Legs!

Hi all, My leg problems seem to have moved up to another level. I have had a stick for a year or more but when I went shopping to Southampton today I had a total 'mare. I had to sit on every bench I could find and towards the end I was having to nearly drag myself along from fixture to fixture in some shops. I had some very concerned looks and kind people who asked if I needed help. I was really dragging my left leg and my balance was awful. I am waiting for a neurophysio appointment which I hope will help me but it was a really humiliating experience. I felt like everyone was looking at me - which they probably were as I was virtually just dragging myself along. My husband said that next time I go I ought to get a shop mobility scooter but I am not ready for that yet. Anyway feeling pretty low about it, Teresa xx

Hi Teresa,

Having dragged myself from Lancaster RI to the train station today I can totally empathise. Needed to stop every few yards, legs like lead and balance terrible, oh, and dodging the spritely walkers . I started using a stick a couple of months ago to help with balance but it doesn’t help with the lead legs.

So sorry you’re having a low time at the minute.

Thinking of you

Oonagh

xxxxx

Hi Teresa I know how you feel, I used to drag myself around the shops in town but after many embarrassing falls I stopped going to the shops. My husband used to go alone, I did this for 7 years until I was brave enough to be seen out side in a wheelchair or mobility scooter. Getting the scooter was fantastic, I realised that I should have got one sooner but I didn’t want anyone I knew to see me. We probably all feel like that to some degree but really once you get out you realise that most people are too involved in themselves to stare at you. Do yourself a favour and make life easier for yourself.

Lynne xx

Hi Teresa, I just wrote you a really really long post telling you my own experience of losing mobility and then getting a scooter… and it suddenly just disappeared. Gone.

Anyway hon, I do understand what you’re going through. It is a real blow when you start to realise you just can’t walk anymore… not very far anyway. You will get to a point where you will want a scooter and I can promise you hand on heart that it will be the best purchase you ever made!

Sorry you are feeling low hon and sending you HUGE (((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))

It’s so hard having this damned MS. It’s bad enough getting the first symptoms, then the dx… but it doesn’t stop there does it. It still always puts us in a position of having to face yet another change or loss. But Teresa you will wake up tomorrow and get on with it again. That’s what we do. And believe me darling when you do get a scooter you will wonder why you ever worried about it.

Lots of love,

Pat xxx

Some days are just like that, don’t think that the scooter would be for all the time it’s like a w/chair just when required. You sound Teresa as if you’re asking your poor old body to do more that it can! It’s going to get worse with the ‘C’ word approaching, your heart’s saying one thing and your brain/body is saying NO WAY!

Does that sound like I know where you are?Take care, M

Try to chill

Thanks everyone, You all seem to understand where I am coming from which is sad as you have all been there and beyond! But it helps to know that others can empathise. I’ll get my head around the scooter etc eventually. It’s true M, my body cannot do what my heart wants to! Teresa xx

Hi Tree,

Sorry to hear you are struggling.

If you are anything like me then it takes time to adjust to changing circumstances. You have to listen to what your body is telling you but at the same time we feel like it’s giving in and are determined to carry on.

Would it be possible to use a scooter/wheelchair just when you are needing to walk longer distances? and the rest of the time - walk as usual. It would help you get around so much better. It must be so hard to decide when the time is right to start using a scooter. It is not just a physical decision but a mental decision as well. Only you can decide when you are mentally ready to take this next step.

As you know - ive not had this dilema yet but you have been such a lovely friend to me that i am feeling your pain.

lots and lots of hugs coming your way.

Treek.xxx

Thanks so much Tree for your lovely kind words. I probably will do as you suggested but I am not sure if I am there yet. My head certainly isn’t! I haven’t been that bad before - so it may just have been a really bad day. Anyway, I know what is just around the corner but I’m waiting for a neurophysio appointment and hope that may help a bit. I will wait to see what happens next! Hope you’re still improving Tree. Tree xx

Treek! Sorry!

Oh Teresa, Teresa, Teresa!

You have always offered me lots of kind words of support. So now i want you to heed what your body is telling you…please!

The thing that will make life easier and soooo much more enjoyable for you is a thing which comes with 4 wheels.sometimes they have 3 wheels!

This thing is usually available for little or no charge…it is a common sight these days and it will DEFINTIELY enhance your life.

