Friday, 3 August 2012

Fatigue, my nemesis

Many people with auto-immune diseases (such as MS) suffer at one time or another from fatigue. This is not I'm a bit tired and need a nap, this is (like a car running out of fuel) I'm going to break down and stop - no matter where I am or what I am doing.

Recently the fatigue has been crippling me. I was (before my annual leave) back in the Monday to Thursday go to work, come home, eat, sleep and rest in bed all weekend routine. Life was passing me by and it was getting to me (big time).

I rang my MS Nurse to ask about fatigue meds. I'd tried Amantadine earlier in the year with no effect. I wondered if I could try Modafinil again. I'd take it before but it was so effective that it kept me up at night. Now I take so many meds at night that make me sleepy I wondered if it might 'trade-off'.

The nurse wrote to the doctor who wrote a prescription as I'd had it before. Collected from the pharmacy and first dose taken.

Last night I was exhausted when I got home, I had plans that involved doing nothing today. Right now I feel that I might actually have energy. If my body worked I think I could do stuff. Sadly my legs are still stiff and inclined to give out, I still have no balance, my hands are still numb and it took me a minute to come up with the word routine in the paragraph above!

Day one so a long way to go... first hurdle will I be able to sleep tonight?

Incidentally the possible side effects read (largely) like a list of MS symptoms!

No Go Britain?

Yesterday I made a rare trip into London by tube. There was a lot of discussion in the run up to the Olympics about accessibility issues in London. I had some issues last night but some of these were caused by the Games themselves. In other areas steps seem to have been taken. Are these permanent or just making London look good for its visitors?!

Before I left yesterday I decided that given the likely crowds and my destination (a bar) that much as I wanted the wheelie-walker I'd better make do with the crutches.

Getting bathed and dressed had already used up a good part of my spoon store so rather than get a bus to North Greenwich station I'd call a cab. Not £7 well spent. North Greenwich and The O2 (or North Greenwich Arena as the Olympics call it) has been over-run. LOCOG you owe me that can fare!

The first problem is that unless you are a bus you can't get near the station. My driver made sterling efforts, but despite this the nearest we could get was a car park nowhere near the station. I then had the equivalent walk (and a bit more) that I hadn't taken to the bus stop back to the station. Legs on the way to giving out.

At the station I discovered that horror of horrors the cab rank I had earmarked for my journey home had been turned into some VIP drop-off. The cabs were, it would seem, somewhere back where I had just come from. Cue muttering and more muttering from me.

I navigated successfully to the platform via two lifts and happily a terminating train was about to head back out. That guaranteed me a seat at least.

At London Bridge I headed to the lift at the far end of the platform. Just to demonstrate how accessible the tube is there were stickers on various doors advising where to get on for level access at stations like Green Park (train above platform) and Wembley Park (train below platform). Are these permanent aids to get on and off the trains or just for the Games? If permanent then perhaps keep the signs? We are SO accessible for the Olympics, but other times - well the wheelchair and I have personally suffered "how to get out?" at Wembley Park.

I had reached ticket hall level. Chaos of people everywhere. The exit I wanted was marked 'no entry' and I was being directed off on a route march. My legs were again about to give out and I was desperate to sit down. I asked the guard if I could please come through the short route. For once red-tape lost and he let me through (sometimes I think they can tell you might make a scene, or even worse cry!).

I stopped for a re-charge and an iced latte in The Vaults. Next stop main concourse level. The lift is out of commission (due to the ongoing refurbishment) so I used the escalators. I presume there was a contingency plan if I had been with one of my wheeled aids?

London Bridge is halfway through its Shard related regeneration. This means there are hardly any benches - no good for the infirm who need regular rest breaks. I had lost where I was to meet my friend in the station redesign but eventually navigated many barriers and found the old bit and platforms 1-6. The usual exit was shut. Have they put in lifts at the middle platform exit otherwise anyone with mobility issues is in trouble as the footbridge didn't have them when I was there six months ago.

We had a great evening out. At the end one friend went off to the mainline trains and my other friend and I headed back to the tube. The lift at the Borough entrance takes you to
the Northern line. We realised just in time!

The tube was, predictably, busy. By some fluke my pregnant friend and I both got seats. Back to North Greenwich. I had decided against the route march to the distant cab rank, opting for a bus. Of course my choice is limited now as one of the buses I use is on diversion. Correct bus boarded, and a kind lady offered me her seat.

Home, exhausted.

The attempts to make the Olympics easy to navigate and accessible mean that regular travellers may find extended journeys that are less accessible than usual. I hope that they take away some of the lessons though which would improve the tube which to me is mostly a 'no go'.