Copaxone changes

Thanks to a comment from HoneysuckleB on a recent post, I rang my MS nursing team at big-city hospital to find out if I could switch from the daily Copaxone injections to the three-times-a-week version.

The reasoning behind this is a fairly straightforward one: rather pathetically, I’m dependent on my Outlook calendar at work to remind me to inject.

It actually has a dual purpose. I currently leave work at 3pm, so I set the reminder for then just so I know it’s time to go home. I’ll then ‘snooze’ this reminder for an hour or two after I’ve left the office. When it pings up at the start of the next day, I’ll pop the injection while I’m waiting for the day to start and the kettle to boil.

It’s a seemingly faultless system. It falls down, of course, on the days I’m not at work.

I don’t know how crap my memory is. I like to think I’m still OK but surely it says something when you can take an injection every day at the same time for five days of the week and then completely forget about it for the other two.

And let’s not forget that when I cook at home, make a cup of tea or want to put some marge on my toast in the morning, I have to move that box of Copaxone to one side to reach various items in the fridge.

It couldn’t be more in-my-face, but I still forget to take it.

Anyway, the MS nurses said yes, no problem, and they’re altering my prescription accordingly.

If I were to faultlessly take my medication, the daily shots should deliver 140mg of medication into my system. The three-times-a-week shots will deliver 120mg (with no loss of effectiveness).

I knew the new dosage has been available in the States for a while, but hadn’t realised it had come over here until HoneysuckleB’s comment, so thank you HoneysuckleB!

The brutal brilliance of bladder Botox

I’m away on holiday for a couple of weeks soon and this means taking two boxes of urinary catheters plus an extra box just to cover all eventualities. And that’ll take up a considerable amount of space in the case.

Recent experience bears me out. A couple of years ago, we spent four weeks travelling round Australia. This was an unforgettable experience that involved everything from snorkeling on the barrier reef to cuddling baby kangaroos. The whole holiday was marred only by a kidney infection in the outback (treated) and subsequently running low on catheters in my final week. I was still able to pee at that point, but unable to completely empty, which left me needing the loo more often. In the end, I had to make do by rationing myself to one catheter a day (middle of the night) to leave me enough for the flight home.

Last year things had deteriorated to the point where I was less able to ‘go’. At the end of a week in Spain I had one catheter left for the journey back. I decided to use it before the one hour drive to the airport as I felt the need and I knew I had a few spares in the boot of my car in the car park back home.

Stuck in traffic on the ring road round Barcelona, a text came through from the airline to say our flight would be two hours late leaving. On the one hand, this was good news because we weren’t confident we were going to make it to the airport in time, but it was also bad news for me as I knew I’d need the loo again before take-off. To say I was ‘bursting’ all the way home is the understatement of the year. I don’t think I’ve ever been in so much bladder-related pain.

I recounted all my experiences to my sympathetic MS nurse who laid out the different options. These mostly consisted of different medications to either augment or replace the Solafenacin I was already on.

Of the options presented, there appeared to be only one thing that would do the trick, and a subsequent visit to the urology department sealed it: Botox injections it was.

The theory behind this is you get twenty or so injections into the bladder wall; this causes the relevant muscles to contract and then the bladder can take loads more in terms of volume. The only catch is if you were able to pee by yourself before, you definitely can’t now, so you’re completely reliant on self-catheterisation.  Not a problem for me, of course.

Eventually the day came for my injections. I turned up on time after dropping my youngest off at school and driving the ten miles to big-city hospital. My name was called just as my bum hit the waiting room seat, which at least spared me the torture of the piped local radio.

After a quick, less-than-gentle, wash of the relevant area by what was apparently a sponge on a stick, the procedure itself involved a rod being inserted into the bladder. There’s only one way to get it there folks, but as the rod’s no wider than a regular catheter there’s no real discomfort. It’s wide enough just to enable instruments such as a fibre-optic camera and needle to be passed through.

