Monday, November 14, 2011


My legs seem to have lost their bones. They're both wobbly and weak. It's making work a challenge. Fortunately there's a bit of a lull at the moment so I'm only visiting 5 women and their babies. It's not putting me in the happiest of places. I'm still waiting for the promised remission - it can't be relapsing-remitting MS if I don't get a remission - I demand my remission as promised on my diagnosis letter.

I had my bloods done on Friday so now I'm just waiting for someone to check them and either go 'holy moly!' or find them back to normal. I'm a bit over the old Betaferon at the moment. I'm covered in red itchy welts at all the injection sites apart from the one I did manually reeeeeeeeally slowly, like an iron injection. Trouble is I can't do the jabs in my bum manually - just not dextrous enough.  I can put the needle in but can't push the plunger so they have to be auto injector so sting and will probably reward me with a big itchy red welt tomorrow - great....I'm going to be scratching my bum for the next 5 days!

I did find a 'young and groovy' rollator - the active walker . The woman in the video using it looks like she's having a lovely time but when you get down to it , it's still a rollator! Even if you get a nifty shopping basket, a padded seat that raises and lowers and optional accessories of colored cushions. Guess I'll just have to cover my crutches in diamantes and be done with it!

Wednesday, November 9, 2011

I'm lily-livered!

Actually I'm probably yellow livered! It seems my liver does not like betaferons. My LFTs are very elevated. Apparently a rare side effect - I like to go for the rare and unusual - rare obstetric diseases, unusual foot structure. I have to repeat the bloods and then they'll decide my fate. I must admit the idea of stopping injections is not unpleasant - unless the alternative is daily injections of the non-Betaferon Copaxone. While I wait I'm forgoing alcoholic imbibing - not that much of a sacrifice because I am more of a social drinker as the 8 bottles of wine lined up on the dresser will attest - awaiting an occasion to open.

Tuesday, November 1, 2011

Permitted to park here!

I went to the doctor today to touch base and to get a script for amitriptyline to try and control the restless leg syndrome. I'm a bit worried about the possible side effect of weight gain - why can't I be put on a medication with weight loss as a side effect! She is a really lovely caring doctor and she asked whether I had a mobility parking permit. I was planning on asking about one but wasn't sure I'd convince her so it was a score to have her mention it! It would have been handy  to have one prior to the appointment because parking was terrible!

She filled in the form for me no problem. I then drove to the local CCS branch who administer the permits. I handed over my form and $50 and got an orange placard in exchange! It lasts 5 years and allows me to park longer in P30 and P60s and to of course park in disabled parking spots. It was handy at the supermarket especially since my splints are making it harder to walk while I adjust to them.

My question I getting more disabled or are the health professionals enabling my disability? I am a determined cuss so I will push myself to do things. I will continue to do this because that's me. If it's not convenient to take a crutch then I'll lurch around. I guess it's the mindset of "Harden the f##k up" vs "if they're available to help you, then you should use them".

At this juncture in time I'm prepared to use my crutch as much as possible because it prevents the hideous pain in my legs from trying to convince my spastic right leg to keep up with the left leg. I'll use the mobility parking permit if I would otherwise not go somewhere because it is too hard to get from where I'd have to park without it and the venue. The jury is out on the splints - my hip has felt much better today when I trialled them but I also used my crutch. 

I can see how people get stuck in wheelchairs once they start using them. The schizophrenic nature of MS really doesn't make decision making easy! It's so confusing! Will I never be able to do any proper walking or running or one day will I wake up myself again but with a mobility permit? That's the sucky part - everyone is different  so some people relapse and then remit(?) back to their old selves with just occasional flareups, others don't get better but don't get worse apart from the flare ups and others head down hill and never get a break! Sucks, sucks, sucks!