Hi, this is my first time on this forum. I was diagnosed 15 years ago but this past month my walking has become quite bad. I feel very low and am crying often. I think it is a combination of my ms symptoms and menopause (I’m 47). I’m still finding it really hard coming to terms with the fact I’ve got this and that it’s taking my walking ability away and independence. My husband does all the cooking and helps me around the house when he isn’t at work (if I need it). Is there anyone else struggling with this or so it just me?
Hi Stones,
Sorry to hear about your diagnosis.
MS is always challenging but we must carry on, you’re not alone and we all try and support one another.
I presume you’ve talked to your MS nurse or neurologist and are on muscle relaxants, if not give them a call.
I struggle walking and cherish every step. I work out the best most efficient way of using my steps every day.
Get my shopping delivered from as little at £1.
Use a shopmobility scooter.
Sit on a high stool to cook, iron etc.
Shop online.
Meet friends for coffee in places near car parking etc.etc.
We all have to work out the best way of dealing with our very strange and challenging symptoms.
Keep strong.
Jen x
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Hi Stones
It’s a terrible thing, coming to terms with the loss of independence. It happened to me at just a little younger than you, so I understand what it feels like.
Live had MS since I was 30 and am now 49. My walking deteriorated gradually over a few years and I started being unable to do things for myself. But then I had a real humdinger of a relapse 4 years when my legs refused to move. Everything below the waist just stopped and I had to go to hospital where I was hoisted all the time. Then into a rehab unit where I gradually regained a little bit of function over a couple of months.
So now I can walk a few metres with the aid of FES and a walker a few times a day.
Without my lovely husband I would be utterly lost. There is so much I need help with today. And luckily he took early retirement 3 years ago. So he’s with me most of time time.
I feel at times still completely bereft of my independence and (particularly) the ability to walk freely, but ultimately, so lucky to have my absolute other half. I hope you are as fortunate as me with your husband.
Sue
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Hi Sue,
Thank you for your reply. I don’t mean to sound nasty but its nice to hear I’m not the only one going through this.
My walking has deteriorated gradually over the years too but this past month has been bad. I walk around the house on crutches but as my husband works all day I dwell I things, which isn’t good.
My lovely husband as I said does all the cooking and cleaning I couldn’t go through this without him so I wish I could accept my abilitys have changed, it would make my life and his life more bare able. It sounds like we’ve got lovely husbands. Mine puts up with so much and I’m so greatful.
Thank you again for you reply.
Julie
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Hi Jen,
Thank you for your reply.
I’m not on muscle relaxers, bit worried they will take my walking ability away completely.
I do get my shopping delivered and my husband or son puts it away for me, I have a perching stool I use to prepare things on good days and make myself a cuppa during the day.
I’m too self conscious to use a mobility scooter (silly I know) I really need to get over it and accept that I’ve changed.
I can’t get out of the house without help I would love to go out for a coffee but I’m ashamed of having this, how do I get past feeling like this?
I try to stay positive but when my walking is bad I start thing the worst.
Julie x
Julie, I think you have yourself pinpointed a couple of things that are making life even tougher than it needs to be - you say so yourself, and the fact that you have identified the problem is a good and necessary start.
How to make further progress? Well, I don’t know what might work for you, but what worked for me when I got mentally stuck was counselling. If you are groaning inwardly, I don’t blame you - so would I have done a few years earlier. But counselling truly gave me a fresh perspective on old problems and helped me to think my way around and through some of the self-constructed barriers that were impeding my life all by themselves.
I started with my GP and went to the lady who is attached to (but not part of) the GP surgery. Your GP might have someone similar. It’s worth asking, I think. In any case, you want someone who is BACP-qualified - that’s a guarantee of a formal and recognised counselling qualification.
Good luck.
Alison
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Hi Julie
Yes this MS is such a challenge and forever changing!
I read your post and thought that’s like me - as my walking has become really rubbish over the last 6 months, along with fatigue and concentration problems. I’ve finally had to give up work and I feel lost so much independence
I am currently managing to get out in my car to the local shop where I can park outside. I am also meeting friends for a coffee but like Goldrat says it has to have a car park near the door.
I’ve been surprised at how good my friends have been with me as I’ve been so fed up about things but I find although it’s so difficult to drag myself out it really perks me up!
Do speak to your MS Nurse as she may be able to arrange for you to have some physio which might help with the walking.
But like you say we must stay positive!!
Sue xx
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Julie,
Just a couple of comments, although it is much easier said than done, you should never feel ashamed by having MS and how it changes us. We should only feel ashamed of stuff when there is a choice involved. In a bid to not be a hypocrite I will say that there are some things - situations that I still avoid. Once you have been OUT for a coffee once or twice you will know which new strategies are required to make it as easy as possible and you will also start to become less self conscious.
My mobility scooter gave me a new sense of freedom, no longer housebound which goes a long way to getting past any embarrassment. As a boy of a certain age I no longer care too much what other people might or might not be thinking.
I too use the perching stool to help prep dinner, because my amazing wife is out all day I have plenty of time to do all those “10 minute” jobs. It might not be a massive contribution but it makes me feel less than useless.
Your husband sounds like a good’n but how would you be if the boot was on the other foot? … thought so
Good Luck
Mick
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Julie, there are some good points in this thread and most of them are made by you, it seems to me.
That is such an important point that you’ve put your finger on: the need for reciprocal effort. So good for everyone’s morale. The person having to pick up a lot of extra work will always appreciate it when the other one is also thinking about how to help and (this is the hard bit) using those thoughts to engage the wheels of action. This applies with bells on when the effort involves the sort of emotionally painful adjustments that you have referred to - fresh thinking on mobility aids, for instance, and a fresh look at how you see yourself in the world as a person with MS. It is no coincidence that these are also the things most likely to contribute to your own peace of mind and quality of life.
You know all this: you’ve said it all yourself. Spring is a good time for a good old sort out of attitudes and manners of thinking. Sometimes ingrained attitudes and habits of mind can be like that grimy and disreputable but oh-so-comfy old pair of slippers. You know you should throw them in the bin where the belong without hesitation, but in fact it takes real effort. Afterwards, of course, you cannot imagine why you clung on to them for so long.
Good luck with the mental Spring cleaning.
Alison
Hi Julie, youve got some really encouraging replies, so Id like to add my two pennarth, even though I may be repeating what others have said.
I began with serious mobility problems aged 45 and I am 63 now.
It floored me…literally! I`d always been very active, independent and quite bolshy when necessary.
Now I find that bolshiness had stood me in good stead. My nickname is Boudica, as you can see.
My electric wheelchair is my chariot and I drive it with determination!
After just 2 years of problems, I was needing a wheelchair part time. I had previously used a stick, then a walker, then a scooter.
Had I not used these aids, I wouldve been stuck either at home or in bed...and my world wouldve been much smaller and yes, boring!
Please think about getting some wheels. If you are reluctant to go out alone, is there anyone who would go with you?
I have 3 carers who I pay with Direct Payments, as I dont ike to go out alone…however bolshy I am…I like company!!!
luv Pollyxxx
Hello Stones
Welcome to the club of which no one really wants to be a member! I can feel your pain… but suffice it to say that we’re all in the same boat, and you’re not the only one! My other half has been dead good, but I appreciate he gets fed up with it from time to time… haven’t any good advice, I’m afraid, but just to say “Best of Luck!” and feel free to come on here and whine a bit…
Fracastorius (Jane)