the tears and music of love

There's nothing better than staying in all day for a delivery is there? The delivery slot for my Rebif was 9am to 4pm so obviously my bumper batch-o-fun came at 4.30pm. Ah well.

And what a bumper pack it was! My delivery included:

1. A month's worth of Rebif
2. Welcome DVD (unwatched as yet)
3. Rebismart injection gizmo with batteries
4. Sharps bin
5. Cool bag
6. Rebif-brand laptop bag (!)

Phew! It was quite dizzying actually - I also got a calendar for all my deliveries for the rest of the year.

What needed to be chilled was put in the fridge and the rest was left in the box until we got to Monday when, following a brief trip into work, I went to be shown what to do by the MS Nurse.

This was fine - despite a bit of faff with one of those rubberised "fake-skin" injection-practice doo-dads - the Rebismart will only do it's thang when in contact with human skin. It also keeps a record of how much you've injected and can inform you if, for whatever reason, the injection hasn't worked properly - very clever!

So the first time I got it to work was when I was sticking it in my belly. I warned the nurse that there may be some coarse language at this point, but I was quite pleased that I managed to tone this down to a (whispered) "son-of-a-bitch".

Then I went home and, to be honest, I felt great and continued to feel great for the rest of the day - no "flu-like" symptoms other than a slight touch of nausea the following day. I also had a physio session on Tuesday morning, which was a bad idea - I know now that early morning physio is a sure-fire way to mid-morning fatigue!

At the time of writing I've had three injections and I feel pretty good, and more positive than I have in a while. My wife says that I'm like "my old self" and a lot sharper than I have been in ages. So here's hoping that I've found my drug of choice!

By the way, the iSite-MS App for my iPod didn't really work out - it's not bad, but it's not that flexible for me; it might work out for other people. Luckily (and amazingly), it's not the only one available in the App store.

IASB heartily recommends and endorses the (admittedly pricier) i-Inject App which I saw mentioned on the MS Trust website. This allows you to: select your medication of choice; choose the days you want to inject; set reminders for when you should be injecting; track the amount that you've injected (which you get from the journal on your Rebismart!); make notes of any side-effects/reactions, which can then be emailed (complete with your injection records), direct to your doctor, Neuro or drug company.

It also allows you to accept or reject your next injection site, with very clear diagrams to show where you should be aiming for - I think it's the business.

Interesting stuff going on at work - but it's getting late and time to switch my brain off for a bit!

updates and odd phone calls, etc

Been a bit quiet just recently, trying to concentrate on being HAPPY and FESTIVE, without thinking too much about BEING ILL. Some chance!

Work ground to a halt last week but not before I had a conversation with my boss on my last day which thoroughly wound me up - not exactly as supportive as I would have hoped. But this needs a more thought-through update than this - I've not wanted to think about the stuff that this chat threw up over the Christmas period so I'll get back to you about this later.

Recently Access to Work started reimbursing me for the many taxis I've been taking to work and back. They're also paying for some snazzy new office furniture - which is cool, considering the faff I've had with them.

Big news is that my Disability Living Allowance has started coming through - only at the lowest level for Mobility and Care components but very helpful.

Especially as we've decided to stop paying rent and finally buy a house - we've been keeping our eyes open for a while but this one came up in the right area just before Christmas. Our offer's been accepted, searches are being done, now we wait for the results and eventually the keys. Look forward to wallpaper updates coming to this blog soon!

Odd phone call - received one earlier today telling me that my Rebif will be arriving tomorrow.

Following my previous post, we thought about our (lack of) options and decided to see how we got on with... erm... breeding, I guess. Which was nice, obviously.

Then we had a weekend in Leeds and, while walking round the shops, my legs started playing silly beggars AGAIN. So we decided that, we should get on with the drugs ASAP (especially considering the up-coming house purchase).

* oddly enough, we had a further note from the Neuro we saw back in November which was a lot more positive about side-effects then we'd thought previously - I'll dig it out to share with you later on.

So there you have it - tomorrow I await what the person from the drug company called "a big delivery" - sharps bin, starter doses, RebiSmart gizmo. I'm going to the MS Nurses on Monday for my first dose and a tutorial.

Hey - in case I have any trouble figuring out where to inject next, guess what? There's (amazingly) an App for that!

the other side

So we went to see the specialists last week. Following my two relapses this year, I now qualify to go on one of the Disease Modifying Therapies. There are four different types, all injections that tend to reduce the number of relapses by about a third.

If you're reading this blog, you probably know just as much about these as I do! If not, have a good look through the MSDecisions website for some proper information.

At the end of the day, the Neurologist and MS nurse recommended Rebif. They demonstrated a couple of auto-injectors (including one called Rebi smart, which looks kind of like a chunkier iPod that tracks your injections and dosage, which would be handy. Thinking about it, a chunkier iPod is a Zune, isn't it?).

