This is the UK blog of a 34 year old man from Sussex who was diagnosed with Multiple Sclerosis last year, charting his attempts to get on with life, keep working, stay married and avoid being eaten by his Border Collie puppy.

Thursday, 28 February 2008

Disability Living Allowance & A Blue Badge

There's a thing called the Disability Living Allowance which you get for being a cripple. Its a paltry sum, at most, designed to come in a mobility and a care component, but its the key determing factor (it seems) for the state to decide if you're a cripple. Registered Disabled is, it seems, a thing of the past and the local Social Services (with whom you would register) poo-poo'd it. They ask about it (DLA) on the application for Disabled Tax Credit (worth up to £4.5k and the end goal in this form-fest!), on the application for a Blue Badge for disabled parking (the only truly useful thing that the state can do for me is to allow me to park on double-yellows for up to 30 mins!) and so on. So while it's paltry, its still the keys to the kingdom.

So I did the parking badge application today and got that posted and have started in on the conspicuously user-unfriendly, 40-page epic, Disability Living Allowance form. I should finish it by the weekend at which point I will be waiting with baited breath.

Wednesday, 27 February 2008

Drugs drugs drugs

After much faffing about and attempts to order, Boots finally got me some muscle relaxants, Baclofen, on Saturday. The maximum dose is 100mg and I'm down on 5mg - the smallest pill on the market is 10mg so I have to cut them in half which is good as the higher dose side effects can be show stopping - respiritory and cardiac depression. It can stop your heart and breathing, admittedly mostly in the elderly but still...

So I started taking them and to my immense suprise it relaxed my foot for the first time since I got some magic cannabis over christmas. This meant I could walk in a more mechanically-friendly way which in turn took the pressure off my arthritic knee. I know, I'm a wreck of a man. All of which was good. What was less good is that I was high as a kite all weekend. Absolutely spaced out - for the first time I could finally see what my peers had seen in Ketamine! Luckilly that passed by Sunday night and now its fine - either you build resistance to the side effects or I've got used to it - so at least I can work on it. Otherwise it will just have to be a naughty weekend treat where I relieve the pain and destress but have to vegetate in front of Dancing on Ice or Harry Hill's TV Burp... certainly nothing intellectually challenging!

Saturday, 23 February 2008

The Swank Diet

I'm seriously looking at the Swank Diet for MS. I'm trying to get hold of a nutritionist to see if I can get my saturated fat intake < 20g/day without giving up red meat. You can read about it here, though its referenced in a number of other places and books which is kind of what's attracted me to it.

It may be unpleasant but its got to be less unpleasant than being bed bound and incontinent. Such are my choices, I fear.

Friday, 22 February 2008

Long time no blog

Okay I've been terribly slack and risked becoming a 'wannabe' blogger who starts well and then peters out. I admit it

I got over my attack in January - it passed in a couple of weeks which is down to the beta interferon, the cannabis or both. Since then I've made contact with my frankly excellent GP who got me appointments with both the MS Nurse and the new Consultant Neurologist. I don't see the nurse until the 19th March but the new Neurologist was dreadful. Proper old school - these are muscle relaxants, one of these 3 times a day, see you in six months. The whole clinical arrogance of 'you don't need to worry for I am great and I shall control your disease!'. Yeah, I wish it was that simple.

Turns out that the standard treatment for relapsing-remitting MS during an attack is high doses of IV corticosteroids. Nobody told me. Which is arguably negligent and makes up a good plank of my desire for a '2nd Opinion' (e.g. to see somebody else). There was more crapness around the subject of Sativex where he was either wrong in which case confidence in him is dented or he lied to cover his arse and protect his NHS status. Subsequent information about the guy he replaced, from within the NHS, strongly points to the latter.

Anyway a plan for this treatment is going to be put in place; I reasoned that a week in hospital spaced out on drugs that allow me to be a moody bastard for the duration beats the hell out of a couple of months debilitated and unable to earn money.

Meanwhile I'm trying the muscle relaxant (picking it up today) and have managed to score some viagra to address another little MS gift. The mind is strong but the flesh is weak, damnit! Tho actually I'm a bit worried about my mind since I read a load about the pernicious effects of MS on the intellect and am finding it tricky to concentrate atm. That's much more likely to be the cannabis, I fear! Still gotta KBO (keep buggering on).