I have been where you are now… I know what it feels like to look forward to an outing, only to have it ruined by fatige and legs that wont obey your brain`s instructions.

You know, if you do hire a scooter (Im not saying you should buy one) from Shopmobility, then your shopping trip will be more fun, last longer and youll go home later than everyone else, `cos they are whacked and you are still raring to go.

I have been known to come home laden with purchases that i could never have made, if it wasnt for my trusty steed!!!

Go on girl! Do it and enjoy yourself soooo much more.

You know it makes sense.

much luv Pollyxx

Hi Teresa

Sorry to hear this, and I remember the feeling of not wanting to use

aids myself, but sometimes it is best to listen to your body, and honestly

once you have used one, you will not believe the difference. You can

enjoy your day out with your family, go into loads more shops than usual,

cos you are reserving your energy, and the best thing…you can buy

more cos you don’t have to carry it!!

My powerchair is one of my best friends, bite the bullet Teresa and give

it a try, you will be really surprised at the difference.

Pam x

Thanks Poll and Pam, I went to the M and S superstore today and after visiting two reps realized I had completely run out of steam. I thought - I’ll never get the boys’ socking presents sorted at this rate. So I ’ phoned my sister and she and I are going next week to M and S again and are going to borrow one of their w/cs. I feel as if I ought to wear a mask, so no one I know will see me! Lol. But there it is. I won’t manage otherwise. I am now worried about my poor sister having to push me everywhere! Anyway, I’ll keep you posted. Teresa xx

depts not reps!

Good on ya Teresa, you go girl x

Pam x

Hi again. Im happy to read that. Once you get used to a manual chair and someone else pushing you, youll be itching to be in control of your own wheels. Hope the trip goes well…only there will be no trip cos youll be safe…but will the other shoppers!

luv Pollx

Well done Teresa!!! You go girl !!!

I hereby present you with a special Golden Girl award…

(Also remember w/c’s are surprisingly easy to push!)

Pat xxx

Thank you darlings! Teresa xx

Have a nice shopping spree!

You won’t need a mask. I bet you turned more heads when you were pulling yourself along those benches the other day. Your sister pushing you in the w/c will be a breeze in comparison.

I’m a bit worried how much you will spend though as you’ll be able to pile up the w/c! lol! Hubby won’t be pleased when he gets the bank statement! ha ha!

I’ve done a lot of mine on the internet but its not the same as going to the shops.

I hope the phisio helps. I went for 6 months at dx for balance and vertigo/dizziness (once a week) and she gave me things to practice at home.

My recovery is slow and steady but i’m going in the right direction. I am covered in a rash now and have been throwing up (too much info - sorry!). I still have the throbbing teeth and gums. I like to be different!

Treek.x

I have done loads on the Internet but need to get things for stockings myself! I am glad that the recovery is still happening. Your virus sounds foul! Sorry that the teeth and gums are still throbbing. Hope you are better soon. Teresa xx

Hi Teresa

Really glad that youre managing to get yourself out and about now.

My husband has had his first consult with his Neurologist and we’re off for his first MRI on Tuesday. The Neuro told him he was 90% sure that he has ppms, quite a shock for us both I can tell you.

My husbands attitude has been that we carry on as normal as best as we can and get on with things…

About a fortnight ago he decided that he would like to go shopping in the town center. We bought him a stick a couple of weeks before hand to help with his balance and give him seomething to lean on. After about 10 minutes he was completely exhausted and he too had one of his legs dragging slightly. I dont think I have ever seen him walking so badly. He absolutely refused to give in and we ended up stopping and starting round the town center which in the end resulted in him being in us both being in tears in a crowded shopping center. I admire his courage in wanting to carry on and in his words ‘wring every last bit of mobility out of his legs before they completely pack up’ but he just keeps trying to push himself and ends up making himself ill. He has been offered the loan of a scooter from a close friend and the use of a wheelchair but he’s not having any of it. It’s taken me months to get him to have a stick. I have tried just about every known tack to try and get him to use one of the scooters round our supermarket but he’s very stubborn and wont hear of it. I think his problem is that he is 43 years old and that at his age he feels like he should be able to manage, he gets very upset when we are out when people start looking at the way that he walks.

I dont know what I can do to convince him that there are easier ways and bugger what anyone thinks of him using a scooter/stick etc… I am hoping that occupational health will be helpful and maybe be able to make him realise that there is no need to put himself through this.

Handbag x