A.J. Walker

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A Mellow Update

Today I had a double MS day comprising a Copaxone delivery and a call from the MS Nurse. The delivery came as timed: it was expected to be between 1 and 3pm and it arrived at 1:45pm including a handy text to say I was next up (only kinda handy as for all you know the previous delivery could have been 30 miles away - I’m guessing that isn’t usually/ever the case).

The call from the MS Nurse came just before 2pm, and it had been scheduled for 2pm. It was a really short call. I confirmed I had nothing to report re changes with my MS and wasn’t experiencing any significant issues, as far as I could tell, with the self injecting thing. Confirmed I was rotating around 4 locations (left & right belly and left & right leg) and that I was making a note of the location each time (and that I hadn’t missed any scheduled injections). All in all straightforward.

She said she’d schedule the next call/appointment for 12 months hence. Obviously in the meantime I’d call the Walton Centre if something changed or I need advice.

Hopefully things will continue as is…

Onwards and Upwards.
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Steps and Steps

When I first got the diagnosis of MS (or at least after the time it took to get over the initial shock) I decided to walk regularly and I set a lower target than the “10000 steps” generally talked about in terms of keeping fit. It was multi reasoned, 1) to prove I could and 2) just to regularly exercise (it would be too easy to hide away in the house with a spurious excuse available on tap). And early on I was very much doing the amended target of 8000 steps most days; and occasionally significantly more.

Recently I have not been achieving this often at all for a variety of reasons. I think partly because I knew “I could” that reason to do it disappeared off my radar. I’ve had a couple of other issues which have stopped me entirely for a while including a dodgy foot and also a knee issue (neither MS related as far as I can tell) and then last week when I was confined to quarters with the ubiquitous ‘Ping’.

Since the start of the July I’ve only been above 8k steps seven times. That’s over a period of 26 days.

I’ve decided I need to get the regularity of achieving this original aim back up. Not be anal about it, but just to do it more often. I kinda think I can, but at the same time I’m aware that if I’m not doing it then I may not notice if and when any things go downhill.

This past week I’ve felt more “buzziness” in my feet and legs. It’s not necessarily anything to do with MS. For a start for half of last week I couldn’t leave the house and garden and so exercise was a little constrained. On top of this it was damn hot so dehydration may have been an issue. And lastly my prescription for blood pressure tablets lapsed at the wrong time (they get dispensed at a chemist which is shut for much of the weekend) so while I don’t think any feeling in my legs are likely to be due to stopping taken blood pressure medication for a few days, it is another factor to consider.

In any case the buzziness is nowhere near as bad as it was when I first had the “waist down” issues. Apparently temperature can be a significant issue with respect to MS (so much so that it was historically used as a diagnostic tool: they’d plunge patients into a hot bath to see how they’d react to the heat (presumably other than get burnt skin)) so maybe the heat we’ve been suffering from for the last week or two has been a contributory factor to this slightly returned buzziness.

For the last two days I’ve walked into town (about five miles) and these two days have been okay. I’ve got the walk done without any particular issues: they’ve felt quite tired the last couple of days when on the steps down through Everton Park. But that could be just normal fatigue towards the end of a four or five mile walk in the heat - as opposed to anything more “medical”. At the end of today I’ll have exceeded 10k steps on only three days this month: two of which will have been the last two days. It’s an hour and a half to walk into town and maybe I should simply schedule do it three or four times a week. It’ll get me exercise back up to where it should really be. And I can keep an eye on any obvious differences for how my legs - and the rest of me - feel e.g. maybe next time I go down the steps I’ll feel better as the heat will be less of an issue.

I think I’ll return to the aim to walk an average of 8k a day i.e. achieve 56k/week not worrying about days I don’t walk 8k as long as I do the extra steps on another day.

In fact after just typing that sentence I can see it makes sense to keep recording it (not that my phone doesn’t do that automatically anyway). So after each week I’ll put a total up my steps for the week… and woe betide it’s below 56k (clearly if one week is below the additional steps will have to go on “catch up” the following week - surely?). The last week of the month could get scary if I don’t keep up with the numbers early on. Then again if a month falls below… well, you get the picture.

