self-discovery, where I figured out what mattered in life, what life meant to me. One of the consequences of that process is that I have no fear of, or concerns about, dying.

It’ll happen, one day, but that’s it. I have no fear of it nor, I suppose I should add, any desire to hasten its arrival. It will happen when it happens.

But that weekend, I really did have a feeling that my world was unravelling. Anyway. I ended the weekend alone and afraid. I was unsure what was wrong, but I knew I had to see a doctor to find out what on earth was going on.

I partly figured out that I had some kind of virus, which was responsible for the temperature and the diarrhoea, but clearly there was more to it than that. It was about this time that I started keeping a diary, partly to record for myself what I felt sure had the makings of something a bit unpleasant, and partly because my memory has always been a little on the random side. Some things I can remember easily, usually trivia, whereas things that might actually be important I forget either the detail or the chronology.

So this is the story of a small part of my life. It may not make a lot of sense to you, but you have to remember that, to you, I’m somebody else – and what goes on in somebody else’s life doesn’t always make a whole lot of sense.