Testing myself tomorrow

Everyday living
1

Tomorrow I’m going out shopping with my mum and sister, this is going to be a bit of a trial by fire for me as generally the only time I set foot outside is if I’m going to the hospital or some other appointment type thing. I can get around indoors pretty well, sometimes (though not at the moment) walking feels normal indoors, though not on the stairs, or if the phone rings while I’m in the kitchen and I attempt to hurry into the living room, lol, I think I probably look like I’ve got a pirate’s wooden leg at that time!

But this is going to be the first time since my MS caused me to not be able to work that I’ll have been out somewhere all day. Somewhere involving mainly moving about rather than somewhere where most of the time is spent sat. Though, having said that, one of the places Mum’s wanting to go is DFS, so I’ll def be up for some intensive “product testing” in there ;D

My mum’s doing the mum thing and worrying that I’m going to suddenly HAVE to stop and end up lying on the floor in Dunhelm or something. Hopefully that’s not likely to happen >< But I have found that my walking problems/fatigue issues can’t be predicted (is that the same for anyone else?), so yeah, tomorrow is uncharted territory for me. I’m fully intending to hold mum or Em’s arm in areas where there’s room, so I’ll be able to go much further before starting to physically struggle by doing that, but who knows when physical/mental fatigue might decide it’s time to say hi.

Not too long ago I roped my mum into going to Aldi with me. This was not too long before the relapse that I’m currently coming out of. For the last 2 years it’s worked that way, I recover enough to start little expeditions outside again then bam, relapse. Aldi’s 7 minutes stroll away. I got there with no problem (did struggle a bit on the way back, but not badly), I wasn’t holding mum’s arm. In the store I had the trolley of course, those are wonderful for supporting you aren’t they! felt so secure, maybe I should steal one and become a bag lady.

Anyway…visiting a physical supermarket again was a BIG learning experience for me (I shop online with Tesco now). Up until that moment I’d fully expected that any time I got to recover enough I’d be able to slowly start getting groceries again myself. Because I’d only been considering the physical side of things. Being there in Aldi gave brain a chance to show me how it dealt with a supermarket environment now, which was to basically go, “nope, too much input, I’m shutting down now!”…So online grocery shopping/home delivery really is a life saver for me, because unless I have a large amount of cognitive improvement, actual food shopping’s a nonstarter.

So tomorrow’s going to be interesting from that aspect too! I’m hoping for some positive impressions at the end of tomorrow. I’ll be going into it feeling positive anyway, that hopefully counts for something!

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Hello

Your experience is similar to my OH who has SP. He does not come shopping anymore but to be honest he does not mind that much. We stopped because really all we ended up doing was going into town, having a coffee (rest), and then coming home again. However we do plan well ahead when we are out and about and I do leave him sitting down while I pay for things etc.

I would suggest that you really need to pace yourself and have plenty of planned stops. A whole day is a bit much as you have not been out for such a long time. I do remember parking my OH on a display in John Lewis while I carried on!

You may need to think about a mobility scooter to keep you out and about. I am always pleased when OH uses his as it is less stress for me wondering if he is going to keel over at any minute. We have a boot scooter that dismantles, but I do find the components rather heavy. Some shopping centres let you hire them by the hour.

Hope you have a good day.

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Hi Bonnie :slight_smile:

Yeah, my mum’s already planning a route, bless her, as I don’t have knowledge of where we’re going. She’s thinking going one place, then have some lunch probably, then go somewhere else, and me always having the opportunity to go and sit in the car if there’s nowhere else convenient for me to park myself. A scooter’s not really an option where I live, I AM going to have to move sooner or later because I’m in a first floor flat with only stairs for access, plus I have an upstairs myself. But there’s nowhere where a scooter could be kept here, you see. So I do need to be living somewhere more accessible before anything with wheels becomes a necessity for me. An upstairs flat with lift access, a nice view, and a balcony is my dream. :smiley:

In part my lack of going out is absolutely me holding myself back because I don’t get any enjoyment from going out now. I’m so aware of how closer to losing my balance I am to all the other pedestrians that I need to avoid, that I find any excuse to stay in, even when I am managing better. I live right in the centre of town you see, my flat overlooks the high street. I’d definitely get myself outside more if I lived on a nice quiet road that I could safely amble slowly up and down without having to navigate around umpteen fast-moving people with shopping bags and pushchairs and so on.

My mum nags me a bit about getting a stick. She’s convinced my reluctance is because I’d be embarrassed to use it. But it’s not, it’s because I drop things without any warning, so a stick seems like a really bad idea to me. Drop that at the wrong moment and I’m pitched straight into the road. I think a crutch might be a better option, but so far I’ve had no luck with my recalcitrant brain letting me look into finding out about getting one.

