Any Tips Please?

I’ve been having a bit of a tough time recently. I’ve had some nasty falls, and a lot of viruses, infections etc. I know that may seem minor to some of you and I totally understand that, but I don’t normally hurt myself so much when I fall and I don’t normally catch everything going.

When it’s not going so good I find it difficult to not let the MS totally suffocate me. I can feel so overwhelmed by it and as if I’m getting lost in it. I live on my own which I don’t think helps but I wondered if anybody had any hints, tips, or suggestions to help keep it in perspective when the goings not so good? I’ve had RRMS for 11 years now and I’m pretty good at managing it but this is something that I really struggle with.

Thanks for taking the time to read this and I’ll be really grateful for any suggestions.

hi rosie

i would suggest meditation. its definetly not a quick fix but has greatly enhanced my ability to cope with lifes daily challenges-inc ms.

when asked how i am my honest reply is physically ****ed but i have never been stronger mentally.

maybe there is classes nearby to u?

take care,ellie x

Hi

I am sorry to hear this. I am sure others will have some ideas but I was wondering, would going to either your local MS Centre or MS Therapy Centre help? They can be quite helpful from the point of view of providing therapies e.g. reflexology, yoga, physio and social contact.

Hope life gets easier for you.

x

do you know what is causing your falls? is it drop foot?

if so, you should see a podiatrist. he/she might provide you with insoles. they are quite discreet and nobody would know you are wearing them.

drop foot caused my falls. some were wuite nasty and resulted in me having black eyes, burst nose, bruises etc.

but since getting insoles i havent had a fall.

good luck

carole x

ps i wear reebok easytone trainers now which encourage you to pick your feet up. other brands do similar trainers but reebok are reasonably priced.

Hiya Rosie.

I hope just coming on here and seeing in black and white that people care about helping you is a small way to helping you feel less alone and supported.

I usually stop myself from falling aswell, but the last time I did some serious damage to my knee which really messed life up,but luckily I don’t live alone.

I had a routine ms nurse visit while on crutches and she is sending OT in with a view to hand rails and a means of help getting on and off the loo.When my knee wouldn’t bend I was having to use the door frame. Make your own mental picture of that lark!!!

She classes all the aids etc as tools in the tool box to try and avoid as many falls as possible and to make life easier when the MonSter throws a curved ball at me.

Are you in the OT/physio system and ask for an assessment for anything that would help you maintain the independance you have?

If you have managed alone for so long have you sort of dropped out of the professional support system,and when did your gp do a thorough MOT of you?

Pip

Hi Rosie

Something that might help is mindfulness meditation. It has its roots in Buddhism, but you don’t have to have any religious/spiritual tendencies to engage with it. I’ve just taken part in an 8 week long study on it that was funded by the MS Society, and found it really helpful.

At its most basic, it simply involves noticing what’s going on right now - what our body’s are feeling, what we’re thinking/feeling, what we can hear or taste etc. Much of the time we’re rarely in the present moment - we’re not paying attention to what we’re doing right now, instead our minds are wandering off, thinking about the past or the future, or wanting what we’re feeling to change. So a typical mindfulness meditation would be a body scan, where you scan your body from head to toe and noticing whatever the different parts are feeling, and try & let go of the desire to change any of the feelings. It can be tricky to get the hang of, but with practise it can get easier. And strangely, it can help with pain management. It sounds counter-intuitive - I would have thought that noticing the pain in my leg, exploring what it feels like, without judging it, wishing it was different or doing anything about it, would be torture. But although initially it can be, I find the pain lessens and passes quicker. Part of it is that it can be easy to say ‘I am in pain’, but actually that’s not true. In reality, only a tiny bit of my leg is in pain, and it’s not even in constant pain - it comes and goes, and the rest of my body is feeling lots of other things. It’s almost like zooming out of a map - it somehow removes me from it and makes the pain smaller.

And similarly with noticing my thoughts & feelings, I feel removed from any worries or anxieties I have, and I feel more in control. An analogy I had for it when I was doing the course, is that when I’m feeling stressed or anxious it’s like I’m on a ship during a storm, being tossed about, and I’m feeling seasick as a result. But by noticing the thoughts I’m having and naming them (e.g. I’m feeling worried about the effects of this infection, I’m feeling angry about being ill etc), it somehow removes me from the ship. I can (metaphorically) see the ship being tossed about by the worries etc, but I’m now no longer on it in the same way, and so I don’t feel seasick. Something to note with doing the meditations is that if I was to start one wanting to feel less pain or more calm, I probably wouldn’t - the aim is to simply notice and let go of the desire to change.

I’ve no idea if that makes any sense, but I’d highly recommend it, and (if you do) to stick at it for a while. One website you could try is called ‘Get Some Headspace’ - google it and you’ll find it. They have a free ‘Take Ten’ programme, which is ten meditations to use. If you like it you can pay to unlock more meditations, but if you sign up to it you can re-use the free ones as many times as you want.

Hope that helps - if you have any questions, give me a pm.

Dan

Hi, you`ve had some good replies to your post.

I just want to add my voice by saying that it would be a good idea to ask for an assessment from an OT.

I have and still am,using this service to make me safer at home.

luv Pollx

dan - i was at my ms therapy centre today and the dates are through for the mindfulness and meditation course. its £50 for the course and i think this is a very reasonable price.

i’d enquired at the buddhist centre but it was too expensive so luckily our centre stepped in.

looking forward to it starting

carole x