Ouch!

The problem with winter is that it is cold and wet. The problem is that the grip is wearing out on my shoes. The problem is that I keep falling over. Once a week in the last two weeks. The first time I toppled off the kerb; it was wet and my shoes had only passable grip - the problem was The Stick is on my left and I fell to my right. Twisted my ankle and spent all weekend keeping the weight off.

The same thing happened this weekend... Friday, I wasn't really paying attention to my walking and slipped and fell - again The Stick is on my left and I fell to the right. Twisted my ankle (again) and had to buy an elastic bandage on my way to work. That helped and sitting down the rest of the day means it is only a bit stiff now.

In addition there has been a lot of random pain the last three weeks. Anywhere there is a muscle appears to be fair game. Hot water bottles soothe but don't cure; same for pain killers. Sleep and a large glass of wine appear to be the best solution!

I'm really looking forward to the cold weather. My internal thermostat is busted beyond belief. I seem to spend the whole time sweating and melting. I'm flinging open doors and windows all over the place. If this carries on once winter hits for real I will definitely have to take it to the Doctor.

Can you tell me where your disabled toilet is?

Disability comes in all shapes and sizes. Disabled people in wheel chairs, the ambulant disabled, those with vision difficulties, those with hearing difficulties... the lists are long and varied. The thing a lot of people do have in common though is the need for a toilet which is larger than the average cubicle in public buildings, often additional rails and support, and the need for the toilet not to be up several flights of stairs.

Personally I have difficulty walking, mostly because I have trouble with my balance. Stairs are therefore particularly hard for me (I also have creaky knees, which is just me getting older and nothing to do with the MS!). I also have trouble with my bladder... I couldn't live without my Tena Lady pads that's for sure.

On Friday I went out for lunch, it was a work affair - we went to a very smart restaurant in Soho. Towards the end of the meal I went off in search of the facilities. It wasn't a big place and it was immediately apparent that they weren't in the main restaurant room. The Gents was just off the bar near the coat-check. The Ladies was up a flight and a half of stairs, across and landing and down some more stairs.

After lunch we went to a nearby pub. Again it was a small place... again the Ladies were up a flight of stairs on the first floor.

This is not the first time I have had this problem in older establishments in central London. Because there is a requirement only to make 'reasonable adjustments' smaller and older buildings do not have a dedicated disabled toilet on the ground floor and the facilities are usually located upstairs or in a basement to maximise usable floor space. I have been to pubs where a member of the bar staff has guarded the door so that I can use the Gents on the ground floor, I have been on trips down service corridors to doors without locks... and when all else fails I have trudged up and down flights and flights of stairs. I am fortunate to be able to manage that, there are many who can't.

Busy makes me tired

Everything has been a bit busy the last six weeks or so. Ever since I came back from my holiday (and everybody else took theirs in turn) work hasn't stopped. It isn't that the construction industry has picked up lots - but maybe a few green shots are showing through. The result is that there is more work than I can fit into my three day week, and I end up doing ten and twelve hour days just to try and keep on top of things. This is all well and good, but it means that by the time I get home I'm too tired for anything much. Add to this my Monday and Friday job (which is essential to balance the books) and I don't get five minutes to myself in the week and then need to spend most of the weekend in bed recovering! The good news is, that apart from the fact that I have to remember my limits and not overdo things and wipe myself out, my MS has been stable the last couple of months. The various drugs continue to do their job and no relapses have occurred. Fingers crossed, touch wood, and all that.

This busy-ness means that I have sadly neglected the blogsphere and means I have been very derelict in posting this lovely award from Herrad. Herrad kept the original text from Celeste and so have I.

MOONLIGHT

Moonlight in this case represents the glorious brain-sharpening, mood-enhancing experience one feels when reading or seeing something inspirational in other blogs. Something that sets the tone for the rest of your day, puts a smile on your face, stimulates your work, or makes you feels awesome about life. It is not often one feels wonderful. But some days, some blogs do just that. I want to give “moonlights” to all the special blogs I encounter. There are no obligations attached to the recognition. But if you feel like it, you can pass it on to whoever has also given you that something special, what in Spanish they call “eso”, or “it”. Whatever “it” is that lifts your spirits and helps you to up your mental game.

MS Superstars

Thanks to the MS Superstars raising money at Run to the Beat Half Marathon today.

News - Fewer Injection Site Reactions In Patients Using AVONEX

I can echo this one from personal experience!

Fewer Injection Site Reactions In Patients Using AVONEX Versus Sub-cutaneous Interferon And Glatiramer Acetate For The Treatment Of Multiple Sclerosis

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Another trip to the Neuro

Last week I had another scheduled visit with my Neuro. A little swifter than normal as he had insisted on a quick follow up to make sure that the anti-depressants took effect. I was the first appointment of the day (which is always good as punctuality isn't his strong point!) and after losing his favourite pen and complaining about the coffee we got down to business.

We ran through the usual list of suspects to gauge the status/progress of my MS. A lot of these always seem a little too personal; especially when you are asked about bladder and bowels! These are things no-one likes to think about too much even more talk about... but problems in this area are a fact of life with MS for a lot of people. I've had trouble with my bladder for years, only in as much as it is a bit weak so I use the delightful 'light incontinence' pads (a little like panty liners). Problem solved. The last few weeks I've also had some bowel difficulty - mostly 'urgency'. MS or just some bug in my system? Time will tell. Too much information... perhaps?! That is MS.

We went through the rest of the status indicators - mood (better than before); memory and cognition (not so good, especially memory which is now beyond poor). He asked me about "this monster" (my poor stick!) and I told him that I had it with my all the time if I was out and about - especially as lately I have had several falls even with the stick. Oh the indignity. I was walking along Albermarle Street (Mayfair, dahling) when I toppled over and a kind lady helped me up. Again in Mayfair Place a couple of days later I tumbled, this time losing my glasses in the process (thank goodness they weren't broken).

The Neuro expressed concern that after so many years stability the disease appeared to be progressing - or perhaps relapsing. I told him that I have these little problems all the time on and off it just depends when I'm seeing him.

I was quite pleased as he dictated the letter that my EDSS (Expanded Disability Status Scale) Score had gone from 5 to 6. Pleased until I looked it up later and discovered that 0 is normal and the higher the score the worse the result.

I was discharged with an appointment for twelve months time and instructions to keep taking the anti-depressants until at least early winter. Best of all, as I only had bloods done when I saw the nurse a few months earlier I escaped without that horror this time (last time I passed out, it dulls my enthusiasm).

What Is Ataxia? What Causes Ataxia?

For the last couple of years Ataxia has been a constant and unchanging part of my life. It is what causes my balance problems and shaking hands (and by the looks of it my cold feet too!).

What Is Ataxia? What Causes Ataxia?

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