But as so far I’ve essentially not had any treatment (I’m going to make a different thread about that), who knows how things will go once I am. I don’t want to make any big decisions until I’m on treatment and know what’s going on with that.

Part of me wonders if that’s just me putting things off in another guise. But I want to hope that it’s sensible thinking.

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Get yourself a rollator walking frame something to hold onto and then a seat to sit on when you get tired and cant find a seat , they fold up for storage and not to heavy to carry ,it would be such a shame to stop going out , i always use mine when going out but the time has really come for me to be using a wheelchair but still trying to struggle on .

I hope you have a lovely day out but dont try and do too much and make sure you say when you need a rest.

Take care Katy

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Katy yeah, a frame with a seat does seem like a good option for my situation, doesn’t it. I’m always really concerned by the posture of the people I see using those though. Are they so bent over because they’re mainly little old ladies and they have osteoporosis, or are these frames’ handles not adjustable enough so you can actually stand up straight? Or is it because they’re not heavy enough to be stable if the handles are higher?

Tomorrow, I suspect I’ll not get a chance to over-do things, because both my mum and my sister will be asking me if I’m doing ok, regularly, and I’m not one to do the “yes, I’m fine!” thing, when I’m actually not. So fingers crossed my outing will be got through without any hitches. :smiley:

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you’ll probably be fired up on adrenaline during the shopping day.

however you’ll pay for it the following day so plan a day of rest.

hope you really enjoy the day.

carole x

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Haha, yeah! I’m fully expecting to be both knackered and braindead on Wednesday! Not a problem if I do absolutely nothing though. Also, not much different to most other days!

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Hi I got some elbow crutches from a physio so glad I did I am so much more stable though people still walk into you but they end up whacking themselves on the metal bits hubby says I need to have bull bars fitted.Glad I didn’t try to buy some off the net as I din’t realise they bit from your elbow upwards comes in different lengths and it took a few tries to find ones to fit little old me I did begin to worry she was going to suggest children’s ones.i don’t drop them as much and if I do they don’t drop to the floor.Have a great time shopping and resting the next day

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Thanks Stella!

I really need to find a way to be more pro-active about finding out about things, don’t I? Sadly I’m all too likely to just do nothing, because of the exec. dysfunction. But this is where a “gently nagging” mum comes in! That was what she was told she needed to do by a guy from the MS Society that she spoke to on the phone. ><

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i know what you mean in my case itis a nagging hubby and counsellor who say I have to nag the GP only took about 10 years to get help with walking and referred to a neuro things move slowly here and that includes the GP group who have a wait and see policy

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Wow, I clearly got to see a neuro/diagnosed surprisingly fast then, compared to the problems some people have had D: I saw a GP in early January of 2013 after an intense relapse that hit on Dec 22nd basically forced me to go to the doctor about this. It took about 3 months to actually see a neuro, but he sent me for an MRI and when I saw him again in the August I got a diagnosis.

He did have second thoughts later on that year because I was relapsing more than every 6 months, but after another MRI and an LP he confirmed that it was MS, just highly active, so he got me on Tysabri pretty quick. Shame I turned out to be unresponsive to it! Kind of sad when you almost look forward to going for an infusion, but the other ladies in my infusion group were cool, and I’m sad that I don’t get to see them now.

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Hi Jellysundae

Hope you have a good day with your Mum and sister. As the others have said, make sure you have lots of rest breaks (coffee, chocolate etc etc). I’ve found that a stick helps no end when I’m out and about (both re balance and fatigue) - I have one with a wrist strap so if I ''drop" it, it ends up dangling from my wrist rather than falling to the floor… don’t know if that would work for you, but just thought I’d mention it.

Take care, enjoy, and rest, rest, rest for as long as you need after your day out.

Hazel

x

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Hi Hazel :smiley:

I have thought about the ones with a wrist strap, yep. I’m not sure they’d make any helpful difference though. I’ve got no problem with picking things up if I drop them, you see, it’s the act of dropping a stick at the wrong moment causing me to fall which I’m worried about, that moment when your weight is on the stick as you’re taking a step.

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Eee innit rediculous! at one time we would dash out of the house, without a thought or backward glance, incase wed left something vital to our new` life?

I always plan well in advance, even down to what I`ll wear and get it out of the wardrobe and accessories laid out ready too.

So, you`ll be out now, on your expedition, eh?

I am wondering how it is going or if you`re back home lying down.

So how was it? Better, worse or about just how you expected?

Did you think about maybe having a wheelchair in the boot of the car, for the time when you felt sapped of energy?

