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Not in control

Nasty episode last December - recovered - now repeat of problems I had over Christmas. Heavy legs - sensory problems etc. and feeling mega c**p.

My question is - was there anything I could have done between Christmas and now to prevent this latest episode?

Have we any control at all over our m.s?

Can sympathise krackowian. Came off Plegridy and on week 2 of Tecfidera. Feeling great and no changes. Then yesterday, I was dragging my foot as I was shopping, using my crutch as usual. About an hour later. I didn’t think I was going to be able to make UI back to my car. I was hardly able to move my leg. It was frightening and upsetting as I was on my own. I also had time commitments as u had to collect grandchild from school. I was considering asking someone to help me cross the road to my car as I was afraid I’d fall halfway across! I did it but was upset. Later yesterday evening, I was right as ninepence. No numbness, no foot drop. ??? No, I don’t believe we have any control over our ms. :-/

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No I don’t think we have any control over it either. Yes I can try to ‘help’ myself… not overdoing things, taking my cocktail of meds, doing my stretches etc blah yawn… you know the drill. But regardless, ms just keeps on taking bits of me. It’s relentless, it’s gona do what it wants regardless of what we do. Duno who but someone once said on here - you fight it and it just fights you back, but harder. How true that is. Sorry you’re having it rough just now man

No I don’t think we do have any control over this monster. I do my exercises every day and it hasn’t stopped everything getting weaker. The latest being my arm and hand. Doesn’t matter how much sleep I get I still feel crap. Woke up at 8 this morning and said oh good I’ll have another half hour of sleep. Heard hubby muttering that’s all you ever do. Not sure if he had other things n mind but he was out of luck.

Maybe by changing your diet and doing exercises makes you think you are in control a bit. I think you are just going to have to ride this relapse out. Hopefully won’t be for much longer.

Libertine, that’s very true.

Mags xx

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Well, had my appointment with physio today. Writing up a my profile and assessing my needs. On hearing my recent walking issues, she is referring me to occupational therapy to see if a wheelchair might be beneficial. Meanwhile, I am now the owner of a set of wheels. The three wheeled walker. I’m actually feeling very defeated and tearful, even. How did you people feel when you accepted that you needed mechanical aids, as such?

Today I had a few things to do in town. I managed okay with my crutch as normal. That three wheeled walking aid sat in the back of my car, like a damned Dalek or something, just smirking at me. I haven’t even touched it. Husband “played” about with it yesterday when it came home in my car with me, as in taking the shrink-wrap off the pristine wheels etc then put it back in the car for me. I really can’t bring myself to use it…yet. I suppose in my head, I associate it with frail little old ladies, bent forward, shuffling along. I can’t believe how quickly this crap situation has occurred. This time last year I was travelling solo in the Canary Islands. Strong, capable, confident, outgoing. I don’t feel I am Me anymore even though my sensible self tells me of course I am, just with added extras. :frowning:

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Poppy, what you’ve said there really resonates with me, it really does. My problems are more cognitive than physical, and I really don’t feel like me any more, because I’ve lost a lot of what was in my head that made me myself.

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For me it’s lack of stamina in walking, and only very occasionally, foot drop. I can’t even explain why I don’t feel like me! These days, it seems every time I leave the house, I kind of have to pre think what I will be doing. Where will I park, which is the nearest blue badge parking space to where I’m going, will I be able to just “pop in” there or had I better take my crutch? I seem to end up being distracted by my own conversation going on inside my head!.."Oh no, pins and needles in my right foot. Oh no, foot gone numb/freeing cold. Hmm, should I go and have a coffee and a sit down and then I might be fine, or should I call it a day and get back home?

Nope, something has definitely changed in me, and I don’t like this new me very much. :-/

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I suspect it’s to do with losing your freedom and independence that is hampering you. You need to think about the how, where and what much more because you are physically challenged. That leads you to overthink how you will get to where you’re going, where you’ll park, the distance you’ll be faced with etc.

You may find this gets a bit better as you start to accept the new reality of your necessary use of a walker to keep your balance and safety.

But, it’s a big thing to move from crutches to walker. I didn’t really do it. I went from crutches to wheelchair as I had a drastic relapse that moved me on. I’d already bought a walker but hadn’t had to use it out of the house.

Perhaps you could think about that. The walker may offer you the ability to retain your independence. Yes, it makes you feel more visibly disabled, but you’re still able to walk and lead an independent life.

Just my thoughts, I wish I could walk outside the house using whatever devise I needed to make that possible.

Sue

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Nail on head I think. My problem is fully accepting the whole diagnosis thing still.

And I am humbled Sue when I see people in wheelchairs, managing perfectly well and still smiling.

I do remind myself that I am lucky I am still able to walk, still able to get out and about, still independent.

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Poppy6488

​it is tough to adjust to each new “normal” It amazes me how when the goalposts shift we can usually adapt. For me once I got over the mental hurdle of needing to use a stick it was much easier to accept having to use a walker when I need to. I even have banter with the older people who are faster than me and my rollator. I can cope with the constant planning or strategising if it means I can still get out.

I am not the person I was 28 years ago but who is? I have lost a lot but gained some additional skills too.

Good luck and all the best

Mick

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Hey.

I think that my supplement regime really helps. Diagnosed three and a half years ago, probably been active for nine.

Not on any medication. I have an eds of 2.5 - 3.

I take vit b12 (2000 mcg), vit d3 10,000 iu, Magnessium citrate, Calcium, acidophilus, omega 3 1g, cinnamon (3 * 1/2 tspns) and st johns wort.

When I start feeling worse I take additional cinnamon. I’m pretty sure it helps and I know for sure that vit b12 helps.

I relapse once a year when I have a cold. I was quite ill from June to November last year but I am feeling well again. I am going start on Tecfidera quite soon which I am quite happy about. I was too depressed at the end of last year to start it.

I hope that you feel better soon.

Adrian.

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Thanks for the kind posts guys. Most days are good and I’m not a gloomy outlook kind of person normally. I’m traveling up country tomorrow with hubby to attend a family wedding Friday. Staying at a guesthouse with stairs…hmm, could be interesting. We live in a tiny cottage, no stairs. Will be meeting people who won’t yet have know about my ms, and will have to go through the, “oh what have you done?!” when I limp in with my crutch. Still, I’ll be dolled up to the nines, and will smile through my gorgeous pink lipstick all day! :slight_smile:

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Good for you. Have a fun day. :slight_smile:

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