Got my new bionic legs!

Yuck! I got fitted for AFOs (Ankle-Foot-Orthosis or Anti-Fashion-Object) today. FOR BOTH LEGS! Horrors! They are white plastic with velcro and you have to wear socks with them! It's heading to Summer in humid Auckland! I really wanted to cry when he brought them in. I am really starting to think the health system is taking 'run yourself ugly' to the extreme 'walk yourself ugly'. They do help me walk so that is a gain but they are really not compatible with work!


My working day involves driving to clients' houses - try that with a bit of plastic strapped to your leg and foot! Then visiting them in their homes. A large percentage of New Zealanders have shoe-free homes so the whole contraption has to be removed since the forms fit under inner soles where possible. It doesn't instill confidence in clients that I won't drop their baby when I need plastic to hold up my legs! 


I know all these products are designed to help make our lives easier but it is really hard to adjust to them.  I've done OK with the crutch, although I'd prefer a lilac one with diamantes. I've coped with the red blotches and bruises from injection irritation on my left leg - for some reason that's the only spot that causes problems! I sacked the physio because she was wasting my time and not giving me any thing in return. I sacked the OT when she threatened to come and assess my house for future possible problems - I'll sort them when they occur! I'm sick to death of people thinking I can just move from a townhouse to a single level dwelling just like that! For a start this is Grammar zone! Single level dwellings around here do not come cheap! 


There are people out there who are trying to make more user-friendly AFOs. The best I've seen are those by Allard which are light, and cool looking - the toe-off looks really cool -the woman is running in it!


Yesterday was a downer day. I had been to the Armaghedon convention and done 30 minutes on the wind trainer plus taken the dog for a wee walk the day prior. It was also the day I had my betaferon. I try to do as much as possible on good days (aka days that I'll be taking meds in the evening). Yesterday Simon was running a double marathon - one tacked on before the Auckland Marathon. In the good ol' days I'd have supported him but the optic neuritis means I can't drive at night so he had a buddy do it. I planned on making my way to downtown and cheering. When I woke up I felt like I'd been run over by a steamroller! Then I opened the curtains and saw brilliant sunshine - there is no way I can stand more than 10 minutes in the sun or I get a super exacerbation of symptoms. So once again MS robbed me of another facet of my life! The funny thing was when Simon got home we had the exact same gait! At least I have an easy explanation of my symptoms for my friends who do these crazy distances - I feel just like you do after a marathon/ultra!

Now let me get this right...

in order for Betaferon to help me have fewer relapses I have to endure a few months of my symptoms being exacerbated. So to feel better first I must feel worse....it sounds like a Buddhist saying. "Before zen one must first feel crap". There is a fabled t-shirt which reads "No, I'm not drunk, I have MS. What's your excuse!". Well I need that t-shirt! Today I can't walk straight or talk straight! I also have a red raised area on my leg thigh from the jab 6 days ago. It's not itchy, it's just there. And the optic neuritis is worsened so I can't see straight.


Now here's what I reckon....Betaferon doesn't actually make you any better. It's just for the first 3 month's supply they put in a mild paralytic so you don't function properly. Then after 3 months they just have sterile water and NaCl. So then you feel better and think the interferons are working but really it's just you're not paralyzed any more!


It's interesting observing different people's attitudes to the disclosure of MS. My mother asked me if anyone (meaning the neighbors I think) had said anything about me using a forearm crutch. I told her no but if they did I'd just tell them I had MS. Her newer was "You don't have to tell anyone.". Fair enough but what's the other option? A) lie - "I've got a spanned ankle" or B) "None of your fecken business!". Surely the truth is the best option! Today I had to tell a bank teller I had MS because she asked what I'd done to my leg. I didn't mind - she was the embarrassed one not me.


Today I also confronted two teenyboppers coming out of the disabled toilet. I was quite nice "You know that's the disabled loo, eh?". They looked chagrinned (result!). BUT I then had to use the loo even though I didn't need it or it would have looked a bit petty!

Those motorized scooters are starting to look a lot less unattractive! There is even one based on a Harley! now that's what I'm talking about! And it has a top speed of 16kph! I could throw on a leather jacket, some Oakleys....born to be wild!

Betaferon is a pain in the bum!