If the trip went better than you thought and you actually coped quite well, considering, then I am sooo happy for you.

If it beggared you and wish you hadn`t gone, well instead of abandoning any future ideas of trips out and becoming even more housebound, with cabin fever, think about renting a shopmobility walking aid…in whatever form it takes.

Pease dont give up on trips…there IS another way…honeslty, I found it!

luv Pollxx

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Thanks Poll :smiley:

I’m back now, got in about 20 minutes ago and made a beeline for the kettle! It went ok, but boy am I tired now! lol. In the end there wasn’t any prolonged amount of walking about, so it worked out nicely. Mooched around Dunhelm first, I did nab a shopping trolley there as those give such good stability, I did park myself on a chair for a while, but that was really more so I could just sit and stare into space for a bit because I could feel brain overload threatening, so I needed some time without being able to see a tonne of stuff. Then back in the car to go to Oldrids to get some lunch and then look around there, then back in the car to go to DFS, so plenty of rests. There was only one point where I was starting to struggle mildly, but we were just about to go back to the car anyway.

The escalator at Oldrids made me a little nervous. Stepping onto those is always a bit unnerving anyway, I think. This is the first time that I’ve used one since becoming less capable on my feet, I really wanted to be able to hold onto something to steady myself while I was stood on one foot as I stepped onto it, but of course the handrail moves too doesn’t it, doh! I managed it fine, but I think I’d rather take the stairs instead now, while I still have the option to do that. (there was a lift, but I hate lifts!)

A folding wheelchair’s potentially good option down the line, I think. I can’t drive myself, got to go out today because my sister’s staying with mum over the bank holiday. But if the opportunity comes up to get a folding chair for a bargain price, I can def see that that would be a good thing to tuck away in a cupboard somewhere.

I plan in advance in that way too! I had my clothes out ready last night, then changed my mind several times, then went back to my initial choice in the morning! I really struggle with those kind of decisions now, well, I suppose I struggle with any kind of decision. My mum’s learning to deal with this, my nan/her mum has Alzheimer’s and it’s exactly the same for her, so mum’s learning to also not give me too many options because I’m not going to be able to make a choice.

But today has given me a chance to find out my current capabilities, so I’m really glad I went. Now I know that I should be able to do things like go to the sorting office (which I do need to do) without being afraid that I’ll get the furthest distance away and need to sit on the curb, like a waif, until I’m able to get home again, and as I’ll be started a new treatment soon, maybe this time I’ll see some further improvement instead of another relapse in a few months.

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HI Jellysundae - so glad it went well today. Yes, of course you’re tired … make sure you have a good rest tomorrow. And you can plan for next time with the hindsight of how things went today. I understand what you mean about weight on the stick at the ‘wrong’ time - but there are other options which you’re thinking through, which is great. Know what you mean about escalators - I’ve always felt nervous about stepping on them - especially when coming down and there is a big empty gap before there’s a person! I kind of stand there with my foot hovering over the step and it feels like ages before I’m ‘brave enough’ to actually get on the thing. Worse now, of course! I will go in the lift, so long as I’m not on my own.

Well I’ve had a busy day, so off for a rest now and a cuddle with the cat!

Hazel

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Hi Jellysundae glad your trip went well I am back from my foray into the outside myself planned with military presicion by hubby with lists to remember everything and a list to remember the list I managed to get what I needed.Well this will be the last post I do on this computer just had notification the new one is arriving a day early that is a nice change,i hope the new one lasts as well as this old one it is 15 years old a a little tired.Enjoy your rest and the secret of success is planning.

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Well there you go! You did better than imagined, albeit with several opportunities to sit and rest.

Glad to hear you are open to the idea of getting a folding wheelie…just in case…you can get them on line for around £100 or less.

Good girl!

luv Pollx

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Thanks ladies :smiley:

It was another shopping mental ability learning experience, too, which is good. I bought a new duvet which I regret now, not because I don’t need one, because I do, but because I paid £16.99 for it. Now that’s a perfectly reasonably price for a Fogarty quilt, but I could have got one from Boyes, here in town, for half that. But I didn’t make that realisation until this morning, nearly 24 hours later…where as pre-MS that would have been a pretty much immediate thought.

I honestly didn’t make the connection of it being a brand name until this morning, either. So I absolutely need to learn to not buy something that isn’t a pre-planned and well researched purchase, I think. I also need to train my mum about this, because she’s more likely to encourage me to buy something that she sees I’m interested in, without taking into consideration MS-induced decision issues, and whether I actually need it, or whether it might be cheaper elsewhere. Being only on ESA (still on assessment rate over a year later…) I can’t afford to be spending more than necessary on anything at all.