Thursday 27 November 2008

3 May 2007

It’s been a while since I wrote one of these, which I suppose indicates that I don’t feel the need to write so much any more. I had a great meeting with Maureen, my MS nurse. We talked about how things are and have been, and she’s going to follow up on my fatigue, and getting my some physio. All good stuff.

I’ve also applied for disability living allowance. I imagine the application process is geared to stop you getting anything, so I tried to read around what they were asking. In truth, not to put too fine a point on it, in some ways I’m fucked. My legs don’t do what I want of them. Walking is a permanent nightmare. For sure I get on with life, but it’s just not the same as it was.

The good thing is friends that don’t care about it. I have one old friend and one new friend, whose indifference towards my ‘condition’ (no idea what is it – a condition, an illness, a disease?) is reassuring. It means I can feel more normal, not that I am defined by MS. After all, my mind still works, and I can get around by car, less easily by public transport, by plane or even modest distances walking. I shall get used to doing what I can, all that I can, as much as I can, when I can.

I plan for my life to be happy, to make others happy and, when it eventually happens, to die with my boots on. Or in bed. But not sleeping. If you get my drift. Life is for living. If the MS wants to stick around, it’ll have to keep up with me!

29 March 2007

I didn't write a blog on this date, which was probably as well, but it's an important date.

Today I had my diagnosis confirmed. That's it. No equivocation. No ifs or maybes. As I recall, the appointment with Dr Brex was a bit of an anticlimax. I'd expected something grand, like perhaps "Well,this is your diagnosis, now this is what we're going to do." If only I knew then what I know now - that there's nothing to do, no cure, no treatment, no nothing.

On the other hand, I got an appointment with the MS nurse, which as it turned out was probably the best thing to happen in this whole saga. Anyway, more of that anon.

22 March 2007

A truly scary experience today. A fire alarm – turns out to be drill, of course – and with no time to think about it I have to walk down 22 flights of stairs, then walk half way across Canary Wharf.

Since I am trying not to affect my employment prospects, I don’t want to tell anyone I have MS. So there I am, trekking down all these stairs, wondering if I’ll make it to the bottom. Curiously, it wasn’t too tricky. Gravity is a wonderful aid, and the fact that travel is continually downward means that my usual problem with walking – not picking my feet up such that I drag them or trip over them – was really not an issue. The walking afterwards was troublesome, especially as my legs were by that time fit to collapse. Nevertheless, I kept going, and made it to the assembly point, then back into the office, without dying.

20 March 2007

I’ve had some very unpleasant thoughts over the past 24 hours. My emotions are swinging pretty wildly after discovering about my next colorectal appointment. I was thinking, I’ve got MS and now bowel cancer (or so it seems), both diagnosed within a few weeks. It crossed my mind that life is getting pretty crowded, and not in a good way. As I was struggling to walk to the station, I’m thinking is this really worth it? If all I’m doing is struggling to merely exist.

Of course the thoughts passed, as they always have. I remain, as I have been since my first encounter with depression, totally indifferent as to whether I live or die. I have no desire to hasten my departure from this mortal coil but, if/when it happens, I won’t be too bothered. I have no great fear of death, and would regret it prematurely only from the point of view of looking after my children.

Life is, after all, a terminal illness.

19 March 2007

I’m feeling less certain now than for some considerable time. In parallel with getting the MS diagnosed, I had investigations for haemorrhoids. Ok, not the most pleasant of things, but it’s fairly common and has to be dealt with. So they stick a flexible sigmoidoscope in to have look around and take a few biopsy samples. Not a great experience in all honesty, nor one of the worst. Watching the journey up my rectum on TV was surreal, to say the least. Whilst the blowing air in to open the passage up was painful.

Visually, all appeared normal, apparently. So I got the follow up appointment, and it’s on the same day as my next neurologist appointment. So far so good. Then the appointment is in the Chartwell Unit at the PRUH. Curious as to what this unit might be – or even why it has a name when outpatient appointments are held in places like ‘Zone C’ at the PRUH – I decide to look it up on their website. And it’s the cancer unit.

So now I have ten days of waiting to find out what they found and how bad the news is, and what they plan to do about it. I’m trying (as the words of a friend are still ringing in my ears when I first got hit with the MS symptoms) not to get ahead of myself, but it’s pretty hard when you find out that all they do in this unit is work on cancer cases and that first appointments for newly diagnosed cases are held on Thursday mornings; my appointment is 9.30 on Thursday morning.

