Yesterday i took myself off to meet my two sisters and i realised very quickly that i had pushed myself too far. Even though we took things slowly the walking was too much for me. Its not that i cant walk because i can, its the tightness and pain in my muscles that cause me problems also upper body muscles due to being upright. When i got home i felt i had run a marathon and was so exhausted i was unable to have a meal and just wanted to be left alone. Today im still feeling the after affects of yesterday which has brought with it the realisation that things are changing for me and i need to look at ways to adapt to these changes.
Yes, Christine. The word adapt is key. I used to think I could manage a certain amount of physical activity but had to change my perspectives. About twenty years ago, I thought I could drive from Liverpool to London, park by QPR’s ground, walk to the tube to meet my brother in the west end and return to watch a game of football. I froze on the stairs. When it hits it hits.
Its hard to admit especially to others that you cant do certain things. But i know for sure after yesterday i at least have to admit it to myself. Yor right when it hits it hits and you feel like you will never recover.
Oh the times i used to push myself and then i would end up in floods of tears,and useless,i wouldnt or couldnt admit i had problems,and even though i have had ms a long long time, i still think i can do more than i can,and still push myself more than i should.Its hard adjusting to the ms,but be kind to yourself,only YOU knows what you are capable of, and please dont feel guilty either,like i still do.You will soon learn your limits though.
It is hard to accept, but planning and making adjustments is the way forward, you will still do things, just differently.
What about using the mobility scheme, assuming they have one where you go, or alternatively what about using a wheelchair when out and about? You may think no thank you, but believe me if isn’t that bad, especially when it means you do not use all your energy walking, instead you can enjoy your day out, after all, it is just a tool to make your life easier.
Just a thought, would baclofen help? Might be worth asking GP or MS nurse.
It takes time Christine to accept , take one day at a time, and when you feel ready, give my suggestions a little thought.
Suddenly looks like rain here, and the forecast for tomorrow doesn’t sound very good either, hey hho.
Im working on the guilt thing its difficult when we miss out on things, so we try to push ourselves a little harder and ignore the warning signs. Hopefully i will get better at pacing and planning.
I think your right if i had not used all my energy on walking i would have enjoyed looking in the charity shops and looking around more than i did.
I have used the mobility scooters in supermarkets and borrowed a wheel chair for long trips. Im still feeling uneasy about accepting that maybe i need this more and more.
i prefer a mobility scooter to a w/c i hated being in the w/c i just could not accept using one at all and felt so awkward when being pushed,as i cant self propel, but when i got my scooter i felt much better about using that,and i find it gives you more independance than a w/c.
The willingness to adapt is a strength, but it can be tough at times.
I find a pair of very lightweight ladies Leki hiking poles really useful - I’ve used those for 5 years now. Recently I’ve acquired a rollator by Topro, a Norwegian company, and I love, love, love it. I can go shopping with it and sit down for a rest whenever necessary. It doesn’t even feel like a disability aid, I feel I walk very naturally with it. I would say, don’t hesitate to try aids. I wish I had got an FES for drop foot years ago, and a rollator ages ago!
This forum is a really helpful place for advice on adapting to things.
After years of MS I still find it extremely difficult not too push myself too hard…I’m suffering today because I tried to plant a small euphorbia on Monday, I was all of five minutes trying to do it!!
Like you I can walk in that my legs work but more than a few steps and I’m exhausted. I use an electric chair when I’m out because we live in the country side with no pavements etc so a scooter needs to go in the car. I did try a collapsible scooter but didn’t feel awfully safe so now use the electric chair, I also tried a manual chair but my upper body is too weak to self propel and I just loathe being pushed…I found so few people are actually good at it and I seemed to spend my whole time apolagising to people for trying to cut them off at the knees!
made the decision to use the w/c when i could no longer walk more than a few yards without feeling so,so exhausted.i struggled on for years pushing myself when going places to shop, i wouldnt accept it at first,but one day i thought to myself i am being silly so orderd a w/c but from the word go i hated it with a passion,i could not accept having to use one at all.When i did force myself to use it i felt so awkward it just wasnt worth going out in it,because i was in such a bad mood. Someone on this site said to me that she found a scooter didnt make her feel as bad,once you got over the feeling like a wall lol.
so i looked online and liked the look of the Luggie and thats whati am still using,i got it with the intentions of being abe to take it on a plane with me,but never did as i became too ill to travel.
i like it because i can just ‘scoot’ off on my own when we are out,much better than waiting to be ‘pushed’ thats what i found so hard.
i am just the same Nina, my partner used to nearly take my arms off,when he pushed me about,it caused more rows,we must have looked so daft,he didnt look where he was going at all,we were once in the airport,he dropped something. so to pick it up he let go of the w/c on a down slope and i ended up hurtling down the slope crashing into a wall,i felt so silly i told him after a few more incidents like that, that i was looking into a scooter lol.I said if i do have to have another w/c it will be an electric one.
Walking poles are good - but then when l became more of a liability with sticks and poles - l got myself a rollator - not the usual type that social services loan out - but a super Topro Olympus - and it has been brilliant. lts worked really hard for nearly 4yrs now. l still use my Tramper for taking the dogs out- but around the house l use the rollator - and out in the garden as it goes over rough grounds and grass well.
To-day, l had to go into B/ham to the Rehab Hospital for a checkup with my FES. The lovely physio showed me how to wear it differently. lt is now just below the knee - no long wires going up to my waist. This works much better - and l am much happier with it. Next time l go - she said she will change the FES to a newer one with ‘blue-tooth’ which means you do not need a cable going from the footswitch. She demonstrated it. So that is something to look forward to. l did say to her that l wish l could afford the WalkAide type that is a cuff going around the knee. So she then explained about this new one. Which is neater and works the same - AND - its on the NHS. She has given me enough spares - replacement cables and footswitches and the sticky pads to last a year.
l felt so confident walking with it - l even called into our local Aldi - and did some shopping. Bought loads of things - and it all went in the carrier and into a large bag balanced on the seat of my trusty rollator. l am chuffed. And l now have a secret hoard of chocolate!!! And nuts.
l told the young physio about the Biotin l take - and how it has given me so much more energy - she was very interested. l took some old copies of Pathways for her as they only have MS Trust mags there. Pathways has much more info actually for us with MS - whereas MS Trust is all about fundraising and running marathons. As if!
Very strange to be driving on dual-carriageways and city traffic at lunch-time. l live in a small village - just little lanes.
lnterestingly, this clinic have been using the FES to help people with constipation. They use it too make the stomach muscles exercise - l was reading a large poster about it. l should think an ordinary ‘tens’ machine would help with this as well - perhaps even get the bladder working better for those with retention. Not for me - l need something to stop me going.