I've had a week of Betaferon jabs and I can report that jabs in the thigh or stomach = no problemo but jabs in the butt are a bit owey!  I had to put my long-suffering husband in charge of butt jabs because it's just too hard at this early stage of things! I iced appropriately - I may have frost bite! I got everything ready and handed him the auto injector and then foolishly said "Don't press too hard" so of course the weight of the auto injector pulled the needle down a little so it stung! Tonight was better, a bit more pressure and a lot of icing! It seemed so easy when I was giving women jabs in their bums in the line of duty!


Also in the world of MS, I've been out to Rehab+ to see the physio twice. It was all a lot of talk about what to do and not a lot of doing! I have never been a real physio fan, only really trusting one who is a magician! But I thought she might do something to help my spastic legs or my excruciating hip but alas no! Part of the problem is I have relatively good leg strength even though it is drastically reduced - it's all relative I guess so compared to a stroke victim I'm a super being. Still I kind of resent driving out westish to spend an hour talking about how it's silly to do weight training for my upper body - what's my aim? Duh! to build upper body strength, to tone some cooperative muscles and because I enjoy it. She feels Tai chi or yoga would be more suitable! 


When you get a dire diagnosis, everyone tells you it's important to have a positive attitude but begorra it's hard to when all the allied health professionals have such a dismal outlook! Tomorrow is OT assessment where I have to convince yet another person that "no, selling my house with stairs is totally not going to happen, particularly in the current economic environment" (always wanted to say that!). I have managed to get the stair rails re-attached so that's a start! We have a disabled shower downstairs from the previous occupant so that might earn a gold star! Of course I don't like it and prefer the over the bath one upstairs which earned me a dire prediction of broken hips from the physio! I was also advised to come downstairs in the morning and not go up again until bedtime! I would prefer to simply stay upstairs and be waited on but neither is likely to happen!

I prick myself (like I touch myself but less fun)

Today was my first dose of Betaferon. I presented myself at Neuro Central for a quick start guide to giving myself my interferons. I got a demo, then I tried on the demo and then I was up!


In order to give yourself Betaferon you have to do a little work. First you have to attach the syringe of saline to the bottle of interferons. Not too hard if you remember to take the cap off the syringe. Then you shake it baby - but not too hard, suck it back into the syringe, detach the empty vial and you're nearly ready for business. In fact if you are a brave person you are ready. Now would be the time that you would 'peench an eench' and put in the jab. But if it had been me I'd still be there finger poised over the plunger, too chicken to push it.

Fortunately for chickens there is a lovely auto injector! You put the syringe in, close it up, put it on the spot you want, push the 'play' button and there's no turning back! It slowishly injects you and when you're all done "Ping" a little alarm goes off! It was much less traumatic than I was expecting! I have a supplied ice pack to put on the spot and I bought one as well so I'm all set. 

Once you've done the deed you then open her up and remove the syringe. So you're left with a sharp little needles contaminated with interferons and human. So it must be disposed off. The good old way is to put them in a sharps bin. These will take the whole kit n caboodle which is fine at home. Once it's filled up you give it to the biohazard people. But what if you're gadding off around the world....or spending 3 weeks in the States. You can't as easily heft around a sharps bin. I guess you could put it in your check-in luggage but it's a nuisance really.  Never fear! There is a fabulous little device to stop the hassle of carrying a big yellow bin around. It's called a needle clipper. 

The needle clipper does just that - you poke the needle in a funnel on the side, press a button and the needle is snipped off and you are left with an innocent syringe who wouldn't hurt a fly! These hold 200 needles so last way longer than a sharps bin, can be easily transported on a plane and are pretty easy to use.

So those are the fun toys I got! But wait there's more! There's a stress ball to squeeze, a diary; to mark which of the sites I used so I can rotate around 36 sites before returning to the first - theoretically more than 2 months later; and a mat to use when preparing my syringe - reminiscent of Club in Co in the 70's.

When you travel on a plane you have to carry all your medication with you in your carry-on. Well my medication is a carry-on in it's own right! For a three week trip to California I need to take 11 boxes containing vial, syringe and connector, the auto injector, the snipper and an ice pack. Sounds manageable doesn't it. To make life easy the nice Bayer people even give you a bag to carry it in. So we're talking a toilet bag sized bag you're thinking.....no think more back pack!

Yep! She's a good size! Basically I take that on board and that's my hand luggage now the US only allow one bag! Otherwise it takes up all the space in my carry-on thus preventing me from carrying out my clever plan to fit 3 weeks worth of clothing pretty much in my carry on leaving a whole suitcase for bring stuff back in. - More on that later!