Sunday, 29 April 2012

lighten yr load

My Dad and me concluded the 'life-laundry' I spoke about before. I was moving a lot easier so I ACTUALLY LEFT THE HOUSE and accompanied my dad to the tip with two car-loads of crap. We've even managed to clear our garage - we could almost fit our car in there now we've got rid of 2yrs of dust sheets, boxes, saucepans. Like I said before, recommended.

The main impetus for all this is that, once I return to my job fully, I'm going to request the option to do more from home.

There's no part of my job that I can't do from home (apart from endless, pointless f**king meetings). And fatigue is a big part of this condition, obviously - by the time I've showered, shaved and dressed myself in the morning I'm usually totally banjaxed.

And before you ask, yes, my (male) boss does comment if I come into work without shaving or in my 'scruffs'. Slightly Tongue-in-cheek, but it IS noted.

So the study is getting sorted to enable me to do this, and maybe create a spare bedroom, too. At the moment if I'm a bit insomniac, or if my leg spasms just get a bit too 'disco-leg', I disturb Emma, and that's no good.

So. 6 weeks (more or less) of continuous relapse later. This has been the hardest one yet:

  • The weather has been uniformly SHIT.
  • Oral steroids absolutely SUCK BALLS. Yes, having a cannula in yr wrist for three days of trips to the hospital is nobody's idea of fun. But at least it's going straight into your system. Having to digest them fully first just made me feel dreadful.
  • This is the first relapse since we've had Evie. The hardest thing has been being unable to help out more with her care. When I gave her a bath the other night for the first time since this all started, it was really emotional for me.

But despite all that, I've managed to achieve quite a lot (here comes another list!):

  • LIFE LAUNDRY.
  • I've got back involved with this blog. I'm not even sure how helpful or informative it is but it has certainly helped me over the last couple of weeks. If you're out there, the odd comment wouldn't go amiss.
  • Oxybutynin is definitely helping me with my bladder issues. Cheers.
  • I've referred myself for some Cognitive Behavioural Therapy.

I was diagnosed 6/7yrs ago and I don't think I've ever really dealt with it. Plus I've got a very short fuse and tend to Sweat the Small Stuff - where's my wallet, where did I park my car, that sort of thing. And there are a lot of great things about my life.

So why am I frequently down about it and myself?

This condition isn't going anywhere anytime soon. Might be a good idea to get some coping strategies.

PS - My appointment is in September...

Going to try going into work for a couple of hours tomorrow. Let's see how long it takes for that to wind me up.

Wednesday, 25 April 2012

now you tell me...

Just got off the phone to the MS Nurses.

When I got my bumper pack of drugs last week, the consultant gave me the Lansoprazole (as mentioned before, these prepare your stomach for the intense oral steroids).

He said he'd put a couple of extra capsules in for me but didn't make it clear that these were an ESSENTIAL. PART. OF. THE. TREATMENT.

Apparently, if you finish the 'roids and stop taking the Lansoprazole, it can lead to chest pains, heart palpitations, panic attacks, insomnia.

Sound familiar?

These drugs didn't come with any literature - y'know the sort of thing that lists every possible side effect under the sun, that used to scare the bejeezus out of me?

Probably could've done with one of those...

one step forward...

So I finished my last dose of oral steroids - that's one last meal ruined!

My mum is trying to super dose me up on oily fish and made some fantastic mackerel pate. Which was totally screwed. Bleurgh.

Later that day, I had a bit of a life-laundry session with my dad, which was cool. Over the last 7 years, I've:

1) got married
2) rented two properties
3) bought a house
4) had a child
5) been diagnosed

(not in that order, obv...)

The point is, I seem to have never thrown anything away - not in some freaky, bottles-of-piss everywhere sort-of-way. Just receipts. Inventories from rental properties. Endless documents for houses we didn't buy.

And I thought I had a tidy mind.

My dad came over with his shredder and the house feels LIGHTER, somehow. Recommended. But you're probably way more organised than me.

So Tuesday was my first day without drugs. And here I am writing this with chronic chest pains at 1am on Wednesday morning. Don't know if it's connected or what, but it's pretty sucky.

I've come downstairs to waffle on like some MySpace saddo in the hope that I don't wake anyone else up.

Just trying to use the next couple of days to rest up and get my strength back.

Then I need to decide what I'm going to do about returning to work - going back full-time straight away, or staggering it with some part-time work and doing some stuff from home.

Oh Dear Diary, whatever should I do?

Sunday, 22 April 2012

heavy metal

Well, the fact I started writing this at 5.30am will be the giveaway to most people reading this - steroid-induced insomnia! This was actually the latest I've slept in since Thursday.

I saw the Neuro in Nottingham on Thursday and after a pretty thorough consultation, we agreed that a course of steroids was the best option.

(incidentally he looked a bit confused as to why I'd waited so long to come in - hey, I was just acting on your colleague's advice and trying to be a good boy!)