First, the bladder’s inflated with saline solution so the camera can have a proper look round to make sure everything’s healthy. I had a peek on the monitor above my head to satisfy myself and everything was pleasingly pink with little red veins spidering the walls. Then once the two doctors were happy, handling what appeared to be long thin joysticks, they got to work – one advanced the needle to the next injection spot and the other deployed the Botox.

The injections were as you might expect: they hurt in the same way that dentist’s injections hurt and some more so than others. For some reason – possibly because I have to inject medication everyday into relatively fleshy, relatively pain-free areas – this came as an unpleasant surprise. I was a bit too much of a wimp to watch the procedure on the monitor, opting to grit my teeth and stare at the ceiling instead. I’ll save the joy of that experience for another time, when I’m an old hand.

After about ten injections, they let me know they were halfway through, allowing me to have a breather for a second or two, and then they were off again: 21 injections in all.

And that was it. I was led away to dry myself and get dressed and then my pressing need was to find a loo to empty the saline they’d pumped in.

Apart from me, there were three others in the operating room: two doctors (one female) and a student observer. I didn’t mind, I’ve long since lost any inhibitions about exposing my nether regions to medical staff. I just found it a short, relatively brutal experience. It’s over in ten minutes flat.

I don’t know if it was because it was my first time, but I immediately felt the need to be by myself and ‘lick my wounds’ afterwards. Not easy in a big city hospital with a concourse filled by wheelchairs, visitors, charity stalls, staff waiting for lifts, and people in dressing gowns clutching cigarette packets making a bee line for the exit. I didn’t even feel like sending the promised text to my wife to say that it was all over. I just wanted to shrink into a quiet corner. Even the chocolate I’d promised myself as a reward for being brave tasted flat.

But, boy! What a difference . . . I go to the loo as often as a ‘normal’ person now, four to six times a day, and only once during the night, depending on how tired I am (I’ve even slept through a couple of times). One exceptionally busy day at work, I only realised I hadn’t been to the loo all day when I was halfway home – a total of eight hours. This is a far cry from the bad old days of yo-yoing to the gents and back. I can’t tell you how much this has improved my quality of life. It was totally worth the ten minutes of discomfort.

So how long does the Botox last? I’ve been told it could be anywhere between three and 12 months with most people averaging at six. It’s been four months for me, now, and it still seems to be going strong, so I’m very happy so far. There are no side-effects either – from the Botox or from the medication that I no longer take.

All the better for me to enjoy my forthcoming trip and one more aspect of MS that I won’t be taking with me.

It’s been a while..

I knew I hadn’t updated this blog for ages but I didn’t realise the last time I had anything to say was September 2015.

I’ve been busy caring for an elderly relative (now in residential care) and editing a poetry journal (now resigned), so I’ve either been exhausted or lacking the will and free time to exert myself with anything less pressing unfortunately.

My MS could also be described, to nick Viv Stanshall’s genius description of Rawlinson End, as ‘changing, yet changeless as canal water’, so it might be a year or two before I realise that anything has changed significantly enough to report on.

So what’s new? Three things mainly…

Firstly, I had a relapse involving optic neuritis about a year ago which kicked me into safe mode for a few weeks and I took some time off work. It’s a symptom that hasn’t really bothered me much for over ten years so for it to kick in was a bit of a shock (and painful to start with). All better now apart from a bit of noise in my vision.

Secondly, I’ve lost a stone in weight. I asked my GP to refer me to my local council-run sports centre a while back to try and get myself in shape. I didn’t have the time to do that, though, as already described, so I just put myself on a strict diet of my own devising. This seems to have worked. I’ve also recently taken to waking up at 5am to go for a run round my local neighbourhood (just a couple of miles each time). It’s a good time of year to do this as you have to keep moving to avoid freezing solid. The only other people around at 5am are milkmen, gritter drivers and people who either commute long distances or care about their careers too much, scraping the ice off their windscreens.

Thirdly, I was referred to my big city hospital’s urology department to sort my rapidly deteriorating bladder problems which were a massive drain (‘scuse the pun) on my quality of life.