So, given the lack of any visual problems (assuming what I was looking at on the screen was the inside of my colon and not a pre-recording of somebody else – which, conceptually, would be pretty revolting) perhaps the biopsy showed pre-cancerous cells. Ok ok, time to stop the speculation and just wait and see.

Actually, I’m quite keen to know what they’re going to do about the haemorrhoids, to be perfectly honest. That was sold to me as such a simple thing to deal with…

16 March 2007

Saw my GP today. He expressed his total surprise at my diagnosis, but was kind and encouraging. One positive thing is that although the MS is being blamed for the slight clouding over one eye that I experienced last year, that isn’t something that is permanent when it happens. Apparently it can come and go and perhaps deteriorate over time, but it doesn’t bring about sudden irreversible changes.

Other than that, I’ll only know what type of MS I have by experience, by how it develops over the next year or two. So, basically, I just have to suck it and see.

I’m still feeling the tiredness, but it seems that so long as I get enough sleep, it isn’t too bad. Seems like the end to my habitual very late nights and 5 or 6 hours sleep. I am suddenly beginning to feel very old.

14 March 2007

At last I think the headache has gone. The replacement for it seems to be general fatigue. I’m finding the half mile to the station in the morning to be challenging. I give myself plenty of time, but still by the time I get there I seem to be dragging my feet. It’s possibly that I’m generally tired still. I have made a concerted effort to get more sleep, but perhaps it needs a bit longer to have the beneficial effect on me.

And perhaps not going to the gym since they rather inconveniently closed it for refurbishment has had some effect. Life isn’t very straightforward.

13 March 2007

Who’da thunk it? Seven days they said, and seven days it’s been today and finally the hateful headache seems to be abating. It still hurts slightly when I cough, but only a fraction of what it was, and I don’t brace myself when I know I’m going to cough. Thank goodness for that.

As experiences go, it’s been an interesting one. It’s like all those white knuckle ride sort of experiences – before it, you’re wondering what it’ll be like, as it starts you get this feeling of foreboding and dread, and when it’s over you look back and think it wasn’t so bad after all. Well, I do at least. Ok, perhaps I’m the only one.

So I’m waiting now until 29th for the results of the lumbar puncture and the EEG. Now they’re done, I can’t wait for the results. It seems that since I first saw Dr Brex it’s been constant anticipation – first for the MRI, then the diagnosis, now the diagnosis confirmation. I suppose at least I will know this time that I can go on holiday (all being well) with a clear diagnosis and some idea of how things will pan out for the future.

At least that’s the plan.

12 March 2007

Well I made it through the weekend, and hopefully the headache is on the wane now, but it’s definitely not gone. Coughing is still accompanied by that pain in the back of my head. So I try not to cough. And bending down would be as bad. So, naturally, if I need to bend down, I do it with my head held up.

I’m trying to get as much caffeine into my system as possible, since that was one of the things the doctor at Kings said might help. So Red Bull, black coffee, and pain killers that include caffeine are all on the menu this morning. It may have me spinning on my head, but if I could spin on my head, that would be significant progress!

9 March 2007

Will this never stop? After a single day of respite on Wednesday, Thursday was overshadowed by this hatefully painful headache, and today is shaping up the same. So long as I lie down it’s fine. But how can I lie down at work? And I can’t afford not to work (with contract work, no work =no pay), nor can I afford to let anyone at work know about my condition, lest the offer of contracts dries up. Of course it’s obvious I need to go back into permanent work, but that will take a little time to orchestrate I think.

I am, it seems, stuck between the proverbial rock and a hard place. Wriggling out of that place may take a little time and no small amount of creativity. But I have all the time in the world, and significantly more creativity than the average person. But it’s a challenge.

Meantime, I have this bloody never-ending headache.

8 March 2007

I suppose I should have been suspicious that it had all gone so smoothly. The post-LP headache is back with a vengeance today. It started quite simply this morning, a faint sensitivity at the back of my head, reacting a bit if I coughed. Definitely nothing to write home about.

Now it is a constant irritation and really painful if I cough. I can feel it pressing on the back of my eyes. A pain that demands to be scratched, pressed, whatever, and yet of course you can’t touch it.

I also have a bit of back pain, but thankfully not too much. Touch wood.

