#ChallengeMS

Every September the MS Society in the UK has a fundraising campaign to raise money for research. This is an important and worthy undertaking - there is no cure for MS and a slowly expanding roster of disease modifying drugs.

You can read about my #ChallengeMS on my JustGiving page; if you can spare a small donation then it would be much appreciated by the MS Society and people with MS.

Toilet talk

Let's face it. Nobody really feels comfortable talking about their bladder or bowels. It's something that you have to get use to when you have MS. A routine question at the end of an appointment with the Neuro or MS Nurse is "bladder, bowels?".

Mine are irritatingly unpredictable. My bladder (compliment from urologist - you have a very large bladder) either runs all day without disturbing me or requires me to go to the toilet every half hour. I've tried to train it with alarms going off at work, but that hasn't quite done the trick.

My bowel is the same, but on a larger and longer scale. Either I seem to have constipation for days at a time or I have to go a few times. Every so often (touch wood it is very rare) I have what can only be called an explosion. When you have very little nerve action or muscle control below the waist it is sometimes hard to tell which message is trying to reach your brain and how urgently.

What feels like trapped wind or a vague bladder urge turns out to be something rather more urgent and messy. This has only ever happened to me at home, until today. Today it happened at work in the afternoon. Too much information coming up, feel free to stop reading if you don't need to know - but alternatively if you have some similar problems, keep reading so that you know you aren't alone.

I nearly reached the ladies in time. Really nearly. Ever changed a nappy? You get the picture. I cleaned up with the cheap nasty toilet roll our building supplies, and then again and some more. Knickers went in the sanitary bin wrapped in half a toilet roll... and I had to 'go commando' (as Joey from "Friends") would put it. I'm going to have to take a leaf out of Allison's book (played by Ally Sheady in the "Breakfast Club") and carry some underwear in my bag!

After 45 minutes (some cleaning up, a little "what do I do now?" and teeny bit of hysteria) one of my colleagues appeared to make sure I wasn't trapped in the lift; or given occasional propensity to tip over perhaps make sure I hadn't fallen over and hit my head.

I'm seeing the Nurse tomorrow by happy coincidence, but from recollection there is not a great deal to do for these here and there problems except be prepare, hope, and always keep a sense of humour. Yes, it was horrible and messy, and a little bit embarrassing (even explaining obliquely to my colleague why I'd been in the ladies for so long). It needs to be shared, because it isn't that unusual for people with MS and you aren't alone if it has happened to you.

 

Accessible London?

Ever since the 2012 Olympics Transport for London have been proud of their accessible transport system.

Apparently about once a year (see previous post here) I am moved by my experiences to share them.

My husband and I have been spending a fortnight travelling about London (re-living our honeymoon) and for the most part using public transport.

The day starts, always with a bus; four routes run past the top of our street giving access to trains, tubes and other bus routes.

The bus is where the problem invariably starts. Day trips in the Summer mean taking the Wheelie-Walker; too hot for Husband to push me in the wheelchair (also access not guaranteed) and too far for me to make my way around on crutches.

On the buses there is an area either labelled 'Priority Wheelchair Area' or asking buggy users to give way to wheelchairs. This is where the first problem comes in; the Walker isn't a wheelchair. When two buggies are taking up the space then there is little to no chance of the owners offering to make space. I have several times this fortnight blocked the aisle because there was no room for the Walker and fellow travelers have needed to climb over/around the Walker. On occasion if the Walker and I have been one of the first two occupants of the space a buggy has been refused access, and I have been allowed to block the bus and never refused access. These are best case scenarios. On one journey there was no space for the Walker and the driver had to ask the passengers if one of them would give me a seat. I've had to take seats further away because bags are taking an accessible seat, my husband has had to pick up the Walker to put it in the 'inside' space blocked by the pole. Because I'm not in a wheelchair and if you don't see me walking, I don't look disabled; so  the assumption is that I can manage. This fortnight travelling with my husband has been blissful; an extra pair of hands instead of trying to manage the thing by myself.