I’ll cover the last two points in forthcoming posts – bet you can’t wait.

Until then…

Our car has MS

We’ve attributed human characteristics to cars probably since before Herbie went to Monte Carlo in the 1970s.

I used to have a girlfriend, who gave her cars names. Not even silly names, but actual names. I remember she had a Mini Metro called Matilda, for instance. And the kids call my car – a Honda Jazz – Jeff, after Jazzy Jeff the DJ. My neighbour’s Jazz (apparently Jeff’s girlfriend) is called Jasmine.

Anyway, my wife came back to her car the other week to find it had its hazard lights on. Puzzled, she went to switch them off, but to no avail. One visit from the RAC man seemed to put it right, but the next morning she woke to find them blinking away again.

The ten mile drive to work that she then endured with people helpfully flashing their lights at her, honking their horns and generally veering off the road while they gesticulated wildly resolved her to ring our friendly neighbourhood garage. A pick-up truck was duly despatched to tow it home.

After a couple of days it appeared that the mechanics had no idea what was wrong, so when I popped in to see if it was ready, I was greeted by the sight of a dashboard, still in pieces, with bits of wiring tumbling out here and there.

I didn’t fully understand the detailed explanation, but I gathered that they were experimenting by re-routing and connecting different circuits to see if the central locking was the main culprit.

It was all a mystery. Even the experts they’d consulted at Toyota were flummoxed.

After a week of tinkering, the problem was finally discovered and I was able to pick the car up. It turned out that a leak of water had come in via an ill-fitting windscreen and made its way into the main computer causing a strange coppery blue ‘mould’ to spread in a couple of the circuit boards. This had been cleaned off and the leak was sealed.

“You see, when you get something going wrong in the main computer …” explained Arthur the chief mechanic, as he showed me the photos of the mouldy connections and how they’d spread, “you don’t know how it’s going to manifest itself …”

This sounds familiar, I thought.

“… You can get a fault anywhere on the car where there’s electrics and you think that’s where the problem is, but it’s actually the main computer that’s at fault. Does that make sense?”

It made perfect sense.

“It sounds just like me,” I said noticing how my right leg was feeling fuzzy all of a sudden.

I paid the bill, which consisted mainly of a week’s labour, and drove the blighter home.

I patted the dashboard comfortingly before I got out. “Ahhh! You’ve had a relapse!” I said.

Pressing the switch for the central locking, what should be a helpful blink from the indicators didn’t materialise. Checking the doors, they were locked, but some connection had been lost forever.

Hmmm … must be secondary progressive, I thought, turning towards my house.

Not getting a grip

For me, one of the greatest moments of Shadenfreude happened when I saw a woman drop a carton of blueberries in a supermarket.

For a glorious few seconds the small round fruits bounced and rolled in all directions, finding their way under inaccessible chiller cabinets and getting squished and smeared artistically under passing feet and trolley wheels.

A similar moment happened to me in my local Sainsbury the other day.

I’ve noticed recently that communications sometimes break down between my brain and my hands, so I just forget to grip things. Whatever I’m holding: toothbrushes, apples, forks, they all go clattering or thumping to the floor with no warning.

On Sunday at the checkouts, I forgot to grip a large jar of black olives.

I didn’t let on to the staff that it was the MS, or that I had a disability. Embarrassed, I made some excuse about it catching the edge of the trolley instead, painfully aware that I had my 11 year old daughter with me who still can’t live down a cake avalanche moment I subjected her to in Tesco.

The staff looked after her, making sure she didn’t go anywhere near the broken glass, and I heard the announcement for the in-store janitor as I jogged off for a replacement from the pickle section.

On my return (“both hands Daddy!”), the woman from the checkout had emptied my trolley for me and a beaming floor manager re-assured me that it was absolutely no problem at all.

“It’s what we pay her for!” came his cheerful reply after my profuse apologies to the busily mopping janitor. I almost felt like I’d made his day.