Onwards and Upwards (in terms of step numbers at any rate).
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Leg's Up

Since starting on the Copaxone I have just been injecting either side of my belly. I am aware though that you should rotate the positions of the injection sites to reduce the damage done to areas of the skin and below. Many of the suggested areas are out of question if you live on your own: back or back of the arms etc. And while the guidance is probably conservative - and includes the people who are injecting on a daily basis as opposed to three times a week like I am - it was definitely worth getting into trying new places to inject. So for the first time today I injected into my leg. I have read how some people find it more painful and I thought it could be. After all there is a lot less fat to inject into than in your mid regions.

The first thing to do (once you’ve psyched yourself up to do it) is to change the setting on the auto inject pen. On my stomach injections it is set to “8” which I think equates - or thereabouts - to millimetres. With the reduced depth available to you in the front top of your leg I halved the setting to “4”. Then it is a question of pinching up the skin on your leg and pressing the auto inject pen as per the norm.

LegStab
Ready for the leg

In actuality the pain was no more or less than it has been with the belly injections. So far, a few hours later, I have not noticed any more pain or swelling either. There is obviously a slightly raised area a couple of inches across due to fluid going in there. But there is no discolouration of the skin or background pain (by that I mean discomfort before I touch the area). Assuming nothing changes in the coming day then I will happily use my left leg for my next jab then continue to rotate the sites as left side of belly, right belly, right leg, left leg. Doubling the injection sites can only be a good thing.

I have read that some people do get problems with the injection sites after long term use and go away from using the auto inject to self injecting using the syringe and thereby controlling the speed you push the fluid in. I’m not sure about that at all. But I guess you cross the bridges you come to. So far so good though.

Onwards and Upwards,
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Feeling okay

Hey, another Copaxone blog. Must be something wrong then? Nah. Just a note on how I’ve been finding it physically. I’ve been putting the jabs in without any problem so far (other than the very slight issue mentioned in the last blog). Thought it would be worth putting down how it has felt to me after the jab, so anyone starting up - or considering it - wonders how it will/should be (assuming I am in anyway “normal” (that seems a tad unlikely of course)).

I was thinking that I can feel something in the area of the jab (not from the needle; that’s fine). And not sore exactly just a little discomfort or something obvious but not concerning which I can feel when I move or stretch the area of concern. The relatively vague feeling lasts a couple of hours or so - and then becomes absolutely fine.

I spoke to my mate about it who has Type-1 diabetes and is jabbing himself every day four or five times. Chatting and it dawned on me that a) he’s used to stabbing himself daily multiple times - and I’ve only done it seven times so far and b) he’s injecting a fraction of the volume into himself that I am. I’m putting a whole syringe in (1ml) and he’s popping in whatever his calculated dose is at the time. But not one syringe worth.

So of course I can feel it in the area I’ve injected: there’s 1ml of liquid I’ve squeezed into the subcutaneous area of my belly so it’s going to feel a bit funny for a while before the liquid spreads out to wherever it has to go and visit.

Anyway, I hope you find this reassuring if you’re looking at or starting up. So far, so good. Onwards and Upwards!
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Live & Learn

Yesterday was my 3rd Copaxone jab ever; and hence my second go on my own. Wonder if I’ll count them all? Probably not. Let’s face it, it should be just multiplying each month by the 12 jabs. It went okay. Apart from I tried doing it without using the booklet. Probably should have done it a few more times before doing that; rather than just the once.

CSYNC-2

I made one slight error; which I won’t make again. May have resulted in the needle being at a very slight angle from what it should have been. Certainly felt it a little more than last time when I removed it. And it looked a little out of kilter after I took it from my stomach (LHS). Put it a few inches to left from last time I used that side. The mistake was me taking the lid off the syringe before pushing the syringe back into the injector. My bad: I should have pushed the syringe into the CSYNC and then taken the lid off with its red top. Anyway I’ll live: And I’ve learned.

The strange thing with the Copaxone is that it is taken three times a week - exactly that and not every two days. So my next injection is an epic three days away. With electronic calendars it is easy enough to set up reminders anyway. Some people are on a lower dose but inject every day. I think it’s either 3 doses of 40ml or 7 doses of 20ml. Three doses seems best for me.

Onwards and Upwards (if slightly askew).

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