So all in all, this sounds pretty cool...

Except for the fact that all of these drugs advise you not to try for a baby when you're taking them. They're all very explicit about the fact that WOMEN shouldn't try to get pregnant. They're somewhat less explicit about the effect that they may or not have on my... "little swimmers" (ahem).

Emma and I are in our mid-30s, we've been together for 6 years, married for 3, so this is something we're naturally thinking about.

So we're now having to gamble on my health. I either stay off the drugs and get on with what the nurse called "making them babbys". Or I start the injections for 6 months to a year, then come off them for 6 months, THEN we start trying for a baby.

And like I said, we're in our mid 30s; not a massive issue for me, but definitely one for Emma. But having said that, the longer we leave it, the more chance there is that I will be... shall we say, "less active" than I would hope.

God, I wish we didn't have to think about these things!

the crudlines

Just a quick post to fill you in on the headlines of the last week or so - tomorrow we go to discuss Disease Modifying Therapies.

Brave New World, here we come!

1. Still on the 'half-a-tab-a-day' of Modafinil. I do feel a little bit sharper, especially at work, but I still need to have a nap after coming home. Have toyed with the idea of increasing the dosage slightly but I'm waiting until I speak to one of the professionals.
   
   
2. I've been getting taxis to work, to be paid for by Access to Work. This didn't start off too auspiciously - the first driver BROKE WIND the second I got into his car. This hasn't happened since.
   
   
3. The OT visited me at work with a guy from Shape Seating. Together they've submitted a report with some recommendations for my workspace - and they've also approached Access to Work to get a grant for the adjustments. It's all looking pretty positive, so hopefully I'll be able to tell you about my spanky new space-chair - fingers crossed.
   
   
4. I got my Disabled Parking Badge last week.
   
   Bit of a mixed blessing, this one - it will undoubtedly be very helpful for me and enable me to get to work-meetings and park in more convenient spaces. I will, however, have to put the damned thing in my car, which is what I'm having a problem with at the mo'. It's just the idea that I need one is jarring with me a little bit - but I'll get over it.

So tomorrow we go to talk about drugs and daily injections and all those fun things. I told myself that I'd have a really good look into all the options and do some serious research. But that's not happened - there's always tonight!

i love the sound of a jukebox playin'

[the title to this post doesn't mean anything, it was just the first line of the song i was listening to at the time]

Halloween weekend was spent at my sister-in-law's in Leeds. We had a great time - the drive was a bit of a test for me and my non-existent stamina but we managed fine. The scariest part of the whole weekend (it being Halloween and all) was my constant need to know where the nearest toilet was - oh my wacky central nervous system and the Ker-azy messages you like to send out! I will bring that up again when I see the MS Team later this month to discuss DMT's (that's Disease Modifying Therapies, kids - who doesn't love a wacky acronym?).

Other than that, I've been continuing to dip my toe back into the world of work - 4 to 5 hours a day seems to be enough for me, and my employer is very keen for me to take my time getting back to full-time employment.

Due to this and the imminent, perfectly-understandable-but-temporary drop in my wages, I got back in touch with Access To Work and had THE STRANGEST conversation with the adviser I've been dealing with.

If you remember, I'd had a bit of a run-in about the amount of support they were offering to me - but now, due to the fact I'll soon be on half-wages, the idea of getting paid-for taxis to work makes more sense than paying for petrol and parking out of my own pocket.

When I got through to the adviser he said something along the lines of, "Well, we didn't end the conversation very well when we last spoke did we? To be honest Steve, I thought that you were taking out on me personally when I'm trying to help you out as best I can. It wasn't very good, was it?"

Now, I have a relatively short fuse (and a shit memory - I wish I could've recorded both conversations!). But this phonecall took place while I was at work - I share an office with my boss who ASSURES me that I didn't lose my temper; if anything, I just ended the conversation a bit quickly but that's all.

I thought it was bit odd that I'd not received my claim forms!

Here's a message to the trainers of the Access to Work advisers:
It's not big and it's not clever and no-one should stand for getting bawled-out when they're at work. But someone needs tell your advisers that the people who are calling in for their assistance will have taken a while to get the courage to make the call in the first place. They'll probably have been sent from pillar to post by various health organisations looking for some straight answers to some pretty big questions.

Guess what? When they get through to you, they may be getting to the end of their tether. If you think YOU'RE having a hard day, come round my house when my wife's sobbing. Or maybe when I'm getting such confusing messages from my body that I think I'm going to crap myself as soon as I leave the house.

In short: suck it up. Or learn to empathise.

[I know - the same could be said to me but still...]