Everyone was smiling and helpful and making a fuss of my daughter. I got called “duck” more times than I could count. By the time I had everything bagged and we’d paid for it all, it was almost like we were bidding farewell to old friends.

Of course it’s good customer service to iron out the embarrassment of such events, and a friendly supermarket is one that you’ll want to go back to.

But how marvellous that when the MonSter tries to trip you up and upset you everyone else rallies round to pick you up.

The sting

Well, I’ve been taking Copaxone (Glatiramer Acetate) for about a week now. I administered my first injection under the gaze of my wonderful MS nurse last Monday.

When I was on Rebif I didn’t really inject into my arm or leg, favouring the fattier parts of my anatomy. It has been my arse and my belly that have borne the brunt over the years, frankly, and as such, I am only now, months later, starting to lose the red patches below my navel.

Injecting with Copaxone however is a more serious prospect in terms of injection site reactions. You really do need to set up a rota of sites to pierce as sustained injecting into one area can cause the destruction of local tissue – quoting my newly copaxone-free friend: “You don’t really think about your ass till it’s kinda disappeared.”

It’s particularly important as my injections are now part of a daily regime rather than being a three-times-a-week occurence.

The thing they don’t tell you is how much it HURTS…

“Yeah, it’s like a bee sting,” smiled my nurse, breezily. “I thought I’d tell you AFTER you’d injected.”

Bloody hell!

I felt like my daughters might have felt after they’d walked a mile, on a promise, to the local ice cream factory and found the little hatch had shut early.

It took about an hour for me to be able to bend my arm again.

I asked my friend if the pain got better over time. “Maybe a little,” she lied.

To be fair, the arm is the worst. I can shrug off the pain in all the other areas, but with the arms, I can’t even shrug. It’s like those “dead-arms” we used to administer to each other as an endurance style contest at secondary school… bruised and pummelled limbs hanging weakly at our sides to the puzzlement of our teachers as we entered each lesson.

The plus side is that a daily injection is easier to remember than a Monday, Wednesday, Friday injection. Particularly if you have trouble remembering what day of the week it is or how old you are, like I do.

A tip I learnt off YouTube is to take one of those Sharpie pens and write the days of the week and the injection site on each of the packets. So it might say “Monday left bum,” “Tuesday left leg,” “Wednesday right leg” etc. I also now know a new spot on my legs as well (top rather than side) so that will break things up rather nicely.

Today is “Tuesday left arm” though, so not looking forward to that, particularly as yesterday it was “Monday right arm.” I’m gonna have to rethink my rota, I reckon.

Anyway, in six months time I will have built up enough Copaxone in my system for it to start properly working. It’s the best option for me right now. I’ll keep my ears to the ground with any new developments in disease modifying treatments, and I can always ditch and switch if anything better becomes available.

My other ailment

“You’re looking well.”

There’s a lot of messages on MS related social media sites from annoyed MSers who hate to be told they’re looking well.

Of course the reasoning behind this is that MS is an invisible disease and while I may look OK on the outside… blah blah blah – you get the picture.

Can I just go on record that I will never tire of anyone telling me that I look well, or have a healthy complexion or that I’m an irresistable sex god, because frankly it doesn’t happen that often.

One of my wife’s friends dropped by the other day to drop something off and she remarked about how well I looked. I’d spent a day of industrial action working my allotment plot and while I was still feeling the after effects in my limbs I’d caught the sun and, the risk of skin cancer notwithstanding, I probably do look healthy (I also probably glow in the dark).

If people think they have to complement me on how I look because they know I have MS, then let ’em.

One of the key afflictions for anyone with MS, quite apart from any physical symptoms caused by demyelination, is psychological.

On occasion, if I’ve had a bad day and I’m feeling nackered, and maybe my body hasn’t done what it’s meant to do, I can get quite maudlin. If someone wants to remind me that I look fabulous, let them. It won’t make the MS go away, but it will go a considerable way to healing my other ailment.

And by the way… just so you know… you’re looking fabulous.