Monday, 23 April 2012

MS and all kinds of trouble

MS and I haven't had been having a good time what with one thing and another.

The week before last I cam down with a bout of tonsillitis.That meant that I had to have my second course of antibiotics this year. Fortunately this infection wasn't so bad so I managed to keep on going and wasn't sent back to bed with a re-occurence of my MS symptoms.

Last Monday I had a routine appointment at the hospital to see my MS Nurse. This should have been a simple undertaking. The buses were on diversion but I had a plan. Bus to next stop along, cross road, get correct bus on its diversionary route, arrive hospital.

It all went wrong when I missed the bus as I was crossing the road and there wasn't another but for a quarter of an hour (by which time I'd be late). No problem, I thought, I'll walk - it only takes 15 minutes. Only 15 minutes for an able bodied person who walks unassisted. Lucky I had the wheelie-walker with me, so I was able to take regular rest-stops. I got quite hysterical at some points... when I discovered there were no temporary bus stops; when the officials directing traffic for the Olympic test event (that was diverting the buses) wouldn't let me cross the road and made me walk the long way round.

I arrived at the hospital and they gave me a glass of water before my appointment (I was only half an hour late). At the appointment we discussed the new oral drug that has just been approved by NICE - I've gone off the idea rather since I've read in the press of a number of deaths linked to it. My Nurse said they have more stringent tests, but only half of them were to do with heart problems. Until they find out what caused the other half I don't feel that I want try that one. So no new progress.

Lucky I was working from home so I got to have a nap before getting down to work. I also had physio in the afternoon, were I got some information about exercise schemes that I can participate in. Time to get fit.

Saturday I decided to go to the St George's Festival in Trafalgar Square. This worked out not too badly because I took the wheelie-walker with me again. It still is a bit of a nuisance to get on and off transport, but that is out-weighed by the 'having a seat' aspect.

Today was a particularly bad day - caused by human error. I took my morning tablets before I put my glasses on. Instead of taking two antibiotics I took two Clonazepam. These are the tablets I take at night before I go to bed which relax my muscles; I take one. I rang up the NHS Direct to make sure that I hadn't poisoned myself. No, happily was the answer. The problem was my muscles were like elastic (quite nice to get a relief from the spasticity) and I felt like I was stoned; my boss sent me home and I spent the rest of the day asleep. Feel much better now.

The rest of the week is looking like a series of taxi rides - my boss is double and triple booked so I have to go to several meetings. If I walk (from experience) my week will be shot as the fatigue will come and get me; taxis it is then.

I'm hoping to start my exercise regime this week. Beginners Tai Chi on Wednesday night and Music and Movement on Friday morning. I discovered on the ill-fated walk to the hospital which is half a mile that I really am horrendously unfit - so I'm going to get back into shape.

Thursday, 5 April 2012

A new freedom

A wheel-chair is an excellent way to get around when your legs don't work. I've never tried to get myself around without someone pushing me for any length of time... but the short periods I have experimented with prove that I need a little more arm strengthening exercise.

Crutches are an excellent way to get around too. The problem is that they still require input from your legs. After a distance (a not very long distance these days) my legs begin to give out. Aching, stiff and finally pain.

Enter my wheelie-walker. I can still walk supported (as with my crutches) but when I get tired and my legs give out I've got a seat right with me. On a bus, on a tube - or my favourite; when I take a walk and forget that I have to come back again.