Cooking with gas!

Last week I bought a 'perching stool' for the kitchen. This is why disabled people need the Disabled Living Allowance. These things aren't cheap. What it means though is that I can cook again.

Not being able to stand long unsupported means you can't stand at a worktop or a hob to chop or cook. You can't stand at a sink to wash. I had a wooden stool but it was too high, and because it had no back I was never sure if I was safely on the stool or about to fall off.

Can cats use it too, eggs up there!

Folds away for small kitchens

In action

Just the right solution

Me - cooking again

Curry for dinner

Sadly the much anticipated bath-stool, despite careful measurement, is too big for the bath and will have to go back. I will not be defeated. All the kitchen standing problems apply double for the shower... and because of stupid stud wall no rails can go in the bath / shower.

More steroids... and a rant

As usual the 5 day intensive course of the evil blue tablets did little other than give me chronic insomnia, put me in a foul mood, make everything taste bad and make me smell. Thanks to the Better-Half for suffering me.

Today we move to the endless three week tapering course. Not so bad tasting and not so insomnia provoking my GP assures me... although may lead to excessive euphoria.

I am now taking so many tablets I had to buy a new organiser! This morning there will be 18 (5 types), at lunch 4 (2 types), in the afternoon just 1, and at bed time another 5 (3 types). That is 26 tablets of 7 varieties... shake me, I rattle.

I'm hopeful as I write this that this us the end of insomnia. I'm hopeful the steroids are working on bits I didn't know were wrong, so even if I don't notice an improvement there is one. I'm hopeful that no bad effect will come from the Avonex suspension. I'm hopeful this is the longest relapse ever and remission is just around the corner.

If not I have been inspired by the Paralympians and my many Twitter friends - and I will redouble my armchair activist efforts to help those who are struggling (with me) to make our voices heard.

My MS Week

This Wednesday I went to see my Neuro. Generally these days this happens once a year, so I hadn't seen him (apart from passing in corridors) for a year. It was a warm sunny day, and I was almost late, lucky he was running late too. The heat and the extra sitting down meant when I was called I need help to get out of the chair and shuffle into his office. 

His first question 'How long have you been like this'. To be honest, I wasn't sure. To me it has been a slow decline. When he asked if I had been treated with steroids I told him as much; apart from my left hand suddenly joining my right hand in numbness and my on-off love/hate relationship with bladder and bowels the walking as been a slow descent into Ataxia hell. That and the numb/pain thing (oddly called anaesthesia dolorosa). 

His immediate (and predictable) reaction was to suggest Tysabri or Fingolymod. Old and tired conversations. I refuse to take these drugs until they have a little more history behind them and a better safety record.

His next concern was that my course of relapsing/remitting MS has moved to a course of secondary progressive MS. Despite the slow relapse free decline that wasn't a thought that had really crossed my mind. It is hard to tell if this is what has happened. First course of action, suspending the Avonex. I guess we find out if it was actually working or not. Next course of action, a course of one week (horrid blue) steroids. If nothing happens then I get a three week tapering course. If no improvement occurs this leads to the possibility that we have moved to secondary progressive. It's all a bit up in the air, it's all a bit 'we don't know'.

I sat in the corridor and waited for the buggy to go to the pharmacy. Wept a little weep and then looked up the Secondary Progressive course and found out that it might not be as bad as all that.

And an online friend gave me the following excellent words:

People with MS can live in fear of the word ‘progression’. Being told they have SPMS can be just as big a shock as the initial diagnosis of MS was.

They can feel they have a completely new disease, and it’s no longer treatable. It can feel like the end of the world for some.

But in reality, this is not the case. As a nurse, I reassure them that SPMS is just a name for one pattern of the disease – it doesn’t change the fact that their symptoms will still be treated and it doesn’t signal a sudden onset of disabling symptoms. They’ve still got the same disease, but perhaps very slowly changing.

Of course people need to know what type of MS they have, but we need to tell them in a way that’s not just clinical but takes account of their fears and concerns.