It doesn't end with buses though. Once you get to the station you have to get to the train or tube. The Underground gets more accessible towards the outer zones; zone 1 you mostly need a co-conspirator to help you by carrying the Walker up and down steps or escalators. Even when there are lifts my bug-bear is people using them who don't need to. Husband is claustrophobic and avoids lifts whenever possible, and meets me at platform or ticket office level. Several journeys have been delayed because the amount of people in the lift precluded me and the Walker. I don't mind waiting because there are three buggies filling the lift, but I do mind when the rest of the family who could use the escalator are just tagging along and taking up space.

So we've got as far as the tube or train. Husband helps me on and off with the Walker; when I travel alone if I'm lucky some kind passerby will help me; more common on the train as there are bigger gaps/steps and they are worried that my ineptitude will delay the journey. A lot of the trains and tubes aren't in the least friendly for wheelchairs and/or Walkers. South Eastern trains on our line are inexplicable, I have only found a wheelchair space on a handful of occasions. Tubes aren't too bad as you can use the standing areas pretty safely for the Walker, and hopefully get a seat next to it.

Ever since I broke one of the brakes manhandling it on a bus the other day it has been a bit inclined to 'wander' off on moving transport; this at least does soon encourage people to offer me the seat nearest to it to keep an eye on it.

The accessibility doesn't end with transport though. Just because there is a lift that doesn't make somewhere accessible. Whether you (or someone else) is propelling a wheelchair or you are utilising another kind of walking aid (Walker or crutches) it isn't just about vertical transportation; there is also the question of horizontal transport. Getting up and down is worth nothing if you then have to trek miles at another level.

So here's a few etiquette pointers for travelers sharing their journey with disabled travelers.

Wheelchairs, of course, need the most assistance. A Wheelie-walker is almost the same as a wheelchair though; the user just doesn't sit in it. Walker users can't walk without them; if they are like mine with a seat, they can't walk very far with them. Yes, they do fold (slightly) but so do buggies. Buggies are mostly pushed by fairly young, able bodied people. When I was a child my mother managed, with two children under five, to fold a double buggy on a bus and deal with two children and shopping. Deal with the pantechnicon monstrosities. If the user won't fold them to make access, don't let them on or ask them to get off. Priority for disabled users of all types (including wheelchairs).

Offer your seat to disabled people, please. No matter how long and hard your day has been I'm going to lay money you are more able to stand on a moving vehicle than a disabled person.

Using the lift; make way for people who can't take the escalator or stairs.

Using the disabled exits at trains and tubes; don't if you don't need to. If you need to talk to the staff member standing by the gate, move out of the way to let people through. Wheelchairs and Walkers are not the easiest things to maneuver without dodging suitcases and crowds.

I think that in addition to the 'Baby on Board' badges available for pregnant women there should be badges for disabled travelers (especially those with less obvious disabilities).

Once we're out of the transport system we aren't out of the woods.  From trekking from the wheelchair hire to the place to store the buggy at London Zoo to areas with no accessibility (and I include the tunnels between the two sides in that). From trying to find get a wheelchair under a restaurant table to finding somewhere to put the Walker (taking it away to the buggy-store isn't ideal - what if I need it to visit the facilities or even worse, get out in an emergency situation).

It doesn't take much to accommodate disabled people, I focus on walking because that is where my problem lies, but it isn't any more difficult to help out anyone; just a little planning, a little thought and consideration.

Sleep and MS

I have a lot of problems with sleep. I never used to. It has all been since MS and I became acquainted.

First problem is that all my night time tablets are supposed to make me sleepy. They do about 90% of the time. I think I'm developing tolerance as that 10% I can't sleep at all. When I do fall into a chemical sleep it happens within about ten to twenty minutes... but it does not often last until dawn.

Next problem that MS has introduced into my somnoulent life; because I find it hard to move I cannot turn in bed unaided (I can't get out of bed without those bars either). This means that however I am lying when I fall asleep is how I wake up. I usually wake in the night because lying in one position gives you cramps and spasms - mostly in my back,  but sometimes my arms and legs join in for fun.

