Morning everyone, I think I am having another bad day! I was dx late Sep with rrms this year and then a week later following some very stressful family troubles which are still continuing I suffered a major relapse not being able to drive or walk it gradually got worse over the first 4-6 wks until I wasn’t able to walk or drive! I was given some oral steroids and waited to see results but they never came, after 7 wks my nurse suggested I go into hospital for some iv steroids, that was 2 wks ago now. On a positive note I am now walking around the house without my stick and I can walk for a few steps outside without it too even though I look very robotic! I have tried getting into the car to see if I can feel the clutch pedal again which is still not great and I definitely still can’t drive! I have been signed off work for the past 8 wks now and I just want to get back in the car be able to drive my daughter to pre school (rather than relying on others to do it for me) and get myself to work and do my job! Sorry to be a bore, I think I have just had enough now from being mobile and independent to now not being! Is this it, will I be like this for ever or will I recover more!! I know there are people must worse off than me, guess I’m just struggling to get my head round all this!! Thank you for reading Liana
hi liana
my life has changed dramatically in the past 6 months. i am a single mum of 4 (3 still live with me) i cant drive,havent worked for 5 years or so, cant write,cook or knit etc etc BUT i didnt want to go down the ‘ms has made me give up blah blah’ but i chose to look at things differently such as use public transport,encourage kids to cook (which they enjoy),i talk instead of write (albeit with foreign sounding accent due to recent relapse!)
what i am trying to say is-the body may be struggling but u can keep the mind strong. i cry with frustration not because i am upset. i laugh even more than before because the past 6 months have helped me realise whats important and what isnt. as humans we love to beat ourselves me-guilt mainly. dont bother-that just gives us more problems!
find YOUR way-thats the right way. enjoy the rest of ur day
ellie x
I am sorry that you are having such a rotten time. In my limited personal experience, IV steroids sometimes work quickly but it sometimes takes much longer for the body to repair itself and restore function as much as it is going to. When things are bad, it is sometimes hard to really believe that things can get better, but they can and they do. I find it very difficult now to imagine what it was like to be me when things were at their worst. When they were at their worst, it was equally hard to imagine improvement! I hope that the improvements that you are now seeing keep on steadily going in the right direction.
Alison
x
I went from being a care home manager to being at home 24/7.
I had to give up driving after 27 yrs and never went out unless hubby took me.
Not a good place to be…so I empathise with you.
Today the weather forecast is not good for later, so on with my coat and I walked unaided and alone to the chemist to pick up 2mnths of all my meds (that is some weight) and the to the supermarket to get bread.
When it seems that it will never end, keep strong and you will find that light at the end of the tunnel.
Take care
Pip
Same as me, i so want to go back to work. Its so frustrating not earning. Things can improve, their is no time on how long it can take tho. Just keep as well as you can. I cope with being ignorant towards what could happen in the future. Never know might win the lotto!! But have a great christmas im sure the doctor will order it!
To pick up on just one of your points - if you are having difficulties with your legs feeling car pedals, there is always the option of Hand Controls.
It is amazing what other gadgets (for want of a better word) are out there - although it is sometimes hard to find the link to what you need. A physio or Adult Care referral is always a good starting point.
Thank you to everyone for replying, I guess I have got to give it more time and keep thinking and looking at the positives - which I usually do, I think the waiting game is just grating on me now! But thank you all again, and I hope you all have a lovely Christmas xx
And I hope you do too. I have had spells of not being able to drive on account of MS attacks, and it sucks. As others have said, there will be options open to you if your legs still aren’t co-operating properly, but with a bit of luck you will not need to think in those terms, and your system will just steadily keep plodding through its recovery programmes, and you’ll be behind the wheel of your own car soon. Good luck with it all.
A
x
Hi Liana,
As you are recently diagnosed has anyone discussed DLA with you or motability? If not you should start the process off so that you can get help. Also ask your OT to organise a driving asessment for you using hand controls as that way you can get back to driving. Also contact occupational health at work (if you have one) if not discussed things with Human Resources at work and contact Access to Work to make sure you are assessed for reasonable adjustments. Access to Work will pay for travel costs (Taxi) until you can get things organised, if you continue to have mobility issues they can also help with an electric wheelchair.
Get help to fill out your DLA forms from your OT or from DIAL or CAB The Disability Benefits Helpline
Telephone number is: 08457 123 456
I hope this helps and that your symptoms start to deminish soon.
PM me if you yhink I might be of further help - you can ask me anything and if I can help I will and if not I’ll try to find the answers for you.
BW, Mary
Hi Liana,
As you are recently diagnosed has anyone discussed DLA with you or motability? If not you should start the process off so that you can get help. Also ask your OT to organise a driving asessment for you using hand controls as that way you can get back to driving. Also contact occupational health at work (if you have one) if not discussed things with Human Resources at work and contact Access to Work to make sure you are assessed for reasonable adjustments. Access to Work will pay for travel costs (Taxi) until you can get things organised, if you continue to have mobility issues they can also help with an electric wheelchair.
Get help to fill out your DLA forms from your OT or from DIAL or CAB The Disability Benefits Helpline
Telephone number is: 08457 123 456
I hope this helps and that your symptoms start to deminish soon.
PM me if you yhink I might be of further help - you can ask me anything and if I can help I will and if not I’ll try to find the answers for you.
BW, Mary
Hi Liana
First, the chances are that you will recover some of the function that you have lost.#
Second, have you thought about an automatic car?
I was lucky (to some extent) in that I switched to cars with auto gearboxes a while before the onset of MS. Partly this was because I drove auto boxes when in the US (2-3 time a year), and partly because my left leg did not like heavy clutch work when in traffic. When the MS struck and I lost almost all the left leg function, there was no problem. In fact, apart from traffic, with an auto box and cruise control, you can drive almost anywhere - you just need your right foot to get up to 30, and to brake.
Geoff