In the afternoon I had physio. This was better. We looked for a leg brace to help keep my left toe up so I stop tripping. I also am getting new crutches with easier to hold handles which will help me with my numb and painful hands.

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'.

Me and my... bladder!

This afternoon bought a visit to the Continence Clinic, along with the bladder diary I kept last weekend. Bladder difficulties (and infections) are fairly common-place in MS, so the only surprise is that it has taken me this long to get there!

The two nurses were lovely, and put me right at my ease - let's face it, nobody likes talking about their bladder and bowel movements! We went over my diary and I was complimented (?) on my bladder capacity - whatever the problems are, it isn't a small bladder. Did I need to go now, I was asked. A bit I responded. So they did an ultrasound of my bladder. Empty. Mixed messages getting to my brain it would appear, plus ca change.

I was sent away with an appointment for three months time, a list of drinks that are 'bladder friendly' and those that are not, an instruction to resume my pelvic floor exercises and a recommendation to set the timer on my phone for three hourly intervals to ensure regular toilet trips. We're not in Kansas anymore Toto!

MS experiences this month

Everyone's experience with MS is unique. That being said, there are a lot of problems that many patients do have in common. Some of these have been right up there in my trials and tribulations list these last few weeks.

1) Fatigue. Read Christine Miserandino's 'Spoon Theory' if you haven't already. I have become increasingly aware of my limitations the last month or so. The lift at work breaks down and so I have to take the stairs; I need a cash-point on a site visit and have to walk to civilisation and back; I go shopping with a friend and my crutches only to find that Shopmobility are fresh out of wheelchairs. These things lay me out. Sometimes I am ready to crawl on my hands and knees as my legs (even with the crutches) can't cope. I never go out on a Friday without the wheelie-walker as I know I'll need to sit down every 20 feet. And when fatigue hits that is it, you're done; benched for the game. Resting provides a temporary respite but ultimately there is nothing you can do but struggle on until you can lie down and give in.

2) Brain Fog. You're in the middle of writing (or even worse talking) and the word is gone. Not 'tip-of-my-tongue' but gone. You can work around it (play verbal charades) or give up and change direction, and if you're writing come back to it later. The phrase 'umm' is looming large in my vocabulary these days. That is the tip of the iceberg. I forget entire conversations. I know they happened, I just can't remember what was said (so, so bad when it happens with your boss). Then there are the times when everything just takes longer - it is like stirring treacle; often I get fed up and give up... although again, not an option at work, just have to plough on.

3) Sensory abnormalities. I've lived with these nearly as long as I've had MS. My feet are so numb I can only tell if I'm wearing socks by looking (great for the cat who likes to bite and scratch feet) this extends most of the way up my legs. At the same time, oddly, the slightest touch (furniture, water in the shower) is agonising pain - even though I CAN'T FEEL! The same is true for my hands - small and intricate tasks (even typing) are a total chore; try going about life with a pair of rubber gloves on and you'll get the picture.

4) The uncomfortable (even taboo) subject of bladders and bowels. Whether hesitancy or urgency there seems to be some sort of problem. Not knowing that you need to go until it is too late, needing to go but the body refusing to co-operate. I've now been referred to a 'continence clinic' which means I'm keeping the strangest diary ever (and I've kept a few) of what goes in and out of my bladder. Yes, I have to pee into a measuring jug.

I share these things because I have found the biggest comfort with the peculiarities of MS is to know that you are not alone... no matter how strange, odd, or embarrassing - odds are someone, somewhere is going through just the same thing or has been there before.

I'll leave you with one of my favourite quotes from TV's "The West Wing" (if you've heard it before, bear with me):

This guy's walkin' down a street when he falls in a hole. The walls are so steep he can't get out. A doctor passes by and the guy shouts up, "Hey you! Can you help me out?" The doctor writes a prescription, throws it down in the hole, and moves on. Then a priest comes along and the guy shouts up, "Father, I'm down in this hole; can you help me out?" The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by. "Hey, Joe, it's me. Can ya help me out?" And the friend jumps in the hole. Our guy says, "Are ya stupid? Now we're both down here." The friend says, "Yeah, but I've been down here before and I know the way out".