I take five tablets at night (four to combat spacisity and so forth amend one to stop prurient itching). I take two tablets in the day (breakfast and lunch). These are essential. I suffer (as do a lot of people) with crippling fatigue, but this is augmented by horrendous brain fog and daytime sleepiness (yes, even after a good night's sleep). Without Modafifnil I'm inclined to doze off (it has nearly happened at work before the tablets). The trouble is (like a gremlin) no Modafifnil after midday as it will effect your sleep pattern. It does anyway. At night the daytime wakefulness tablets do battle with the night time sleepiness tablets!

Last, but not least, naps. Most people with auto-immune disorders discover that they can't do it all. You gave to use energy wisely. It's a theory that is sometimes hard to practice. There are days when I just do stuff (because I need to, because I want to). Then I come home and sleep. There are the four days I don't work where some time is nearly always spent paying for the rest of the week.

I like sleeping. Ideally I like eight to ten hours, at night. It has become a fickle friend these days I find. 

Hot Baths

As it is Monday and I don't work on Monday I decided to indulge in a hot bath. With MS it is an indulgence. I adore hot baths, hot enough that a sleigh steam should be rising. Long hot baths. Long enough to read a book and skin to wrinkle.

Alas hot baths are natural enemies of MS (my MS anyway). The heat is sapping, exhausting... baths are nowhere near as long as they once were... if for no other reason than recovery time now has to be built in. Which is where I am now, lying on the bed waiting for strength to return to my limbs and my vision to clear down.

The meaning of accessible

Last Summer, when London was hosting the Olympics, transport and accessibility to transport in the capital was a hot topic. A fair bit of work was done on the Underground network (especially at stations close to venues) to make it more accessible.

Because I get driven to work, I had lost track somewhat of public transport, until I started working 3 days a week and had more time to get out and about. 

Here's the thing. Whilst the network may be technically accessible it isn't necessarily practically accessible - this is just some tales from my corner of London.

Buses

Buses are great. They stop all over the place; mostly with shelters that have benches to sit on whilst you wait. If you are in the wheelchair there is a special blue button on the outside of the bus to alert the driver to put the ramp down and the same inside when you want to get off. Even if you're using crutches most of the buses have the ability to 'kneel' so that they are at kerb height, and other users will generally offer a seat to allow you to sit. The trouble comes (as it often does) with the wheelie-walker. Mine is four wheeled, with a seat and a back bar. It isn't a wheelchair though, you can't push someone around whilst they sit on it. It isn't a mobile bus seat either, the breaks will hold it in place; but now with the extra weight of a person.

So, you are waiting for the bus (assuming that the bus hasn't driven off, because why would someone with obvious walking difficulties be approaching a bus stop at speed and waving). The bus arrives and hopefully kneels or a friendly bystander helps you get the walker on the bus. Assuming that it isn't one of the 25% where the poles and seats make it to narrow to access the wheelchair space from the front you make your way to that area. All going well you park up and sit down before the bus moves off.

But wait, the space isn't empty; there is a buggy in the way. Best outcome the buggy owner will try and shuffle so you can park up. Worst outcome they sit and stare at you and wait for you to try and fold/manhandle the walker into the far spot (obviously the buggy must sit right next to the owner. The fact that you clearly aren't able bodied and the bus has started moving is no reason for the buggy owner to exert themselves.

Worst case scenario, two buggies are taking the entire space. You aren't a wheelchair, so why should anyone try and fold the buggy; they were there first, after all. Again the fact that they are able bodied and you aren't is no reason that you shouldn't try and fold/move the buggy... even if the bus is moving off.

Even if all goes well, you may find by arrival that the walker is boxed in. Here we go again.

These are nowhere near isolated incidents. I'm a big bus user (4 routes pass the top of my street) and if I'm going out for more than a brief trip I always take the walker. I think that about 90% of journeys see me encountering some sort of problems.

Trains

Stations are easy to get to, there is usually a bus stop right outside. Given the above I'm quite often losing patience by the time I reach the station having dealt with the bus crowd. Here is what to expect from my local railway (SouthEastern).

