Sorry, folks, I’ve been trying to be strong but today I ended up in tears and I don’t reallly know why.
Stupid I know but I tried to manage without my stick as I only wanted to pop to one shop and it was about 60m away. I forgot about getting back to the car again and of course the town is heaving with tourists as it’s a beautiful day. Why, oh why, do they always seem stop dead right in front of me? It’s hard enough to get my legs going but it’s damned near impossible to do an emergency stop! It’s now my hip that feels dodgy, it doesn’t feel as if it is very strong at all and feels like it’s going to let me down at any time.
I ended up walking with a very pronounced limp and honestly felt that it was really visible. That’s the first time that I have felt that it was really obvious and yet still the tourists walk straight at me swinging cricket bats etc (and that’s the adults!).
I felt really vulnerable and shaky by the time I made it back to the car and just as I had thought I was making progress and didn’t want to get too reliant on the stick. I read somewhere the other day that you should manage with the least aids possible and I have got it into my head that some of my walking problems are because I have picked up bad habits by relying on the stick. I wish the physio appointment would hurry up.
Now I just feel stupid and miserable :'(. I really must stop being so impatient. I don’t even know why I am so upset. I thought I had come to terms with using the stick as it helps and I always knew that it was still there for bad days so that I can still get out and about when I need to so why the hell did I get so upset about realising that I cannot manage without it?
So sorry you are having a bad day. I had one yesterday and it’s horrible to get so upset over things. I think when things like that happen it brings home the reality of living with ms… I must admit I don’t use my stick very much. I can still walk a reasonable distance without it but would probably feel a lot more comfortable if i did use it, as I limp round. I know it helps but I resist using it. Daft really when it helps but I do understand you trying to be independent without it. My hubby is always telling me off for leaving it behind. He says he would happily carry it in a rucksack till I needed it, bless him. Hope your day improves soon : )
Hi Tracey, firstly sorry that you are having a bad day. Being out in crowds can make me feel vulnerable too, especially when I am in pain or wobbly and that feeling is bound to make you upset. I can relate to your feeling about use it or lose it and not being too reliable on aids - I felt like that for a very long time and now I realise that I was struggling when I really shouldn’t have because … well a whole lot of things really - pride, denial, worry that I would become reliant on aids and get weaker etc whatever it was! I did spend a lot of time out on a stick or wobbling and worried I would be knocked over. However, I say that to illustrate that we all have reasons (often more than one at once) why we play the game where we think we are not disabled because we don’t look it to others, it’s a pleasant fantasy I indulge in myself and frankly I’m sure keeps me from weeping every hour on the hour. So it is not at all surprising you are weepy now - you have been out and about limping and looking disabled and vulnerable so it’s come flooding over you. You’re also probably worried it’s the start of another relapse if you are RR. All your emotions are understandable. Be gentle on yourself and remember, this is just a bad day and I’m sure tomorrow will be better. ps Far from becoming weaker, I’ve become fitter and physically stronger since being in a wheelchair and play in a wheelchair basketball team now so don’t worry about the slippery slope to disability - it’s not necessarily the case! Take care and hope you feel better soon xxx (((((((hug))))))))
Hello Tracey, sorry to hear about your bad day. The first time I used a stick outside I was surprised at how considerate a lot of people were. It’s a bit of an issue whether to use a stick but as someone who’s quite badly affected I’m quite happy to signal my walking difficulties with a stick. As far as tourists are concerned, they need to be informed-usually by making my stick more obvious. Hope you’re feeling better about yourself soon-we all have dark days. Steve.
Would it be too obvious if I cracked them on the ankles with it?
Seriously, I had far more consideration in London than I do in my own small town whether I use the stick or not
I think the tourists are too busy having a good time. I’m so aware of that, having lived with it for so long, that I try my very hardest to be really considerate whenever I visit somewhere else whether it’s for a day or a week.
I’m recovering from a relapse which started in March. I had steroids which freed off the leg which had seized up (the right one) but now the left one is being a nuisance. My GP wanted to give me more steroids but I don’t feel it is a relapse; I just think it is all part of the recovery.
I know that when I had a relapse 4 years ago that affected my legs (which also hit me in the March, I guess that’s a bad month for me) it took most of the summer months to get my walking anywhere like normal again. Even then they were painful and achy for several more months. I was hoping that because this relapse only affected one leg initially I was going to recover quicker.
Anyone know where I can buy some patience? Scrub that, I’ll go and buy some wine and chocolate - that never fails.
I cried buckets before I ordered my first stick. It was a huge emotional hurdle for me and it took lots of support from kindly folks on this very board before I plucked up the courage to use one. Funnily enough, I always used to joke and say that when I was an old woman I was going to have a stick so I could trip up badly behaved adolescents. I didn’t plan on having one before I was old. Maybe that was my comeuppance for having nasty thoughts?!
I think you are being a touch hard on yourself and a little more perspective is required. The logic of not using your stick for fear of developing bad habits is sound enough, but better to pick and choose your moments first. Crowds and a hot day do not make a great combination for us, so best put it down to experience and move on.
I wish your physio appointment would hurry up too.
