I am really struggling to cope. I was then diagnosed with RRMS in March… It has had an enormous impact on my life and I’ve had to stop everything I was doing. Every time I try to re-structure the plan with the intention of returning to uni etc, my health deteriorates again. The neurologist seems to think my MS is quite aggressive and I am awaiting an MRI and blood tests before they decide upon potential disease modifying medication. I saw an MS nurse last week for the first time and she is going to refer me to physio etc but it will take time.
I have very ‘drunken legs’ and have 6th Nerve Palsy and Optic Neuritis which means I am having to wear an eye patch. I posted a while back about mobility and I did invest in a walking stick. However I found it never provided enough stability, so I used two…but found the same thing. My legs feel so weak, I feel like I might pass out at times, and they go in all sorts of directions. I tried to use crutches but because of fatigue and the stress of venturing outwards it just becomes a nightmare.
Being in my 20s I never thought I’d consider a wheelchair but lately I have because I need to be able to get out and about for the sake of my mental health. I feel housebound and trapped, living alone too. Someone managed to lend me a wheelchair and in some ways it is brilliant because I am sitting down, not feeling like my legs are going to lead me astray or collapse. However I am struggling enormously with being able to push myself on uneven, inclined or cobble pavements. I don’t plan on using the wheelchair all the time, but I thought it may just be a good way to help me get out without being so fatigued or unsteady when I seem to be going through a rough patch again. I do need to figure out how to get used to it though.
Does anyone have any tips for using a wheelchair? Or alternatively any thoughts about whether it’s okay to use one? Are there specific types of wheelchairs which make rough terrain easier? The wheelchair I have seems quite old and feels quite rickety!! It seems to take me to the left and so I am constantly re-adjusting my path. I wonder if there would be a different model which would make being out and about less difficult.
Thanks for reading all of this and for any replies,
First of all, I wanted to send you lots of sympathy and support. I also wanted to say that there are good drugs that may change what is happening to you - I hope your neuro suggests Tysabri, which can have hugely beneficial effects, especially if you start taking it in the early stages of your disease.
As far as getting out and about is concerned, I use a manual wheelchair some of the time. However, like you, I find it hard it hard to push myself on any but the most flat surface so I generally only use it if I have someone else to push. Have you thought about getting a mobility scooter? Think about it - you might find it’s what you need to give you freedom.
As far as when it’s OK to use any mobility aid - for me, the answer is when you need it. I started using a fold-up stick intermittently more than five years ago, moved on to two sticks a year and a half ago and now use a mobility scooter or a wheelchair. I have always fought against moving to the next aid but I care more about being able to leave the house and do the things I want to do than having to use some kind of aid.
On an optimistic note, you may find that you need lots of help to be mobile for a while, but if you get on the right medication, you’ll stop needing it again. I have always cycled (on a bicycle with a motor I can switch on and off, for the last few years). I was finding this very hard in March and April but recently it has got easier again.
sounds to me like you dont really have the body strength needed to self propel a manual w/c.
upper body strength is needed to do this,i have never been able to,the best solution would be a mobility scooter,but being only young i imagine you wouldnt want to,
im in my 50s and have a scooter ,but at my age it isnt as bad,but i still feel conscious when i use mine,but i keep telling myself its only a tool to help me get out a bit more,i was reading that a lot of students are starting to use them as a cheap form of transport,saving money on buses and taxis,
good idea,they may become on trend soon for the younger age group,
i do prefer a scooter though, i hated being pushed in my w/c and refused to use it after a while.
lets hope you get some help soon , like tysabri if your ms is aggressive.
Thanks very much for both of your replies.
My upepr body strength isn’t amazing, my legs used to be the strongest part due to lots of cycling and gym work but not at the moment! I would love to get back to my bike one day.
I would be reluctant to use a mobility scooter just becase of my age but I do agree that perhaps seeing it as an aid and something that would help me not be so limited is a good way of thinking about it. I could be part of the new trend
I am quite stubborn and I do want to be able push myself as I also want to keep my fitness up. I did see a wheelchair just recently that is manual but has a switch which then motors it to help when arm ache kicks in or for steep bits. It would be ideal and a half-way between fully manual and a mobility scooter…but it is in the £1,000s!!
You both mentioned Tysabri and I am currently waiting for the JC virus test and the MRI to be booked before the neurology team decide. However I am very nervous about this medication - I guess this is another post I could make when I find out if I’m eligble. I wonder if either of you had been on it? Apoligise if this is a noisy question from me!
Many thanks for both your support and kindness,
I think a power chair would make all the difference. I would be rubbish with a self propel chair but I get out and about in my powerchair.
The first step would be to ask your GP or MS nurse to refer you to wheelchair services. The prescribing criteria for an indoor/outdoor chair is that you need it 24/7. They don’t prescribe outdoor electric chairs for intermittent use. (It is one of my hobby horses because I think access to an electric chair would make all the difference to so many people’s lives)
Once you have been assessed if they turn you down for a chair (or if the waiting list is interminable) you will need to seek alternative funding. You can get a chair through the motability scheme if you get the enhanced mobility portion of PIP or you could apply to the MS Society or the Student Union for a grant.
Speaking of PIP. Have you applied? It is not means tested nor reliant on NI contributions so your status as a student will not be a problem.
I’m on Tysabri - I think it is a very effective drug but I was in quite a bad state when I started it. I have continued to deteriorate since starting Tysabri, but not as fast. I think the drug work best if you start it reasonably soon after diagnosis. I am JC virus negative at present but that could change at any time. I would carry on with the drug if I did test positive - because I have seen the terrible things that MS has done to my body and how Tysabri reduces this. I am prepared to take the (smallish) chance that the JC virus might do something worse.