Divots

Well, I’m currently considering my medication options…

Copaxone is the front runner at the moment. Mainly because the other meds available have unpalatable side effects for not much gain, it seems. They might repress the immune system too much as well. I don’t think killing off all my white cells is an option when I have two small kids and a wife who’s a teacher all bringing the world’s germs into the house.

I’m waiting to hear from my neurologist to find out what might be available to me. I had an MRI scan last night to help inform that.

A colleague has been accepted on the hookworm trial, which sounds very interesting, but she is treated at another hospital.

I had a meeting with my neurologist a week or two ago to discuss the whole matter. He seemed to be dismissive of the beta interferon blues and said it was the injecting/flu-like side effects blues instead.

I’m not so sure. Apart from some achey joints once and uncontrollable shivering twice, I’ve never really felt flu-ey. I’ve only ever felt MS-ey.

I allowed myself an inward smile as he described how copaxone might leave it’s mark on my body: “divots like a poorly maintained golf course.”

Now I know where he spends his weekends.

The Beta Interferon blues – update

After just two injections I can feel the familiar feelings returning. Aside from the flu-like side effects (achey joints), I have been waking up, not suicidal, but with little enthusiasm for life shall we say?

One phonecall to my MS nurse later and I can announce that Rebif and I are officially no longer an item.

A(nother) month of no drugs should clear my system and by that point I’ll have a meeting with my neurologist about possible alternatives.

Of course, one of those alternatives might be a lower dose of Rebif, because whatever I say about it, it has done its job by keeping relapses at bay.

But I’m going to celebrate tonight. I’m looking forward to being officially completely drug free for the first time in six years with all the benefits that brings.

The Beta Interferon blues.

I’m about to go back on Rebif after a four week trial period of coming off it.

It wouldn’t be the first time I’ve done this, I tend not to take it on holiday (just a hassle) or over Christmas (to give myself a break).

So, have I noticed any changes?

On the negative side, I’ve noticed some extra dizziness and tingling arms and hands. A couple of days ago I woke up with a partially numb right forearm extending into my little finger, which isn’t usual for me.

And that’s it!

Of course I realise that a prolonged period off the meds increases the chance of a relapse etc, so I’m going to start injecting again tonight to see what happens next.

On the positive side (and this is a big one) I’m happier.

Granted, I’ve been on holiday to Florida over the last four weeks which might explain my improved Disneyfied mood, but I haven’t had the usual back to work blues this time.

I can quantify the improved mood as well.

A couple of months before I came off Rebif, my GP asked how I was feeling and handed me a mood questionnaire. The same questionnaire is available on the NHS website. I scored pretty highly: 15 out of 20, I think, which puts me bubbling under ‘severely depressed.’

If I complete the questionnaire now, I score 3 or 4, and I get those for MS related things rather than anything mood related. I might get up a lot in the night, for instance, because of my bladder.

Because my mood has improved, I’ve been eating less and been more energetic. I’m also sleeping better. My wife jokes that she doesn’t know many people who can go on holiday to the States and lose ten pounds, but I did. Ten pounds!! In two weeks!

Among the listed side effects of beta interferon 1a (Rebif and Avonex) is suicidal thoughts and depression, so it will be interesting to see what happens when I resume the meds. I’ll be monitoring my mood score and contacting my MS nurse if my situation changes.

The medication choices have changed in the six years since I was diagnosed, so if the worst comes to the worst I’ll have some research to do.

Anyway, wish me luck. Time to get those syringes ready.

Losing it

My local supermarkets must have me on their blacklist.

The school run was delayed this morning as I frantically searched the house and my car for my wallet.

I lose my wallet a lot but never really feel like I’ve truly lost it as it often turns up on the floor of my car where it has fallen out of my pocket on the way back from the shops.

I visited both my local Tesco and Sainsburys last night and last remember whipping it out of the rather too shallow pocket of my new jacket at one of the attached petrol stations.

Today it couldn’t be found. Not in any of my pockets. Not in the kitchen where I dumped all the shopping. Not on the floor of our porch or the floor of the car or anywhere in between.

So I phoned each supermarket to see if some kind soul might’ve handed it in but drew two blanks.

