h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Last Monday (6th October) I woke up without any hip pain/discomfort for the first time in about 3 years. I picked up my orthotic insoles last Tuesday and have been using them ever since. (We had to go out and buy me a new pair of slippers so I could use the insoles round the house.) I know I was dubious about how much difference they'd make, but I've found that some discomfort creeps back if I don't use them. I did some time at a local National Trust property yesterday (16th) where I volunteer as a room guide. I didn't use my insoles and regretted it.

Today I went for a walk 'cos the weather's so nice right now, making sure I used my insoles. I went from home to the local cemetary, which is a lovely walk past fields. It took me roughly 30 minutes there and back, and I didn't need my walking stick all the time. The round trip is about 1.5 miles, so I was doing 3mph. It used to take me 15 minutes to get 2/3 of the way to the cemetary, leaning on a stick every step of the way. In fact, at my worst my walking speed was down to less than 1mph. Before MS I could do 4mph without really trying, but I'm happy to be able to do 3mph. After the exercise my pulse was over 130, close to my maximum after exercise, which shows how unfit I am now. Hubby tells me not to push things, but I'm even starting to think of line-dancing again!

I wish I could send everybody some of the positive energy I'm feeling right now. It's been so long since I could do anything like this. I'd love to celebrate right now, but I don't know what to do. I think I've done enough exercise for one day, so I'll celebrate by sitting outside with a good book and a cup of !

Glad to hear it, Dragon!

YAY! Very good to read Cheerful Dragon!

UPDATE on hubby

Finally some progress in therapy.
I am going to meet the therapist next month.
I have asked. Hubby accepted this time.
It seems to be a good time to go.

I have to say he is trying.
Some changes, slow. I think it may step up a bit.
I have more hope at least!

He is getting unstuck and coming back to reality, not AS much fear and negativity. He can listen and talk now about stuff (a little)that he had totally shut down on. Sometimes the pain is too much for him. He is begining to see reality is better. Both reality and the world he tried to make up became unpleasant.

***********

Terri there are grab bars that can be installed. They are not expensive if you have a handy person to install them. They need to be bolted to firm wood or metal.

Stress is the key- doing what you can about it.
Day at a time Terri

I hope you will be better off in Ireland.
I am happy you have achieved that dream.
Maybe there are more good ones to come.

Did you see that Cheerful Dragon is doing better?

Just when I was feeling better I get hit by another relapse. This one has me feeling weak and shaky, with occasional light-headed spells. I can't stand for more than about 10 minutes. Words come out wrong when I speak, and also when I type. (I nearly spelt 'one' as 'wan' just now, and 'weak' keeps coming out as 'week'!) My nice walk to the cemetary and back? Forget it. I can't even do a 10 minute walk to the shops, never mind 30+ minutes.

I bought myself a Wii Fit earlier this year and I was really enjoying the workouts. I haven't used it since the relapse started a month ago. Even something as simple as folding some clean laundry and taking it upstairs knocks me sideways for the rest of the day.

We're planning to go camping for two weeks in June. We picked the campsite because its one where I can spend all day sitting and admiring the view or reading. Today I found that sitting reading may not be an option. I felt so weak I had trouble holding the book.

Either I need cheering up or I need reminding that there are people worse off than I am. Over to anybody whose out there.

OK, nobody's posted here for 18 months. I need to 'talk', so I'm resurrecting the thread.

The improvement to my hips that I mentioned 2 years ago was temporary. The pain comes and goes. Some days I'm OK and I can walk around with the aid of a stick (and a few ibuprofen). Other days I need to use a wheelchair. My level of disability has increased, but it's not the MS that's doing it. That's a relief, in a way.

I had another relapse in April/May 2010. Not so weak and shaky as the last one, but still problems typing. Also problems concentrating, which isn't good when you're doing a course with the Open University and you need to get an assignment done.

The big news is that I've come off my medication (Betaferon injections on alternate days). I just got fed up with having to live my life around doing injections. I was thinking of stopping completely, but my MS nurse advised me to just take a 'holiday' from it. I was supposed to finish the stuff I already had, but about 6 weeks ago I thought ' it' and didn't take any more. It's too soon to tell if I'm going to have relapses more frequently, or if they're going to be any worse than the last two. The noticeable difference is in my mental state. I often felt low and several 'tests' indicated I was suffering from low-moderate depression. Depression is known to be a side-effect of Betaferon, but I didn't realise I was affected until I stopped taking it. In the early days, the difference could have been from relief at not having to take it any more. After 6 weeks, though, I'm sure the depression was caused by the medication.

I must have missed the resurrection of this thread, Cheerful Dragon. Good to hear that coming off the meds has reduced your depression. Not good that your level of disability has increased.

My hubby went to see a neurologist for the first time in 6 years last week, one of his almost parting comments was 'If I didn't know you had MS, I wouldn't be diagnosing you with it now' He did, however, send him for another MRI scan.

A's now wondering whether or not he can 'cover it up' too well The doc hasn't seen him toboganing down the stairs (without the metal tea-tray) and the pain he's in constantly. Sometimes I feel like throwing my hands up in the air, that was one of them.

Neuro's, eh! Sometimes I wonder if they know what they're talking about. At one visit to my neuro, he cast doubt on whether I'd really had any relapses because I'd recovered completely. I was taken aback at this. According to the MS Society website, confirmed by my MS nurse (bless her!), people with RRMS can recover completely from a relapse. It's only the progressive forms where there are noticeable continuing problems. I've asked if I could be transferred to a different neuro, but the one I've been seeing is the only one locally who can prescribe DMDs. So I'm stuck with him.

I'm sorry to hear about your hubby's problems. I've done the 'tobogganing down the stairs' a couple of times. Constant pain is something your GP should be able to do something about, though. It's also something your hubby could have mentioned to his neuro. There's information on MS and pain here: http://www.mssociety.org.uk/about_ms/symptoms/pain_and_sensory_symptoms/index.html The info may be useful when it comes to describing the pain to your GP, and it may help your hubby to get the best kind of pain relief.

I wonder that as well, the 'new guy' didn't even have his notes from the previous hospital and the whole thing was very rushed, I think he wanted his lunch.

He has 'nerve pain' and is already taking more Gabapentin than the recommended daily dose, he takes 6 800mg tabs a day. I had half of one a few months back when I had *serious* toothache - he had to scrape me off the ceiling

I guess I'm lucky. I've never had any pain associated with my MS. The worst pain was from my hips and I only had high-strength co-codamol for that (30mg codeine instead of the usual 8mg). Then a rheumatologist asked, "Co-codamol's just a pain-killer. Have you tried ibuprofen?" I hadn't then, but now I find it's OK for all but the worst days. I did have diclofenac tablets for a while, but they're not recommended for long-term use. (Neither is ibuprofen, but it's a lower strength NSAID, so I'm happy to keep taking it.)