Earlier today, I took my first Modafinil anti-fatigue tablet - they've been sat on the shelf for a few weeks now. I checked out a post on the excellent Shift.MS website, where one of the members was talking about how they find that taking half-a-tablet a day does the trick for them. The dose I've been told to have is two tablets a day, so after checking with the MS Nurse, I took a half.

No side-effects yet - I did feel a bit speedy but I seem mentally a wee bit sharper (not hard judging by my recent cog-fog) - I'm watching this shit like a hawk (understandably this time) so I'll bore you about this some more later.

swings & roundabouts

Apologies for the venting yesterday - I think we all get like that some days.

Today I had a visit from an Occupational Therapist based at Derby Primary Care Trust. She came into where I work and had a look at my workstation and the general environment. She's writing up a report for my employees with some recommendations which would make life a bit easier.

Best of all, she's going to contact Access to Work (see yesterday's ugly post) to say, "These are the changes which I recommend, are you going to help pay for them?"

Sometimes things go well and there are some good people out there.

the dark side

Hey Steve - why so glum?

First things first, returning to work was absolutely fine. Everyone there has been really understanding and sensitive. I've been doing four hours a-day which has really been enough for me, to be honest.

On the second day there, I resubmitted my application for some assistance through the Job Centre's Access to Work scheme. A few days after that I received a letter from them which said that my application was 'eligible for consideration'. Which I took to be a 50% 'yes'.

After two four-hour shifts it was the weekend, which included the last of my booked Reiki sessions. I'm still really conflicted about this whole thing. As I've said previously at the very least it's a really mellow and relaxing experience. But Trish kind of lost me when she said that if I started to feel tense, I could just call her up and she would 'send some Reiki' to me. Now, don't get me wrong - Trish is a very nice lady, and I know that SHE believes in the worth of what she does, but when she said that my cynical side had to cry 'bullshit'. I don't think I'll be returning for more, which is a shame.

The following day, on the advice of a health professional, I submitted an application for Disability Living Allowance. I don't know how many of you have done this but it's single-handedly the most DEPRESSING thing I've ever done.

My MS is of the relapsing and remitting variety so I had to answer all the questions as though it was the very worst of all possible days - all the symptoms, all the mobility issues, all the assistance which I could possibly need from my family, etc. I know that we're all aware of our own personal experiences with this bloody horrible condition but to get it all written down... not exactly how any of us imagined our lives working out, I'm sure.

On Monday's where I work, we always have a meeting of the Senior Management Team on a Monday afternoon. As such I had the morning to myself so I thought I'd spend a bit of time on the Wii-Fit (which I've mentioned before).

Well, I totally overdid it. My body and what little muscle and conditioning I've had has totally turned to shit - couldn't do many of the exercises, although ironically my balance wasn't totally shonky. Plus when I got to work in the afternoon, I ended up staying too late.

Since then I've been getting better about managing my time and the rest of the week passed pretty much without incident. I spoke to one of the nurses who said that the effect of fatigue on people with MS is kind of like a cell-phone battery gauge, and getting ready for work (showering, shaving, getting dressed, driving in, parking) effectively takes up half of your energy store.

I know this is nothing out of the ordinary for people with MS but for fucks sake, I'm 36 not 63.

I shouldn't be in a wheelchair getting pushed around the hospital by my 62 year-old father. I shouldn't need support from my amazing wife getting in and out of the shower. Also, I shouldn't have to be so completely reliant on her. Here's a small but relevant case-in-point: I will never again go to the counter in a cafe to buy her a drink because I can no longer carry the tray. Plus my legs will probably be playing up by this point so she'll insist that I have a seat. I know she'd say that she doesn't mind but I fucking mind!

The fact that I'm a drain on her energy and time is something that I think about constantly. Plus the real kicker, the one thought that breaks my heart: I'll never play football with my nephews or children.

Hey Camel, could you manage just one more straw?
*crack!*
Whoops...
Today I heard back from Access to Work - I'm currently driving in and paying to park close by to where I work - but to claim back the petrol from ATW would work out at 25 pence a day. And they don't pay for parking because everyone has to pay for that.

The problem with my application is apparently that I still have a driving license and am still able to drive, following my disclosure to the DVLA.

ATW have said that they'll give me £6 a day for taxis to and from work. Which I would have to pay for and claim back. Plus they'll only do this for 3 months - because they want to know what the outcome of my DLA application might be.

Sorry for all this whinging - today has been a real pain in the arse.

On top of all of the above, since I've been back at work I've been feeling really out of the loop and not exactly 'up to snuff'.

I used to be so good at my job and I used to be really conscientious. Now I can't keep things in my head, I can't multi-task, I feel like a total flake. I'm starting to feel that some of my colleagues are thinking these things too - but I know if I tried to push myself to 'prove them wrong'. it would not exactly be beneficial to my health.

What a load of old crap.