I took two ibuprofen this morning at about 7. Then another two at about 10. I’m counting the minutes until I can reasonably take some more. I don’t think more often than every three hours is a good idea, since the packet says four hours. :-( I’ll see if I can make it to 2pm before taking any more. And in theory that will be my lot for today. Will have to phone NHS Direct later and ask them I suppose. Perhaps lying down will be ok, so once I get home I’ll be fine. I hope.

I’ll have to skip college tonight and go home I think.

7 March 2007

Yesterday was an interesting day, for two reasons. One was that I had a lumbar puncture, intended to confirm the MS diagnosis (or not, I suppose). The other was that unbeknownst to me (well, it’s possible I knew and forgot, I guess – I’m becoming a little uncertain about my memory at the moment, which in and of itself is a little distressing) I was also slated for an EEG. Well, a kind of EEG, designed specifically to check out operation of the optic nerve.

So it started out as a minor comedy of errors. I pitched up at the neurophysiology department at Kings as instructed, just before 8.30am. Somebody came into reception and asked me what I was there for. Because I thought it was just a lumbar puncture, he sent me down to RD Lawrence ward. Having spent almost an hour in the ward, blood pressure checked, I was then wheeled (yep, chair pushed by a vary pleasant chirpy porter) back up to the neurophysiology department. Where I was told that I’m late, but it’s not a problem. Ah well, the best laid plans of mice and men…

Anyway, I had my eyes thoroughly checked by two very nice people, one in training, who stuck electrodes on my head and had me look at a computer monitor with a moving checkboard pattern and a red dot in the middle. They also did a test with electrodes hooked over my lower eyelids which was, I will confess, a little uncomfortable, but not dreadfully unpleasant. They were kind and reassuring and professional and chatted away to one another. The time flew by and the tests were not too tricky.

I was offered a porter to take me back down to the ward, but I figured I could manage to walk it. I sat next to the bed reading my newspaper, doing the Sudoku (x 4) and being reassured that the doctor had been called and would be here soon to do the lumbar puncture.

It was while sitting there that I became aware of the smell of freshly baked bread, that delicious yeasty smell. This seemed odd as it overrode the vague smell of ‘hospital’. What is that smell? Difficult to describe. It’s not disinfectant (though perhaps it is) or bleach. I suppose it’s just the dressings and sick people and this and that – just ‘hospital’.

Now they were walking around dishing out lunch to some patients, so at the time I figured it was that. And I noted that I was quite close to the staff restaurant too. But do they bake fresh bread? No idea. And I wouldn’t have especially thought about it until this morning. Walking to the station, I noticed the same smell of freshly baked bread. Now, I know, I know. I could have been walking past someone’s house where they were baking bread. It just made me think, because I read somewhere that things going on in your brain can trigger smell sensations that aren’t there, and having noticed it twice, I thought I’d better make a note, just in case it starts happening regularly. It’s probably nothing.

Anyway, back to yesterday. The lumbar puncture was done by the most gorgeous doctor named Michelle. Raven hair in curls, rather like Katie Melua, a professional but kindly attitude. She told me that the local anaesthetic wouldn’t totally kill the pain, but that it would feel no worse than a blood test. Well, as someone who gave blood before they started giving a local for that and had fillings before dentists could use local anaesthetic, it didn’t bother me too much. In the event, I felt a little gentle prick (which might have been the local, or might have been the LP) and nothing else. I’d expected to feel the long needle working its way in, or something. But nothing at all. So, Michelle is a damned fine doctor. Or at least, for what she did for me, she was excellent.

I noticed that her bra strap was twisted. I often notice this on women, and if I know them well enough, I’ll tell them, or if I know them really well, I’ll straighten it. I didn’t tell Michelle, as she might have been a bit freaked out by it.

She told me to stay laying down for at least an hour and preferably two. So I did. After two hours on the dot, my parents came to pick me up. We trekked home through busy late afternoon traffic. I felt a bit of a headache coming on in the car (a common after-effect of a LP) but it was ok. I got home, laid down for a bit, then had something to eat, and laid down some more, watching a movie.

By late evening, having napped for a while, I decided to get up and place an order for the weekend with Ocado (who very kindly had offered me a chunky discount to tempt me back after I hadn’t used them for a while). I’d been sitting there for about 15 minutes and my head started splitting. I tried the usual useless things. Holding it seemed for a fleeting moment to be a good idea, but then didn’t make any difference. So I abandoned all thoughts of Ocado and laid down. Instant relief. Wisely, I stayed laying down.