As the clinic is closed over the weekend, a 5-day course of oral steroids seemed the best option - aside from cutting the trips to the clinic, the idea of having a cannula in my wrist all weekend while trying to fend off my grabby 1yr-old daughter sold the oral option to me.

Here's my current diet o' drugs

Breakfast

  • Oxybutynin 5mg - to reduce the seemingly endless need to urinate.

  • Mebeverine 135mg - to regulate "fecal urgency" (what a lovely phrase!).

  • Gabapentin 300mg - for the crippling pains I wrote about before. To be honest the steroids have been taking care of them but you have to take Gabapentin on a reducing dose, you can't just stop.

Plus my standard multivitamins and fish oil supplements.

Lunch - where the fun begins

  • Lansoprazole 30mg - oral steroids are so intense that you have to line your stomach with these little beauties 30-60mins before you take them with food - nice.

  • Methylprednisolone 100mg x 5 - the main course, if you like.

Now if these bad boys had a advertising slogan it would probably be something like:

All the metallic taste you know and love - now longer lasting and in a convenient* tablet form!

*stomach-churning

Obviously, you have to take these with food so everything you eat tastes like shit too.

Plus if it's a Rebif day, I have to take Ibuprofen before I inject in the evening.

So I'm 3 days in. The oral variety doesn't have the "jolt" you get from IV steroids, but yesterday I was able to stand and prepare Evie's lunch. I haven't been able to stand that long for ages so this was a big deal.

Then I managed to vacuum the house (in stages - I'm not insane).

But the hardest thing about this relapse has been how little I've been able to do round the house.

Previously it's just been me and Emma. With Evie on the scene, Emma's had to bear the brunt of the housework and the childcare, as well as returning to work part-time.

Our families have been amazing, taking us to appointments and getting us out of the house, bringing food parcels, etc.

And it can't be massively easy for my 66yr old mother (used to accompanying my 91yr old grandmother to appointments) watching her youngest son staggering around a clinic.

Ah well - last day of steroids is tomorrow.

Monday, 16 April 2012

update

Still off work, still no change in my condition, still no sign of it improving.

The weirdest thing about this relapse has been the pain, something I've never had to deal with before (MS related, anyway).

I remember when I was first diagnosed, I read about people using cannabis for pain relief and I always thought, "what pain?". This relapse, it's been really intense, knocking me sideways at times.

FULL DISCLOSURE
I smoked my share of weed in my younger days (in fact, I think I smoked most of your share as well) - has all the stuff I smoked finally 'worn off', and now I get to enjoy my MS pain?

Anyway, FIVE WEEKS in and enough is enough. Have called the MS Nurses and made an appointment for a Steroid assessment - earliest they can get me in is Thursday morning.

Cue 3 more days of me sitting on my butt on my own.

Now - I always thought I was a slacker. Turns out I'm really conscientious (see the last two weeks of working from home while recovering) and I'm going slightly mental.

An aside: Oxybutynin has totally sorted my bladder issues out. Gabapentin is kind of sorting my pain out (now I'm on 3 tablets a day, anyway).

Friday, 6 April 2012

only connect

I'm writing this on a grey Bank Holiday, at the arse end of two weeks off work.

Actually, I say that but it's not strictly true. I had one week off and for the second week I was able to do some work from home.

Now I'm a bit of a nerd and I love me some technology. I remember the first time I used LinkedIn to control my shitty work PC with my much sexier Mac Mini was mind-blowing. Especially when I used it in conjunction with cloud storage from DropBox.

(by the way, if you sign up by clicking that link, we'll both get a bit of extra space!)

But however great all this stuff is, it does mean that you're not really ever off work. Which when you're trying to recover from a MS relapse without steroids, probably isn't amazingly clever.

I've been pretty lucky, though. The weather last week was unseasonably warm so I could sit in the garden with Evie and Emma.

(as an aside, a couple of days back it was snowing...)

The main thing that's been bothering me this relapse has been how it has affected my time with Evie.

Now I always knew that Emma would make a fantastic mum. But I wasn't totally sure about me as a dad.

Over the last (almost!) year, I've got more confident and relaxed. But this relapse has taken all the strength from my right-hand side. Which means I can't do my usual dad stock-in-trade moves - wrestling, tickling, roughhousing, etc. I even (seriously!) miss changing her nappies - just because it's one of the ways you take care of her, y'know?

This means the last couple of weeks have put a lot of pressure on Emma and our amazing families. Which doesn't make me feel all that great, obviously.

By the way, the Oxybutynin tablets almost work a little too well. They give me major DRY MOUTH but they do seem to calm things down a bit as far as urgency is concerned. One week in, I'll keep you posted.

I'm also going to be trying some Gabapentin tablets for nerve pain, presumably due to walking heavily on one side.

Also waiting for referrals to the Physiotherapists and a Cognitive Behavioural Therapist.

At this rate, I will soon be on my way to becoming NORMAL, if not a FULLY-FUNCTIONING MEMBER OF SOCIETY.

Which could be good news for everyone.


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