I do that too lol. I’ve been using it since March and it sometimes still gets a bit tangled up with my legs!! Oh dear indeed. I fear I may have a lot to discuss with the physio …
Hello Tracey racey.We all do too much at the first opportunity and I for one am beginning to realise this…12 years later.For what it’s worth I think you’ve built a barrier against using the stick as you or maybe the back of your brain regards it as giving in.It is actually the complete opposite as it demonstrates the flexibility to cope when things aren’t working as you want.
I reckon the tourists threw you a bit,you couldn’t stay within your ‘Stick Comfort Zone’ and you’ve felt confused, ***sed off and for no reason started blaming yourself.Whatever you read was written by somebody who hasn’t had to go through what you have and might be an ‘expert’ but not a ‘user’. If I hadn’t spent £thousands on mobility gear,from sticks(I made them though) to the powerchair I’m totally dependent on, I’d have sat in front of the telly 6-7 years ago and…
Should you have other dodgy stick outings it may be time to get all flexible again.Your Fizzio will have views,it’s paid to,but if you’ve got a few quid spare a good Mobility shop will offer ideas.Yes, their aim is to make money,but they see all kinds of folk using mobility aids and their reputation depends on good advice. Struggling isn’t good for any of us but if you’re worried about not using your legs enough the Fizzio will gladly provide you with exercises
If you look closely this isn’t a postcard but a Chocolate +Wine voucher.My problem used to be getting to the third bottle.I never saw much of the Choc-Choc.
Oh dearie me Tracy, I hope we weren’t one of them many tourists seems as we’ve been in the Norfolk area, although I would have been the one probably looking and thinking she walks like me, I wonder? we had a lovely time in Norfolk and I didn’t use my stick although a few times I did think I would have been better with it but like someone else commented before it takes a lot of pride to use it. I hope your feeling better now hun, not like you to be down from what I know of you on here. Hope you’ve had some chocolate and wine as that was an excellent suggestion in my eyes. I also feel vulnerable in crowds and my walking isn’t massively affected but I do know that if someone accidentally walked into me I may be on the floor. Anyway keep that chin up and don’t feel bad about being upset. I think m.s gives us an automatic right to that xxxxxxxx
Hi Tracey! sorry to hear you are having a bad day. It was my turn yesterday and you were so supportive that i wanted to return the favour. I hope you are ok now? I dont have walking problems but have balance issues and found the neuro-physio really helpful. I hope you hear about an appointment soon. Chin up my love and wine and choccies do seem to make things better. ((hugs)) Teresa.x
Wb - Thank you. I’m feeling better today. I shan’t be trying to manage without my stick in busy places again for a while. I think I will wait and see what the physio says first,
Lisa - I’m glad you had a good holiday and I’m sure you’re not an inconsiderate tourist. I’m sure, like me, because you have to concentrate so hard on walking, you are more aware of others around you and give them more consideration, not less. I think you had the best week weather-wise that we’ve had so far all season.
Teresa - thank you. It really is a roller-coaster isn’t it? One day I’m up and dishing out advice and the next I’m a mess and seeking it back lol. I’m feeling better about things today and I have learnt the hard way to make sure I have my stick with me at all times
In the meantime I will keep doing a few exercises myself until I see the physio …
If you do ever find that Patience shop. please will you put an order for me, to have 50 gallons delivered to my home every month. Do you think that will be enough? Ask `em to old some in reserve for me, just incase I need extra!
Eeee, if it were only that simple, eh?
A magic shop, where we can buy whatever we need…as long as it`s not too expensive!
Using your stick is a must. Yes, I know its no twhat we hoped for, but if something helps keep us safe, then im all for it.
I never imagined my life would go the way it has. You should see my house…looks like a nursing home…I used to really hate all this stuff, but now I know I really need it all…without it i`d be in a right old mess!
You keep safe and use whatever helps you do so, yeh?
You’re beginning to sound a bit like my mum - except she was way more stubborn than me. She would give out the advice but not take it
I feel bad for moaning about having to use a stick when you, and so many others, are so far down the road of having to use so many aids. I should be grateful, indeed I AM grateful, that I have so much use of my legs - it’s just that little things like yesterday’s incident can still throw me sometimes because I keep thinking this is a temporary situation and I should be getting better by now.
I think that may be part of the problem. In my head, I still don’t think of myself as disabled and the stick doesn’t fit in with that! I’m going to have to admit that it’s a reality and that it is there for whenever I need it - now and in the future. I’ve had enough bad days in the past 4 years where it would have been a help, despite me saying I have been remarkably well and despite the fact that there have been days when I could have walked for miles. There have also been days where I’ve had to stay in because my legs were too painful.
It only takes a couple of good days here and there for me to convince myself that I’m fine again and back to my old self and then the MS gives me a large reality check. I was recovering nicely with my right leg and then the left one thought it would get in on the act!
Now if I ever find that magic shop my list is:-
Patience - by the barrel for you and all MSers out there
Humour - for those days when mine deserts me
Energy - need that by the barrel too for all of us. Need to sprinkle it on instead of talc after a shower.
Understanding - need this to spread in large doses wherever we go (oh, and perhaps send a barrel to the government and ATOS?)
Of course, if the magic shop really existed they could probably sell a cure but it would be way out of our price range
Scrub that, I’ll go and buy some wine and chocolate - that never fails.