Charlton station is reasonably accessible. If you are arriving from the London direction there is a gentle slope which will deposit you opposite the bus stop; although if I'm going home, unless I want to jay-walk I then have to walk up the hill to the crossing and back down again. After a long day out this is often the final straw! If you are going towards London there is a lift down to the platform. Providing it is working, two occasions in the last six months I have found it out of order. This means you  have to leave the station and walk down the hill of Delafield Road to gain level access through the car park.

Woolwich Arsenal station is proudly accessible - they should try it with weights tied to their legs and see how it feels. The signs tell you that from the footbridge through the gates there are 27 steps to platform level. I asked the staff where the lift was, and was directed to the adjacent DLR. Out of the station, down the ramp, into the DLR and then a good old walk to the lift. There is a second footbridge you see. No problem now, lift down to station level (we'll ignore the five minutes walk to get there).

Greenwich station, depends where you are headed. First bear in mind it is nowhere near the town centre. If you want to go there then get the DLR to Cutty Sark. Arriving from Charlton/Woolwich there is a level exit. Anything else you need to get to the DLR where the lifts are; 5 minutes walk back up the street (this includes getting to the opposite platform for a return journey).

Lewisham station, don't get me started. Impossible. No directions, confused staff; up and down hills and ended up dropping the walker down a short flight of steps to get to the lift level as I'd lost the will to wander around any further.

The other problem with trains is disparity of access heights and gaps between platform and train. You really have to rely on the kindness of strangers (which seems to abound on mainline rail) to help you on and off with the walker.

I have never taken the wheelchair on the train, and I can't remember the last time I went with crutches either.

Tube

So proudly accessible with its little wheelchair logos on the stations. Have you ever noticed though those little logos come in two colours - white means step free access from platform to street (fine for crutches and the walker) and blue is step free access from train to platform (pretty essential for a wheelchair). The first time I took the wheelchair on the tube we started at North Greenwich (blue logo) but there was actually about an inch difference (upwards) in level going to Wembley Park (white logo) the train is about six inches below the platform. Since then alterations have been made so if you get on in the right carriage there is level access. The labels from the Olympics at the new stations with platform edge doors have been replaced with permanent signs.

How about getting out though? The walker (and actually worse the crutches) and I have had reason to leave at Green Park. There are lifts... but they aren't anywhere near each other.Walking and walking. On one occasion on the way back to kindly station staff escorted me as they were so worried that I looked so tired I might fall down in the foot tunnels.

So, what have we learned. Lifts are all very nice; so are designated spaces and signs. But if people won't yield the space or help, if you have to walk for five or ten minutes to the lift... well that isn't accessible. If you are exhausted just from using the transport, that isn't accessible. Don't get me wrong, it's better than it was, but it isn't the solution. And I'm willing to bet, I live in London; I've probably got it better than most. 

Another relapse

Relapses suck. My particular brand are very trying. The worst ones afflict me simultaneously with extreme vertigo and upper and lower limb weakness. This means that until trial and error find the drug (if there is one) that will abate the vertigo being upright is downright unpleasant (and has on occasion led to vomiting). The limb weakness means that I can't walk anywhere (helped since the first such attack by the addition of the wheelchair and wheelie-walker to my life), I can't really use my arms (so thankful for Kindle and iThings; I mostly watch TV and sleep.

The net effect of this is, I certainly get enough rest (I vie with the cat for who sleeps the most). The less useful side effect is that I slowly stultify with boredom.

Since my first bed-bound relapse five years ago I now have additional worries. I only work part-time, so I don't make as much, and our contracts now cut our wages in half after 0sick days in the year. Every day stuck in bed is money down the drain... And due to the reasons above I get a lot of time to dwell on it!

Staying positive, the drug they gave me for the vertigo works (first choice lucky) and I am feeling better than I did two and a half weeks ago.

It hasn't helped that during the same time I also had to have surgery on both toes and two fillings. At least that is all out of the way... hopefully the enforced bed-rest is helping my toes heal quicker.