Later on, after taking some paracetamol and some aspirin and some ibuprofen, I managed to finish my order, but not without significant difficulty. I will have to go and look at it again to see if it makes any sense at all. I got the impression that perhaps I was clicking on random things towards the end.

About 10.30 I went to bed. I found lying down solved all the pain problems. I was able to sleep quite easily although the headache was still a little bit in the background. I woke once, at about 3.30am, but got back to sleep again easily after taking some Benylin to ease this wretched slight cough/cold thing I seem to have picked up from someone.

I woke up feeling ok. I was tired, well my limbs felt tired, but otherwise seemed ok. I took ibuprofen, figuring that I wasn’t going to chance it that it might start hurting once I was upright for a while. Now, by about 10.30, I feel not too bad. My head isn’t totally settled – I notice it is sensitive if I cough - but it’s not pounding either. I’m going to take more ibuprofen, because I figure it’s easier to prevent it hurting than to try to get rid of the pain once it starts.

So there we are. Another step gone through, and another couple of new experiences. And I think my head is starting to ache, so I’m going to take some painkillers.

1 March 2007

So now (after a little bit of help from some very nice people) I have an appointment on 6 March for my lumbar puncture. How exciting! Well, no, not really, but it could be the final step in the diagnosis. I expect it’ll be a pretty unpleasant experience, but then life has been full of those lately.

I’ve been reading people’s experiences of MS, including one person who’s run a marathon after being diagnosed. Now I would love to be able to do that – I can’t say I actually would do it, since I’ve never had much stamina for distance running even at the best of times – but I’d like to feel I could have a crack at it. But I know that I can’t run. At all.

I guess the only thing to take from this is that everybody’s experience of MS is different. I’ll have to get used to what mine is and figure out how to deal with it.

20 February 2007

Well, my diagnosis on 15th was a bit of a shock. I’d got this whole list of possibles, but MS wasn’t on there. Ok, it was a short list: brain tumour, arthritis in my neck, and that was about it. Myasthenia gravis had already been eliminated, so the short list was very short.

But I hadn’t expected anything degenerative or incurable. I’d been sort of keen on the idea of a brain tumour. After all, at least you get to play the odds. X% you get cured, Y% you end up a vegetable, Z% you cark it. But it’s odds, and you can skew the odds by being fit and healthy etc etc. If you’re going to die, at least you know it. With MS, the bastard doesn’t even have the courtesy to give you that. Instead you get dealt the hand of an incurable, degenerative condition, that might every so often give you a bit of a break only to come back with a vengeance. I know that’s a grim way of viewing it, but from what I’ve read, that’s kind of the score.

I have three friends, three very good friends, who are all being very kind, and very supportive of me.

And it’s handy that they are in different time zones, because it means if I need it, I have a friend to talk to 24 hours a day, without (despite their kind offers that they don’t mind) calling any of them in the middle of the night. One in the UK, one in the US, one in Australia. So, friendship is global. I think that’s one kind of globalisation that nobody can find offensive.

And I’ve discovered I’m still as self-reliant as ever I was. I went through the diagnosis all alone. It was hard; don’t get me wrong, it was desperate at times. But I got through it. There wasn’t really anyone who knew how I was feeling, as I wasn’t talking to anyone. For some reason, I didn’t want people to know until I knew – you know the way that once people know half of the problem, they keep bugging until the answer is there. It’s a bit like waiting for exam results – you want to know what they are and deal with how you feel before anyone else knows. In the event, I was able to hide how truly low I felt about it, and nobody guessed.

I suppose it meant it was more of a shock when they did find out, but frankly other people’s feelings aren’t of primary import to me at present. It’s not that I am selfish, just that I can’t share my dark feelings and remain in control of them. I prefer, so far as possible at the moment, to keep my emotions in check.

I told the boys on Saturday. They seemed to take it ok. James looked upset and a little angry – anything he doesn’t like or agree with gets an angry response. Charlie took it quietly, in the silent, contemplative way that Charlie does. How they adapt to it remains to be seen. Liz is talking to their schools so that they are aware, in case things really affect them.



With MS, no one can hear you scream.
(with apologies to “Alien”)

15 February 2007

So there we are. At last I have a diagnosis. Multiple sclerosis. Not one of the things I’d imagined but as bad as some of the things I’d thought of. Whatever, it’s bad enough.