On the way to school I thought about what cards might have been inside that I’d need to cancel. It was only when I turned round to kiss my kids goodbye that I caught sight of my work bag and just wondered…

Zipped into the safe outside pocket of my bag was my wallet. I had obviously come home from the shops (late) and stashed it away in a safe place ready for the next day.

I do this a lot. I even once lost a camera and after retracing my footsteps for hours in the rain, I discovered it in a “safe place” at the bottom of the washing basket.

The brain is a funny thing and normally I don’t have that many cognitive problems – I think this was due more to fatigue – it was late and I’m still a bit jet lagged after a trans-Atlantic flight.

I can find the funny side afterwards. I just hope my family and local retailers do as well.

The best drug

I’ve just had a weekend home alone while my wife and kids went to visit friends in the North East.

As usual I had a list of jobs to do and as usual I missed their company.

On the Saturday I made a concerted effort to finish everything. I tidied out our garage making a couple of trips to the tip. I chopped up some wood for kindling, I also changed all the beds and did all the washing, sorting out and putting away all the dry things from earlier in the week.

Jobs done, I treated myself to a curry and had an early night.

I didn’t sleep well, I never do when I have the bed to myself, and I eventually got up at about 7am with a blistering headache.

I had promised myself that I’d go for a run in the early hours as part of my gradual easing-myself-into-getting-fit campaign, but the headache was going to scupper that one. I’d probably slept funny, judging my the pain in my neck muscles, but it felt like one of those dehydration headaches that you get when you’re hung over. One that feels like your brain has shrivelled up like a prune.

I downed two ibuprofen, put the kettle on and ate a banana, thinking…

I was up early for a Sunday and I had time on my hands. If I couldn’t go for a run, why not go for a brisk walk instead?

I’m lucky enough to live on the edge of town and there’s countryside only a ten minute walk away.

So after I’d finished my cuppa, I put on my waterproof and I was out of the door.

Fab! Typically for a Sunday morning there was no traffic and no-one about, just a bloke jogging to start with.

It wasn’t long before I found an old farm bridleway that I used to frequent when I was doing my masters degree and needed to escape, some eleven years before.

At one time I had walked every footpath in that area, but it was so long ago, I’d forgotten half of them existed. I had to remind myself that the vicious looking dog that used to live in one of the farms was most likely dead by now. Some of the eccentric architecture of some of the buildings came back to me like a nice surprise as well, like the un-nervingly tall but thin house standing on its own on a muddy lane or the old rickety house with the stone tile roof.

It was lovely, the sky was still starting to brighten and with my headache now gone. A fine rain dampened my hair. The smell of mud and leaves filled my nostrils. The birds were singing, and a cow stuck its head out of a barn and watched me as I went past.

I said “good morning” to a handful of dog owners. I even shared a laugh with the owner of a large black Labrador that had run, leaping and body-checking me – something that would have frightened me silly at one time.

After about an hour of walking in what had become a steady drizzle, it occurred to me that a strange, yet familiar feeling was engulfing me. Something I seriously haven’t felt for perhaps years.

I was deliriously happy.

Half an hour later I returned home with a box of mushrooms from the local shop. I reckon I walked for about six miles. After cooking up brunch, I sat down, plate on lap, and opened up my Woody Allen box set. I watched Manhattan.

A while ago, I wrote on this blog about a sixteen mile walk I had once done in the snow, a few years before any big relapse and way before I was diagnosed. I wondered whether I’d ever repeat that, whether I’d ever just pull on my walking boots to hit the hills, pocketing an ordnance survey map on my way out of the door.

I’m not altogether sure I will, in terms of distance, but I have resolved, particularly as the days get longer, that if I can’t get back to sleep post-4am, I may just have to cut my losses and make the most of the early hours.

I’m not saying that I’m unhappy, but there are stresses and strains in everyday life that can build up and drag you down, particularly when you have a chronic illness and perhaps can’t manage everyday life in the same way that you used to.

I guess I’ve just resolved to take advantage of that me time while everyone else is buried beneath their duvets. Endorphins are the best drug and I fully intend to become addicted.

Happy Christmas!

Just wanted to wish my followers a happy and healthy Christmas and new year as I’m unlikely to update this site again before the big day.

My life has changed markedly in the past few months with the change in working hours and my bladder problems, so I particularly want to say thanks for the support. It is greatly appreciated.

Have a fabulous festive season everyone!