Madeline Simon (MS) – Room with a view

My room is now nearly complete, however I am still waiting for the blind I’m having made and a headboard that I ordered via the Internet. I am so pleased with it all.

Unfortunately I didn’t do the painting etc as fatigue hit and I’ve got some lovely bruises on my legs. I won’t be wearing skirts for a while and a few siestas in the afternoons have been needed. So I am keeping my agenda quite sparse again this week and concentrating on building up my strength and muscles.

Interestingly I received some documentation from the MS society and one article was about the trial they did on exercise with a secondary progressive MS patient, not surprisingly it was hugely beneficial. It cost them nearly £150k … I would have told them that for nothing! But I suppose they needed hard evidence. So guess what is on my agenda, exercise! It’s lucky I enjoy it plus you look good and feel better for doing it. So POWERbreathe, Pilates, possibly swimming…here I come!

Madeline Simon (MS) – Decorator’s are in the house

Amazingly I found a decorator and on Monday he came to check the job out, initially saying he was booked out until the autumn. However, after a bit of chatting he said he would try and fit me in and to my surprise he rang Wednesday evening to say he could fit me in on Friday and Monday. So far it is looking fantastic, so by mid week I should get all my boxes organised and the furniture back in.

I’m in a bit of an organising and tidying mood and got the carpet cleaners in and they did a brilliant job. Previously I would have done it myself but over these last 2 years my energy levels have not been up to it. Despite the POWERbreathe!

The only things I have got firmly booked in the diary for this week are my usual POWERbreathe, Pilates and physio sessions, but no doubt I will add to it – swimming, sorting out the room, seeing to financial matters, writing letters, and my twice daily walks etc.

Madeline Simon (MS) Week 13 – Phew only a scare

Since my scare, I am definitely pacing myself better. My exercise regime has been more of the same but I didn’t get to go swimming. I thought that would be a step too far but it is definitely on the agenda for this week coming.

I have been going through all those boxes in the spare room and even though I haven’t been so ruthless, I have cut the box count by 15% – not bad really. I now need to find a decorator to give the room a fresh look and put the gorgeous wallpaper that I bought on a screen that I made out of MDF, to hide the boxes behind.

I’m usually very practical myself and would have done the decoration myself in previous years. But, the MS I have has damaged my cerebellum (the control box in your brain), hence, I get cerebella tremor. This makes my coordination not good and sometimes my hands just erratically jerk. So it’s best to avoid those jobs that need a steady hand. Cooking and handling a knife is also best to be avoided. My food is cut up for me and if I go to restaurants I tend to choose easy to manage food and always eat with a spoon.

Madeline Simon (MS) Week 12 – Turning the corner

I have a bit of a confession to make… Last week in Cambridge my stability just went. I had minimal muscle tone in my hips and legs and my balance was all over the place. I didn’t want to say anything last week because I didn’t want to spoil the great weekend we had, plus, I do like to look on the positive side of things and this would only spoil it.  I was also a tad ashamed with myself because I do pride myself on my exercises and fitness. However, over the last month I have been overdoing things – for me – and I know I have had to cut down on my exercise so I could do everything throughout the day. The biggest scare was how quickly I lost muscle tone.

The good news is I have turned the corner and am rebuilding again. My physio knows me too well and knows I go at things full blast and in the process exhaust myself. So I have been walking about 250m down a slight incline and back up again twice a day, concentrating on firing up my muscles in doing so i.e. squeezing buttocks and pulling up pelvic floor. Doing this makes my posture look great! I have also been doing my floor exercises for about 10mins every night and my Pilates every week.

So more of the same this week and I may go for a swim as well.

The big lesson that I have taken from this, is never let one’s exercises take 2nd place. They are so fundamental and crucial to one’s mobility and functioning.

Madeline Simon (MS) Week 11 – Lunch with Jamie and a makeover

20th June 2011

By mid-week I started to get a lot more energy and hit the boxes in my dressing room/spare room that were from the house I sold when my MS got so bad that I had to move in with my parents. I have done this before but need to be more ruthless this time, plus I’m giving the room a bit of a makeover. I have given myself until August as a deadline so as not to put any pressure on myself. I do get excited about it though and can’t wait ‘til it’s finished.

This weekend I had my annual long weekend away with one of my sisters. It was Cambridge this year which was lovely, plus we had a lunch at Jamie Oliver’s. I would fully recommend it, not only for the delicious food but it was very decently priced.

I took my POWERbreathe with me and in the morning we also did a Pilates session. We felt good for doing it.