But at least is now had a name. That’s been the most frustrating aspect of the last six to eight months – not being able to give my arch enemy a name or any kind of face. Now I know, I’m not sure I want to.

I’m trying desperately to convince myself that it’s better to know, but I’m not doing too well. I’m not caught in the paradoxical nonsense of being sure I was happier when I didn’t know. Now I have to face up to it.

I suppose it’s a case that now sentence has been passed. Before yesterday, there was always the possibility that I’d been sitting on an uncomfortable chair (I have, but that’s by the by) or caught some virus that would eventually work its way out of my system and hey presto, all would be well again. Now I have to accept that all will not be well again. In fact, all will very much never be well again. Ever. Ever ever ever.

I don’t suppose there is a way of expressing on paper the enormous sigh that I just uttered after typing that last line. Sighs in prose always seem to be a sham, a linguistic trick to imply wistfulness or whatever, but I promise you, a sigh, deep deep breath, forcibly exhaled, was precisely what I just did, involuntarily.

I now face the task of telling my children. I will have to choose my words carefully. I want them to understand without freaking them out. I want to be honest and open, as I have always been.

Last night was extraordinary. A parade of phone calls starting with my father within a few minutes of getting home from the hospital at 5pm via friends in UK, Australia and USA, finishing at about midnight with my youngest brother. At first I didn’t think I wanted to talk to anybody. It seemed such a shock to find out. But then, when it came down to it, it wasn’t so bad after all.

I cried a couple of times, but only by myself, and only for a moment. I think that’s permissible.

17 January 2007

It would be too melodramatic to suggest that I am feeling I have reached rock bottom, but there is no doubt that I’m not feeling at my best. In any case, I’m sure there’s always further to go - however far down you fall you can always start digging.

Although I have only a couple of weeks to go before my MRI, I’m feeling more negative than I have in some considerable time. I seem to be so tired the whole time, and I feel things are getting gradually worse. I suspect in reality that’s just my perception, but perception becomes reality by default, in the absence of any other evidence.

I suppose that part of it is a bit of depression over things in general, as that tends to lead to lethargy. And it could be that I’m misreading things – I’m feeling like it’s really a struggle to walk today, my legs are really stiff, but then I went to the gym last night, so maybe it’s more to do with that. There is a distinct irony in that I can work out at the gym just fine, and I feel really good afterwards, really invigorated, really alive - if exhausted - but it’s doing ordinary stuff like walking along the street that gets to me.

I’ve also gone full circle in relationship terms. I’m no longer approaching anybody because I feel too much of a cripple (hyperbole) to get involved with anyone, so it’s just the occasional person who approaches me. This led to a peculiarly depressing encounter (thankfully only online) with someone who after chatting a little while admitted she served a month in jail only a few years ago for having someone steal her estranged husband’s sports car. I suppose I admire her honesty, but it really doesn’t strike me as a great background for someone I might want to get to know better.

How did it ever come to this?

My self-image is suffering too. I don’t have the ability to keep up my exercise to maintain progress to the body shape I want or even, it seems, to keep my weight properly under control – it’s not that bad I suppose, ‘only’ an extra stone, but it’s not what I want. My appearance had become a very positive part of my overall self-image, since I realised that just keeping myself fit led to control over my weight, and that I then felt really good about myself. That, of course, has gone right out of the window for the moment.

I am trying to address the negativity by focusing on developing my mind, but I know in my heart that my physical self is also important to me. I like to be appreciated/admired for my mind, and I do still believe I have a fine mind, but I also want to feel physically attractive and desirable. At the moment, I don’t.

So, how am I feeling? Well, no longer angry. I don’t think I have the energy to be angry. I feel numb, helpless, alone, lonely, sad, dejected, neglected, rejected. I am feeling in the right frame of mind for writing good poetry - dark, brooding, heavily depressing poetry - if only I could be bothered. It’s not self-pity, I don’t think, just self-awareness.

On the plus side, perversely, I am glad to be alone. I don’t have to worry about dragging anyone else down, which troubled me enormously when I was dating. I don’t have to think about anyone else. Sure, I don’t have anyone other than friends to share my misery with, but that’s a double-edged sword in any case. I don’t have anyone to care about me, but that allows me to be totally self-centred, and forces me to be self-reliant, which I think is a very positive thing.